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Old 01-08-2009, 10:41 AM   #1
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Katliz HB User
Thumbs up rebuilding anal sphincter muscle from leg muscle

Just found this website before going in for an overlapping sphincteroplasty on 01/02/09. Found alot of useful info from many of the women who contribute to this site. When I went ahead with this surgery I had a pretty good idea what to expect. I thought that my life was going to be given back to me and I could finally live outside with people again and not be confined to my bathroom, diapers and a backpack filled with baby wipes, butt paste, underwears, change of clothing, well I am sure all of you had the same experiences.
The Dr. opened me and just closed me right back up!!! My sphincter muscle is 90% gone. He has no clue why it should be so damaged to begin with. No vaginal deliveries, 4 c-sections and no prior rectal surgery in the past. Odd? I am so thankful that he can do something else for me. If anyone has any knowledge pertaining to the sphincter muscle being rebuilt from the leg muscle, please share with me. Go for post op check up on 02/09/09. Then we will start preparing for this next procedure. Need to know as much as possible and I believe this is a great start. Thanks everyone, Katliz

 
Old 02-03-2009, 05:00 PM   #2
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Re: rebuilding anal sphincter muscle from leg muscle

Hi Katliz,

I am missing one third of my external anal sphincter muscle. No vaginal deliveries, just two C-Sections. I must have been born with it. I also have fructose malabsorption, and a non-relaxing pelvic floor/sphincter (treated by physio to some extent).

This has led to straining for years and years, and I have therefore damaged the nerves in the rectal area big time.

Result: Often incomplete evacuation and really bad odor, whether I empty or not. This odor could also be due to my external sphincter not closing properly. I don't know if it is leaky gas or just the odor of my internal bowel. I am creating an odor in my retail workplace and it is so bad, I get about ten comments a day. It is a "chemical" odor not a fecal odour. Strange! I am now taking four weeks off because I just can't cope anymore. I need to leave permanently. I really can't work because my pelvic floor/bowels are shot.

Ten years ago surgery was described to me, whereby they give you a pump to open and close your anal sphincter as needed. Back then I was terrified of the thought and they didn't think I needed it. Now I am going to discuss it.

However,your operation sounds better. Have you had it yet? How is it going? I will even travel overseas to fix this.

 
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Old 02-06-2009, 09:09 AM   #3
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Lightbulb repairing damaged sphincter muscle

Hi NoRelief,
I really know what you are going through and it is not fun. I have left work and have also given up my old life. Sphinterplasty will not help us since our anal muscle is so damaged. The Dr said it is like taking a rubberband that is stretched out and trying to pull it tight again. It just does not work. Is that the last time that you went to see a Dr for this problem is ten years ago? I had three specific tests done, which showed that I had a major problem down there plus the rectal exams. But to be honest with you, they don't know to what extent until they open you up. On Feb. 10th, I will be having a temporary colostomy bag put in. I found this out at my pre op apt on the 29th. I have no control over my bms, gas, odor and what not. My Dr said if he puts a stoma in, it will divert all the is going on down there and I will heal faster so he can get on with rebuilding the sphincter muscle. Now I was not to crazy about taking the leg muscle and rebuilding to begin with. But I realize that I have to do what I must do to get there.
My Dr had mentioned that about a pump and they implant a chip???? That was ten years ago. Just think how many more procedures they have now. Also consider that ten years is a long time and it is probable that you have more damage and your body is showing that to you by all these problems. You need to come to the states. I go to the Cleveland clinic in Ft Lauderdale Fl. People come from all over the world to have procedures done. It sounds to me as if you are at that point that I had reached. My life as it is today revolves around my problem. I am willing to do anything to have even a little bit of that old life back. I will keep you posted and you do the same. If you want more info on Drs or tests just let me know. You are in my prayers, Katliz

 
Old 04-04-2009, 04:47 PM   #4
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Re: repairing damaged sphincter muscle

Hi Katliz,

Have you had this surgery yet? Please give me an update on your situation. I am desperate!! Here is my situation:

I am 42 years old and basically have close to zero sphincter muscle left after an extremely long and tormented birthing ordeal of 9lb 11oz baby 10 years ago. I have uncontrollable gas and alot of it. I can never have a full bowel movement (there are always broken pieces left inside my rectum (which is what is causing the contant, stinky, loud gas). Trying to have a bowel movement takes a long time or several trips to the bathroom and alot of staining (feels like I am going to bust a blood vessel in my head, which is not good either since I have a first degree vaginal prolapse). I eat healthy and have tried fiber pills and nothing helps. No doctor has been able to help me yet. They all act like I have IBS (which I do not believe) or they act like I making the situation out to be worse than what it is. I do not feel like living anymore. The situation is sooooo embarrassing.

Thank you,
Emily

 
Old 04-08-2009, 05:33 AM   #5
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Re: Katliz, please respond to this if you can

Please read the prior post asking about the leg muscle to anal muscle repair

 
Old 04-09-2009, 04:58 PM   #6
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Re: rebuilding anal sphincter muscle from leg muscle

Dear Emily 42,
I am so sorry it took me so lomg to get back to you. I had my 3rd surgery this year so far and it really has taken alot out of me. I had the sphincteroplasty in Jan., that is how I found this website. In Feb. I had an laproscopic loop ileostomy. My sphincter muscle was 90% gone and the discharge and drainage was not allowing me to heal from plasty so the Dr. diverted it enough to heal for this 3rd procedure. It is called a gracioplasty and it is to treat fecal incontinence. What they did is take my hamstring muscle out from my kneecap to my thigh and then graft it on the outside of your existing sphincter muscle (you know the one that works so well for us!!!) I spent one week in the hospital and this Sunday I will be home for two weeks now.
Now to share a couple of things that I learned from the constant nonstop gas that I had before the surgeries is to take chlorophyll capsules(60 mg) 2tabs a day followed by large glass of water. This will kill off the bacterial germs that produce foul smells. It takes awhile for it to work but it is worth it. Tell me what kind of diet you are on and are you very constipated by nature? Do you take a fiber supplement? Write me when you can. I can go into more detail but I am not sure into which direction. You need to speak to someone that has gone through things that either you have or have not ventured to get you through these tough times and to help you make a confident decision. Your in my prayers, Katliz Have to get off, sorry, in alot of pain right now

 
Old 04-10-2009, 09:53 AM   #7
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Re: rebuilding anal sphincter muscle from leg muscle

Hi Katliz,

I am so glad to hear from you. I have never been constipated before the last couple of years. I take Align (good bacteria pill) every day and take Miralax (3/4 of a capful daily) and also fiber pills (1 or 2 a day to help bulk the bowel movements so that I have a little time so that I don't crap my pants). If I don't take the Miralax, I end of not being able to go to the bathroom, but it's in me and I start having very smelly gas and alot of it. The Miralax helps me to go, but it gives me gas, just not as smelly because it makes me have a bm everyday. The gas that I have is VERY LOUD, therefore very embarrassing and I literally have no control over it. I quit my job in 2006because of it. I just can't believe, in the day that we live that there is not a drug out there that disapates the gas, so that when it comes out it does not come out with such velocity.

I have so many questions for you. How old are you? Did childbirth do this to you (basically tell me your story)? How long have you suffered with this? What was your doctor's name that did the surgery? What did he tell you the outcome would be for the surgery? Will you be continent of stool and GAS? Will everything there once work pretty close to normal, so that you don't even think out your bottom, bms, or gas? Will your leg function as normal since they removed that muscle? I know that you are currently not working because of the surgery, but did you work prior to this, if so do you plan on returning to work? If you do, what type of work do you do (sitting at a desk, or standing). I am not sure if people with problems such as mine would qualify for disability, but I feel as though I should. How can one work with gas that happens every 1-3 minutes apart and is EXTREMELY LOUD and sometimes smelly? Sometimes I feel so hopeless.

I told my husband about you and your surgery last night. I said that you seem like a pioneer for me in my quest. Thank God for you!!

p.s. I will give the chlorophyll pills a try, that will help with odor, just wish there was something to help with the loud roar!!

 
Old 04-11-2009, 12:16 PM   #8
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Katliz HB User
Re: rebuilding anal sphincter muscle from leg muscle

Dear Emily,
I guess what I was trying to ask you is if you have any control over your BMs? Do you feel the sensation and the urge to go? I have a hard time understanding since you say you have so little time to get to the bathroom. I so understand the gas. I was a dispatcher for a security company. I sat for eight hours and sometimes I had no choice but to stay on the phone with th PD or FD. What is more important now, going in your pants or someones house burning down. No really, before I left work I didn't have any sensation or urge to go. It just came. So many times I have been embarassed that I left work and stayed in the house, in my room, in my bedroom. I was so depressed that I was put on an antidepessant for the past year. As for the gas I can say that is how it started before things went downhill. I would be at work or wherever and it would just come and come and come. The odor was horrible but the Dr told me that is because the fecal matter is just sitting in the rectum and the body is trying to pass it but it can't. Even though I was loose, matter would always remain inside. The more matter there was the more odor there was. It also weighs very heavy on what you eat. Eggs and asparagus among a list of others you should stay away from. Your sphincter muscle is gone and I am sorry to say this to you but it will only get worse with time. I believe now that trying to hide it from everyone and waiting for my condition to improve and doing everything within my power to change what I couldn't change consumed what ever quality of life I had. When I finally went ahead and decided it was all or nothing that is when eveything started to change for me. I was very afraid of the unknown but I have a supportive husband that could no longer see me suffer in this manner. It sounds like yours is the same way which will make things easier to face. I also have grown children to support me and my Mother who is staying with me again for this surgery and is good company. I am 54 yrs old and have 4 children. I lost my oldest girl Kari Ann in 2006 and I know that the stress of that did damage. I had 4 c-sections and no prior rectal surgery in the past. The DR cannot figure it out and has decided that I was born that way. I did have reconstuctive bladder surgery when I was 12 yrs old but he said that one has nothing to do with the other. His name is Dr. Steven Wexner. He is the Chairman, Dept of Colorectal Surgery at Cleveland Clinic Hospital in Weston. You can find him under the hospitals website and he has written I think about five textbooks which you can find on the internet.
It is still to early to tell what the outcome will be. I am suppose to have a normal sphincter muscle just like anyone one else. No more passing of gas or stools a I pray for the day I can say that I am leakage free. As for my leg, I had all the stitches out a couple of days ago. I found out last night laying in my bed if I flexed the leg where the hamstring was that the sensation of flexing is on the perianal graph. Something is working!!!!! How cool is that!!! Write me back with all your info, age, children past damage ect and any more questions you would like answered. Have a blessed Easter. All things are possible through him. Katliz

 
Old 04-13-2009, 10:08 PM   #9
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Re: rebuilding anal sphincter muscle from leg muscle

Hi Katliz,

How are things going with you and your surgery?

As for me, I do not have sensation in my gut that I am going to have a bm. I only have the sensation in my bottom area telling me that I have to get to the bathroom. I generally have control of bms. Only soiling (from not being able to get clean when I wipe). If I have any more than soiling it is generally not more than let's say the size of a half dollar. My biggest issue is the constant gas, because I have small pieces of poop left inside my rectum. Here is my story in a nutshell:

43 year old female

1983 1st vaginal delivery (no problem 7lb 1oz baby/ episiotomy was done and forceps and suction were used). I was 18 years old at the time.

1998 2nd vaginal delivery (big problem 9lb 11oz baby/extremely long induced labor/3rd degree episiotomy/forceps were used). I was just shy of 33 years old. I was left with a large gaping vaginal opening and immediately began having stool incontinence.

I then saw another doctor that a coworker had recommended and in 1999 she did a repair episiotomy and anal sphincter repair. She said that the sphincter muscle had been so thinned out that she wasnít sure how much help she was able to give me. During the recovery period, while lifting the baby, one (I believe) of the stitches popped. Incontinence was not an issue anymore but gas was starting to be an issue (but not too bad).

By 2006, I started to have incomplete evacuations of stool. My rear would not come clean and the gas was becoming VERY bad (loud and smelly). The odor was really bad (because of the stool that remained inside me). Because of the gas issues, I quit my job. I have also been told that I have a vaginal prolapse. Since 2006 nothing has changed. I am desparately seeking relief of the incomplete evacuations. I have tried Miralax, Amitiza, Align, fiber pills, and warm water enemas, the latter has provided the most relief, but I have to do the enemas everyday (sometimes more than once) and I still have some bad gas.

I am not sure if additional surgery would help or would it make my pelvic floor muscles weaker than what they currently are. I definitely do not want to be worse.

I live in Illinois, but am willing to travel if someone believes that they can help me. Please let me know if you can.

BTW, my proctologist told me to stay away from surgeons and just try to manage the problem. His thought was that surgery would make matters worse (I have a hard time imagining worse). He did however say that if I chose to go the surgery route he would recommend Dr Wexner (the one that did your surgery)! Tomorrow my gastronologist office is supposed to be calling to set up a sphincter ultrasound (at my request) and she wants me to try physical therapy. I know how far gone my muscle is though (she just doesn't understand) and no amount of pt is going to bring it back. This is so debilitating and flustrating!! Do you think what I have told you so far that I would be a candidate for your surgery? Once I get the results from from the sphincter untrasound. I will let you know those. Thanks so much for your correspondence.

Emily

 
Old 04-13-2009, 10:15 PM   #10
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Re: rebuilding anal sphincter muscle from leg muscle

Dear Katliz,


I forgot to say in my post that I am so very sorry for the loss of your daughter. If you ever need to share any feelings/struggles that you are going thru, please do so. I will always listen.

God bless you!

Emily

P.S. Please read my post prior to this one.

 
Old 04-21-2009, 05:13 PM   #11
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Katliz HB User
Re: rebuilding anal sphincter muscle from leg muscle

Dear Emily 42,
I just read your last post. Had no idea it was there. I so appreciate your kind words and I thank you for for thinking of me. I mentioned it because I truly believe that stress will increase the problems that we already have, if that makes any sense. When you said that you left your job because of the gas and odor problem you were having, I am sure that before you left that you were overwhelmed with the whole situation.. Before this last surgery I felt obsessed with this whole problem. That is why you reach a certain point and decide that although you don't know what the outcome is going to be, it has to be better then what your situation is now. I cannot answer for you whether the surgery is for you or not. I can point you in a direction to the person and persons that can help you with that decision.
There is special tests that you need to go through. They were only offered at the Cleveland Clinic and that is how I started. I will say that I had to wait for nearly two months to see Dr. Wexner. He examined me and could tell right off the bat that there was no muscle tone left in the sphincter muscle. I then went back for an anal ultrasonography, anal manometry with rectal capacity and compliance testing, and anal electromyography with bilateral pudendal nerve terminal motor lattency assessment. All of these tests are done by Drs in the hospital and the results combined put you on a scale of incontinence. I was a 16 on the scale and Dr Wexner has his own websites with his scales and findings. I have a 89 degree defect in my internal and external anal sphincter, a paper thin anovaginal septum and low resting and low sqeeze pressure. Why don't you e mail his office with your history and let him review it. I am sure he can help you. Do not have that much time to write tonight but I do have so much more info to pass to you. Write me a nd tell me what you think of everything so far O.K.? I will get back with you in the next couple of days and we can talk more in depth about what you are going through and how you are feeling. Believe me I can understand everthing you are going through mentally and all the symptoms you have.
Take care,
Lets talk soon, Katliz

 
Old 04-22-2009, 06:24 AM   #12
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Re: rebuilding anal sphincter muscle from leg muscle

Dear Katliz,

Oh my gosh, I was soooo worried about you since it had been a while since I had heard from you. I am so glad that you are ok. How are you coming along with the surgery? Does Dr Wexner think that you will eventually be continent of stool and GAS? When do you go back for a checkup? How far is your town from the Cleveland Clinic? How many times did you have to go there from your initial visit to the surgery? I live near St. Louis, MO and so for have had the anal manometry with rectal capacity and in May I go for a anal ultrasound. What is the compliance testing and the anal electromyography with bilateral pudendal nerve terminal motor lattency assessment? Do either of these test hurt? I think that I will get all the testing done here and once I have all that done I will have my doctor refer me to and send my file to Dr. Wexner. I know what you mean about being obsessed with it. My problem is always on my mind every waking minute. Before your surgery did they try physical therapy for you? That is another thing my dr wants me to try. I also go see a dr in May who specializes in vaginal prolapse, since a couple of years ago I was told I had a 1st degree prolapse (it's probably worse now). Are you planning on ever returning to work or not? Sorry, this post is a little jumbled. I am just writing as things come to me. Thank you for your correspondences.

Emily

 
Old 04-23-2009, 05:24 AM   #13
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Katliz HB User
Re: rebuilding anal sphincter muscle from leg muscle

Dear Emily42,
I am doing much better, thank you. Now that all the stitches were removed from my leg and anal area I can walk and sit now without so much pulling on the tender areas. How are you feeling? How is the gas and evac situation doing? You throw a lot of questions at me(believe me I am thrilled-don't feel so alone) and I print the page and then I think about you alot throughout the day. I read your e-mail just before we left to go to the Drs office(not for me Ha Ha!!) This was our family Dr who gets all the reports on all tests and surgeries ect that are done on me. They look and ask questions on each surgery that I have but will tell me they have no idea of what I am talking about. This surgery that you are considering, they have never heard of that being done on any of their patients in the past and I do not live in a little town where the health care is inept. I was seeing my gastro dr for two years with this problem and then was passed on to a rectal surgeon in WPB. I went to him twice. First time he told me I had puritis and two months later I walked out of his office crying when he told me I had to go to biofeedback, surgery or a colostomy bag if the latter didn't work. Just from the exam I had no muscle tone. Do they tell you that right off the bat when you are examined? How do they examine you? Laying on your side on the table or on your knees bent over the examining table? That is how I ended up at the Cleve clinic which is a 200 mile roundtrip for me. I do not feel very confident that these tests that you need to go through will be offered in your area. What I am trying to say is that specialized surgery goes hand in hand with specialized testing. Alot of people that are treated there come from all over the world. I go back on the 11th for my post op and if you want me to ask them how you could go about it I will inquire for you. Do you still have your children at home? At least one, no? How old are they? You never told me what you do for a living (did). I also wanted to ask you about your vaginal prolapse. I know he said he had tacked mine back up in the pelvic area and even though I am not a dr I would bet money that our insides pushing down on our intestines and rectum and vaginal wall does not help us when our anal muscle is so gone.
Because of the ileostomy I have no gas or pain or incontinence down below. I know that the graph is working. It is funny because when I move my hamstring muscle in my leg I can feel the graphted muscle pull down on the anal muscle it is attached too. It is free of infection, deep red in color since the circulation is good and I am having sensations down there which I have not in years.
Yes I will be going back to work and school when this is behind me. At least now I feel there is hope and I won't(will not) live this so called life. You know that if you decide to go ahead with this I do live in SUNNY FLORIDA and I do have an empty guestroom. I will write back to you about the testing. Remember the test you had, that was not bad. The nerve test was quick but painful. Have to go through my papers and see whats what.
Talk to you soon, Katliz

 
Old 04-23-2009, 08:22 AM   #14
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Re: rebuilding anal sphincter muscle from leg muscle

Hi Katliz,

I am doing the same, everyday incomplete evacuations, and gas. I am still taking the Miralax, Align, Digestive Advantage for gas, and now the chlorophyll pills. I also sometimes take Phazyme gas pills too. I am not really sure why I take all of these (out of desperation, I guess) since it really isn't digestive gas, it's that I have small amount of stool remaining in the rectum that causes the gas. If we are going someplace, I have to do a warm water enema too, and this sometimes still does not get it all out, but there is less gas. The gas that does happen after that, I just try to squeeze my butt cheeks together to keep it in, (sometimes works, sometimes doesn't). God, I never thought that I would have to discuss such stuff. I feel like I have lost some dignity of my life (sometimes I am VERY bummed out about this). I cried the other day for half of the day. I had been working at an insurance office before this happened. I have my license to sell/service insurance. I have not worked since Dec 2007. Thank God, for my husband!! Since leaving that place of employment I thought I could take a class at a time at college. My husband wanted me to do the registered nurse program. I got thru all the algebra (elementary - college) and now I am in a chemistry class. I told him the other day that I don't think that I will be able to do it. The clinicals are 8 hours a day and there is no way that I can manage the gas situation for that long. I am considering changing back to the social work program (I had 60 credit hours toward that). I do not think that any job that would require being on your feet is a good job once you have these issues, even if they are or can be surgically repaired. I have a 10 year old daughter that lives with us (the dumb dr that I had, when I had her, is what caused my issues). She is a very sweet girl and I love her very much. I do worry about her though because she knows that her birth (9lb 11oz) is what caused my issues. The day that I cried half the day, she did not ask me what was wrong, she knew. I heard her awake in her bed after 11pm (I know that she could not sleep because of this) and it was a school night. I hate this. When I am examined rectally, it has always been laying on my side. The doctor that I am seeing about the vaginal prolapse does a procedure with a skin graft from your rear and uses that skin to attach to bone on the inside (something like that, because they have found that the sling method alot of times comes back down). I will tell you more about that once I see that dr in May. I think that they won't fix a prolapse unless it is a 3rd degree (outside your body), but maybe with my issues they will make an exception. I think that if I have to have that done, that they should actually cut me open, I don't think that I should have anymore trauma to my bottom area than neccessary.
Will you eventually be removed from the ileostomy? If so, does they doctor think that you will be continent of stool and GAS? Katliz, I must say that I am so scared that I will end up having to have a colostomy. I don't know that I can do that. I guess I feel like I have already lost so much dignity and I am scared about feeling that I will lose my femininity, basically I don't want it to change the intimacy that I share with my husband. Maybe it doesn't, but the fear is killing me. I don't want you to go out of your way at your dr's visit for me. To me going to the doctor is like going to the grocery store (you try to remember everything and as soon as you get to the parking lot you think of 10 other things that you forgot to get/say). I want you to just take care of yourself and get better. I have typed up a synopsis of my story and issues and have that prepared to fax to Dr Wexner's office (after my next dr's appt). By the way, how did you hear of Dr. Wexner? I am so worried that he will not be able to help me or do this surgery since I am not uncontinent of stool. I feel like I am in this limbo state where nobody can help, until I get worse, which is like a horrible feeling, like dying a slow death with people around and nobody can help. You are so kind, to offer your guestroom to me. I may have to take you up on that, we'll see how all this plays out. No matter what, I would like to meet you someday, it would be nice to put a username with a face.

Thanks,
Emily42

 
Old 04-29-2009, 08:45 PM   #15
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Re: rebuilding anal sphincter muscle from leg muscle

Hi Katliz,

I am wondering how you are doing? Did you get a chance to read my prior post here too? Please update me on how you are doing.

Thanks,
Emily42

 
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