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Anyone with MS Lost Sensory Nerves In Internal Anal Sphincter Muscle?
Hi,
I haven't been in here in a very long time. I think, not since the G.I. Doc at CC almost killed me with all those tests in 2 & 1/2 days.
My G.I. Doc at home said I have lost the sensory nerves in my internal anal sphincter muscle, and called my Neuro and told him it is an MS symptom.
Neuro wanted to see me, and when I went in for the appt. he said he didn't know why, my bowel wasn't functioning.
So, I am still living in Limbo-land, and it is not a pleasant place to live.
I have no urge to defecate, firm stool will force the muscle open, but it does not remain open long enough for me to empty. Now, if stool is too soft, it leaks through the internal anal sphincter muscle, and into my anus, and just sits there.
I'm still down to 76#s.
Just wondered if anyone with MS is experiencing the same thing.
Thanks,
Sheila
I haven't been in here in a very long time. I think, not since the G.I. Doc at CC almost killed me with all those tests in 2 & 1/2 days.
My G.I. Doc at home said I have lost the sensory nerves in my internal anal sphincter muscle, and called my Neuro and told him it is an MS symptom.
Neuro wanted to see me, and when I went in for the appt. he said he didn't know why, my bowel wasn't functioning.
So, I am still living in Limbo-land, and it is not a pleasant place to live.
I have no urge to defecate, firm stool will force the muscle open, but it does not remain open long enough for me to empty. Now, if stool is too soft, it leaks through the internal anal sphincter muscle, and into my anus, and just sits there.
I'm still down to 76#s.
Just wondered if anyone with MS is experiencing the same thing.
Thanks,
Sheila
I would suggest seeing your G.I. Doc, since it sounds like you still have nerve function-maybe he can help you avoid losing the nerve sensation. It is very miserable never to feel the urge.
Sheila
Sheila
Somebody mentioned the possibility that their sphincter was spastic. I have to wonder if that's my problem - I seem to have the hardest time, and if I do go, it's really a trial and hurts me. So I've started taking colace, and it's helping a lot, but it seems like a drastic solution.
Carol,
I'm sorry to hear we share that symptom, too. Miserable.
I've recently discovered that I am lactose intolerant, too. I cannot even eat yogurt.
I wish I had an appetite, so that I could really eat, and maybe things would just come out.
Thanks for praying-I'm doing the same.
Sheila
I'm sorry to hear we share that symptom, too. Miserable.
I've recently discovered that I am lactose intolerant, too. I cannot even eat yogurt.
I wish I had an appetite, so that I could really eat, and maybe things would just come out.
Thanks for praying-I'm doing the same.
Sheila
Sheila,
Yes, I do hurt higher up and sometimes even higher up than that... I have to be very careful with what I eat and how much... Certain foods will cause me terrible pain... I'm also very much lactose intolerant... Dairy is a no-no...
Some times I feel like I will eat until I'm full up all the way to my throat and then I can finally go to the bathroom... It's gotta go somewhere and with a little gravity it's gotta go down... lol
I'll be praying,
Carol
Yes, I do hurt higher up and sometimes even higher up than that... I have to be very careful with what I eat and how much... Certain foods will cause me terrible pain... I'm also very much lactose intolerant... Dairy is a no-no...
Some times I feel like I will eat until I'm full up all the way to my throat and then I can finally go to the bathroom... It's gotta go somewhere and with a little gravity it's gotta go down... lol
I'll be praying,
Carol
Thank you, shell. I know I will never get over losing her. She was one of a kind, so intelligent, perceptive and full of love & joy. I pray so often to Our Lord, to let me come home and be with my Sydney.
There are moments when I feel her spirit with me.
(((MANY MORE HUGS TO YOU)))
Sheila
There are moments when I feel her spirit with me.
(((MANY MORE HUGS TO YOU)))
Sheila
Sheila - I'm so very sorry for the loss of Sydney - hope time brings you peace, and smiles from all the precious memories and love you both gave each other every single day. Thinking of you and wishing that to come soon for you so you can heal that big heart of yours (((((more hugs)))) - shell
Hi, (again) Carol.
I was wondering, do you ever get constipation, where you can feel the stool very high up, and it simply won't move down?
That happens to me, very often.
It's like the muscles in part of the colon are not working.
Sheila
I was wondering, do you ever get constipation, where you can feel the stool very high up, and it simply won't move down?
That happens to me, very often.
It's like the muscles in part of the colon are not working.
Sheila
Hi, Carol.
It's been a long time.
My tummy doesn't cramp. I have no feelings, at all.
When stool is firm enough and the bowel is full, it will force the internal sphincter muscle open, to let out just enough, and then, it seems like it clamps shut.
With soft stool, it will leak out the internal anal sphincter, but fortunately, I still have control of the external sphincter muscle.
I had a dynamic proctography, and absolutely nothing would come out.
I wish my Neuro had listened to my G.I. Doc.
I'm praying for everyone, too.
Sheila
It's been a long time.
My tummy doesn't cramp. I have no feelings, at all.
When stool is firm enough and the bowel is full, it will force the internal sphincter muscle open, to let out just enough, and then, it seems like it clamps shut.
With soft stool, it will leak out the internal anal sphincter, but fortunately, I still have control of the external sphincter muscle.
I had a dynamic proctography, and absolutely nothing would come out.
I wish my Neuro had listened to my G.I. Doc.
I'm praying for everyone, too.
Sheila
I can really relate to all of you with this problem... I have 1 to 2 bowel movements per month... I don't think my muscles down there work either... I guess eventually when I'm completely full it pushes on out... I can usually tell because my tummy will cramp...
Sometimes I make it and sometimes I don't... Like right now I wouldn't dare go any where because I haven't had a bowel movement since the 23rd of June... It will be any day now so I'm stuck until my body decides it's full enough...
Also, I will go a whole lot but no where near a months worth if you know what I mean... This is so embarassing that I hate talking to my doctor about it but I know I have too... Last time he put me in the hospital and did the "big" enema to get me going...
My doctor also pretty much tells me it's part of the MS... One thing about it though if I tell him I want a specialist he doesn't hesitate to send me... I'm just too afraid of the test those GI docs put you through... I think I would rather just go 1or 2 x per month... lol
I'll be praying,
Carol
Sometimes I make it and sometimes I don't... Like right now I wouldn't dare go any where because I haven't had a bowel movement since the 23rd of June... It will be any day now so I'm stuck until my body decides it's full enough...
Also, I will go a whole lot but no where near a months worth if you know what I mean... This is so embarassing that I hate talking to my doctor about it but I know I have too... Last time he put me in the hospital and did the "big" enema to get me going...
My doctor also pretty much tells me it's part of the MS... One thing about it though if I tell him I want a specialist he doesn't hesitate to send me... I'm just too afraid of the test those GI docs put you through... I think I would rather just go 1or 2 x per month... lol
I'll be praying,
Carol
Hi, Jan.
Oh my goodness, you have been through as much as me, if not more.
Fun, huh? NOT!
Never dreamed in life the one thing that would make me happy is to just go to the bathroom, like a normal person.
I'm really sorry that you are experiencing all of this crappy stuff, too.
Yes, I've seen so many specialists and they run a zillion tests and still shake their heads and say "I don't know".
The only doctor that knows what is wrong is my G.I. Doc and he explained it to my Neuro who still would not re-instate his original dx of MS.
I am making an appt. with my G.I. Doc to refer me to a G.I. surgeon.
Yes, you made absolute sense to me, probably because I'm going through the same thing as you.
Thank you for replying.
Blessings to you, as well.
(((HUGS)))
Sheila
Oh my goodness, you have been through as much as me, if not more.
Fun, huh? NOT!
Never dreamed in life the one thing that would make me happy is to just go to the bathroom, like a normal person.
I'm really sorry that you are experiencing all of this crappy stuff, too.
Yes, I've seen so many specialists and they run a zillion tests and still shake their heads and say "I don't know".
The only doctor that knows what is wrong is my G.I. Doc and he explained it to my Neuro who still would not re-instate his original dx of MS.
I am making an appt. with my G.I. Doc to refer me to a G.I. surgeon.
Yes, you made absolute sense to me, probably because I'm going through the same thing as you.
Thank you for replying.
Blessings to you, as well.
(((HUGS)))
Sheila
Yes, you summed things up, exactly. Always feel like I am sitting on a pile of poop. Homecare nurse taught me to dis-impact, because she said that if I leave it there, it will deaden the nerves even further.
I stopped expecting my body to do much of anything a long time ago.
I actually had a dx of MS and then the Neuro re-tracted it.
I stopped expecting my body to do much of anything a long time ago.
I actually had a dx of MS and then the Neuro re-tracted it.
Hi - I can so relate to your problems, as I too have severe GI problems. I have Systemic Sclerosis, as well as MS, and also Gastroparesis. My bowels are a huge issue for me, and the TESTS - man alive - no fun. I thought I wasn't going to make it through either.
About a year or so ago, I was considering a total removal of my colon, and the surgeon was going to do a "stool passing" test to see if I could keep my rectum and also see if I could keep my small intestine. I finally just slipped away and did nothing.
I've already had a foot of colon removed and a rectal prolapse repair and it took forever to recover from those. My rectum has prolapsed again and I don't think it can be fixed again. My bile duct, pancreatic duct, and liver ducts are all enlarged and my GI put in a stent in the pancreatic duct to help relieve pain, but it actually helped my bowel function. I told him that and he just looked at me funny. (I get a lot of that)
Anyway, the stent was temporary and fell out several months later and I stopped "functioning" well after that. I can't seem to get everything that's wrong with me fixed because there's just too much wrong. With Medicaid, I just keep getting turned down. Each specialist says - "don't know what to think" - and then just fades away. My primary kind of shakes his head and doesn't end up doing much either. I'm very frustrated and I wanted you to know there was someone out here who could understand how "crappy" it is and how it effects every aspect of your life.
There - I don't know if anything I've said makes any sense - my brain is melting away in the heat! I do hope you find an answer to your problems, and would suggest maybe seeing a GI surgeon instead of a Neuro or Gastroenterologist. The surgeon is more aware of both systems and how they interrelate. Don't know if you already have or not.
Blessings to you
Jan
About a year or so ago, I was considering a total removal of my colon, and the surgeon was going to do a "stool passing" test to see if I could keep my rectum and also see if I could keep my small intestine. I finally just slipped away and did nothing.
I've already had a foot of colon removed and a rectal prolapse repair and it took forever to recover from those. My rectum has prolapsed again and I don't think it can be fixed again. My bile duct, pancreatic duct, and liver ducts are all enlarged and my GI put in a stent in the pancreatic duct to help relieve pain, but it actually helped my bowel function. I told him that and he just looked at me funny. (I get a lot of that)
Anyway, the stent was temporary and fell out several months later and I stopped "functioning" well after that. I can't seem to get everything that's wrong with me fixed because there's just too much wrong. With Medicaid, I just keep getting turned down. Each specialist says - "don't know what to think" - and then just fades away. My primary kind of shakes his head and doesn't end up doing much either. I'm very frustrated and I wanted you to know there was someone out here who could understand how "crappy" it is and how it effects every aspect of your life.
There - I don't know if anything I've said makes any sense - my brain is melting away in the heat! I do hope you find an answer to your problems, and would suggest maybe seeing a GI surgeon instead of a Neuro or Gastroenterologist. The surgeon is more aware of both systems and how they interrelate. Don't know if you already have or not.
Blessings to you
Jan
It seems to me that if you have lost sensory nerves in your internal anal sphincter muscle, you would find yourself (for lack of better words) sitting in a pile of poop. Is that happening? If not, I would think the problem is you are expecting your body to work preMS and have movements daily or even weekly. For many MSers it doesn't work that way. Things slow down...in all parts of your body. For lack of a better word..we are sluggish everywhere.
That would be my thinking on the issue.
That would be my thinking on the issue.
Shell,
I'm so happy that you are doing okay. I understand the daily attempt at managing things.
My days consist of some activity, followed by a massage, a little more activity, more massage-those darn nerves in my spine just won't cut me a break.
I am going to call my G.I. Doc tomorrow morning, and made an appt.
I was wiped out yesterday & today, just going to the dental hygienist yesterday.
My health issues went on hold since the beginning of Oct. when my older Yorkie, Sydney was diagnosed with renal failure.
Sadly, I lost her on 2/28 at 10:39 A.M. She died, peacefully, in my arms at our Vets office.
Then, I went into a deep depression, stopped really caring about what was happening to me.
She was my heart & soul. I haven't found a way to be happy without her. She always knew when I was in pain, and would cuddle up with me, comforting me. Even in her final hours, as I held her in my arms, laying on the couch, she kissed me so fervently as I told her I couldn't bear to let her go. I soaked her beautiful hair with my tears and promised her we'd do everything we could to help her, but if Dr. Steve couldn't do anything more, there was a wonderful place for her, and I would join her there.
Thanks, shell, I hope my G.I. doc will have someplace else to send me.
((((HUGS))))
Sheila
I'm so happy that you are doing okay. I understand the daily attempt at managing things.
My days consist of some activity, followed by a massage, a little more activity, more massage-those darn nerves in my spine just won't cut me a break.
I am going to call my G.I. Doc tomorrow morning, and made an appt.
I was wiped out yesterday & today, just going to the dental hygienist yesterday.
My health issues went on hold since the beginning of Oct. when my older Yorkie, Sydney was diagnosed with renal failure.
Sadly, I lost her on 2/28 at 10:39 A.M. She died, peacefully, in my arms at our Vets office.
Then, I went into a deep depression, stopped really caring about what was happening to me.
She was my heart & soul. I haven't found a way to be happy without her. She always knew when I was in pain, and would cuddle up with me, comforting me. Even in her final hours, as I held her in my arms, laying on the couch, she kissed me so fervently as I told her I couldn't bear to let her go. I soaked her beautiful hair with my tears and promised her we'd do everything we could to help her, but if Dr. Steve couldn't do anything more, there was a wonderful place for her, and I would join her there.
Thanks, shell, I hope my G.I. doc will have someplace else to send me.
((((HUGS))))
Sheila
Sheila!
I'm doing ok! No major attacks - woo hoo, and other than that, just managing the chronics of the beast daily. Family is doing well - I'm grateful for these things.
Tell me, Miss! Your GI doc is great and knows you well - how long has it been since you've seen him? Oh, please go, darlin. Worse for you is very bad because it was already bad :(
Want desperately for you to get proper care for this -
(((Hugs)))
shell
I'm doing ok! No major attacks - woo hoo, and other than that, just managing the chronics of the beast daily. Family is doing well - I'm grateful for these things.
Tell me, Miss! Your GI doc is great and knows you well - how long has it been since you've seen him? Oh, please go, darlin. Worse for you is very bad because it was already bad :(
Want desperately for you to get proper care for this -
(((Hugs)))
shell
I wouldn't go to CC again, if they paid me!
I'm going to see my G.I. doc again and ask him for a referral.
He's always been straight up with me.
Sheila
I'm going to see my G.I. doc again and ask him for a referral.
He's always been straight up with me.
Sheila
Definitely avoid the CC again... I am vaguely remembering the horror tales you shared from seeing them.
Work with the doctors you know and trust - keep pushing for a different referral. There has to be some good ones over your way in IN.
If it's not inertia problems then the doc needs to rethink this .... you must be miserable.
Work with the doctors you know and trust - keep pushing for a different referral. There has to be some good ones over your way in IN.
If it's not inertia problems then the doc needs to rethink this .... you must be miserable.
Hi, LuLu,
I forgot to tell you that I had a bowel transit study done, and it isn't colonic inertia
Also wanted to say, I'm glad you didn't forget me.
I am having a hard time sitting up for very long.
Hugs,
Sheila
I forgot to tell you that I had a bowel transit study done, and it isn't colonic inertia
Also wanted to say, I'm glad you didn't forget me.
I am having a hard time sitting up for very long.
Hugs,
Sheila
Hi, Shell!
Oh, I am so glad you haven't forgotten me. I am amazed at all of the new faces around here, and also so sad, to see so many people, suffering.
My former Neuro just was not interested in helping me. He really ruined my chances of getting help, when he retracted his DX of MS.
The bowel issue is getting worse, so I have been really searching for an answer. I am going to schedule an appt. with my G.I. Doc so that I can tell him what is happening and ask him if he can refer me to a good Neuro. He insists it's neurological, and he is an excellent doctor, and he knows me very well.
It is so nice to see you, too.
How are you feeling these days?
((((HUGS))))
Sheila
Yes, that G.I. Doc at CC just about killed me.
Oh, I am so glad you haven't forgotten me. I am amazed at all of the new faces around here, and also so sad, to see so many people, suffering.
My former Neuro just was not interested in helping me. He really ruined my chances of getting help, when he retracted his DX of MS.
The bowel issue is getting worse, so I have been really searching for an answer. I am going to schedule an appt. with my G.I. Doc so that I can tell him what is happening and ask him if he can refer me to a good Neuro. He insists it's neurological, and he is an excellent doctor, and he knows me very well.
It is so nice to see you, too.
How are you feeling these days?
((((HUGS))))
Sheila
Yes, that G.I. Doc at CC just about killed me.
Wow!!!!!! I was thinking of you last week!
Can you believe all the new faces around here? I'm so glad you didn't forget where to hit up lots of MSers,and limbolanders for input.
This is out of my league girl, I just don't know enough to comment w/out researching.. But, what stands out to me is that the GI sent you to the neuro so he could help, and all he said was "don't know why." Can you call him back and say, since he can't help, to please line up someone who can?
Going to keep this on the 1st page for you so some of our professionals see it - we have more than one in the medical field who may have input for this problem.
I'm so sorry your in the same sitch as in the past. I do remember when thet almost took you out with those tests.
Nice to see you and hope some have more thoughts.
((((Hugs)))
-shell
Can you believe all the new faces around here? I'm so glad you didn't forget where to hit up lots of MSers,and limbolanders for input.
This is out of my league girl, I just don't know enough to comment w/out researching.. But, what stands out to me is that the GI sent you to the neuro so he could help, and all he said was "don't know why." Can you call him back and say, since he can't help, to please line up someone who can?
Going to keep this on the 1st page for you so some of our professionals see it - we have more than one in the medical field who may have input for this problem.
I'm so sorry your in the same sitch as in the past. I do remember when thet almost took you out with those tests.
Nice to see you and hope some have more thoughts.
((((Hugs)))
-shell
Hi, LuLu.
Thank you. It's nice to "see" you again, too.
I am miserable. My former Neuro first said MS, but after I saw the Neuromuscular Neuro at CC, he got nervous and retracted his DX. In his words, he didn't want to "label" me with MS.
Hugs back at you!
Sheila
Thank you. It's nice to "see" you again, too.
I am miserable. My former Neuro first said MS, but after I saw the Neuromuscular Neuro at CC, he got nervous and retracted his DX. In his words, he didn't want to "label" me with MS.
Hugs back at you!
Sheila
Hi Sheila,
it's always good to see you pop through but I sure wish it was with better news. I think what you are describing may be colonic inertia - eventually the bowels do move but without the urges normally plumbed people will sense. But then again it may be called something else.
No matter the label, you have to be miserable. I just wish there was something to make you feel better.
hugs,
L
it's always good to see you pop through but I sure wish it was with better news. I think what you are describing may be colonic inertia - eventually the bowels do move but without the urges normally plumbed people will sense. But then again it may be called something else.
No matter the label, you have to be miserable. I just wish there was something to make you feel better.
hugs,
L
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