Chron's Diagnosis & IBS

I was having pain in my lower right side as well in 2000. The pain was horrible, would make me double over, I also was constipated daily.

I can tell you this, After tests it was discovered to be IBS or spastic colon, I have been on BENTYL ever since, to stop the spasms, 2 yrs ago had pain on left side, so bad I drove stright to the ER. Found out I also have diverticulitis now. What helps tremendously is getting your fiber. I take a tablespoon of metamucil every day. And eat to add fiber, no greasy , processed fast food!!!!
I hope this helps. anyone who is constipated needs to add fiber to their diet, its not a laxative and the bloating, pain, cramps, constipation are now gone. Good luck to you!!

Hi Mindy. There are people on this forum who have IBS complaints as well as a Crohn's diagnosis. And there are lots like you (me included!) who tend more toward "constipation" than diarrhea. You are not alone!

I totally agree, menstrual cycles make all of this much worse. Even women without bowel diseases get cramps and diarrhea around their periods. I have absolutely linked the cycles of my belly aches to the hormonal cycles - and now that I'm close to menopause, it has been a huge break that I don't menstruate every month (for the last 5 years I menstruated every 2-3 weeks, can you imagine!).

Even tho the biopsies in your colonoscopy didn't come back with a firm Crohn's finding, I would disagree with your statement that "there is no sign of Crohn's." An ulcer in the cecum sounds like an inflammatory bowel problem and it is not normal. How long have you been taking prednisone? Did you feel that the Humira was helping for a while and is not helping anymore? What other meds have you tried?

My Crohn's diagnosis has never been clear. My disease is not particularly serious - I haven't lost much more than 10 lb at any one time - and except for anemia and joint pain I'd probably never go to the GI. I started out with a proctitis diagnosis, which was definitive. From there my GI found inflammation in the cecum in my 2nd scope (2 years after the first), then an esophageal stricture and gastritis.... Medically I have responded much better to Pentasa than Asacol, backing up my feeling that my inflammation includes the small bowel. I've had 3 GIs in 10 years; all have said "IBD" without specifying. But no one disagrees with me when I say "Crohn's."

The low residue diet you're eating shouldn't be harmful to you. You might find that teas can bother your belly - when my gastritis is bad I cannot drink tea without adding cream to balance the acid. I choose to avoid lactose in milk and soft cheese, but I find yogurt very helpful (probiotics are universally revered around here) and healthy. For more info on "IBS" diets, google FODMAP and prepare to be astounded by these recent developments.

I think keeping a food diary might be something to try. I got my first diagnosis just a year before you, but since then I've stopped eating beans unless I prepare them myself, avoid lactose (see above) and generally avoid restaurant food because it is just too rich for me. Otherwise I eat what I want (although recently I've tried to limit gluten on days when I'm really feeling awful, and that seems to help, maybe). I love red wine but it often hurts to drink, and the same with dark chocolate.

My first GI started with an IBS diagnosis and had me take fiber. Wow, that was awful and I will never supplement with fiber again. I do eat whole grain bread, but frankly not that much of it. Raw vegetables don't bother me, but I've noticed I eat fewer salads these days than I used to. I've gotten to the point of zero iron stores and had to take iron orally, and that was also awful, so I am trying to keep up with eating red meat and dark leafy greens. My last cbc had my hemoglobin at 11, so I'm probably going to have to take iron again [shudder].

I hope this is helpful. What is your GI's plan for tapering the prednisone? What of the other drugs that you listed worked? It's good to hear that you're being treated at Mayo but confusing that the nurse there would tell you ulcers are "really nothing." Maybe she was giving you a relative sense of things - my GI says I'm "not sick enough" for biologics, while my rheumatologist pushes me to deal with my joint pain more aggressively. All Doctors have their own sense of what's urgent and what's not. A GI who sees a lot of IBD patients wasting away and bleeding, fistulas, etc., has got to have a different world view than mine, for sure.

thank you all for the responses! i have taken hyomax and it makes me way too out of it--even blurring my vision...
tewcute--what do you take for your crohns?