Flower,
Just to answer your question. Before my sphincteroplasty I had occasional staining, maybe twice a week after a long walk. After I now have constant leaking after a bowel movement, maybe for 2 hours more or less and now if I'm out for a walk I can have a lot more than a stain, with little control. I just try like the dickens to only have one movement a day and that in the morning but that's not always perdictable. Very frustrating.
Penny
Just to answer your question. Before my sphincteroplasty I had occasional staining, maybe twice a week after a long walk. After I now have constant leaking after a bowel movement, maybe for 2 hours more or less and now if I'm out for a walk I can have a lot more than a stain, with little control. I just try like the dickens to only have one movement a day and that in the morning but that's not always perdictable. Very frustrating.
Penny
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Penny, I was wondering what it was that led you to the spchto-plasty.....I was getting pretty much incontient (sp) all the time and had enough and thus is why I went in for one. I wasn't just staining, I had to run run and many times did not make it to the bathroom, it was very frustrating. But a RVF wasn't part of the plan at all.....
B. that is great news....if there is no leaking even w d. then it prolly is healed up ! I am just very leery to get my hopes up at this time, my husband was like all excited and so was the Dr...but I was just like..ummm ok. I still will be wanting either a picture or real concrete proof before I go in for reversal......
Thanks everyone
Flower
B. that is great news....if there is no leaking even w d. then it prolly is healed up ! I am just very leery to get my hopes up at this time, my husband was like all excited and so was the Dr...but I was just like..ummm ok. I still will be wanting either a picture or real concrete proof before I go in for reversal......
Thanks everyone
Flower
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Yay B,
I am so glad for you. What a relief it must be to have very good days that keep coming. I really thinks our body is always working to do the right thing. Time to look forward. It's great to hear the successes.
I am still working on my issue. Has anyone posting ever used the Cleveland Clinic? I am debating over a second opinion re: my sphincter issue. Acupuncture seems to have no effect so far. I have to get back to kegels. I'm sure that's not a good thing-stopping doing them, even for the flu. Even on days when there's not a lot of leakage other problems seem to crop up. Trying to put things in perspective.
Penny
I am so glad for you. What a relief it must be to have very good days that keep coming. I really thinks our body is always working to do the right thing. Time to look forward. It's great to hear the successes.
I am still working on my issue. Has anyone posting ever used the Cleveland Clinic? I am debating over a second opinion re: my sphincter issue. Acupuncture seems to have no effect so far. I have to get back to kegels. I'm sure that's not a good thing-stopping doing them, even for the flu. Even on days when there's not a lot of leakage other problems seem to crop up. Trying to put things in perspective.
Penny
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Penny, I went to Cleveland Clinic to have the spchintoplasty done and like I said , that was a success except for the fistula popping up. Dr. said the muscles are intact where he fixed them.....Would I do it again? Not sure, I do know as I was at the point where choices weren't really a factor, something had to be done sooner or later and I chose sooner.
I went to James Church...a really super nice, doctor and he is well rspected there. go on the website for Cle and research him. My second choce to repair fistula would be A Dr. Hull there. But like I said, go on website and read up on the docs. As far as care and treatment there, it IS world class care, Everyone there , right down to the transports to and from surgery were excellent and nice. The nurses and aides on the colorectal floor are the best and I was told by an employee at hospital from different dept. that if she had to be a patient there, that floor is where she'd want to be. I had a good experience there as far as people, and if it wasn't for the RVF, it would have been a complete success. Hope this helps towards you making a decision that is best for you by you.
take care
Flower
I went to James Church...a really super nice, doctor and he is well rspected there. go on the website for Cle and research him. My second choce to repair fistula would be A Dr. Hull there. But like I said, go on website and read up on the docs. As far as care and treatment there, it IS world class care, Everyone there , right down to the transports to and from surgery were excellent and nice. The nurses and aides on the colorectal floor are the best and I was told by an employee at hospital from different dept. that if she had to be a patient there, that floor is where she'd want to be. I had a good experience there as far as people, and if it wasn't for the RVF, it would have been a complete success. Hope this helps towards you making a decision that is best for you by you.
take care
Flower
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Thanks for the info, flower. Do you live nearby or did you have to fly in? I'm wondering, too, about recovery if you don't live in the area. If anything comes up, whcih it did for me, you'd have to fly back, no? Maybe there'd by some way of staying nearby until you're recovered? At the least I think I could go and have an evaluation done. I did look up the MD's. Something to think about. I did want to ask if, before the fistula was evident did you have some successful use of your sphincter with no leaking or couldn't you really tell? Thanks again. I'll keep the names handy until I figure out what I want to do.
Penny
Penny
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Penny,
I live 3 hours away from Cle Clinic so we can drive it out and back ina day no problem. They have a guesthouse on campus that we have stayed at before, wasn't real expensive and may have better rates for longer stays. They would be able to advise you at the hospital better. I never have had a chance to use my newly repaired spchinters as the RVF developed right away. Doc says they are fine...............but you always wonder. He said the fistula was "gone" closed over with a thin layer of skin and again, I wonder..........a few days after that visit i started my period and I use tampons.....Is that a good idea or not? Could that have reopened the tract? I seem to have more mucus coming out of there now that looks an awful like the rectum mucus I expell every so often...I'm so confused that I don't even want to think about it. I talked to my General Surgeon last night and he said too, we must be absolutely sure the RVF is gone before he does the reversal....So, any one what is the best method of determining this? Maybe I should get used to the ostomy.....i don't know.....need to think this thru.....
well, hope everyone is well, site has been quiet so good news?
Flower
I live 3 hours away from Cle Clinic so we can drive it out and back ina day no problem. They have a guesthouse on campus that we have stayed at before, wasn't real expensive and may have better rates for longer stays. They would be able to advise you at the hospital better. I never have had a chance to use my newly repaired spchinters as the RVF developed right away. Doc says they are fine...............but you always wonder. He said the fistula was "gone" closed over with a thin layer of skin and again, I wonder..........a few days after that visit i started my period and I use tampons.....Is that a good idea or not? Could that have reopened the tract? I seem to have more mucus coming out of there now that looks an awful like the rectum mucus I expell every so often...I'm so confused that I don't even want to think about it. I talked to my General Surgeon last night and he said too, we must be absolutely sure the RVF is gone before he does the reversal....So, any one what is the best method of determining this? Maybe I should get used to the ostomy.....i don't know.....need to think this thru.....
well, hope everyone is well, site has been quiet so good news?
Flower
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hey Flower-
I was so scared, like you, about whether to get the reversal or wait. I worry a little each time I go to the restroom, but for the most part things seems good with me-once in awhile, since the reversal I noticed a little bit of fecal matter-tiny, tiny amount come out--and I freaked, but I do believe mine is still healing up-that it is thin and once in awhile stuff may go through--but have faith--believe in yourself--and how you are feeling. I believe that there are good outcomes, sometimes it just takes time.... Thinking of you, B
Be good all!!!!!!!!how are you Bea and Penny?
beegirl
I was so scared, like you, about whether to get the reversal or wait. I worry a little each time I go to the restroom, but for the most part things seems good with me-once in awhile, since the reversal I noticed a little bit of fecal matter-tiny, tiny amount come out--and I freaked, but I do believe mine is still healing up-that it is thin and once in awhile stuff may go through--but have faith--believe in yourself--and how you are feeling. I believe that there are good outcomes, sometimes it just takes time.... Thinking of you, B
Be good all!!!!!!!!how are you Bea and Penny?
beegirl
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Hi Bee,
I am doing okay. I had a good week and then tried to go for a walk yesterday with my sister and it didn't happen. I think I have to bite the bullet and just do a water enema whether I feel anything or not and maybe that would help me get my exercise. Very frustrating. On the good side I finally sat down and wrote the letter to the Board of Registration in Medicine about my awful doctor. Rereading his letter I think I have the ablity to sue him for slander if I had the wherewithall. I really think he has some loose marbles, clinically speaking, and should not be practicing medicine.
How are you doing? You sound better over all which is so good to hear. I had my last tai chi class yesterday. I think it was actually hurting my back. I'm moving on to catarac surgery and exercises for my arthritis. this aging thing requires some amount of bravery! And yet I compare myself to others and I think I'm doing pretty well.
take care,
Penny
I am doing okay. I had a good week and then tried to go for a walk yesterday with my sister and it didn't happen. I think I have to bite the bullet and just do a water enema whether I feel anything or not and maybe that would help me get my exercise. Very frustrating. On the good side I finally sat down and wrote the letter to the Board of Registration in Medicine about my awful doctor. Rereading his letter I think I have the ablity to sue him for slander if I had the wherewithall. I really think he has some loose marbles, clinically speaking, and should not be practicing medicine.
How are you doing? You sound better over all which is so good to hear. I had my last tai chi class yesterday. I think it was actually hurting my back. I'm moving on to catarac surgery and exercises for my arthritis. this aging thing requires some amount of bravery! And yet I compare myself to others and I think I'm doing pretty well.
take care,
Penny
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Hey Ladies:
I wanted to get your opinion. I went and saw my gyn the other day for my pap smear. He called me a few days after and told me that he spoke to a Urogynecologist in the area about my fistula. This doctor mentioned the plug procedure to my gyn and said he has had success with this. My gyn thinks I should go and see him for another opinion. I have read mostly unsuccessful stories about the plugs on line.
My RVF doesn't seem to be bigger from my failed flap repair. It has been over 4 months now. I know it must still be there because I do experience gas hear and there. I was sick 2 weeks ago and was put on Amoxicillian which made me sick to my stomatch somewhat. I had diarrhea 2 times while taking the medicne. Stool didn't pass at all the first time, and then a little leaked through the second time. I don't know... mabye the plug could work for me because my fistula doesn't seem worse. My gyn said they wouldn't have to do any cutting or anything so that's good. Is it worth a try?
CJ
I wanted to get your opinion. I went and saw my gyn the other day for my pap smear. He called me a few days after and told me that he spoke to a Urogynecologist in the area about my fistula. This doctor mentioned the plug procedure to my gyn and said he has had success with this. My gyn thinks I should go and see him for another opinion. I have read mostly unsuccessful stories about the plugs on line.
My RVF doesn't seem to be bigger from my failed flap repair. It has been over 4 months now. I know it must still be there because I do experience gas hear and there. I was sick 2 weeks ago and was put on Amoxicillian which made me sick to my stomatch somewhat. I had diarrhea 2 times while taking the medicne. Stool didn't pass at all the first time, and then a little leaked through the second time. I don't know... mabye the plug could work for me because my fistula doesn't seem worse. My gyn said they wouldn't have to do any cutting or anything so that's good. Is it worth a try?
CJ
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Hi everyone, Beegirl....Do you have chronic diarrhea or are you pretty normal with your bowel movements as far as being firmer rather than loose. I have diarrhea ALL THE TIME, no matter what I eat, what type of diet I try ( low res. high fiber, low fiber, tree bark, dandelions..whatever..!) Everything turn liquidy in me, doctors are baffled. So that is why I am afraid to get the ostomy reversed....If there were to be any leaking thru fistula...it would be 5-6 times a day depending on how often I eat. I need to be 100 % this sucker is closed off. CJ...a plug, if there isn't any cutting.....I would be tempted, but I too haven't heard success stories, but everyone is different.
Right now I am too busy to even think about the next step until I go back To Cleveland in Jan. This is the first time in 20 years I have been able to eat as I want and go places and not worry about not getting to the bathroom in time.....I am afraid this ostomy is becoming a crutch.......So I'm in purgatory right now !! I can even walk my dogs and not have to rush back home to use bathroom, dragging them the whole way, so they like Stella Stoma..hee hee
Penny, good luck with your issue you are working on.....and everyone take care and stay up beat
Flower
Right now I am too busy to even think about the next step until I go back To Cleveland in Jan. This is the first time in 20 years I have been able to eat as I want and go places and not worry about not getting to the bathroom in time.....I am afraid this ostomy is becoming a crutch.......So I'm in purgatory right now !! I can even walk my dogs and not have to rush back home to use bathroom, dragging them the whole way, so they like Stella Stoma..hee hee
Penny, good luck with your issue you are working on.....and everyone take care and stay up beat
Flower
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Flower,
I get diarrhea fairly often... I would say it is a constant struggle- and the amount seeping through, even with diarrhea, is so small.... sometimes nothing. I am ok with this-as I am trying to move on after everything...Hope you are doing well, b
I get diarrhea fairly often... I would say it is a constant struggle- and the amount seeping through, even with diarrhea, is so small.... sometimes nothing. I am ok with this-as I am trying to move on after everything...Hope you are doing well, b
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Hi b,
I'm glad things are going well for you. I have to share that it's just been recently that things are becoming more normal consistancy wise. This is since February. Maybe it's taken me this long for my intestine to behave normally with all different types of food or maybe something else altogether. How long has it been since your reversal? It seems to take a while for our bodies to get back to doing what they were made to. I think I'm sitting on more info now than my MD who said my body wouldn't change from what it was 4 months ago. (no pun intended!) Take care,
Penny
I'm glad things are going well for you. I have to share that it's just been recently that things are becoming more normal consistancy wise. This is since February. Maybe it's taken me this long for my intestine to behave normally with all different types of food or maybe something else altogether. How long has it been since your reversal? It seems to take a while for our bodies to get back to doing what they were made to. I think I'm sitting on more info now than my MD who said my body wouldn't change from what it was 4 months ago. (no pun intended!) Take care,
Penny
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Beegirl,
Why do you get diarrehea often? Is it because of your reversal? I didn't think you had Chrons or anything like that.
I am still debating if I should have surgery again or just live with the small fistula. There are some days when I don't even know its there. UGH!! What to do???
CJ
Why do you get diarrehea often? Is it because of your reversal? I didn't think you had Chrons or anything like that.
I am still debating if I should have surgery again or just live with the small fistula. There are some days when I don't even know its there. UGH!! What to do???
CJ
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Hey Guys,
Penny-I think I am getting a little better as far as getting back to normal after reversal-it does take time... ugh
CJ-neh, I don't have crohns.I have ibs so my system has always been funny, but the reversal seems to have made it more stressed...so I get a lot of diarrhea. I think that if you can live with it and it is not affecting your quality of life, it isn't so bad...I mean the whole ostomy ordeal is definetly difficult-it is doable, but tough. I was so bad off that an ostomy was better than not having one, so to me it was ok. and like anything you get use to the ostomy, it becomes part of your routine and it isn't the end of the world-by any means.
Flower-how are you? How is the ostomy? any news on reversal?
Bea-how are you-think of you often. b
Penny-I think I am getting a little better as far as getting back to normal after reversal-it does take time... ugh
CJ-neh, I don't have crohns.I have ibs so my system has always been funny, but the reversal seems to have made it more stressed...so I get a lot of diarrhea. I think that if you can live with it and it is not affecting your quality of life, it isn't so bad...I mean the whole ostomy ordeal is definetly difficult-it is doable, but tough. I was so bad off that an ostomy was better than not having one, so to me it was ok. and like anything you get use to the ostomy, it becomes part of your routine and it isn't the end of the world-by any means.
Flower-how are you? How is the ostomy? any news on reversal?
Bea-how are you-think of you often. b
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Hi all - beegirl, Penny flower, CJ
I'm sorry it's been a while - I did try and post a couple of weeks back and it failed and as I'd written a bit it was too much to have lost it all.
Sadly my fistula is worse since this last surgery and even with the ostomy I get formed stool through the fistula. I recently had a stomach bug too which was horrible to deal with - the smell is so much worse. I am going to get my second opinion soon - I had put my head in the sand for a while because I just wanted to get on with life but now I am ready to go back and fight. I can't believe I have both the fistula and the bag to cope with. I would have the reversal but I want to try and get the fistula back to where to was before they did anything to me.
Flower I think you asked about a test ot see if the fistual has healed. The barium enema is very good though I'm not sure if it is possible with a closed ostomy. The enema is more diluted than a barium meal and the idea is they get x-ray with the rectum extended and then they try and get you to 'pass' a bit of the enema. This is good because using the muscles squeezes the enema in the right/wrong places - they then take another x ray and that should show if there is a problem.
Anyway I'm glad things are getting there for you beegirl. I also have IBS so I'm guessing when I get there my experience will be the same as yours.
Penny, and CJ - thinking of you.
Bea
I'm sorry it's been a while - I did try and post a couple of weeks back and it failed and as I'd written a bit it was too much to have lost it all.
Sadly my fistula is worse since this last surgery and even with the ostomy I get formed stool through the fistula. I recently had a stomach bug too which was horrible to deal with - the smell is so much worse. I am going to get my second opinion soon - I had put my head in the sand for a while because I just wanted to get on with life but now I am ready to go back and fight. I can't believe I have both the fistula and the bag to cope with. I would have the reversal but I want to try and get the fistula back to where to was before they did anything to me.
Flower I think you asked about a test ot see if the fistual has healed. The barium enema is very good though I'm not sure if it is possible with a closed ostomy. The enema is more diluted than a barium meal and the idea is they get x-ray with the rectum extended and then they try and get you to 'pass' a bit of the enema. This is good because using the muscles squeezes the enema in the right/wrong places - they then take another x ray and that should show if there is a problem.
Anyway I'm glad things are getting there for you beegirl. I also have IBS so I'm guessing when I get there my experience will be the same as yours.
Penny, and CJ - thinking of you.
Bea
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