Severe diarrhea but not Crohn's

[cdoc79]

Hello everyone, I certainly feel your pain and frustrations. I was diagnosed with Crohn's in 2003, battled severe abdominal pain (but never diarrhea) for a few years before finally having an ileocecal resection done in 2008. Ever since surgery, I've had severe diarrhea. I know diarrhea is common for a period of time after resection but it has continued. My doctor has had me try numerous rounds of Cholestyramine which hasn't helped. I have also tried Welchol, Entocort, Prednisone and numerous others including 4 Lomotil/3 times/day (prescription strength anti-diarrheal) which hasn't even touched it. I have had numerous colonoscopies, MR enterographies, endoscopies, stool and blood tests, etc., all of which have showed that my Crohn's has been under good control ever since surgery. The diarrhea has been so bad for so long that I recently developed a perianal fistula and abscess that I had to have surgery on. None of my GI doctors can figure out what is going on since my testing for Crohn's is all negative as well as all other testing - infections, Celiac, food allergies/intolerances, etc. I'm currently back at the Mayo Clinic for another round of testing.

Has anyone had similar symptoms or heard of someone else that has knowing that all Crohn's and other testing has been negative? Thank you for your help, I'm desperate! Hope the rest of you all find answers soon also!

Current Meds: Humira 40mg injection every 2 weeks

 

[lookame]

This is a tough one. You have crohns but it's under control...you may have IBS on top of it? Have you tried to cut down on certain things you eat? Have you tried a small dose of antidiarreahal? I'm not sure what could be going on

 

[DustyKat]

Hi cdoc and :welcome:

My daughter has short bowel syndrome following a Right Hemicolectomy in 2006. She has been in remission for 5 years but has been left with an inability to reabsorb bile salts, hence the chronic and frequent diarrhoea.

She did try Questran, cholestryramine, it did work for her however the side effects weren't worth it, she experienced pain, bloating and cramping. The oral meds, like Imodium and Lomotil, and commercial preparations of psyllium also caused the same problems.

She eventually tried natural psyllium husks and in her case they have worked. She has also gone to a vegan diet coupled with very little processed food. I think it is a combination of these things that now only has her using her bowels once a day. She has made many dietary sacrifices but she says it is worth it. The one thing she finds particularly notorious for causing the diarrhoea to return with a vengeance is oil, whether it be salad type oil or food cooked with oil or in oil.

I hope you can find relief and very soon. I watched my daughter plan her eating around her day for 4 years and it was not a solution in any way, shape or form.

My son has also recently had the same surgery and although his diarrhoea isn't as bad as Sarah's was he has now started using psyllium as well. He indicated to me yesterday that it was working. He does not restrict his diet so is using it about three times a day.

Good luck and welcome aboard!

Dusty. xxx

 

[cdoc79]

Thank you Dusty, I'll give it a try!