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This post is an extension of the

Recto-Vaginal Fistulas - Part 3 thread.

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Hi Girls,
I wonder if you have different appliances to me as I've nto had any major problems with leaks from the stoma bag. But I think you said that you had an ileostomy whereas I have a colostomy. With the colostomy things are a bit firmer and I don't use a drainable bag. I use "one pieces" which has the downside of changing the whole appliance two or three times a day, but the plus side is that I haven't had any leaks. I have got some drainable bags as back up in case I get diarhea.

What you experienced B sounded awful. As Penny said you did brilliantly.
Let us know how you get on tomorrow.
Bea

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I just read most of the messages on this board and it would seem that you all might be able to help me. I gave birth in August 08. I had a 4th degree laceration which was repaired immediately following the birth by the OB docs. A few days after being released from the hospital I broke down during one of my son's exams and had myself checked. It turns out that the surgery broke down and I had to have a sphincteroplasty. I waited 8 weeks from the birth and in October had the surgery. I was so excited to be done with gas passing vaginally and leaking poo. I could hardly wait! I had ability. He wasn't a colorectal guy, but a urogynocologist. Maybe that was my first mistake? Anyway, he did the surgery. It was supposed to be a same day procedure, but apparently I had some extra bleeding (as was evident when they removed the packing...ouch!) and a lot of pain so I stayed for three extra days. Everything was good for the first couple of weeks, but then I noticed that the gas was passing vaginally again, and the unable to get clean by wiping started to happen again. Every time I have a BM I have to shower. That is a great tip by the way, a surgeon who is a friend of the family shared it with me and it has literally been a saving grace. I bought a hand held shower head, and after I have a BM I put it on the most direct fastest pace I can, then clean out like a bidet. It's kinda gross to see what comes out, but at least it's not in my pants! The drawback to this is that I have to do it all the time. I am an 8th grade teacher, so not having access to a shower at school really makes me nervous. I had to leave the other day, because I needed to get home and shower! I saw my doc last week and he seems to think that I might have a fistula, and that the BM issues will resolve themselves in time...like a year.

Now, this leads me to my questions. 1. He wants to put me under to check and see if there is a fistula present. He has found some dimpling on the vaginal walls, but probing was to painful to continue. Is there another way to find out if there is a fistula present?
2. Should I be looking for a new doc? My dad says if he screwed up the first time why would I let him try again? I do have an appt with the colorectal guy at the same hospital, but my dad tells me that this is not really a second opinion because if they screwed me up, they'll never tell me.
3. If he does find a fistula, what are my options? He told me about some plug procedure with pig tissues, but I guess the colorectal guy at the same hospital (it's a really big name hospital) won't do this because he doesn't like the success rate. He also told me that I could have the sphincteroplasty again. Is there anything else? He also told me I could just let it be...yeah when you start having trouble holding in your poo then let's talk buddy! He told me that he wasn't very concerned about this!! I wish I could say the same!
4. I noticed in one post that one of you is a teacher as well. What do you do at school? How much should I tell my principal, and should I set up a plan of action to leave if necessary? Do I need to get a doc note to do that?

Sorry this is sooo long, but if just one of you could help me, I would be soooo in debt to you. I hate to say it but this is just such a pain in the ass! Ha ha, gotta have a sense of humor or else I just might cry all the time!

Thanks,
Milesmom

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Hi there-

I was just wondering if any of you could help me with some answers to my questions. First I will give you my story. I had a baby in August of 08 and suffered a 4th degree laceration. It was repaired right away, but broke down several days after I went home from the hospital. I had to wait for a month before I was seen by the urogynocologist, and then 4 more weeks before I could have my sphincteroplasty. I had that done in October. Prior to the surgery I was having to shower after each BM because some of it would get trapped in the hole between. I used a hand held shower head and put it on the direct stream and washed out the chunks. It was gross, but allowed me to get on with my day without feeling dirty. After the surgery I didn't seem to have that issue anymore right away. Then after about two weeks I noticed that I was passing gas vaginally and that I had to shower again to get clean after a BM. I saw my doc recently and he thinks that this will just take some time to heal. Right! When he has to wash out the poo from his butt, then we'll talk about waiting! This leads me to my questions.

1. Doc thinks I have a fistula, but wasn't able to probe all the way to find out. It was very painful. He says that they will have to put me under to find out. Is there another way to find out if I have a fistula?

2. If I do have a fistula, what are my options? He told me that I could do a plug with pig tissue and hopefully it would heal around it and take care of the issue, but he has only done this a few times. I am a little on the fence about this because I don't want to have the plug fall out and be back where I started. I also know that I could do the sphincteroplasty again, but I really don't want to go there.

3. Should I be thinking about getting a second opinion? I am already at a very highly respected hospital. Should I go to another?

4. I saw that someone here was a teacher. I am as well, and I am terrified of going to work with my 8th graders and having to leave in the middle of class. I have already had to leave school early to go home and shower. How do I retain some sense of "normalcy" while I am working? If there is anyone you just can't lose it in front of, it's 8th graders!

Thank you in advance to anyone who can help with any of these questions. I sometimes feel so alone in all of this. There isn't anyone here who knows what I am going through, and I don't really want to explain it to everyone. Even if I did, they wouldn't get it.

Milesmom

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Hi Milesmom,
Sorry to hear your story. You are not alone and although at any one time only a few of us post, plenty of women do suffer this problem.

I am unusual in that my fistula is not the result of childbirth but once you have an RVF it seems to be the same difference however you get it. The others currently posting may be able to say more about the childbirth aspect.

I'll give you my views from my experience - I hope they help. Firstly getting a diagnosis can be difficult even though what you describe is almost certainly a fistula. Secondly gynaecologists often are reluctant to diagnose them because they may feel partly responsible depending on what happened during delivery. So you need to see a colorectal surgeon for a number of reasons! Also, however the problem is caused it seems that the solution is from the bowel end primarily and also that there are risks associated with sphincter muscle control after surgery so you need a specialist who understands the rectum.

In terms of diagnosis you can have something called a barium enema which is followed by an x-ray - this may require some bowel prep but is a good method. Alternatively a colorectal surgeon may be able to either see it with a telescope up your back passage or even feel it with his/her finger. This is how mine was eventually confirmed after 2 MRI scans showed nothing. An endo -anal ultrasound also is good for showing the rectal wall muscles. They may want to do a colonoscopy under a general anaesthetic (I also had that). I would say any of these things is reasonable for your MD to suggest. The x-ray is good because it shows the path the fistual takes as well as confirming its presence.

ALthough a hospital reputation is good you need to check the doctor you are seeing - try googling them. I don't know what stats are available in the states (I live in the UK).

Sadly once you have poo coming through the fistula you almost certainly need surgery to resolve it. You may want to read the posts on this site and also quiz your surgeon closely before choosing surgery. Once you start you often end up on a long trail of surgery. I would do the same again - but there is a choice. Yours sound quite bad already so you may feel the decision is an easy one. My fistula did not affect me much at first but got worse.

On managing it, using sanitary towels is what I did then you can dispose of those and replace. Then nonfragranced wet wipes can help clean things better than toilet tissue alone. You can used immodium to make your stools firmer. You don't want to be constipated but firmer solid stools come through less in my experience. My consultant told me to use immodium.

Watch out for urinary tract infections and remember that they famously can have weird symptoms. I had a varible heart rate and feeling faint but no pain and they eventually realised it was a UTI.

Anyway good luck, keep posting, as it is horrible thing to tell others about it, and we here all know how horrible it is to see poo coming from the wrong place.

Meanwhile Penny and B - hope you are ok - what's your news?

Bea

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Thanks Bea!

I definitely will google my doc tonight! Thanks for all the suggestions. It really is nice to be able to "talk" to someone who actually knows what I am going through here!

Milesmom

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Hello everyone,
Hope everyone is doing okay. I went to my MD yesterday and she was pretty positive about everything. My infection is pretty much gone and she didn't anticipate the fistula returning or being affected by constipation, etc. which was a worry for me. My bowels are still not totally normal so I'm going to try to back off some raw veggies and fruit. I'm drinking my Benefiber now.
I'm still dealing with my sphincteroplasty results. Even though I had it a year and a half ago they are just being used for the first time. Milesmom, I agree with what Bea advised regarding wipes, etc. I think people try to train themselves to have a movement in the morning and/or evening and try to have a formed stool to cut down on the leaking. Those are things I'm dealing with too, which didn't happen before the surgery so it is all the more frustrating. I'm going back to work today with half a dozen panty liners, just in case. Wipes have become permanently a part of me and my pocketbook! It's so much to deal with and then with the fistula on top of it it can feel overwhelming. Try to take it a step at a time. Anyone who says they're not concerned about it doesn't sound too compassionate.
With my ostomy, we don't really know if it healed itself or if the rectal overlap procedure 'kicked in'. I guess it could possibly have healed itself.
Also, I remember B had a good relationship with her nurse at school who helped out with her ostomy but maybe she could be a support for you for your cleaning needs.
Take care, Penny

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HEY ALL!!!

So the news from my Dr. was decent...thank goodness--he said that it is still healing...that the repair is still intact...it is thin, but progressing! So, it is a waiting game. He said that I may still have leakage..., so Bea that may help to put you at ease...that it may leak while healing.... and he did not see a "hole" or fistula, so it must be really small, which is awesome! SO cross your fingers, for me, ladies! I go back in April, so basically I am playing the waiting game. SO chin up Bea, we'll get through this!

and overall, the leaking isn't a problem for me--the accident was due to a seat belt that must have made the pressure cause the bag to release through the filter-so I am being careful about that....

Penny-I am so happy that all is going well, you give us all the hope we need to keep going. You must be so happy, as well.

Milesmom-I wish you didn't have to be here, but welcome! How big is your fistula? One thing I want to tell you, that may be useful....is that I had a small fistula (needle point) and then had surgery that made it worse. There are no right or wrong ways to approach this. everyone is so different. But waitingfor awhile may not be a bad idea, if you can live with the fistula; it may heal over or be liveable. Mine occured after birth and before I had the first surgery, I waited 8 mos. and it did seem to shrink, but I went ahead with the surgery because I was told if it failed it wouldn't get worse. HA! It did. anyway, it is a fragile area....so surgery is risky too.

BE GOOD EVERYONE!!! B

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Hi All-

Thanks for the responses. While I certainly wouldn't wish this on anyone, I am glad that I am not alone!

B- I have already had the shpincteroplasty once and a repair of the perineum after birth. This would be the third surgery that I would have. I didn't have a fistula before these surgeries, they were created in the process. I knew it was a risk, and signed off on it, when I had the sphincteroplasty. I don't really know the size of the fistula because my doc isn't sure it is one, although he says it is really likely because of my symptoms.

Bea mentioned a barium enema could be used along with an x ray to see if a fistula was present. I had also heard of injecting ink through the rectum and wearing a tampon to see if any of the ink moves through. Are there any other ways to see if I have a fistula? I really don't want to go under if I don't have to, and probing was really painful.

Also, I had the sphincteroplasty in October and the pain went away pretty quickly, but now it seems to be getting really achy and sore again. Any ideas about why this might be happening?

I am so glad to have found you all. Best wishes to all of you and good luck in your own recoveries. I'll send my prayers your way!

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Milesmom- I had a barium enima...it was a simple test and non-surgical...and my pinhole (at the time) fistula was very obvious!!!!! B

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HI All,
B - I'm very pleased to hear your news. A reassurance to me too. Also good to hear you sounding so positive. I had a lot of bleeding again on Sunday night from both ends (which was because I passed some poo in the normal way which was the first time that's happened since I had the stoma). I don't think any came out the front but the beeding worries me. Anyway, only got to wait a week now for news.

Penny - also good news - so pleased for you - a beacon for us all!

Milesmom - Hope you get some answers soon. I've also heard of the ink and tampon idea which makes sense. It wouldn't have worked for me because my fistula strictly speaking doesn't come out in the vagina - it runs down the back of the vagina (between the vagina and the back passage) and comes out next to/behind the vagina - but within the labia - if that makes sense. It's the same difference really. Anyway keep us posted on your progress if you want to and especially if you feel unsure or down.

Best wishes all!
Bea

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Hey Bea! You know it is a flip-flop of emotions.., But now I am good. I can't wait to hear you get good news! I haven't had bleeding when the fecal matter slipped through vaginally.... But it is good you went to the br through the "traditional" route...that is good in that the repair is holding! I am trying to stay busy, so I don't think too much of something that I have no control of anyhow....

When is ur appt.? Soon, i hope.....keep us posted. It is so good to have people who understand...

Hey Penny and Milesmom!

Best, B

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Hi Ladies-

Just a quick note to say good luck with upcoming appointments, and thanks for the thoughts. They are very helpful!

Milesmom aka
Karin

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hey all,

Just a quick bag question--Penny, did you say at one point that you had leaking through the "filter" of your two piece convatec? Just wondering because i am wondering if i got a bad bunch...I had one leak with a while back, but it seems as if the filter is getting wet-like aoround the edges and I am just wondering if you ever had this happen.

All else is good...same old, same old waiting... been busy with work, working on my house a bit, my daughter and other endeavors-which is good for keeping my mind off all.

How is everyone else?

Best,
B

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Hi everyone,
B, I want to answer your question but I used a one piece that leaked before I got a convex bag. I've never used a 2 piece so never had a filter. Sounds like a question for your wound care RN. I'm glad you're keeping busy and attending to 'life' and making this very secondary.
Milesmom, I just wanted to make you aware of another health forum, I Survived a Sphincteroplasty. I think people on that site could help you with your sphincteroplasty questions. People have had them for different amounts of time and with different amounts of success. I am still getting used to mine. When I feel discomfort it usually means I'm loose and feeling the irritation. How long has it been for you since the surgery?
Bea, how are you doing? Wishing we're all healing more each day.
Penny

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