I have UC. . Surgeons say Surgery is likely. . I don't want a permanent bag. .

If a cure was found next year, I would not regret my surgery. Sure, I have hard days now and then and healing was not easy. But in the grand scheme of things, it only took 4 months to heal and get used to the pouch. That amount of time seems like a blink of an eye now that I am feeling amazing. Like Suebear, I had very bad, painful bloating with my UC. It often looked like I was pregnant because my belly was so swollen. I am not exaggerating when I say that my clothing actually fits better with my ostomy pouch than it did with all that bloat. I also had crampy pain all the time. It is such a relief to not feel that anymore. Not to mention no more urgency issues. Moreover, the increase in my energy level is unbelievable. I have heard that one does not fully heal from surgery for about a year, yet I am out doing active things 9 months post-op and feeling more energetic than I have in the past 6 years with UC. I could never regret something that has improved my life so much. I am so used to the pouch now that it seems like it is just part of me and managing it is just one more routine in my life like brushing my teeth, getting dressed in the morning etc. I hardly even think about it. One could also ask, what would happen if you spent the rest of your life sitting around ill and miserable just waiting for a cure? No thanks. I chose to try for a better life through surgery and the results have been everything I had hoped for.

Hoshi- I wanted a permanent ileostomy after doing lots of research. Yes, the GI doctors I was working with acted like it was an expectation to get a j-pouch. They had a hard time understanding why I wouldn't want to go that route. The j-pouch is a great option and one that a lot of people are very happy with. It is just not the choice I wanted. After hearing some of the statistics, I felt that the permanent ileostomy had the most predictable results. I wanted to get rid of my UC, learn to live with the appliance and move on with living my life. I did not have the aversion to having an appliance that some people seem to have and didn't care much about going to bathroom the regular way again. For me, it was all about the surgery choice that I personally felt would best allow me to return to my dream career quickly and successfully, and the one that I felt would allow me to still take part in the outdoor hobbies that I am very passionate about. The decision is deeply personal and one that is based solely on your values and what you want for yourself. It is very hard to justify to someone else. I was so worried before my surgical consultation that my surgeon would try to pressure me into a j-pouch, as he is a top colorectal surgeon in the area who is good at doing them. I was so relieved when he put no pressure on me at all and said he would do whatever surgery I wanted. He never made one surgery type sound like failure. He just gave me all the pros and cons of each operation and let me decide. When I told him my goals and what I wanted in life though, he said a permanent ileostomy was a fine choice and that I would still be able to do everything I loved with it.

I chose a perm ileo, I wanted it over! I never wanted to use the bathroom again! I didn't want the risk of failure or pouchitis, which is very low but not worth it to me. A big decicder for me was the 2nd surgery I had a 2 year old at the time and already had to spend too much time away frm him for the first surgery I didn't want to do it again. Noone has ever seen my bag, or known that it was there, unless I told them. I told a friend and she actually didn't belive me she wanted to see it, lol. When she saaw it she was jealous! She said so when I have to run to the bathroom or sti there you never have to do that? I said nopen. She said you suck! Meaning she wished he never had to do those things. My clothes are the same as usual, todsy I wore a jean skirt (size 8 thank you vry much) and two tight tank tops, noone noticed, in fact I got the nickname hottie lol. so see it won't impact yor life at all, except for making it better!
If you are thinking of surgery mak a list of all the things uc kept you from doing this week, then post it and we can tell you if it stopped us. My typing iis awful, I'm using my phone cause I'm hanging out at the pool hall waiting on a friend.
Good luck with your decision

   I haven't had the takedown procedure yet, but I can tell you the scars from the first surgery are not that big of a deal.  I have about a 3 inch vertical scar below my bellybutton that is mosty covered by my jeans.  I also have 3 little scars (about 3/4") on my waist area.  Two for the surgery and one for the drainage tube after surgery.  I suspect I will have an additional scar after the takedown procedure, but I don't know how big it will be.