- Joined
- Feb 28, 2013
- Messages
- 6
Hello friends,
Crohn's -- diagnosed when I was 20~. No real issues until around 30~.
Flare ended up causing blockage for one day, which lead us to find a real bad narrowing of the terminal ileum, and a fistula from that area to the rectum.
Surgery is suggested. After 5-6 scans, I'm told we'll remove a small part of my small intestine and resolve the fistula. I'm told there will be no long term complications because we're removing so little (<8% is what I was told once).
This is good, because I'm afraid of surgery; and definitely can't cope with something like an ostomy. It's just hard for me to think about personally.
I man-up and am prepping for surgery just 3 weeks later. Doc tells me all scans look good and we'll just put me out, cut a little out, put me together... let me heal then get me on Remicade or something and try to manage reoccurance, since it's all in that area they are removing.
They put me out for surgery.
I wake up in major pain in the recovery area. I scream for help, but the only person I can see (and my vision was messed) was straight up ignoring me. I begged for a reply even, and she never said a word to me. I eventually fell back asleep (I don't know if from pain meds or from the sheer pain). It was literally the worst pain I could have imagined. I don't know how I existed for that duration.
When I come to again, they have me doped up as hell. Long story short, I learn they removed the section as discussed, but also parts of my sigmoid colon... and worst of all for me, despite my wishes, I had an ileostomy.
This was December 2015 -- few months ago.
It's ruined my life. At least in the sense of the "non-essentials to simply survive" parts. Sex life dead. Personal life dead. Emotions horrible. Clothing impossible. Sores around ostomy always. etc.
So right now my small intestine peeks out. My large intestine is pretty much entirely in-tact but it's disconnected on both ends. From the small intestine, obviously for the stoma, but also disconnected from the rectum.
They say the rectum is inflammed and they cannot reconnect it until it settles down. It's been months.
At first, they gave me a suppository called Canasa telling me it'll help with the issue and possibly fix it. After shoving these butt pills in me for 2 months, I'm told that never would have helped by another doctor and then just recently started on Remicade. I also feared Remicade because it's listed as a drug that can kill you, and I've heard horror stories, but right now my life pretty much is one within my own limits of cope.
They say turning my ileostomy into a colostomy would be a better quality of life (and I agree with them), but they aren't going to since we're not giving up on healing me yet back to "normal" attachings.
I'm having a real hard time coping with this. I signed up for having a small part cut out and being put back together, but ended up here.
I'm praying to God that the Remicade causes my rectum to chill out so they can reconnect me. I would have dealt with the narrowing and issues prior to surgery differently if I knew I was going to be landing with an ileostomy.
I know some people live with stomas daily and live well. I'm just not strong enough for that.
I'm so afraid of what the future holds, and I don't know for sure yet. I'm hoping people here can tell me what to do, expect and try; so I can attempt to get stitched back together. I just want my rectum to calm down so they can put me back together, and I'll keep on these drugs like Remicade to try and keep things well. I'm under the impression everything but my rectum is in good standing (of course 8%~ resected, however). I'm worried about it being disconnected for so long, however.
Remicade infusion went fine. No issues -- thankfully.
I didn't have much of a sterotypical fun 20s for other reasons. Life has really been interesting and "catching up on the good years" in my early 30s, but now that's been robbed from me and I, I'm just asking for your advice.
Crohn's -- diagnosed when I was 20~. No real issues until around 30~.
Flare ended up causing blockage for one day, which lead us to find a real bad narrowing of the terminal ileum, and a fistula from that area to the rectum.
Surgery is suggested. After 5-6 scans, I'm told we'll remove a small part of my small intestine and resolve the fistula. I'm told there will be no long term complications because we're removing so little (<8% is what I was told once).
This is good, because I'm afraid of surgery; and definitely can't cope with something like an ostomy. It's just hard for me to think about personally.
I man-up and am prepping for surgery just 3 weeks later. Doc tells me all scans look good and we'll just put me out, cut a little out, put me together... let me heal then get me on Remicade or something and try to manage reoccurance, since it's all in that area they are removing.
They put me out for surgery.
I wake up in major pain in the recovery area. I scream for help, but the only person I can see (and my vision was messed) was straight up ignoring me. I begged for a reply even, and she never said a word to me. I eventually fell back asleep (I don't know if from pain meds or from the sheer pain). It was literally the worst pain I could have imagined. I don't know how I existed for that duration.
When I come to again, they have me doped up as hell. Long story short, I learn they removed the section as discussed, but also parts of my sigmoid colon... and worst of all for me, despite my wishes, I had an ileostomy.
This was December 2015 -- few months ago.
It's ruined my life. At least in the sense of the "non-essentials to simply survive" parts. Sex life dead. Personal life dead. Emotions horrible. Clothing impossible. Sores around ostomy always. etc.
So right now my small intestine peeks out. My large intestine is pretty much entirely in-tact but it's disconnected on both ends. From the small intestine, obviously for the stoma, but also disconnected from the rectum.
They say the rectum is inflammed and they cannot reconnect it until it settles down. It's been months.
At first, they gave me a suppository called Canasa telling me it'll help with the issue and possibly fix it. After shoving these butt pills in me for 2 months, I'm told that never would have helped by another doctor and then just recently started on Remicade. I also feared Remicade because it's listed as a drug that can kill you, and I've heard horror stories, but right now my life pretty much is one within my own limits of cope.
They say turning my ileostomy into a colostomy would be a better quality of life (and I agree with them), but they aren't going to since we're not giving up on healing me yet back to "normal" attachings.
I'm having a real hard time coping with this. I signed up for having a small part cut out and being put back together, but ended up here.
I'm praying to God that the Remicade causes my rectum to chill out so they can reconnect me. I would have dealt with the narrowing and issues prior to surgery differently if I knew I was going to be landing with an ileostomy.
I know some people live with stomas daily and live well. I'm just not strong enough for that.
I'm so afraid of what the future holds, and I don't know for sure yet. I'm hoping people here can tell me what to do, expect and try; so I can attempt to get stitched back together. I just want my rectum to calm down so they can put me back together, and I'll keep on these drugs like Remicade to try and keep things well. I'm under the impression everything but my rectum is in good standing (of course 8%~ resected, however). I'm worried about it being disconnected for so long, however.
Remicade infusion went fine. No issues -- thankfully.
I didn't have much of a sterotypical fun 20s for other reasons. Life has really been interesting and "catching up on the good years" in my early 30s, but now that's been robbed from me and I, I'm just asking for your advice.
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If they can eventually reverse the ostomy, just wait a little longer and see - have you been on maintenance meds between the period of your 20-30s? Also, did you tell the doctor why they felt the need to do ostomy specifically after you told them you don't want it? I would get a second opinion - just because you need to find a GI that you feel comfortable with...
