Hi,

My name is Kim and I am 34 years old. I have had UC for 10 years now but have had a flare-up for 2 years straight. I can't get it under control with meds...prednisone 80mg, imuran, and remicade. My doctor is recommending surgery - ileoanal anastomosis. I think this is a j-pouch? Anyways, I don't know if I should do it and wanted to talk to people who have had the surgery. It's so scary to me. Is this surgery good? Is it worth it? Any help, advice, etc would be appreciated!

Kim

Kim,

Welcome to the group! Yes, the ileoanal anastomosis procedure is the J-pouch. You will find a ton of information on this site from people in all stages of the process, from contemplating surgery to those who have had pouches for decades. I would suggest you search around on some of the forums to see what people's issues are with the surgery. Your doctor would be a great resource of information as well. The surgery can be done in a varied number of steps, depending on the individual. Some heal quickly and completely, others take longer and have issues. It's certainly a major decision that involves a great deal of thought. I think all things considered, most people are pretty happy with their pouches. It's important to keep in mind though that it will be a very different way of life from the one you have now with your colon. Not necessarily worse, just different. I am one month post takedown and am very pleased with the outcome thus far. You may want to look at the diagrams of the pouch on this site to give you a better idea of what is actually done during the surgery, and take a look at the dietary guidelines for ostomates and pouchers as well.
Good luck to you!

Thanks Michelle. I hope you are feeling okay. What is takedown? Is that the first surgery?

Kim, Michelle made a lot of good points. I figured I'd add my two cents worth. It sounds like you have suffered quite a bit and continue to suffer with UC. Not healthy. Most individuals feel much healthier and have a better quality of life once they have rid themselves of UC and have their J-Pouch. Typically, you have much freedom from the bathroom and the "UC lifestyle" because you have a significant degree of control. It allows you the confidence to be in public without having to wonder where the bathroom is everywhere you go. Again, as Michelle said, it is not like having a colon again, but, in my opinion, it is LEAPS and BOUNDS better than living and dealing with UC. Good luck with your decision.

Someone chime in if I mislead Kim please...

1st surgery typically is the j-pouch and a loop ostomy (to allow the j-pouch and other internal parts time to heal.

2nd surgery is what people here refer to as the "takedown" I believe. Removal of the loop ostomy and you are back to full anal functions with the j-pouch as your new colon to a lesser degree.

The other thing is doing it all in one step, which I shall experience very soon. It seems less common with posters here.

I've lived with an end ileostomy (or whatever term it is) and had a bag for 3 years now. I was steriod dependant with my UC and even if the bag was permanent, it is still a life altering step in the right direction. It gave me back my life.

Hi thanks for replying. That is what I am wondering most...if dealing with no colon is better than dealing with one that doesn't work. I just keep thinking if I give it more time, eat the right foods, take the right pills that it will get better. But I am starting to think it won't. I am totally steroid dependent...but it isn't even helping anymore. I just get the nasty side effects...depression being one of them. i am glad to hear that you have your life back after surgery!

Hi Kim,

this is a good place to come for both people living with UC and living with an ostomy or jpouch.

I can't send the direct link but in June there was some good discussion on 'For those not forced into surgery how decide to have surgery'. The post is on page 7 of the threads, and was titled 'For those not forced into surgery', and was started by Oregon_Deb.
You might want to read around in there for some interesting stories of how people decided on surgery since as you are experiencing it is an extremely complex decision. And as my surgeon said 'the biggest decision of my life' so it is good you are asking questions.

Also, when/if you are ready and would like to see photos from my July 6 surgery click here (sorta graphic so open them with caution). But please note like Carl was saying there are 3 step surgeries, 2 step, 1 step, etc...so everyone varies some. I had a 2 step done, and I'm 31 years old, and now I have a jpouch inside but I have a temporary ileostomy while the jpouch heals.

http://www.flickr.com/photos/markandmegan/sets/

FYI, it is 2 weeks today and I feel free of UC which is incredible and for me the surgery is already a success as I feel healthier than I have in many years living with a constant UC flare. Nevertheless, the decision to have the surgery was something that took me/us years to accept and execute.

Mark

If you have been on prednisone for several months without any improvement, you are not only steroid dependent, you are steroid refactory. In this situation, surgery is really your only option to have anything resembling a normal life. Your real options are what sort of surgery do you want to have, not whether you should have surgery.

Basically, you have two major options and one minor option. The two major options are the ileoanal anastomosis (j-pouch) and end ileostomy. The j-pouch has become the gold standard for treatment of UC in the past 20 years or so, with some technical refinements over the years. If you are healthy enough, you could be a candidate for a 1-step procedure, without the diverting (loop) ileostomy. But, since you have been on steroids for a long time, it is very unlikely that you would fall into that category. If you are really in bad shape, three steps could be required (colectomy with end ileostomy followed later with the j-pouch creation with loop ileostomy, then take down of that ileostomy). The satisfaction statistics are as high as 97% in the best centers and 90-95% in smaller centers. I had a 1-step j-pouch in 1995 and have never regretted it.

It is not perfect, there are trade offs. You will have multiple BMs per day, but without urgency (after the several months of adaptation while the ileal pouch adapts to its new role of water absorption).

The third minor choice is the continent ileostomy, where an ileal pouch is used, but empties through the abdomen via a drainage catheter several times a day, so no external appliance is needed. This is known as a Kock pouch and used to be common, but has been virtually replaced by the j-pouch. There is also a variation of this called the BCIR (Barnett Continent Ileostomy Resevoir), but it is done in even fewer centers.

I suggest you meet with a surgeon for a consult so you can gather information and research this well before making a decision one way or the other.

Jan

My husband is 41 years old and also had UC for 10 years. He went through 2 and a half years of flare-ups. We both did alot of research and talked to people who have had the surgery. It is wonderful how forthcoming and helpful people can be. He had the 2 step j pouch surgery. His takedown (2nd step) was July 10th. His blood pressure was always borderline for needing meds (from all the uc pain) Since the surgery his bp has been normal. He had a few bumps in the road but he's not sorry at all that he decided to go through with it. Make sure you do your research and you feel peace about your decision.

Jeans

thanks so much for all of your input! i will let you know what i end up doing.

Hi Kim,
I just thought I would share my positive experience with having the "j-pouch" surgeries.

I am 35, and suffered with UC for 16 years. I was on every type of drug/steriod combination at some point. I finally ran out of options late last year. So I began to research, and ask questions here, on this wonderful site. I also met with some of the people here at a gathering in Boston. I also met with three different surgeons, before choosing. The third surgeon I met with was the charm, and was recommended to me by MicheleR, another member/angel here.

My first surgery was on 1/2/07, and my takedown was 3/1/07. Even though it was a hard 3 months, I am so glad I went through the surgeries! I have never felt better. No more drugs,pills, steroids, or constant pain. I eat almost ANYTHING I want, no buttburn at all, no accidents, and I decide when I WANT to use the bathroom! I really am blessed.
Good luck, keep us posted.
Monique

Hi Kim,

Sorry for what you are going through. You sound a lot like my husband - became steroid refractory (and steroids caused him a lot of damage), went on to the various immunosuppressants (e.g. 6-MP, etc.) and then tried Remicade infusions. Nada. Had the 2-step in Jan and June 2006. He has actually had issues with his j-pouch but despite that is still MUCH better off than he was with his UC. He had gotten so sick, so fat from the pred, high blood pressure, arthritis, etc. He really felt like he was going to die. He was only 38.

I will tell you this - who performs your surgery is critical (as well as the hospital). My husband had an excellent surgeon however the hospital (a large teaching hospital in PA) had a high infection rate and both times he got severe infections which increased his stay. I see you are in CA. Whereabouts? I am in San Diego. There is a great surgeon here in La Jolla - Dana Launer. He does k and j pouches.

Making the decision is a tough one and you have to make it on your own and be ready. As Jan said, your life won't be the same with a pouch but it can still be good, and better than being sick all the time. I wish you all the best!

Hi Kim
I just want to give you another perspective - that of a permanent stoma. Since you are researching your options I feel you need to consider this option too. Have a look at www.ostomyland.com and www.ostomates.org to get a perspective on life with an ileostomy. I had one temporarily and after 3 months could go and do anything, and I am very active. I could also eat anything. I had a reversal because I have most of my colon intact (I had cancer)all the same restoring function is still a hassle although its getting easier. My personal view was that if I had to have most of my colon removed due to the cancer or if my colonic jpouch doesn't work in the long run I will go for an ostomy. This view is not popular, but it would be my choice because I actually would find it more convenient because of my lifestyle. My lifestyle includes working full time, attending conferences and meetings and running for fitness, I also travel O/S regularly and for work and I can do all these things comfortably while sporting an ostomy.

Ultimately you will do whats right for you at the time. I agree that you must get the very best colorectal surgeon you can and one that is highly experienced in the procedure you're contemplating. It's not easy, my thoughts and wishes go out to you.
Rels

Kim - I have UC too and am awaiting surgery, probably two operations. It is a scary prospect, but I just keep reminding myself of the big advantages:

Control - after the surgery, I'll go to the bathroom when it is convenient for me. No more urgent dashes or accidents.

Get off the medications - Prednisone stopped working for me. I am on Imuran, Remicade, and Asacol, and will be happy to stop.

Feel better - Between the pain, loss of blood, and poor sleep, I feel lousy half the time. I want my "normal" to be normal again.

Reduce cancer risk - The risk of colon cancer gets very high for people who have had UC a long time.

Overall, I just want to stop thinking of myself as a sick person, and start leading a normal life again. for me and for my family.

There are risks and uncertainties. The surgeries and the healing process will be difficult. There will be issues with control. My diet may need adjustment. Some medications may be necessary. There will be residual cancer risk in the rectal cuff. But I have heard so many success stories that these are all minor compared to the vast improvement in quality of life that I can expect.

Good luck with your decision.

Kevin