Hi folks! Just wondering if anyone can direct me to the right post(s) among the thousands of posts within this forum, or provide me with information here? My daughter had reconstructive surgery (j-pouch) last January. To make an incredibly long nightmare, short, she has basically been house bound and missed a whole year of grade 12 because of it. The situation is that her rectal cuff had left over inflammation to which they attached the pouch and stool made it worse. They put her on infliximab (4x) the regular dose to suppress her immune system from creating inflammation around the area that was damaged. Since then we have had some days where she hardly had to use Imodium and her stool was like soft serve ice cream. BUT, after 9 hospital stays, she wound up with c difficile. Stool "solidified" again, but over the past 2 months she has struggled with watery diarrhea (and the 30x a day/night toileting). We were thrown back on antibiotics in case it was c.diff, but tests came back negative, so we went off the antibiotics.... but being on the antibiotics (vancomycin) for four days kinda helped the diarrhea become more like pureed baby food texture. We have purchased the Metamucil Fibre Thin cookies (which she has omly eaten 2 of) because Benefibre never seemed to work for us (thanks for that info Scott F). Additionally, she experiences abdominal pain (which 7 different drugs she tried, never helped relieve the pain) and then it is followed by incredibly loud abdominal growling (motility noises?) that relieve the pain. She often experiences loss of appetite. She is 96lbs right now. During recovery,she was put on a feeding tube for 5 months, which caused her MORE diarrhea, because the inflammation seemed to make her lose her appetite... and fighting constant dehydration also seemed to cause her more diarrhea. When she was IV "over" hydrated, many problems semd to subside. We haven't been hospitalized in 4 months,and the fall 2019, aside from c difficile twice, was wonderful- we were all happy again and beginning to get back to living life. But January and February have been awful again, and no one can figure out why.
I would love to know everyone's experiences.... so I can see what we might be missing?