Severe Disgestive Problems

[jlh28]

Sorry this is going to be long, it's a complicated situation.

For the past 4-5 months now, I have been suffering with chronic abdominal pain (usually lower, sometimes mid but never upper), chronic diarrhea (anywhere to 10-15x a day, also keeping me up through the night), occasional eye pain/blurred vision, intermittent fevers (low grade) and horrible joint pain. I started at my family doctor, who ran a CBC and an arthritis panel which came back normal. So he prescribed Lomotil and that kept the diarrhea at bay, but I still had abdominal pain and joint pain, sometimes so bad it would wake me up at night, keep me awake and I wouldn't want to get out of bed because I was in so much pain. I have missed 11 days of school this semester because of it. I have a high pain tolerance and something like this would usually never keep me at home. So he referred me to a gastroenterologist. I met with the gastroenterologist and I felt like he didn't listen to what I had to say except for the fact I had diarrhea. So he ordered a celiac disease panel (came back negative), a barium swallow and a colonoscopy (both came back fine). Both doctors ignored my symptoms of severe joint pain and abdominal pain and told me to take OTC pain meds, which don't touch the pain I'm in. I informed both doctors of this and they basically ignored it and didn't give me any suggestions of anything else I could do.

After colonoscopy, my gastroenterologist took me off Lomotil and had me take Hycosyamine instead which is not working for me at all and I am back to being miserable again. He also ordered a CT scan that I'm having done in the near future as well.

I've had gastrointestinal problems for a few years now, and I had my gallbladder removed when I was 14 because after months of being sick, I finally had the gallbladder function test (I know there's a better name for it) and it turned out my gallbladder was only 2% functioning.

I am on a low dose of Pamelor for anxiety, but it is mild, not anywhere near severe and ever since being on the Pamelor I don't have problems with my anxiety whatsoever. Both doctors have addressed this and each time always ask me about stress in my life. I am 18 years old, a freshman in college, I love it and do very well in school, I'm in a steady healthy relationship, and have wonderful, supportive family and friends. My stress level is very low and I have to retell this to my doctors everytime. The only reason I am beginning to become stressed and very low in spirits is because of what is currently going on with my health.

After a couple months, my family doctor, gastroenterologists and multiple ER doctors began suggesting it was "all in my head" when I was sick from my gallbladder not functioning properly, but I know my body and I knew there was really something wrong. I'm getting the same feeling now. I've been to the ER 4 times in the last 4 months, seen my family doctor multiple times and when all these tests keep coming back negative they are beginning to suggest its "all in my head". But again, I know my body and I know there is something wrong.

I am just getting very frustrated because I feel like my doctors are not listening to me fully, but I know it is hard for them to give me answers or suggest treatments when all these tests and procedures keep coming back normal. I just really need some suggestions of what could be going on or what else I should talk to my doctor about, because this is affecting my everyday life tremendously and it seems like it gradually just keeps getting worse.

[jlh28]

Okay thanks! I'll look into it more and make sure I'm 100% gluten free and make sure my new meds don't have gluten in them either. Thanks for all your help and suggestions.

[meniere135]

And also make sure your medications don't contain gluten.  I went on a gluten free diet for my meniere's disease.  At first the ringing in my ears got worse.  I called about my medications and realized two of them had gluten in them.  I thought I was being silly and anal, but got my meds changed and voila!  the attacks stopped cold turkey in 24 hours after several years of constant attacks.  I haven't had an attack since - and that was 11 years ago. I know gluten might not be your problem, but I just want to emphasize how a little bit can undo the whole diet - so you can chalk this diet up to a "non-help" after following it 100%.  Then you can confidently move on to the next solution.

[jlh28]

Okay thank you! It really means alot to finally get some suggestions since my doctors wont give me any, it actually gives me a sense of hope that I can get this under control.

[meniere135]

Gluten must be excluded 100%.  One tiny cheat can cause consequences for about a week, until it gets out of your system.  You just need to make sure you are 100% gluten free before you can chalk the diet up to "no help at all!"  If that is no help, then maybe go low carb - try Atkins or South Beach...and make sure you take the supplements that they recommend.  But due to your lack of a gallbladder, maybe eat 6 small meals a day to minimize fat content in one sitting, so as not to put too much of a demand on your bile requirement.  I really hope someone can help you.  Those of us who try our best to help people on this site hate to see you leave without an answer.  Keep reposting and maybe someone down the line will have the answer.

Good luck!

[jlh28]

I actually do try excluding gluten as much as I can, I got a list of things from my doctor to avoid and did more research myself. And I don't notice much difference, unfortunately :( I've been doing the gluten-free diet for about 2 months now.

But no they haven't done an ERCP, I will ask my doctors and see if they think that's appropriate.

Thank you both for the suggestions :)

[meniere135]

I've also heard people having trouble after gallbladder surgery and having bile duct trouble.   Even though you tested negative for celiac disease, you can still have gluten intolerance - just not an autoimmune reaction to gluten.  If you're not getting answers from doctors, play around with your diet and see what helps.  Go gluten free first - gluten is a real bugger!  So many people feel much better without it.  You'll need to read up on the diet and take gluten free vitamins (Nature Made brand is one gf vitamin).  Gluten, I've read, can also be associated with inflammation of the gallbladder - so maybe you'll get relief if your bile ducts are causing you problems.

I hope you consider doing the diet.  It's always good to eliminate possible causes of your intestinal problems.  No one should have to live like this.

[Jax555]

Have they done an ERCP?  I know alot of people post gallbladder surgery can suffer from problems with the bile ducts?  Might be worth a try?