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New Here

Posted: 2020-09-25 18:24:44
by Star_7086
Hello! I am new here, and have had my ostomy for 8 weeks. My story of how I got to this place is rather long. The short version is about a year and a half ago I was told I needed colon surgery to remove part of my colon for diverticulosis. I have had diverticulosis for many years and it is extensive throughout my colon. There was only one area that had really started to give me a lot of problems and that is what they wanted to remove. They removed a foot of colon from my descending colon. I had an anastomosis and that was supposed to be it. The anastomosis closed off and 2 months later I had to have a second surgery to revise the area along with a hysterectomy that time. I continued to have problems and could hardly eat plus my pelvic floor muscles froze up. My surgeon kept saying it was fine and wasn’t concerned. I lost 50lbs and became extremely malnourished. I was down to 85Lbs. Finally I was made by a new family GP to get a second opinion. That surgeon said if I wanted to live to see 2021 I had to have a colostomy. 8 weeks ago I had my surgery robotically and got a descending colostomy. 2 days after that surgery they found that I was bleeding internally and was taken back to surgery where they gave me 2 units of blood and plasma. They had to open me up because they could not stop the bleeding laparoscopically. That surgery took 4 hours. The reason, I was told later, for the bleeding was that I was so malnourished that I had quit clotting. Also they said I had been living with a partial bowel obstruction for a year. The second anastomosis had closed completely as well when they checked it during surgery. I know that this colostomy saved my life but it is a hard adjustment! My muscles are completely atrophied and I still weigh 85Lbs. I do PT 2 a week and am eating better. One of my main questions is for anyone who has a descending colostomy, do you have a lot of trouble with blockages? I know people with Ileostomies do because it’s higher up and food hasn’t digested as much there. I have to eat well and healthy but it seems almost all fruits and vegetables are things that they say not to eat because of the skins. Are there things you have found that give you trouble or you absolutely can’t eat? I know everyone is different but I was just wondering in general. My surgeon said I could eat anything I wanted, but I am still scared to try very many things! Any suggestions or help would be very much appreciated! Sorry for the long post!

Re: New Here

Posted: 2020-09-27 18:08:45
by To Dream a Dream
Welcome to our board. Although I have an ostomy of the small bowel, diet & proper nutrition & also hydration are a major concern for anyone with an ostomy. Have you spoken with a WOC Nurse since your surgeries? Most have info that could be tailored specifically to your case. They may also have worked with a dietician who understands the challenges faced by people with ostomies & recommend a consult. Have you checked out the UOAA website? Here's are links that may help: https://www.ostomy.org/category/nutrition/
https://www.ostomy.org/diet-nutrition/
Please continue to visit our discussion board. We do our best to let our members know they are not alone.