Jump to content


Biomarker for Diffuse Scleroderma skin has been discovered!


Photo

loop ileostomy anyone!


  • Please log in to reply
3 replies to this topic

#1 summer

summer

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 522 posts

Posted 12 April 2011 - 11:11 PM

I am on a waiting list to have a loop ileostomy, hopefully within the next 3 months, and am just wondering how many people on this forum that have had to go down this path?. And also their experiences, pros and cons.

I have Limited/crest scleroderma diagnosed in 2007.

Many thanks

Summer :emoticon-dont-know:

#2 Jeannie McClelland

Jeannie McClelland

    Senior Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,706 posts
  • Location:in the Rocky Mountains of the USA

Posted 13 April 2011 - 07:37 AM

Hi Summer,

I can't offer any personal experience, but here is a link to the Cleveland Clinic's page on ileostomy/colostomy surgeries. I hope it goes well for you.
Jeannie McClelland
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network

#3 Chopper

Chopper

    Silver Member

  • Members
  • PipPipPipPip
  • 124 posts

Posted 13 April 2011 - 03:30 PM

Hello! I am newly diagnosed, but even though GI troubles are my main concern I haven't reached that point yet. I can't imagine what you've been through to reach this point?! I hope someone will come along with something to share! I hope it goes well for you! Let us know!

Chopper
Limited Scleroderma, Hashimotos Thyroiditis, Celiac, Gastroparesis, GERD, and Gastritis.

#4 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 13 April 2011 - 05:18 PM

Hello Summer

I really hope you don't have to wait long and that the operation gives you relief from your symptoms I remember you said in a previous post that you were having to visit the toilet about 20 times a day and this was preventing you from getting out of the house. I have interstitial cystitis and when in flare I am tied to the toilet, it can be miserable!

Please let us know how things go and take care.
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)