Considering J-Pouch surgery

Hello, 

I have been lurking around the forum reading all the helpful information posted here for a while. Finally, got around to creating my profile and need some advice. I was diagnosed with in May, 2010 and have been in a constant flare since then. I can't remember being in remission or relatively symptom free for more than a week or ten days during this entire time. I have tried pretty much all the drugs and therapies out there...remicade, enemas, 6MP, Aza, prednisone, homeopathy, ayurveda, yoga, accupuncture. Currently, I am in a drug study for Vedoluzimab. Nothing really seems to help much..On a good day I go to the bathroom between 4-6 times a day with urgency and end up spending 30-40 mins on the throne. And, those visits are not pleasant at all. Usually, accompanied with cramps, blood and incontinence. Then, there are the bad days. Recently, the bad days seem to be outnumbering the good ones.

So, my question is do you believe my symptoms are bad enough to consider getting a j-pouch? I feel I am mentally prepared to get surgery but I wonder if I am hurrying into surgery. How bad were your symptoms before you decided to get surgery? And, do you feel life after a j-pouch is better? I hate the unpredictable nature of UC. It seems everytime I have plans, UC acts up and I need to cancel them. I look forward to hearing from all of you!!

I am one of them that has accidents all the time. I have towels on my car seat. I'm glad my car seat is leather, it's easy to clean. lol

Surgery is scary. You never know how you will end up. That's probably the thing that stops most people from pulling the trigger....

Thanks for the input, everyone!! I really appreciate it. On most days I feel I am ready for surgery. But, if I happen to be having a good day I start questioning my decision. I guess my expectations about what a normal day should be are so low since I got diagnosed with UC that I am easily satisfied if I only spend 3 hours in a day in the bathroom!!

I have a surgery consult scheduled for next Friday. I hope that will help me get more clarity!

Thank you all for your sharing your experiences! They really help me put my symptoms in perspective and make me realize that I am not being unreasonable by not being happy with my current quality of life! Sometimes I wondered if I am just expecting too much and I should be happy that my symptoms are not worse!!!



I have set up a consult with a surgeon for next Friday. Hopefully, that will help me get some more clarity and make a firm decision.

One thing to keep in mind is that your chances of a successful surgery free of complications are better when you are healthy, not when you are at your sickest. If you keep waiting until you are "sick enough", you could end up in an emergency situation which will leave you not healthy enough to heal the j-pouch, requiring an additional surgery just to get you healthy before they construct it.

Some of us think, "Am I really sick enough to have surgery?" But the thing with this disease is that it almost ALWAYS gets worse, not better, over time. From the sounds of it, you have tried everything and are to the point where you're pretty much out of options, like I was. It sounds like you WILL need surgery, it's just a matter of when, and you might as well get it over with when you are not too sick to recover.

When I first seriously considered surgery, I didn't think I was quite "sick enough" to undergo the knife... but as I waited for the paperwork to go through, tests to get run, and the surgery date to arrive, I just got sicker and sicker, as if my colon was answering that question: you don't think you're sick enough, eh? Well you are!!! By the time most of us undergo surgery, the surgeon almost always comes out saying, "Your colon was very sick - it's a very good thing you had it removed."

If I were you, in addition to cruising the forums, I'd do a bunch of research, look at the success rates, read blogs of people who have done it, and do NOT get all your information from online support groups (like jpouch.org) because those are the people who are suffering and looking for help. The success stories are out living their lives and not sitting around in online support groups. Check out my blog - it has a bunch of really helpful resources along the right-hand side of the screen, including a list of studies regarding success rates.

Good luck in your decision!

I know!!! I can't believe it's almost here! Keep the drum roll going.... Will be sure to keep you all posted.

Wohoo take-down countdown!

my quality of life at the moment is like 3.5/10

The only thing I'm able to do is go to work, crap my pants, eat, sleep, crap my pants and repeat.

Somedude, how long do you think you can keep going like that? You are taking advanced UC medication and it is not improving.
I also wanted to explain something about when you need 3 steps. They do 3 steps not necessarily because a person is really sick, but because they are still taking pred. Pred makes everything heal so slowly that they only want to do one action per operation. So step one is taking out the colon. Step two is forming the jpouch, and step three is take-down. The discussion among surgeons where I am is that they are seeing better long-term results in general in the patients with 3-step procedures. Two steps is obviously less hassle for you, but three steps does not mean anything bad, it could even be of benefit.
I really want to ask you why you want to hold up your life like this. I have UC too, and  one of the reasons I "opted" for surgery is that I realized it was never going to get better than where I was at the time. My doctor would have agreed to try different medications instead of surgery, but I also had a fibroid stricture growing in reaction to the inflammation and it was threatening to shut down at any moment, and then I'd have to have emergency surgery wherever I'd be brought by ambulance, possibly by a surgeon who had little or no experience doing collectomies. Or I could plan the surgery before my colon shut down and have the best surgeon in town. Those were my choices: excellent planned surgery or hectic, less optimal emergency surgery. Although it was considered "elective surgery", my surgeon did not believe I had any choice because the colon would certainly shut down quite soon (long before my very high chances of colon cancer would have a chance to manifest), and he (my surgeon) had quite a job getting me to accept that reality .

 I was not crapping my pants from the UC. I had some incontinence problems after take-down, simply because my muscles had been out of practise for 12 months. That was wildy upsetting so I can imagine the state of mind you are in if you go through that several times a day. You cannot go on like  that because it will become too much a part of your identity. Has a doctor offered you any perspective on that stopping on its own?
Try exploring your options neutrally. Have a surgeon take a look at your sphincter. If it is spazzing out because of UC then strengthen it with kegels. If the surgeon says it is otherwise ok and would function fine as long as the muscles are strenghtened, then you would do just fine with the jpouch.
I also get the feeling that you are under 30, still young enough that the healing and adapting goes much more quickly and easily than whe you are older.

Post Edited (B'Dereh) : 12/6/2012 9:22:38 AM (GMT-7)

OK well 32 is still young enough.
Your problem is that you are scared.
Our friends here who are having stoma problems are the ones who have permanent stomas.
Look, you are reading too much on this site, where there are mostly only problems. And I'll repeat what Sarah said, that everyone else is not on this site. (Except me, I am not really having any problems with my jpouch and I'm hanging around here because I don't have many people who know about my illness and surgery and the months with a stoma etc.)
What you are telling me is just your doctor's personality. He has seen a lot. And he told you: most people end up alright with a jpouch. I have also heard about somoene who is still going 10-20 times with a jpouch, but that is not very usual, just very unlucky.
I started out with 18-20 just after take-down. It went down gradually from there, to 16, then 15, then 13, then 11, etc., and I've been down to 5-7 times for about 3 months, which was 5 months after takedown. Maybe even before that. The lower my frequency, the easier my life is. It is much better. I do not have colitis flares, I have all of my energy. There is no blood in the toilet. The drawbacks I have and that I will always have are absolutely nothing in comparison with having colitis. Here are my drawbacks:
I have to take immodium every 4 hours but will ease up over the next months. There are no side-effects and my present GI said there is no literature saying there could be any.
I have to remember to take a heaping tablespoon of psyllium husk in yoghurt twice a day (this is really nothing to complain about).
It takes a bit longer to do the whole poo because the parastalsis is different than with a rectum but we already know that. So it takes longer, so what.
Often I have to get up in the middle of the night for a poo. Sometimes it happens an hour before I have to get up anyway and then I just don't get that last hour of sleep. I'll survive that.
I can't think of any other drawbacks at the moment.
And I have to disagree with you - the risk of having Rosemary's problems are very very low. Her case is the first time her doctors have ever seen anything like that.
And you are not going to have a stoma forever, just a few months.
I really think you should do things to get yourself into a better frame of mind. You simply cannot live at that level of fear and it is also not helping your colitis flares. And this going in your pants business must be holding you up from a lot of important things in life.
People are always telling me that I have a lot of courage even though I feel frightened often too, I just do things anyway because I see them in a bigger picture than just my fear. Think about your life, and what you want, and that you deserve what you want.

Hey, SomeDude just needs time to wrap his head around it, and that's okay. Right now he is mulling over the idea and doing his research, which is what he should be doing. What you all say is true, and living in fear is certainly not a good thing, but from what I remember he has not had UC for very long. I had it for seventeen years, knowing the whole time that surgery would be the final solution if things ever got really bad, and even for me it was a difficult decision to make. It's easy for us looking back and comparing life pre-surgery and post-surgery, but to him it's still a big unknown. He will come around eventually.... at some point we all just say, "Enough is enough!"

SomeDude- You still crack me up! It's not a funny situation, but just the way you word things always makes me chuckle.

Yeah but most of that time it was mild/moderate and easily controlled with mesalamine: oral for maintenance, rectals for flares. It wasn't until the last year and a half that things got really bad and I tried all the immunosuppressants that didn't work and eventually needed surgery.

UC Warrior--
My husband had UC go through him in about 18 months and then he had surgery. He went through the usual meds (pills would just come out whole), ending with one or two remicade infusions before we found ourselves in the hospital with blood transfusions. His disease progression was so quick. Sometimes the UC days seem so long ago. He's got a temp ileo right now and has had it for about 3 yrs. It's time to move on though, and a hernia fix and jpouch will likely be underway early 2013.

I guess my point is that though he didn't suffer through UC for many years, the time that he did have it was also a constant flare like you mentioned. He never was symptom free; never truly in remission, and like you, the bad days started to out-number the good--at an alarming rate.

His surgery came with some issues, but like Amythyst said about her husband, he is UC free. My hubby knew what he was going to have with UC--in his case, not much hope for any future. With surgery, there is hope.