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Hello Bea and B.

I am getting ready to go into surgery as I write this. I received a quick surgery date after last Thursday's was canceled. I'm glad of that. Trying to stay positive and assume the best rather than the worst. All those memories of stuff coming through the wrong places day and night. Hoping those days are gone for good.

I'll let you know how things are going when I get back from the hospital. I'm hoping that will be sooner than later. Hoping for a bed with a bathroom within hopping distance! I imagined 2 people with reversals in the same room dashing for the jon at all times of the day and night.

Stay well, enjoy each day. Those have been my motto's of late. Thanks for all your good wishes.

Penny

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Penny.

Yeah...I will be thinking of you...this seems so fast; I can't be happier to hear that this is happening. When you read this, you will be ostomy-free. Congrats.... Please let us know how it goes. You give us all hope...

Best B

Bea,

How are you doing? I'm doing ok....

Be well all. B

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Hi Penny,
Really pleased for you. I'll be thinking of you! Very best of luck and let us know what it is like etc as hopefully I'll be going through it too one day.

Here in the UK we've had a touch of snow and everything has come to a halt! But it is beautiful .....
Hi B too - I hope you are OK. I couldn't find this thread earlier and started a new one so that'll confuse everyone! Anyway I had a question which I guess Penny won't see now for a bit but B you might have had this? .....

For anyone who has had a repair done along with a colostomy or ileostomy, do you ever get bleeding from the front (vaginal) end or back passage? My repair was done 4 months ago so generally doesn't bleed at all but it hasn't completely healed yet from the x-ray evidence. My rectum had a real push again the other day and quite a lot of fresh blood came out from the front end and a little from the back. It was clearly directly related to the muscle contractions and I don't have any period. It stopped quite quickly but I am worried that it is tearing the repair .... is this likely?

Any views welcome. AS ever it is just so nice being able to share these things - I panic on my own when these things happen....
Bea

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Bea,

Good question. I am ummm...almost two months in. Mine is there still, as well, like we have discussed. I do get a tiny bit of blood (during my period) via my rectum...and lately do get discharge (mucusy brownish) that comes out vaginally...and I am pretty sure that is not the best thing, but it may be still healing, like my dr. said...so hopefully this will ease your stress a bit... Def. ask your dr. Let me know if anything comes of it, I am interested. Penny may answer anyhow when she gets back from surgery. B

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hey all.

Penny- I keep checking to see if all is ok, thinking of you...

Bea- haven't heard from you either, hope all is well. I had a bit of sadness today, as again (had urge) and fecal matter came out both ways...ugh, but I don't believe the whole repair is coming apart...but it is most definetly there. I am sad. What a rollercoaster ride. I go back in Feb. at the end. How are you????

Be good everyone. B

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Hello everyone,

I wanted to post and let you know how I am doing. I have been home from the hospital since Friday, pm. I was so glad to leave the hospital. I really don't make a good patient. I hate being dependant on others to meet my needs and having them tell me what I can and can't do. Anyway, I try to B+ but just pushed to leave asap and that happened!

My surgery was over an hour and not too eventful, I guess. I was surprised that my reconnectin was done with staples, thought it would be sutured. I'm not good with surprises but am doing okay with this. I have been lucky in the pain department. The first 24 hours I had something but after that it's been nausea and cramps and trying to stay hydrated. Imodium is the pill of the day to quell the diarhea that was expected. We'll see how long that goes on for. My suggestion there is to have them give you mesh underwear and pads asap and don't rely on the call button which means very little in the hospital I was at.

My MD is presently saying that if I do still have a fistula that it might be livable if it only exhibits symptoms of gas or when I'm sick with diahrea. At first I was kind of shocked. After a year and a half of trying to get rid of it, even if most of it was just waiting, my goal has always been to get rid of it. But actully, after this reversal, and getting my movements back to normal and being able to be continent a gassy fistula seems like something I could live with. I'm still trying to get it settled in my head. I am just so not wanting anymore sugeries. And I feel like my real problems started with my first one i hate to take more chances. We'll see.

I'm hoping not to discourage anyone. My fistula did get smaller if it didn't heal all together which is great. The reversal is a real surgery and the recovery needs to have its time. NOt like my first MD stated, "We'll pop it out and then just pop it back in". My colon started working very quickly which was good, too.

Bea, I just wanted to mention, I'd see your MD about any new bleeding. It could be typical, or not. When i had an enema done I had bleeding for months which made me think they pushed into something more than expected but it eventually stopped.

Thank you all for your thoughts and wishes. No one knows quite what it's like unless you're living it.
Penny

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Dear Penny and B,
I've been looking out for posts and then the thread disappeared for a while and I didn't know how to find it. I'm OK - the bleeding hasn't recurred but maybe I should still talk to the doctor - on the other hand what can he do? either it is tearing or it isn't ....

B - I'm so sorry to hear about the urge and the faecal matter from both ends - it is early days though and provided the urges don't happen too often it can still heal I'm sure - think how much better it is than it working everyday and contaminating the fistula everyday. I wonder they ever try a repair without the ostomy.

Penny, delighted to hear that you are OK and making very good progress. SOunds as though the surgery has gone well. You are right your main focus is recovering from the surgery. I am interested that you have diarrhea at first as I've always gone very constipated after surgery - they tell me it is the pain killers. Anyway - please let us know what it is like as you go on - especially how quickly you become continent and off the immodium. B and I both have this to look forward to and you are bravely leading the way! Not pleasant I'm sure but girl you are doing great by all accounts.

On the staples issue - that is how I thought they did do the reconnect so I'm sure all is well. Is there a reason I don't know of why staples are not so good?

Take care both - and anyone else reading. You are such good friends across the ether. As PEnny says no one else knows what it is like unless you are living it and the emotional traumas are such a wind up as every step seems not to be simple.

Bea

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Hello All, So I had my RVF repair on Feb 2nd.. it was a flap repair not on the vaginal side. Here I am a week and a half later and starting on Monday I was passing Gas through my vagina, and now I'm passing poo through my vagina.. at first I thought I just wiped wrong,but after more in-detail looking..it wasn't that.. I called my dr. and waiting for a call back. Hopefully first thing in the morning. What do you ladies think? Is this normal.. I mean I know its not normal.. but normal for just having a repair?

Would like any info.. Thanks, Dannette

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Hi everyone,

Dannette,
Sorry to hear you have some concerning events. I know B had some poo after her repair (though a different kind) and she still received good news from the MD. I really don't know about yours. I had the rectal flap done a year ago in November but it seemed to give way in June when some of the remaining barium enema came through. Then I was referred to another doctor for the vaginal repair. If it is bad news I know just how you feel. It happened just a week before I was scheduled for my reversal so it felt like i really fell behind. After a year and a half of doing nothing it either healed itself or my Md said maybe the flap 'took'. I'm not sure about that. Let us know what the MD thinks. It may be better news than you think.

So far it appears my RVF is either dormant or nonexistant. Hurray, either way. I am now focused on figuring out how to use my sphincter muscles which is where I started in my journey. I'm off Imodium and suddenly worrying about constipation. My 'feeling' is quite different and I can't tell, really, if I have to move my bowels or not. Another challenge but hopefully, doable. My wound is healing, though I'm anxious for the MD to see it as there are a couple of icky spots I'm not sure are healing as expected. All in all, the reversal was a lot less involved and less painful, etc. than getting the ostomy.

Hope you are all doing well..
Penny

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Hi Danette
My previous two repairs without a colostomy had evidence of failure about the same time as you are showing it. Never say never, but once the bad stuff gets in the fistula, it is the chronic infection which is associated with it because of the bacteria in the gut etc which prevents healing (apparently). I'd have to say prepare yourself that it hasn't worked. Do try taking immodium if your stools are at all soft as firm stools are less likely to come through the hole giving the wound a chance. You don't want to be constipated either as straining also doesn't help.

If you get any pain or fever get yourself to the hospital or GP (not sure what you call them in the states) asap or phone as I left it much to long after my first repair went wrong and got infected. It is difficult to give positive news as my experience wasn't/isn't good - I don't want you to get too down, all I can say is if you do have to have an ostomy it really isn't so bad, I got down about it but if it is the way to make the thing heal then it may seem worth it.

Penny,
Great news from you - hope for us all and I need it.

Today has been a bad day. I've had brown coloured mucus and small spotes of poo coming out of the fistula (front end) and that is even with a stoma - I feel so down. Why won't it heal? I have phoned my consultant and left a message. Like Danette hoping to hear tomorrow.

B - How are you doing?

Best wishes to you all.

Bea

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HEY LADIES!

Penny-yeah such great news... How big was your fistula when it was at its worse? Keep us posted....

Bea-oh, I am so sorry you had a bad day!!! It is the worse when you have a set back. I had the same thing had several times since my repair... I had some gas today...but, I think of Penny and am hopeful, it takes time and a lot of energy to cope with all of this healing, as well as the ups and downs. Wendy (RVF network) also healed over time after a "failed repair." I will be thinking of you!

Danette-ugh...sorry to hear that you had a set back, as well. I had a flap repair that failed about a week after the surgery. My original fistula was small and before I had the surgery I asked if it could make it worse. Needless to say, he said no, and I was like ok then let's try...ha. it got huge.... finger fit through size. Anyway, it sucked, of course, so I opted for the ileostomy to aid the healing process this time. I too, have had set backs, but am hopeful. I don't think it is an easy fix for many women...you are not alone. And you really never know with these things--everyone has different stories. And like Bea said the ostomy isn't that bad--I have a 18 mo. year old daughter (my fistula came after her birth-) and work full-time as a teacher...and I am doing really well. SO NOT THAT THIS IS IN YOUR CARDS, BUT THE WORSE CASE< IS NOT THE END OF THE WORLD. my second repair was done vaginally--it is at least much smaller as of now--and I hope it heals over. Please ask any questions, etc..We understand! Best, B

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Hi B,

I just wanted to answer your size question. I'm afraid I never asked the size question. After my sphincteroplasty I became impacted and after an enema, stool started coming out of the manmade wound the MD had made for 'drainage' from the surgery as well as my vagina. That MD never wanted to do any tests to see if it had healed or not but wanted to go straight for the reversal. Which is when I moved on to another MD with at least 3 doctors telling me I still had the fistula and shouldn't have the reversal. I know the fistula had to be good size at first with the amount of material coming through. So I"d say there's hope for people with larger fistulas, too. I think the body heals as well as it can and tries to get back to 'normal'. I have to say though, i was so surprised to find it actually had healed. I'm still wondering. So far so good with me. When I have diarrhea, I have to say I don't check to see where it's coming from. The rest of the time I know it's coming through its normal 'portal'!.

How are you doing? Sounds like things are going well for you. Once the details of the ostomy get straightened out I think things become more calm. Reading about people who had to have them permanently gave me courage to deal with it a bit more.

take care,
Penny

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Penny, SO good to hear from you, Penny, and to hear things are still going well. How long did you have the ostomy for--it was over a year? I have a terrible memory... I am doing ok. I have more good days than bad. The ostomy isn't fun, but really it isn't the end of the world, as you know. I am still hopeful about the healing. I go back to my Dr. next Monday, so I will definitely keep everyone posted. I know it is still there, but will be more likely to heal with the ostomy there. I am able to put the appliance on well enough now that leakage isn't a scary issue, like it was before. Actually today is my fourth day with this appliance, so that is really good. During the week, I always change it on day 3, to make sure.
Other than that I am glad to be healthy and that my daughter is healthy. My husband is supportive...which is great. I hope to get well, so that if I do want to I can have the option of having another child...(never again vaginally) ha. Be good. B

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Hi B and Penny,
Hope you are both well.

Good luck B for your appointment. It is early days for you too on the ostomy front so I guess we both have a bit of a wait before the fistula will heal. I left a message with my hospital about the mucus coming through and I have an appointment for 4 March so they can check that nothing is too wrong. I think they'll just say to keep waiting.

Penny, Hope you are feeling better every day. Keep us posted.

Keep well all.
Bea

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Hello Everyone,
I'm glad to hear people are doing okay and looking at the positive. I'm trying to do likewise. I'm getting used to my operated on sphincter muscle which isn't all positive but as long as it's 'doable' I'm happy. I have problems now I didn't have before so I"m not sure I've actually come out 'ahead'. I really feel I should have done many other things before doing the surgery, Kegels, diet changes, etc. could have been all I needed. But this is what I have. I have not experienced anything through my vagina though on some occasions I've experienced some pressure there. I haven't had sex yet because I am still worried that I might open things and that's on my list of questions for the MD. I see her on Monday. I was unlucky enough to get a fungal infection at the wound site so went in early for meds for that. I think the bandage strips were getting damp and couldn't really dry properly. But the meds are really helping so i think it'll just be a matter of time before that's gone.
Good luck B on your appointment and to you too Bea. I just read somewhere that a patient made 3 copies of the questions he had and gave them to his friend/family who went with him and one to the MD, too, which he appreciated. I'm thinking about it!
take care
Penny

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