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My Experience With J-Pouch Surgery

Having Surgery, and Looking Towards the Future

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Updated January 27, 2014

The First Step

To prepare myself for the temporary ileostomy, I read everything I could get my hands on about the procedure. I met with an ET nurse, and she explained more about how to care for my ileostomy. She checked out my abdomen, we decided where the stoma should be based on my clothing and lifestyle, and she marked it on my belly with indelible ink. She gave me a sample ostomy set-up, so I would be familiar with it. When I got home I stuck it on my abdomen over my "stoma", to see how it would feel. I almost didn't notice it.

The first surgery was a complete colectomy and creation of the j-pouch and a temporary ileostomy. I spent 5 days in the hospital, and came home with a bag full of medications including painkillers, antibiotics, and the evil prednisone. I had a visiting nurse come to my home to help me change my appliance. So, the first three times I changed it I had help. The third time I did it myself and the nurse supervised. I must have done a good job, because I never had a leak the entire three months I had my ileostomy.

It was easier for me to accept the bag because I knew it was only temporary. I found it to actually be more interesting than scary or gross (after 10 years with ulcerative colitis, there is very little that can disgust me). The best part about the bag was freedom from the restroom! I could go to the mall and not worry that the nearest bathroom was two floors down, and I could go to a movie and not have to get up in the middle. My mother took me to get a manicure for the first time in my life, and I didn't have to worry about my UC giving me trouble. It was amazing, and if I had to have a bag, that was a small price for me to pay.

The Second Step

Even though I was now enjoying life, I still wanted to continue to the next step and get my j-pouch attached. My experience with the ileostomy showed me that it was not depressing and horrible, and I could have a good life if I had to go back to an ileostomy some day.

I was very scared laying on the gurney, waiting for them to take me into surgery. I felt fine, and to subject myself to more pain started to seem silly. My surgery was delayed for a few hours because of an emergency. Thankfully, I was so worn out from the stress I finally fell asleep, and the next thing I knew they were wheeling me into surgery. The nurses were wonderful, and made jokes so I wouldn't be so frightened.

When I woke up I had another wonderful nurse in recovery who got my pain under control right away, and I was sent up to my room. As soon as I was cognisant enough, the first thing I did was to feel my abdomen and check to make sure the bag was gone!

I was in considerably less pain than after the first step. It took my bowel two days to wake up. It was a horrible time, I couldn't have anything to eat, and I kept heading into the bathroom and trying to move my bowels, but nothing would come out. I started to become bloated, and very depressed and anxious. Finally, after what to me seemed like forever, I was able to move my bowels! Before he left that night my husband made sure I got a tray of clear liquids, and the next morning I got solid food. That afternoon I went home.

The Present and the Future

Now, over a year later, my j-pouch and I are doing great. I can eat just about anything I want (within reason), and I almost never have diarrhea. I empty my pouch about 4-6 times a day, or whenever I'm in the restroom to urinate (with my small bladder that's about every two hours). If I eat something spicy I might experience some burning when I use the restroom, but it's nothing like the hemorrhoids and burning I had with the UC.

At times I do have what is called 'explosive' movements, but that's no different than when I had UC. In fact, it's less of a problem now because I can control it, and it's not painful. I haven't had to make a mad dash to the restroom since before my first surgery.

In the future I hope to continue doing things I feared I never would. It's been a long time coming, but I think it's finally my turn to have some happiness, and freedom from restrooms.

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