Hello everyone, I have a question about my fourth ostomy surgery. I have been having issues for the last year with hernias and an abdominal fistula with an abscess. I had drain tubes, CAT scans, and x-rays, and I was just hospitalized for 3 weeks to find out I am malnourished and now on TPN. I got my first surgery in 2011, so I've had a stoma for quite a while, been disconnected from my large bowel for quite a while. Now they're saying they want to remove the rest of my colon and my rectum and sew my butt shut. I'm devastated. My last colonoscopy showed to be clear, so I'm really confused on why they want to go and do that. What they are supposed to do is revise my stoma and fix the hernias. Has anybody else been through this? I really don't know what to think or how to feel.
Hi JES,
You said a lot there, and some of it doesn't make any sense, but maybe it's me. Let's get the facts straight first, so tell me if I'm reading you right.
You've had an ostomy since 2011. Possibly a colostomy, but it could also be an ileostomy... not sure. But regardless, you still have part of your colon, as well as your rectum. You've been dealing with hernias, an abscess, and a fistula for the past year. You were just hospitalized for 3 weeks, but didn't say why. Was that to repair the hernia, abscess, and fistula? While there, they determined you were malnourished and put you on TPN. So why were you malnourished? Sounds like something is going on, but you don't say what. So now they're saying they want to remove what's left of your colon, as well as your rectum, and sew up your butt. Now why would they want to do that?
I think you need to get more info from your docs. Find out what exactly your condition is and what the options for courses of treatment are. You also NEED to get a second opinion on all this before you let them remove your colon and rectum. I'd call them on Monday and find out what's what. If you're not comfortable discussing things with your doc, then have them text or email you a summary of your condition and their suggested path forward and post that here. Sorry I can't be of more help yet, but you really need to understand what's going on with your condition.
;O)
Bob
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Well, I hit the two year mark. I went back and read my posts from when I first found this site. I was very fortunate in that I stumbled upon it only 4 weeks post op. I have said many times that this community really saved me. The first 2 weeks after my surgery I shut down completely. It wasn't until about the 3rd week that my son came in to my room, flicked on the light and told me I was going to have to get back to living because I was scaring him. I had fallen into such a depression. He ticked me off, but it also made me stop and think- what was I going to do? Feel sorry for myself and sulk, or be grateful I was alive.
I've re-read my journals from that time and it was after my son kicked my butt, so to speak, I took an honest inventory and had to dig deeper than I've ever had to. I mean, I had survived a pretty nasty divorce, after a pretty crappy marriage and that was tough. But this was different. I felt like I was now a handicapped person who would be limited in their life and be looked at as a freak. My mental state was precarious, at best.
But then I found this site. I just lurked a bit before posting. I read so many of the other stories and I started to see just how full my life can be, I was not handicapped, and certainly not a freak! The stories of survival, the sense of humor, the support and compassion was inspiring. It was then I made myself get out of the dark, and get my sh*t together.
Not all rainbows and sunshine at first, hardly! But with grace from myself - to myself, and the kindness and willingness of the folks here to be supportive, non judgemental and openly share intimate details about their life circumstances, l not only survived but thrived.
I think of all the years I had suffered with such extreme pain, barely functioning, and the many hospital stays and how that is all behind me now. (All fingers, toes, and legs crossed that I never have to go near a hospital for myself ever again. I think I'd rather have a fork stuck in my eye. I loathe every about them.)
So, to everyone who has been a part of this journey with me, to say thank you is not enough. I'm forever grateful to know you all. My Angels, each one of you.
And as the Grateful Dead famously said,
"what a long strange trip it's been!"
Im so happy I'm tripping with you all.
Like Bob stated: you need more information from your doctors and a second opinion. It's major surgery. You need all the facts to make an informed medical decision.
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