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J pouchers - advice please?

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Posted 1/29/2014 6:54 PM (GMT 0)
Hi all,

I had my emergency colectomy/end ileostomy on January 2nd. Obviously it's very early days but I'm pretty sure in my mind that I'd like to go for a J pouch, sooner rather than later. Ideally I'd want it in the early summer of next year. I'm 19 and have already had to defer from uni this year due to illness - I don't want to spend all of this summer recovering from ANOTHER operation but would rather just enjoy 2014 and go in for surgery next year! :) That way I'll be all sewn up and re-routed in time for my 21st!

There's a lot of research to be done, but to start off I just wondered if anyone would be happy to share their general experience of having a J pouch. Good, bad and ugly, I really just want an accurate picture. What are the pros and cons, do you get on well with the pouch? Is it better than having the ileostomy?

Also I'd really appreciate some information about the surgery. I'd be having mine over the university holidays, and ideally wouldn't want to miss anymore study time (I'd be having the op in May and wanting to return in September). How long did it take you to recover? Any problems? More/less pain than the colectomy itself?

Any advice at all would be appreciated. Thank you all :)
Posted 1/29/2014 7:46 PM (GMT 0)
I've had my jpouch for 13 years; I love it.
I returned to work 3 weeks after each of my two surgeries. I returned to exercise immediately, which was encouraged by my surgeon.
The biggest negative for me is getting up at night; I could make dietary changes to effect that but I don't because I like having a diet high in fresh fruits and vegetables. I really don't have any other complaints. My life is predictable with a jpouch; I take no medications; I'm able to keep commitments; and I am able to hike and travel abroad with no problems.

In my years of being here; there is no perfect surgery for UC but there is a surgery that is perfect for you. You might want to write a list of pros and cons for each surgery type and make your decision based on what is the best fit for you. There is no wrong answer.

Sue
Posted 1/29/2014 9:11 PM (GMT 0)
In general without going into a lengthy post, I am very happy with my j pouch. I really don't have much to complain about and I don't have any real cons I can speak of. My life with UC was absolutely horrendous so this j pouch of mine has been a God send. I eat what I want, drink what I want, use the bathroom and average of 4-6x a day. I never have any urgency. I can hold it for a long time and use the bathroom when it's convenient. If I had to pick on something it would be the middle of the night bathroom visit. Many nights I sleep through but still many I don't. I'm the wrong person to ask about the ileostomy because I had a lot of trouble with mine and I couldn't wait to get rid of it. So for me going forward with the j pouch was a no brainer. Good luck with your decision. :)
Posted 1/30/2014 2:23 AM (GMT 0)
My experience is in my blog which is linked in my signature.

It's been almost six months since my takedown and life is pretty good. I still have some trouble with eating raw veggies and avoid high fiber foods like nuts and popcorn, but other than that things are very good for me. I do have occasional urgency but it's only when I hold a BM for too long, most often when I try to sleep in on the weekends... it's not the kind of urgency that comes on all of a sudden with no warning :)

The j-pouch construction surgery (step 2) was really hard on me. It was much more painful than the colectomy I'm sorry to say, and it took the longest of the three to recover from. But, you know, I did, and it was worth it.

I found the first ileostomy very manageable and I strongly considered keeping it forever. I do prefer life with the j-pouch because of ease with stuff like dressing to conceal the pouch, and being able to feel intuitively when I have to go to the bathroom instead of having to check a bag, but I also know that long time ostomates say that both of those things become very intuitive. I only had my ileostomies for ~7 months, and it flew by.
Posted 1/30/2014 2:26 PM (GMT 0)
I am 6 months in ... like Liz, step 2 was hard for me. But takedown was a piece of cake. The worst part was the butt burn in the early days, and that it was more difficult to eat certain things, like salad, at first. Now, I can honestly say I can eat anything (I eat popcorn every day, love it). I've been able to get off all meds, can now sleep through the night (although it took about 5 months to get there), and feel great. I go to the bathroom 5-6x a day, but never with any urgency I have had no leakage and no accidents. And while I've taken Lomotil since my step 2, I have finally been able to get down to just taking one or two with breakfast and dinner and that's it (down from taking 8 a day). I think I eventually will be off that altogether. It is definitely a journey, and you have to be patient with it at first - the first couple of months can be a challenge as your body adjusts, but things do go back to "normal" (whatever that means). Oh, and doing it over the summer should be perfect. I had step 1 in early April, step 2 in late May, and step 3 at the end of July, and was back to work Sept. 1 with no issues (and could've probably gone back sooner, but I stayed out as long as my disability insurance would allow).

Good luck in whatever decision you make ....
Posted 2/2/2014 12:13 AM (GMT 0)
Hi Ellie,

I've had my j-pouch for about 10 years. I suffered from severe UC for several years and finally had to give in and have the surgery. When I first got the bag it was such a relief to be relatively pain free and in control! I really considered not having the 2nd surgery. I was teaching middle school at the time and didn't want to miss any more school or miss out on my summer either! However, the decision was made for me when, right before school started, I had a severe blockage and underwent the pull through surgery at that time. It took a while to adjust to the j-pouch but I have to say I'm glad I did it. The first year or so was rough for me but I had really supportive friends, family and folks on sites like this. I dealt with some pretty severe rectal pain and itching but with some experimentation and patience I have worked through those issues. I still have flare ups, in fact I'm dealing with one right now which is why I was seeking out some other views on the itching flare ups. But even with that I am currently training for a 10k run this spring and am not limited in what I do. As long as I watch what I eat and maintain good skin care I'm good to go! Keeping informed and up to date, have good communication with your doctors and allow yourself time to heal and adjust and I think you'll be fine. Best of luck!!

Initial diagnosis Proctitis June 2001
Diagnosed with UC, pancolitis December 2001
Predinsone - 60mg daily - worked for about 6 months
Several other treatments - all failed
Went from 160 lb. to 106 lb. in the 6 months leading up to first surgery
Colon removed April 2004
Pull down - j-pouch August 2004

Post Edited (DMattNott) : 2/1/2014 5:20:18 PM (GMT-7)

Posted 2/3/2014 10:26 AM (GMT 0)
Thank you all of you for the advice!! :) Glad to hear that people seem happy with their Jpouches. I'm not eligible to have my step 2 for a while yet as my step 1 was done in such an emergency situation/bad health. However, soon as I can I hope to get it done. My 21st (October 2015) is my goal to have everything sewn up and back inside!! ;)

Did anyone have a laparotomy (full stomach cut) for step 1? I have and I'm wondering whether I'm going to be cut along the same line for step 2 or whether I'll end up with two scars (not that this really matters a great deal seen as scars are the least of my concerns here)

Thank you all again xxx
Posted 2/3/2014 5:06 PM (GMT 0)
Yes I had the huge mid line incision for step one as well (Mine is from the bust all the way down to my c-section scar). The second surgery was cut on the same line but started at my belly button and went down from their. I can't even tell it was done twice in that area.
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