My ileostomy for my fistulas

Did an ileostomy heal your perianal fistulas? If yes - how long did it take you? (I know everyone is different, just wondering.)
If no - how are you feeling?

I've had my loop ileostomy since September of last year: almost one year next month. I have some fistulas gone, but not all.

Dashin - If it was July then just got to give it time. Life with an ostomy is not hard, but not easy either lol. I still have crapty days due to my crohns flaring up, but the good days outweigh the bad ones. Like this morning I realized I only have one bad fistula left. I say bad because I have setons in place to all my fistulas but they stopped producing stuff. I do hope your fistula clears, the best of luck to you, just stay positive as much as you can.

No. The highest number of fistulas I had was 5 at one time but Remicade helped on some...had 2 with setons for 8 years with loop ileo while maintaining with Cipro and Imuran. Eventually the drugs stopped helping and I opted for Proctocolectomy.

I was still really sick during that time but the ileo allowed me to live my life and be a mom to my daughter...still do all that after the proctocolectomy...just without drugs and pain. (knock on wood!)

Deviantstoma said...
Did an ileostomy heal your perianal fistulas? If yes - how long did it take you? (I know everyone is different, just wondering.)
If no - how are you feeling?

I've had my loop ileostomy since September of last year: almost one year next month. I have some fistulas gone, but not all.

The fistulas you still have, are they draining a lot? Are you on any medication as well? Some, like remicade, have been known to help close up fistulas.

Deviantstoma said...
VeganOstomy - My fistulas do drain, but I wouldn't say a lot. My doctors took me off all those meds, which I'm glad. I used to loath taking humira every week and imuran everyday along with those scheduled blood tests which weren't that bad compared to the meds.

I can certainly relate to that feeling.

I didn't have my rectum long after my ileostomy, but there was some improvement. Not sure if they would have fully healed as my perianal disease was quite severe.

Does your GI expect them to close any more?

Deviantstoma said...
VeganOstomy - I still have my rectum, and some fistulas have closed to the point there's no more drainage. My crohns is perianal also, and I still get nightmares from the horrible pain I used to get before my ileostomy. My doctors are expecting them to close around the setons, which some have already, and I had a couple without setons that scarred up a few months ago. All I can do is keep fighting this thing until i reach remission.

Sounds like it's just a matter of time before you'll be all healed up :)

I wish you the best of luck

Deviantstoma - I've been doing research on the fibrin glue and it doesn't seem too effective for people with Crohn's. My surgeon even said that a year ago before I had the ileostomy and was just dealing with stubborn perianal Crohn's. However, my surgeon now says it's a different story since no stool passes through the rectum anymore and I have no infection. Haven't been able to find too much out there to see if that's true. I HATE the setons though. One goes fairly far out onto my cheek and is quite uncomfortable. But I'm also terrified to remove them - I'm doing pretty well overall right now. I don't want to go back to the monthly abscess draining at the surgeon's office.