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 pretty cool site with 40,038 members.
There are people here from all walks of life - musicians, firefighters, academics, artists, photographers, paramedics, police officers, teachers, mechanics, entrepreneurs, surfers ... and they all have a stoma.
The main thing is - here, everybody understands what you're going through. And that feels good.
Many come for advice, others stay for the friendships. Some have even found love!
And it's not all about ostomy - we talk about everything.
🔒 Privacy is very important - your profile is not visible to the outside world.
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!
The good news is that you can avoid them with some small changes in your diet.
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.