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Going to the city. Packing a bag in case. So sick, can't eat, want to throw up, system shutting down. This happened 5 years ago with Pouchitis. Today is day 4. 

I hope that's all it is. Maybe this time they will put me out of my misery but I doubt it. Probably more tests. I'm scared. What if they do an Ileo and I'm still sick. And what more can they do for my pouch? I've tried everything. 5 years ago Remi got me out but I am not a candidate for bios because of skin cancer and because I got serum sickness from the Remi. 

Why do I get so sick? 

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It is incredible how bad pouchitis can make you feel. I was having serious abdominal pain, upper abdominal cramps and gas, obstructive symptoms, you name it. I thought for sure I had a hot gallbladder or pancreas. Nope, "just" pouchitis. I was lucky that antibiotics helped.


Hope you get this sorted out soon.



Oh my yes, this is exactly what's going on and you can add nauseau, dry heaves, serious burping and gas, can't eat. That's what got me admitted. I felt like I had a bad flu. Going on for 4 days. Being treated as pouchitis. My doctor gave the team a long list of tests, oh fun, not sure yet about the plan. The Iv fluid got my pouch to open up, it was barely working, I hoped I would feel better but still feeling sick this am. This happened 5 years ago As well. 

Your are the first for me to hear that you experienced something similar. Other pouchitis posts don't mention these things. 

Yeah, I was pretty surprised to find that "simple" pouchitis could cause symptoms so remote from the organ itself. I was burping like crazy and felt like my stomach was in knots. But all my liver labs were good, blood counts too. Scope showed seriously bad pouchitis. Higher dose Flagyl set me straight. Since then though, the pouchitis is more chronic/recurring. So, I am doing the dance with rotating antibiotics and trying to have antibiotic free time as long as possible between courses.



I have nausea daily and take zolfran (?) for it.  I also have nasty gas and fevers.  I don't know what is causing the fevers as my thyroid is out of control and it could be a symptom of that.  I've tried to figure out what to eat to control the gas......doesn't matter what so I eat my personal pouch friendly diet.


A hospital is the best place to be if having a battery of tests.  You don't have to get yourself ready and drive to a different location and then wait a week to hear about the results.  I hope they are figuring something out.



I read somewhere that the operation to remove pouches is worse than when they removed our diseased nasty colons.  As memory serves I think a big concern is with the arteries supplying blood to the intestines.  Is that right Jan?  I think we only have one vs two now.  You might want to ask them about that.  It is your body and if you want to go back to a stoma it is your decision.  Is it easier to go back to a stoma and let the pouch rest before making the decision to remove the pouch?  We are not getting any younger.


Just because the fellow doesn't understand why you are having such hard time doesn't mean you are therefore better.  If he trying to convince you that you aren't sick is crazy. It's like he is calling you a liar! Can you by-pass him and talk to the real surgeon?  I hope the tests you are undergoing reveal something that can be done to help you.  You have to be able to eat to live!  Good Luck


Last edited by TE Marie

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