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Reply to "J-Pouch vs Permanent Ileostomy"

I had the three step in 2004 at 42 years old. I had been very sick for about 7 months, had been on lots of steroids and was overweight. Go figure, sick as a dog and still overweight. Such is life. Anyway, all those meant I had open surgery and three step. After step one, I woke up feeling fantastic. That colon had been really making me miserable and having it gone made such a difference. Two months later, I had step 2. That was rough because I got an internal abscess, insurance insisted I go on a month long regimen of this $800.00 a day IV antibiotic and I was very sick for that time. The day my insurance okayed the surgery to drain the abscess, my surgeon called and scheduled for the next day. Things were rough from then on. I had been very, very sick. All I could do was lie in my recliner and look out the window.  I think the only reason I did not get blood clots is my dog refused to leave my side and I had to take him out to go potty. I remember standing waiting for him to go and thinking, "I could just lay down right here and sleep." I had takedown a month later. 

My surgeon would not write a note for work after 8 weeks post takedown, so I went back teaching when school started. He was an awesome doc, but I still think he should have written the note. I was so weak, so exhausted and kids just take it all out of you. They don't understand and they should not have to. I remember falling asleep at stop lights on my way home from work. Very scary. Now I know I should have napped at work before driving home, but hindsight..... It took a year to recover fully.

After all that, I have no doubt I would do it again and apparently I might have to as I have active UC in my retained rectal cuff. I have had pouchitis since about a month post takedown, but that has been well managed by antibiotics - thankfully. I am now on Humira and may be switching soon to something else as the UC is flaring again. I am allergic to Canasa, so that is no longer an option.

This all sounds horrid, but really, life has been good. UC hit me hard and fast and it was no way to live. I remember screaming on the toilet because things hurt so badly. Since I recovered from all the surgeries, I have worked full time, traveled whenever I could and felt pretty normal. I have had a few blockages, but they have resolved themselves. I have never leaked and can hold it for hours, even now with my cuff giving me issues.  I can eat almost anything I want. Until recently, the pouch has not stopped me from doing anything I want to do. 

Use the best surgeon you can find, get a bidet and put on your patience hat. It will be hard, but most of us come through it just fine. This site saved me. The people know so much and are always willing to help. Because I read almost all the archives before surgery, I was prepared and knew what to expect. 

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