Hello all,
Anyone over the 40yr mark with their J-pouch? How are you getting along?
I had a good run for about 30yrs then the pouchitis & inflammation kicked in. Finally found a biologic that worked pretty well but affected my liver. I will no longer be taking any biologic.
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Thank you for this post.
I am 21 years in, and was absolutely bottom baseline miserable as Ive had a repeated blow of ulceration in my pouch after many years of reasonable health. The consultant was a bit of a prick, and told me that 20 years for a j-pouch is about what they see in terms of lifespan, implying almost that I should be grateful to have had this time with it so far.
I always said I would die before going back to a bag, and that I would die with my j-pouch come hell or high water, and this gives me some hope that is IS possible to get back on track and wring a few more years out of it.
Thank you CrockPot, this has really helped my day after an absolutely miserable time at work for the last 6 months.
I've had my pouch for 31 years. It still causes me a certain level of inconvenience, but way better than before surgery.
did you just tell the Doctor, you don't want to take the biologic anymore?
When did you stop the biologic?
43 years is awesome and very encouraging! I am at the 32 year mark and hope to have mine for a long time to come. I had a really good run for 29 years and have battled some issues in recent years (SIBO and strictures) but hope the issues stay manageable.
It’s great to hear from long-term pouchers!
And how everyone is managing.
Hi J-Pouch members
So grateful to have my pouch since surgery 1998, I am now 76 years old and will explore biologic drug Stelera soon due to the acute inflammation in pouch. hope is all we have to go until all matters change. thanks everyone for your positive pouch long life feedback, means so much.
Sheila
Hello j-pouch veterans,
I'm on year 31 and started Humira injections two years ago to reduce the inflammation in the pouch. It is going well. My primary frustration is the need to use the bathroom a few times throughout the night.
I still think it is a better quality of life over an ileostomy.
So glad to hear of others' experiences. My pouch life started in 1990, so I'm now ca. 33 years into it. I've had lots of similar experiences to those of other folks here. Some pouchitis every couple of years. A handful of blockages putting me into the emergency room. Toilet frequency has stabilized to ca. a dozen times a day, and 0-3 times a night on average. This past year had to start wearing 'pads' 24/7 to keep from leaking through my undies. Still remembering the 8-week period with an ostomy bag between surgeries. Soooo glad that's not necessary. I could probably write a travel review, Toilets of America (and selected foreign countries). I'm sure you all know what that refers to. Since the concept of 'transit time' doesn't apply - mine is more like NASCAR races - I get to see what gets digested and what doesn't pretty darn fast. My best discovery so far is taking psyllium husk powder morning and evening to slow things down and reduce the burn a bit. (Regarding the latter, created a new syndrome name that my kids love: Burning Butt Syndrome, aka, BBS.) At age 76, my life is going well in spite of all the inconveniences. After all, what would have been the alternative?
F me, a dozen times a day seems high.
With Codiene phosphate, and say.. one meal a day, I might be x3/4 if I am VERY lucky.
I suppose on average its always SOMEthing wrong, if you count dodgy food, pouchitis, cuffitis etc.
Generally though I have found the WORST thing for pouches is to graze and eat "small things very often"
One meal a day, seems to work the best. Constant grazing, or breakfast, lunch, and dinner has never been the best way to go for me, naturally everyone IS different.
Hilariously, McDonalds has been the one food that is best for my pouch, I never really eat it of course, but when I have, its always never caused me a single issue, and has a sort of "sticky" quality as it moves through you, just being so gentle on my intestines. I never quite understood why, maybe it was the hygiene in the restaurants, maybe it was the carbs, or the meat being killed of any bacteria, who knows, but I found it funny.
One thing that happens with me, is that I can eat something, and my cuff can go absolutely MAD, flare up, swell so badly I can barely pass anything. Give it a few days to calm down, and its gone again. Very curious how simply eating something that hasnt yet passed the cuff, can kick off something like that.
Never got to the "bottom" of it, probably never will.
FYI, I take 60mg Codeine phosphate a few times a day.
