I had/have ulcerative colitis for 10 years now. Six years ago, after being on lots of prednisone and trying 6mp (which almost killed me), I consulted with several CR specialists in Los Angeles and San Diego, CA who advised j-pouch surgery. I had a difficult time after phase 1 and phase 2 surgeries, picc lines and home health nursing; at home IV and nutritional food (just terrible) and depression for an extended period of time. I fought my insurance company for a nutritionist (they wanted to give me a dietician) and she worked with my CR, primary and gastroenterologist doctors to get me on a routine that eventually really helped alot. I still take all these supplements and only one antibiotic, cipro every day.
At the 6 month mark my CR asked me if I was glad I had the surgery. I told her, No - had I known what I would go through I don't think I would have done it. Her response was that nobody knows how anyone is going to come through the surgery; that oftentimes the surgery is the only thing that is the life saver (it was mine) and the steroids while helping really do slowdown the healing process and mess up the body's ability for tissue to heal quickly or correctly for a long time.
I developed a very painful rectal fistula. My CR decided to try the string method to close the fistula - that was a strange experience (a string is attached and you sit in hot baths post-op after a certain period of time - then slightly "tug" at the string little by little until the string comes out. Note: the "tug" hurts like hell - imagine pulling your insides out through your rectum). At a month's time, the string still was not out and the CR said if it didn't come out by itself in a week or so, she would have to go back in and remove it. I worked at it (literally) and right before surgery was scheduled, it came out!
I continued to see my CR regularly for quite awhile to monitor the healing process. I complained of pain and after testing found out I developed ovarian entrapment syndrome. Rare in j-pouch patients, but I got it. So my CR and 2 other doctors attempted to do a hysterectomy but couldn't as my pouch made a home and was happily adhered to my uterus. Instead an oopherectomy was performed and they (unfortunately) left a small piece of one of my ovaries which they said they devascularized and told me I should have no problems. In the process, my pouch was torn and repaired by my CR who saved me from having to have another pouch made (the gynelcological surgeon wanted to take the pouch and the uterus but my CR doctor said NO-thank God). This was a big surgery, involving three specialties, CR, Gynecology and Plastic. Phase 1 and 2 and this surgery each were in excess of 7 hours - difficult to say the least. about 8 months post oopherectomy, the hemorraghing started. Intraventional radiology was consulted and referrals to a different gynecologist specializing in surgery for this type of patient/issue were made. All the doctors involved decided rather than jeopardize the pouch failing from surgery, lupron would be the best option. It took over a year and 3 lupron injections but it cured the hemorraghing.
Then the abdominal pain came at the incision (open surgery not laproscopic) and a new plastic surgeon was consulted. He felt confident he could excise the adhesions and get rid of the pain so another surgery was done. That surgery was successful -the scar isn't beatiful but the pain is gone. I don't have a scar from my ostomy site as they removed it when doing the plastic surgery. That was, I think the best surgery - as it alleviated the abdominal constant pain I was living with day to day.
Now, 2 years later I just returned to the my gynecologist complaining of strange symptoms, thinking it was her field of expertise. I had already seen my primary and gastroenterologist and they didn't know what the problem was. . . My gynecologist told me I have a rectovaginal fistula - and asked me "didn't you have that rapaired some time ago?" Apparently not. Now it's causing major problems and I'm a little concerned about the surgical aspect of repairing it in j-pouch patients. I'm currently waiting for a referral to go through so I can return to my CR - I know they'll put the referral through; however, when it gets to this point it always ends up being a surgical repair.
My CR doctor explained to me in the very beginning of this journey that even though they removed my colon and gave me a j-pouch, I still have UC and it will continue to give my body other problems. When she told me she would be in my life from there on out, I thought it meant until I was through all this initial mess - I never thought it would be over and over again - surgery after surgery.
I am steroid free since 2007 -it took a year after post op phase 2 surgery and switching from prednisone to Dextamethasone (sp?) to get there but it was well worth it. Each surgery I have I refuse to let them give me any steroids on my CR doctors orders. My life finally got better about 2 years after I started the j-pouch surgeries. I know this is, in part, to my nutritionist and the supplements I take as my bone density scans are stable for the 4 plus years and my blood levels are steadily moving up higher in the normal numbers. I am not anemic anymore. So yeah, I'm thankful I had the surgery . . .
I've researched surgical procedures for the fistula repair and it's confusing. I'm hoping my j-pouch will be okay during the repair but more than anything, I would like to know the recovery time. Everyone is different but I need to know how to schedule my life. I don't want to be off work for a month - can't afford that setback . . .
Has anyone had the surgery lately and can they give me an idea of recovery time?
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Post Edited (TRAUBLE) : 2/17/2012 12:32:23 AM (GMT-7)