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A few questions about the J-pouch

Welcome to MeetAnOstoMate
17,233 Members
Posted: Sun Sep 17, 2017 9:28 am

Evening everybody,

 

I've been absent from this site for quite a few weeks now because I've been very busy with uni. It turns out that the subjects that the uni recommended that I study this semester were recommended with them thinking that I wanted to finish at the same time as if I hadn't missed a semester. Wise move.

Anyway, it's getting to that time where I need to be seriously considering my J-pouch surgery that's coming up on the 23rd of November. I have an appointment with my surgeon next month as a final official meeting before I go under the knife again. Whilst I've pretty much already all of these questions to him, I would like a second opinion. I understand that he's not going to be feeding me false information (unless he's a bastard), but I'd like to ask some serious questions, so here they are:

- How bad is the post-op pain? I didn't find my colectomy post-op pain to be too bad and I was hardly on any pain meds afterwards, though I had been flooded with blood transfusions and steroids for a week.

- Is the recovery really that much faster? I've been told that it's often significantly quicker than the colectomy, especially for me because I was in such a state when I had my surgery. I found that some of the hardest things were getting up without feeling like I was straining my core and standing for more than about 10 minutes without my back feeling sore. Is it like that all over again?

- How bad is pouchitis? I have spoken to someone with a J-pouch before who told me that it's pretty much like colitis but without the cramping. Also, once it happens once is it more likely to happen again, like a flare up? I never had multiple flare ups, just the one that pushed me over the edge, so I don't even know if that's how it works anyway.

- My surgeon is going to leave a couple of centimetres of what he called the "rectal cuff" so as to avoid making the operation significantly more complex because of the amount of nerves in that area. Does this cause issues other than a bit of blood every now and then? I imagine that there's still that increased cancer risk in the rectal cuff given that it still has colitis.

- This is quite a specific question, but I'm a little over 180cm (about 6ft I think), and have been struggling to get any heavier than 60-62kg. Would my general lack of body mass cause any issues? My surgeon is just happy that I'm not having to use steroids for this surgery, but I really don't want to drop down to 50kg again. That was atrocious.

- My surgeon also said that because the ileostomy will be gone I can pretty much eat whatever I like without worrying about blockages except for nuts, which he said might still pose a risk. Why are nuts still a problem if they are not exiting through the stoma?

- Probably my most important question, my surgeon told me that 95% of people keep their J-pouch lifelong, but how true is that? From what I've read, it seems like plenty of people don't like it. Of course the internet will provide heavily skewed information, but even the person that I've spoken to who has one told me that he probably wouldn't have had it if he knew what it would be like. What's so bad about it? Am I viewing it through rose-tinted glasses just because I desperately want to be rid of my ileostomy and mucous fistula?

Sorry for so many questions, but I have already been through one surgery with a serious lack of information so I don't want that to happen again.

Thank you very much for you input,

Hamish

Posted: Sun Sep 17, 2017 11:20 am

i had a j pouch for almost 30 years been through it all

Posted: Sun Sep 17, 2017 11:23 am

You have alot of good questions. if i can help let me know

Posted: Mon Sep 18, 2017 12:55 pm

 

Hungry Hamster,

Hope the martial arts are still okay. My view and I have seen a fair bit of the type of problem you have recently endured at different points in my life, and so have some experience; is go for the j-pouch as I don't see an acceptable alternative. I don't know much about j-pouches having crohn's not a condition like UC. Colostomies can work and be good for some, but for others if there's a choice - they may find that choice appeals - if that's you- go for it and one can never rule out every exigency, its like life - one has to be willing to take risks (of a reasoned nature); to move forwards...

Posted: Wed Sep 20, 2017 1:19 pm

 

Hungry Hamster,

There's a great thread on this topic which you will have seen. It seems to be a choice for and specific to the individual as to whether the j pouch or stoma works. I don't think its easy to generalise. For crohn's there's no such choice I think. What is known as "pouchitis" seems to be the issue. One issue I guess is your current experience of the stoma in all respects; that is something individual. If you go for a pouch it is worth asking what the status is then on a reversion back to a stoma etc (at this point I am moving out of my knowledge zone and self consciously admit this). S 

Posted: Wed Sep 20, 2017 1:21 pm

 

Hungry Hamster,

There's a great thread on this topic which you will have seen. It seems to be a choice for and specific to the individual as to whether the j pouch or stoma works. I don't think its easy to generalise. For crohn's there's no such choice I think. What is known as "pouchitis" seems to be the issue. One issue I guess is your current experience of the stoma in all respects; that is something individual. If you go for a pouch it is worth asking what the status is then on a reversion back to a stoma etc (at this point I am moving out of my knowledge zone and self consciously admit this).

 

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