Battling 30+ years without good diagnosis

[tribalrose]

My symptoms started when I was in my teens-abdominal pain and diarrhea which usually coincided with my menstrual cycle. At 17, was diagnosed with duodenal ulcer using upper GI barium swallow. Eventually the ulcer healed but the abdominal pain and diarrhea continued on a regular basis. Had a lower GI series completed but nothing was discovered. In the 80's had surgery to repair rectal wall damage from sexual abuse as child. Fast forward to the 90's (now in my early 30's). Was hospitalized for 3 days for abdominal pain and diarrhea which was attributed to Campylobacter (went to hospital after having an accident from the diarrhea at work). A few years later had a D&C for miscarriage. After my 3rd chilld, had hysterectomy due to endometriosis, prolapsed uterus, bladder and rectum. Eventually weighed in at over 350 lbs. In 2002, lost more than 100 lbs in less than a year--thought it was from working so many hours. Abdominal pain and diarrhea still continued. Had colonoscopy for extreme abdominal pain and diarrhea in early 2003. Polyps were removed and GP diagnosed me with IBS. Abdominal pain and diarrhea continued, add in occasional fecal incontinence now. Three years ago, had gall bladder removed due to gallstones. A month ago was again hospitalized for abdominal pain and diarrhea along with vomiting. CT scan done in the emergency department showed long segment distal ileal - terminal ileal wall thickening with mucosal hyperenhancement and mesenteric stranding. The GI doc suggested doing the pill cam if the colonoscopy showed nothing. Stated he just recently diagnosed several cases of Crohn's disease using this method. Colonscopy performed while in hospital but was normal as both of us suspected it may be. Blood work looked good according to the NP in the GI office who again tried to say it was just IBS and bile-dumping since that is what my record showed. I finally stood my ground instead of just taking whatever diagnosis was easiest and insisted on the GI doc's recommendation of the pill cam. Have follow-up appointment on Wednesday (had the pill cam last week) so hopefully I will finally have a correct diagnosis. Will need to get an xray since I have not seen the pill cam pass (I should have seen it by now, especially since I had several days of explosive diarrhea afterwards).


"What doesn't kill you makes you stronger..."

 

[pampam]

Wow! You poor thing! I feel your frustration. Good for you for standing your ground.

So it sounds like you are on no meds for this problem. Have you tried the SCD? After 2 weeks on this diet I was symptom free. It is no cure, but quite a relief to be able to function again. But there is no cheating on this diet. You must follow it exactly for it to work.

After 30 years, enough is enough. Please keep us posted.

 

[UnXmas]

Did you have your appointment? How did it go?

 

[tribalrose]

Yes...I finally had my appointment. Unfortunately, the pill cam showed nothing according to the NP. She insisted it is Bile Acid Malabsorption and put me on 625 mg Welchol 2 pills twice a day and to titrate the dose down if it works. I have managed to go down to 1 pill twice a day but still need the occasional full dose. At least the diarrhea is under control now (most of the time). I will continue this treatment until another flare up happens and then see what they come up with.

What doesn't kill you makes you stronger!

:shifty:

 

[DJW]

I am so sorry.