I know it's pretty late but can anybody please respond or give me any advice now!! I havery a j pouch for 6 months now and it's been tough getting things back to some forms of normal and still I havent..been having constant pain, incontinence, straining to empty, blood from butt, fissures, severe burning and all the other symptoms that come along with it!! But as of right now I'm in so much pain I'm crying!! I've been to the toilet about 5 times in 20 minutes..it hurts so bad to poop it even hurts to pass gas the burn is unbearable and all I can do is lay here in my bed and pray it goes away while crying..it has never been this bad or intense!! Please help!!
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I too am having a lot of the problems you are having. I am having severe pain in my abdomen and back with. I also have trouble with straining to go and fissures. I also am having horrible butt burn and it hurts to pass gas or poop. You could try ilex or something with lidocaine in it. With ilex, it will get on your clothes though. There are a lot of creams you could try though. I dont remember the names though. The other members can tell you the names. Sorry I'm really forgetful. For fissures, I was prescribed lidocaine jelly by my surgeon. Maybe you could try that, it might help with the fissures for you. Is it possible you might have pouchitis? I think you are having symptoms of pouchitis. I haven't had it yet though. I have spasms in my spincter after I poop too. Have you called you doctor about it? I'm sorry I can't be of much help because I'm only 3 months post take down. I'm still figuring things out myself. Or maybe it might be good to go to the er.
The ointments that help with the spasming, straining, fissures, and pain are nifedipine/lidocaine and diltiazem. Thy are compounded medications and prescription only but some hospitals make them in bulk. I get mine at UNC for $60 but I was quoted $120 at a compounding pharmacy. Thy last a long time though.
Hello, Britbrat88.
Your pain sounds bad. For the pain of your fissures and burning, have you tried a sitz bath yet? I got mine from Amazon, and they are also available at health care stores or pharmacies. Fill it with very warm water (nothing else, not Epsom or any oils) set it on the toilet and lower yourself into it. Soak until the water cools, and refill. It will bring blood to the area internally and help your fissures heal, and it is very soothing to the burning skin. Also, a portable bidet bottle to use and carry with you when out or at work will definitely keep that area free of residue that creates burn and raw skin. Do you use a barrier cream after each BM?
Are you on a bland diet to try and give your insides a rest? No fiber or roughage, no spices, veg skins, carbonated drinks? For weeks after my takedown I could only eat bland foods like eggs, tofu, steamed fish. No fruit or veg, no fiber cereals, not even oatmeal. Just plain, so that the output didn't irritate and burn like fire. What does your diet consist of? What does your surgeon or doctor say?
Andantol gel (isothipendyl) or similar in the US. Works like a charm. Put a small amount on your finger and spread around the perianal area. It has an inmediate effect against the intense and sharp butt burn and uncontrollable itching.
For spams and and internal pains in your coccyx/tailbone get a prescripcion of Tylex CD (a cousin of morphine) or Arcoxia. They are strong medicines that will make you feel better in each painful episode.
Also, try getting a hoose bidet attached to your toilet! Do not wipe, remove the poop out of your butt with water and avoid the intense wiping! Home Depot is the place for getting that and you can call a plumber to install it in less than 10 minuets.
And take the sitz baths with super hot water and stay there 20 min.