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For people with crohn: when they proposed you a permanent ostomy?

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Posted 12/27/2012 3:19 PM (GMT 0)
I'm aware they can propose it if rectal high grade dysplasia, rectal cancer, or incurable fissures/strictures.
Please can you describe what situation you lived when you decided for a permanent ostomy?

I'm on a temporary route, at the moment I've a terminal ileostomy and attending an IRA, but my crohn's involves the rectum so I'm not sure the IRA will succeed.

Thank you.
Posted 12/27/2012 5:08 PM (GMT 0)
Hi.
I have crohns disease. It was pretty bad and medicines were not working anymore. My doctor said it was time for surgery. He said I could have a jpouch, but I had disease in the rectum and would end up being on meds still and battling with that so I decided to go permanent.
Posted 12/27/2012 5:39 PM (GMT 0)
please can you detail? Did you have perianal disease? Fissures, strictures, abscesses? Or just inflamed? The ileum was involved?
Posted 12/28/2012 3:55 AM (GMT 0)
I think it has more to do with your quality of life, not the specifics of the disease. I've had crohn's colitis for fourteen miserable years... Through my marriage and the birth of my one child. I was not able to have more children because of all the medicines I was on. I am now 43. I have tried every single medicine, diet, herbal therapy, etc. and I realized one day my life was a living hell, I was a horrible mother, wife, friend. ... And a skeleton of myself due to weight loss and no energy.

I didnt have strictures or fissures or precancerous cells, but I lived in fear of going out because I had to go to the bathroom 15 to 25 times per day. I would have many accidents. My entire colon and rectum were badly diseased. I was told five years ago to have a permanent ileostomy and I cried hysterically for a week, and switched doctors. I have been living in fear of having " a bag."

Jump ahead five years and too many meds later, I now have a permanent ileostomy. I am 7 short weeks out of surgery and I can honestly say I made the right decision. For me, I had to accept it on a mental level first and once I did I moved fast and didnt look back. Am i worried my crohns is going to return? Heck, yeah! But i refuse to live in fear anymore.

Good luck!
Posted 12/28/2012 8:02 PM (GMT 0)
I actually had disease and inflammation in the rectum and that's why I decided to go permanent.

I am glad not to be spending so much time in the bathroom anymore. In and out in less than a minute.
Posted 12/28/2012 8:59 PM (GMT 0)
I had pan colitis with rectal involvment, with a nasty fissure which wouldn't heal. My anal canal was very narrow and my gi was considering a ballon stretch. I lost a lot of blood and weight. Humira stopped working and I was steroid refractory. Reading posts here I kind of had my mind up that I wanted surgery, as I couldn't see a way out. When my surgeon suggested a temp ileostomy, I went for it. 6 month later, though the pain was gone, I was still sick with active crohn's in my unused colon, I opted for a panproctocolectomy rather trying remicade. As I had disease in my rectum before, I choose the full monty, didn't want any further surgeries down the line.
Posted 12/29/2012 12:37 AM (GMT 0)
I have Crohn's and a permadent ileostomy. I had extreme rectal involvment, I had various rectal abcesses and fistulas. I also went to the bathroom 35x a day and was considered unresponsive to medication. I had done them all including Remicade and had some horrible side effects from the large amount of prednisone I was on like I ended up in the ER with a blood sugar of 966 and took insulin 5 x a day because the prednisone was rasing my blood sugar so high.

I visited the Dr Present out of Mt Sinai in NY who happens to be one of the top Crohn's specialist in the country and he also encouraged the permadent ileostomy
Posted 1/3/2013 1:50 AM (GMT 0)
I have not yet had surgery, but I have spoken to a colorectal surgeon a few times. The proposed operation is a panproctocolectomy with ileostomy. I've been told I can book for surgery at any time, but I have not yet done so - waiting to see what happens in the next month or two and what the consultant suggests when I see him in February.

I did ask about a temporary ileostomy, but apparently they're done for Crohn's people with fistulas or UC folks and I was not a suitable candidate. So I was told.

I don't have fistulas, abscesses, perianal disease or severe rectal involvement. I do have pancolitis and a stricture at the terminal ileum. A year and a bit ago I flared up and was extremely ill, despite having begun Remicade: 40C temp, obstruction symptoms, etc. Stayed in hospital for a couple of weeks and nearly had surgery then, but the gastros talked the surgeons out of it, arguing that Remicade should be given longer to work. It didn't, but because of Pred, I've avoided surgery. I'm nearly off yet another course of Pred and awaiting another flare-up with trepidation...

That's my situation. I feel pretty isolated, tbh, because nobody with Crohn's ileocolitis seems to have had this operation... :-/
Posted 1/3/2013 7:49 AM (GMT 0)
NCOT, when I had my surgery the surgeon removed most of my terminal ileum (ca 13 cm) too, although it was never affected by my crohn's. I think it's just a weak spot with this disease. Do you have any other small bowel involvement?
Posted 1/3/2013 1:26 PM (GMT 0)
Hey, our stats are fairly similar, Lovetoski: I'm a 37 (soon to be 38) female in the UK, diagnosed in 2000.

Just the terminal ileum is affected: at one point I had a 15cm stricture. Not sure what length it is now, but am certain I have one... :-/

My main fear is the disease returning after surgery: I know it is much more likely if you have disease in the terminal ileum :-/
Posted 1/4/2013 12:19 AM (GMT 0)
That's my situation. I feel pretty isolated, tbh, because nobody with Crohn's ileocolitis seems to have had this operation... :-/

I am sorry you are feeling this I have had this surgery. Total removal of everything, colon, rectun, anus. I will say that the rectal/anus surgery is really the hardest part. I also had terminal ileum involvement and had some of it out to, I am 13 years past suergery and I am considered in remission even though there is still Crohn's in my small intestines.  I had a revission due to a massive parastomal hernia, December 2010 and they found no Crohn's at the stoma sight at all which was great since that is where it seems to reoccur. They also moved my ileostomy to my left from my right to be far from the mesh for the hernia because they said that is where the Crohn's would reoccur if it did, at the mesh patch....

Let me know if I can help you in any way or if you have any questions.

Post Edited (JillOtt) : 1/3/2013 5:22:45 PM (GMT-7)

Posted 1/4/2013 2:45 AM (GMT 0)
I actually had UC, but I chose a bag over a jpouch because I didn't want the extra surgeries and worry of the pouch failing. I know it's rare, but if something is gonna happen, it's gonna happen to me, lol.
My GI really wanted me to at least consult for the jpouch but i was adamant against it. My surgeon tells other patients my story of how I came in and said, "Take this out, I don't want a jpouch, I want a bag. I want this over and done"
I'm very happy with my decision, that was almost 6 years ago.
Posted 1/7/2013 11:01 AM (GMT 0)
Also had pan colitis, when I had surgery (ileostomy) they discovered I didn't have enough bowel to creat a pouch, so mine in permanent. I ended up in hospital for a month and three surgeries later so the thought of going back for more just seems unbearable, so just as well it's here to stay.
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