Gosh, I don't know what to do now. My CRS said that a flap on the rectal side for my second repair would be more successful than a layered approach vaginally b/c the rectal side has more pressure put upon it than the vaginal side, requiring a stronger repair from that side than the other. I do trust her, but worry that I may be one of those for whom healing is difficult, and REALLY don't want to have to go through all this a third (or fourth!) time. I think I'll definitely get a second opinion. This is all so difficult - not only do we have to worry about these wretched symptoms, but we have to stress about finding the perfect doctor and the perfect approach for our bodies. Sigh. Thank God for Zoloft.
Stay strong, ladies!
RLWmom
Stay strong, ladies!
RLWmom
Another quick question - has anyone had any advice about walking about after a repair? My doctor says try not to move about too much for a couple of weeks. Has anyone had any other/similar advice?
Bea
Bea
In case my last post didn't happen - has anyone had any advice about walking/moving about after a repair? My doctor says try not to move too much for the first couple of weeks but what about after that?
Bea
Bea
Hello everyone,
Just wanted to welcome you home Bea and share my healing wishes for you. I had an overlap surgery but there were no limits to that after surgery. Do you feel anything at all? I hope you have some good healing/relaxing/recoverying time.
Penny
Just wanted to welcome you home Bea and share my healing wishes for you. I had an overlap surgery but there were no limits to that after surgery. Do you feel anything at all? I hope you have some good healing/relaxing/recoverying time.
Penny
Hey all,
SO FAR SO GOOD...THE FISTULA APPEARS TO BE GONE!!! I am still nervous, as almost two years with it, I feel like it could still be there...I am having a hard time regulatin my diet, but I am sure that over time that will get better. I want to get back in shape... get my staples out Wednesday. There is hope ladies, there is hope for all of us. I believe we learn during hard times about ourselves, our family, each other... even if the experience is bad the outcome can be great... If I missed anyones questions, let me know...as I have been pretty beat and don't mean to overlook, just trying to get back to normal. Went to a wedding this weekend and danced up a storm with my little girl. Life is great!
BEA- Yeah-you are next!!!!!!!!!!!!!!!!!!!!! Take it easy.......
Penny-thank you for all your encouragement!
Newbies-welcome-you will get there, this is a great board.....
Flower-sounds like the ostomy is great for you! Yeah! how else is everthing going?
Ok I am so tired. Bye ladies, B
SO FAR SO GOOD...THE FISTULA APPEARS TO BE GONE!!! I am still nervous, as almost two years with it, I feel like it could still be there...I am having a hard time regulatin my diet, but I am sure that over time that will get better. I want to get back in shape... get my staples out Wednesday. There is hope ladies, there is hope for all of us. I believe we learn during hard times about ourselves, our family, each other... even if the experience is bad the outcome can be great... If I missed anyones questions, let me know...as I have been pretty beat and don't mean to overlook, just trying to get back to normal. Went to a wedding this weekend and danced up a storm with my little girl. Life is great!
BEA- Yeah-you are next!!!!!!!!!!!!!!!!!!!!! Take it easy.......
Penny-thank you for all your encouragement!
Newbies-welcome-you will get there, this is a great board.....
Flower-sounds like the ostomy is great for you! Yeah! how else is everthing going?
Ok I am so tired. Bye ladies, B
Beegirl........That is GREAT news and just what we need to hear !!!
I get a little mixed up what with talking to so many on the site, which is great, but to ask again and forgive me if I sound like a record.....You got your ostomy after a failed RVF repair attempt, correct? Then did you have another RVF repair attempt after the ostomy, and if so.how long did you wait to attempt it? Did it close up due to the surgery or did it finally close on its own ? How long did you then wait to have the ostomy reversed? That was the surgery you just had, correct? I guess I am looking for something of a time frame to start thinking about the next repair attempt on the RVF while I still have ostomy so the healing chances are greater...
I am excited about your success that it is motivating me, I know I have a ways to go with the healing and I need more time, but there seems to be hope !!
Bea. How are you doing too? We are looking for you to have a good outcome also.....
The Colostomy is working out pretty darn good actually, I moved my daughter to P burgh Sun and managed the whole day just fine....IT's a 4 hour drive one way and I only needed to stop once and that is because we stopped to eat ! Stella has shrunk quite a bit, getting back into my normal clothes a little, I actually wonder if she can shrink right back into my tummy, she sure seems like that is where she really wants to be !!
I passed a lot of mucus thru the rectum this morning, I noticed some was coming thru the vag opening, so when I feel the urge to "go" I try to get it out the butt so it won't feel compelled to go thru the fistula....Did anyone else have this? At least this way I know the fistula is still open, not sure how big or even if it is getting smaller, but keeps me in a reality check.
everyone, hang in there as we all are, not much choice but we do the best we can !
flower
I get a little mixed up what with talking to so many on the site, which is great, but to ask again and forgive me if I sound like a record.....You got your ostomy after a failed RVF repair attempt, correct? Then did you have another RVF repair attempt after the ostomy, and if so.how long did you wait to attempt it? Did it close up due to the surgery or did it finally close on its own ? How long did you then wait to have the ostomy reversed? That was the surgery you just had, correct? I guess I am looking for something of a time frame to start thinking about the next repair attempt on the RVF while I still have ostomy so the healing chances are greater...
I am excited about your success that it is motivating me, I know I have a ways to go with the healing and I need more time, but there seems to be hope !!
Bea. How are you doing too? We are looking for you to have a good outcome also.....
The Colostomy is working out pretty darn good actually, I moved my daughter to P burgh Sun and managed the whole day just fine....IT's a 4 hour drive one way and I only needed to stop once and that is because we stopped to eat ! Stella has shrunk quite a bit, getting back into my normal clothes a little, I actually wonder if she can shrink right back into my tummy, she sure seems like that is where she really wants to be !!
I passed a lot of mucus thru the rectum this morning, I noticed some was coming thru the vag opening, so when I feel the urge to "go" I try to get it out the butt so it won't feel compelled to go thru the fistula....Did anyone else have this? At least this way I know the fistula is still open, not sure how big or even if it is getting smaller, but keeps me in a reality check.
everyone, hang in there as we all are, not much choice but we do the best we can !
flower
Flower- I had one surgcal repair an advancement flap-(rectally) that failed w/o the ostomy-made mine larger.
then a layered approach vaginally, the day I had the ostomy. If I did not have the ostomy it would have failed, as fecal matter and such (mucus) did pass through vaginally as the healing happened-eventually the repair healed over-scabbed over... and now the tract is gone. So don't be disheartened by anything. be good, beegirl
then a layered approach vaginally, the day I had the ostomy. If I did not have the ostomy it would have failed, as fecal matter and such (mucus) did pass through vaginally as the healing happened-eventually the repair healed over-scabbed over... and now the tract is gone. So don't be disheartened by anything. be good, beegirl
Beegirl - Just wanted to say THANK YOU for your positivity! I got all teary reading about your dancing with your little girl. This is my dream and it WILL happen! I can't wait! Take care of yourselves ladies! We will ALL be dancing soon!
Best,
RLWmom
Best,
RLWmom
Beegirl,
Did a colon rectal surgeon do your transvaginal repair? or was it a urogynocologist? I am wondering which doctor would be best for that repair.
I am so happy for you that you are all healed! I am sure it is such a relief. I hope you have a wonderfull school year! You deserve it.
Best wishes,
CJ
Did a colon rectal surgeon do your transvaginal repair? or was it a urogynocologist? I am wondering which doctor would be best for that repair.
I am so happy for you that you are all healed! I am sure it is such a relief. I hope you have a wonderfull school year! You deserve it.
Best wishes,
CJ
RLW-Thanks-It really is a long journey and I am still nervous everytime I go to the bathroom now...I think Penny said the same thing after her reversal. I have to say, I learned a lot from this and you will too. As weird as this sounds, I just hope I am a better person now.
CJ- I had two CRS do the repair-The first one w/o the colostomy and then the second (dif. CRS) for the second. I would go CRS-I went to my second CRS after meeting a woman who used him for a rvf and she had a positive outcome. I heard my CRS was excellent. Do your research. ASK QUESTIONS. For me the ostomy really helped the fix...I am crossing my fingers that it will hold now...
Ladies-Be good....
Penny--You are right, now I am going none stop--ha....funny, how it works. did you get a ton of cramping too? Are you still nervous about the repair holding? B
CJ- I had two CRS do the repair-The first one w/o the colostomy and then the second (dif. CRS) for the second. I would go CRS-I went to my second CRS after meeting a woman who used him for a rvf and she had a positive outcome. I heard my CRS was excellent. Do your research. ASK QUESTIONS. For me the ostomy really helped the fix...I am crossing my fingers that it will hold now...
Ladies-Be good....
Penny--You are right, now I am going none stop--ha....funny, how it works. did you get a ton of cramping too? Are you still nervous about the repair holding? B
Hi everyone,
B, even after all this time I'm finding it difficult to have some kind of normal. I was doing somewhat okay, then went for that vacation and don't remember eating anything terrible but have really been loose since. I'm back on the probiotic, eating yogurt, bran buds, etc. I took an imodium yesterday and still no positive response. I just started taking my blood pressure pill and am wondering if it's causing me to be extremely loose. As long as things are pretty much done before I leave for work I'm happy. At work I focus on my clients and 'the work' and am able to put my worries 'behind' (ha) me. You sound like you're doing well. I still do some worrying now when I'm loose about my fistula, it does feel like there's air passing sometimes, but if that's it I'm happy. I don't remember the cramping. How long did you have your ostomy? I can't seem to remember. How are you healing?
Hang in there everyone!
Penny
B, even after all this time I'm finding it difficult to have some kind of normal. I was doing somewhat okay, then went for that vacation and don't remember eating anything terrible but have really been loose since. I'm back on the probiotic, eating yogurt, bran buds, etc. I took an imodium yesterday and still no positive response. I just started taking my blood pressure pill and am wondering if it's causing me to be extremely loose. As long as things are pretty much done before I leave for work I'm happy. At work I focus on my clients and 'the work' and am able to put my worries 'behind' (ha) me. You sound like you're doing well. I still do some worrying now when I'm loose about my fistula, it does feel like there's air passing sometimes, but if that's it I'm happy. I don't remember the cramping. How long did you have your ostomy? I can't seem to remember. How are you healing?
Hang in there everyone!
Penny
Hey Everyone,
Beegirl: I don't know if you remember.. but in June I had the flap repair through rectum done and it failed after 2 weeks. The CRS went back in 3 days after it failed to restitch. Then a week later I had gas coming through! It has been 6 weeks since that happened. I have been eating a low residue diet and have not been passing stools through the vagina or gas. Although I don't really seem to be gassy on this diet at all. I also take stool softners. The CRS seems to think that my fistula is not worse... and that it could possibly heal over in a few months as long as my bowels are not runny or i don't get constipated. I have had stool pass 2 times during this 6 weeks and it wasn't much either time. It's hard for me to be hopeful that it would just heal... but at least mine seems to not be worse and it's manageable. He did tell me that after 6 weeks I am not in danger of the fistula getting in worse.
I have also talked to my gyn about everything that has happened. He is friends with my CRS. They both talked about working together to do a transvaginal repair in a couple of months if I need it. My gyn said he would assit but that he doens't have experience fixing these things. He mentioned a urogyncologist that could possibly help. I mentioned this to my CRS and he said he knows this doctor as well and that he could talk to him too about helping with the repair if we need to do one.
SO, I am trying not to get so upset about all of this. I am actually going to counseling at my church to deal with all the anxiety and anger over this situation. It is helping me cope and know that God has a plan and will get me though this.
I am so thankful I have all of you to talk to because this is something I can't talk to any of my friends about since it is so rare. Nobody understands.
I hope you all have a good weekend. Please keep in touch and let me know how you all are doing.
CJ
Beegirl: I don't know if you remember.. but in June I had the flap repair through rectum done and it failed after 2 weeks. The CRS went back in 3 days after it failed to restitch. Then a week later I had gas coming through! It has been 6 weeks since that happened. I have been eating a low residue diet and have not been passing stools through the vagina or gas. Although I don't really seem to be gassy on this diet at all. I also take stool softners. The CRS seems to think that my fistula is not worse... and that it could possibly heal over in a few months as long as my bowels are not runny or i don't get constipated. I have had stool pass 2 times during this 6 weeks and it wasn't much either time. It's hard for me to be hopeful that it would just heal... but at least mine seems to not be worse and it's manageable. He did tell me that after 6 weeks I am not in danger of the fistula getting in worse.
I have also talked to my gyn about everything that has happened. He is friends with my CRS. They both talked about working together to do a transvaginal repair in a couple of months if I need it. My gyn said he would assit but that he doens't have experience fixing these things. He mentioned a urogyncologist that could possibly help. I mentioned this to my CRS and he said he knows this doctor as well and that he could talk to him too about helping with the repair if we need to do one.
SO, I am trying not to get so upset about all of this. I am actually going to counseling at my church to deal with all the anxiety and anger over this situation. It is helping me cope and know that God has a plan and will get me though this.
I am so thankful I have all of you to talk to because this is something I can't talk to any of my friends about since it is so rare. Nobody understands.
I hope you all have a good weekend. Please keep in touch and let me know how you all are doing.
CJ
Penny- I had my ostomy for 7.5 mos. It is such a weird transition...ha... I thik i am doing ok, just worried etc.... I have been eating what I want moderately and with fiber pills now.... to add bulk... I hear what you are saying, sometimes i am scared i feel air--but it is not what it was...was intimate with my hubby 4 the first time in 9 mos. and it was wonderful... not tryig to be graphic, but realistic... B
CJ-above I said colostomy, a mistake I had an Ileo. Be good, b
Hi everyone,
This is such a hard haul. There are so many stages and so much to deal with. I'm glad CJ that you have some support through all this. It is interesting to hear your doctors talking about working together. How much success has your CRS had with these before? I would certainly ask and make sure your sugeons have a good success rate. I think this is much more common than we think. It's just that no one wants to discuss it because it feels so embarrassing. Fistulas can occur in many places in the body but when things have to do with our "waste products" it becomes attached to all kinds of difficult feelings. I'm glad things are better for you overall. I have to remind myself to celebrate every little progress.
B, I'm glad things are back to normal for you; having sex with your husband is such an important connection. Having that kind of a break certainly tests anyone's relationship.
I have decided to try to come off my Lexapro which I've found to be another challenge. I'm getting a lot of the depressive feelings I've had in the past and really not wanting to revisit them. I think I need to face some of those feelings to get back to normalcy but it also includes some night anxiety, dreaming about my leftover 'issue', continuing to feel a lot of anger regarding my first physician. I think I have to expect some of this and be patient, keep busy, and try not to get frustrated with my sphincter issue. I can work and do most things I used to but have to pay close attention on how I feel rectally. Bathrooms feel way too much of my life. Today I get my hair done which usually perks me up!
Thanks for listening,
Penny
This is such a hard haul. There are so many stages and so much to deal with. I'm glad CJ that you have some support through all this. It is interesting to hear your doctors talking about working together. How much success has your CRS had with these before? I would certainly ask and make sure your sugeons have a good success rate. I think this is much more common than we think. It's just that no one wants to discuss it because it feels so embarrassing. Fistulas can occur in many places in the body but when things have to do with our "waste products" it becomes attached to all kinds of difficult feelings. I'm glad things are better for you overall. I have to remind myself to celebrate every little progress.
B, I'm glad things are back to normal for you; having sex with your husband is such an important connection. Having that kind of a break certainly tests anyone's relationship.
I have decided to try to come off my Lexapro which I've found to be another challenge. I'm getting a lot of the depressive feelings I've had in the past and really not wanting to revisit them. I think I need to face some of those feelings to get back to normalcy but it also includes some night anxiety, dreaming about my leftover 'issue', continuing to feel a lot of anger regarding my first physician. I think I have to expect some of this and be patient, keep busy, and try not to get frustrated with my sphincter issue. I can work and do most things I used to but have to pay close attention on how I feel rectally. Bathrooms feel way too much of my life. Today I get my hair done which usually perks me up!
Thanks for listening,
Penny