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Crohn's Disease Forum » General IBD Discussion » Stoma for perianal crohns. Stoma in general anyone?


06-07-2017, 07:41 AM   #1
Lintel
 
Join Date: Dec 2012
Location: Carluke, United Kingdom
Stoma for perianal crohns. Stoma in general anyone?

So partner is now likely going to be getting a stoma to help heal his perianal crohns. Wounds... Fistulas... Setons...

He is terrified.
I would really help if some of you lovely folks could share your experiences of recovery times.. Your life now.. How it changed you?

Just generally helpful information wanted please he is really struggling with it mentally.

Hope your all well x
06-07-2017, 08:02 AM   #2
ronroush7
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You might want to check under the Surgery section also. There is a Stoma Support group there.
06-07-2017, 08:33 AM   #3
Lintel
 
Join Date: Dec 2012
Location: Carluke, United Kingdom
You might want to check under the Surgery section also. There is a Stoma Support group there.
Thanks x
06-09-2017, 08:19 AM   #4
BlueSky
 
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Join Date: Apr 2015
Location: Bay Area, California

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I had a illeostomy for perianal Crohn's. I resisted as long as possible and was suffering tremendously at work with multiple long-term fistulas. I was also losing a lot of weight. Ultimately I was incontinent and in too much pain to continue, and my attitude changed quickly. That's nothing you can force. But here's the good news: My fistulas and back end improved at lighting speed. I was shocked at the improvement just days after surgery while I was still in the hospital. I had a normal butt again! Suddenly the hand mirror was my friend. And most importantly, I was out of pain. That's what changed my attitude about a stoma instant presto. I was out of pain, able to put on weight, able to sit comfortably, and I no longer had to run to the bathroom and sometimes not make it. I didn't realize how much of a burden i was carrying until it was lifted. I actually took a picture of my backside before surgery to remind me why i was doing this. Making a list of all your fistula challenges and what you're missing can help.

Stomas are very individual and require a personal adjustment. Make friends with your stoma nurse. I've had some rare complications to work through and its still worth it to me. What's the first thing I did after surgery? I sat my pain free bottom down in a kayak for the first time and paddled around with friends for my birthday. I saw pelicans, cranes, and sea lions. I cried with joy I felt so free. I hope you find that freedom too. All the best to you both.
06-09-2017, 11:26 AM   #5
Bufford
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Join Date: Dec 2015
Location: Northwestern Ontario

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Bluesky stated it well. I went through the same thing, 20 years of living with fistulas that would not respond well to surgery or treatment. The pain, incontinence and depression losing weight took their toll until I had the biggy- an abscess that held over a liter of puss. I was told I needed a stoma.
After the surgery, recovery took months. I spent a full month in hospital to get the fistuals to start closing up, with another 3 months of homecare coming to my house to change the packing.
It took a year for the fistulas to close, but I have to live with the stoma for the rest of my life.

What was the first thing I did after surgery?; two things actually, on my second day at home I ordered a full 10 bush cord load of white birch in 8 foot lengths. A month later I spent a night at my remote cabin away from home. I watched the medical evacuation helicopter fly overhead and cried in joy. It was the same one that took me into the hospital earlier for the life saving surgery. But the difference this time was that I was looking at it from the real world deep in the forest instead of from the hospital window.
06-09-2017, 05:49 PM   #6
Lintel
 
Join Date: Dec 2012
Location: Carluke, United Kingdom
Thank you so much he is finding the replies and postivenes really helpful unfortunately we are in limbo just now as his surgeon he request has been too busy to see him but we have dietcian involvement in the hope of building him up abit before surgery... 48Kg and 5.11ft not ideal!
06-10-2017, 05:29 AM   #7
Ozboz
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In the same situation as the above poster's I had a perianal crohns for 10 years lost half my body normal weight for me is around 80kg's now 45 I now have a fistula and abscess which has closed with antibiotics since being in the hospital. I'm now in hospital on TPN as i'm too skinny and anemic for the big chop also apparently my large intestine and rectum have become too thick or something like that from constant disease and have adhered to the small bowel. was booked in for a ileostomy but scans before surgery have shown more problem's than first anticipated. I was resisting stoma surgery for the last 5 years as was suggested to get done back then as colon was that bad back then. But I was the eternal optimist that things would get better with meds they did for a time but then the pain and accidents came back I have done a lot of soul searching and and research plenty of youtube videos on people with stoma's that helped a lot as well. I honestly can't wait for my surgery and live the rest of myself as best I can.

P.S. I threw countless amounts of money at my crohn's acupuncture, naturopath's, complimentary medicine's etc... I have a temporary stoma but my colon didn't respond to rest and med's so now waiting for a permanent one and just want to move on to be completely honest I'm mentaly and physically exhausted and want a more normal life again I know it will be better with the stoma.

Last edited by Ozboz; 06-10-2017 at 07:01 AM.
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