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Posted 8/25/2013 5:31 AM (GMT 0)
Hi, I have had crohns disease for over 30 years. I just came out of the hospital and was told I have 3 strictures. They have put me on prednisone as well as Humira and hope that this works. If not they will do surgery and either do a resection or a stoma. Anyone with information about a stoma would be greatfully appreciated. I am scared to death of this. Thank you! Sue

 

Posted 8/25/2013 9:34 AM (GMT 0)
I know how you feel. Had crohns for 10 years and nothing kept it under control in the end. It took a long time for me to decide on surgery (permanent ileostomy with anal closure). I was petrified but eventually I reached that point of enough was enough and I couldn't stay on the meds indefinitely so went for it and had my surgery 6 wks ago. So far so good. Uneventful recovery, surprised by virtually no pain and all going well. My surgeon said to me before surgery that my main concern had to do with getting my head around living with a stoma for the rest of my life and he would do the rest.
He was true to his word - it took 6 months of agonising over it but so far it has been worth it. I used to spend hours in the loo a day and now i spend a couple of minutes emptying the bag when i go for a wee. Changing it also only takes minutes so all in all I have loads of spare time now.
Its early days I know but I feel as if I've got my life back.
Hope this helps you.
Posted 8/25/2013 12:33 PM (GMT 0)
I had Crohn's disease for 13 years before finally having surgery in February this year: my whole colon apart from my rectum was removed and I have a permanent ileostomy.

Stoma is a surgically created opening which allows for the passage of waste or (won't apply in your case) urine. There are various types, named according to the part of the bowel they are created from. An ileostomy refers to a stoma made from end of the small bowel (terminal ileum), a colostomy refers to a stoma made from the colon, and so on.

Stomas can be temporary or permanent. In Crohn's, temporary stomas are used to divert the stool from a lower part of the bowel, usually in order to enable healing of an anastomotic join, fistulas, or whatever. If, however, you have to have your entire colon removed due to disease, then you will probably have to have a permanent stoma. If the rectum can be spared, there may be the possibility of connecting the ileum directly to the rectum.

You need to find out whether your stoma will be temporary or permanent. Ask if it will be a loop ileostomy or end ileostomy. Loop ileostomies are always temporary; a 'loop' of the small intestine is brought to the surface and has two openings ('upstream' is for waste, 'downstream' is for mucus). End ileostomies are mostly permanent; the end of the small intestine is brought to the surface and there is only one opening for waste.

If you do need to have a stoma, you need to get the site marked so the surgeon will know where to place the stoma. The hospital should have a stoma nurse who will help you do this.

Finally, make sure the surgeon knows the importance of creating a 'spout' about an inch to an inch and a half long. You don't want to be left with a 'flush' stoma (one that is level with the skin), as they are a nightmare to deal with.

Best of luck.
Posted 8/25/2013 1:24 PM (GMT 0)
Great job NCOT!!

I have a permanent ileostomy due to Ulcerative Colitis. My last med combo was the Prednisone, Humira & Colazol. No relief - while a stoma isn't something that everyone can readily accept - I love mine. I no longer have accidents and feel in the most control ever since my diagnosis.

A lot of great and helpful people here - ask anything you want :)
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