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Posted 5/22/2021 1:38 PM (GMT 0)
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Post Edited (pine88) : 6/27/2023 11:25:41 PM (GMT-8)

Posted 5/23/2021 6:47 PM (GMT 0)
I am just looking into surgery and have the same fear.
Posted 5/24/2021 2:54 AM (GMT 0)
I am sorry that you are going thru this. There are others that have had the surgery you are requesting information on. Hopefully they will come along and add their experiences.

What has your doctor recommended? Does your doctor want to do this all at once or thru multiple surgeries?

I have severe fistulizing Crohns. I have had 3 colostomy surgeries. (2 were due to adhesions/blockages) They did create a Hartmanns pouch but they left the rectum/anus intact the first 2 times. (My colorectal surgeon tries to leave it alone unless there are issues that he can not find a work around for....or if you develop signs of a higher risk for developing cancer.) I have a low rectovagina fistula and the mucus drainage was causing UTIs, that I could not clear while on antibiotics, so a 3rd surgery was required. The 3rd surgery game plan was to remove the Hartmanns pouch, rectum and anus. (Which should remove the mucus producing problems and hopefully clear my UTI issues) They performed a modified APR and removed the Hartmanns pouch, the rectum as much as possible and scrapped the anus..(so it basically is just a thin flap of skin with an opening.) So my experience is probably not what you are looking for.....but my surgeon said he has had many patients ask him to do this rather than the other. (With me...there were physical reasons why we could not completely remove the anus.) He indicated that depending on the person some people don't need to have the anus/rectum completely removed. I think Its easier on the patient.

I don't know if this is an option for you..but for me it appears to be helping. I do know there was another lady that was on the forum that had a surgery very closely resembling mine. She had some issues but seemed to be doing ok.

Oh...and for me...everything still works and feels. No pain.

Clo

Post Edited (clo2014) : 5/23/2021 8:59:00 PM (GMT-6)

Posted 5/28/2021 1:34 AM (GMT 0)
I am unsure if leaving the anus intact is the right thing for everyone. For me...for right now ...its the right thing.

I would recommend a heart to heart with the best colorectal surgeon you can find. Then I would get a 2nd opinion just to be sure. Research as you are doing and have everything organized and ready.

I can tell you that its been about 6 weeks post operative and the rectum removal and anus scrapping has made it so that I have to be very careful how I sit and for how long. I spend alot of time on my side. But I have had pyroderma gangrenosum...and it showed its ugly face after this surgery--and caused my abdomen wound to reopen. We are now letting it heal from the inside out... There is mucus like drainage from my abdomen and from my rectum/anus. Some people heal much faster and don't have all the issues I do. My friend had everything removed and she was back at work at 4 weeks. Biking at 6 weeks. So huge difference. (And she's over 60!)

Any questions please let me know...

Good luck!!
Clo
Posted 7/17/2022 11:07 PM (GMT 0)
Hi Clo2014, how are you doing now? Hope everything is going well <3
Posted 7/31/2022 6:19 AM (GMT 0)
pine88,

Thanks for reaching out! I'm hanging in there. How are you? Did you have surgery?

I am postmenopausal so my situation may be different from yours. When I suddenly developed Crohn's I still hadn't gone thru menopause...but my periods abruptly stopped after getting so ill. (My Mom and sisters didn't go thru menopause til they were pretty old) I had/have an active sex life. I haven't lost any "feeling" down there that I know of and there isn't any pain. Sex life is not complicated by a colostomy too much. You know it's there and you have to ensure your colostomy bag is emptied before hand...you don't do anything to knock it off. I've been married to the same person for a very long time... So that may make a difference.

I just went thru a "scope" with the colorectal surgeon to check everything. I still have my colostomy...and my anus. I can't sit in one position for a long time. It's painful. I also have mucus leakage from the anus, but that happened before this last surgery. The colorectal surgeon used a laser during the operation and my rectom removal was lopsided - so I do have a longer piece of rectum still attached to one side of the anus that they missed. It's the side that they scrapped that gets painful though. We are still planning to leave it alone unless there are issues requiring removal.

The UTIs stopped for about a year. They came back. We are now trying estrogen cream, a special cranberry and D-Mannose supplement. They seem to be helping.

One of the things I try to stress to others is that having a ostomy is what you make it. If you move forward and look for the positive that's what you will be more likely to find. If my colorectal surgeon and GI had been able to show me how much a colostomy would improve my quality of life I would have done it sooner. It saved my life and gave back the ability to enjoy my life. I no longer have to look for a toilet every where I go. I don't have to take Imodium before I leave my house. There are some things that bother me... Bag ballooning, skin irritation if I don't change my pouching system in a certain way....but The trade off is so worth it to me... And more importantly to my kids and spouse. I still have Crohn's and other health issues but life is much better with a colostomy.... For me.

I hope you are doing well.

Clo
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