Revision surgery

Replies
11
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996
Chiquis
Jun 04, 2021 12:15 pm

I am considering surgery to have my ileostomy removed. I would like to know from others who have done this if it was successful or unsuccessful and what problems may have occurred. Thank you

Deziner
Jun 04, 2021 2:27 pm
Hi Chiquis
Remove your ileostomy? What is replacing it?
J Pouch?
I'm having a third ileostomy to convert my internal Koch Pouch to wearing a common ileostomy appliance.
I'd really appreciate hearing from you.
Thanks
Sharon
Deziner
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Chiquis
Jun 04, 2021 2:32 pm
Surgery to reconnect colon
Deziner
Jun 05, 2021 3:16 am

That's great! I know a couple of people who had this surgery. One had to wait a year until her colon was completely healed. Both of these people are doing great, as if they never had this issue.
Very happy for you.
Take good care of yourself.
Sharon????
To help me, what appliance are you using?
What about the items you used with your appliance?
Was leaking a problem? Did it make your skin raw?
Any other suggestions?
Thanks again!

w30bob
Jun 05, 2021 3:20 am
Hi Chiquis,

Reading your other post it sounds like you had colon cancer, which is why you got your ileostomy. The question is how much of your colon is left, and did they remove your ileocecal valve? I had a sub-total colectomy for my very first operation, and they removed the first 2/3 and my ileocecal valve, but no bag.....I stayed connected. I can say that was challenging, as without the majority of my colon intact and the valve to regulate flow....I had to know where all the bathrooms were whenever I left my house. If the majority of your colon can be reconnected intact then things for you would be much better. I think the amount of bowel anyone has intact is directly proportional to their quality of life. So you need to read your surgical report and see what they removed and what's left to reconnect to. I'm not familiar with colon cancer, so I'd also want to know what the probability of it returning would be, and if it was metastatic or not, before I weighed everything.

regards,
bob
 

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Chiquis
Jun 05, 2021 4:32 pm
That was so informative. I will definitely check the 400 pages (60 days in hospital) to find that report. The surgeon has had me tested with Mrs, cscan etc I'm ready but after reading your note it gives me pause. Thank you so very much. Merijane
Chiquis
Jun 05, 2021 4:52 pm
https://www.meetanostomate.org/index.php?page=view_profile&user_id=27110

I have had my ileosotomy for 1.5 years. Leakage was the biggest problem. I use Coloplast appliance. Before putting it on I clean the area well with water only. Then dry. Then pat the area with skin adhesive pads. Wait 30 sec touch to make sure it feels sticky. Apply the pouch working from the stoma outwards so there are no wrinkles
THEN I apply a semi circle adhesive barrier that is about 1 inch in width. Then I apply the 2 inch semi circular barrier
I wear a pouch for about 4-5 days. Rarely have a leak any more. Hope this works. Best of luck. merijane
looking forward
Jun 13, 2021 11:07 am

Just FYI, I had that surgery, but please know that it does not last forever. I had it done by the best doctor. He is the one who invented the coloscope. A couple of years ago, I had to have an ileostomy, or I would have died. Again, I was lucky because I had another of the best doctors. I don't know where you live, but mine was done at Tampa General in Florida by Dr. Marcet. Please reconsider. I wish you well.

Chiquis
Jun 14, 2021 4:10 am

Are you saying the revision or takedown surgery always has to be redone and you go back to the ileostomy? Or was that your experience? It was life and death and 2 months in the hospital for me. I don't know if I would do it if it's only temporary.

Sobecool
Jul 04, 2021 3:53 pm
Hiya! I did that and 6 months later had to have another ostomy and now having all sorts of issues with this one. Good luck to you.
Ebony&Ivory
Jul 05, 2021 11:11 am

Hey chiquis!
I had an unexpected emergency colectomy in 1991. I had no idea of what was going on, so I was completely dependent on the doctors treating me for guidance.

I was led to believe that with a j-pouch, my bowels would function normally. I had a temporary ileo for 6 months while the j-pouch construction healed. When I was reattached, I expected to be normal again. Not!

I had the j-pouch until 2017 when it had to be removed because, for the 25 years that I had it, my bowels were never normal or even close. I lived on the toilet. I was miserable!

I hadn't seen a gastroenterologist! If you can believe it, I was still seeing the surgeon who did the procedure in 1991 for all those years. I ended up having to leave the health system to get away from him.

Anyway, I finally found a surgeon who told me the j-pouch had to go. It was serving no purpose except making me sick.

The j-pouch was removed, and I'm glad that I was able to get the ileostomy. I wish I had kept the ileostomy in 1991. My quality of life would have been so much better for those lost 25 years.

There have been many advances since 1991, and ostomy procedures have improved. I'm not sure they even do the j-pouch anymore.

Make sure you have a good surgeon who isn't practicing some new procedure.

Good luck!

E&I

Miriam
Aug 13, 2021 6:43 pm
I had two attempts at reversal of ileostomy. Sorry to say they were not a success. The second led to septicaemia and almost death. The first reversal never worked properly and was a miserable experience. It works for some people though.