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Reply to "Do you typically see blood with pouchitis"

Sorry for long post - I can't believe that this is more than a month ago and it is still not figured out. I am so stumped on this. They set her up for a scope finally but gave me a date of June 23rd initially.  Since last month, she has started taking antibiotic Cipro.  Initially, with the first round of 10 day antibiotics she started to feel better on day 7 where the blood and  stomach aches went away. Her doctor did not tell me to continue so she didn't. 3 days later she started with the stomach aches and seeing bloody mucous about once a day with her bowel movements.  Spoke to her GI and was told that some patients need to be on antibiotics for longer. It was at this point that her GI finally suggested getting on the schedule for scope and also running a fecal calprotectin test.  So back on Cipro she went and had her stool test to the lab. I was very surprised to see that her calpro test came back at 39, a very low level of inflammation. Her previous level was at 99 about 3 months prior.  At the time of the test, I suspected it as being low since she already completed the first round of antibiotics.  This level really confused me if pouchitis is indeed what she has. I don't think that is what it is as she has not experienced any urgency, diarrhea, incontinence or any of the typical pouchitis symptoms other that the bloody mucous with bowel movements.  I started her on 2nd round of Cipro and still kept on pushing for scope to be moved up. I hoped she would experience some relief like she did the first time.  This time around 8th day she stopped seeing blood but her stomach aches never stopped. What also started happening is a slowdown in the number of bowel movements she was having.  She felt like she had to go but nothing would come out. Her typical # is 6-9 and she went down to like 4. She still had appetite and able to eat. By the time she finished this course of 10 day Cipro she was going less and less. Even the quantity of her bowel movements got less.  I wanted to have her seen by GI but she was not in so we went to Emergency Department to have her evaluated.  I was worried about the j-pouch being at max capacity.  Still concerned for reoccurring stricture at anastomosis. Her blood work looked good as far as hemoglobin and inflammation markers. The surgical doctor was able to assess that she did not have a stricture at the rectal cuff. The abdominal x-ray showed her pouch was full of stool and they discharged her with a constipated diagnosis. Her scope was moved up to 5/19- next week. But she is still experiencing the constant stomach aches up high in center of stomach area above belly button. Although she had a few days with no blood at the end of Cipro 2nd round, it started up again. She went 1.5 days without Cipro between round 2 and round 3. The blood seems to be increasing. She is seeing it on more occasions and much of her time spent on bathroom is unproductive. I have been giving her 2 capfuls of miralax when she gets home from school and that has been helping her go. I have been making her juices to relieve constipation and food higher in soluble fiber to help too but I think the miralax is largely responsible for some type of relief.  This scope can't come soon enough!

I will add that she has a hernia repair done at the stoma site this past october. It was an open surgery since plastic surgery was done at same time to improve the scar she had. Surgical mesh was used at the repair site.

Totally stumped here- I just keep reading articles and other posts and calling her doctors on a daily basis trying to find the answer. Wondering what other longtime j-pouchers think.

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