J-Pouch. To have OR not to have

Mid February next year I'm going to be having surgery. I opted for it as opposed to waiting until I'm on deaths door and need to be rushed in, the body is already beat down and then throwing it into surgery can cause a lot of complications.

After speaking with a surgeon last month, I'm feeling good about it and I'm excited to hopefully get my life back. Been on hold for years, I look forward to actually being able to go out, travel, work etc..

From what I have been told I have UC. During the surgery they will be removing 90% of my large bowel and ill have an ileostomy. That will then be sent away to be tested. One end of the scale you have UC, at the other Crohns but sometimes you can have a combination of both.

Depending on what I have a J-Pouch will be an option. Now the whole idea of an internal pouch does sound good but as my surgeon mentioned, it's another surgery the body has to go through and sometimes patients don't see a difference at all, they still go a ridiculous amount of times a day just like before. This can be reversed but he said you have to give it a good 2 years minimum before they will do it.


Now I don't mind the idea of an external bag. I have come to terms with it and if it allows me to live life again, I'll be more than happy to keep it.


Was hoping to hear some feedback from members with J-pouches. What made you go for it?

Thanks
Ben

I know you asked for responses from people with the j-pouch. I have a permanent ileo..however, I am 70 yrs old. I had my operation when not quite 64. You are smart in having the operation before you become too ill. Mine was not an emergency, but I was a lot sicker than I would have myself believe. I think that fact hit me between the eyes when I overheard the nurse, when I was having my pre-op testing done, reserve a spot in ICU for me following surgery. She said, "I need a bed in ICU for a high risk patient following proctocolectomy surgery." When she returned to the room, I asked, "Were you talking about me?" She was very embarrassed that I overheard so she tried to say it was a precautionary measure because of my age. My surgeon told me I was not a candidate for j-pouch, but, like you, I was just so sick of being sick, I had already accepted the fact I probably would have a bag. Long story short, I have no complaints. Because I still have my anus, and, unfortunately, four years post op, the disease found itself in that weee little bit I have left, I do need to have yearly biopsies, but there is no prep for that and they do put me out. There is no dysplasia and no cancer. I am having success using the proctofoam, so maybe next year the disease will be in remission in that area. The surgeon said it would be too big a surgery to remove the anus at this point, for me. I have NO regrets, living life to the fullest and enjoying my youngest grandson, who is 2 yrs old! Best of luck to you in whatever type of surgery you choose. You will not be disappointed. You will have your life back!!!!

I looked at all 3 viable options; j-pouch, BCIR, and permanent ostomy. I talked on the phone with people who had each surgery and got feedback. I then made a list of pros and cons for each surgery and weighed it against my lifestyle and what challenges (and there are challenges with each choice) I was willing to live with. That is how I made my choice. It's a personal decision that only you can make.

Sue

Thanks for all the responses, been great reading through them all. That sounds like a solid method SueBear, write out the pros and cons of each and decide from there.

I know ill be able to get on with either but by the sound of it I'm best waiting to I actually have the operation, see how goes for a months and make a decision. What worries me the most is I have the external pouch and things are great, my life is back but then I decide it's worth going for the J-pouch only to find I'm going to the toilet a lot more & various other problems, it's several years before I can get it reversed.

Decisions, decisions.

This forum & the J-Pouch one have been super helpful

Hi imben

I had emergency surgery in 2006, and had no clue on what to expect so I went with my surgeons advice and had the three steps to JPouch. Early on it started working pretty well and I continued to travel internationally for work and lead a pretty normal life, but I was on 8 Imodium a day as well as supplements to reduce gas and bloating. My JPouch worked well for about 8-9 years and on a good day I had just one BM, but on a bad day up to 10. There were more good days than bad so it was ok. In the end my JPouch stopped working and I had pouchitis frequently, and also due to multiple internal adhesions I suffered immense pain when the pouch was full or bloated with gas. I now have an end ileo and the JPouch was not able to be removed.

I actually said to my doctor today that with the benefit of hindsight, I should have stayed with my first end ileo, as it was the best health I had been in for some 25 years. The ileo I have now is not as well behaved.

Having said that, it was a journey and I am glad I lived through it. The living without UC is one thing, but I also had 10 extra years of 'normality'. I also have the option of reconnection if I ever forget about the issues of the past few years.

On balance there are pros and cons for both, and it is a personal decision , however, my experience is not so common, and your own personal circumstances will determine what you do. Your age, general health and mental commitment to whatever path you take will make a huge impact on the success of your chosen option. But when you make that decision, jump in with both feet and don't look back.

My mental approach was, and still is, that it doesn't define me and I won't be restricted by it. I still travel and am very active, despite 4 surgeries and my current appendage. If you are prepared for anything, you can do anything. If you let it stop you from doing things then it becomes a mental battle.

What ever you decide there are many people here and on JPouch.org who have loads of advice and tips that you won't get from professionals...

Best of luck from down under!!

Cheers

Richard