Hi all-
I have been feeling rather downtrodden lately. I am unsure of whether or not I want to continue to look for help with this. I still have gas passing, and stool sometimes, but when I think about having another surgery...I don't know. And thinking about going to see another person who can't find the fistula and thinks I am crazy or just attention seeking just seems so not what I want! I have been in so much pain lately. I don't know. I have also had three months of blood, bright red, during ovulation. I have no idea what that is all about, but I never had it before Miles was born. It's not a lot, just enough to be present so that I can see it. I'm not sure if it's related to ovulation, or the healing process after my surgery. Oh, I am so over all of this. I tried to post earlier, but it hasn't gone up yet, so if this repeats...sorry! I had to log-in again. Even the computer Gods are against me!
Hope you all are doing better! Bea- been thinking about you! Hope you are doing well! Penny- I too would love to get back on my bike. I was actually going to try and ride a 180 mile race this year, but began thinking that that might be a little much for the time being! If you find a good seat, let me know! B- Hope the doctor's appt goes well for you! I will be thinking about you!
Talk to you all soon!
Karin
I have been feeling rather downtrodden lately. I am unsure of whether or not I want to continue to look for help with this. I still have gas passing, and stool sometimes, but when I think about having another surgery...I don't know. And thinking about going to see another person who can't find the fistula and thinks I am crazy or just attention seeking just seems so not what I want! I have been in so much pain lately. I don't know. I have also had three months of blood, bright red, during ovulation. I have no idea what that is all about, but I never had it before Miles was born. It's not a lot, just enough to be present so that I can see it. I'm not sure if it's related to ovulation, or the healing process after my surgery. Oh, I am so over all of this. I tried to post earlier, but it hasn't gone up yet, so if this repeats...sorry! I had to log-in again. Even the computer Gods are against me!
Hope you all are doing better! Bea- been thinking about you! Hope you are doing well! Penny- I too would love to get back on my bike. I was actually going to try and ride a 180 mile race this year, but began thinking that that might be a little much for the time being! If you find a good seat, let me know! B- Hope the doctor's appt goes well for you! I will be thinking about you!
Talk to you all soon!
Karin
Hi Karin,
I'm so sorry you're feeling so frustrated with all of this. It is certainly understandable. Only you can decide what you can tolerate and what you can't. I felt the same way after my sphincteroplasty. I went from that to the impaction surgery, then those barium enema's. and then the ostomy. It was all too much. We have to pace ourselves, I think, and do things in our own time. If you have no reason to rush than maybe you can spend more time making the decision. You do have symptoms, the bleeding and any unusual pain I'd tell your GYN about. Working with an MD you have faith in helped me a lot and my antidepressant took away a lot of my anxiety and I at least felt better overall. Are you back to work? I think I remember you are. Is that doable? That helped me put things in perspective, too. take care, I'll be thinking of you.
Glad to hear from Bee and Bea. I am doing pretty well. A cotton ball seems to be helping my sphincter problems quite a bit. I'll leave it at that rather than give you the details. I try to occasionally create lists of what I'm grateful for and right now that's on the list! Also, I have Mondays off, my daughter's coming from CA this month and I'll be seeing my other daughter for Easter. All good things. Wishing you all good things too.
Penny
I'm so sorry you're feeling so frustrated with all of this. It is certainly understandable. Only you can decide what you can tolerate and what you can't. I felt the same way after my sphincteroplasty. I went from that to the impaction surgery, then those barium enema's. and then the ostomy. It was all too much. We have to pace ourselves, I think, and do things in our own time. If you have no reason to rush than maybe you can spend more time making the decision. You do have symptoms, the bleeding and any unusual pain I'd tell your GYN about. Working with an MD you have faith in helped me a lot and my antidepressant took away a lot of my anxiety and I at least felt better overall. Are you back to work? I think I remember you are. Is that doable? That helped me put things in perspective, too. take care, I'll be thinking of you.
Glad to hear from Bee and Bea. I am doing pretty well. A cotton ball seems to be helping my sphincter problems quite a bit. I'll leave it at that rather than give you the details. I try to occasionally create lists of what I'm grateful for and right now that's on the list! Also, I have Mondays off, my daughter's coming from CA this month and I'll be seeing my other daughter for Easter. All good things. Wishing you all good things too.
Penny
Dear all,
So much seems to happening with everyone.
For anyone new, Guest, new dad, drewsmom etc then I would encourage you to think carefully before agreeing to surgery. Could you live it? For me I was passing stool everytime and it was very difficult to ever be clean - this is because the hole in my bowel is large. But if it is just gas then you might see things differently. On the other hand we are all different in our attitudes - no attitude is wrong. The most important thing is you make the best decision you can at the time. I didn't discover this site until after my colostomy and I think I would have been horrified if I'd read all this at the outset as you girls have done. You must also remember that the old timers on this site are those who haven't healed - think of all those who get healed on the first or second surgery and without a stoma. All of which is possible.
That said here am I with a stoma which was done 6 months ago with my third repair. I have had my fistula for 4 years. Because my colstomy is reversible it means that some stool still gets through and this weekend I had my second bm since the stoma and the stool came through the fistula just the same as before. So even with a stoma my fistual is not healing. I don't know what to do - I dispair. So it is mixed news. One of the problems is poor patient information about treatments and success rates. How can we make an informed choice?
So like milesmom I've been feelign a bit down again. Milesmom - sometimes it is important to have a holiday from the thinking about it all if you can. Decide to put it on hold in your mind maybe? There is a lot of life still to enjoy and don't force yourself to make a decision too soon. I wish I could tell you it will be all right but I can't say that for sure. Penny is our beacon of hope that things can work out.
B and Penny - as ever hope you are OK. Cycling sounds good and I must start to do more exercise too!
Best wishes all,
Bea
So much seems to happening with everyone.
For anyone new, Guest, new dad, drewsmom etc then I would encourage you to think carefully before agreeing to surgery. Could you live it? For me I was passing stool everytime and it was very difficult to ever be clean - this is because the hole in my bowel is large. But if it is just gas then you might see things differently. On the other hand we are all different in our attitudes - no attitude is wrong. The most important thing is you make the best decision you can at the time. I didn't discover this site until after my colostomy and I think I would have been horrified if I'd read all this at the outset as you girls have done. You must also remember that the old timers on this site are those who haven't healed - think of all those who get healed on the first or second surgery and without a stoma. All of which is possible.
That said here am I with a stoma which was done 6 months ago with my third repair. I have had my fistula for 4 years. Because my colstomy is reversible it means that some stool still gets through and this weekend I had my second bm since the stoma and the stool came through the fistula just the same as before. So even with a stoma my fistual is not healing. I don't know what to do - I dispair. So it is mixed news. One of the problems is poor patient information about treatments and success rates. How can we make an informed choice?
So like milesmom I've been feelign a bit down again. Milesmom - sometimes it is important to have a holiday from the thinking about it all if you can. Decide to put it on hold in your mind maybe? There is a lot of life still to enjoy and don't force yourself to make a decision too soon. I wish I could tell you it will be all right but I can't say that for sure. Penny is our beacon of hope that things can work out.
B and Penny - as ever hope you are OK. Cycling sounds good and I must start to do more exercise too!
Best wishes all,
Bea
Karin, I hear you-I get down too, but things will get better. I always get down around my period...but I look at my awesome daughter and I smile, life is good. chin up...It will b ok....B
Thanks for the words of encouragement. I will let u all know what I decide to do. Really I don't know what I'd do without u!
Karin
Karin
ladies...
i've been battling an RVF for quite some time. i've posted here and there...my RVF was due to several bartholin's gland abscesses. this entire thing has lasted 3 1/2 years. i've had 2 failed plug attempts (the anofistula plug, and the rectovaginal fisutla "button" plug).
my surgeon in DC had reached his limit of expertise, and said that the doctors at the Cleveland Clinic in Weston, FL, have a bunch of experience. he referred me to Dr. Wexner, who then referred me to Dr. Sands (both colorectal surgeons). Dr. Sands placed (yet another) seton in september of '08, and decided that because i have minimal muscle damage, maybe it'd be best to try a transvaginal repair. she introduced me to Dr. Davila.
today marks the 2 week anniversary of my transvaginal repair. it's a layered repair. and as someone who's had MULTIPLE surgeries for this i feel qualified to say so far, so good!!!! the dr had me on mostly liquids for 14 days, but even now with some solid food, i'm not having ANY gas or stool pass...compared to before, when EVERY time i'd have gas or stool, at least some of it would pass through the fistula.
ok. so who knows if this will work. there are still crazy dietary and activities restrictions until 6 weeks post op. but this is fantastic so far. the Cleveland Clinic in FL is where it's AT for RVF repair!!! i'm lucky...i grew up in FL and have family still here. it's tough...the hospital is 3 hours away, but it's still TOTALLY worth it. AND the hospital is VERY willing to work with you about cost, etc.
i can't tell you how fantastic this entire experience has been. i've had surgeons, both GYN and Colorectal, in Boston, NY, and DC. so far, this has been the best.
this has been a really tough, painful journey for me. i feel for each of you. please feel free to contact me at any point!
i've been battling an RVF for quite some time. i've posted here and there...my RVF was due to several bartholin's gland abscesses. this entire thing has lasted 3 1/2 years. i've had 2 failed plug attempts (the anofistula plug, and the rectovaginal fisutla "button" plug).
my surgeon in DC had reached his limit of expertise, and said that the doctors at the Cleveland Clinic in Weston, FL, have a bunch of experience. he referred me to Dr. Wexner, who then referred me to Dr. Sands (both colorectal surgeons). Dr. Sands placed (yet another) seton in september of '08, and decided that because i have minimal muscle damage, maybe it'd be best to try a transvaginal repair. she introduced me to Dr. Davila.
today marks the 2 week anniversary of my transvaginal repair. it's a layered repair. and as someone who's had MULTIPLE surgeries for this i feel qualified to say so far, so good!!!! the dr had me on mostly liquids for 14 days, but even now with some solid food, i'm not having ANY gas or stool pass...compared to before, when EVERY time i'd have gas or stool, at least some of it would pass through the fistula.
ok. so who knows if this will work. there are still crazy dietary and activities restrictions until 6 weeks post op. but this is fantastic so far. the Cleveland Clinic in FL is where it's AT for RVF repair!!! i'm lucky...i grew up in FL and have family still here. it's tough...the hospital is 3 hours away, but it's still TOTALLY worth it. AND the hospital is VERY willing to work with you about cost, etc.
i can't tell you how fantastic this entire experience has been. i've had surgeons, both GYN and Colorectal, in Boston, NY, and DC. so far, this has been the best.
this has been a really tough, painful journey for me. i feel for each of you. please feel free to contact me at any point!
Guest,
Great to hear from you - you're the first person I've been in touch with who has also got their RVF from a bartolin cyst/absess.
I'm delighted to hear your news - I'm in the UK sadly so can't reach your clinic - but I might ask my consultant about trying a different procedure. So fingers crossed with your latest repair. The layered approach does seem to work better than some techniques based on what I've read on this site.
Bea
Great to hear from you - you're the first person I've been in touch with who has also got their RVF from a bartolin cyst/absess.
I'm delighted to hear your news - I'm in the UK sadly so can't reach your clinic - but I might ask my consultant about trying a different procedure. So fingers crossed with your latest repair. The layered approach does seem to work better than some techniques based on what I've read on this site.
Bea
Bea,
Hey...was it more or less than before the surgery-the output coming out of the fistula... I had one time when it came through, recently that was much less then the other day I had some brown gunk that only came out the right way...I am crossing my fingers that all is healing...maybe with time... have you talked to your doctor? I am so thinking of you each day., Be well, B
Hey...was it more or less than before the surgery-the output coming out of the fistula... I had one time when it came through, recently that was much less then the other day I had some brown gunk that only came out the right way...I am crossing my fingers that all is healing...maybe with time... have you talked to your doctor? I am so thinking of you each day., Be well, B
B,
Thank you for your comment and thoughts. What worries me is that every time I have a bm or the muscles there contract more comes through - ie it is going backwards in terms of healing. It is still less than before the surgery but it was proper poo this time and given I am passing less the proportion of it coming through the fistula and the speed with which it comes through (straight away) suggests that it is pretty much back to where it ws before.
I haev been back to the dr - hence the untlrasound but I don't get the results until 29 APril.
In my experience as soon as it starts coming through - that is it - the repair has failed because of the infection that comes with the poo. BUt who knows? there is nothing I can do for now.
Still at least yours is holding up OK - and you say less is coming through which is good. Maybe they will re-do my repair.
Bea
Thank you for your comment and thoughts. What worries me is that every time I have a bm or the muscles there contract more comes through - ie it is going backwards in terms of healing. It is still less than before the surgery but it was proper poo this time and given I am passing less the proportion of it coming through the fistula and the speed with which it comes through (straight away) suggests that it is pretty much back to where it ws before.
I haev been back to the dr - hence the untlrasound but I don't get the results until 29 APril.
In my experience as soon as it starts coming through - that is it - the repair has failed because of the infection that comes with the poo. BUt who knows? there is nothing I can do for now.
Still at least yours is holding up OK - and you say less is coming through which is good. Maybe they will re-do my repair.
Bea
Bea-
don't give up hope... who knows, right?
thanks for your well wishes... the waiting is the hardest,as you know.
I am crossing my fingers for both of us. all of us!
The idea that mine is small is comforting, as it was so big... hmmmm
we shall see.
other than that I am excited that easter is coming for my daughter, it will be so much fun...and work keeps me busy, which is good...
how is your relationship going? It is def. tough waiting...my hubby is good, but it is tough. b
don't give up hope... who knows, right?
thanks for your well wishes... the waiting is the hardest,as you know.
I am crossing my fingers for both of us. all of us!
The idea that mine is small is comforting, as it was so big... hmmmm
we shall see.
other than that I am excited that easter is coming for my daughter, it will be so much fun...and work keeps me busy, which is good...
how is your relationship going? It is def. tough waiting...my hubby is good, but it is tough. b
Bea,
I am sorry to hear about your recent events. It is so hard to stay hopeful when it appears things aren't getting better. Did your consultant have any thoughts about what to do in the event this last surgery wasn't successful? The vaginal repair seems to have worked for B. I'm still confused that you have a colostomy and still have poo passing. Did the MD explain how that happens? I think it was the time away from any passing stool that helped my fistula heal. I hope you find out more at your next appointment and you can think about next steps if this isn't going as it should. These things are so frustrating and can be so hard to fix. We are all thinking of you. Hope, too, you are finding some comfort with family and friends.
Karin,
Did you say 180 miles on a bike. Good Grief. You must be a pro. If I stay on I'll be lucky. That's great. Both my daughters exercise. I need to rev myself up to do anything!
B,
I'm taxing my brain but did you say you write? What do you write? That sounds interesting. It's so good to remember this RVF thing is only a small part of our lives even though it can feel like it's taking over sometimes!
Penny
I am sorry to hear about your recent events. It is so hard to stay hopeful when it appears things aren't getting better. Did your consultant have any thoughts about what to do in the event this last surgery wasn't successful? The vaginal repair seems to have worked for B. I'm still confused that you have a colostomy and still have poo passing. Did the MD explain how that happens? I think it was the time away from any passing stool that helped my fistula heal. I hope you find out more at your next appointment and you can think about next steps if this isn't going as it should. These things are so frustrating and can be so hard to fix. We are all thinking of you. Hope, too, you are finding some comfort with family and friends.
Karin,
Did you say 180 miles on a bike. Good Grief. You must be a pro. If I stay on I'll be lucky. That's great. Both my daughters exercise. I need to rev myself up to do anything!
B,
I'm taxing my brain but did you say you write? What do you write? That sounds interesting. It's so good to remember this RVF thing is only a small part of our lives even though it can feel like it's taking over sometimes!
Penny
Hello Everyone-
I tried to post the other day and noticed it has posted so I am trying again. I am the "Guest" that recently started posting that has had the fistula for almost 6 years now. My symptoms are mainly just gas. I have an appointment next week with a colon rectal surgeon. I am just tired of putting up with the embarassment of the gas coming out of the wrong place when I am in a social setting. The reason I have dealt with it for so long is because I wasn't sure if I was going to have anymore children and wanted to continue to have them vaginally.
I have to give myself an enema before the appointment. Has anyone ever done that? Also, have any of you ever had blood come out of your rectum while on your period? I don't... but I was thinking that I should if there is a fistula. What do you all think? Could mine be too small to have that happen?
Hope you all are doing well!
~Guest ( call me CJ)
I tried to post the other day and noticed it has posted so I am trying again. I am the "Guest" that recently started posting that has had the fistula for almost 6 years now. My symptoms are mainly just gas. I have an appointment next week with a colon rectal surgeon. I am just tired of putting up with the embarassment of the gas coming out of the wrong place when I am in a social setting. The reason I have dealt with it for so long is because I wasn't sure if I was going to have anymore children and wanted to continue to have them vaginally.
I have to give myself an enema before the appointment. Has anyone ever done that? Also, have any of you ever had blood come out of your rectum while on your period? I don't... but I was thinking that I should if there is a fistula. What do you all think? Could mine be too small to have that happen?
Hope you all are doing well!
~Guest ( call me CJ)
Hi all-
Penny- yeah 180 miles...but I haven't ever really done that before. It was a goal for me. Now though, I can hardly sit on my bike for 20 min at a time without really feeling the pain! Oh well, I can still walk so that's good!
Bea-Oh gosh, I really hope that you find out that you are just fine, and that there was some weird crazy reason for the passage that doesn't mean you have to have another repair! I will keep fingers crossed for you!
New person who just had a successful surgery- You said you went to Boston. I have my next appointment in that area. Where did you go, and was the experience alright? As stated in previous posts, no one has been able to find my fistula yet, but they all (except that horrid man who did my last appointment) believe that there must be something there. Hopefully the new doc will be able to find it. At least she is a woman! I have about had it with men telling me that I should be able to live with this! Like they have any idea right!
In general I have gotten over my woe is me, and decided to move on. I think I just needed a break from it all. With a new baby in the house, and all of these symptoms, sometimes I feel like I just need a break from everything! But as you said B, I look at him and know that I would do it all over again to have him here!
Hopefully with warmer weather I will feel a little more like myself!
Talk to you all soon,
Karin
Penny- yeah 180 miles...but I haven't ever really done that before. It was a goal for me. Now though, I can hardly sit on my bike for 20 min at a time without really feeling the pain! Oh well, I can still walk so that's good!
Bea-Oh gosh, I really hope that you find out that you are just fine, and that there was some weird crazy reason for the passage that doesn't mean you have to have another repair! I will keep fingers crossed for you!
New person who just had a successful surgery- You said you went to Boston. I have my next appointment in that area. Where did you go, and was the experience alright? As stated in previous posts, no one has been able to find my fistula yet, but they all (except that horrid man who did my last appointment) believe that there must be something there. Hopefully the new doc will be able to find it. At least she is a woman! I have about had it with men telling me that I should be able to live with this! Like they have any idea right!
In general I have gotten over my woe is me, and decided to move on. I think I just needed a break from it all. With a new baby in the house, and all of these symptoms, sometimes I feel like I just need a break from everything! But as you said B, I look at him and know that I would do it all over again to have him here!
Hopefully with warmer weather I will feel a little more like myself!
Talk to you all soon,
Karin
Penny- it is a small part of our lives--it isn't who we are...it just sucks..I def. don't want an ostomy, but I haven't and won't let it hold me back and I am pretty good with it, I hope i get good news...when I go for my appointment, but I have a feeling it is gonna be a little longer--when your rvf was healing-and you thought you were getting another repair surgery and then you got the take down instead--before that how did you know or why did you think it didn't work? Sorry if I am being redundant. And I write poetry-published-a new book that just came out...be good, and good luck with the cycling, I want to get in better shape tomorrow *ha...always tomorrow.
Hello everyone,
I've been having problems with the posting, too. I wonder if the site is having problems with that generally.
CJ I have read that some people have blood come out rectally during their period but if you're just passing gas that might mean you're isn't big enough, or maybe it's position or angle would prevent that from happening. It's always disconcerting when things come out of the wrong places!! When I didn't know I had a fistula one of the RN's who was helping me with the ostomy told me about hers and I just thought to myself , Wow, I'm so glad I don't have THAT, Ha. Giving oneself an enema is always awkward, I think. I had been doing them leaning back on my bum and just trying to angle it in the appropriate position. My MD recently suggested standing and putting one foot on your bathtub rim and doing it by touch. I've been trying the touch method but am really not very good at it. Good luck to you with that!
Bee- In the spring of last year I had a barium enema that seemed to show the fistula gone and then the weekend before the reversal I had a ton of the enema fluid come out of my vagina. So much for no fistula. I went from June to January waiting for my next surgery. I actually postponed it once on my own when the surgeon said it wasn't going to be easy and I could even have another sphincteroplasty. I needed more time to plan for that at work. And then it WAS gone. I'm glad it healed naturally but the layered surgery was the plan and the surgeon was confident he could fix it even after the reversal. I'm glad I didn't have to go through that. That's terrific about your poetry. If difficult times contribute to creativity, I see another book in the works!
take care all
Penny
I've been having problems with the posting, too. I wonder if the site is having problems with that generally.
CJ I have read that some people have blood come out rectally during their period but if you're just passing gas that might mean you're isn't big enough, or maybe it's position or angle would prevent that from happening. It's always disconcerting when things come out of the wrong places!! When I didn't know I had a fistula one of the RN's who was helping me with the ostomy told me about hers and I just thought to myself , Wow, I'm so glad I don't have THAT, Ha. Giving oneself an enema is always awkward, I think. I had been doing them leaning back on my bum and just trying to angle it in the appropriate position. My MD recently suggested standing and putting one foot on your bathtub rim and doing it by touch. I've been trying the touch method but am really not very good at it. Good luck to you with that!
Bee- In the spring of last year I had a barium enema that seemed to show the fistula gone and then the weekend before the reversal I had a ton of the enema fluid come out of my vagina. So much for no fistula. I went from June to January waiting for my next surgery. I actually postponed it once on my own when the surgeon said it wasn't going to be easy and I could even have another sphincteroplasty. I needed more time to plan for that at work. And then it WAS gone. I'm glad it healed naturally but the layered surgery was the plan and the surgeon was confident he could fix it even after the reversal. I'm glad I didn't have to go through that. That's terrific about your poetry. If difficult times contribute to creativity, I see another book in the works!
take care all
Penny