Gastrointestinal Illness Support

[eli1126]

Hi! I decided to start this to get a support group going for those of us that suffer from gastrointestinal illness: IBS, Collitis, Crohn's Disease, and any other kind that I didn't mention!

Stats:
Name: Beth
Diagnosed with Crohn's Disease: Octber 1995..It will be 10 years this October!!
Surgery: April 2001 had 5 1/2 inches of my intestine removed because it had gotten so inflammed that created a blockage. Inflammation grew right back above incision site :mad:
Embarrassing Moments: Having to go to the Ladies Room at crowded events is awful!

The worst part about having Crohn's is the way I am treated when I have flare ups that hinder my daily life! People view me as being lazy or irresponsible that I can't get out of bed or leave my house because I can't get out of the bathroom! The other part that pisses me off is the way everyone becomes an MD when I eat or someone mentions my having Crohn's :rolleyes: They have no idea what it's like, but to hear them pontificate about it you think they've devoted their lives to studying it for heaven's sake! Anyone Else?!

Beth

[UTChick]

Oh boy, is this the place for me.

Name: Kathy
Diagnosis: Still working on it, but Dr. is pretty sure it is IBS with constipation.

I have been dealing with this my entire life. My problem is that I will go days, sometimes even up to 2 weeks without a BM and I deal with constant and very uncomfortable bloating. (I am assuming that since this is a thread devoted to GI issues, there is no such thing as TMI, right?)

I have tried altering my diet, exercise, fiber supplements, and Zelnorm-- all with no success. I have just started Miralax, so we will see how that goes. I have an appointment next month to discuss this latest treatment and if things still aren't better I will have to have another scope done to try to figure out what is wrong with me.

Beth, I am glad you started this. It isn't a topic I like to discuss with people IRL, for obvious reasons. My dad (he's a physician) and DH get an earful, so maybe I can vent here some to give them a break!

[HSSweethearts]

Thought I would join in, I suffer from Barrett's Esophagus and severe Reflux... does this count?

Name: Liza
Diagnosed with Barrett's Esophagus and Severe Acid Reflux
I have to have yearly endoscopies to monitor the progression.
Embarrassing Moments: I sometimes have difficulty swallowing for hours, and I end up choking and gagging during the most inopportune times due to food being stuck in my esophagus. :(

Beth - I have a friend who suffers from Crohn's and another from Collitis. It's amazing how it can impact so many areas of your life.

[tippy]

I'll join too!

Name: Tiffany
Diagnosis: well I haven't formally been diagnosed but both the doc and I are pretty sure that it is IBS.
Embarrassing Moment: Having to run to the bathroom in the park while I was in NC visiting my best friend that I hadn't seen in yrs. She and I were having a heart to heart, and all of a sudden I was getting horrible cramps, and I had to make a mad dash to the potty :(

I really had no idea what I had until I search the internet Oct of last yr. I was having horrible stomach aches at least 1x every 2 weeks or so for a couple of months up until that point, and I just thought it was normal. I finally got fed up with them and checked to see if it wasn't something more serious than just a stomach ache. The cramps get so bad sometimes that I will start crying, and get hold/cold flashes :(. I have changed some aspects of my diet (drinking more water, trying to eat more fiber/greens), and it has helped alot, but every once in a while I will have another episode (like yesterday morning), so I know I haven't totally licked it. My worst fear is that I will have an episode in a place where I won't be able to get to a bathroom.

Thanks for starting this thread :)

[eli1126]

While I'm not glad that there are other IBS/Gastrointestinal illness sufferers, it is nice to have a support system :) It is a literal PITA! Keep Em Coming Ladies!

Beth

[paiger]

Name: Paige
Diagnosis: After years of trying to work through my issues, I have been diagnosed w/ IBS w/ Constipation. Like others, I have suffered my entire life until it got so bad after the wedding that I went to see a GI doc. So far, nothing has changed except that I have a name for my issues. I need to go back to the Doc (like over a month ago), but my insurance changed so I've had to wait for all the paperwork to go through.

[camberne]

Name: Alice

Dx: I was diagnosed 4 years ago with Clostridium Difficile, ie C-Diff. My gastroentomologist said that it could be recurrent, and from the looks of things, he wasn't kidding!

My PCP made my life a living hell by refusing to refer me to a gastro for seven months, during which I made the stock of immodium a-d rise significantly. I still never really know if a meal is going to sit well or not. I can eat a very "harmless" meal and barely make it home from a restaurant. Sometimes it's just horrible diarrhea and others its that and vomitting. Living life on the edge. I'm ready to find the road again.

Let me ask you gals this... has anyone looked into gastric bypass after their diagnosis, and if so, how has that impacted your eligibility?

[Katyanne]

This is a wonderful thread!! I'm so sorry to all of you ladies who suffer with gastrointenstinal problems.

Name: Katie
Diagnosis: I've been diagnosed with IBS and they are still trying to figure out another health issue. Sometimes I get these searing lower abdominal pains that leave me in a fetal position for hours. Sometimes I'm fine the next day just tired and other times it takes me up to 4 days to recover. The doctors can't decide if this is related to IBS or if it could be because of very frequent UTI's or because of dermoid cysts :rolleyes:

Sorry, edited to add I was prescribed Protonix by my PCP then my Gastro doc (who was a moron) said that I shouldn't take it anymore because it wasn't working for my form of IBS, I felt like it was working fine but I gave her the benefit of the doubt. Months later my hubsband pointed out that I was back to running to the bathroom after dinners out that maybe the gastro doc didn't know what she was talking about. Sure enough, called my pcp went back on it and haven't had a serious episode in awhile.

Embarrassing Moment: Went to David's Bridal with my Mom and my niece (JR bridesmaid) for my nieces dress fitting and spent the entire time in the bathroom, and it was over a 2 hr appointment. :mad:

Katie

[starlet35]

I have been waiting for an official diagnosis for the past 3 or 4 years - I've lost track...Some doctors have felt I have crohn's and some have said IBS when they couldn't figure out what was wrong. I've had some elevated lab tests over the years and abnormal CT scans but nothing shows up to definitively diagnosis it. I am getting my 4th colonoscopy in a few weeks. I have been taking crohn's meds - pentasa - which helps somewhat but does not make it all go away. I also developed bone/joint problems in the past few years so have to get an IV treatment for that every few months. Has anyone experienced this? I'm so glad this group was started because it's not something you can really talk about much in real life since most people just don't understand.

[ctjo]

Hi, I have Ulcerative Colitis and take Asacol. Asacol really keeps it under control, but I just hate taking medicine every day. I suppose it's better than the alternative...

[colz85]

I'm Colleen and I have IBS-D. Have probably had it since college.

Right now I'm going through a mostly good period. It's been far, far worse.

I took Lotronex when it first came out, before it was taken off the market. Worked GREAT. Stopped taking it when it was removed from market, and when it came back under VERY restricted conditions, I was in a good period and didn't need it. Total life altering drug.

Like everyone else, I hate the sudden need to run to the bathroom....because it happens at the WORST times. Like, once when I was at Graceland, of all places....

[camberne]

Hey Colleen!! Nice to see you over here!! :)

[eponymous]

I'm Kitlyn - IBS. Ugh. I suffer mostly from the D-form, which I can keep under control with a strict diet, for the most part, but that makes me suffer from the C part. There's just no winning!

[eli1126]

I have been on Asacol for the Crohn's, but it didn't really do too much. I am supposed to be taking Pentasa 4 tablets 4 times a day!!! :eek: But it actually makes the diarrhea worse, if you can believe that :rolleyes: I also get so pissed when I am going in a public bathroom and courtesy flushing when women walk in and make the "It stinks in here" comment. Hello, it's a bathroom :p

Beth

[Jennifer]

I'm Jennifer - and my docs have always said I have IBS (D version I suppose)...I've tried a few treatments - but don't think they really helped much...there is some talk of it being Colitis instead (in addition?) - but I haven't been excited about doing too much investigating :(

I'm never positive when it will hit - usually inconvenient times...but I now know the circumstances that guarantee an episode - usually day 2+ of a business trip - or hot soup and red wine dinners - ugh! Thankfully I have more trouble at night than during the day.

I'd love to know what works for others to keep things under control - my doctor hasn't been very helpful (I guess a GI doc is a must...)

[Katy]

:bump:

[villanelle75]

Hi. I dont' know what I have, and maybe I don't actually have anything. reading this thread makes me feel fortunate because my sypmtoms aren't nearly as sever as many of yours.

I've had two episodes of horrific cramping and a great deal of bleeding, and on colonoscopy that found "patchy redness on my sigmoud colon". Biopsy on that tissue cam back "non-specific". I also get fairly frequent (several times a month, often right before or after my period) diarrhea and cramping. I also vommit occasionally (a few times a year) for no apparant reason.

I've tried keeping track of foods and looking for triggers, but there doesn't seem to be any pattern.

I just recently really sat down with my doctor and talked to him about all this and he took blood and is having me turn in some fecal samples. I'm actually afraid to pursue it because sometimes I think I don't really want to know if there is something wrong, but I'm forcing myself to follow through. Both colitis and chron's have been mentioned but from everything I've read on them, honestly I just don't seem "sick" enough. Anyway, fingers crossed that they find something, it isn't serious, and it can be "fixed".

[eli1126]

I'm actually afraid to pursue it because sometimes I think I don't really want to know if there is something wrong, but I'm forcing myself to follow through.
Posted by: villanelle75

Even though it is scary to have to go through countless tests, it is so important to stick with it and don't let up on your Doctors! I remember getting my Crohn's diagnosis and crying because, even though it's not pleasant, I knew what I was dealing with! Good Luck and Keep Us Posted!!

Beth

[Katyanne]

villanelle75
I agree, don't give up its nerve-wracking and very stressful but its such a relief when you finally find outwhat the problem is.

This really isn't gastro related but on Sept 26th I'm having surgery to remove a cyst in my ovary and they're going to do another procedure as well. Apparently the cyst is growing at a rapid rate and even though they don't confirm its the cause of my pain they won't know for certain until they do surgery. They also want to remove it before we start TTC because it could be unpredictable during a pregnancy. I'm scared but interested to know once its removed if those painful episodes stop. I've done research and dermoid cysts can twist causing extreme abdominal pain and hours of cramping.

Katie

[jessied1025]

Hi Ladies,

First I would like to say that I am sorry that you are all going through this. I personally do not have any gastro related issues, but my DH and his family have a lot of them...mostly in the upper GI track. Sorry if this gets a bit long.

BIL - diagnosed with celiac sprue disease and severe acid reflux about 6-7 years ago. The best way to describe celiac is a wheat and gluten allergy (even though it is not really an allergy). It will be 2 years in August that he was diagnosed with cancer of the esphagus. When they found it, it had already spread to his brain, liver and lungs. He is currently on chemo treatments and will probably be for the rest of his life. The sad thing is, is that is he only going to be 40 in August.

SIL's - diagnozed with celiac sprue and severe acid reflux. Both have barretts esophagus and one has a hiatal hernia.

FIL - had barretts esophagus and severe acid reflux. This past winter they found cancer in his esophagus. In February he had an esophagectomy (removal of the esophagus and pulling the stomach up in is place).

MIL - has celiac sprue (but can be in denial about it).

DH - has acid reflux and currently has an ulcer at the bottom of his esophagus. In the last 4 months he has had 2 endoscopies and is scheduled for 3rd in September. They are hoping that the ulcer will heal and they will be able to get a better bioapsy of his esophagus to determine if he has barretts. He has been tested for celiac sprue (both through blood and bioapsy of the bowel) and it came back negative.

Currently DH is on prelosec for his acid reflux. Since being on the medication he does not have as much heart burn and bathroom issues. We have also tried cutting out the majority of foods that bring on the heartburn and acid reflux. Such as tomatoe sauces, certain spicy foods, dark beer, etc.

A lot of the problems mentioned have just been diagnosed in the last couple of years. It has really made us more aware of our health and to hopefully prevent the types of issues that DH family has from happening to him.

[eli1126]

Wow jessied1025! You're right that though it is horrible that your DH'S family is going throught this, it gives your and DH the head's up to be proactive with his healthcare and any children you have!
Katyanne Sorry to hear that you have to have surgery..Not fun at all :( Keep Us Posted!

Beth

[HSSweethearts]

jessied1025 - I really want to thank you for your post. I've had severe acid reflux since college and was diagnosed with Barrett's shortly after that. I've never known or heard of anyone that has had this, and for some reason it has always felt like a "not real" disease if that makes any sense.

My brother and cousin are both doctors and stay on my case about taking good care of myself and have put the fear of God in me. So I do take my medicine every day. I used to take Protonix, but that was expensive and (TMI) made my pee unpleasant, so my doctor allowed me to switch to Prilosec OTC, which I like a lot better. Once I got disciplined about my medication, my symptoms disappeared.

Anyway, your post really brought my condition to life, and showed me how very, very important it is to continue to maintain good health for the rest of my years.

I'm so sorry that your family has been so severely and tragically impacted by this. :(

[villanelle75]

I have a hideously embarassing question. At my last Dr. appointment when I finally worked up the nerve to discuss my issues and persue soem answers, in addition to tkaing blood, he wanted to do a fecal test to see if I tend to have blood in my stool outside of the occasional episodes of bleeding I've had. He gave me a card to smear samples on. I put it off a bit then fianlly did the first one, itw was several or more days between each of the four samples because (TMI!!) I usually am at work for my BMs and couldn't exactly take care of ti there.

I finally finished them a few days ago. But I'm afaird to turn them in because the first ones are so old. Do they "go bad"? Will my doctor think I'm a filthy person for having had them sitting around my house for several weeks? I feel like an idiot but I really do want to see this through and need some reassurance that I shoudl still turn them in. As I write this I see hwo stupid it ounds, but I'm just so embarrassed. Thanks for any input!

[camberne]

I was always told to take my samples in the day I took them. Don't know if that's a requirement though.

[jessied1025]

Katy I am sorry to hear about your surgery. I hope everything goes well.

HSSweatheart You are very much welcome. I was unsure if I should post in this thread, since I don't not personally have GI problems. But these types of issues have really effected my life in the past couple of years and I believe it is important that people are more aware of them.

I am sorry to hear you were diagnosed with Barretts. You are very lucky to have family members concerned about your health, because these can lead to very serious health problems later on in life. Prilosec is a god scent, it has really helped my DH. He is not as gasy or have to use the bathroom as frequently. I think he also enjoys eating more knowing that he will not have the sideeffects afterwards.

villanelle75 Hmmmm, I am not sure. I would assume that a couple days would be fine, but as for a couple weeks it might be too long. I know in high school I had to take a fecal test, can't remember exactly what is was for, but it was a couple days before I took the samples back in. I know it might be embarrasing, but maybe just call and talk to a nurse and see what they might have to say. Hope it works out! :)

[eponymous]

So how is the heat and humidity treating people? I forgot to drink sufficient water, so I was both dehydrated and unable to go to the bathroom, since water is so important for that. I also ate two pounds of blueberries in one day... ugh! What a mistake! :eek:

[jenji]

wow, nice to find you all!
I can relate somewhat with jessieD My DH and his family have the GI problems.

I'm Jenn and my DH is Brad. He had IBS and severe GERD. His dad has Barrett's Esophagus, so Brad is trying really hard not to get to that point. He currently takes Prilosec OTC daily and takes Levison for the IBS when he has flair ups
I guess I'm just wanting to learn more about both because DH's doctor doesn't seem too concerned about either problem, but I hate to see DH in pain. the GERD is pretty well under control as long as he avoids spicy and acidic foods, but the IBS is so irratic and I know nothing about it

anyone care to inform me? :o

[scorpioanne]

Hi, my name is Anne and I have IBS - (now you all say "hi Anne")
I have had problems with GERD but don't really seem to now. I have way less stress in my life so neither of the conditions have been a problem lately. 3 years ago I was working on my master's thesis and had diarrhea for 6 weeks but found a drug that I don't think was around when I was first diagnosed 9 years ago. It is called Dicetel and I found it really helpful.
I was terrified that I would have problems with diarrhea on my wedding day but I took some Dicetel and that seemed to nip things in the bud.

I think there are some foods that make things worse and I think too the really hot weeather makes things worse...has anyone noticed this?

[heather1029]

Yay, a group for me! I have Celiac disease. Anybody else have this? My intestines can't process gluten, the protein in almost alllllll grains. Wheat, rye, barley....

[DianaFaye]

It's great to see that I'm not alone! I've been near tears the last couple of days. I have IBS-D and my triggers are mainly food and stress. Right now, I'm really frustrated with my body. :( I haven't had a good day in a long time now and it's unbearable. The sudden need to run to the bathroom is just awful and the cramps make me double over in pain. I'm trying to keep my stress levels down but it's hard to do with the wedding coming up, being out of work, worrying about finances, and other health issues.

My mother and my brother also have IBS-D.

When I used to work retail years ago, I'd have weeks where I was so sick that I could not go into work or if I did, I'd be running to the bathroom constantly. It was so hard to explain to my boss that what I had was an actual health problem. She just thought I was making it up and called me lazy! Grrr.

[heather1029]

I'm convinced a lot of people need to take the celiac disease blood test. I was diagnosed as IBS until they realized i just needed to stop eating foods containing gluten! And gluten is in practically everything!! I was always running to the bathroom and getting migraines too. I was also anemic. Now i'm 100% healthy (unless I eat a sandwich or cookie!)

[jenji]

What are the different types of IBS? I've seen some people talk about IBS-D and was just wondering what that means and what the other kinds are

[Mandos*Bella]

Hi I am Amber, 22 and have IBS-C and what I believe to be a bleeding Ulcer/acid reflux issues.

Have had problems with IBS since 15 or 16, at first no DR's took me seriously...telling me to eat more fiber, etc. Anybody with IBS-C knows that this isn't the answer. It's frusterating because you have to plan your life around your stomach issues (will I have an "attack" today, should I not eat this, etc..)

Having a scope done soon to see if in fact it is an ulcer causing so much pain and discomfort in there, but can I just say I am scared $h!tless! I know it's a common procedure, but I am still mortified about a scope going down my throat and being put to sleep, and of course, just what they will find.

Can anyone share their "Scope Stories" with me?

[Sare79]

I'm Sarah and I have IBS as a result of my fibromyalgia, and my FH has Crohn's. 4 years ago, he had three feet of his intestine removed due to blockages.

Highlights for us include fighting for the bathroom, spending New Year's Eve in the hospital due to a blockage for him.
I swear we have kept immodium in business! :)

[mrstim]

Hi all!

I've not been to the doctor for this in a long time - but I was diagnosed with severe Colitis when I was 4 years old. I was in the hospital for a few weeks, and it seemed to be under control until last year, when I began getting very sick after every meal I ate. I chalked it up to stress, since my now husband and I then broke up. - Welp, it's back!


Hopefully I will soon be able to have a cause for the way I am feeling and a new challenge to find out what works for me.

thanks!
a

[apoppy]

Mandos*Bella ~ I had an endoscopy done several years ago, and like you I was so scared.

I had never been put under before, so I was scared about that. I can honesty say that it wasn't nearly as bad as I thought it would be. I was somewhat awake during the process--it was very dream-like actually, I remember looking up at the lights in the hospital hallway and thinking it was like a movie :rolleyes:. Anyway, it wasn't difficult to swallow the scope at all (and I didn't feel it when they pulled it out either). I was awake enough to look at the whole process on the monitor, but I think I was zoning in and out then because that is not very clear in my mind. After it was all over I had a minor sore throat, but it was gone in a day or so.

You will be fine. :)

The best part was that after it was done, they were finally able to figure out what was wrong with me and treat it. I feel much better now. It was worth it.

[ejs]

Amber, I had an endoscopy a few years ago. I was severely freaked out beforehand. The dr told me I wouldn't be put completely under; instead I would be in a twilight phase. He said that I had to be partly awake so that I could swallow the scope. I flipped out when I heard that. I was convinced that there was no way I could force myself to swallow a tube. I begged to be put all the wonder, but he insisted that they don't do that because you can gag.

The day of, I was a mess. I went in to the procedure room and they started the IVs. I remember that one was a relaxant, but I don't remember what the other one was for. I do remember my anxiety melting away. The dr came in and I know I was loopy while chatting with him. He explained the procedure to me again. He said that he was going to spray an anesthetic in my throat. I opened my mouth and he sprayed. It was banana flavor. I HATE banana. I remember saying, "Yuck. Banana."

The next thing I knew my DH was standing next to the bed. It was over and I didn't remember a thing. One of the IVs they gave me had a sort of amnesia-like effect, so I don't remember anything about the procedure. I guess I asked my DH the same question over and over in the recovery room and on the way home. I also tried to convince him to drop me off at the smoothie place and I would walk home on my own. He didn't go for that. He brought me home and I crashed for hours.

I had a tiny sore throat that night, but that was it. So to sum it up, I was crazy with anxiety beforehand. But it really wasn't that bad.

[mrstim]

Let's try to revive this thread!!

I have IBS - I've found that wheat products and actually potatoes are my main trigger foods - and trying to live without eating anything from those foods is a major eye opener!!! I also can't eat anything even remotely spicy or hot.

Does anyone have any tips on how to eat w/o wheat or potatoes? What are ya'lls foods to stay away from?

a

[jessied1025]

Thought I would *bump* this thread again! :)

heather1029 my DH's family has celiac sprue disease as well. I posted on page 2 about their issues and problems with teh disease. I totally agree with you that more people should be tested for it, because it is commonly misdiagnosed.

Update...my DH has had 3 endoscopies in the past 8 months, due to his family history. The latest endoscopy indicated that the ulcer in his esophugas has healed, but there was some abmornal tissue - which they are thinking is barretts esophagus. The doctor also was able to confirm that he does not have celiac sprue. He is currently been playing phone tag with the nusre to get the test results back from the biopsy. The doctor increase is dosage of prelosec OTC from once to twice a day along with a baby asprin. He has been feeling pretty good and able to eat foods that he couldn't in the past.

Hope everyone else is doing well! :)

[eponymous]

What are ya'lls foods to stay away from?

My single biggest problem is vegetable oil. It's easy to avoid when I cook, but it's very hard when out, especially when dining at someone else's house or something like the food provided at a volunteer event. On the other end of the spectrum, cherries (my favorite food!) and blueberries (my other favorite food!) are bad. I've been trying to eat an insane amount of fiber and it seems to be helping. I've also found that, after two years of avoiding ANY trigger food in ANY amount, I can eat some of them again, which has been very nice.

[LoveBeingAMommy]

Hi there! I just found this thread and wanted to join.

Here are my stats:
Name: Peyton
Diagnosed with: Crohn's Disease June 2003
Medication: Entocort...I was on Pentasa (4 pills, 4 times a day), but it didn't work. Now we're trying Entocort. It's not much better.

Fortunately, I haven't had any surgeries yet, but I do get some temporary blockages. They are sooooo painful! Most days, though, I have some pains where the intestine is narrowed.

[tigerest]

Good thread.

I have always had some kind of stomach problem. As a child I was always constipated. ITs seems to be IBS, but not doctor knows for sure.

I am very skinny because of my constant stomach problems, I mean there is so much I can't eat. I went to a specialist and he told me it was not IBS. That that is just what DR's say when they dont know. Well he ended up finding an ulcer. Put me on Nexium! WHAT A LIFE SAVER! Had no episodes while on it and gained 8 pounds! Nice.

Went off it, immediately lost the weight and started having bad D episodes. Went back to the Dr. Told me it couldn't be the ulcer cuz we already treated it, it must be IBS. Sigh....convinced him to give me more NExium. BEen on it for a month and a half and gained 12 pounds. Decided to try prilosec instead, lost 3 pounds, and had constant heartburn. SO I am back on Nexium. So weird.

So besides the nexium, Bentyl has been a lifesaver as well. Its sort of a muscle relaxer for your stomach. You take it during an episode, it take about 30 minutes to work, but then it stops it. I also have anothe drug that I take and it disolves on my tongue, it stops the cramping right away but only lasts like 3 mins, and end up in the bathroom anyway. But both of those help me when i am on trips or out in public.

I am scheduled for a colonoscopy, and I am terrified of that. :( Anyone had one and care to share?

[ctjo]

tigerest - in case you haven't had your colonoscopy yet, I just wanted to let you know that it's no big deal! I was terrified and everything was just fine.

The day before you'll have to fast (only eating clear liquids, broth, etc.) and then the night before you'll have to drink some gross liquid that will...ahem...clean out your insides. I had heard that this part was the worst, and had several books/crossword puzzles/etc. all ready in the bathroom to keep me occupied. To be honest, it wasn't too pleasant, but it wasn't THAT bad.

The colonoscopy itself? Really no big deal. They put you to sleep. I remember the anesthesiologist talking to me, and the next thing I remember, I was being walked back into the recovery room. And the "recovery" was no big deal either - to be honest (warning - possible TMI) I wanted to go to the bathroom right away because they use KY Jelly on the "instrument" and I just wanted to "clean up." Other than that, I felt, to be honest, a little drunk. I'd say the anesthesia was completely worn off after 30-45 minutes.

THEN, I was REALLY hungry and pigged out!!! Which was actually kinda fun - I had no guilt whatsoever because I knew I was empty inside.

Good luck! If you have any other questions, let me know.

[tigerest]

ctjo - THANK YOU SO MUCH!!! Its on Monday and I almost cancelled it. So working the next day is ok? Were you sore....like from the instrument? I am a little worried about the anesthesia, because I always have bad reactions to it, but I have the whole day off to recover from that. I guess I was more worried about walking/sitting after....if you know what I mean. than you though...I have been really worried.

[Elenna]

I'm coming to this group late.

My whole family has gastrointestinal diseases.

I have IBS-C. The symptoms started in college. I had days where I would be doubled over in pain and hardly able to walk.

My sister as Ulcerative Colitis. She first started getting symptoms when she was 15. She hid it until she was 18 and got too sick to hide it anymore. She can't have any cassien (sp?,milk protein) or red meats.

My brother has IBS-C. His symptoms started in his early 20s.

My dad has Crohns. He has parts of his intestine removed, but I can't remember how much. It was a long time ago.

My mom has diverticulitis. She started getting symptoms after she hit menopause.

It is pretty embarrassing sometimes to have IBS. It seems some people can't understand that you need to get to a restroom NOW!

I have a lot less problems with it since I became vegetarian. I don't eat much dairy now either, not a conscious choice, I just notice I started eating less and less of it. Other than that, I don't really watch what I eat.

[ctjo]

tigerest - no problem at all! I know how scary it can be, but it's really not that bad.

I had no problems at all working the next day. I was not sore at all. No problems sitting, etc. At the time, my commute was 1.5 hours in a car, and it was a-ok!!! I was surprised that they could put "that" "there" and everything would be fine - but it really was. Plus, and forgive my bluntness, they really lube it up, so to speak.

The doctor did mention that I might experience some minor bleeding (like, when I went to the bathroom) but that never even happened.

I had no bad effects from the anesthesia. I had never had anesthesia before my colonoscopy - to tell you the truth I was more scared of the anesthesia than anything! I'm not sure of this, but I do not think they use a very strong anesthesia for this - I was only "out" for 10 minutes. It's not like having an operation where you are out for a few hours.

Elenna - I'm so sorry to hear how much your family has suffered with GI problems! Does your sister take anything for her UC, or just control it with diet? The Asacol works really well for me (no flare-ups, etc.) but I wouldn't mind getting off of it if I thought I could control the UC with diet. The doctor has never even mentioned this to me, and I wouldn't stop medication without talking to the doc, but I'm just curious.

[Elenna]

I'm not sure what the name of the medication is that my sister takes. I know she does take it and faithfully. If she doesn't she gets flare ups. She does have to stop taking it during pregnancy and while nursing. That's all I know.

ETA: She watches her diet very carefully. She can't have anything with cassien (milk protein) in it or red meats. Even on the medication, if she eats those things she gets very sick. Technically she shouldn't be eating any meats, but she likes her chicken and turkey. The chicken and turkey don't bother her that much.

[LandR02]

Count me in! :rolleyes:

I have IBS - combo form. The IBS-C is the most prominent, but I also have periods of IBS-D. It was diagnosed a few years ago, but these problems started for me in high school.

My grandmother, father, and brother all have Crohn's. Both grandma and dad have had the resection twice, and my brother just recently had his first resection. I was in the hospital with him, and he was in horrible shape after the surgery. I can't even imagine....

My father's sister, my aunt, also has IBS. I think it's interesting - although there is an established genetic link for Crohn's, my GI doc insists that there isn't a direct connection between Crohn's and IBS.

Anyway, i've found that I've had to dramatically alter my diet. The worst foods for me are:

red meat
dairy products (cheese, milk, etc.)
foods with dairy mixed in (e.g., mashed potatoes)
fried foods (but I refuse to give up french fries completely!)
coffee
beer
red wine :mad:
broccoli
corn
salad

My GI doc Rx'ed me a medication called Levsin, which is an anti-spasmodic. It has dramatically helped me with the horrible, painful belly cramping. Even though i still have several of the other symptoms, they don't seem as bad when the cramping is gone....

[ctjo]

tigerest - did you have your colonoscopy on Monday? How did it go?

LandR02 - welcome, I guess? Or should I say, sorry you have IBS? ;)

Elenna - Interesting about your sister. I often wonder if I have a mild case. Since going on Asacol, I have no problems. I eat whatever I want, etc. I think I'm pretty lucky.

It's interesting to read the family histories here. There is no history of lower gastrointestinal illness in my family. My dad did have a stomach ulcer though.

[starlet35]

I have had GI problems for over 3 years now I think. I still haven't gotten a diagnosis although they are leaning towards crohn's. Has anyone else gone through this? I have been taking pentasa for a few year and that seems to help but it doesn't stop it altogether. I also have developed a problem in my bones in the last few years and they feel it is related to my GI problems since it is an inflammatory problem. The hardest part so far is dealing with the pain, especially from the bone problems. In order for that to get better they have to treat the underlying condition I was told. I have tried a ton of the medications out there but so far nothing has just stopped it completely. I have also had four colonoscopies, a few endoscopies, a few upper GI series, five CT scans and might be getting my sixth one soon, capsule endoscopy, bone scans, lots of blood tests, you name it. Can anyone else relate to this? If anyone has any questions on any of those tests feel free to ask because I remember being freaked out when I had to have them for the first time and there really wasn't anyone I could ask about them. None of them are really that big of a deal, just an inconvenience for the most part.

[LandR02]

Hi starlet - my 25 y/o brother with Crohn's has arthritic joints. The docs also say that it is due to the illness. It's obviously not due to his age! Unfortunately, I don't have any words of advice - but just wanted to let you know that you're not alone!

ctjo - Thanks for the welcome note! :)

[ctjo]

*Bump*

How is everyone doing in 2006?

[2 Crazy Pugs]

Just found this thread (thank god!). I have Crohns, diagnosed in 1996, had a foot of intestine removed due to a blockage. The worst part for me right now is that I can eat something one day and feel fine, eat it the next and I am sick. I also HAVE to know where the bathrooms are wherever I go, I have even called places before I go to find out where they are located in a store/restaurant/theatre.

Mine is flared up with stress, which seems to be alot lately, planning a wedding in June. But I have realized that exercise seems to help (reduce the stress), but its embarrassing to have to get off the eliptical because I need to go to the bathroom.

And no one seems to get it when I say "I need to go to the bathroom NOW"...

[allyray231]

Hi there--my DH was just diagonsed with Acid Reflux and I am trying to find some recipies for him. Anyone have any good ones or links?

Thanks!

[eli1126]

Hi Allyray! I would check out web sites for recipies, but would try to stay away from spaghetti sauces, gravy, spicey foods, and fried foods as well. I would also stay away from certain meats like pork or corned beef. Try chicken recipies that call for baking, broiling, or boiling the chicken (like chicken and dumplings). They are usually the easiet on the old digestive system! It's so hard because what works for some people doesn't necessarily work for others! It can be a really frustrating process to find your "trigger" foods :(

I haven't been here in a long time so I'll give an update. I was student teaching this semester and while that went really well.....
My Crohn's had a MAJOR flareup :( I had a colonoscopy on Nov 23rd (the day before Thnaksgiving). It revealed that I have TWO inflammations :eek: One in the same spot as always, right above the incision of my small bowel resect :rolleyes: and the other in my rectum! I was put on Enticort and they upped my Pentasa 4 pills 4 times daily. I was recently weaned off the Enticort and am *supposed* to be taking my Pentasa, but I was really nauseated last week and stopped taking it to see if my nausea would go away, it did, but I know I'll have to start taking next week when school starts for the Spring semester. Hope everyone is doing well in the new year! I figure that this thread may not be as busy because we're all in the bathroom :p Good Luck!

Beth

[lisainpink]

How did I not know this thread was here!??
Diagnosis: Chronic Ulcerative Colitis
Date: 1994

I was first diagnosed when I was 19. I was away at college and having some major issues with my gut (the usual- lotsa bathroom time, blood, muscus). I came home after being gone for 4 weeks and had lost close to 30 lbs (I'm 5' 6" and went from 125 to 97.) I went to see my GP who sent me to a Gastro. I had an emergency colonoscopy the next morning (on a Saturday) that showed lots of inflammation and a large ulceration on my transverse colon. I've had the occasional flare in the last 11 years.
My most recent flare was over the holidays (fun!) I am taking asacol and was on the usual steroids and doing much better. Anybody else get mouth ulcers right before or during a flare?
My Mom suffers from much worse UC than I do. She's been on 40mg pred., asacol, remicaide, etc. She is finally in control right now- and only taking Asacol. Mom also has PSC (Primary Schlerosing Cholangitis- about 20% of UC and Chron's sufferers have it.) The only real treatment for PSC is liver transplant. She also has lupus- which she is on Methatrexate for. All of her illnesses are auto-immune in nature. Just wondering if anyone else has family history like ours- with multiple auto-immune diseases.

[eli1126]

lisainpink That's terrible that both you and your mom have to deal with this! I am the only one that I know of in my family to be diagnosed with Crohn's...although some family members seem to think they have to have something like it, they have no idea :rolleyes: I do get sores in my mouth when I am in an active inflammation, but haven't had any in a few weeks. My eyes though are so dry and it's too painful to even think about contacts. I finally bought a cute pair of glasses, but DH wants me to look into the laser surgery. He's had a few friends and co-workers get it done and swear by it. My Doctor though wants me to go to an opthamologist (a real MD) because he said there is a eye condition that people with autoimmune disease are succeptible to and dry eye can be a symptom :eek: So I'll be getting that done hopefully soon!

Beth

[lil_geek]

I'm not sure I popped in here before.

I have suspected IBS. After close to 10 years of my complaining, my new DR. is planning on doing an entire gastrointestinal workup on me over the next few weeks. Ugh, a ton of stool samples, blood work and a barium enema.... anyone care to share their experiences with that? I can say I am NOT looking forward, but hoping to find 'something' that maybe we can treat/control.

I have yet to find any trigger foods. I don't consume hardly any dairy, and it doesn't seem to make a difference (in a day to day = episode) what I eat. I can eat fruits and veggies and have as bad of day as if I have junk. This morning my gut was going nuts before I ate anything!

[starlet35]

I have recently been diagnosed with crohn's disease after years of doctors telling me I had IBS, etc. None of my biopsies in my colonoscopies and endoscopies confirmed crohn's so it was tricky to diagnose. The Dr. I am seeing now examined me and I had fissures (I know TMI) in my rectal area in spots that would be from crohn's and I also have had some other things show up over the years on CT scans, blood tests, etc. that indicated inflammation in my intestines. I think the worst thing about it for me is the other problems that can go along with it. I have had inflammation in the lining of my bones for a few years now that is caused from the inflammation in my intestines and now I am having hip/back pain regularly. I don't want to know that someone else on here is suffering too but it does help to know that I'm not alone since I don't have any relatives or friends with it and most people don't understand what it feels like on a daily basis. I take pentasa, darvocet as needed for pain, and just recently started 6-mp.

[eli1126]

lil_geek

Fruits and vegies are notorious for causing painful gas and diarrhea! Any type of roughage (sp?) generally tends to not digest well in people with gastro illness. It makes eating healthy harder, IMO, becasuse salad, fruits, & veggies aren't something we can eat regularly or at all :(

starlet35

I also have to deal with joint inflammations :( At times my knees and lower back kill me! My Doctor tells me to take Tylenol :rolleyes: Unfortunately, I have to take tylenol a couple times a day when it gets really bad.

Anyone purchase "Got Guts?" merchandise? On the CCFA website their is a store that sells merchandise to benefit Crohn's & Colitis research. I want to get a baseball t-shirt. But if it doesn't all go for research then I won't buy it. If anyone has gotten anything before from there, let me know.

Hope everyone is feeling ok today!!

Beth

[lil_geek]

Thanks Beth.... so, fruits and veggies agrevate, a lot of people find red meat agrivate..... Ugh!

I have been trying the higher fiber foods to try and regulate, and it works decent (an all-bran bar for breakfast everyday)... but now I notice if I miss that I am more likely to have an episode (weekends at the FIL's.... fiber is NOT a part of their diet!)

[starlet35]

I definitely have problems with veggies too. I haven't noticed it with fruits but I don't eat that much fruit anyway. I have problems digesting certain vegetables but sometimes I can digest them just fine. I gave up salad a few years ago because it always caused flareups and just wasn't worth it. I miss eating salad so much! I find that pasta usually doesn't bother me although sometimes the tomato sauce can hurt my insides, for some reason plain cheese pizza is almost always fine for me, and I can't go wrong with chicken. I have given up red meat for the most part since that can hurt the gut. If anyone has any other foods that work for them please let me know. I could always use suggestions. Hopefully more people will share their stories and give some suggestions!

[LoveBeingAMommy]

Starlet, I also have Crohn's and you're right, it's hard to describe to people what the pain is like. WARNING: too much information to follow! The flare-ups for me are horrible and usually happen at night...cramping (almost contraction-like), bloating, vomitting, constipation (followed by diarrhea the next day)..fun! Fortunately, those episodes are rare. However, on occasion, I do get a pain...feels like extreme pressure (probably gas)...just below my breastbone accompanied by bad back pain. If I lie down and wait for it work through me, it's fine. I've also found that heating pads help.

I, too, have given up salads. I haven't had broccoli in a while,and I try not to eat a lot of red meat. My doctor said to cut down on high fiber foods. Currently, I'm taking Entocort, and it seems to be doing a good job. I saw that you wrote you take Darvocet as needed for pain. For what kind of pain do you take it and is it effective? I have a doctor's appointment on Friday and am looking for something to have on hand for when I do have an attack.

[eli1126]

LoveBeingAMommy I have a few (ok a lot!) of questions about pg and Crohn's. Did you take any medication during the pg? I know Entiocort is out, but were you on Pentasa or Asacol? I also was curious about BF'ing? I eventually want to BF when the time comes and I don't know anyone else who has Crohn's and has children so I don't know if it's even something that can be done. Thanks for any info you can give me!

Beth

[starlet35]

I hope everyone's flareups are under control today...I had a CT scan yesterday so I'm still feeling the pain from the barium I had to drink. I really hate CT scans...About the darvocet someone asked about, it doesn't make all the pain go away but it helps me get through the day without tears and be able to work when the pain is bad. I take it for the bone pain I've had which is related to inflammation from crohn's. I didn't take anything for years until this summer and it is better to take it then suffer through the day. I take between 2-3 a day - 6 hours between each dose. If I don't need one I don't take one and there isn't any withdrawal, etc. from that. I am able to function fine at work with it - if anything it causes me to become a bit hyper but everyone's different. It can cause drowsiness but I haven't had that side effect. It also has tylenol in it so it helps with the low grade fevers I usually get. If you have any other questions feel free to ask. Is anyone on here taking 6-mp? I have been taking it for a few weeks and am wondering if anyone else has been on it before.

[ctjo]

Hi Everyone! So far I am having a good 2006. I saw a new doctor last October (I moved) and I was/am very happy with him. His practice seems much more "with it" than my old practice. Case in point - the new doctor wants the results of last year's colonoscopy. We've been calling the old doctor SINCE OCTOBER to have them sent. I think I'm going to have to just start calling them daily until they finally send it.

lisainpink - I don't have any family history at all of auto-immune disorders - I'm sorry your family is going through that. In a weird way, I kind of wish there was a family history - at least then I could have a "reason." Is that strange?

eli1126 - I am interested in LoveBeingAMommy's response to your questions. I can tell you, though, that I asked my new GI doc about Asacol and pregnancy, and he told me that it was completely safe, as are most Ulcerative Colitis medicines. Not that I am dispensing medical advice ;) but he gave me the go-ahead to TTC while taking Asacol.

[LoveBeingAMommy]

Beth,

I was diagnosed with Crohn's right before I got pregnant. At that time, I was taking Pentasa (4 pills, 4 times a day..can't remember the dosage). My Ob/Gyn said it was safe to take, but it didn't seem to do much for me. I BF'd my daughter, but eventually my attacks were so severe and frequent that I switched from Pentasa to Entocort. I had to stop BF'ing once I started taking Entocort. Those are the only two drugs I've taken for my Crohn's. We'll be TTC #2 later this year, so I'm going to ask my Ob/Gyn and GI about my options at my next appointment. Since my Crohn's seems to be "behaving" I may just go back on Pentasa. I hope this helps!

[eli1126]

Thanks! That's good to know when the time comes. I thought that being on Pentasa would make BF'ing impossible. I know that having to go on Entocort would, but they only put me on that when it gets really bad. This thread seems to be hopping! Like another poster said, I'm glad I have people to comiserate with, but definitely not glad that others have to go through it.

Beth

[LoveBeingAMommy]

I saw my doctor today. He's going to start weaning me off of Entocort and back onto Pentasa. For three months, I'll be taking both medications (one less Entocort pill a month). Then we'll see how it is just being on Pentasa. If I start having flare ups, then he'll see about putting me on something much stronger (but still safe) while I'm pregnant. Beth, it is nice having company on this, but I definitely don't wish it on anyone!

[eli1126]

LoveBeingAMommy Good Luck with weaning! I did it last month, but my Doctor had me do it in a matter of weeks and I think it would have been better over the course of a few months as you're doing.

Beth

[jessied1025]

An update on my DH's family:

A posted a while back about DH's family issues with acid reflux, celiac sprue and cancer of the esphagus (which was caused by the other 2 issues).

FIL & SIL's are doing fine. The prelosec is really helping all of them. FIL is back to normal from his esophagetomy last February.

BIL is not doing the best. A quick recap: he was diagnosed with esophageal cancer in August of 2003. When they found the cancer it already had spread to his brain, liver and lungs. From the tests and looking at his history they are pretty sure the cause of the cancer is being undiagnosed with celiac sprue and acid reflux for so long.

At the beginning of January he had a set back. The primary tumor on the esophagus starting bleeding internally. The bleeding stopped on its own, but BIL lost a lot of blood. They were able to get his counts and blood levels up. Last week he met with his oncologist to determine what chemo treatment would be next. Unfortunately with his loss of physical strength and the aggressiveness of the cancer chemo is no longer on option. Yesterday he met with a GI doc and a radiologist and there is nothing that they could do as well to prolong the cancer growth and his life. The doctors estimate with no treatment he only has about 2 to 5 weeks left.

The family is devestated, but hanging in there. He has faught for so long its just sad to know that he can no longer keep fighting. I just don't want him to suffer.

Anyway, if you could please keep my BIL and family in your thoughts, I would appreciate it. Thank you.

[eli1126]

jessied1025 Sending Prayers and (((Hugs))) your way.

Beth

[lisainpink]

Ctjo- That makes perfect sense. A reason would be nice. The flip side is feeling like there is a family curse. The first few months after my nephew was born, my Sister was always checking his diaper- she was so paranoid about blood in his stool. She finally calmed down though.

I hope everyone is feeling okay today.
I just wanted to say how glad I am to see others weighed drug therapies against TTC. I have been trying to decide what I want to do. I was in favor of tapering off asacol- and just going solo for awhile. My doc doesn't rec it though (thanks to that lovely flare in December and January.) I had a couple of bad days last week- so we'll see.

Jessied Just said a prayer for you and your family.

[jessied1025]

Hi Ladies,

I just wanted to let you know that my BIL passed away last Monday morning. Thank you again for all your throughts and prayers during this difficult time. I really appreciate.

[lisainpink]

Jessied I am so sorry for you and your family.:(

[ctjo]

jessied1025 - oh, no. I am so, so, sorry. My thoughts and prayers are with you and your family.

[ctjo]

lisainpink - family curse - I didn't even think of it that way! I can only imagine how your sister felt - that's terrible.

Out of curiosity - when were you all diagnosed? For me, I think I was around...say 25-26.

Does anyone else get the magazine from the Asacol people? I got it yesterday - never did before. Anyway, it had a section about various events for CCFA (Crohn's and Colitis Foundation of America) - things like symposiums, family fun days, dinners, etc. I've never been to any of these things, but I thought I'd pass it along in case anyone was interested. This is in no way an endorsement, etc. - like I said, I've never participated, but I found the concept intriguing. Has anyone ever gone? Oh, by the way, these events are on their website www.ccfa.org.

Hope everyone is doing well and has a great weekend!

[lisainpink]

I was 19. I was in the bathroom all the time, passing blood and mucous, and then I went home on a break and found out I had lost around 30 lbs.

[Maggie8202]

I have never been formally diagnoised yet, but have been going through IBS-C/D symptoms for about 3 years now. My stomach gets sooo bloated that it looks like I am pg, and the pain is just horrible. I feel that I go in waves between C and D, and the bloating is always present. My dr. put me on a low fiber diet, which helps and also zatac 2 times a day. I have also found that after I eat, chamamille tea works wonders when I am having flare ups.

Well the last couple of weeks I have felt that I am about to have a flare up, my stomach is distended and I am always full feeling but hungry. Anyways, my mom who has the same thing and has been officially diagnoised told me to get acupuncture. So today I went and as I was laying down I actually felt all of the gas break up. I got up and felt like a huge weight was taken off of my stomach. Best of all I just drank a coffee, and I didn't have to take a zatac immediately after to break up the "fullness" pain. I am going to go once a week and will let you know the progress. I thought that some of you might be interested in this. I went to a school clinic for acupuncture and the treatment was only $30.

[ctjo]

lisainpink-
found out I had lost around 30 lbs.
Whoa! That's a lot.

I guess I could expand on my answer a bit. I had symptoms (bleeding) and it freaked me out so I called the Dr. right away. It had happened to me once prior but I was on a business trip, and Immodium made it stop, so I kind of ignored it - dumb, huh?

Maggie8202 - very cool about your acupuncture experience. Acupuncture fascinates me - I look forward to hearing about your progress!

[heather1029]

I was 20 when I was diagnosed with Celiac Sprue.

I was constantly gaining weight despite my near anorexic eating habits. I would eat half a pop tart at breakfast, slim fast bar at lunch and a muffin for dinner. Regardless, my tummy would be huge and bloated and I'd get migraines. . .So I'd continue eating a little bit, but the problem was the gluten(wheat/barley/rye protein) I was eating.

My problem went on for so long without me being diagnosed that my tooth enamel went bad and I now have fillings on nearly every one of my teeth!

[lil_geek]

Heather - how did they diagnos that? I have long suspected that my suspected IBS is from a food sensitivity, but no doctor has given me any indication on how to find that out!

[heather1029]

I went to the gastro doctor and he did a blood test to check for the specific antibodies that will show up if you're gluten intolerant.

Make sure you are eating plenty of wheat, etc at least three months before the test, though, because if you aren't eating it, the antibodies won't be there!

If you get even a faint positive response, your doctor will probably tell you to get an endoscopy. Yuck.

[eli1126]

heather1029 Sorry you had to suffer so long before getting a diagnosis :( That's probably one of the worst things about these illnesses. I am supposed to be going in for a hydrogen breath test to see if I am lactose intolerant. I'll update that when I get the results. I bought a "Got Guts" t-shirt form the CCFA website and I was a little disappointed with the quality of the shirt. I know they have to make money on it, but it's really flimsy and I would have like something a bit more substantial to be able to wear it out. At least a Hanes quality t-shirt. Anyway, hope everyone is doing well!

Beth

[lisainpink]

bump for Newsjunkie...

[newsjunkie]

Thanks for the bump!

I was just finally diagnosed with IBS. I don't have constipation or diarrhea, just moderate to severe pain. My pain management doctor has been prescribing Mepergan (Demerol) and without it I seriously doubt if I would be able to leave the house. This is clearly not a long-term solution, though.

I have taken Zelnorm, Levsinex, another belladonna-related motility drug, Zoloft and enteric coated peppermint tablets. I have changed my diet to be low fat with lots of whole grains and cooked vegetables and I am trying to eat small portions more frequently (very tough to do). I am so desperate to stop hurting. I plan to eat nothing but soluble fiber for the next couple of days- white bread, regular pasta, Corn Chex, etc.

I also plan to look into hypnosis and acupuncture. Has anyone tried either of these? Were they successful?

This is such a frustrating disease and I am so tired of being in pain. I am newly engaged and should be having the time of my life...

[kithara]

I'm joining is as well. I was diagnosed with IBS last year and am waiting for my new insurance to kick in at the end of the month before I can look into my options again. I am interested in looking into alternative methods (non-prescription) to dealing with the pain and everything else. I need to look through my insurance choices to see which one is most supportive of these methods of therapy.

I absolutely hate feeling sick after I eat and rushing to the bathroom at a moment's notice. One of my worst fears is having an attack on my wedding day.

[lisainpink]

I have colitis- and did have a flare leading up to my wedding. I did not want to go on steroids right before the big day- thank heavens the flare eased up 2 days before the wedding.
I never considered acupuncture. If anyone tries it- let me know how it works out.

[Asha]

I have taken Zelnorm, Levsinex, another belladonna-related motility drug, Zoloft and enteric coated peppermint tablets. I have changed my diet to be low fat with lots of whole grains and cooked vegetables and I am trying to eat small portions more frequently (very tough to do). I am so desperate to stop hurting. I plan to eat nothing but soluble fiber for the next couple of days- white bread, regular pasta, Corn Chex, etc.

i haven't been diagnosed with ibs, but i constantly have severe stomach pains and gas. i find that eating lots of whole grains like you actually makes things worse. i also have to limit my intake of raw vegetables.

[eli1126]

I'm sorry to hear that not everybody is doing well :(

kithara I would be interested in alternative therapies as well. Let us know what you find out! I also had a flare-up during wedding planning and leading up to the wedding day :( I made sure to floow a strict bland diet and take my medicine and the day of the wedding I did take some immodium AD so I wouldn't have to run back down from the altar to the bathroom.

newsjunkie The pain is probably the most difficult part! Have you tested different foods to see if you have any surefire triggers? I know salads, raw vegies, and fruits cause painful gas and cramping. Fried foods go right through me and fast food......forget it! I tend to eat dishes with a lot of white rice or meat that is baked or broiled with no skin.

I hope everyone has a comfortable week. I'm not sure how many celebrate Holy Week and Easter, but I have to be very good with my diet as next Sunday we begin with a brunch and end with a big dinner :eek:

Beth

[newsjunkie]

I keep trying different foods and I can't find anything that doesn't make me hurt. I am now just eating corn Chex with Lactaid, white bread with organic strawberry preserves, and spaghetti with sauce as these tend to bother me the least. The pain has gotten worse and worse and my pain medicine has either completely stopped working or the pain is so bad that I would need something stronger. I am now waking up several times during the night with terrible pain and it is difficult to get back to sleep.

Called my GI today crying because I just don't know what to do. Waiting to hear from them. My GI is good but she only sees patients on Mondays so there is a two month wait for appointments. Doesn't really help when you are in acute pain. May go to the ER out of sheer desperation... I just don't know what else to do!

Has anyone been in this much pain? Is there anything anyone can do?

[eli1126]

newsjunkie Keep calling your Doctor! Yes, there is pain associated with these illnesses at times, but the only time my pain was as bad as what you're describing was when I had a partial blockage due to inflammation. I'm not trying to scare you at all, but you definitely need to get to your Doctor and have some tests done. Keep us updated!

Beth

[Scoutesina]

Newsjunkie, I just wanted to chime in and say ditto on calling your doc. I'm sorry you're having so much pain and just wanted to share my DH's experiences in case they might help at all.

My DH has Crohn's disease, which is similar to IBS (he was initially diagnosed with IBS 19 years ago), and has through trial and error come to see which foods he can digest the easiest, but his doc is very hesitant to give any dietetic advice since people respond differently to different foods. Like a PP said, whole grains can be hard to digest and he won't eat them at all (not even white rice, though he hasn't tried it in years due to bad experiences in the past, and I think it would be OK as long as it was cooked really thoroughly). Roughage = good for people with constipation problems, bad for ppl like DH whose food just runs through them. He eats a lot of simply-prepared chicken or fish recipes, plus potatoes (when he is very very sick, all he will eat are homemade mashed potatoes--made with butter or margarine & chicken broth but no milk or cream--plain white bread, flour tortillas, and Gatorade), plus cooked veggies. Cheese toast or biscuits with cheese can also be good since cheese is naturally constipating. Spaghetti usually makes him sick, as do most things with corn. So, some things that seem benign could be making you feel worse, but it just depends on the individual. He has also found it's easier on him to eat his bigger meal at lunchtime, then a lighter snack in the evening. The more frequently he eats, the more frequently he's running to the bathroom, so the small, frequent meal thing did not work for him.

He did try acupuncture along with some kind of specially concocted Chinese tea and it seemed to help, but then we moved from an alternative-medicine-type town to the boondocks, so he hasn't had access to that for several years. Hope that helps, and I'm sorry you're going through all this.

[newsjunkie]

Had some really bad pain yesterday evening- the kind that makes you groan or cry out on occasion. Fell asleep on the couch then woke at 12:30, felt terrible nausea and threw up. First time that happened. Spoke with my GI yesterday (before this happened) and she ordered some bloodwork (CBC, etc.) and I will see her nurse practicioner on Thursday. I guess she wants to 100% rule out Crohn's even though I have had 2 fairly normal colonoscopies in the past 6 months (some microscopic inflammation she said could have come from the prep). I do think it is *just* IBS but I haven't hit on a good treatment yet...

Feel terrible today, very, very tired. Not too much pain, though.

Wish me luck!

[jessied1025]

Hi Everyone,

Sorry I haven't been around this thread much, things have just been busy.

newsjunkie I am so sorry you are going through all this pain and discomfort. Hopefully the bloodwork will give the doctors more insight on what is going on.

Family Update:

Everyone is doing pretty good, since BIL's passing. DH will be scheduling his yearly endoscopy in the next week or so. Both SIL's are dong pretty good with their celiac sprue & barretts esophagus. FIL met with his doctor who performed the esophagetamy (Feb 05) and everything is looking really good. She did indicate he might have to have his stomach streched again in another six months, but not to worry about it now.

Take care everyone!! :)

[ctjo]

newsjunkie - I'm sorry to hear you're in so much pain! I will echo the others about calling your doctor. Complain, complain, complain! Hopefully you will find a treatment that works well for you.

jessied1025 - I'm glad your family is doing well. :)

kithara - have you made any progress on alternative treatments? I'd be interested to hear about it!

I'm doing well, the only problem now is that my doc keeps canceling my appointments :mad: It's not a big deal - this doc wants to see me every 4 months, so it was a just a routine checkup. But, twice now, I've had an appointment scheduled, only to get a message from the office staff that he won't be in and I need to call and reschedule. Oh well, things certainly could be worse.

Hope everyone else is doing well!

[Maggie8202]

Like I have said in the past, I have never been formally diagnoised, but do feel that what I have is IBS. My mom has, and we have same symptoms etc...
Anyways with this last flareup I had I went for acupuncture and it is great.I was being treated for the bloating, constipation, and soreness of my abdomen. I think I have gone for about 6 weeks now, and I actually had a piece of pizza for lunch and feel great! Usually right after each session I would feel great for 2-4 days, and then the period of time feeling good in between treatments has gotten longer. They also put me on some natural herbs about 3 weeks ago to take 2 times a day. I will not lie, this stuff tastes like dirt and I gag each and everytime I take it, but it works!
I found a student clinic by my house that offered these sessions for $30, so it has been great. I think with the benefits that I have gotten though, I would have paid $90 a session like so many places are.
Totally worth it, for anyone who wants to try it. My accupuncture person even told me that accupuncture does wonders for ibs, and she is right!

[eli1126]

newsjunkie Keep track of everything also!! How many times you vommit, go to the bathroom, when the pain is worse, etc. When you call your Doctor's give them this info and like another poster said: Complain, Complain, Complain! It annoys me to no end how the Doctor will get annoyed if you put it off, but they seem to treat every complaint as though it's nothing :eek:

Beth

[newsjunkie]

Thank you all for your kind words and support. I saw my GI's nurse practicioner on Thursday for my blood test results and consultation. All the basic test results were normal (CBC, kidney and liver function, etc.) except for the CRP and sed rate. I don't have the exact number but on the test results letter it said the CRP was "very high" and the sed rate was "unusual" (or something close- the handwriting was difficult to read). I had a UTI at the time so that might explain it but I wouldn't think a UTI would make a CRP "very high", especially since it was fairly mild as I went to the doctor at the first sign of symptoms. Does this sound right to you?

Also, I do not have diarrhea at all. I take Mepergan a couple of times a day for the pain and get mildly constipated but I take Miralax and it works really well. This Saturday morning I had diarrhea. I went about 3 times before taking Immodium. That was the first time I had diarrhea and I would have thought that with the Mepergan it would be very, very difficult.

Does all of this sound typical of IBS? I also have Grave's disease, an autoimmune disease. That has basically been under control for 14 years but I know that if you have on autoimmune disorders you are more likely to get another one- like Crohn's.

I have a call out to the doctor and am waiting to hear her reply but if anyone has any advice they can offer I would be grateful to hear it!

[heather1029]

Has anyone here ever gotten blood in the stool? I've experienced this three times this week and am getting pretty concerned. . .

[ctjo]

heather1029 - I have. Give your doc a call, and schedule an appointment. The doc will probably want to check you out. For me personally, Asacol does a very good job about keeping everything under control. When I've bled (twice in the past), Rowasa has done an excellent job of stopping it.

That is, of course, assuming that what you're seeing is red blood. If you have black, tarry stools, call your doctor now, like, log off the computer and call the doc. Page him, do whatever you have to. If you can't get the doc, then go to the ER. I don't want to scare you, but black, tarry stools are serious and can be the sign of a bleeding ulcer.

Based on how I've been treated by my doctor, red blood in your stool is serious, but not alarming. They have always wanted to see me, but never told me to go to the ER.

Good luck and I hope you feel better! Let us know how you make out.

Oh, by the way, the first time I bled was when I was initially diagnosed, and was accompanied by horrible pain. The second time, was when I decided to wean myself off medicine (bad idea). I bled, but had no pain at all.

[heather1029]

:( Just red blood, but darn. I was hoping you were going to say that it was harmless nothing

[eli1126]

:( Just red blood, but darn. I was hoping you were going to say that it was harmless nothing


Hi Heather! Yes, you need to call your Doctor. They may just have you go on a low residue diet (aka bland tasteless food) for a little while, but it could be something more serious. Good Luck and keep us updated!!

Beth

[heather1029]

I thought I was making a big deal out of nothing, so I didn't call my doctor....until today....when it happened again. I'm so frustrated I cannot even tell you. I'm seriously scared that all those years of not knowing I had celiac disease and spending weeks in constipation could possibly have caused polyps or cancer or some other long term problem.

Hi Heather! Yes, you need to call your Doctor. They may just have you go on a low residue diet (aka bland tasteless food) for a little while, but it could be something more serious. Good Luck and keep us updated!!

Beth

I think you're right about the diet....I am planning on cutting out lactose for the next few weeks, as well as anything with caramel coloring, sodas, and the veggies that make me gassy.

I've been feeling crampy for two weeks now and this is getting ridiculous. I'm pretty sure I'm going to get a colonoscopy...

[eli1126]

Hi Heather!
a
Yes, stay away from the veggies, they are just like fruits....ruffage! I also find soda can bother me at times. Good Luck!

Beth

[heather1029]

How is everyone doing?

I finally went to a gastro doctor about that problem and they couldn't figure out what it was. I stopped bleeding and all is fine right now.

I'd really like to stay healthy in regards to digestion for the next year, since I'd like to TTC in August 2007.

[eli1126]

heather1029 Glad to hear everything is going well right now and the bleeding has stopped. I (knock on wood) have been doing ok, except last weekend when I was in Rochester NY and ate at a hamburger place that killed me! Needless to say, I was glad to be back home and on bland food again! I also am trying to stay well for TTC reasons, I want to make sure I am able to have a trouble free 9 months when the time comes. Good Luck!

Beth

[Nikker]

Hello, new girl here!

June 2005 - I went to the ER for severe abdominal pain. I had a catscan and it showed my ilium inflammed. They automatically assumed Crohn's Disease. They did a colonoscopy and took tissue samples. Samples came back inconclusive but they still told me that I had it b/c I had most of the markers for it. A couples months later I stopped taking the Asacol (I mean who wants to take 6 pills a day?) My GI Dr told me that I could go have this blood work done that would tell me if I had it or not and that it was 99.9% accurate. So I went and had it taken and guess what it came back saying? NEGATIVE! So I go back to the Dr and ask "Can't someone have acute ilitus and NOT have Crohn's?" She said absolutely not and that acute ilitus was a symptom of ONLY Crohn's disease. I went to my regular Dr and he says more than likely I don't have it and my GI Dr sounds like a whack job. So a year has gone by and nothing has happened. I still have severe acid reflux and take Aciphex twice a day (Nexium made me sick) or Prilosec OTC if I forget to take the Aciphex.

I did get a scare this year in Feb. I thought that maybe I really did have Crohn's b/c I was in so much abdominal pain I was nauseous. But it turns out it was my stinkin appendix! LOL. So I had surgery and it was removed.

Anyway, that's my story.

[eli1126]

I'm going to call my Doctor tomorrow :( My stomach is on fire and everything is going right through me. I haven't actually felt nauseated, but just very bloated and uncomfortable. I was off for two months between graduation and the start of my summer job July 3rd and felt fine so now that I'm working of course the Crohn's acts up :rolleyes:

Beth

[summerbride2005]

Another newbie here! I have IBS-D and it consumes my entire life! I have had it for as long as I can remember. I am also lactose intolerant and have been for years! I used to have D everyday and then I finally went on medication. That worked for over a year, but didn't cure me by any means. I still had D every week or so but at least it wasn't every day. Then in January of this year I ate at P.F. Changs, which I'm usually okay with but this time was different. I had blood coming out with my D (sorry TMI) and the pain was horrible in my stomach. I was up all night, having pain like never before. I went to Urgent Care the next day, and then to my PCP. They set up a colonoscopy for me within the next couple of weeks. I was on a diet of saltine crackers, white rice and apple sauce. Anything I ate came right out of me no matter what. I was barely eating anything at work or at night for fear of being in the bathroom. I lost a bunch of weight, which I was already thin to begin with because of the weekly D. I was down to 107 pounds and I looked sick! I was happy to have a colonoscopy because then I would know what was wrong with me. I was already diagnosed with IBS before, so I knew that it had to be something else. At least I would know what the problem was. As I was waking up from the colonoscopy the Dr. said that I had IBS and I just started to cry! I was so upset because I knew that there was nothing that I could do for this. I still couldn't eat anything and then went on Levsin 3 times a day. It has helped so much!!! The problem now is that we want to TTC or see what happens very soon and I don't know if my stomach or the meds will be okay with a baby. I have gone down to 2 pills a day, and it's been rough on my stomach. I think if I went off of the pills I would be in trouble again. I'm pretty good about what I eat, no oil,butter, seasoning, hot food, sauces, pasta, etc. I'm very picky about what I eat, and still have to know where all of the bathrooms are at all times! My poor DH has to put up with this for the rest of his life. I'm just really hoping that we can TTC and I won't get sick all the time.

I agree that I don't wish these problems on anyone but it is nice to know that I am not the only one with these issues. Some of my friends know about my IBS, but they don't understand how it takes over your life and you have to worry about it every day. I love to eat, but it just hurts everytime I put something in my stomach. I can eat nothing and still have problems.

My mom has lupus and a few other things. She has IBS-C/D. My aunt has a food sensitive issue with her stomach, but not IBS. I guess certain things just run in the family.

Hope everyone is doing okay today.

[heather1029]

nkker: welcome!
eli: i'm sad to hear your problem is flaring up! Could it possibly be food poisoning or a virus? Do you know which foods/emotions/times trigger your Crohn's?
summerbride: Aw, i'm very sorry to hear all of your many horrible problems. My life was all diarhea until I turned 20 and we figured out that I have celiac disease. I wish the answer for you could be as clear as mine was.


my Dad has similar problem to you: lactose intolerant, no spices, greasy foods, sauces, and he's also celiac. Fortunately, he's able to stay away from the specific foods that bother him. I hope that oneday you can pinpoint which foods make your issues flare up.

[summerbride2005]

heather1029 - thank you. I'm hoping that I'll be able to find out what it is too. The GI doctor that I went to wasn't to helpful, other then telling me that I have IBS-D which I already knew. I might try to find a different doctor that doesn't diagnose everything as IBS. He wasn't even the one that gave me Levsin. He gave me a pill that helps with the D once it already happens. My PCP's are the ones that gave me the Librax a few years ago and then the Levsin this year.

Does anyone know if it is okay to have these problems and still be able to get pregnant/carrry to term? One of my PCP's freaked me out with saying that I might not be able to.

[ctjo]

summerbride2005 - I'm so sorry to hear you're not doing well!! I have Ulcerative Colitis and was told by my doc that pregnancy shouldn't be a problem, and that the UC meds I am on are safe to take while pregnant. I'd definitely discuss your concerns with your doc. I have heard that sometimes being pregnant puts IBS into remission - but I don't know for sure.

I'm doing ok. I was on vacation, and ate SO MUCH - when I returned I was not feeling so hot, but I've gone back to normal food intake and am feeling good now.

[lisainpink]

Pregnancy and GI I am 22 weeks pregnant and have Ulcerative Colitis. My Gastro stopped tapered my meds down when we decided to get preggo. There is some debate on which would be safe- so we went the no meds route.:o
I haven't had a flare since I've been pregnant. I have had constant diarrhea (but I have that even with all my meds) and some mucous- but that is about it. No blood- so I'm not too worried.
I do worry about Breastfeeding- I hope my colon behaves long enough to get through at least a few months before I have to re-start Asacol again.
One thing to be sure of- when I went for my first OB appnt- he wrote me a perscription for prenatals. After he handed it to me- he stopped- looked at my chart again- and then said "wait- no- give me that back!" He had written a prenatal that included a stool softener!:eek: :eek: I asked if he was trying to be funny.
Anyway- all my girlfriends complain about pregnancy constipation- not something I've had to deal with.
HTH.

[Mrs. Alting]

Another newbie:)

I always thought I had IBS, I have been to several doctors. Last year I had my Gal bladder taken out and thought that would solve the problem but I was still running to the bathroom after everytime I ate and would have sever gas pains. My family calls that (throw the purse) you know when you run into your house from your car throw your purse and run to the bathroom :)

Well I finally gave up on regular doctors. My friend went to a natropath and was diagnosed with celiac disease. She told me I probably had a food alergy and I should go see this guy. So I did 3 weeks ago he took a blood sample and a stool sample and got my results yesterday. Turns out I have a form of E coli. Not the kind that puts you in the hospital, but he said that I don't have enough good bacteria in me to fight off the bad bacteria so there is a war going on inside my body. Insead of my food digesting normally it builds up and gives me cramps or it makes me throw the purse:)

He asked me if I wanted a presription for medication or if I wanted to take supplements and go the natural way. I wanted to go the natural way because real medication has not helped me so far. I am taking one right now to kill the Ecoli and then I will be taking one that gives me new and wanted bacteria in my body. This process should take about 5 to 7 weeks. We will see how it goes. Wish me luck!

[eli1126]

Unfortunately, it's not food poisoning :( Even though that's not fun, it's better than having no end in sight. I am taking Pentasa 4 pills 4 times a day. I am set to go to the Doctor on July 27th, but if it gets worse I am calling to get an ASAP appointment. I hope they don't sugggest Enticort, it was so rough on me last time.

For all the new comers: I'm sorry that many of you are going through the frustrating process of finding a diagnosis. Hang in there!

Beth

[ctjo]

Pregnancy and GI I am 22 weeks pregnant and have Ulcerative Colitis. My Gastro stopped tapered my meds down when we decided to get preggo. There is some debate on which would be safe- so we went the no meds route.:o


Ugh - really? I HATE when there's no clear cut answer. :mad: My Dr. swore that Asacol is totally safe. Now I'm paranoid :o

How familiar is your OB with UC? I find that most of my other doctors seem kind of uninformed about it. Do you mind me asking what type of prenatals you take now?

[lisainpink]

My OB is very familiar with UC (his wife has 2 auto-immune disorders.) MY Gastro helped me choose my OB (I was diagnosed with UC at 19 and am 31 now.) I think having an OB and Gastro who are willing to communicate make all the difference in the world when you are dealing with something like this.
Asacol is pregnancy category B- so it is proven safe in rats- but there is no real data in humans. You have to weigh the risk to benefits. For me (and my doctor) it was a trial to see how I would do as I stepped down. To my great surprise- I'm doing pretty good.:)
I am on Cenogen Ultra.

[ctjo]

Wow, that's great that they have a good relationship. How often do you see your GI doc?

Sorry for all the questions - just curious. My old GI wanted to see me every year, which I never did. My new one said every 4 months. I am way, way overdue :o

Anyone else feel free to weigh in!!

I don't know if this is a loaded question or not, but was anyone else ever on Accutane? I have heard that UC is now listed as a side effect. I don't think I have any way of knowing that my UC is related to my taking Accutane, but I'll always be curious. It would be nice to have a "reason" for all this.

[summerbride2005]

Throw the purse sounds like what I do! I told my DH about your expression and he thought that it was great. Unfortunately, I wish I could stop "throwing the purse" all together.

I've been okay today (so far), just hoping that I can get some days where I'm not running to the bathroom.

Are many of you able to manage your UC or IBS through medicine? What happens if you stop the medicine all together?

[lisainpink]

When I am healthy- I only see my Gastro every 6 months. If I am having a flare- I see him every month until we get it under control. So yeah- get yourself in there- and asap!! ;)
I have never taken accutane. I looked up the PI on Roche's website and IBD is included- and colitis- but not Ulcerative Colitis. A link would depend on your (and your Gastro's) view. My Gastro considers UC a true auto-immune disease- completely separate from IBD. It may be worth discussing on your next (hopefully- very soon) visit.
The only time I have ever stopped all meds it has been through a careful process of stepping down the dosages. I have had several month stretches where I have been med-free.

[eli1126]

That's something I wonder about as well. When I am feeling fine, should I be going every 3 months, 6 months, or once a year? I feel like every time I go there they're telling me I should have gotten there earlier :confused: I was there in February or March. I am feeling a little better, I bought Prilosec OTC which seems to be helping the acid reflux, but I am still using the TUMS after eating sometimes too. Hopefully, this week will be a little better than last week.

Beth

[jessied1025]

Hi Ladies,

Hope everyone is doing okay.

DH's family is all doing well, which is great. DH has is annual edoscopy scheduled for sometime in September.

Well it looks like I might have some GI issues as well. We have been TTC since September 2005 and I have been off the BC pill since end of July 2005. Since I have been off the pill I get really constipated every month, usually around the time I am suppose to ovulate. Last fall it was so bad one month I scheduled and appointment with my RA who preforms my annual examination. TMI, but it turned out I was full of crap & gas...literally! They recommended some OTC medication and that helped. I still get constipated every month, sometimes one month is worse than others. The last 2 months have been horrible, which I blame on being stressed (it was the end of the fiscal year at my job). I have been watching what I eat and drinking a lot more water, but even that isn't helping.

So at my annual appointment last week my RA recommended I go see a GI doctor just to get checked out. My appointment is scheduled for August 14th. I will keep you posted on what I find out.

[eli1126]

jessied1025, Sending good vibes your way! Keep Us Updated!

I went to see the Doctor today and they scheduled an endoscopy for three weeks. They also put me on Nexium and want to give it time to see if it's just acid reflux issues and if it doesn't cut it then I'll have the endoscopy. I also had bloodwork and a DEXA and lactose breath test scheduled :eek: Other than that I am to continue the Pentasa 500mg 2 pills 4 times a day. Hope everyone else is having better luck!

Beth

[heather1029]

Beth-I hope you get some answers. Endoscopies suck.

I had a flare up this past weekend....but mine was brought on by my own stupidity. I can't eat wheat, but I was in starvation mode from bikini dieting and I opened up DH's delicious cereal (chock full of wheat and oats) and had two handfulls. Needless to say, I lost all that and every bit of food I ingested for the full day after. Horrible. I'm still nauseous, bloated and headachy. I was so sick yesterday, I was ready to take an EPT. But of course, I knew it was just my celiac disease talking.

[summerbride2005]

heather - I'm so sorry about the flare up.

I've been taking 2 Levsin pills a day instead of 3 which I think my stomach has adapted to. I've also been working out a lot more for my vacation (bikini time), and the doctor told me that exercising everyday would help my stomach. I'm going to try 1 pill a day when I get back from Hawaii, plus start on prenatals. Hopefully I'll be okay in Hawaii, I don't want my stomach problems to ruin our time.

[eli1126]

Heather, sorry about the flare up :( A coworker was recently diagnosed with Celiac Disease and has been on the diet for about a month. She notices a difference in her stomach and digestion, but was hoping it would help her migraines. So far though, it hasn't.

Last night was the worst night in a long time :( I was bad and ate some things and drank some things :o I shouldn't have and I paid a hefty price. Namely, I was up all night on the toliet with terrible cramping and the other fun stuff! I have to get ready for work and I can't move. I am off tomorrow so I can sleep in but today is going to be a long day :(

Beth

[ctjo]

I went the the doc this morning - yay for me ;) Thank you lisainpink for the subtle nudges. Everything is fine - I was there for about 5 minutes. I don't know why I dread these things so much!

Hope everyone is doing well!

[eli1126]

ctjo Yeah for good news!

I went for my endoscopy on Monday. It wasn't that bad at all! The throat spray was probably the worst of it, but they had given me some good drugs at that point so even the spray was a big deal ;) My Docotor didn't see anything but tissue samples revealed gastritis which is too much acid in the lining. So I was glad it wasn't an ulcer or Crohn's in the stomach, but I was also glad that they found something because now I know what I'm dealing with and what I have to do. I have to continue the Nexium and watch my diet; nothing spicy, citrus, or acidic.

Hope everyone is doing well!

[diam124]

Hi everyone, I have a question regarding IBS symptoms. First though, my background - I was diagnosed with IBS-D shortly before my wedding. I lost a lot of weight in the 3 months before the wedding due to IBS/stress. I was prescribed Levsin, but I never took it. Basically I went for a long time without being able to eat regular things. I mostly ate oatmeal and some other foods like that. I couldn't handle breads or anything really dry. I had horrible bloating when I ate bread, like pizza. Also red meat gave me horrible cramps. After the wedding a lot of the symptoms resolved and I gained the weight back quickly. I haven't had many issues for the last 3 years (just the occassional flare-up but nothing that lasted a long time).

Now though I'm having some issues and I'm wondering if it's IBS since it's different than the last time. I've been under tremendous stress and my issues are frequent nausea and lack of appetite/early satiety. I also have been having bloating/gas. I do feel hungry but as soon as I start to eat I feel full very quickly. Lunch is usually ok, it's mostly dinner when this happens. Then I eat a snack before bed because I get hungry again. The nausea comes and goes in waves - maybe every other day or so. I can't really figure out what triggers it. Does this sound familiar to any of you? I think I do remember feeling full easily before, but I don't really have the painful cramps I used to. I had been taking a new multivitamin, so I stopped taking that in case it upsets my stomach. I also got nauseaus after taking Advil - which has never happened to me before. I took an HPT a few days ago just in case, but that's not the issue!

[eli1126]

Are you just experiencing the nausea? Or are you actually vomiting? Are you going to the bathroom regularly? When I was at my worst with the Crohn's, I was nauseated and vomiting several times a day. I was also bloated and looked as though I was three months pregnant :eek: When I went to the bathroom, I would only go a little and it was all-liquid :o I apologize for being so graphic. It turns out, I had a very serious issue going on and needed surgical intervention, but had I gone to the Doctor when I first started experiencing the symptoms, I may have been able to avoid it. If you are not able to take medications or eat foods that you normally do without feeling nauseated, then you should make an appointment with your Doctor. That way, if it is something different or even a flare up, they can possibly prescribe you a different medication or give you some diet advice to help you feel better. Good Luck!

[diam124]

Nope, no vomitting. We just returned from a tropical vacation and the symptoms started in the airport on the way home, so at first I thought maybe I picked up a stomach bug on vacation that I was able to fend off enough to prevent vomitting. Food doesn't necessarily make me feel sick - most meals I'm ok, I just feel full quickly. I also have LPR (silent GERD - no heartburn but lump in throat feeling, strained/damaged vocal cords, acid in throat) that is related to stress. It literally went away as soon as we arrived at our vacation and came back as soon as we got home, so that's why I think the stomach issues are also stress related. A couple times I have also had mini hot flashes when I start to feel sick, but those almost feel like mini panic attacks.

I'm having regular bowel movements, although I always tend to have some D and that hasn't changed. I just searched my symptoms online and they sound a lot like dyspepsia, which seems related to GERD, so maybe it's all tied together.

[tertia]

Hi, I'm new around here. It doesn't look like anyone has posted in this thread in a long time, but I'd thought I'd see if anyone was still reading. I'm Jennifer and I have been living with Crohn's disease for 10 years. I've been getting remicade infusions for 9 years.

[eli1126]

Welcome Jennifer! I also have Crohn's Disease. Do you find the Remicade infusions help? I only had one infusion treatment, but it was a long time ago. Currently, I take Pentasa 2 pills 4 times a day. Knock on wood, I've had a good year so far!

[MichelleRenee]

I am not quite sure what is wrong with me yet, but here I am.

I have had bad heartburn my whole life and was recently diagnosed with acid reflux. My dr keeps prescribing me meds that will work for 6 weeks or so and then stop working altogether.

I am scheduled to have an ultrasound on my gallbladder this Wednesday and an upper GI endoscopy on October 2.

I know (or at least I think) that most of my problems are caused by stress and my inability to wind down enough to get a good night's rest. I am also having a sleep test on September 4. I truly think that if I cou dlfind a way to de-stress I would not have all these problems but I am a worrier by nature.

My main symptoms these days are heartburn, feeling like my stomach is always full of liquid, lump in my throat, and occasional cramping in my stomach. I am also tired all the time. I am ready for one of these tests to tell me what is wrong with me so I can start working on feeling better!

[JennZ]

Hi girls!

I can't believe I never found you all before!! :)

I have Ulcerative Colitis and I am currently not taking any meds.
I wouldn't exactly say I am in remission, but the symptoms currently are manageable for me.
I was diagnosed almost 8 years ago, and have had been up and down with symptoms and meds since then.
Last year, when I was pg, I was taking 16 pills of Asacol, plus prednisone at the end.
I also had an IV of prednisone at the time of delivery.

So, really I just wanted to say that for those TTC (as we are again), you can definitely do it with active UC and still take meds that won't hurt the baby. (I did stop the Asacol to nurse, though.)

Hope everyone is finding ways to manage their symptoms!!

[tertia]

eli--yes they have been a lifesaver for me. Most of the time I feel normal. I only feel my symptoms when my remicade is due. I have been getting them every 7 weeks for a long time now and I was on 6mp as well. I recently stopped the 6mp because we are ttc and the remicade is not lasting me 7 weeks. I think I'm going to have to talk to my doctor and see if we can work something else out. It's been so long since I've had symptoms this bad I forgot how awful they are. :o

[silvergrey]

MichelleRenee, I haven't posted in this thread before but saw your post and wanted to offer some empathy. I have gastroparesis (http://www.mayoclinic.com/health/gastroparesis/DS00612/DSECTION=2), which has symptoms much like yours, and I know how frustrating it can be! It took me several years, every reflux medication in the book (none of which helped), 2 upper GIs, an endoscopy, and finally a gastric emptying study to finally be diagnosed.

I really hope you're able to get a diagnosis and feel better soon!

[MichelleRenee]

I had my ultrasound a few weeks ago and the results came back normal. My upper GI was today. It wasn't as bad as I thought it woud be. They did not find any ulcers, but they did find one spot that looked like I might have had an ulcer there at one time. they did a biopsy of my stomach lining so I should get those results in a week or so. They said that I do have acid reflux and gave me a Rx for Protonix. Of all the samples I tried that seemed to work best. We'll see if it stops working after a few weeks like all the others.

[tertia]

Well, it's true the remicade does not work for me anymore. I wound up in the hospital with an abscess in my intestines and had to have an emergency resection. Anybody else have a bowel resection before? I'm so disappointed. I never wanted this to happen.

[MichelleRenee]

So far so good with the Protonix. I haven't really had heartburn for 2 weeks now, which is AMAZING to me! I have had a little bit of nausea, but nothing I can't live with. I even gained back about 5 pounds already. It is great to be able to eat! I have a follow-up with my GI dr in a few weeks. He already called to tell me my biopsy results were "perfect" so hopefully it will be an uneventful visit!

[PinkMartini]

Well it's been 7 months since anyone visited, so I'm not sure how active this thread is, or how many members part of it are still here, but here goes...

Stats:
Name: Summer
Diagnosed with Ulcerative Colitis just this week. Been through a colonoscopy/Hidascan/numerous blood tests and it was the blood test that figured out what I had.
Embarrassing Moments: Awful gas that I have.

Well I just learned I have U.C. this past week. I was under the impression that it was my gallbladder that was the problem so when I got this news, it really shocked me. A life long illness, really? I have to take 3pills/3xday? Huh?

I'm to follow up with my G.I. dr in a few weeks to let him know how the pills are working. I hate this. My DH is saying that we should get a 2nd opinion because my dr could be wrong and then that gives me hope that maybe I won't have to deal with this for the rest of my life, but I have a feeling this is what it is...

For those of you on medicines for U.C. how often do you have flair ups?

[2 Crazy Pugs]

just found this thread.

I have Crohns disease, was diagnosed in 1996, had surgery and had 12 inches of my intestine removed due to a blockage. I have been having flare ups the past couple of weeks, but am afraid to go to the doctor in fear of having to do all the AWFUL tests they have to do. I know I should go, but I can't do it yet!

[myshel]

Might as well add myself to this group.

Stats:
Name: Michelle (myshel)
Diagnosed with: IBS-- I swing between both the D and the C, so I can't really take any meds to help the situation out.
Embarrassing Moments: TMI-- crapping my pants in public... when I have to go, I have to go now!

I found that during both of my pregnancies, my symptoms got much better. I've also learned that stress really does a number on me.

Hopefully, those of that around can share with each other.

[summerbride2005]

I found that with my pregnancy my IBS was almost completely gone. I only had a few stomach issues after the first 3 months. I loved being pregnant since I could actually eat regular food and not have to worry too much about it. I'm hoping that my IBS won't be as bad now that I am 6 weeks pp.

[Peever]

I didn't know this thread existed.

Stats:
Name: Peever
Diagnosed with: IBS. I've been suffering for about 10 yrs now. I was diagnosed about 5 years ago after a colonoscopy and endoscopy.
Embarrassing Moments: Mostly problems with gas.

My IBS completely went away when I was pg with my son, but I still had problems with it with DD for some reason. I was told IBS is often hormonally linked so that makes sense.

I've been on a full blown elimination diet trying to nurse DD (she has multiple food intolerances) and I must say it's been really beneficial for me too. I still seem to have problems with gas if I consume a lot of fiber, but I feel a million times better. I haven't had nearly the gas and bloating that I used to have. I haven't gotten AF back yet either so we'll see what happens after that.

I never had the willpower to do a full elimination diet for myself and I'm still not sure of everything that causes problems for me, but I'd recommend it to anyone who is suffering. I do believe IBS is mostly food related and that it can definitely be controled by diet.

[scout]

Hi--I found this thread doing a search. I'm not sure if I belong here, since my symptoms don't interfere with life too much. I would like to share information, though.

Name: Tracie
Diagnosed with: Pernicious anemia (B12 deficiency--apparently very rare in people under the age of 80...) and Gastritis

I get monthly injections of B12, but recently had a EDG, and got the new diagnosis of gastritis. My recent stomach biopsy was "unremarkable". I guess I'm a little worried about the things I've been reading about my stomach cancer risk now (both gastritis and pernicious anemia increases the risk). I'd like to treat my gastritis naturally, but can't seem to find much info on this. Anyone else with either of these things? My symptoms are fullness after I eat a small meal, a burning or gnawing feel in my stomach and irritation. It's not so bad that I need to take meds, but I don't want it to get worse.

[MichelleRenee]

I am very frustrated with my GI issues right now.

I was on Protonix for about 18 months and it worked great for awhile. A few weeks ago my acid reflux came back very suddenly at full force. I just started a new med today. I am so bummed that the Protonix stopped working.

I am just in a tough spot right now. I am still nursing my daughter so I need to take in enough calories each day to keep up with that. Most of the day I am not hungry at all and then BAM I am starving and jittery and feel like I am going to pass out.

I am trying really hard to eat meals that count since I am not even guaranteed to take in 3 meals a day but I just feel so crappy that eating is difficult. I am nauseous a lot and my stomach always feels like it is full of liquid. No, not just liquid - acid. And the lump in my throat is back. And the heartburn I have been having is just - excruciating. It extends from my stomach all the way up to my throat.

I honestly don't know if the hormones from my pregnancy and nursing are still giving me some of these symptoms. The nausea feels an awful lot like morning sickness.

My GI dr wants me to keep trying these new meds until we find another that works, but my options are a bit limited since I am nursing. Sometimes I feel like he should be doing more. So far my only diagnosis is acid reflux. Is it possible that the reflux is just a symptom of something else?

I'm just really frustrated with feeling so crappy all the time.

[pocahontas]

Might as well add myself to this group.

Stats:
Name: Michelle (myshel)
Diagnosed with: IBS-- I swing between both the D and the C, so I can't really take any meds to help the situation out.


Sorry for my ignorance as I just had my first colonoscopy and Upper Endoscopy ever for a GI dx (although I've had symptoms on and off for 15 years), but what is the difference between IBS-C and D? :confused:

[myshel]

Sorry for my ignorance as I just had my first colonoscopy and Upper Endoscopy ever for a GI dx (although I've had symptoms on and off for 15 years), but what is the difference between IBS-C and D? :confused:

Basically, I'm either constipated or have diarrhea; there really isn't ever an in-between state, which is why I can't medicate. I have found, recently, that regular yogurt has helped balance me out, so to speak.

[DarkHorse]

Have any of you that are suffering from GI issues (ETA: also for those suffering from Crohn's, Ulcerative Colitis, IBD, gallbladder disease and so on) ever been tested for Celiac Disease or looked into food intolerances? Here are some things to consider:

Celiac Disease:
Google this to see all the symptoms that are associated with this disease. I guarantee you will be amazed. It is a horribly underdiagnosed disease that affects a large portion of people all over the world and especially women. Most doctors don't even consider testing for it because they are under the misconception that it is a childhood disease. If you do get tested be aware that there are 5 blood tests called a Celiac Panel that need to be done. Don't let your doctor (like mine) only run two or fewer of the tests. Also, be aware that the blood tests have a relatively high rate of false negatives and they don't account for gluten intolerance/sensitivity that can have the same symptoms.

Food Intolerances:

Gluten
Diary (lactose and/or casein)
MSG
Other (corn, soy, nuts, rice, potatoes, sugar)

Even if you test negative for allergies or celiac disease, food intolerances can have the same symptoms and be just as serious, but not show up on these tests. Again, google these to see the full list of symptoms that go with these intolerances.

It can seem horribly daunting to think of altering your diet, but the benefits are tremendous and can be seen in as little as 10 days. Best of all this is entirely drug free. I have had serious GI and other issues that my doctors couldn't find a cause for and one labeled me as IBS and prescribed pain relievers. Not wanting to be on pain relievers for the rest of my life I did my own research and I have been able to attribute my symptoms to dietary causes and after eliminating gluten and dairy from my diet I am feeling ten times better.

Please, do your own research and try adjusting your diet. You will be amazed at all the options there are for gluten free, dairy free, msg free, corn free, soy free, etc, etc, foods out there. Yes, you will be able to find things to eat and you can still eat out at restaurants. If I sound like an advocate then yes I am because changing my diet allowed me to live normally again WITHOUT the use of drugs. If you would like more information on this I would be more than happy to point you in the right direction or give tips.

I'll step off my soapbox now....