My 11 year old daughter is over 9 months out from surgery (complete colectomy) and 8 months after the reconnect. The surgeon and the GI doc are stumped as why she is still having 15+ bowel movements a day. She gets very little sleep, bottom is raw, and is now about 20 pounds underweight with very little energy. We have basically cut out all sugary anything. That seemed to help a bit, but we cannot pin point any food that could be the problem. GI doc thought is was some kind of pouchitis, but not the case. She's been taking the immodium, lomotil, metamucil, and florastor. I am at my wits end! Any thoughts or similar stories? I am becoming desperate for some answers.
Reply posted for SueBTru.
Thanks for your kind thoughts and words ,Sue. It does help to know there are others going through similar things!
Reply posted for LaurenC13183.
Thanks Lauren! I just need to hear these things because I start to doubt if we made the right decision for our daughter.
Reply posted for Magpie.
For several years after surgery I had as many as 10-15 bowel movements every day. My doctor said that it would take time for my body to learn to digest food properly with a short intestinal tract. Also, without my illeum, food was flying through me. It is now 9 years since my surgery and though I still have intestinal issues, I am as close to normal as I've been since my diagnosis.
Reply posted for Magpie.
I'm so sorry to hear that your daughter is having trouble. I'm about 4 1/2 months post-reconnect and frequently have trouble but find that the Imodium helps, as well as Alleve (naproxen) to relieve the pain from a sore bottom. My doc also focused on food to help, and I've found that my days go better with a banana and peanut butter for breakfast and plenty of rice, pasta, white crackers, etc to help thicken things up. I've been known to have rice for dinner and rice pudding for a little sweet dessert in an attempt to keep things together to sleep longer when things are particularly bad. (I've never heard about your sugar reference. I may need to investigate that a bit.) Please let her know that she's not alone out there.
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