Mild Crohn's?

[kayaker4157]

Hi everyone,
About a month ago, after 8 long months of no answers, my GI finally said that I most likely have Crohn's. She said it appears to be a "mild" case, but that really didn't help any of the millions of questions, emotions and fears that ran through my head on that long drive back home. After a couple months of entocort, the pain definitely seems improved, so she's weening me off it.

My question is, I'm not quite understanding why there are still some days where the pain comes back and I have no idea why, and other days it seems to be completely gone. Couple other added twists. I've been keeping a food diary, and I've been eating a very bland, soft-foods diet for the past couple weeks, but nothing seems to correlate as to what days I have the pain and what days I don't. BM have also been as unpredictable as the pain (either D one day or constipated for days), and that also don't seem to be related to the increased pain either. Any thoughts or suggestions? Thank you -Anne

 

[David in Seattle]

Your case sounds much like my own. I never had any gut issues until some 15 months ago, when out of the blue, I began having pain & going from one normally formed BM/day to sometimes 2 or 3 normally formed movements. I too will go for a day or 2 with very minimal discomfort, although I am at this point on a very, very rigid diet, only to have the symptoms reappear for no apparent reason, at least not diet-based. Had a ton of tests, none showed anything except very mild steatorhea and some small bowel lesions on a capsule endoscopy. Colonoscopy was "normal", as was upper endoscopy w/biopsy. Basically, I get pain around navel about 2.5 hours after eating, on and off lower right quadrant pain, and a feeling of incomplete defecation in the lower bowel/rectal area after a bowel movement. Like the sensation you may have after a laxative induced movement, where "it's not over yet", but nothing more is forthcoming. I have none of the usual Crohn's symptoms; no diarrhea, no fever, never passed blood/mucus/pus. No 2ndary symptoms, involving the eyes, or arthritis, or anal fissures, or any of the characteristic skin manifestations. No abnormal blood work to indicate anemia, or elevated C reactive protein to indicate inflammation. PLUS, at my age, I'm pretty much smack-dab in the middle of the non-Crohn's period (there are 2 periods it tends to arise, 15 to 30, where the majority of cases begin, and 60 to 80, a much lower incidence). And yet, my most recent GI doc (my 3rd) has said "probably MILD Crohn's". The more I read, the more convinced I become that it is not IBD. So I'm on here and elsewhere doing my own research because in my experience with this & 30 years of "fibromyalgia", one thing has become clear to me regarding the medical profession; those who make it up are basically disinclined to do any more work than is necessary, and they don't like ambiguity. In other words, they're just like the rest of humanity. They like things to be neat and tidy, and to fit into the handful of preconceived scenarios they encounter in 90% of their profession encounters, day in and day out. So if you don't think you have IBD, you very well may not. Get a 2nd opinion. And a 3rd. Look into other possibilities on your own, like Celiac disease. One thing I've learned in the months I've been prowling internet forums full of gut sufferers is that it is not at all unusual to go a decade before getting the right answer, which is unfortunate indeed.

 

[Crohn's 35]

Hi Anne, love your puppy.. although you are changing your diet, it isn't a guarantee that it will settle anyone's Crohns. Flaring can be from a number of things. Diet does help, but even mild cases are going to have flares from time to time. Supplements or meds help keep it under control, it is a very undpredictable disease, and stress is a creeper too. I am sorry you are having a bit of a rough time with it. Hang in there. Keep your blood work up and regular visits to your Gi.

 

[Lydia]

Yep, its multi-factoral. Diet, supplements, and medication can all be used to help keep in under control. Take good care of yourself, it makes a difference. Mine is in my decending colon so I had a really hard time figuring out which foods affected me because it can take a day or so before the food I eat actually reaches the affected area. I found that trials of cutting a suspect food group for a couple weeks and then adding back in was better at figuring out if food affects me. Like since I cut wheat I have found I have way way way less bloating and gas and if I do eat wheat I bloat right up.