J-Pouch Surgery Opinions Needed

I called my surgeon’s assistant nurse today and talked her into giving me a tentative date for my third surgery (June 25th). While talking about reasons this last one may need to be pushed back, she asked if the surgeon had brought up the possibility of combining the second and third stages.

At my one-month post-op appointment in the fall the surgeon did bring up the possibility of having only one more surgery. Rather than creating the j-pouch in one surgery—and continuing to have an ileostomy while it heals for three months—my system would immediately begin to use said pouch. The recovery/adjustment time is prolonged, the pain more widespread, and risk of complication higher. On the other hand, it eliminates the need for another surgery, reduces my total recovery time, and allows me to be completely healed by summer. If I have the third surgery in June I will only be in the hospital for a couple days, but will be going to the bathroom up to 10 times a day for the first 4-6 weeks. While there won’t be the extreme urgency I used to feel, I still won’t be able to stray too far from a bathroom.

Part of me would rather get this done and over with so I can enjoy the summer without interruption. I trust the surgeon’s call if he thinks it’s safe. The other part of me would rather take it slow and make sure there is as little complication as possible. This is my body I am talking about and I have to live with it for another seventy years (hopefully).

So what would you do if you were me?

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James
26-year-old diagnosed with UC in 2004
Underwent stage one of J-Pouch surgery on September 16, 2008
Stage two scheduled for March 19, 2009
Now living symptom-free thanks to the Cleveland Clinic

James--Have you been to jpouch.org?  I know there will be a someone along soon who's been in your shoes, but that site might be able to answer your questions, too.  I don't have any first hand knowledge of j-pouches, sorry

Were you on steroids before your first surgery?  Sometimes the drugs we have to take before surgery can delay healing...will you be talking to your doc soon to get his take?

Good point about jpouch.org. I'll post the question over there as well.

I was on steroids for almost 2 years before the surgery (plus Asacol, Imuran, and Remicade). That was the reason behind having to wait 6 months between the first and second stages. When I first began this process, the surgeon said it was going to take three stages of surgery; I'm not sure why he changed his mind. Regardless of that, yes I will be seeing him in two weeks at my pre-op appointment.

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James
26-year-old diagnosed with UC in 2004
Underwent stage one of J-Pouch surgery on September 16, 2008
Stage two scheduled for March 19, 2009
Now living symptom-free thanks to the Cleveland Clinic

You're right, it will be your surgeon's call. Many have gone in for what they thought would be a 3-step only to recover their health and have steps 2/3 combined. I was on pred for over 2 years, had the traditional 2 step with an 8 week wait between surgeries and I am fine, 8 years later.

Sue

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dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free

If I am to understand correctly, your stage 1 was to remove your colon and create a temporary ostomy. Stage 2 would be to create the j-pouch (then let it heal) and stage 3 would be to reconnect. You may have the choice to have the j-pouch created and reconnected at the same time?

This is definitely a decision to make with your surgeon however, my opinion is to keep to a 3-step. I think there is less chance for problems (leaks, etc) if the j-pouch is allowed to heal without having to begin working immediately. I know that often step 1 and step 2 are combined (that was my daughter's case). I haven't heard too often combining steps 2 and 3.

My daughter had her colon removed and the j-pouch created in July 2008. She had the ostomy removed and the j-pouch connected in November. She had a very quick recovery for the second surgery. She was back at school (and her activities) within 3 weeks. She had a little less than 2 weeks after surgery that her body had to adjust to its new "plumbing". She is not chained to a bathroom, does not have to search out a bathroom immediately upon entering a building, and can hold her "need" for quite awhile.

I would think that your recovery time for your 3rd surgery will be much shorter than the other two. Barring any complications, your summer should be great.

There really is no reason to wait unless your surgeon sees fit that it's in your best interest. People have successfully surgeries whether it's a 1, 2 or 3 step. Patient health and meds play a role in the decision but don't think because you have your surgeries sooner rather than later that your's will be a failure. My surgeon, one of the top in the country, waits 6 weeks between surgeries for most patients. Again, the other factors help to determine that.

Sue

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dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free

draegs,

Not sure if you post here anymore. Was curious how you're doing since it's been a while of having your j-pouch. Would love to know. Hope life is treating you well.

Hey I had step one colon removal. My surgeon said she would do 2 and 3 in one step if things looked good on 9/7. I'm all for it! I'd rather get it over with than go through another surgery and have the bag another few months. That is however a personal choice! I don't think the surgeon would do it unless they were confident it will be successful.

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DX 2/10 UP. DX 07/10 UC. Pancolitis. tried: Canasa, Asacol, Bentyl, Imodium, Imuran, Prednisone, Flagyl, Cipro, Remicade, Codeine, Tramadol, Xanax, Morphine, Vicodin, Prozac, ~ nothing worked. 1st surgery 6/8/11! 2 more to go!

I had 1st surgery 5-26-11. It was steps 1n2 together. Going this mnth to start the process for the last prt to reconnect my sml intestine to my j pouch. A lil nervous cuz I'm feeling so good n not on any Meds!! Kinda got used to my ILEO but hope n pray I dnt need it again!! I have lots of questions for post j pouch surgery!!

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Diagnosed w/UC 4-7-09. pan colitis. No Meds worked,Been hospitalized 4xs n 5 mnths. Gastritis also. had proctocolectomy/with ileostomy on 5-26-11 Went well despite code blue! But dying has it's upside for the fact that I was at the gates of HEAVEN WITH THE LORD! Healing now. Ostomy is gonna take sum getting used to! Nxt surgery n Sept.Now I have Sciatica! Pain n the butt literally! God is Good!