Jump to content

Do you want up to date information about Scleroderma? Check out our Medical pages at www.sclero.org for all your Scleroderma questions!


Choosing an 'Ostomy'

  • Please log in to reply
2 replies to this topic

#1 judyt


    Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPip
  • 638 posts
  • Location:Auckland, New Zealand

Posted 20 November 2012 - 09:57 PM

Hi All,

Those of you who have been around here for a while will remember that I have major issues with bowel incontinence. In January this year I had an implant of stage 1 of an SNS.

This procedure was complicated by the fact that I almost immediately had a bowel blockage caused by Band Adhesions and which was corrected by a Laparoscopy. It took weeks, and months really, to recover from that surgery and eventually, in June I had stage 2 which is the implantation of the battery pack and controller.

This has not been particularly successful, due I am sure to the amount of damage my poor insides have suffered. We (me and the colorectal nurses) are still trying to find a programme which will help properly but I fear that we are on a one way road to nowhere.

The next consideration is to have all this gear removed and to think about an 'ostomy' which is as most of you will know is an opening in the abdomen wall connected to a bag.

I have researched fairly much on different sites but to date I have not found anybody who has had this procedure because of Scleroderma. I know Summer did last year because she told us some of her experiences during the process but she does not seem to have been coming on the Forum lately. I wonder if anybody else has taken this option?


#2 Joelf


    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,552 posts
  • Location:West Sussex

Posted 21 November 2012 - 06:00 AM

Hi Judy,

Well, I'm fortunate not to have gut / bowel involvement but I've found you a link to Bowel Diversion Surgeries: Ileostomy, Colostomy, Ileoanal Reservoir, and Continent Ileostomy which I'm hoping might give you more information. We've also got another thread on Ileostomy, although you might have already found that one! ;)

I'm really sorry to hear that your surgery for bowel incontinence hasn't been successful and hope that an 'Ostomy' will provide a better quality of life for you. Hopefully, we may have other members who've had this procedure and will be able to give you more first hand information.

Best wishes,

Jo Frowde
ISN Assistant Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)

#3 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,263 posts
  • Location:Minnesota

Posted 24 November 2012 - 09:39 PM

Hi Judy,

Either ostomy's are pretty rare in our group, or people who have them just aren't talking about them. I suppose the end result is the same, no matter what illness inspired the ostomy in the first place. I had a relative who had one for about fifty years, and she lived into their mid-90's, even taking on a new boyfriend in her 70's. So she at least set a great example that there is "life after"!

I'm sorry it's something you need to consider. But if it's inevitable, we'll all be here for you, come what may.

Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.