J-Pouch Oct. 21st :(

I think you will wish you hadn't put a sad face in your title.

I had surgery at the same age, with the same years of disease, for the same reasons. Step 2 was July 1. Last weekend I went to New Orleans, where I took a cab ride across the city to work on a Habitat house, presented a paper at a conference, went out for dinner, and walked around the French Quarter for hours and hours without needing a bathroom any more often or more urgently than a normal person. I could not do any of that with the disease. It's not perfect, but if I had really understood how much it would improve my life, I would have done it about ten years ago.

And if that doesn't get you, remember that you're doing it to save your life, not just improve it. No regrets on that one!

Are there specific things you're afraid of?

I think you're totally right about how well-adapted you are to being sick. I definitely was. If you can be at all excited about this, you should get excited about having a big area of your mental attention (the area that used to be occupied locating bathrooms) freed up for other things! That was true for me right away, even with the ostomy, so look forward to it soon!

I bet you'll do great with the ostomy. I tried to take the attitude that it was just another part of my body, that I needed to be responsible for it and take good care of it, but that I also needed to cut myself some slack--I didn't know how to wipe my butt when I was born, and it takes a while to know what the ostomy needs too. It also helped to to think of the output not as s#$%, but as wound drainage--somehow it helped me to acknowledge how unusual it was without feeling the stigma of having s#$% in weird places. It is a little shocking to see intestine coming out of your abdomen, but I really think that's evolutionary--we are built to be alarmed by seeing gut outside of our bodies. I'd have a glass of wine before I did a barrier change. On really good days I felt like the ostomy showed that I was tough and a strong fighter, and that made me feel better about myself and what I had been through.

Waking up after surgery will probably be less traumatic than you think. I remember being pleased to be alive; I didn't even think to look at the ostomy until the nurse first came in to take care of it the next day. I was not in pain (and never really got into pain later--did not use the pain pump or take any painkillers--my surgery was laparoscopic), but did feel a little anxious at first, and some nausea later. I told the surgeon ahead of time that I needed an order for anxiety meds; then I could just ask for them and not have to wait for the doctor to be called.

I know it's scary. But on the other side of it, I also know that many of my fears were not realized, and that even the ones that were weren't as bad as I thought they might be. When I read on the UC board now I am just overwhelmed with sadness for people who continue to suffer symptoms of this disease and wait for "a cure" when there is a cure available right now. As a culture, we are way too attached to the idea of s#$%ing through our rectums. People (including me, in the past) will tolerate such unbelievable limitations on their lives in order to keep doing it. I hope that if things go awry with my j-pouch, I will be able to remember that--I don't want to spend any more time in my life looking for bathrooms.

Hang in there, post again if you've got more questions, and definitely drop a line when you get out.

PS One major thing for me--they sent me home with clear ostomy bags. Maybe someone out there wants to look at her s#$% all day, but it isn't me. My mindset improved dramatically when I got the opaque bags--if I had it to do again, I'd make sure I got some from the hospital and switched over right away.

Charlotte Gilman said...
PS One major thing for me--they sent me home with clear ostomy bags. Maybe someone out there wants to look at her s#$% all day, but it isn't me. My mindset improved dramatically when I got the opaque bags--if I had it to do again, I'd make sure I got some from the hospital and switched over right away.

I was sent home with the clear ones too, but I actually like them. It helps me figure out how foods affect my output. Once I get reconnected I want to be able to already know which foods to eat to make my stool more solid. Granted you can see it when you empty the bag too, but I also like being able to see it in the bag because liquid tends to splash more when it comes out...

Best of luck to you --- I've had a permanent ileostomy since 1984 - no regrets! I can do about anything I want. You will too once you recover. Keep a positive attitude. Good suggestion about having anxiety meds on your charts so you can take them as needed. Sometimes they help better than the pain drugs anyway, & less nausea. Please let us know if you have more questions. I think you've gotten some really good responses.

I had my colon removed on September 27, after spending pretty much a whole month in the hospital. I was scheduled for surgery on a Tuesday, and the Friday before the surgeon came in my room and told me he had an opening, did I want to do the surgery that day? I did, and it was a good thing, since by the time they started, I was perforated.

One thing I would ask for is a nerve block. I wasn't able to get a nerve block until after my surgery because I had a heparin shot the morning of my surgery. I think I would have had less pain right after if I had been able to get the nerve block before the surgery as opposed to the morning after. Once I got it, it really helped to control the pain.

I have done more in the two and a half weeks post op than I think I have done in the past year. It is definitely worth it. For me the ostomy wasn't that hard to adjust to but I haven't decided if I want to reverse it yet or not, but I've got plenty of time to decide. Good luck!

I would be more than happy to talk to him. I was wondering if anyone was prescribed medication to calm them down the morning of the surgery. I really want to go to the hospital in a relaxed mood. Thank you all for being here for me :))))))))))))

Thats when they remove the illeostomy to allow your small intestines to function normally. No more bag, you use the bathroom normally