Hi all,
I went back to the CRS today and he says I need another repair - my 4th. He said he would look first and then decide but all the evidence is that it needs more help to heal ....
No date for the op yet .......... To be honest if this is needed then I would rather he got on and did it so I am resigned to it if not happy exactly...
B - fingers crossed yours.
Bea
I went back to the CRS today and he says I need another repair - my 4th. He said he would look first and then decide but all the evidence is that it needs more help to heal ....
No date for the op yet .......... To be honest if this is needed then I would rather he got on and did it so I am resigned to it if not happy exactly...
B - fingers crossed yours.
Bea
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Oh Bea, I wish you had better news. Is this 4th try going to be any different than the first 3? Are you confidant in his ability to do a good job? This has been such a long haul for you. I certainly hope this is the last time. What kind of surgery will it be? How long is recovery time? We're all rooting for you. Penny
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oh Bea, I am so sorry that you need to do another-ugh, these things are so frustrating. Did he tell you what he was going to do? Is it smaller? I hear you on wanting him to just do it and get it over with... I am thinking of you and sending you healing thoughts... We'll get through this...how is everything else? I have been busy with the little one and life and getting my students ready for state tests....and i hope to get my garden done this weekend. ha.. Be good okay!!!
Penny-did you get on the bike yet??? ha.
Everyone-be well...
CJ- i hope my post didn't scare you...b
Penny-did you get on the bike yet??? ha.
Everyone-be well...
CJ- i hope my post didn't scare you...b
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Penny and B,
Thank you very much for your posts. I don't feel too bad. In fact I actually had a BM yesterday (very small) which happened with very little bleeding and nothing through the fistula! So maybe things are better than I thought.
Unfortunately my consultant was very busy - about to go into emergency surgery - when I saw him so I didn't get much info like usual. I asked if it had got smaller but he was a bit evasive - I'm not sure if that means 'no' or just that he didn't have time.
You are both so good to me - and it really helps.
Bea
Thank you very much for your posts. I don't feel too bad. In fact I actually had a BM yesterday (very small) which happened with very little bleeding and nothing through the fistula! So maybe things are better than I thought.
Unfortunately my consultant was very busy - about to go into emergency surgery - when I saw him so I didn't get much info like usual. I asked if it had got smaller but he was a bit evasive - I'm not sure if that means 'no' or just that he didn't have time.
You are both so good to me - and it really helps.
Bea
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Hello all-
It has been a long time since I have posted. I have been so busy lately, I can't even function!
Bea and B- I was sorry to read about the unpleasantness for you both! Hope everything works out for you...I will keep my fingers crossed!
As for me, the road has been pretty bumpy lately. I have been pretty sick, and with that comes the fear of infection. I had to stay home a few days the week before our school vacation, and one of my co-workers jumped on my back. She told me that I was milking my issues. She didn't even know what they were. She went on to say that it was ridiculous that I would take a whole sick day for a doctor's appointment, and that when she gets a mamogram, she comes back to school so why couldn't I? I gave it some thought over vacation, and decided to tell her the whole story, details and all. When I got back this past monday and told her what was going on, she backed way down and told me that she was sorry. Well, maybe next time she'll think before she jumps down people's throats...not likely, but oh well.
And of course there has to be more bad news...My husband got laid off, which wouldn't be that bad if we weren't on his insurance. I can pick it up, thank god, but it's gonna cost us money we really don't have now. Ugh!
Finally, a question. I always have normal periods, but lately (the last three months) I have had bleeding between periods, and bleeding around ovulation. This has been coupled with pain (still), some low grade fever (not everyday), and poo in my vaginal discharge. i have also had a harder time holding in my BM's than ever before. Do you know if these things are all linked? Gosh, wouldn't it be nice to get on here and say, "I found the magic cure..."
Hope all of you are doing well mentally, physically, and emotionally. I wish i was!
Karin
It has been a long time since I have posted. I have been so busy lately, I can't even function!
Bea and B- I was sorry to read about the unpleasantness for you both! Hope everything works out for you...I will keep my fingers crossed!
As for me, the road has been pretty bumpy lately. I have been pretty sick, and with that comes the fear of infection. I had to stay home a few days the week before our school vacation, and one of my co-workers jumped on my back. She told me that I was milking my issues. She didn't even know what they were. She went on to say that it was ridiculous that I would take a whole sick day for a doctor's appointment, and that when she gets a mamogram, she comes back to school so why couldn't I? I gave it some thought over vacation, and decided to tell her the whole story, details and all. When I got back this past monday and told her what was going on, she backed way down and told me that she was sorry. Well, maybe next time she'll think before she jumps down people's throats...not likely, but oh well.
And of course there has to be more bad news...My husband got laid off, which wouldn't be that bad if we weren't on his insurance. I can pick it up, thank god, but it's gonna cost us money we really don't have now. Ugh!
Finally, a question. I always have normal periods, but lately (the last three months) I have had bleeding between periods, and bleeding around ovulation. This has been coupled with pain (still), some low grade fever (not everyday), and poo in my vaginal discharge. i have also had a harder time holding in my BM's than ever before. Do you know if these things are all linked? Gosh, wouldn't it be nice to get on here and say, "I found the magic cure..."
Hope all of you are doing well mentally, physically, and emotionally. I wish i was!
Karin
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Hi Karin,
Good to hear from you again. You should post (or not) as often as you want to or have time to. I sometimes just look at the posts and don't contribute all the time. I am sorry that you had such an unsympathetic colleague - some poeple don't think that there may be more behind what they see. And why should you have to explain? Still it sounds as though they'll leave you alone for now.
I am sorry to hear about your husband - there seem to be so many things to worry about just now - and when you have things like your health to worry about too it makes things even more complicated.
Re your question it is difficult to be sure. Most of the time my fistula did not bleed but if you have any sort of open wound inside then it may be that which is bleeding and causing the fever. It sounds to me as though you might need to be checked out by a doctor and possibly on antibiotics. In terms of control the others who post might be able to help. Becasue my RVF was created not by child birth the sphincter muscles do not seem to be affected. But I gather from others that this has affected them and maybe control is an issue.
From what you are reporting you sound as though your body is coping with a lot - I hope things improve for your but I really think you should see a doctor - even if just your GP.
Bea
xx
Good to hear from you again. You should post (or not) as often as you want to or have time to. I sometimes just look at the posts and don't contribute all the time. I am sorry that you had such an unsympathetic colleague - some poeple don't think that there may be more behind what they see. And why should you have to explain? Still it sounds as though they'll leave you alone for now.
I am sorry to hear about your husband - there seem to be so many things to worry about just now - and when you have things like your health to worry about too it makes things even more complicated.
Re your question it is difficult to be sure. Most of the time my fistula did not bleed but if you have any sort of open wound inside then it may be that which is bleeding and causing the fever. It sounds to me as though you might need to be checked out by a doctor and possibly on antibiotics. In terms of control the others who post might be able to help. Becasue my RVF was created not by child birth the sphincter muscles do not seem to be affected. But I gather from others that this has affected them and maybe control is an issue.
From what you are reporting you sound as though your body is coping with a lot - I hope things improve for your but I really think you should see a doctor - even if just your GP.
Bea
xx
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Hello Ladies,
Sorry to hear about your problems Karin. No one except my husband knows about my fistula. I haven't told anyone that I might have surgery this summer. I am going to tell my family once I know for sure I am going to have the surgery. I am not going to give them all the details though as to why. I am just going to tell them things haven't been right down there from having children. It is just so personal!
I do have my colonoscopy coming up on May 13. I guess there's really nothing to worry about with that. I am glad he wants to do that and that he can get a good look at me before doing surgery.
If I have the surgery, and then decide to have a 3rd child someday, do you all think a C-section will be ok? Has anyone ever had a c-section?
Beegirl- before you had your surgery, what were your symptoms for a fistula? Was it only gas like me? I am fearful when I read your story because you sound similar to me, however I agree with what you said... some people can get fixed the first time. It's just so scary to think these things can't get fixed the first time. I feel horrible for some of you that have had to have surgery after surgery. Beegirl, what state do you live in?
Hope you all are enjoying your weekend!
CJ
Sorry to hear about your problems Karin. No one except my husband knows about my fistula. I haven't told anyone that I might have surgery this summer. I am going to tell my family once I know for sure I am going to have the surgery. I am not going to give them all the details though as to why. I am just going to tell them things haven't been right down there from having children. It is just so personal!
I do have my colonoscopy coming up on May 13. I guess there's really nothing to worry about with that. I am glad he wants to do that and that he can get a good look at me before doing surgery.
If I have the surgery, and then decide to have a 3rd child someday, do you all think a C-section will be ok? Has anyone ever had a c-section?
Beegirl- before you had your surgery, what were your symptoms for a fistula? Was it only gas like me? I am fearful when I read your story because you sound similar to me, however I agree with what you said... some people can get fixed the first time. It's just so scary to think these things can't get fixed the first time. I feel horrible for some of you that have had to have surgery after surgery. Beegirl, what state do you live in?
Hope you all are enjoying your weekend!
CJ
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Bea-You guys make me feel so much better too!!! We will get through this--the waiting just stinks....
CJ-Prior to my surgery, I had gas and some fecal matter sometimes, but that was getting better with time.... I live in NY...One thing I would ask for, if possible, is a vaginal repair-layer approach--instead of the flap--just a thought...I had the falp first and I do not think it was the right surgery for me-It is not the easiest thing to talk about--Hang in there and ask away...
Penny-hey-got the garden in!!!!!!Yeah...
Karin-hey-sorry times are tough...it always seems to hit at once...
be good ladies!b
CJ-Prior to my surgery, I had gas and some fecal matter sometimes, but that was getting better with time.... I live in NY...One thing I would ask for, if possible, is a vaginal repair-layer approach--instead of the flap--just a thought...I had the falp first and I do not think it was the right surgery for me-It is not the easiest thing to talk about--Hang in there and ask away...
Penny-hey-got the garden in!!!!!!Yeah...
Karin-hey-sorry times are tough...it always seems to hit at once...
be good ladies!b
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Hello everyone,
Bea, I"m glad you're able to see your situation without being overwhelmed by it. Keeping your eye on the eventual goal can be hard but something I always tried to do.
Karin, I can identify with your financial hardship. My husband was laid off a year ago this last April. Luckily he continues to get benefits while going back to school for more training. But I've taken over the insurance which is a huge part of my small social worker salary. WE also had to have a discussion about what kind of insurance to get. If we had to go out of network to get the fistula repaired would we be able to afford it? We're on the older side, too, so getting a job will be a challenge for him, I think, when school is over. I do think you need to see an MD with those symptoms. They may or may not be related.
Congrats to b for getting in your Garden. I got my bike out of the bike shop yesterday and found I can't lift it onto the bike rake. Eek. I went to bed last night with a strained back. Have to do some back strengthening exercises or trade in for a lighter bike. So for now I'm riding on my not so long street.
I'm trying to adapt to my own sphincter issues. More good days than bad so am very happy about that. I took a long walk the other day with no problems. Hurray.
Penny
Bea, I"m glad you're able to see your situation without being overwhelmed by it. Keeping your eye on the eventual goal can be hard but something I always tried to do.
Karin, I can identify with your financial hardship. My husband was laid off a year ago this last April. Luckily he continues to get benefits while going back to school for more training. But I've taken over the insurance which is a huge part of my small social worker salary. WE also had to have a discussion about what kind of insurance to get. If we had to go out of network to get the fistula repaired would we be able to afford it? We're on the older side, too, so getting a job will be a challenge for him, I think, when school is over. I do think you need to see an MD with those symptoms. They may or may not be related.
Congrats to b for getting in your Garden. I got my bike out of the bike shop yesterday and found I can't lift it onto the bike rake. Eek. I went to bed last night with a strained back. Have to do some back strengthening exercises or trade in for a lighter bike. So for now I'm riding on my not so long street.
I'm trying to adapt to my own sphincter issues. More good days than bad so am very happy about that. I took a long walk the other day with no problems. Hurray.
Penny
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My barium test did not show a fistula, but they only did the liquid part of the test (not the second, air part). I still have only gas passing thru at this time, but it is happening more often. At first (2 months ago), gas would pass thru the vagina maybe 10 to 30 percent of the time. Now it is thru the vagina at least half of the time. Also, there was never any noise with the vag. gas at first. Since my last cycle, vag. gas now is audible (not all the time though, thank goodness). I made an appt with a colorectal surgeon (first appt next week) to discuss things and weigh my options. I think i need to have an ultrasound or something else to try to find the fistula. Another major problem i've been having is this: i have zero percent control of gas (meaning none at work, shopping, etc). I do have bowel control, but with an extreme urgency (meaning an accident could happen). My obgyn of course volunteered to to repair the sphincter to help with control (no thanks, i want a specialist).
So, question is this, with poor control of gas (i'm only 32, so i assume over time bowel control will worsen also) and having signs of a fistula, is it possible to have sphincter repair without fistula repair? Would this risk an infection that could make my assumed small rvf get larger or infected and cause major problems?
So, question is this, with poor control of gas (i'm only 32, so i assume over time bowel control will worsen also) and having signs of a fistula, is it possible to have sphincter repair without fistula repair? Would this risk an infection that could make my assumed small rvf get larger or infected and cause major problems?
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I got the results of my barium test--no fistula found. They only did the liquid part of the test, not the air part even though my sypmtoms are only gas right now. I see a crs next week for hopefully more tests.
Right now, I have zero control over any gas (vag. or regular) whether I'm at work, shopping, exercising, etc. This is very bothersome and has gotten worse over the last 2 months. Also, vag. gas had no sound at first, but now it does. I also have extreme urgency with bowel movements.
I know I had sphincter damage with my 4th degree tear and am obviously having problems with it now. Does anyone know if sphincter repair ups the risk for infection/enlarging a fistula? I still think i have a small fistula since gas now passes thru the vag. 50 % of the time now. Anyone know about sphincter sugery without trying to touch the fistula? I really don't think i would want to chance a small rvf getting worse. Also, any experience with sphincter repair and recovery time
Right now, I have zero control over any gas (vag. or regular) whether I'm at work, shopping, exercising, etc. This is very bothersome and has gotten worse over the last 2 months. Also, vag. gas had no sound at first, but now it does. I also have extreme urgency with bowel movements.
I know I had sphincter damage with my 4th degree tear and am obviously having problems with it now. Does anyone know if sphincter repair ups the risk for infection/enlarging a fistula? I still think i have a small fistula since gas now passes thru the vag. 50 % of the time now. Anyone know about sphincter sugery without trying to touch the fistula? I really don't think i would want to chance a small rvf getting worse. Also, any experience with sphincter repair and recovery time
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:-( Hi I am tired of feeling all alone with a rectovaginal fistula ! have been dealing with repairs for almost two years now with no sucess! I am now the proud wearer of a colostomy bag! I have had four repairs none of which where sucessful. i have had every test to rule ibd! Sometimes i just feel so angry!!!! Does anyone have a sucess story??? Any good advise on how to keep your head up??? Any ideas to stop the internal pain??? As for who ever wrote the alcohol mix try using peroxide instead 50/50 water/ peroxide it is not as drying. mel
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Dear Guests x2,
It sounds as though you are both having a time of it. For Guest 1, others may better be able to help as my RVF was not the result of childbirth and as far as I can my sphincter muscles are not affected. I belive an ultrasound will eb an excellent source of info for the CRS and lok at your muscles etc and hopefully spot the RVF. The general view seems to eb that you go to a specialist in bowel matr=ters - so not a gynae.
Guest 2 - you have my cnmplete and utter sympathy. I also have a bag and I am about to have my 4th repair. I feel that despair too - will it ever end? The stoma was supposed to be thing that worked but still no joy with repair 3. Plus apparently the RVF can even recur after the reversal. Nightmare! Anyway, Penny is our current beacon of hope will post soon I'm sure. B (beegirl) and I are in your situation but I sense that Beegirl's repair may be progressing better than mine (i keep bleeding every time the muscles contract to pass a BM). I am sure there have been other success stories who of course don't post now that they are sorted out. The doctors do keep telling me that they will sort it out eventaully and surely they would be kind enough to stop the torment if not but having faced the worst case scenario (stoma) and the thing still won't heal - what does one do?
Most times though one gets on with life and certainly the longer days and warmer temps help a lot. Hope you are feeling better.
Bea
It sounds as though you are both having a time of it. For Guest 1, others may better be able to help as my RVF was not the result of childbirth and as far as I can my sphincter muscles are not affected. I belive an ultrasound will eb an excellent source of info for the CRS and lok at your muscles etc and hopefully spot the RVF. The general view seems to eb that you go to a specialist in bowel matr=ters - so not a gynae.
Guest 2 - you have my cnmplete and utter sympathy. I also have a bag and I am about to have my 4th repair. I feel that despair too - will it ever end? The stoma was supposed to be thing that worked but still no joy with repair 3. Plus apparently the RVF can even recur after the reversal. Nightmare! Anyway, Penny is our current beacon of hope will post soon I'm sure. B (beegirl) and I are in your situation but I sense that Beegirl's repair may be progressing better than mine (i keep bleeding every time the muscles contract to pass a BM). I am sure there have been other success stories who of course don't post now that they are sorted out. The doctors do keep telling me that they will sort it out eventaully and surely they would be kind enough to stop the torment if not but having faced the worst case scenario (stoma) and the thing still won't heal - what does one do?
Most times though one gets on with life and certainly the longer days and warmer temps help a lot. Hope you are feeling better.
Bea
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Tired. Sorry- I too, have a ostomy-ileostomy- got an rvf after my daughter was born now 20 mos. ago....I have had two repairs, first failed made it huge-second--made it smaller, but not sure if it is gone...other ladies here have had success....penny. also write to Wendy Powell who does ummm...the fistula page--she is great.... she had a success after many a failed op. as well. there are successes...this sucks so bad, I know...I am so sorry you are in this boat. what repairs have you had? what is your dr. saying is next? I am on lexapro-it has helped me go on. I live a busy life. work, daughter, writing, husband, gardening...I am in my early 30's...i try to keep positive, you know... just enjoy the moment-i keep reminding myself-everyone poops, i just poop out of my stomach ugh...ha. i keep mentally busy.... keep writing, we are here.
BEA-how r u????
Penny-get on that bike....
as for me, i am jsut waiting....cross your fingers for me ladies..i cross mine for all of you. B
BEA-how r u????
Penny-get on that bike....
as for me, i am jsut waiting....cross your fingers for me ladies..i cross mine for all of you. B
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Hi everyone,
I have been in the same boat as B and Bea and Guest 2. I had an ileostomy for over a year and a half and had a failed flap surgery. A sphincteroplasty caused my fistula but I have read where a number of posters on different sites have had a fistula repair and sphincteroplasty together. A site entitled I Survived Sphincteroplasty can give you a lot of info on it. I was scheduled for ANOTHER sphincteroplasty when they discovered the fistula had healed itself. I wonder if people wait long enough that would happen to others as well. I've been told that's unlikely but it does feel if it happened to me it could happen to others. The sphincteroplasty can leave you with residual issues. Everyone is different. I'm trying to get back to a better 'normal' now. There are ostomy sites that make you feel lucky that yours is temporary and not the result of a major illness. Still, it is so hard to deal with. Easy for the medical profession, it seems, to tell you it's no big deal but you can find people with more compassion and understanding that help with the emotional support you need. I, too, am on Lexapro, have found it very helpful even now.
Thinking of you Bea. Trying to get more motivated for that bike riding, b. Today is my oldest daughter's birthday, 31. Hard to believe. She's running 10K's. Time to take her lead and get fit!
Penny
I have been in the same boat as B and Bea and Guest 2. I had an ileostomy for over a year and a half and had a failed flap surgery. A sphincteroplasty caused my fistula but I have read where a number of posters on different sites have had a fistula repair and sphincteroplasty together. A site entitled I Survived Sphincteroplasty can give you a lot of info on it. I was scheduled for ANOTHER sphincteroplasty when they discovered the fistula had healed itself. I wonder if people wait long enough that would happen to others as well. I've been told that's unlikely but it does feel if it happened to me it could happen to others. The sphincteroplasty can leave you with residual issues. Everyone is different. I'm trying to get back to a better 'normal' now. There are ostomy sites that make you feel lucky that yours is temporary and not the result of a major illness. Still, it is so hard to deal with. Easy for the medical profession, it seems, to tell you it's no big deal but you can find people with more compassion and understanding that help with the emotional support you need. I, too, am on Lexapro, have found it very helpful even now.
Thinking of you Bea. Trying to get more motivated for that bike riding, b. Today is my oldest daughter's birthday, 31. Hard to believe. She's running 10K's. Time to take her lead and get fit!
Penny
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