Hello Everyone,
I went to the CRS this week. I had not been since September. We had talked about possibly doing surgery again in December. During the appointment I told the doctor I didn't think I was emotionally ready to have surgery again. He agreed and said he was relieved. He thinks I need more time to heal physically and emotionally. Maybe this summer! He mentioned a plug repair because there is no cutting involved. He says sometimes they work sometimes they don't. Real encouraging! Is it worth a try? My symptoms of the fistula are minimal... but it still makes me angry that I have it at all! UGH! I try not to think about it because I don't want my life to revolve around this because I do have a lot to be thankful for! Hope you all are doing okay! You sound good Flower!
CJ
I went to the CRS this week. I had not been since September. We had talked about possibly doing surgery again in December. During the appointment I told the doctor I didn't think I was emotionally ready to have surgery again. He agreed and said he was relieved. He thinks I need more time to heal physically and emotionally. Maybe this summer! He mentioned a plug repair because there is no cutting involved. He says sometimes they work sometimes they don't. Real encouraging! Is it worth a try? My symptoms of the fistula are minimal... but it still makes me angry that I have it at all! UGH! I try not to think about it because I don't want my life to revolve around this because I do have a lot to be thankful for! Hope you all are doing okay! You sound good Flower!
CJ
Hi CJ..brrrrrrrrr, winter is finally here.....Yea, I am doing ok, some days I get so angry about my situation, then other days I am ok....just an emotional rollercoaster I guess. My CRS in Cle can't get me in until end of Jan. I am scheduled to see my Gen Surgeon that did the colostomy next week and I trust him more than anyone to be totally honest with me, so I will wait and see what he says. Penny...After the resection, won't I have spchinter muscles to control the need NOT to run to bathroom so fast? After all this is what got me in his mess to begin with, bad muscle control and they have been repaired, so they should work after my reversal shouldn't they? I have had so many people mention to me that MAYBE...living with a colostomy wouldn't be such a bad thing.....why would they say that? yea, it's not the end of the world I agree, but if I or anyone had a choice to have one or not.....a no brainer...the only pleasure I get out of this is when a whiner (co worker who is a bit*#), starts in on her little ailments, I can say, "yea, well I have a bag of poo hanging off me..." and talk about a conversation stopper ! Bea, How are you holding up? And you too B, things are coming to an end with you concerning this issue, I hope ? I just have alot to think about and I am so afraid to get my hopes up again as you ALL can relate to....
So, stay positive, stay happy and above all, have faith...
flower
So, stay positive, stay happy and above all, have faith...
flower
Ha Flower,
I can't imagine saying that to a coworker but if it works for you..... You're right. Why are all these people telling you a colostomy isn't so bad. I had a similar experience with second opinions. Or the wound RN would say, you better do your kegels or you'll have this forever. Also disconcerting. I think sometimes sphincteroplasties have great outcomes-no issues ever and sometimes there's a whole range of outcomes less than great. Some of us seem to have less control than when we started and leakage where we had none. For others there may be no leakage or maybe life is doable with certain meds and or diet. I say hope for the best and if you don't get that do what you have to to make a go of no bag. Right now I am feeling like I can't go on vacations where I have to be anywhere at an early time. It takes me a couple of hours to make sure things have stopped. I'm typically so loose since the reversal I've started on lomotil to keep things from going all day. When that happens I'm beside myself. My kegel RN has talked about collagen (SP?) or botox. I think my CR MD nixed that at the last appointment.
Anyway,you're right. Stay positive and enjoy the holidays for now. YOu won't know what you have til the reversal and there's no reason to believe you have anything less than just right!!
Penny
I can't imagine saying that to a coworker but if it works for you..... You're right. Why are all these people telling you a colostomy isn't so bad. I had a similar experience with second opinions. Or the wound RN would say, you better do your kegels or you'll have this forever. Also disconcerting. I think sometimes sphincteroplasties have great outcomes-no issues ever and sometimes there's a whole range of outcomes less than great. Some of us seem to have less control than when we started and leakage where we had none. For others there may be no leakage or maybe life is doable with certain meds and or diet. I say hope for the best and if you don't get that do what you have to to make a go of no bag. Right now I am feeling like I can't go on vacations where I have to be anywhere at an early time. It takes me a couple of hours to make sure things have stopped. I'm typically so loose since the reversal I've started on lomotil to keep things from going all day. When that happens I'm beside myself. My kegel RN has talked about collagen (SP?) or botox. I think my CR MD nixed that at the last appointment.
Anyway,you're right. Stay positive and enjoy the holidays for now. YOu won't know what you have til the reversal and there's no reason to believe you have anything less than just right!!
Penny
Blue eyes--could you please provide me with the name of your CRS in GA? I've experienced two failed RVF repairs and could use some names of successful CRS who have specialized in these repairs. Anyone out there have any names and states of specialists in RVF repairs? Mine is a low RVF due to obstetric trauma. HELP!
Blueeyes,
Could you please share the name of your CRS doctor in Georgia. I have had 2 failed surgeries on my very low RVF due to obstectric trauma.
To others who have had successful repairs: Can you please share how many repairs you have had, the procedure completed, names of your surgeon and the State they are in. I would really appreciate any feedback!
Could you please share the name of your CRS doctor in Georgia. I have had 2 failed surgeries on my very low RVF due to obstectric trauma.
To others who have had successful repairs: Can you please share how many repairs you have had, the procedure completed, names of your surgeon and the State they are in. I would really appreciate any feedback!
Kitty10,
Welcome! sorry to hear you have a RVF still not repaired. What kinds of surgeries did you have? Did you try the plug? I have had a failed flap repair and my CRS is suggesting possilby trying the plug. Thankfully my fistula isn't that bad. What is yours like?
CJ
Welcome! sorry to hear you have a RVF still not repaired. What kinds of surgeries did you have? Did you try the plug? I have had a failed flap repair and my CRS is suggesting possilby trying the plug. Thankfully my fistula isn't that bad. What is yours like?
CJ
CJ,
I have had a failed flap repair and failed transperineal layered repair. The stats on the plug does not seem encouraging but at least it is not cutting surgery. My fistula got worse after surgery. Did you have an ileo or colostomy procedure done? If yes, how is that working for you? That is probably my next step......sigh. I wish this ordeal would disappear and am very blue.
I have had a failed flap repair and failed transperineal layered repair. The stats on the plug does not seem encouraging but at least it is not cutting surgery. My fistula got worse after surgery. Did you have an ileo or colostomy procedure done? If yes, how is that working for you? That is probably my next step......sigh. I wish this ordeal would disappear and am very blue.
Kitty,
I got my RVF from the birth of my first child. I went on to have another vaginal delivery hoping they could repair the RVF then. It didn't work.... 3 years went by and I decided to have the flap repair done. My fistula has always remained small and I only have stool pass if I have bad diarrhea. I also will pass vaginal gas. Since I have had the flap, things have seemed better but I know it is still there because I will still pass gas from time to time. UGH! I haven't ever had the colostomy or ileo! I am scrared of that.
My CRS says we could try a vaginal repair or plug, or just live with it since my symptoms aren't bad. I don't know what to do. I definitley am not ready for surgery again. My flap repair was this past July. I am a teacher so I can only do these repairs in the summer.
What are your symptoms like?
CJ
I got my RVF from the birth of my first child. I went on to have another vaginal delivery hoping they could repair the RVF then. It didn't work.... 3 years went by and I decided to have the flap repair done. My fistula has always remained small and I only have stool pass if I have bad diarrhea. I also will pass vaginal gas. Since I have had the flap, things have seemed better but I know it is still there because I will still pass gas from time to time. UGH! I haven't ever had the colostomy or ileo! I am scrared of that.
My CRS says we could try a vaginal repair or plug, or just live with it since my symptoms aren't bad. I don't know what to do. I definitley am not ready for surgery again. My flap repair was this past July. I am a teacher so I can only do these repairs in the summer.
What are your symptoms like?
CJ
Hi Everyone. Long time since I've written, but I've been checking in often. I last saw my CRS on October 20th, and my fistula was compared to the hole at the tip of a retractable pen. (2 mm?) I often go a week without anything coming through, but live in constant fear of soiling myself. My CRS and I discussed at length another surgery, and have decided to put it off for a bit while I see if I can live like this. She said this was now about quality of life and recommended I not have another if I could live with it as it is. So my husband and I have been trying to move on and have even made four attempts at having sex. This hasn't seemed to work yet, and I'm worried that my vaginal canal has somehow been shortened with all the cutting open and multiple sewing shut. I go to my OBGYN in three weeks and he will hopefully tell me everything looks fine and I just need to relax more.
Anyway, so that's the latest with me. I've been sinking into a bit of a depression lately and have started seeing a therapist. I'm not sure if it's working though, as I generally am angrier when I leave her office than I was when I went in. We'll see how it all goes.
CJ - Your RVF sounds like mine. Do you do anything after a bowel movement, or do you just not worry about things and get on with your day? I'm still putting in some gauze in my labia to catch anything that may come out. More often than not, nothing comes out, but I'm always so anxious to check and see.
Time to go. Hope everyone is well. Happy holidays!
RLWmom
Anyway, so that's the latest with me. I've been sinking into a bit of a depression lately and have started seeing a therapist. I'm not sure if it's working though, as I generally am angrier when I leave her office than I was when I went in. We'll see how it all goes.
CJ - Your RVF sounds like mine. Do you do anything after a bowel movement, or do you just not worry about things and get on with your day? I'm still putting in some gauze in my labia to catch anything that may come out. More often than not, nothing comes out, but I'm always so anxious to check and see.
Time to go. Hope everyone is well. Happy holidays!
RLWmom
Hi again
Kitty, my RVF was caused by a fourth degree tear upon the birth of my daughter. It didn't heal properly and was very large. I had a colorectal surgeon in DC do a sphincteroplasty with a layered approach to close the RVF through the rectum in May. The sphincteroplasty appears to have helped my incontinence, but the RVF reopened shortly after the surgery. It has gotten smaller since it reopened and is SO much smaller than the original fistula, that I'm hesitant to do anything to fix it. My surgeon warned me that an additional flap attempt could actually make the fistula larger than it is now, and i definitely don't think I could handle that. So I'm sitting and waiting and hoping and praying that it will continue to get smaller on its own and ultimately close up. Sorry you have to join our little group, but am glad that you found us.
Hang in there,
RLWmom
Kitty, my RVF was caused by a fourth degree tear upon the birth of my daughter. It didn't heal properly and was very large. I had a colorectal surgeon in DC do a sphincteroplasty with a layered approach to close the RVF through the rectum in May. The sphincteroplasty appears to have helped my incontinence, but the RVF reopened shortly after the surgery. It has gotten smaller since it reopened and is SO much smaller than the original fistula, that I'm hesitant to do anything to fix it. My surgeon warned me that an additional flap attempt could actually make the fistula larger than it is now, and i definitely don't think I could handle that. So I'm sitting and waiting and hoping and praying that it will continue to get smaller on its own and ultimately close up. Sorry you have to join our little group, but am glad that you found us.
Hang in there,
RLWmom
Hi everyone.well I went to my general surgeon, he scoped and poked and prodded and says the fistula is healed over, so that makes both him and my CRS saying the same thing. I am going in to have the reversal done late Feb or March sometime, to give the flesh time to soften up as bit in there. the muscle repair that was done still looks good so I am hoping that I won't have the incontinence problem that led to to this whole saga in the first place. (I too am doing kegels, the exterior muscles I have had strenthened over the years to compensate for the weaker interior ones ...) if I had NOT gone with the colostomy I would still be dealing with an unhealed fistula and possibly more failed surgeries....I am glad I got the colostomy now, wish I went with it alot sooner in the game, so Kitty10 it is not the end of the world to have one, an inconvience, an adjustment, (it becomes part of your routine of life, get up in the morning, brush your teeth, comb your hair, empty your pouch, take a shower...etc etc...) yes, but not unbearable. I had the flap and the layered surgery done with failures....I needed to have the stool diverted from the fistula to give it time to heal. So don't let the prospect of a colostomy scare you, it's all in the attitude you develop....I am a no nonsense type of person who tends to deal with issues head on, I get depressed by this stupid thing, but then I just have to believe that there is an end and there is a God who who is there for me too. So Penny, I am going to go for it !! besides I have Crohns and having a colostomy isn't always a good thing as I can get a flare-up at the stoma,so unless I really need to have Stella around to survive....take care all and keep the faith and this site is a great place to connect with others !!
flower
flower
RLWmom,
I don't know the actual size of my fistula. When I went for my last visit 2 weeks ago he didn't do an exam. It is just so uncomfortable that I can't stand it. We are assuming the whole is small since my symptoms are minimal. I don't usually pass any stool. If I have very solid BMs then I am usually fine and don't worry about things. If they are softer and I have to wipe more then sometimes I worry and will check to see if anything has come through. So far I have been pretty good with nothing coming through. I have really only had a few specs of stool come through a handful of times since my failed surgery this past summer. I don't seem to pass as much vaginal gas like I used to before my flap repair. Usually that will only happen in the morning when I get out of bed or not at all. I used to get so embarrassed when it would happen in front of people. I would just hope they didn't notice!! UGH
Did your surgeon say anthing about the plug?? My CRS felt like too I should see if I can live with this or maybe try the plug since it's no cutting. He basically said sometimes he's had them work and sometimes not. I wouldn't do anything until this summer if I try again because I am a teacher and would have the time off.
Sex, that can be difficult. You probably just need to relax more. Maybe you should try dialators. I have had issues with this as well and have been very tense. My CRS recommeded dialators to ease my way back into sex. I haven't tried it yet.
Hope everyone has a Merry Christmas!!
FLOWER- So happy for you that you are doing well! : )
CJ
I don't know the actual size of my fistula. When I went for my last visit 2 weeks ago he didn't do an exam. It is just so uncomfortable that I can't stand it. We are assuming the whole is small since my symptoms are minimal. I don't usually pass any stool. If I have very solid BMs then I am usually fine and don't worry about things. If they are softer and I have to wipe more then sometimes I worry and will check to see if anything has come through. So far I have been pretty good with nothing coming through. I have really only had a few specs of stool come through a handful of times since my failed surgery this past summer. I don't seem to pass as much vaginal gas like I used to before my flap repair. Usually that will only happen in the morning when I get out of bed or not at all. I used to get so embarrassed when it would happen in front of people. I would just hope they didn't notice!! UGH
Did your surgeon say anthing about the plug?? My CRS felt like too I should see if I can live with this or maybe try the plug since it's no cutting. He basically said sometimes he's had them work and sometimes not. I wouldn't do anything until this summer if I try again because I am a teacher and would have the time off.
Sex, that can be difficult. You probably just need to relax more. Maybe you should try dialators. I have had issues with this as well and have been very tense. My CRS recommeded dialators to ease my way back into sex. I haven't tried it yet.
Hope everyone has a Merry Christmas!!
FLOWER- So happy for you that you are doing well! : )
CJ
HEY LADIES-Just stopping by to say hello-all has been ok since my take down-I know that it is still there, so very, very small--darn fistulas....anyway, it is really easy to deal with compared to how it was and I am happy about that-I do get some air sometimes and some little gunk (Tiny specs) if i have diarrhea....but it is fine and I am fine and I am back to my life-and not thinking and fearing the sitaution 24-7...I had a failed attempt and a ileostomy and now I am still not 100 percent, but ok- 2 years of heck- and ladies I think of all of you and want you to know we are not alone and things can get better....Merry XMas all-Bea and Penny I hope you are ok.... much love to you-beegirl
Hi everyone,
Beegirl, good to hear from you and to hear that all is going well. It is good to hear of successes and to see all things don't need to be 'perfect' to be a success. I am still struggling away, fistula I'm glad has been totally gone since my reversal, but leakage challenges continue. As long as I'm indoors and near a bathroom I do well but it does make me think twice about shopping or going for longer than short walks. I see a gastroenterologist next week, maybe he'll have some ideas. I found out I was allergic to imodium so have tried Lomotil which I think I'll use pre longish walks to insure a carefree one! Thanks again for all your support through the challenges. It felt so good to be going through these things with someone who knew just what it was like!
Hope everyone is doing well enough over the holidays and enjoying family and friends. They really do get us through it all!
Penny
Beegirl, good to hear from you and to hear that all is going well. It is good to hear of successes and to see all things don't need to be 'perfect' to be a success. I am still struggling away, fistula I'm glad has been totally gone since my reversal, but leakage challenges continue. As long as I'm indoors and near a bathroom I do well but it does make me think twice about shopping or going for longer than short walks. I see a gastroenterologist next week, maybe he'll have some ideas. I found out I was allergic to imodium so have tried Lomotil which I think I'll use pre longish walks to insure a carefree one! Thanks again for all your support through the challenges. It felt so good to be going through these things with someone who knew just what it was like!
Hope everyone is doing well enough over the holidays and enjoying family and friends. They really do get us through it all!
Penny
CJ- Thanks for your post. What kind of dilators are you talking about? Is it something you ingest, or something else? I'm going to see my OB on Monday, but don't know what to ask.
Hope you are all well!
RLWmom
Hope you are all well!
RLWmom