Recto-Vaginal Fistulas - Part 5

Penny,

It seems as though I am the first unsuccessful flap repair that my CRS has done. This is why he would need to try a transvaginal repair and said he would want my gynecologist to assist him since he would repair through the vagina. I am not sure that he has done transvaginal repairs. That's a question I will need to ask. I know my gyn does not have experience fixing fistulas. I guess he would be helpful though in identifying healthy tissue in the vagina to use for the repair. My gyn recommened a urogynecologist that could possibly help with a transvaginal repair. I mentioned the name of that doctor to my CRS and he says he knows him as well and could talk to him.

There's really nothing we can do right now since I am only 7 weeks out from my failed surgery. I know we need to wait a few months before another surgery can be done and also wait to see if it heals. I just don't think it is going to just go away. Since I am a teacher, I would like to try another repair at Christmas if needed since I have 2 weeks off of work.

Have you heard of anyone getting a fistula fixed with a graft? or some other tissue from the body to help repair? I feel like I have bad tissue that just won't hold..... At least I am not passing stool (only if I am extremely loose). I still get gas coming through... not much though since I am trying not to eat gassy foods.

Thanks Penny for listening and for your thoughts!

Beegirl- I am glad you were able to be with your husband. Did the CRS tell you that you shouldn't have sex for that long? Mine told me that I could go back to having sex.... but my husband and I want to wait longer since the CRS said there's a possibility it could just heal.

Hope you all have a good week! Keep in touch!

CJ

Hello ladies. I just came upon this thread and figured I would add my experiance as well. ;-) I had my daughter back June 4, 2001. Her doctor was a total quack and screwed up majorly. When she gave me the episiotomy (sp?) she cut all the way to my rectum. And when she went to sew me back up, she didn't sew me up all the way. Well the second BM I had after giving birth I noticed some fecal came out both holes. So I went back to the ob and mentioned it to her and she told me that it will heal, just give it time. Another month passed and it was worst, every time I tried to hold in gas it just rolled right out of my who ha. I told her about it and she said the same thing. I went back to see her and she checked me out and said I was fine, knowing I wasn't. So I asked her if she could just open it and fix it and she said sure and that it will hurt real bad and she wouldn't be able to give me anything during or after for the pain. When I left her office I was upset. I didn't want to go through that pain. So 3 years passed and I finally got tired of it and went to a different doctor. They did a bunch of tests (the colonoscopy was HORRIBLE) and saw that I had a large recto-vaginal fistula. About a year later it was time for the repair. They told me if I was to have any more children it would have to be by c-section or else I would end up losing all functionality of my colon. Now, the only problem I am having is getting pregnant again, but I think that is from a whole different issue. The reason I say the colonoscopy was horrible is because there was 2 doctors in the room and 7 med students, one of them triped over the legs on the scope thing and jammed it further up my bum. But, they also warned me that having reconstructive surgery could either make it 50% good or 50% worst. But it was different for me, my sphenctor (sp?) is only 40% opporational, which is better than what it was. It's still hard for the fact I never have firm stools anymore, they are always soft and when I have to go to the bathroom, I have to RUN or else I end up going in my pants. But I am glad I had the surgery and would rather have a c-section coming pregnancies anyways. After having one heck of a delivery like I did, but that's another horror story its self! XD

Dear all,
I hate to post a negative reply when everyone seems to be getting on so well but my nightmare continues. My repair (the 4th and with a colostomy) spectacularly failed last night after 14 days with solid stool as well as soft coming through - worse than before the op. I am distraught.

I beg anyone reading this who might be in the UK to suggest a specialist I could see - and if anyone is visiting their surgeons in the States soon - if you were to ask them if they know of anyone I could get a second opinion from because I can not go on like this. The stoma was supposed to be answer and it is as if I didn't have it. I just don't know what to do.

Any advice from anyone would be welcomed.
Beegirl and Penny I am glad things seem to be going OK for you - I read your posts even when I can't face replying. To everyone - good luck and I know my story is not typical.
Bea

Bea....I am so sorry to hear about you, I wish I knew of some one to help...I will most certainly ask my docs at Cle if they know of anyone and my nephew who is a foot surgeon who has spent time in London working and has some contacts there, so I will ask him to ask them....This is not good news at all....

Do you have a Loop colostomy or a end cut one?

Please please try not to get too down, you still have our love,prayers and support....be angry, you have the right, but don't get too down, not a good place to be....

new Guest....sounds like you have had a run of not so good experiences with doctors....very important to have good supporting docs that listen and I would refuse the to have an audience during my surgeries.....it's your body, throw a hissy if you need to then find other doc...Did your RVF heal up and close off? Research research is what you need to do alot of.

Penny and Bgirl...holding up ok? I am hanging in there, plotting my next visit to CRS hopefully in Oct to see what the fistula is up to...and then I will determine whether I get another repair attempt of not, it'll be 4 months since my last failure and 3 months with stoma....then if I wait until Nov -Dec it'll be even longer.....think that's enough time? I have the name and have contacted a different CRS also, so If i don't like what mine says...move on..well, time to get ready for work, students are moving on campus and they are like lost pups without mommies and daddies !!!

CJ....if you aren't having any stool comng thru and just gas....personally I'd wait it out, I wish I did after I first discovered mine as it was small and the failed surgery made it bigger and harder to repair and now I have a colostomy and waiting......keep the stools as formed as you can......loose stools are a fistulas worse enemy.

everyone, take care and remember we are all here for each other...be good
Flower

OH BEA!!!! I AM SO SO SO SORRY, I READ YOUR POST AND HAD TO TAKE THE TIME TO REPLY..... WHAT I DON'T UNDERSTAND IS WHY YOU ARE GETTING SO MUCH STOOL COMING THROUGH EVEN WITH THE COLOSTOMY? THAT DOESN'T MAKE SENSE-WHY IS THAT HAPPENING? I AM HERE WITH YOU...AND THINKING OF YOU...GOD, THIS WHOLE THING SUCKS..WHAT DID YOUR DR. SAY? BEEGIRL

Bea,

I am so sorry! I will be praying for you. I don't understand either how stool can come through if you have a colostomy??

Has anyone ever talked to you about some sort of graft repair?

If anyone has any info on a graft repair please let me know.

CJ

Hi Beegirl and Flower,
THank you for your replies. I know there isn't much anyone can say in a way but it is good to at least be able to tell you. I will allow myself today to feel down and from tomorrow onwards use my anger to drive myself forwards.

Beegirl - I don't know why so much is coming through - it has got worse the longer i have had the stoma. Another thing to ask my doctor about. I am going to re-group before going back to them for answers.

Flower, - if you can ask for a name that would be great. Anywhere in or around London would be ideal but I'd consider anyone to get an opinion. I may well stick with my current consultant but I will feel happier for checking with someone else first.

Bea

hello Bea...I already have asked him, so now I will give him a few days as he can be scattered brained...great foot surgeon, but a little scattered on life issues sometimes.....How ya doing? Keep the upbeat attitude because that is what will get you thru things....

I'd be interested in knowing why stool got thru also.....just doesn't sound right......keep us informed...

flower

Hello everyone,
I am so disappointed, Bea, that don't don't have a success to report, too. It sounds like you're giving yourself some time to experience all your feelings and using them to move forward. I think we've all been in that place when we tried to believe all was well and then we became faced with needing to make a new plan. You have certainly had more than your share.
I am still confused about your colostomy. Some of us have had ostomys but I believe they didn't let anything through so that the fistula had nothing passing and could stay clean, so to speak, to begin to heal. Is there a possiblity that you could get that kind? I dont' understand why one would have a colostomy if it allowed matter through anyway? Maybe I'm being very dense. Looking for another opinion sounds like a great idea. When I talk to my CRS about 'new' things regarding sphincters, she talks about the UK and Europe in general as the area that has the most of offer. It sounds like flower might be able to help you out.
Flower are you a teacher, too? Life changes when school begins. 3 and 4 months sounds good. The more the better. I had a failed repair in June and found it had healed in January. I think fistulas are hard for anyone, the doctors I mean. After being with an MD for a year and a half, and her knowing how difficult having one was for me, after my reversal she was saying I could deal with it if I still have it by changing my diet. What was she thinnking? Maybe she needs a few more years of experience.
CJ,I met an MD in Boston that wanted to do a graft with a muscle from my leg. My regular CRS advised against it suggesting the more traditional route. I'm afraid I have lost confidence in MD's or at least don't assume anything without checking things out on my own. We have to become our own Doctors really.
My little whine today is that I found out you need to make sure you get your supplements, if needed, in different ways when you have an ostomy. If they don't travel down your intestines depending on the kind they don't get absorbed and then you get osteopenia, like me. I'm sure I had some of it before, but why couldn't someone say what pills are you taking and let's see if we can get you some that will actually absorb into your body while you have the ostomy? I guess I was in charge of that!
Good luck Bea. Remember we're all thinking of you. We have large Clinics here that people go to like the Lahey and Mayo clinic. Do you have them?
taker care all,
Penny

Bea - I am SO sorry that your surgery wasn't a success. My heart just sank reading your post. I don't have much to offer in ways of advice, but just wanted you to know that I was thinking about you and am praying that you will heal. Hang in there, take the time to go through whatever emotions you need to move on.
All the best,
RLWmom

Hi Bea......I asked my CRS at Cle Clinic and he gave me a name of a Doc in England...A Dr. Robin Phillips....at St. Marks in Northover Park, I hope this helps to give you more options, he was also interested in knowing who your current CRS is, if you want to tell me, you don't have to....Are you feeling better today? What does your Dr say about the stool getting thru even w a colostomy? That alone would depress me knowing the colostomy wasn't doing it's job. let alone a failed rvf surgery......I guess I too don't understand....But know we are here for you ...

Penny..no, I am not a teacher, a trained travel agent/ flight attendant until my Crohns put an end to that,,,I work at a branch of Pitt Main in the campus security office....interesting job !! But I have worked at our local high school in the attendnace/disciplinary office for a long time too....not to mention a marching band mom !!
I agree, my Dr was very frustrated in the failed surgeries, I actually thought he was giving up on me, when I finally understood that he was giving himself a hard time over the surgeries.....Changing diets WILL NOT work, been there, tried that....a joke, but what is osteopenia? I have never been able to take vitamins in pill form as they would just shoot thru me pretty much whole....I have an abnormally fast metabolic rate, I process food thru me within 2-3 hours, sometimes sooner, thus why I use a drainable pouch with colostomy vs. the disposal ones, as I have to "go" and empty out 6-7 times a day and 1-2 times a night....and it's usually more liquid, which makes me glad I went for the colostomy instead of the ileo.....I will wait a few more months before I plan my next surgery.....I hate to set myself up for a disappointment before I need to....

CJ..I have not heard anything about the graft repair, just the usual tried ones, that have both success and failures....

Bea, don't give up....you will get there, just a longer road to be taken is all...take care every one
Flower

Dear all,
Many thanks for your replies and support. It means a lot it really does. I feel a bit better today after a quiet but upset day yesterday. I was also feeling sore because of all that stuff coming through - more coming through the fistula than the back passage. THings are much calmer today. I am also trying to do some research and all your info is v helpful. So spirits are improving - 'pick yourself up, dust yourself down and start all over again'. It is hard when it knocks you back but once I get going again I'm usually OK.

Flower - My doctor is Professor Kumar at St George's Hospital, Tooting, London. ALthough it is in South London it is part of London university so he combines being a Professor at the medical school with being a consultant. He also has a private practice at ST Anthony's in North Cheam (a small place but part of the south london suburbs). I have had repairs in both places.

I will look up the doctor your CRS mentioned. Thanks for the suggestion.

Penny, CJ, RLWmom, Flower and beegirl - thanks again to you all. I hope you are all OK for now.
Bea

Hey Ladies,

Bea-i am glad you are feeling better--go see about why u are getting so much stuff coming out the "regular" way--remember mine did heal over time!!!!!!!! DOn't give up hope-what scares me is the amount of stuff coming through-how can it heal???

Penny-hey thanks for all your support... i am doing better each day...my stoma scar, like yours, looks like someone stole some fat-wish i could get that done some other places..,,ha.

Be good ladies, i am getting confused about posts, so if someone asked me anything and i did not answer-ask again. beegirl

He Ladies,

Heres's a question: I don't have a colostomy, but in my posts I mentioned that my surgery failed, however I haven't been passing stool hardly at all. It has been over 2 weeks now since I've passed stool. I have been avoiding foods that give me gas, so I haven't really been passing gas... I think gas here and there has gone through the fistula. My CRS said my fistual could heal over in a few months. Which I am not counting on... but okay.. I will wait and see since I would have to wait awhile anyways before having surgery again. So, my question is..... Do you thinK it is safe for me to exercise and have sex? He said yes... but I feel like if there is any chance this thing could heal, should I not exercise or have sex to somehow help it heal? or does it not matter?

Let me know your thougts! My husband is very supportive about sex, but I really want to exercise. I was very active in classes at the gym. Did you all exercise at all during your healing process with or w/out a colostomy?

CJ

Penny,

Hey... I did feel some air come out vaginally...ugh... you said you had this happen too--did you ask your dr. about this? yours hasn't gotten increasingly bigger or anything has it? Oy... anyway, hopefully this is just a small thing. b