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Colonoscopy nightmare

Hi my name is Sandra, I was diagnosed with CC in 2004 after a year of watery diarrhea, in excess of 30 times daily. The only treatment offered at that time was the Pepto trial. I tried it, made me vomit and did not work. Went into remission for several years. Severe flare up in 2013, had workup and colonoscopy with local GI doc (not the one who originally diagnosed me). Whole procedure was a nightmare from the start. Doc was 2 1/2 hours behind, in a pissed off mood when he came in and introduced himself to me. The sedative did not work, the procedure hurt like crazy(and I told him, he brushed me off). Finally done I went home and had quite a bit of discomfort, 2 days later having emergency surgery due to a perforated colon. 4 surgeries and severe complications later I finally feel about 80 percent ok. However still having pretty serious diarrhea several times per day, but at least I am able to work. During routine blood work I am found to have a hemoglobin of 8, my PCP thinks I may have a GI bleed, I go back to my original GI doc, he recommends upper and lower scoping. Where my small bowel was reattached to my large bowel during my emergency surgery a small ulcer is found. GI doc puts me on Entocort and Iron. I felt great for 2 weeks. Than I started to feel like grim death. GI doc can't figure out why, since my hemoglobin is improving I should not feel so badly, I cannot even work, I have extreme fatigue and weakness, nausea to the point of vomiting. I am urinating every 20 minutes, day and night. I finally research side effects of Entocort, and bam every symptom I have is a side effect. I decide to get off the drug. After a couple days I feel markedly better, I am taking one every other day to avoid any withdrawal symptoms. I still get wiped out after several hours but I feel like a human again. I apologize for such a long introduction. I still have a few BM's daily, and am still taking Iron. I truly feel the Entocort was not right for me. :)
 
Does your Gi know you took yourself off meds?
You need some sorta med to keep things under control to avoid future surgeries or worse .
 
I see my GI doc next Monday, he said he could not figure out why I was feeling so poorly. I was unable to work, and without work my bills do not get paid. I will discuss with him when I see him. I feel so much better since I started taper. I agree with you that I need some medication, but Entocort was not it. I do have Lomotil for when the diarrhea gets really bad. Thanks for your reply.
 
Hi Sandra! Welcome to the forum!

Sorry to hear of your horrible colonoscopy experience and the subsequent surgeries. Glad that you started to feel reasonably well again after all that :ghug:

With ulcerations seen on the scope and your low hemoglobin, it does sound like you would benefit from a maintenance med to get you into deeper remission and hopefully prevent the need for further surgery.

Sometimes a med isn't right for us as individuals but luckily there are lots of choices besides Entocort - and better choices longterm too. Hope you can find one that's right for you - perhaps an immunomodulator (azathioprine, 6mp or methotrexate) or a biologic (like Remicade or Humira)

Best of luck!
 
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