J pouch surgery, do you regret it? will you do it?

Ive been thinking a lot lately about this and have thought about the J Pouch surgery. While my colitis is nowhere near as bad as others Ive read (mine is very mild, just a lot of bleeding…) I don't like the idea of spending the rest of my life living in fear of flare ups, living everyday feeling that if I take one bite out of whatever food I come into contact with, that it may cause yet another flare up… Im tired of worrying about everything single ingredient that goes into my body, it's exhausting, it's taking up so much of my time, my mind, my thoughts.. it;s taking away from my having the ability to take care of my son as a single or happy mother. I can't be happy :'( Im exhausted mentally to the point where I just don't want to get out of bed everyday. I'm also a full time college student on my way to a degree. My life is just stress stress stress and with this added condition, I feel like my life has been taken away from me… It's just not fair is how I feel right now..

Anyway, Ive been thinking about how if my condition is to worsen (as it seems to for a lot of people with this disease), what are the risks associated with getting the j pouch surgery? is it a good idea (as in will i be able to live a normal life the way I did before this unexpected disease took over…)?

I would love to hear from others and how they feel about having gotten , or will be getting the surgery done and what made you decide to go for it? (was it the last resort after all meds stopped working? or did you decide togo for it even though you are relatively healthy but just didn't want to live how I explained above?)

No regrets on my surgery, gave me my life back. I'm pretty closely living life the same as I did before getting the disease. Had to make a few minor adjustments (I don't drink beer anymore or eat pasta) but overall - I'm really glad I made the decision. My decision to get surgery was somewhat elective - I was in a flare, not a terrible one but I had taken for the most part all the meds for UC except Humira. I was just tired of the flare ups - was getting to the point where I was getting flare ups once a year avg a 6-month duration.

Ive been in a flare for 2 years, although relatively mild, its mainly the bleeding that I can't gain control of. I had a colonscopy about 3 weeks ago and it showed mild inflammation with no ulcerations whatsoever…

What kind of risks/challenges come with having the j pouch surgery?

I think you would get a better understanding by visiting the Ostomy forum.

No regrets here! I'm going on 4 years with my j pouch. Life of awesome being UC free. And drug free too. My sister and my uncle both have long time j pouches and they have has great success too. A super experienced surgeon is a must for this procedure.

Maria2007 said...

ByeByeUC said...
No regrets here! I'm going on 4 years with my j pouch. Life of awesome being UC free. And drug free too. My sister and my uncle both have long time j pouches and they have has great success too. A super experienced surgeon is a must for this procedure.

Happy to hear you're doing well! What is your diet like post surgery? I ve read some articles etc. about how we still need to watch our diets (not that I plan on going back to eating the junk I did before UC, but it would still be nice to not worry so much about watching every single thing I eat…)

I eat whatever I want. I do not have a restricted diet. After all the years dealing with UC when I really couldn't eat anything, I'm not holding back now! Some foods may bother my j pouch more than others but I do not let it stop me from eating them. When I say bother I mean I may have to use the bathroom more or I get some butt burn. But nothing horrible. I use a cream called Calmoseptine if I get irritated and it works really well. I have no urgency at all which is the main thing in my opinion. I could care less if I have to use the bathroom 4 to 6x a day as long as I have no urgency. :)

ByeByeUC said...

Maria2007 said...

ByeByeUC said...
No regrets here! I'm going on 4 years with my j pouch. Life of awesome being UC free. And drug free too. My sister and my uncle both have long time j pouches and they have has great success too. A super experienced surgeon is a must for this procedure.

Happy to hear you're doing well! What is your diet like post surgery? I ve read some articles etc. about how we still need to watch our diets (not that I plan on going back to eating the junk I did before UC, but it would still be nice to not worry so much about watching every single thing I eat…)

I eat whatever I want. I do not have a restricted diet. After all the years dealing with UC when I really couldn't eat anything, I'm not holding back now! Some foods may bother my j pouch more than others but I do not let it stop me from eating them. When I say bother I mean I may have to use the bathroom more or I get some butt burn. But nothing horrible. I use a cream called Calmoseptine if I get irritated and it works really well. I have no urgency at all which is the main thing in my opinion. I could care less if I have to use the bathroom 4 to 6x a day as long as I have no urgency. :)

Well put Marianne, I would agree. And if I feel like it - I will just take some Imodium before I eat or drink something that I know will bother me.

I regret having surgery, but understand that I had Crohn's and not UC, which changes at least two things: 1) can't have a j-pouch (massive, massive bummer) and 2) the Crohn's can come back, so I don't even feel "free" of disease in the most meaningful sense of the word.

J-pouch can work wonders for some people, but it isn't always a panacea. Sometimes you're just swapping one bad thing for another. Bit like how I feel with my surgery, in all honesty.

People say they eat whatever they want but from reading the ostomy board, I notice a lot of people eat certain things to slow output or to thicken output. People also eat earlier to avoid getting up more times in the night to use the bathroom or "empty". It's not all a bowl of cherries. Better than active UC, sure, but nothing beats a functioning colon in my opinion. People also use the bathroom a lot more after. I don't think pooping 6x a day is ideal. Dealable, sure, but not ideal. Oh and another thing, 6x seems to be the "ideal" result, some go 10x a day.

notsosicklygirl said...
Better than active UC, sure, but nothing beats a functioning colon in my opinion. People also use the bathroom a lot more after. I don't think pooping 6x a day is ideal. Dealable, sure, but not ideal. Oh and another thing, 6x seems to be the "ideal" result, some go 10x a day.

My surgeon told me that 83% of his patients go an average of 4-6 times a day after their j-pouches develop and adjust.

I'm on step-1 of a 3-step j-pouch. I feel great, sleep through the nights and empty my bag about 2 times a day. My bag is only temporary and I'm adjusting to it.

notsosicklygirl said...
People say they eat whatever they want but from reading the ostomy board, I notice a lot of people eat certain things to slow output or to thicken output. People also eat earlier to avoid getting up more times in the night to use the bathroom or "empty". It's not all a bowl of cherries. Better than active UC, sure, but nothing beats a functioning colon in my opinion. People also use the bathroom a lot more after. I don't think pooping 6x a day is ideal. Dealable, sure, but not ideal. Oh and another thing, 6x seems to be the "ideal" result, some go 10x a day.

Absolutely spot-on post, nssg.

I am under no illusions if I got an ileorectal anastomosis (the only reversal I could possibly have). I know it will be absolutely nothing like I was pre-Crohns or even mild Crohn's. I'd certainly be going to the toilet several times a day, along with probable urgency (at worst, incontinence), butt burn, and IBS.

It would depend on how much I want to live without a bag (and if I am suitable for a reversal). I do think I got rid of my colon a bit too hastily. It most likely was a gonner and couldn't be saved, but I fear the colitis being miles worse without a colon (this is what my surgeon told me; without six feet of colon to absorb water, stuff just passes straight through you).

ks1905 said...
and empty my bag about 2 times a day

I don't see how this is physically possible.

I empty my bag about 6-7x a day. I could probably reduce it to 4x if I was really determined and didn't mind going around with a bulging bag and increased risk of a pressure leak.

Post Edited (NiceCupOfTea) : 1/7/2014 11:17:04 AM (GMT-7)

I'm sorry, but I've been burned one too many times to take anybody's word on returning to "normal" after surgery. I mean literally anybody: it doesn't matter who you are. I still would be sceptical.

What I have now is not 'normal' to me. Normal is pre-Crohn's, having a digestive system that I took utterly for granted. If surgery would restore me to that for even just 10 years, I would have it done tomorrow. But I know it won't: I know it will be a series of compromises that I'll have to learn to live with and wonder if it is better or worse than having a bag.

ks1905 said...
Believe me it's only twice a day (once when I wake up and once before bed) and I only let it get to 350ccs or less (usually about 250ccs) before I empty my bag. I'm a novice at this but I think it depends on where your stoma is located. When I have my second step of the surgery I think that my output will get more liquid/watery and increase which will make me have to empty the bag more often.

Well, my stoma would be in roughly the same spot as yours: lower right, like all ileostomies.

I dunno, just have never heard of anyone with an ileostomy only emptying their bags 2x a day. Also your output sounds low for somebody who's only recently had surgery, but I suppose it does vary.