I have a 11 year old daughter with a j-pouch and PSC. She has been having horrible pains off and on since about 2 months after her take down, last march. At first they were very infrequent, but now happening at least 3-4 days a week. We have talked to both her surgeon and Gi and they are not quite sure what is causing it. They think either adhesions or backed up gas, caused possibly by her pouchitis. They are both amazing doctors and have no complaints about them! The surgeon has even said if they get worse he would go in and look and remove adhesions if necessary. We really would like to avoid this.
She has also basically been on antibiotics since end of May. She has been scoped twice and each time shows a mild case of pouchitis. Whenever we get off antibiotics, loose stool and blood. She can't take VSL, due to severe food allergies. She also has had an MRE and it showed nothing abnormal in sm intestine.
Part of the problem, yet blessing, is the pain often only last about 30 mins to an hour then is gone, although it sometimes comes back later that same day. We live about 65 miles away from our doctors, so can't actually make it to the er for a X-ray when this is going on. This is why it is so hard for the doctors to pinpoint what it is. She is fine and feels great when we see them.
The pain is always in the same spot on her left side, in between her scope scars. Heat and gentle rubbing usual helps it feel better, but the pain can get so sever! She is a kid with a high pain threshold, so when it's at a 9 and she's crying I feel so helpless! The frustrating part for her is they occur at any time. They interrupt her at school and will get so severe she has to leave class, or miss out on fun activities. Just wondering if anyone else has ever experienced this and what your thoughts are. We have kept a food journal and there does not seem to be a correlation with anything or when she eats. Any help or suggestions would be greatly appreciated!