Living with an Ileostomy: Seeking Advice on Colostomy

I've had an ileostomy for about 3 yrs. Unfortunately it has changed my life soo much that I hardly even go out unless it's for appts. When I had my first surgery done I ended up with a fistula which the doctor fixed. I have a hernia and another fistula. I saw my doctor about the hernia about 2 months ago and he will not fix the hernia unless I get a colostomy which of course I said no and was very disappointed about the visit. Well now after going to th ER because I had such pain in my abdomen and severe liquid coming out of me they discovered another fistula so anyway I see the doctor next week so I can hopefully get this fixed. I feel fine and haven't had any problems yet. I just would really appreciate some comments on what it's like to have a colostomy and what you have to go through etc etc  because I know my doctor is going to mention me getting the colostomy .

 

Hi Leslie;  Please type my name in search to get to my profile page and scroll down and read some of my topic replies that are pertinent to what you are asking. In short, I'm not a fan. But everyone is different in their experiences.

I know ileostomoy is different than colostomy - but I'm a bit confused how you even have large intestine left for the doctor to be considering a colostomy?  From everything I've read, the reason you have to have an ileo is because they have to take the large intestine because it's too damaged????  

Whatever ends up happening, I hope it helps rather than make things worse for you.

Hi Leslie,

I read your post, and like Zywie, I'm confused.  An ileostomy is when they bring the end of the small intestine  ( the ileum) out onto the abdominal wall, and is done when the large intestine is too damaged, and had to be removed, or when the doctor's want to by pass the large intestine ( colon). 

Most of the time, when the doctors perform an ileostomy, it's because the colon needs to come out, and when the rectum is removed the surgery is considered "permanent".   Before you agree to anything, ask your doctors to explain what parts you still have/ and what needs to be removed to solve the problem.  As in where are the fistulas.... 

 

Marsha

 

Hi Leslie,

After 20 years of distal Crohns, I had a loop ileostomy, hoping that resting the colon would allow it to heal. No such luck, I continued with painful, bloody discharge and infected fistulas. Less than a year later I had the proctocolectomy - removal of the colon and the anus. After a difficult recovery, my life has completely turned around. I'm healthier and happier than I've been for many years. No colon for me = no pain, no constant leaking, no immune modulating meds, no side effects from meds, no urgent rushing to the toilet, no blood loss causing anemia, no antibiotics - I could go on and on. 

I was very reluctant to have my colon removed, and did everything I could to avoid it, but afterwards in my case it has brought great rewards. The issues that have come with a permanent ileostomy are all manageable. Yes get a second medical opinion if you don't trust the first one, but your doctor may be offering advice worth following.

Van Guy

Hey Lesley, sorry for your discomfort and confusion. Going from an ileostomy to a colostomy doesn't seem typical, but in your case, it seems your doctor wanted to be certain the colon cancer was gone and will stay away. If the recent abdominal pain was from the hernia or the fistula, it makes sense the doctor would want to fix that and, at that time, switch you over to a colostomy. I'm not sure, though, how that liquid was coming out of you and where it was from. There are lots of us with colostomies or ileostomies, and we're doing just fine. For you, I would feel better if your doctor(s) explained, in all the detail you need, to fully understand where you are, where you're going, and why.

Wish you the very best and please keep us posted.

Mike

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister