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Reply to "Surely just let me die"

I can totally empathise. I've had brilliant health with a j-pouch since 23, and 43 now, so 20 years. Had some troubles on and off, bit of cuffitis here and there, which mainly seemed to be triggered by eating junk processed foods, but would settle naturally in a few days.


Quite recently had some sort of total systemic, intestinal immune breakdown, where everything from top to bottom felt inflamed, sore, bloated, crampy. After treating myself with the usual antibiotics, and not eating for 10 days to give everything a rest, the inflammation seemed to move south, and I was left with cuffitis so bad nothing would pass, water, air, couldn't even get my finger inside the rectal cuff.

Then add in that I seemed to have that passing razor blades, shards of glass feeling from either one hell of a massive ulcer, or a fissure, no joke I was in so much pain and misery I was questioning if I even wanted to carry on with life at all. I'm glad I didn't live in the US and have access to a gun, as it was getting to the point I was 50/50 if I wanted to even live this pain and misery any longer. I was bed bound, and house bound for 9 weeks.

Im not out the woods just yet, but I was desperate enough to think about booking £100 a night hotel so I could sit/lie in unlimited continuous hot water, and simply go to the toilet in the bath water, empty and re-fill, and rinse and repeat for a whole, lovely warm, relaxing night to try and get the cuffitis/fissure to heal. Right now I am on the Prednisone foam, and it has been miraculous.

It's been a real wake up call for me taking things for granted, and stuffing my face with garbage more recently. I genuinely thought I was going to die.

Also after having bleeding anal skin from the 20+ trips to the toilet simply to pass nothing bigger than a teaspoon if that of water/foam, I moved over to flushable, degradable wet wipes, and will never, ever use anything else from now on, they are MIRACULOUS. I only have to look at toilet paper now, even the expensive quilted stuff to cringe and imagine the sand paper feeling on raw, bloodied, itchy skin.

OP we totally understand, I'm glad you have found this community and have somewhere to vent and get support from people who care and have the experience to listen and help.

PS I really want to change my username, but cannot see a way to do it, can anyone advise?

Last edited by rcrossco_1
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