I had an emergency colostomy in December for diverticulitis that had perforated my bowel wall. The surgeon found that everything inside was stuck to other structures with adhesions from seven endometriosis surgeries years ago. Diverticula from one end to the other. Every time I see him he goes into it about how I am one of the worst cases he's ever seen. I also developed sepsis and was in ICU three days. Now I am scheduled for reconnection surgery in early June and he just mentioned that he's bringing a urologist into the mix to insert stents so he can identify the ureters and that news has sent my anxiety soaring! I was in the hospital 19 days from Nov-Jan, sick as a dead dog and am terrified of something going wrong and ending up worse off this next go around.
I lost about a third of my hair from the sepsis, had neuropathy EVERYWHERE. Even my hair (what's left) hurt. Could hardly stand to touch myself anywhere but that's under control with gabapentin. I just found this site and have been devouring the information. Nobody told me much when this happened. I learned how to use all the various parts of the various items in a pouching system from YouTube. SO great how the medical profession is so quick to cut you and leave you in a compromised state with NO information to deal with it. I've learned more from this site this morning than I did with a zillion health care "professionals". They need to do a much better job at educating and supporting people like us.
Hello MissRubydoux. Welcome to this site and I'm pleased you have found some usefull stuff to read. So sorry to hear about all you problems but in particular that you did not get a proper briefing from the medical profession about what it was all about.
I don't know about 'them educating us' - it seems to me that we need to be educating them. It's a pity there isn't the same sort of review process for them and their work as there is with stuff we buy on the internet. Then we could read both the good and the bad reviews to get a picture of what we are in store for .
Best wishes
Bill
MeetAnOstoMate is a remarkable community of 41,403 members.
“I found real people, real humor, and answers I couldn’t get anywhere else.”
“The support here impressed my husband’s medical team - they plan to recommend it.”
“This community saved me when I thought I was a freak. Now I’m thriving.”
“Thank god for this site - I finally knew what to ask my surgeon.”
Hi Mike and all. I am not sure how panoramic my perspective really is as my peripheral vision shrinks with each passing year. I can tell you that when I came to this website six years ago I was truly ;impressed by the positive attitudes of so many members, especially the younger folks who refused to let their ostomies define who they were or what they would become. I also came to appreciate that having an ostomy is not the same thing as having a disease. Pardon ;my pun now, but ostomies and cancer don't belong in the same bag. One is a solution, the other is a problem. Celebrating National Ostomy Day ;is also well outside my comfort zone. That's like celebrating National Wheel Chair Day. Come on!
I think there is a ;need for improved ;public awareness of ostomies, but I am not sure how that's best done. There ;remains ;some social stigma attached to our situation, and it's acutely felt among our young. We need to get out of the dark ages on this issue, but not by going 'in your face' to everyone else. I think Bill and NDY are 'spot-on' when it comes to telegraphing the right message to friends and family. People will know how to react when they ;see ;how we accept the cards we were dealt. I also appreciate the contribution some people here are making to this effort through their publications.
On a personal note, my son has been suffering from ulcerative colitis for years just like I did. I am very concerned because people with UC are at a higher risk for colon cancer. Years ago my GI told me to get annual colonoscopies to be on the safe side. I am glad I did because he eventually found pre-cancerous cells which led to several surgeries and my becoming an ostomate. Since then I have always ;conveyed a positive attitude to ;my son about wearing a bag because it has kept me alive to enjoy many more years with my loved ones. I think he got the message. We both go to the same gastroenterologist in NYC and get scoped on the same day. Father and Son moments!
Someone once wrote that our children are the letters we write to the future.
PB
Hi MissRubydoux,
Sounds like you should be making a list of questions that the doctor needs to answer before your next step. Best wishes to you!
Learn about convexity and 4 myths surrounding it.
Hi Miss Rubydoux!
Please forgive the late reaction - I am going through a very difficult time.
How are you? Did you undergo stoma closure? My stoma was supposed to be temporary (3-4 months) and it's been over 18 months. I have chronic constipation due to narcotics to treat Arachnoiditis symptoms. So, I am too scared of a new perforation caused by fecalomas if I undergo stoma closure. I also lost a lot of hair (trauma reaction?) after colostomy. Wishing you all the best... fingers crossed.