- Joined
- Jun 27, 2011
- Messages
- 312
hiii everyone! havent shown my face around here in a while! there are so many newbies i don't know but hopefully will get to know better!
well got my permanent ileostomy july 2011 when i got my colon rectum anus removed as my crohns has alwasy been active there. in march this year i developed a hole at the base of my stoma (where the stoma meets the skin) output comes out from here which ive learnt to prevent leaks by cutting the bag slightly bigger on this side. i had been and still am feeling great i'd say i'm 99% well which i definatley cannot complain. this year has been by FAR the best year of my life- and not because ive done anything particulary interesting but because i have felt so well and have been loving life (for once).
had a scope last monday to investigate the hole as it could have either been a fault with the stitches that were there or a fistula meaning the crohns had returned in my small bowel this time. unfortunatley they gave me the news that the crohns is back which i always knew would be a possibilty but was still very disapointed. still not getting any tummy pains as such more like heavy feelings now and again. the dr wanted me to start on azathioprine straight away which i have been on before when i was 12. i convinced him to let me try pentasa first as it has less side effects and means i don't also have to take contraceptive pills as i would have to/want to with the aza.
if the pentasa does not close the fistula, i have to go on aza, if that doesn' work i'll be having a few 'blasts' of infliximab (which i was on for 6 years) and if that doesn't work i will need stoma revision surgery.
bit of a waiting game from now but wanted to know what meds you guys were still on??? i had been on strong meds since i was 10 and i guess after my panproctocolcetomy they just wanted me to be med-free for as long as possible so i guess im lucky to have had the break.
still very glad i had my original surgery though! it saved my life!
well got my permanent ileostomy july 2011 when i got my colon rectum anus removed as my crohns has alwasy been active there. in march this year i developed a hole at the base of my stoma (where the stoma meets the skin) output comes out from here which ive learnt to prevent leaks by cutting the bag slightly bigger on this side. i had been and still am feeling great i'd say i'm 99% well which i definatley cannot complain. this year has been by FAR the best year of my life- and not because ive done anything particulary interesting but because i have felt so well and have been loving life (for once).
had a scope last monday to investigate the hole as it could have either been a fault with the stitches that were there or a fistula meaning the crohns had returned in my small bowel this time. unfortunatley they gave me the news that the crohns is back which i always knew would be a possibilty but was still very disapointed. still not getting any tummy pains as such more like heavy feelings now and again. the dr wanted me to start on azathioprine straight away which i have been on before when i was 12. i convinced him to let me try pentasa first as it has less side effects and means i don't also have to take contraceptive pills as i would have to/want to with the aza.
if the pentasa does not close the fistula, i have to go on aza, if that doesn' work i'll be having a few 'blasts' of infliximab (which i was on for 6 years) and if that doesn't work i will need stoma revision surgery.
bit of a waiting game from now but wanted to know what meds you guys were still on??? i had been on strong meds since i was 10 and i guess after my panproctocolcetomy they just wanted me to be med-free for as long as possible so i guess im lucky to have had the break.
still very glad i had my original surgery though! it saved my life!
