EDS and Colostomy: Seeking Advice and Doctor Recommendations

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Daisy Mae
Oct 25, 2012 3:23 am
Hi all.  Wondering if anyone has had a colostomy due to complications from EDS which is a connective tissue disease.  Doctors now believe my bowel perforated due to EDS - rather than divertic.  This will likely mean my situation is much worse as another perforation could occur at any time.  also need medical expertise so if there is a doctor out there who is familiar with my disease, it would be great.  I live in Canada.
Bill
Oct 26, 2012 5:39 am
Hello Daisy Mae.  Thank you for your post. I had never heard of this condition before.  However, I Googled it and came up with a very informative website: http://www.ehlers-danlos.org/index.php/ehlers-danlos-syndrome-mainmenu-17 . I feel sure that such an organisation would have contacts who specialise in this around the world.  It might be worth a try to contact them.
Best wishes. Bill
Posted by: freedancer

In both of my cases, I had no choice. It was surgery or be put 6 feet under! I thank God that He has been with me all these times. Without Him, I never would have known what to do and might not have gone to the hospital when I did. I don't know if you have had your surgery or not yet but I hope you will hang out on this website when you are done. I have learned a great deal through the people here and it is so great having others who have had the same thing done and been through what you are about to or have gone through. The only thing I have turned down is a reversal of the ileostomy. When the doctors did the emergency rebuilding of my original ileostomy this last February, I told them I did not want to go through this again. My doctor told me at that time that I was no longer a candidate for the reversal. In a way, I was very relieved. The last three years of my life have been a nightmare for me. I do not want to go through any of it again. If you wish to be rehooked up and they say you are a good choice for that, research it carefully. Every surgery I have ever had except for Old and New Maxine and the emergency surgery on my broken foot, I have spent weeks researching. I recently had my C5 C6 disk in my neck replaced with an artificial one. I went to my pre-op with 2 pages of questions for the doctor. I knew everything that they were going to do and could talk intelligently with them. I always try to research my adversaries! Don't cancel your surgery. It is nice not to have to suffer any longer with horrible pain. We all had to change a few things around when we had our surgeries but in the long run, most of us are glad we did it. I know I am. Good luck to you!

Daisy Mae
Nov 11, 2012 4:38 am
Tnx Bill for replying .  Yes, I am aware of that org, and others.  Very good info but no one on these networks is candid about having had a colostomy.  Am still hoping someone with EDS on this blog will find me.  I remain hopeful.  Tnx again for looking up that up - it means one more person knows about EDS - a disease that is more common than most people realize.