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discharge from Vagina after rectum removal.......

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Posted 12/23/2017 2:49 PM (GMT 0)
Hi all. It has been a long time since my last post.
First I am wishing all merry Christmas and a happy and hopefully HEALTHY holiday season smile

There is a condition known as Horizontal Vagina syndrome. Google it.
After proctocolectomy/protectomy the orientation of the vagina becomes more posterior without the intervening rectum..
I have read that up to 45% of women who have had surgery for IBD complain of heavy vaginal discharge that leaks out of the vagina.
Unfortunately I know about this too well. I have had a total proctocolectomy several years ago.
Been to gynecologist...urogynecologist .....didn't have an answer for me.
Had tests that ruled out vaginal fistula...negative.
I did research.....and boom...there it is in black and white.
I hope this helps some women who are experiencing this.
Posted 12/24/2017 4:54 AM (GMT 0)
I don't have that personally, but it's interesting and I hope you can find a solution. Please check back and let us know. smile

What can you do if you have this?
Posted 12/24/2017 2:08 PM (GMT 0)
HI NSSG. I have read of a certain surgery called the Kylberg operation. It sounds VERY aggressive....a major surgery. Given my history of many, many surgeries leading up to my total proctocolectomy and the many surgeries I had to endure after my total proctocolectomy (TPC).....I would never entertain the thought of actually doing the surgery. Too many possible complications....infection etc.

To deal with my issue I wear a thin pad.
In the near future I am contemplating going to a colorectal surgeon to get his take on my situation.
I will NOT be going back to the original surgeon who did my TPC. He is the reason I had suffered and had problems after my surgery.

I have read that there might have been some additional things done during my TPC to prevent this from happening...like creating some kind of internal sling.
I will see what this CR surgeon says as I have a lot of respect for him as he did an ostomy revision and fixed a very small hernia defect this past May. My stoma (Lucy) is perfect now.

I also want to say for those who read this thread, I am doing REALLY well. Life is 100% better compared to my life with my Crohns disease. For that I am forever grateful!!!
Posted 12/24/2017 6:24 PM (GMT 0)
Twingirls, you are a Godsend!!! I couldn't wish for a better Christmas present than what you just posted. I had a proctocolectomy with end ileio in 2010. I was just a few months short of my 64th birthday. I went through the change at age 44. A month or so after my operation, I started to bleed from the vagina, not a heavy flow, but enough to wear a pad. I was so alarmed. I called my colorectal surgeon who informed me it was probably from the operation, but to be on the safe side to go to my gyn doctor. My gyn wanted to wait another month before performing a transvaginal ultrasound because he wanted to make sure I was fully healed. Everything was fine. I still continued to spot occasionally. In 2014, I started to feel pressure inside the anus. My surgeon left just a few centimeters and I am not sewn closed, although I do not have a rectum or colon. In my surgeon's opinion there are more complications when that procedure is done and I did have complications on the operating table as it was. Long story short, my original surgeon had retired in 2013, so I sought out a new one. My new surgeon believes I do have a recto vaginal fistula, but it probably is up under the rectal cuff. Although I no longer bleed, I do have quite a bid of discharge still coming out the vagina. I just wear a panty liner. Since I still have the anus, my new surgeon does yearly biopsies inside the anus, just to make sure it does not become cancerous. He said it would be a BIG operation to try to remove it. I am now 71 and it pretty good health for my age. What I can't understand is why the gyn no longer performs PAP tests on women over 65! You would think with my issues, they would do a PAP! Anyway, I am due for my biopsies on Feb 6th. I asked the colorectal surgeon if I am at risk for cancer of the anus and he said there is a 0 to 4% risk of cancer. That's pretty good odds of not getting it. Sorry this is wordy.
Posted 12/24/2017 8:37 PM (GMT 0)
HI Christine. So glad you saw this thread. I hope I have helped others too.
I know you have been dealing with your discharge issue for quite a while now.
All my specialty gynocologists never even seen or heard of this. Then again...how many patients in their practice have an ostomy. We are members of a special club.....and a lot of health professionals don't come across us that often. Of course colorectal and general surgeons see us all the time in their patient population.

I spoke to my gastroenterologist about this syndrome....he knew nothing about this but I will say he was so pleased to be enlightened.

If I have helped anyone by initiating this thread.....then I am so thrilled.
Christine, next time you go back to one of your Drs, see what they say. Print out from the internet..I believe it was a pub med article or from medscape ...or just google Horizontal Vagina Syndrome.

Knowledge is empowering. I know for me I believe I have found the answer to my bothersome symptoms.
Posted 12/26/2017 2:05 AM (GMT 0)
I certainly will find it and print it out. I have an appointment Jan. 19th at the colorectal surgeon's office. They make me come in before the biopsies to be checked out. I'll bring the info at that time. Thanks again!!!
Posted 12/26/2017 2:11 AM (GMT 0)
After rereading your post, it just may be possible I don't even have a recto-vaginal fistula! It just may be that Horizontal Vagina Syndrome. They tried to find the fistula a few years back by inserting a dye into my vagina and tracking it. I forgot the name of the test. They couldn't find it! My problem was not Crohn's, but ulcerative proctitis, before my operation.
Posted 1/16/2018 11:51 PM (GMT 0)
Twingirls....I google Horizontal Vagina Syndrome and a bunch of sites come up. Is there one in particular I should be reading? I am going to the colorectal surgeon's office this Friday and want to print the info out for them. Thanks!
Posted 1/17/2018 2:21 AM (GMT 0)
Hi Christine.
When you google Horizontal Vagina Syndrome you will get some good sites to go to.
Click on the NCBI article and also the medscape article.
The medscape article talks about Inflamatory Bowel disease..a complicating factor in gynecolologic disorders.
Scroll down to vaginal discharge.
Hope this helps and good luck at your visit.
Posted 1/18/2018 12:41 AM (GMT 0)
I printed out the NCBI article, but for Medscape, I can't get into the page. I'm not a member and I believe you have to be in the medical field to get into the site. Well, this one article should do it. Thanks again. I certainly don't want another operation. Sounds horrifying!
Posted 1/18/2018 1:51 AM (GMT 0)
Christine....Sorry you are having trouble getting access to the medscape article.
At least you now know about such a condition...and you can start a dialogue with your Dr.
Hope your appointment goes well.
Posted 1/20/2018 1:48 AM (GMT 0)
Hi Twingirl.....well, I went to the colorectal surgeon's office for my pre biopsy visit. The PA in his office is extremely nice and she and I have always had good conversations. I gave her the report on HVS. She had never heard of it! As she was reading the report, she started shaking her head "no"...lol. She said she sure wouldn't want that operation, she would just wear a panty liner and go on with her day. Since I am having no discomfort, no pain, why would I ever want to put myself through such a horrendous operation just so I wouldn't have discharge from the vagina? It's like those commercials for the medications they give you for depression...the side effects may kill you, but you won't be depressed anymore tongue . Thanks again for that information. I go for my biopsies on Feb 6th.
Posted 1/20/2018 7:14 PM (GMT 0)
Hi Christine.
I would never opt for surgical intervention either.
Hope all goes well with your biopsy.
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