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8 replies

Upcoming 3 step J-Pouch Surgery on July 7 and freaking out a lot!

K KRF2523Member
I am 22 and have had UC now for 9 years. Since January of this year I have not found medication that has worked. I was on Simponi for about 2 months and in January I had an awful flare. From then on I've gone from medication to medication and keep having to go on prednisone. For the first time these flares caused me to have accidents to the point where I was afraid to leave the house. If I did leave the house I brought with a bag everywhere I went with wipes, towels, new pants and underwear. It was awful. Then in May I had to go to the hospital due to arthritis pain-I couldn't even walk. My GI said at the rate I was going through medications and having to continually going on prednisone it was time to consult with a surgeon about the J-Pouch surgery.
The surgeon I'm going with does the J-Pouch surgery in 3 steps because from his experience there are less complications and it lets you heal better. So the first step is to remove my colon and create an end ileostomy. The second step is to remove the rectum, create a loop ileostomy and the creation of the j-pouch. The third and final surgery would be laparoscopic and the j-pouch would be attached and begin to function. He leaves 3 months in between each surgery.
I am petrified. I've made pros and cons lists over and over again and the pros always win. I get it, it's better to do the surgery now when my UC is sort of stabilized and it's not emergency. No more medications for UC for the rest of my life, no food restrictions (I understand there still may be some), no more unexpected flares. I could have a "normal" life! (I say "normal" because I'll never be like a person with a healthy colon haha)
I guess what I'm looking for is some encouragement that life is better after surgery. That going through surgery was worth it-going through the pain and hospital stays was worth it. The thing is I'm 22, I haven't had children yet and this is just scary at this age. So please, send me some encouragement stories. Thank you in advance for you help!
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Jan DollarJan DollarModerator, RN, retired
I am happy you have made a decision and it seems absolutely warranted for your situation.

But, I also want to be sure that you don't expect too much from this surgery. It is not all unicorns and rainbows, and there are no guarantees.

In particular, I worry about confidence in no medications for life. Don't get hung up on that, or you can set yourself up for disappointment. Many of us, myself included, still need medications. If not for pouchitis or other pouch related disease, then for things like IBD related arthritis or other autoimmune disorders. I still take Azulfidine and Simponi, among other medications.

The only guarantee is that your diseased colon and rectum will be gone. You still will have the same genetic defects going on. You could be lucky and achieve all your hopes and dreams, but it is better to expect some bumps in the road, and be happily surprised if they don't occur.

I am one who had many complications, but still feel my j-pouch was a wonderful choice for me.

Jan Smiler
S ShainyMember
I had an uncontrollable flare of uc in December 2013 and had the first stage of 3 then.

My experience was a tough first week but by the end of the second week I was up and about and things just moved on from there. I got super fit again, ate everything, my end ileostomy never had any issues. I was almost tempted to leave it like this and not go for j pouch.

Anyway 5 weeks ago on may 12th I went for stage 2. Removal of rectum, creation of j pouch and loop ileostomy. This op has been a lot tougher for me, I have had set backs but I am on then mend now. It's too early to say if the pouch is a success or not but I'm feeling positive....
K KRF2523Member
Jan,

Thank you for your support! I understand that I will still be on medication. I just recently was diagnosed with arthritis as well. I just meant no meds specifically for my diseased colon. That is a major plus for me because it'll at least be less medications.

Shainy,

I'm glad that after your first surgery you felt so good. I'll keep you in my prayers that you heal nicely from this surgery as well.
D DogMember
Back in 2008/2009, I had a 3-step procedure. My situation was a little different than yours though, as I was in the hospital for a month with my first flare and was told I either get my colon removed or die. Fun stuff.

Anyway, my colon was removed lapro. I felt better almost immediately. The day following the surgery, I was sitting in a chair. My surgeon about jumped for joy.

The second step was done a few months later. The second step, where they rearrange your plumbing is a "major" surgery. If you, like me, doesn't know what that is, you will. Smiler

Third step, removal of the ostomy, is a breeze. Letting the ostomy site heal is strange. I took a photo every day so I have a time-lapse video of the healing process.

Things to know. . .I'm 5 years post surgery and I feel great. I have no leaks, full control (I can delay going to the bathroom if I want for hours), and I eat anything I want, anytime I want.

Keep j-pouch.org handy after your surgeries and before. . .lots of people with lots of great advice. . .like this one. . .if you don't have a shower wand (shower head that is on a long tube), get one. Trust me. Smiler
T techwrenchMember
KRF2523, I don't know how you made it 9 years ! You are tough. Three and a half years was all I could take.You have arrived at that cross road knowing what you need to do next.It is your decision,and it's scary at any age (I was 32).
I must confess,when I made the decision to have the surgery,and was laying there in the preop being prepe'd,I had a mini melt down. I still wondered if maybe there was something I should have done,if surgery was the right answer.The peristomal nurse preping my soon to be stoma site said,"you are making the right decision,none of the medicine worked for you,and if you would have waited longer,your rectum could have been too diseased for the ileal pouch option".
After the surgery,I wondered why did I wait so long ? Immediately felt better,and even with the bag,my dignity and ability to travel was greatly improved.Like Jan said, this is a systemic disease,and a colectomy only eliminates of the symptom. Most of us continue to have ongoing autoimmune issues.
Is the 3 step a reletively new procedure ?
K KRF2523Member
I don't know if it's new but it's not commonly done. My surgeon only does the three step because he feels like there are less complications with it. With patients being unable to be fully healthy for surgery he likes to give the body time to heal. Thank you for your response! It was a little funny when I counted the years because even I said Really it's been that long? haha I know before the surgery I'm going to back out about 30 more times. But at the end of the day I can't deny the pros to this surgery.
LewLewMember
KRF2325
I had a 3 step procedure but I left 1 year between each step. It was my decision as I wanted to be sure I was well healed after each step. My surgeon generally left 3 months between steps but was very supportive of my decision. I had been suffering for 9 years with colitis and nothing was working at the last. My GI was afraid I wasn't going to make it to surgery as I insisted on waiting for a particular surgeon. I almost didn't make it as I got bacterial pneumonia 2 weeks before my scheduled Step 1 which delayed the surgery by a month. All this to say 5 years after Step 3 I eat what I want, have pretty good control and live a relatively normal life. For me it has been a great decision in a tough situation and while it is not perfect it's a long way from where I was before surgery!
Something to remember is while you can eat what you want after the surgeries some things come at a price. If I eat too much cheese I pay for it for a day or two.

Best of luck.

Lew
LambiepieLambiepieMember
I had a three step, too, exactly the way you explained it in your post. It makes a lot of sense, especially after being sick with UC and on many meds. There is immediate relief after the first procedure, once your diseased colon is out. Surgery number two is the most difficult with a longer healing time. Takedown is the easiest procedure. Like Jan said, it can take some effort to keep a pouch functioning well, possibly with meds and all. Having said that, you won't feel sick, as you most likely did with UC, and that is a blessing. I know at your young age this is a lot to take in. Just take it one step at a time and use this site for feedback. Chances are, whatever you experience, there's someone on here who went through the same thing.

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