Diagnosed with Ulcerative Colitis in 2011, no issues whatsoever for 3 years. End of 2014 to 2016 Flair ups. Multiple drugs, helped at first and then stopped working. Was tired of living like this and a decision to have Colon removed in June and J pouch made, J pouch attached in August. All happened in 2016. I have a clear leakage come from my bottom. My underwear is wet and I'm not sure what it is. My stools are formed. My stools were so formed that I had to have the Ileostomy removed because no matter what I ate it would not be able to pass. It was not a blockage. Same symptoms, but when they looked at it from a CT Scan, everything was normal. They look like regular stool, but smaller pieces. They sometimes are all red sometimes not, I guess thats blood. I have stomach cramps and pain, as well as nausea. My joints ache and I just feel very bad. My stools were so formed that I had to have the Ileostomy removed because no matter what I ate it would not be able to pass. It was not a blockage. Same symptoms now but to a much lesser degree thankfully. When they looked at it from a CT Scan, everything was normal. I have gas and it pushes my stool inside my intestines. I can feel "pops" as some air just passed stool in my intestines. I'm not talking about being on the toilet and doing my business. This happens while just sitting down and hearing and feeling my intestines do this. I went in for a Barium Swallow and they said everything was okay. I feel horrible and I wish I just stayed with my Colon. I thought this would be a solution, but it comes with more problems than Ulcerative Colitis. More severe ones too. Colitis was bad but I could deal with it, Ileostomy was absolutely horrible, and J-Pouch is bad. I don't know what to do anymore. Every doctor says I'm okay and nothings wrong, but I feel bad. I'm under 21 and I can't live life. I thought this was a cure, but its a curse. I need help. What's wrong with my J-Pouch? What can I do?
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There are some things you can try that may help. You might not be drinking enough water. Try increasing it until you're peeing light colored urine at least a few times daily. You might also try psyllium (e.g. Metamucil) a couple of times per day to see if it normalizes your stools. We're generally better off with soft stools.
What hospital are you being seen at? The doctors literally don't have a next step?
Hello, SHTF.
I'm glad you found this group and I hope you find answers to your concerns. Your pouch is very new, four months old. The good thing to remember is your doctors have not found anything wrong with your pouch formation or function, so try not to worry about anything inside. Worrying will use up all your energy and you need your energy now to recover and your tissue need to heal. Try not to become stressed; guts do not like stress and goes into the fight or flight mode, churning with adrenaline. You know what I mean. It's like carrying a bowling ball in your stomach 24/7. You've just come through a major surgery and your body needs time to adjust to the loss of your colon. My reversal was in April and I truly did not think I would be able to leave the house again. I had no ongoing UC symptoms before my surgery. So when I had to have the big surgery and j pouch it was a life changer. I couldn't walk upright; I was hunched over like I was 120 years old. I couldn't catch my breath, I had severe leakage all the time and sometimes couldn't leave the house. The frequency, burning, raw skin, blood, fissures, gas cramps and pouchitis started in my 2nd week. Each week brought a new problem. To go from no UC symptoms to this was very upsetting. As long as you are not leaking blood, try not to worry about leakage. Keep a supply of liners for your underwear. Extra laundry will be a fact of life for the next few months. You might have leakage for a while. Even now, I have a tiny bit of leakage if my pouch is full. That's a sign. Could that be your issue too?
Four or five months after reversal, slowly but surely things started to get better, one week at a time. It was as though my pouch started to mature and my body adjusted. Now I can be out of the house for six hours and not need a restroom, and no leaks. Try to focus on healing and rest, eating small nutritious meals, going outside for walks or exercise, weather permitting. All these things are the positive things you can do for yourself and you can have control over. Try not to feel regret over your surgery. You did what you needed to do. There is no turning back so try not to wish for that. Turn your attention to helping your brand new pouch adjust. Remember, it was living as a small intestine and suddenly it gets pulled down, folded over, sewn shut, hollowed out, and attached to your bottom, and it has to be a colon / j pouch. It's in shock. It's trying to adjust too. Be patient with it, and with yourself. Be good to yourself, don't regret; regret steals your energy. Try to spend that strong energy in a different way: walk, read, cook big batches of meals and freeze them, rest, meditate, whatever it takes to help yourself heal mentally and physically. It got much better for me and I hope the same for you, SHTF. Best wishes to you.
winterberry you are sooo right
Great post winterberry, very inspiring...