Hi,

I’m looking for some advise regarding my J-pouch redo.
I’m 32 years old, from Israel.

A year ago I went through a j-pouch surgery (colitis) and due to complications I’m still with my temp stoma and a very bad infection in my stomach , fistula and a leeking pouch.

I’m scheduled for an operation in the coming September at Dr. Zane in Canada who will try to take out my old pouch (that I never used) and to make a new one.

I would very much like to hear from people who went through a similar operation.
My big fear is to make a new pouch and it won’t work and then make another! surgery to take it off. That means a lot of pain and continue to keep my life on a hold for 2 years.
And for what? What are the chances my second pouch will work well? How many times will I go to the toilet? Is it better for me to just give up and to make a perm stoma For a better life quality?
I’m scared that if it doesn’t work out ill be to old to bring children…

Oww…I hope you have some answers because I don't know what to do...
Any idea will be grate!

Thanks, Ruthi

Ruthi, I feel for your dilemma. I have no real advice for you but to say that you need to decide what things are most important to you and what you are willing to do to have those things in your life. Here's my story, if it can be of any help.

I had a pouch done after a 6 month battle with UC. Had chronic pouchitis from day one. After 3 1/2 years of non-stop antibiotics and trying all kinds of other treatments, I decided enough was enough. I wasn't offered a new pouch, because the drs felt mine worked fine. But I felt awful all the time, hated being on the drugs and living around the pouch. Had I been offered a new pouch I wouldn't have done it.

I decided on a perm ileo because I was 30 years old and felt like I was living the life of an 80 year old. Unable to stay up past 9pm, having to stop eating by 6pm and even then still getting up 2-4 times a night. I was nervous about traveling, was starting to have side effects from the meds and I too felt my biological clock ticking. I got married at 27 and had hoped to have at least one child by 30, but it was not to be...

My surgeon suggested getting an end ileo and just disconnecting the pouch. THough I wanted the pouch out, he convinced me to take this step because it meant a shorter less invasive surgery. I got worse. I still had pain, still had pouchitis (something the dr told me I couldn't get iwth a disconnected pouch) and developed a bunch of new symptoms. 18 months after this surgery I had the pouch out.

For me that was the answer. I recovered very quickly, without any issues even though pouch removal is more complicated than even creating the pouch. I felt better immediately, haven't taken any drugs for my GI system since and have been able to live my life completely on my terms.

After 18 months of trying to get pregnant on our own, we turned to IVF. I was 34 when I conceived my son through our first fresh IVF cycle. He was born in Jan 2006. I did a frozen IVF cycle in May 2007 but miscarried. In Nov 2007 we did anotehr fresh cycle and on Wednesday I will deliver a daughter by c-section.

For me, the decision to ahve the pouch out was about not wanting to spend any more time trying to make something work. I wanted to take the steps that were most likely to be successful so I could get beyond health stuff and back to living like a normal 30 something. For me that meant a perm ileo. I've never regretted the decision and would do it again in a heartbeat.

The thing you ahve to be sure of though, is are you really done? How would you feel if you went to a perm ileo and 1, or 2, or 5 years later they found a solution to your problem or a new treatment? For me, the living I've done since the removal was worth the possibility that they might come up with something new. It doesn't bother me that the ileo is for the rest of my life. But I knew that going in. If you aren't there yet, then you should consider the re-do. If you are, a perm ileo may be the way to go...

Let me know if you have questions and good luck wtih your decision...

Dear Jill,
I cant thank you enough for sharing your story with me, it really touched me and made me feel hope for the future. I don’t want to come through as to much of a sensitive girl but I feel like this decision is the biggest one I have in my life and I fear the consequences of “missing the train”.
I understand your decision that was right for you. My biggest problem is the aesthetic one. All my life I tried to be beautiful and desired. I have a very nice body (and very average face) and my body is like my “strength” and I’m scared loosing it. It’s what makes me feel like a woman…

I have a boyfriend for the last 2 and a half years. He’s been with me trough all the hard times and he is very supporting. He told me that I should do what is best for my life quality, in other words have the bag. He wishes to start our life together healthy and happy.

I really don’t know where I stand. I wish someone would just tell me what to do its childish, I know, but it’s so hard and frustrating.

I’m so happy for you having children and I wish you all the luck in the birth.

(I hope I haven’t made to many mistakes in English and you understood what I wanted to say)
Ruthi

I had j-pouch surgery after 3 years of UC on August 8th 2007. On August 11th, mine perforated (my 24th birthday), and then August 13th, they made me a new one.

While of course my situation is different because I never was able to try my first jpouch, I have to say my second one is deformed and will probably never be useable. At the time I was glad not to have a permanent ostomy, but now almost a year later I still have one. I believe eventually I'll have to have the jpouch out because it causes me lots of problems. I'm very happy with my ostomy and kind of wish I hadn't tried for the second jpouch.

Just weigh the quality of life issues. I'm not even sure if I could get reconnected right away that I would. I can eat/drink anything I want now.

Ruthi, your English is great!

I can understand the body issues. While I've never been particularly body conscious, it was a part of my decision. My husband actually suggested the perm ostomy 1 year after I got the j-pouch. I wasn't ready to do it until 2 1/2 years later. After I had the pouch out, my husband told me he purposely brought up a perm ileo early on so that I would know it was not an issue for him and the decision could truly be mine. Sounds like you are lucky and have a similar kind of guy.

You know what? I'm 9 months pregnant and I've gone out with my bag peaking out of my shirts. My husband suggested I wear a bikini and other people could just deal with it. Never having worn a bikini pre pouch, it wasn't my thing, but it is funny how when you feel healthy, you really don't care about the same things you did before.

Don't rush the decision if you don't have to. You'll know what the right decision is and when it comes.

Ruthi,

This is a big decision, but you have a good guy supporting you. I too was hesitant to give up having a good looking stomach. I am 24 and so it can be hard to give up what you feel is a part of your youth or an asset to your attractiveness. I am married and I know that my husband would rather have me healthy than have a perfect looking body. It may sound a little bad saying it like this...but men need affection and physical intimacy and when you are sick it is hard to give to a partner. So for that reason and many others, a man that loves you will have no issue with your having a bag. It is important however that if you stay with the ostomy to do it for yourself because you think it will make your life better.
With that said, many people have functioning pouches, you might regret never giving it a try. Only you can know if you will have regrets. Best of luck

Thank you all for your replies

Andrea, the ability to eat everything is a big issue for me. I was very sick for 8 years before the surgery and I couldn’t eat anything! It is nice to be able to eat vegetables and fruits without feeling so guilty…it really is an important thing and When I weigh my options its out there…
I too haven’t tried my pouch yet so I don’t know what to expect. I hear there are so many problems with a second pouch and that’s why I’m asking here for advice.

Jill, it’s funny, my guy told me to before I thought about it. Maybe men are more logical so they can see the truth without emotions.
I talked to him (well cried to him) yesterday about the bikini. For now I can’t imagine showing my stoma off and Israel is a small small country…

Marcene, what about the skin isue? In the end doesn’t it bother you just the same as being sick? Here the summer is crazy and it itches all the time…
You are so young but much more brave then me…

One more question to all of you: have you consider having a k-pouch?

Hi Ruthi,

You've had some excellent advice and support from above.

As you know the decision to give up on your j-pouch has to be yours. Hopefully though we can offer some insight into life with or without a j-pouch which may help you with your decision.

I too have a perminent ileostomy after an 8 year battle to save my j-pouch. I also had body image issues but having coped with a temporary ileostomy before my j-pouch I knew a few tricks of the trade so although I grieved my bikini days I knew there were ways that I could still show off my figure without anyone knowing that I had an ostomy.

There are lots of really sexy underwear suitable for ostomists. I actually just buy the lycra body shaper type of underwear which holds everything in nice and snugly. I wear my bag at an angle across my belly so that my panties support it and it is held very close to my body. If you prefer there is also some stunning ostomy wear available which you would never guess was especially designed for us. Check out the White Rose Collection here:

http://www.whiterosecollection.com/acatalog/Ladies.html

I use an antiperspirent deoderant under where my bag sits (not under the wafer) which really helps to stop that itchy sweat rash during hot weather. Or you could make some cotton backs for your bags by using the bag as a pattern and cutting a hole in the fabric so that you can thread your bag through. This will keep it away from your skin and the cotton fabric will help keep you dry and cool.

My only regret is that I didn't go to the ileostomy sooner as I could have saved myself 8 surgeries in as many years, but that is only my experience. There are many happy j-pouchers out there living very healthy normal lives.

Good luck and take care.

Shell

Hi guys,

I had UC for 30 years on and off (now 53), eventually it got the better of me and had my colon removed Feb 2007 and a ileostomy. I went for the J-Pouch option and that was done Feb 2008. This week I will have the take down op done.

My older brother also had UC for only 1 year at 52. He went for the perminant ileostomy op as he could not face further ops for the J-Pouch etc nor it's potential complications.

My brother has been 100% with the bag and gets on with his very active life. He knows that, bar having the bag, there are no more complications and that is that!.

Whereas I have gone for the J-Pouch option. I am very worried about the take down op and the success of pouch and all the potential complications. Today there is a big part of me regreting not just going for the ileostomy. I have been able to do everthing with the bag and I lead a very active life including extreme sports. I am not sure that I will be able to do this with a J-Pouch.

So time will tell if I have done the right thing. My surgeon said that if he was me he would have a J-Pouch so let's see if he is right.

I feel that if the bag system works (no leaks and not too fiddly to change etc) then there is a strong argument to stick with it. I wonder if it takes more courage to decide to stick with a bag than to go for the pouch because of the finality of the decision.

If my J-Pouch proves to give me more hassle than the bags then I am going to be very very disappointed not least because it could involve further major surgery to remove the pouch and go back to the ileostomy.

I am hoping that we don't hear from perhaps hundreds of folk that have successful j-Pouches on this web site because they are busy getting on with their lives. If however, I was to go by the postings on this site alone I would never go for the J-Pouch option as its sounds like a disaster!

I will keep you posted.

Paul

Hi Paul,

Yes you are correct. The reason there aren't so many success stories about the j-pouch here is that this is a support site and by it's very nature it attracts those who are having problems. There are many thousands more j-pouchers who don't need this site because they are out there living happy healthy normal lives.

Who is your surgeon? Where did you have your surgery? I had all my j-pouch related operation in Oxford at the John Radcliffe because our hospital here on the island can't really handle complicated specialist surgery such as the j-pouch.

Good luck with your takedown. Keep us posted as soon as you can update after your op.

Take care.

Shell

I wasn't considering a k-pouch because I have crohns...but really the only problems have been with perianal disease(fistulas)I didn't want to risk a k-pouch and end up with crohns in my small bowel. I do think I would have gone with one had it been strictly UC. By skin issues do you just mean irritated skin and such? I haven't had any with this ostomy. But after two temps in the past I feel prepared to deal with the basic problems. It is crazy hot here in the south and I haven't dealt with it much because I'm inside most of the day with my young son. I'm hoping to move someplace with less heat and humidity after my husband is done with his job in 2 years. Like Shell said. There are many successful j-pouches and we don't hear their stories. I do not regret trying the j-pouch and I wish there was a treatment more effective for fistulas because my j-pouch worked just fine. But I needed to move on from bum issues, and I needed to let me family move on as well. It is hard for your loved ones to see you struggle and to be in pain. They feel helpless and want to see you at your best again. I had to pray long and hard and even then I still felt like God was leaving the decision up to me. There is no right or wrong with this just what is right for you.

Shell, wow, thanks for the good advice and the link, I didn’t know there is such a big world out there for this kind of situations.

Paul, I’m sure all the good stories are not here. I wish I could hear from someone who went through a second pouch and is happy with the result. Good luck with the take down. There are really good chance that it will work for you. Don’t be discourage by the posts.

Marcene,the skin is very irritating but I have a meeting with a stoma nurse next week so I hope she can help me. I understand the will to move on and I hope ill get there too. Thanks.

I am a ten-yr cancer survivor, currently living with a j-pouch. In addition to colon resection, chemo, radiation, I had a colostomy - reversed to a j-pouch, which was ok for 2 years. For the last 3 years, I have had 5 hosptializations - 2 resolved bowel obstructions and 3 surgeries - partial bowel obstruction, hernia repair/bowel obstruction, and now a sphincteroplasty (for more continence). My surgeon told me to resume normal diet - now I'm impacted. When is enough - enough? My doctor makes me feel like I'm being a quitter or whatever when we discussed my options, ie returning to the colostomy. I realize this is a personal choice, but has anyone else had to look for another physician while making this decision?

I am so grateful for my life, and I don't mean to whine, but 14-20 times to the bathroom... we're just "going to try this one last option to 'save' the j-pouch." For what?

It was the FOURTH surgeon I consulted who was supportive of getting rid of my pouch. The otehr three wanted to "save" the pouch. Ironically the fourth surgeon was the only female and I do think she paid more attention to what I wanted out of my life.

I don't look at returning to an ostomy as giving up, but as moving on.

Ruthi,

I am responding because I have just had surgery to create a second j-pouch. It is too early to know if it will work (I have a new temporary ileostomy). I wanted to try the j-pouch again because I had only 6 weeks with the first one before I had to have it dis-connected due to a leak and some abscesses. I think it would have been different if I had struggled with the j-pouch for years. I had problems with my 2 previous ileostomies (skin issues, leakage, tape allergies) so I would prefer a j-pouch, if it works. If not, I might consider a K-pouch, or I might go to a permanent ileostomy and hope my skin could manage.