Rectal-vaginal fistulas

[PrincessKatie]

I recently had surgery on my two rectal-vaginal fistulas. They took out the cetons that had been in place to allow drainage. Rhen they plugged up the tracts with synthetic fibrin. The goal is for the fibrin to start the scar tissue process and completely close them up. I did my do dillagence of two weeks bedrest but gas is now escaping through one of the holes. I am not sure if this is bad or really bad.  The surgery only has a 60% success rate in Crohn's patients, but I really want this solved before ny wedding in June!  Anyway, I wanted to hear from other women coping with this problem. So far no one understands but me what cetons are like. What having poop come out of your vagina is like!  How you can't control expeling gas since holding it in just pushes it out the tracts freely. I don't want to bring this with me to my marriage bed!

[Lauren6286]

Wow, it is great that you are so involved with helping others with that support group. I a sure there are a lot of people that really depend on you. So, now I have figured out that you are from England lol. I'm from Pennsylvania. What exactly is the ostomy bag and how does it work? I was just curious...

[Jax23]

Hi Lauren, I do know why people don't get ostomy bags when they are told that they should but believe me, I went through so much before the operation. The bag is a dream, really. So much less discomfort than having to sit for ages on a loo!!! It really all depends if you have a Colostomy (remaining large colon) or an Ileostomy (large bowel removed mostly along with the rectum/anus). If it is CD, you still have to be careful because CD can still come in the small bowel. I have changed the profile to include an email address. Just take the spaces out from each side of the @ sign.

Lauren, discussing the bag definitely does NOT embarrass nor upset me. I work with the Ostomy Association and advise people of the products to use and possible solutions to problems some of our clients have. Some of them also will only deal with me when they have a question. We are not nurses so we cannot advise on medical things. I am also the Chairperson for the new Ostomy Support Group. So, if you have any questions, please ask me, I will be more than happy to discuss it with you.

Yeah, the EX hey, he is totally snowed in at the moment and all of his family hates the English winters because of the snow and the cold. So far this winter, it is both.... Hey hey, I win again... I love the snow and playing in it!!! HAHA  ;-)))))

My problem with a relationship, is I cannot have sex because of what the vagina and opening where the anus used to be is leaking out. It is giving me thrush and it stinks as you know. I am happy just to be friends. I have other little friends that can help out the other way without a partner...  LOL

JAx


x

[Lauren6286]

Oh... one more thing....

I am reeaaalllyy sorry about what you had to go through with your Ex. You deserve so much better than that, and I know you will find someone who understands what you are going through and who can get past it.

[Lauren6286]

Hi again...

I was just re-reading through the posts and saw one from you about having your rectum/anus removed and having an ileostomy bag.... If you don't mind, what is that like?
I appologize if asking this upsets you, and know that you don't have to answer if you don't want to.

-Lauren

[Lauren6286]

Thank you so much for all of your support. I really like this site because it assures me I'm not alone, and although I feel awful at times, I see that there are many, many of you who have it worse than I do. Jax, I would love to keep in touch with you. Your e-mail address didn't show up on your message though (blocked out by asterisks), for privacy reasons I guess. I check this site frequently though, so I guess we can communicate through here.

Best Wishes to Everyone,

-Lauren

[Jax23]

Hi Lauren, I have since decided that the dating scene is not really my scene with the problems I have. So, I have changed the 'search' to friendship and then things can develop from there if that is what fate decides. I am 40 next month and got CD when I was 36. I do feel so much for you being much younger than I was. My then husband, trashed me because a) his mother no longer liked me or my condition, b) men mostly cannot handle the partner being ill and c) he was just pompous and thought his sh*t didn't stink! He offered me the choice of the ileostomy operation or a divorce... I took both. Long story. My husband did say that the way my disease was going and my moods to go with them, drove him away. What absolute rubbish. He saw the pain and discomfort I was in on a daily basis and decided, I think, it was just too hard.

My email, if you want to keep in touch with me, is ***@**** and I will reply to you all the time. The support itself is great. Keep with the positive attitude and don't let the bugger beat you. Really, head down and bum up at college and become something you want and don't let the medical problems bring you down. Do things to prevent embarrassment and let yourself have a fulfilling life.

Jax

[Lauren6286]

It is so comforting to know that there are others dealing with this (as horrible as it is to want others to share in my misery). You don't have to tell me if you don't want to, but you said you were entering the dating scene; how old are you? I'm 23 and have had a steady relationship for 5 1/2 yrs, so he has been with me through all of this, especially since I was just recently diagnosed about 6mo ago. I felt like no doctor would ever figure me out...a complete mystery. You know, I have so many problems, I feel like I'm driving my boyfriend away sometimes, but he assures me that I'm not, because none of this is my fault. Like you had mentioned with the pads/drainage, you really never know how much, and when. I was adventurous one day, when the drainage was light/non existant for a couple of days, I thought I could go sans pads and just line my bottom with tissue (I know that sounds gross). Well, I was wrong. When I got up from my seat after class (thank god my coat covered my butt), I, out of habit, non-chalantly checked my butt, and of course thats when the pus decided to come back...just can't win! Also, it's really embarassing, even though I'm totally comfortable with my bf, to be in intimate situations.. you know, for him to see my stinky pus soaked pads, to have to put a towel under myself etc... Sometimes I just feel completely helpless about everything. It's like when one problems subsides, another one takes its place. I just want to get better and to stop feeling like nothing will ever change.

[noel44]

Hi, I too had recto-vaginal fistula, for almost 4 years! Once I went on Cimzia,about three months later I noticed the fistula has healed, (no gas or feces out the vagina).Hang in there sweetie, something will work.

[Jax23]

Hi there, just me again. Lauren, I know how you are feeling about the removal of the seton, but if you can hack it, leave it there. It will help with the drainage as you know and will keep the fistula open. If the fistula ends close, you will once again be in massive pain with the abscesses. I too get the mouth ulcers and at one time I couldn't swallow water without it feeling like someone was pouring acid down my throat.

As you said Lauren, I also wear 2 sanitary pads at one time to collect the leakage. Sometimes I have to change the main pad and sometimes there is so little on it I could've gone without that day. But one never does know what the body does in this situation.

My CD took off like a lightning bolt and within 11 months I had the Ileostomy.

I hate the constant smelly draining too and have just started going on the dating scene and don't know how it will go. Thinking friends will be all I gain.

Good luck everyone with what you get done and hope you get really top doctors who are able to fix you.

[Lauren6286]

Hi Everyone...

My name is Lauren and I'm 23yrs old. I was just diagnosed about 6 months ago, but have had Crohn's symptoms since I was 14. No doctor was ever able to pinpoint it because my symptoms were very slow, and not typical. Crohns for me began with swelling of my upper lip, which I eventually had to have surgery on because it wouldnt go away. I suffered with mouth ulcers a lot.. so bad that I often couldnt even eat or drink water without pain. The gastro problems didnt start until I was about 18. Unlike typical Crohn's, I never suffered with diarreah, I suffer with constipation. I was diagnosed with Perianal Crohn's because, so far (thank God), my intestines have not been affected, so I'm able to eat most anything, but some foods obviously are horrible for constipation. Miralax has been an absolute godsend!!! I am about to go for my 5th Remicade infusion at the end of the month.... I think it's helping, but I'm not sure.. since the drug is an anti-inflammatory, I can't see what it's doing inside of me. I also take 2mg of Dilaudid for the stomache pain... especially when it gets bad, because I can't eat, and I can't afford to lose anymore weight. I was a healthy 135, and at my lowest went to a frightening 102. Thanks to this protein powder weight gainer that you make shakes with, I was able to get up to 110... trying to get to 125!

I would love to tell you guys everything I've been through over the years, including other health issues I am going through, but I feel like I'm rambling lol...
I feel really happy to be able to talk to others who are suffering with problems like mine.  I don't have the vaginal fistulas, but I do have rectal fistula's. I had my Seton put in at the beginning of September 2009, and It has definitley helped me. I was in the ER twice for emergency drainage of rectal abcesses, because I was in soooo much pain and so constipated I felt like I was gunna die. The Gastro Surgeon that drained my abcesses basically told me to look for other doctors because she didn't know what else to do with me. My mom found a wonderful Gastro Surgeon at the University of Pennsylvania (about 40 min from my house--I live in Bucks County,Pa). His name is Doctor Joshua Bleier, and he is who put in my seton. Although I can't stand wearing those ABD pads in my underwear, I am thankful that I am always draining. But, it like a vicious circle... I can't stand the constant, smelly drainage, but drainage is good, because that means its not backing up into an abcess. I just wonder if the drainage will ever stop without causing another rectal abcess! I'm almost afraid to ever have my Seton removed. Thanks for reading this.. hope to hear from all of you soon...

-Lauren

[Jax23]

To you both

I have had 3 or 4 anal/vaginal fistula and since having my rectum/anus removed, I have now a collection with sinuses (same as fistulas) into the vagina. they can be painful as you both know and rather depressing when it comes to the bedroom side of things.

I now have an Ileostomy bag and it is much better. But, intimacy is still hard as your options are limited. You'll know what I mean.

How, after a couple of months has the operation gone?

I have found with CD, with medications being different in many individuals, that healing is sometimes long and arduous. If an any case you heal at all. I am still open from the operation to remove my anus and have been restitched up once. The doctors have said they will not do again as the Methotrexate is not promoting healing but actually inhibiting it. I cannot go off the drug as it is holding the CD & related arthritis' at bay.

UncontrolledSarcasm, you are correct, no one is ever alone! There is always someone out there who can sympathize with you.

Good luck PrincessKatie on your wedding day and hope everything is sorted out for you by June.

JAx

[UncontrolledSarcasm]

I totally relate!!!!!
   The only difference is that my docs have told me that there is really nothing they can do for my rectal vaginal fistula. I have had it for over a year, but my GI couldn't find the opening when he did the last scope. He sent me to a surgeon, who also couldn't find the opening. They made me feel like I was crazy. They may not be able to see it, but I know it's there because it leaks all the time.
   What was the surgery like? Was there any pain? Even with only a 60% success rate, I'd like to try something.....anything.....to try and make this stop. I am just so tired of feeling "not so fresh".......sounds like a douche commercial.....lol. Image one of those commercials with women like us standing around talking about our leakage. We could really promote for the hiney Wipee business.....lol. But seriously, I don't leave the house without a supply of wipes.....keys, cell phone, wipes...check, ready to go.
   Let me know how things work out for you. And know you are not alone.
Love & Luck! :-)
UncontrolledSarcasm