I had my barium test this week, but I don't see my doctor for the results for 2 weeks. I'm still with just my obgyn right now, but am looking for a colorectal specialist. The radiologist during the test acted like I can't have a fistula and only pass gas thru it. They only did the liquid barium part of the test, not the air part that is sometimes done. That ticked me off since I had to go thru that and they didn't do the air part which is what my symptoms are. Will a specialist see me without a referral from my obgyn? He is still in the denial stage, since his forceps and episiotomy caused this whole mess. I now have a uti, which I haven't had since I was a teenager (now 32).
Does anyone have problems with uti"s and vaginal infections? Since surgery seems so difficult and can lead to more problems, is it bad to just watch things for now? If anyone is just watching, are you on constant medicine for the vaginal and urinary infections? Any advice would help me.
Does anyone have problems with uti"s and vaginal infections? Since surgery seems so difficult and can lead to more problems, is it bad to just watch things for now? If anyone is just watching, are you on constant medicine for the vaginal and urinary infections? Any advice would help me.
I had my barium enema this week, but I don't see my doctor for 2 weeks. I'm still with my obgyn, but am looking for specialist. They only did the liquid part of the test, not the second (air) part. That ticked me off since gas is the only problem I'm having right now. It stinks to go thru all that without getting the part of the test I really needed.
I now have a uti, haven't had one since a teenager (now 32). What do you all do about vaginal and urinary infections due to the fistula? Are you on meds all the time or what? Is there any way to really prevent them besides good hygiene? I can't do anythign about the vaginal gas, so I don't know what else I could do at this point.
If a fistula is small and just watched, will it get bigger? Surgery seems extreme (and so many disappointing outcomes) at this piont since it is only gas. How long can you watch it without having it enlarge or have problems?
I now have a uti, haven't had one since a teenager (now 32). What do you all do about vaginal and urinary infections due to the fistula? Are you on meds all the time or what? Is there any way to really prevent them besides good hygiene? I can't do anythign about the vaginal gas, so I don't know what else I could do at this point.
If a fistula is small and just watched, will it get bigger? Surgery seems extreme (and so many disappointing outcomes) at this piont since it is only gas. How long can you watch it without having it enlarge or have problems?
Happy Easter weekend all!
Penny-thanks for the info. I know mine is still there, as I said...today, again, I had a bm and it came out of the right place, but some came out the wrong way-nothing like before-as it is so much smaller, so I am hoping that it will heal more over time like yours... we'll see, nothing that I can do to change it now, so I am not going to get too worried...I have heard that they can heal, so I am going to keep the faith...ha. Have a great holiday, enjoy every minute of it!
Bea, how r ya, thinking of you....
Guest, I haven't ever had a UTI, but I haven't had any horrible problems with vaginal infections either since I had the fistula, even before my ostomy...many people life with fistulas-when they are not having a major impact on their day to day lives... It is all up to you and how you feel, etc... I wish that I had never had my first surgery that did make mine larger, but I did and I am not dwelling... I do not think my situation is the norm, but it can happen and I am proof. I hope that you aren't dwelling to much on all of this either... it is hard not to, but as I have said I have an ostomy and it is not the end of the world, just an inconvience... hopefully temporarily. Be good, B
Penny-thanks for the info. I know mine is still there, as I said...today, again, I had a bm and it came out of the right place, but some came out the wrong way-nothing like before-as it is so much smaller, so I am hoping that it will heal more over time like yours... we'll see, nothing that I can do to change it now, so I am not going to get too worried...I have heard that they can heal, so I am going to keep the faith...ha. Have a great holiday, enjoy every minute of it!
Bea, how r ya, thinking of you....
Guest, I haven't ever had a UTI, but I haven't had any horrible problems with vaginal infections either since I had the fistula, even before my ostomy...many people life with fistulas-when they are not having a major impact on their day to day lives... It is all up to you and how you feel, etc... I wish that I had never had my first surgery that did make mine larger, but I did and I am not dwelling... I do not think my situation is the norm, but it can happen and I am proof. I hope that you aren't dwelling to much on all of this either... it is hard not to, but as I have said I have an ostomy and it is not the end of the world, just an inconvience... hopefully temporarily. Be good, B
Dear all,
Many thanks for your kind thoughts. They have helped a lot. I'm sorry that I got so down in a way, but sometimes these things can't be helped. It all gets too much. I'm feeling much better now - more positive. And the Easter break helps.
Re UTIs - I gather they are more common with a fistual for obvious reasons. I had my first UTI with my fistula, but only once so far which is weird because the fistual has got bigger since I had the UTI. My front end of the RVF actually comes out next to my vagina rather than inside it (so perhaps not a true RVF), but I gather the vagina can get an infections too as a result of an RVF.
Some one asked about bleeding with your period - for the same reason as above I don't get blood from the vagina in the rectum but I gather this can happen - it must depend what the connection is like I guess.
Happy Easter all - and special thanks to Penny and B as you have helped me through this especially.
Bea
Many thanks for your kind thoughts. They have helped a lot. I'm sorry that I got so down in a way, but sometimes these things can't be helped. It all gets too much. I'm feeling much better now - more positive. And the Easter break helps.
Re UTIs - I gather they are more common with a fistual for obvious reasons. I had my first UTI with my fistula, but only once so far which is weird because the fistual has got bigger since I had the UTI. My front end of the RVF actually comes out next to my vagina rather than inside it (so perhaps not a true RVF), but I gather the vagina can get an infections too as a result of an RVF.
Some one asked about bleeding with your period - for the same reason as above I don't get blood from the vagina in the rectum but I gather this can happen - it must depend what the connection is like I guess.
Happy Easter all - and special thanks to Penny and B as you have helped me through this especially.
Bea
Bea,
you have every right to get upset, this sucks...we all feel that way or we wouldn't be on this board to talk to others. I am glad you are feeling better. when do you go back? I go sometime soon...I have to call since i forgot exactly when. Hope you had a good Easter... We will all get through all of this...one way or the other. I have bad times too and I fully understand. B
you have every right to get upset, this sucks...we all feel that way or we wouldn't be on this board to talk to others. I am glad you are feeling better. when do you go back? I go sometime soon...I have to call since i forgot exactly when. Hope you had a good Easter... We will all get through all of this...one way or the other. I have bad times too and I fully understand. B
Hello everyone,
Just checking in. Hoping to be an affirmation that there is life after fistula! I was talking to my therapist today and she seemed to make some sense in describing my last couple of years. I had a long time when the initial surgery and the poor care I received seemed to be everything, then the ostomy took over my life for a time and now getting used to this not quiet good enough sphincter muscle has my full attention, and this too shall pass once I'm able to figure out how to deal with things on a day to day basis. Getting through those times was hard but made so much easier with people who understood and could identify with my issues. There were times my MD's were really in denial, office staff that was totally tuned out to what was happening to me, and other times when I had more hope then they did. It's so important to remember that we're in charge of our own situations and can make the best decisions for ourselves. Sorry for the ramble. So often we feel we have no control over these things but I've found we do have choices and that makes all the difference.
Penny
Just checking in. Hoping to be an affirmation that there is life after fistula! I was talking to my therapist today and she seemed to make some sense in describing my last couple of years. I had a long time when the initial surgery and the poor care I received seemed to be everything, then the ostomy took over my life for a time and now getting used to this not quiet good enough sphincter muscle has my full attention, and this too shall pass once I'm able to figure out how to deal with things on a day to day basis. Getting through those times was hard but made so much easier with people who understood and could identify with my issues. There were times my MD's were really in denial, office staff that was totally tuned out to what was happening to me, and other times when I had more hope then they did. It's so important to remember that we're in charge of our own situations and can make the best decisions for ourselves. Sorry for the ramble. So often we feel we have no control over these things but I've found we do have choices and that makes all the difference.
Penny
Hello Everyone-
I had my appointment today with the colon rectal surgeon. He did an exam and used a scope. He said he could see an area between the muscles where he thinks the fistula is. He said it is low and would be very small because my symptoms are only gas. He said that my muscle control was good and that I probably had some sort of tear/infection that I didn't even know about that caused the fistula from the episiotomy. He wants me to have a colonoscopy just to rule out anything else that could be causing my symptoms. He said it is really up to me if I want to repair it now or wait since I may want to have more children. I believe he said the kind of repair I would have is a flap repair.
I am thinking that after I have the colonoscopy I will then decide if I for sure want to have the surgery now or wait. My husband doesn't want anymore children and I am not sure, but think that maybe I should just get this fixed and then have a C-section if we ever did have a third baby. The doctor seems to think that my fistula won't be a problem to fix and that it doesn't involve any repair of my muscles which he said is a good thing. He said patients that have a fistula like mine are easier to fix especially since I don't have Chron's.
What would any of you do? Would you wait and get this repaired after you know for sure you are done having children? or would you just get it fixed and then have a C-section if you got pregnant again? It's hard for me to decide because I had my second child vaginally with the fistula and it didn't make my fistula worse at all. It was actually a very easy birth the second time. I still had an episotomy and the doctor tried to repair my fistula (which didn't work).
Hope you all are doing ok!
CJ
I had my appointment today with the colon rectal surgeon. He did an exam and used a scope. He said he could see an area between the muscles where he thinks the fistula is. He said it is low and would be very small because my symptoms are only gas. He said that my muscle control was good and that I probably had some sort of tear/infection that I didn't even know about that caused the fistula from the episiotomy. He wants me to have a colonoscopy just to rule out anything else that could be causing my symptoms. He said it is really up to me if I want to repair it now or wait since I may want to have more children. I believe he said the kind of repair I would have is a flap repair.
I am thinking that after I have the colonoscopy I will then decide if I for sure want to have the surgery now or wait. My husband doesn't want anymore children and I am not sure, but think that maybe I should just get this fixed and then have a C-section if we ever did have a third baby. The doctor seems to think that my fistula won't be a problem to fix and that it doesn't involve any repair of my muscles which he said is a good thing. He said patients that have a fistula like mine are easier to fix especially since I don't have Chron's.
What would any of you do? Would you wait and get this repaired after you know for sure you are done having children? or would you just get it fixed and then have a C-section if you got pregnant again? It's hard for me to decide because I had my second child vaginally with the fistula and it didn't make my fistula worse at all. It was actually a very easy birth the second time. I still had an episotomy and the doctor tried to repair my fistula (which didn't work).
Hope you all are doing ok!
CJ
Hi CJ and all,
This site is so quiet I'm wondering if there is a posting problem. Or maybe not.
CJ No one can really know what it's like to be in your shoes. I think it would be good for you to sleep on it, talk it over with your husband and decide whether it's tolerable until your next child if you decide you might want another. I'm glad things seem on the easier side to repair.
I am doing okay. Still have some strange allergy reaction that's not going away. So far it's not any of the meds I'm taking. Time to put away all unusual detergent, shampoo, etc. Maybe even my new bed cover. I guess it could be anything.
Hope everyone is doing well and getting out in the good weather.
Penny
This site is so quiet I'm wondering if there is a posting problem. Or maybe not.
CJ No one can really know what it's like to be in your shoes. I think it would be good for you to sleep on it, talk it over with your husband and decide whether it's tolerable until your next child if you decide you might want another. I'm glad things seem on the easier side to repair.
I am doing okay. Still have some strange allergy reaction that's not going away. So far it's not any of the meds I'm taking. Time to put away all unusual detergent, shampoo, etc. Maybe even my new bed cover. I guess it could be anything.
Hope everyone is doing well and getting out in the good weather.
Penny
I am so thankful that this thread exists. I have found very little on the net about this condition. I would stay away from OB/gyns like the plague. They are the ones who try to tell you that this is no big deal, you're just depressed, you are just imagining it. I was shocked that this kind of disregard, devaluation of women's health issues existed in this day and age in the United States. I want to thank all of you who have posted, you have really strengthened me to keep pushing on. I agree that formal support groups need to be formed and this deeply personal issue needs to be brought out into the daylight if we are to force the medical community to address it. I wanted to make a couple of points:
First, I plan on telling my daughters is to have an elective C-section the first time. Things can still go wrong, infection-wise, but may be easier to treat. I recently found a research article that stated that over 50% of OB's would be willing to do an elective C-section the first time around, while 65% of urogynecologists would agree to do an elective C-section.
Second, if you have this problem, stay away from OB/gyns and go straight to the colorectal surgeon. Also, do some research and try to find someone with the most experience in this area, keeping in mind that success is far from 100%.
My experience has been that the OB will try to put you off, disregard your complaints for 6-12 months because many fistulas heal on their own. That is why when you call for an appt, it is several months before they can see you. Unfortunately, many fistulas cross the pudendal nerve and cause nerve inflammation from the bacteria and ultimately nerve entrapment from scar tissue formation and fairly constant pain, then you get labeled with the nebulous "pelvic pain" term. Then they offer to "break up the scar tissue" which means reopening the fistulous tract so you have more bacteria and yeast flooding into the vagina. Then you have physical therapy which involves ultrasound to break up scar tissue and diathermy to destroy the nerve that sends pain signals. Unfortunately this can also destroy your ability to have an orgasm. All this is done without telling you of the risks and benefits. My advice would be to avoid the OB's. I've never met a genuinely caring one.
OK, enough ranting. Question, I use a 15% alcohol and water solution in a peribottle for cleansing the vagina of bacteria. I was wondering if anyone else had any home remedies for the vaginal burning and redness?
First, I plan on telling my daughters is to have an elective C-section the first time. Things can still go wrong, infection-wise, but may be easier to treat. I recently found a research article that stated that over 50% of OB's would be willing to do an elective C-section the first time around, while 65% of urogynecologists would agree to do an elective C-section.
Second, if you have this problem, stay away from OB/gyns and go straight to the colorectal surgeon. Also, do some research and try to find someone with the most experience in this area, keeping in mind that success is far from 100%.
My experience has been that the OB will try to put you off, disregard your complaints for 6-12 months because many fistulas heal on their own. That is why when you call for an appt, it is several months before they can see you. Unfortunately, many fistulas cross the pudendal nerve and cause nerve inflammation from the bacteria and ultimately nerve entrapment from scar tissue formation and fairly constant pain, then you get labeled with the nebulous "pelvic pain" term. Then they offer to "break up the scar tissue" which means reopening the fistulous tract so you have more bacteria and yeast flooding into the vagina. Then you have physical therapy which involves ultrasound to break up scar tissue and diathermy to destroy the nerve that sends pain signals. Unfortunately this can also destroy your ability to have an orgasm. All this is done without telling you of the risks and benefits. My advice would be to avoid the OB's. I've never met a genuinely caring one.
OK, enough ranting. Question, I use a 15% alcohol and water solution in a peribottle for cleansing the vagina of bacteria. I was wondering if anyone else had any home remedies for the vaginal burning and redness?
hey guys,
just wanted to check in...hey Penny, just busy as all get out with Easter and family; work and writing; daughter.... I hope you're well....
I go back to Dr. on Monday...will keep you updated... feel ok..
Hey Bea-how are you???
welcome all newbies... glad you found this site... Someone asked about what she should do-and I think that is such a hard question to answer-this is such a strange thing-my rvf (from after CB) was not huge until after I had a repair flap surgery-now I have the ostomy (had another surgery) Sometimes i wish I just left it, but I try not to go back in time, mentally. sometimes it works the first time, no ostomy, nothing...it is a tough call. I never dreamt I would be 32 with an ostomy...but then again-life is unpredictable, right? I hope it is temporary, but I am just enjoying each day, taking this for what it is (and what it isn't, meaning the end of the world!)
Have faith ladies... this weekend I want to start my garden-ha. fingers crossed and get some writing done....Are you riding your bike, Penny? Thinking of you all. B
just wanted to check in...hey Penny, just busy as all get out with Easter and family; work and writing; daughter.... I hope you're well....
I go back to Dr. on Monday...will keep you updated... feel ok..
Hey Bea-how are you???
welcome all newbies... glad you found this site... Someone asked about what she should do-and I think that is such a hard question to answer-this is such a strange thing-my rvf (from after CB) was not huge until after I had a repair flap surgery-now I have the ostomy (had another surgery) Sometimes i wish I just left it, but I try not to go back in time, mentally. sometimes it works the first time, no ostomy, nothing...it is a tough call. I never dreamt I would be 32 with an ostomy...but then again-life is unpredictable, right? I hope it is temporary, but I am just enjoying each day, taking this for what it is (and what it isn't, meaning the end of the world!)
Have faith ladies... this weekend I want to start my garden-ha. fingers crossed and get some writing done....Are you riding your bike, Penny? Thinking of you all. B
Beegirl1,
Ok, so I have a small RVF like you did, and the colon rectal surgeon said I too should have some sort of flap repair. I am going to have a colonoscopy first (in 2 weeks) so he can just check everything out in there I guess. THen I will need to decide for sure if I want surgery now.
My questions to you are: What kind of doctor did your flap surgery? OB or Colon Rectal? Was your RVF low? did it effect your muscles? According to him my muscles should not be effected by this repair which is good.
My doctor said that some women can just live with this for the rest of their lives and it won't get any worse or effect your body in the future! But he said he thinks these should be repaired because it isn't natural for gas to go through your vagina. Which I agree, why should we have to live like this? I just get so discouraged when I read about people having to get lots of surgeries done to fix this and then it can get worse. I just don't understad.
Thanks for your input!
CJ
Ok, so I have a small RVF like you did, and the colon rectal surgeon said I too should have some sort of flap repair. I am going to have a colonoscopy first (in 2 weeks) so he can just check everything out in there I guess. THen I will need to decide for sure if I want surgery now.
My questions to you are: What kind of doctor did your flap surgery? OB or Colon Rectal? Was your RVF low? did it effect your muscles? According to him my muscles should not be effected by this repair which is good.
My doctor said that some women can just live with this for the rest of their lives and it won't get any worse or effect your body in the future! But he said he thinks these should be repaired because it isn't natural for gas to go through your vagina. Which I agree, why should we have to live like this? I just get so discouraged when I read about people having to get lots of surgeries done to fix this and then it can get worse. I just don't understad.
Thanks for your input!
CJ
Hello all,
What a warm weekend. Where did spring go?
Did you get your garden started B? I brought my bike to the bike shop for a tune up which is farther than I've gotten in a number of years. Hopefully, I'll find time to do some riding at some point.
Tomorrow I start pelvic floor massage which is the next step after kegels. I'll let you know how that goes. The kegels alone did not take care of my sphincter problems so I'm trying this. I'm also going to try to improve my diet to see if that helps things along. I think I'm in a similar boat in some ways as B was in that I have more problems now than before my initial surgery. I really wish I'd searched out non surgical options but that's history and now I'm trying to make what I have doable.
Good luck CJ with your decision process. Hope all goes well,
Penny
What a warm weekend. Where did spring go?
Did you get your garden started B? I brought my bike to the bike shop for a tune up which is farther than I've gotten in a number of years. Hopefully, I'll find time to do some riding at some point.
Tomorrow I start pelvic floor massage which is the next step after kegels. I'll let you know how that goes. The kegels alone did not take care of my sphincter problems so I'm trying this. I'm also going to try to improve my diet to see if that helps things along. I think I'm in a similar boat in some ways as B was in that I have more problems now than before my initial surgery. I really wish I'd searched out non surgical options but that's history and now I'm trying to make what I have doable.
Good luck CJ with your decision process. Hope all goes well,
Penny
CJ,
Mine was low and tiny...after 8 mos. (right before surgery) it seemed to have become smaller still. I had a CRS do the first repair, a flap. He siad it wouldn't get bigger-but in my case it did. I do not have Crohns... anyway, in my case, the rvf became about the size of a finger...I ended up going to a new CRS (ironically met another women who had a RVF via a friend) so I went to her Dr., who did her "successful" repair...anyway, I opted for an ostomy becasue the rvf was so hard to deal with and am waiting on finding out how the second repair went-vaginal approach. I will write more after my dr. appointment tomorrow.... and try to answer any other questions...
I can't go back...and it may have been a quick fix...and it may be for you...there are just no absolutes and always, there are risks. I obviously wouldn't wish an ostomy on my worst enemy, but in a strange way, I am a more understanding person now, you know, you make the best of a situation...so if you ask me what to do, above is your answer. It is tough, sometimes, I do wish I just lived with it... but hopefully i will get a fix...B
and you will figure out what is best for you!!!!
Penny and Bea-hope you are well ladies!!!!!!!!!!!!! B
Mine was low and tiny...after 8 mos. (right before surgery) it seemed to have become smaller still. I had a CRS do the first repair, a flap. He siad it wouldn't get bigger-but in my case it did. I do not have Crohns... anyway, in my case, the rvf became about the size of a finger...I ended up going to a new CRS (ironically met another women who had a RVF via a friend) so I went to her Dr., who did her "successful" repair...anyway, I opted for an ostomy becasue the rvf was so hard to deal with and am waiting on finding out how the second repair went-vaginal approach. I will write more after my dr. appointment tomorrow.... and try to answer any other questions...
I can't go back...and it may have been a quick fix...and it may be for you...there are just no absolutes and always, there are risks. I obviously wouldn't wish an ostomy on my worst enemy, but in a strange way, I am a more understanding person now, you know, you make the best of a situation...so if you ask me what to do, above is your answer. It is tough, sometimes, I do wish I just lived with it... but hopefully i will get a fix...B
and you will figure out what is best for you!!!!
Penny and Bea-hope you are well ladies!!!!!!!!!!!!! B
Hi all,
I'm just checking in - I've got my next appt on Wednesday so hopefully write more then. I'm OK but seem to feel very tired at the moment.
CJ - it is really difficult to advise and all you can do is make a decision based on how you feel and with the best info you can get. You must remember that some people do get their repairs to work first time. One thing I would say is to ask the colorectal surgeon if the hole in the bowel is likely to get bigger. I have a large hole which is why it healing up is difficult. Also even though the front end of the fistula was small at first it got bigger because the hole in the bowel was bigger. If the hole in the bowel is small it may be unliekly to get bigger and 'doing nothing' might be an option as in surgery does risk making things worse (infection being the thing that will do that.). On the other hand a small hole is more likely to heal. I agree that passing gas through the vagina is not really acceptable though. Good luck and keep posting ....
B and Penny great to hear from you - glad you got the bike out Penny!
Bea
I'm just checking in - I've got my next appt on Wednesday so hopefully write more then. I'm OK but seem to feel very tired at the moment.
CJ - it is really difficult to advise and all you can do is make a decision based on how you feel and with the best info you can get. You must remember that some people do get their repairs to work first time. One thing I would say is to ask the colorectal surgeon if the hole in the bowel is likely to get bigger. I have a large hole which is why it healing up is difficult. Also even though the front end of the fistula was small at first it got bigger because the hole in the bowel was bigger. If the hole in the bowel is small it may be unliekly to get bigger and 'doing nothing' might be an option as in surgery does risk making things worse (infection being the thing that will do that.). On the other hand a small hole is more likely to heal. I agree that passing gas through the vagina is not really acceptable though. Good luck and keep posting ....
B and Penny great to hear from you - glad you got the bike out Penny!
Bea
okay Ladies,
I went back to the CRS today--and yeah, I am waiting...ha. Anyway, not bad news, not good news...just strengthening and he didn't feel anything (fistula) so I go back in 6 weeks....until then I guess it's just me and my stomie....be good, B
I went back to the CRS today--and yeah, I am waiting...ha. Anyway, not bad news, not good news...just strengthening and he didn't feel anything (fistula) so I go back in 6 weeks....until then I guess it's just me and my stomie....be good, B