I'm new to the group and hoping someone has some advice. My son had a total colectomy with j pouch surgery two years ago. At the beginning of this year he had adhesions at his ostomy take down site and had to have surgery to remove it. He has been suffering for the past 6 months with severe lower abdominal cramps and straight liquid stool. He says if feels like he has to go all the time but he will go to the bathroom and nothing. He has had so many tests! They can't find any strictures, he has been on Cipro and Flagyl with no help. They don't think it is Crohns because it didn't respond to medication for that. He has had multiple scopes and the only thing they can find is inflammation around the clips in his pouch but they don't think that is causing his problems. The doctors can't figure out what is causing the issue and meanwhile he is having to do on line classes because he had missed so much school. I just want him to feel better so he can at least go to school and enjoy high school. Does anyone have any advice? I'm open to just about anything these days.
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Has he been tested for C diff? That sometimes gets skipped, and he sounds like he could have it. There are multiple tests - the PCR test is the most reliable one commonly used. The test is most sensitive if he hasn't been on antibiotics for a couple of weeks.
Was his adhesion surgery about a year ago? I assume he was getting obstructions. Did he feel well for 6 months after that? Has he ever done well with his pouch? If I've mangled the timeline, my apologies.
Thank you so much for your response. He has been tested for c-diff and doesn't have it. He has had it in the past though. His adhesion surgery was almost exactly a year ago and after that he felt great for a while and then all this cramping and the constant need to go started. The cramping seems to me like a narrowing of his small intestine but the doctors say no. The constant feeling of needing to go along with the cramps is keeping him up and just making him miserable. He has a endoscopy and flexible sig tomorrow but I don't know what they will see this time that they haven't seen before. Sorry to sound grumpy. I'm just so frustrated for him.
This may not be helpful......maybe try a new doctor. Like my brother said....some doctors graduate at the top of the list some at the bottom. My doctor is in Seattle. Dr. Steve Medwell....he is tops in the field....I pray for answers and relief.....
You don't sound grumpy! It IS so frustrating when you keep dealing with symptoms and no answers are forthcoming. Very hard to watch your loved one suffer. If you keep getting the "he's fine" answer - and he clearly is not improving - perhaps (I know it's awful to go through the process) change doctors - is he going to GI person or his surgeon. I've found GI (medical) people much more helpful in dealing with issues through the years with my pouch. If it gets truly awful, I vote for the Cleveland Clinic, which saved my sister's life when no one could figure out how to help her. She wishes she had gone sooner and they fixed her up quite quickly. The money spent, flying, etc. was worth it to get her health back. Good luck and you do not sound grumpy - if we cannot vent on here and get some support - then really, what is the point? 
You just sound like a Mom who is needing support and help and who cares for her child. You sound human Please let us know how he does and don't fear being judged for feeling frustrated!
As a Dad my heart goes out to you, it's very difficult watching your kids suffer and not being able to help. My very active and able son lost his ability to walk last year at 12 years old and the Neurologists dismissed it as being all fabricated in his head....ended up his brain was putting pressure on the spine disrupting the flow of spinal fluid. Doctors will be Doctors, but the ones that are good are life savers and change the whole experience. If you're not getting that then keep pushing, of course these things can be difficult to diagnose for even the best of doctors.
This might not help but I've dealt with similar symptoms for the past couple of years and it's difficult not knowing what to do. A couple of questions.
Does his cramping come and go? Does it start after eating a meal? Is there relief after a BM? Is it worse after eating certain foods? Is he eating small frequent meals or fewer larger meals?
I'm sure like everyone else in our position you're used to watching his diet carefully but sometimes I find I overlook the simplest things. I drive my wife nuts questioning everything I eat/do.
I've been down to a very bland minimal diet for a long time but when I go on a liquid diet the cramping eases if not goes away. I'm now in the process of slowly introducing soft low fiber foods into my diet. What I've noticed is when I try something and I immediately get cramps I have the same problem with urgency and it feels like everything's swelled up and feels like I always have to use bathroom but there's very little stool. Now what I do is I look at my diet log for the last meal that I ate and if I tried something new I stop that item for the time, if not I back up to softer foods or liquid. It seems like after what is irritating my gut is emptied then my cramps get better and my BM's get a LOT easier. Very slow going process and I still don't have any answers but I feel I can control the symptoms better and get my gut to start healing. Not to mention all the straining gave me the gift of a fissure and that's no fun either, but when I'm not straining that pain eases somewhat.
Hope he finds relief.