Hi to all,
First thank you all for your replying my post. To answer all the questions see below:
Problem of fistula and abscess started about 9 months ago. Things that have been tried:
About 13x surgery. Seton wire, mushroom drains, cleaning the abscess and making the drainage opening bigger etc and etc.
Numerous antibiotics treatments.
Azathioperine
Remicade
Right now a am beeing treated in Belgium for the last 5 months. in Holland after alot of surgery and etc they wanted to remove my anus and bowel and place a stoma. so i went to a hospital in belgium. This is my second opinion. The dokters there have tryed: increasing the dose of remicade, aza, antibiotics. Also instead of the (horrible and huge) mushroom drains they work with a bandage that they insert into the abscess and fistula tract. Unfortunelly it doesnt work. So the plan is to place a temporery stoma so they can open up the fistula tract wide and big and place vacuum bandages in the deep tract. Afcouse there is no garanties that this will help. If it doesnt ill be stuck with the stoma for life.
Right now my choice is either to live with this pain or to try the big surgery. I am wroting a letter to the Mayo Clinic, anyone know about that hospital?
About me consodering suicide, i have spoken with two psychologists. I dont have a depression, this is what they tell me, ijust dont want to live handicapped. This is no life, a stoma for me would also be no life. Too much to get used too. I am suffering wit crohns disease for 18 years now, still sucks..! Afcouse you all also know im not the only one here.
Im very curious about treatments in the mayo clinic or about dr william sandborn. Maybe even clinical trials?
I'm not sure why you're on Remicade because there is a lot of concern that Remicade is seen to halt healing of abscesses so doctor's tend to hold off on prescribing Remicade until the abscess is healed. (See xX_LittleMissValentine_Xx) Also, having a stoma will only hold you back as much as you let it. My little brother has a stoma after almost losing his life and now he is medication free, and living a 100% normal life. He has no pain, no limitations, etc. The only change he has is that he has to take a few minutes out of his day once and awhile to change his "bag" in his room. Very few people know he has it, and those who do are completely supportive because the stoma gave him his life back.
Think about it this way, would you be happier with a friend who is sick and in and out of the hospital every week or a friend who has an unnoticeable stoma and lives a normal life and can do anything a normal person can do? Or let's look at rygon on here. He has a stoma and been skydiving over 100 times now I believe. A lot of "normal" people don't go sky diving and here he is fulfilling his goals and not letting this surgery hold him back. You sure as hell couldn't do activities like that when you're sick and in so much pain. Or let's look at Misty-Eyed, I think she spends more time in a bathing suit than she does in normal clothes! lol (just kidding, but seriously) There are many people who still go to the beach, play sports, etc.
I was in the same position as you before and thought I'd rather die that live with something as "awful and embarrassing" as a stoma but after living with crohn's for my whole life, if I was really sick and didn't have much of a life, I would much rather a minor setback than continue to live with a low quality of life.
Stomas have given many people on this forum their lives back. If you have a look at the stoma subsection on here, there are so many strong, independent men and women who live their lives to the fullest and are so thankful to be able to live a full life again. Some of the happiest/healthiest members on this forum are the ones who have had stoma surgery and are no longer in pain.
Put it this way, would you turn your back on your family or even your friends if they were in the ones who had a stoma? Probably not. Your true friends will support you and be there for you and those who don't aren't really your friends at all. Hang in there buddy, I'm here for you.