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Anismus - Anyone Else? Treatment Options?
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Anismus - Anyone Else? Treatment Options?

I'm a 24 year old female suffering from anismus or "anal sphincter dyssynergia".  I'm looking for other people who share this digestive disorder.

What have you been thru and what are my options?

The only alternative to surgery I can find is biofeedback which isn't working very well for me.  I'm learning about botox injections and possibly acupuncture.

I started a Yahoo Group for people with anismus.  It is located at http://health.groups.yahoo.com/group/anismus/

If you have anismus, please join and help me.  Share your story and knowledge.
Related Discussions
40 Comments Post a Comment
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Avatar_n_tn
Hi there,
I also have this problem and have tried biofeedback, and it's also not helping me. What I'm considering is the "Stanford Protocol" as recommended in a book called "A Headache In The Pelvis."  While it's directed mostly toward men with pelvic pain, it also applies to people (women) like us.  They have a 6-day seminar at Stanford University where people can go and learn how to do trigger point massage on themselves and also there's a relaxation technique you learn. Then you go home and spend 2 hours a day doing this and in time it's supposed to help tremendously.  I hate the thought of having to do this 2 hours every day, as I also am ill with major fatigue, but will try anything to get relief!!  But can't afford to go out to California for this seminar....  Anyway, I would love to talk more to you. I've been looking to talk to someone about this forever, but haven't found anyone until I was searching on the internet and found your post. Would love to chat!!
Take care,
KP
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Avatar_n_tn
Wondering if the site is still active with member suffering with anismus?
I have a 12 year old son who received that diagnosis 4 months ago and need daily enema.
I looking for as much information as possible in hope that he could go back go normal bowel function
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Avatar_n_tn
hi i have anismus and will be sharing my experiences and views with you shortly i am sending this message to confirm the link will speak with you soon regards a sufferer or should i say survivor
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Avatar_f_tn
Hi, i'm a bit late to come here, hope you still visit this forum... And sorry for my english.
I have anismus, too, for some 22 years (i'm 40). Several years ago i did biofeedback, and it helped a little, but then my condition worsened and returned to pre-biofeedback state. Then i found a "cure": smoking. I know it's killing me, but it returned back my quality of life. I DON'T recommend it to anybody and really, i'm desperate. I already have asthma because of my smoking, but i continue to smoke cause i want to function as normal human being and not to spend all my day in the bathroom.
Just wanted to share.
Good luck.
H
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Avatar_f_tn
Hello, I have a question for all of you who are commenting on this page....how did you find out your diagnosis? I am a 24 year old female who has been having constipation problems all my life. As I got older the symptoms worsened and i had a colonoscopy at age 17. The doctor told me is was IBS and has been prescribing me medication. Most do not work, except for the meds that cause horrible diarehhia.  I have not been taking the meds and just deal with the constant stomach issues. I never believed it was IBS because the symptoms have been constant all my life regardless of is i am under stress or not. What can i do to be tested for this? I am curious as to if it would have shown in the colonoscopy or if another test should be done?

Thank you for your help!
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Avatar_f_tn
Hi...

Could you please tell me the symptoms of anismus??  I'm having some problems and wondered if this could be it??

Thanks,
Krs
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Avatar_f_tn
Hi KM25! :)

Anal - Rectal Manometry may be done to diagnose anismus.

http://bladder.wustl.edu/obgyn/urogyn.nsf/WV/0BD5B91FB7BDE0138625718000700400?OpenDocument

"how did you find out your diagnosis?" I kept telling my doctors that i felt my colon didn't emptied entirely. They didn't trust, but I insisted. So my last doctor (a good one as opposite to my former doctor, an awful one) after all the tests that found I don't have an organic pathology sent me to do Anal - Rectal Manometry and then to biofeedback..

Hope this helps.

Good luck!

H  
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Avatar_f_tn
Does anyone live in Oregon/Washington with this?  Just got diagnosed about 11/2 months ago.  The doctor who diagnosed this told me- I have one of the WORST cases of Anismus he's seen in the 19 years of specializing.  I don't know much about the out come with this...how long it usually lasts or if it even gets better.  Please give me some input from your experience.  Thanks you and Take care.
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Avatar_n_tn
I think I have Anismus. My back passage tightens on its own without me thinking about I, when I realised I conciously relax it only to find a short while later that it has tightened again. this happens over and over. Is this Anismus? K
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Avatar_m_tn
Through research I have done , I most definitely have an involuntary contraction of the sigmoid sphincter , this has caused the worst problems for me in my life , bloating , constipation , pain, pressure ,looking pregnant  and so on , for 25 years  I have suffered with this and no doctor has advised me correctly ! . FYI , once upon a time fluoxetine gave me a reprieve for 2 months and a trip to Amsterdam where I ate a magic mushroom relieved my symptoms for one evening , does anyone know how to treat this ? long term
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Avatar_f_tn
I have the exact same problem.   What you call the sigmoid sphicter, I call the puborectalis.  The constipation, bloating, appearing pregnant, pain and pressure and above all the contant anxiety of whether I can relieve myself or not, are all things that I continue to have.  I have seen reports about a research team in Rome that has used botox to great success.  I have also read about partial resection of the puborectalis muscle to get significant improvement (Howerver in the US, doctors are reluctant to perform this operation since leakage can result.).  I take a low dose of Zoloft which provides more seratonin and as a side effect it increases the peristalsis of the colon to help.  Baskically I get thourh from year to year (7 years so far) using a combination of Milk of Magnesia, Zoloft, more fiber in diet, liquids, coffee as a daily "prolpellant" laxative, Flents glycerin suppositories with vaginal gel for lube and occessionally Dulcolax.   After eating is a good time to try to go, since food entry into the stomach and deuodenum stimulates peristalsis and evacuation.   Nothing is perfect and the frustration is endless but I somehow manage to get buy.  This is such a rare condition that not evern doctors know about it.  Its completely screwed up and trips up one' life.
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Avatar_f_tn
anismus or non-relaxing puborectalis can be a very devastating condition.  It causes frustration and pain!  However, there is treatment for this condition that can be effective.  First, you have to be properly diagnosed either with ano-rectal manometry or defography.  If it is indeed your problem, go to a physical therapist in your area that works on pelvic floor dysfunction.  We are out there but most doctors don't know about it.  Treatment can include internal massage/stretching of the muscles, biofeedback, and relaxation.  Sometimes, medication that is normally for anxiety can help as well as it secondarily causes muscle relaxation.  Botox is absolutely effective but there are not many doctors who do it except in larger cities like NY, CA, FL but you won't know unless you ask.  
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Avatar_m_tn
when i try to use the bathroom after ive had a bowel movement, my anus just closes making it almost impossible to clean myself up.  is this anismus?

thank you.
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Avatar_f_tn
Hey there, wow I finally found a site where people have the same problem as me. Like everyone I have had troubles all my life with constipation etc. I am a reg. visitor to hospital and only last year had something radical done. Most of my large bowel has been removed (only 28 cm remaining) with an ileo-sigmoid anastomosis. That was about 18 mths ago. That has given me no relief and still visiting hospital for cleanouts and pain relief. I was diagnosed with an anismus before this bowel surgery and tried biofeedback and other various things. I saw a bowel specialist 2 mths ago and he has come to the conclusion that I need to have further surgery (completion colorectomy with a defunctioning ileostomy). At the moment I would try anything to make this problem better. As u guys know it impacts ur life immensly. The pain is terrible at times, I try to work when I can but have lost out financially, have a thing about the foods that I eat cos I know it will either cause pain and block me up and never go on holiday (in particular camping and Im sure I dont have to explain why). I am really scared about this surgery due to the last one. I hemorraged and ended up in ICU having another open up to remove 4 litres of blood and then 2 mths later got opened up again for adhesions. I am only 34. I want to have a life though!!! I have talked to loads of peeps with bags and they have all said life is much better for them. Have u guys anything radical done????? Apparently I would have to do biofeedback again after the surgery to regain optimum bladder control. The bag may be reversed if I really dont like it. I have also had a capsule endoscopy done (pillcam) and that revealed that I have 23 polyps in my small bowel, I wonder if that has been causing the blocks along with the anismus. Hmmmm. I am on regular codeine for pain which is a farce in itself cos it blocks u up.......omg can they not nvent really good pain relief for bowel people lol. Anyways interesting site. Oh btw, I am from New Zealand. I would say have a great day but instead I'll say I really hope u go to the toilet today.
Thanks
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Avatar_f_tn
Anismus:  I was just diagnosed at Mayo Clinic with this troubling condition.  Those sphincter muscles in my case were damaged over a long period by lumbar disk herniations.  It was a final straw when the disks finally collapsed.  It took some miracles to get doctors to recognize my need for surgery.  They expressed regret that the damage for my case will likely be permanent because "I" had waited too long to seek help.  The main damage was to my sciatic nerve into my legs.  The secondary fallout was that these sacral nerves in the form of very tiny threads that form the "cauda equina" or horsetail exiting the sacrum (being more fragile) were severely damaged.

From what I've been told:  These little nerves are part of the relax controller for the pelvic floor, the peritoneal area, the lower bowl, the sphincter and bladder sensation.  They fine tune the innervation of these areas also ruled by other nerves descending from further up the spinal cord.  When they've been injured or destoyed the coordination of the whole network gets confounded and a lot more complicated.  The harder you push, the tighter it gets instead of relaxing.

Mayo recommended a retraining program with a therapist &/or biofeedback for the little bit of control I still have.  It's more time and money than I am able to expend.  Looking to herbal support for the body to relearn and help itself I've found reference to Chanca Piedra an herbal antispasmodic that helps the relaxation of muscles like the pelvic floor.  It is recommended for gall bladder therapies of stone removal to minimize cramping and spasm associated with the process.

Another part of the equasion I find it intriguing that the latest Mayo research in constipation therapies is the use of the drugs such as Ursidol (ursodeoxycholic acid) for the treatment of constipation. This drug is normally used specifically to dissolve gall stones, but creates loose stool as a side effect.  I just learned of this from my doctor today via phone consult.

It's a fine balance to help the body reach "normal" function vs. forcing the issue.  I try not to use a sledge hammer when a tack hammer will suffice.  I'm planning to try these avenues and share my experience for any who may benefit.  Like other folks I'm also a bit focused to find remedy.  Not knowing when I will be able to "go" and preventing compaction vs. blowouts and leaking makes for a very stressfull life.  It's all very new to me as is webbing.  
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Avatar_m_tn
Try this
http://www.enemagra.com/faq.php
Plenty of lube, please
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Avatar_m_tn
eeeeeeeven better:
http://www.nexusvibro.com/
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Avatar_f_tn
i live in oregon. have been seeking treatment for 2+years now. tryed botox once after biofeedback and manual stretching therapy. have had all the tests done which also show colonic inertia, rectocele which dr.'s are telling me is from anismus. gotta some relief from botox about 30% better yet still suffer from other issue's. very frustrated as i'm sure you all are, feel totally robbed of my self confidence and enjoying life.
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Avatar_m_tn
Man, this s&%$&t is making my life miserable. is there anybody that knows how handle this situation, please.
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Avatar_m_tn
hi,
ive suffered from what the docs think is anismus for 2 years now. i began with severe pelvic pain, so after numerous doc appointments privately in london, i had an operation called pph surgery (usually for hemmorroids but in my case for pelvic floor descent apparently. ) i was fine before surgery , just had pain after going to loo. Post surgery i began having real problems evacuating. Everything just felt blocked. had to use fingers/enemas etc. Awful. The only way i can have a normal life is on Movicol (miralax in the U.S) . I have to take 2 every evening . If i do this the stool is very soft  i can manage this ok. However i want to get off of these laxatives and be normal again. Had biofeedback twice and it helped very slightly if only to reduce anxiety. Doc has now recommended eat more fibre even though the biofeedback nurse said fibre can be the worst thing for people with this syndrome. Doc thinks the safest long term solution is use of a bulb enema everyday to evacuate. This si supposedly harmless long term.
thinking of trying botox next. Does anyone else feel as though the blockage feeling is higher up in the rectum.? I have trouble getting the stool down to the entrance! Once its at the entrance I am more successful on the loo!
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Avatar_f_tn
"Does anyone else feel as though the blockage feeling is higher up in the rectum.? I have trouble getting the stool down to the entrance! Once its at the entrance I am more successful on the loo! "

yes, exactly.
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Avatar_f_tn
I have had anismus for over two years.  The pain was excruciating.  My GI doctor only prescribed Anucort suppositories.  At first it helped a little.  Then the pain became much worse.  I knew I needed much more than just a suppository.  On the advice of a nurse I know, I went to a Colorectol doctor.  At first he thought was internal hemorroids (hemorrhoids) and gave me injections for that.  After a few visits he suspected anismus.  I had a defecography test at a hospital.  I haven't had the results yet.  I have two more tests to do - manometry and anorectal ultrasound.  This is quite a rare condition, so they don't do these tests all that often.  In the mean time I have found that taking milk of magnesia and benefiber at night, which helps keep the bowel movements soft.  I always use a sitz bath with warm water when I go to the bathroom, which has helped me relax the muscles.  I spend a lot of time in the bathroom, two or three times in the night.  The pain is worse always after lying down, which may be a sign that the nerve damage caused by a compression fracture in my L-2 and spinal stenosis are contributing factors to the anismus.  It's important to find a good colorectal specialist, as my regular GI doctor left me to suffer for a long time without doing anything.  Good luck everyone, I empathize because I know what the suffering is like.  I will let you know the results of my tests next month.
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Avatar_m_tn
I was diagnosed with a paradoxically contracting internal and external sphincters after a mamometry recently.  Is this the same thing as anismus?
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Avatar_n_tn
Hi everyone I posted a comment early on up the forum and did not return as felt it was not being used any more.Only to find to my surprise that it is.I have read all the comments with extreme interest.I have had anismus for 20 years in the conditions early stages my GP thought I was mad,She just prescribed masses of laxatives that did not help at all,it is hard enough having to tell the doctor in the first place.Years went by and I managed this condition but it does interfere with aspects of your life,and I once again went to my GP.Fortunately for me our local hospital had a new Ano rectal consultant who sent me for various test including the relevant tests for a diagnosis of anismus.These tests confirmed his suspicions.I was sent for bio-feedback with no effect and that was about it.I continued to suffer this awful condition and eventually was refered back.I have been told there is a device that might benefit me.Apparently it is like a small pacemaker that is inserted into the lower back this is operated by voluntary muscle contraction that allows the sphincter to relax and allow you to deafacate,As far as I am aware it is in the early stages of being used but results are promising.The device is also used for helping people with diarrohea as shown on the TV programme embarrassing illnesses.I am hoping that I myself will be tested for one of these devices but I need to go through Biofeedback again because of the costs to the NHS.Lets all hope that our rare and difficult condition will be eventually recognised and that a cure will be found.I have to wind up now as once again it is time to go to the loo.best regards to you all Downside
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I just self-diagnosed me. I am 20.
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Avatar_f_tn
Hello.  I have just been diagnosed with anismus.  I think I have been suffering from it since childhood - am now in my mid 30s.  I couldn't work out why I was getting pain and terrible 'wind' noises, but I knew they were coming from my bowel.  Sometimes they're so loud they wake me up at night.  I'm terrified of any 'silent' situation.  I also experience pain and cramping, and know that I need the loo but often just can't go.  I have lived with this bloating, humiliation and stress for years.  It has a way of affecting everything you do, and my life is ruled by my bowels.  Please tell me, does anyone else get these awful noises?!!  They are SO embarassing.  The only way I have dealt with them is to make sure my poos are soft and to get as much stool out as possible.  I've found probiotic yoghurt helpful, then a bowl of cereal such as Bran Flakes with a tea or coffee in the morning helps me to go.  I've also found pro-biotic vitamins help soften things - Multibiontia available from Boots.   Although I know I never get rid of everything fully, the softer stool helps.  My doctor has recommended suppositories for a month till we can start to retrain the bowel so my muscles relax as they are meant to.  I hope it works, sick of looking pregnant and feeling full and windy.  Going out for dinner is a total waste as I hardly eat anything coz I'm bloated.  Please share any tips you have, and let me know if you also get noises...?  I think it's my bowels trying to work but they're blocked.
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Avatar_m_tn
Hi again people - just to let you know that I had further investigations by a top colorectal surgeon in the UK and he found that I have an occult rectal prolapse.  Initially the surgeon thought that anismus was possible and I underwent a botilium A (botox) injection into the pelvic floor to relax the internal sphincter.  When this did not prove effective I had to have further investigation under anaesthetic which revealed a prolapse.

This essentially means that the tissue of my rectum has collapsed in on itself.  The rectum is about 8 inches long so the tissue had collapsed and fallen in on itself but not so far as to make it protrude through the anus - hence the 'occult' label.  It usually occurs in post-partum women and older people - very unusual in a young and fit male.

In my case the prolapse is extremely large - a grade 5 (it goes up to grade 5) so the constipation that this caused was crippling.

This kind of prolapse is never detected by colonsocopy due to the air re-inflating the tissue during the procedure.  In my case - the anismus was a misdiagnosis - apparently my anal canal has a high resting pressure which caused the error.

I'm going to have to undergo surgery to correct the defect.

It was good to get a diagnosis and to get the validation that I'm of perfectly sound mind.  I can't empathise enough with other people suffering these kinds of symptoms - it's a daily nightmare and it is staggering how little even specialists know about it - they just attribute the sever constipation to stress/psychosis when in fact it is a purely mechanical symptom.  In my case it wasn't until I was investigated using a new kind of probe that the condition could be diagnosed.
  
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Avatar_m_tn
MAGIC MUSHROOMS helped me too , no joke!
as well as getting rid of other neurotic behavior patterns (temporarily ) , but this cant be a long term solution , right ? cause people cant accept this as a medicine , anyways wont go into morality
SQUATTING while defecating is another helpful piece of info I am sure some of you have come across , basically the "Natural way" to defecate as has been practiced before the modern contraption of the toilet

I am only 25 and suffer from this condition , I look forward to a day where I wont have to worry about this fundamental human function
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Avatar_f_tn
hi i also have this and have tried lots of things the best treatment i have tried and has changed my life so so much is i do daily irrigation i had training with a stoma nurse and it was the best thing i ever did so now it is up to ME when i go!!!!  charter health is where i order the stuff from its so easy you can ring direct or through your gp like a normal precption.
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Avatar_n_tn
FROM RICH36 Your comment was informational.  I am 75 and this is driving me nuts. did the surgery help? Don't think this is done in the U.S.  7/21/11
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Avatar_f_tn
Hi everybody, I am also suffering constipation since i was a child. But 2 years ago, i just found out the reason from a bowel check why i always got constipation as I am suffering anismus. The awful doctor said it is due to my bowel size which is much more smaller than normal and ask me to have a certain surgery that i don''t remember anymore which name it is to make my bowel return to a normal size, but it won''t last long, around 2 years after that it becomes the old size. Perhaps I get this since birth. Now, i think i did make the right choice to refuse that surgery and share with everyone this little thing that it helps me stay away from constipation.A CHEAPEST WAY.
Everybody knows that we should drink more water a day to prevent constipation, but we forgot the most important thing that is how much water and when is the ideal period to drink water.

- Once you wake up, ( it is even better if  you havent brushed your teeth) drink approximately 1,5 liter of drinking water that could help your solid waste food away out of your body easily. But it won't be that easy to drink that much water at first. So practise everyday, it takes me 3 months to get used to it. Remember to brush your teeth before going to sleep then tomorrow it will work. Tell you that this little thing i knew from a doctor who said that our saliva early in the morning is helpful for our body. Just like animals, they never brush their teeth. Notice dogs, their teeth are always white.

- At first, you should try to drink around 0,5 liter of water and then increase the amount of water as quick as possible until you get 1,5 liter water for morning, but it would be still working if you drink before breakfast. The aim is try to drink 1,5 liter amount of water during the morning before you have breakfast. For example, you wake up at 7 am and have breakfast at 9am, so you should drink water between 7 and 9am. You are sure to feel terrible when drinking that much water. Stop to do other things or your work and then keep on drinking. But in a long run, you will get used to it. You can brush your teeth after breakfast.
--->It;s worth a try, you don;t have to pay a fortune or anything, and it is still good for everyone because drinking water in the morning when your stomach is still empty is a good way to cleanse your whole inner body.
Hope this will help everyone.
Have a nice day and stay good health.
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Avatar_m_tn
Hi all...I'm a 30 year old female who like the rest of you was diagnosed with anismus not to mention colonic inertia as well.  I had been misdiagnosed since the age of 19 up until now with IBS.  My quality of life ***** as many of you can relate.  Fiber...laxatives..ememas...none work.  Surgery is not an option and would leave me with a terrible outcome.  Biofeedback has been suggested as the only possible help. Havent heard much sucess with that it sounds like.  SOOOO...I'm begining to realize this is probably going to be a lifelong struggle and there is no complete "fix" for it.
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Hello to everyone on this thread. Please check my story on this thread: (if anyone wants to ask further questions plz send me on my inbox. don't hesitate!)

http://www.medhelp.org/posts/Fibromyalgia/Fibromyalgia--Rectum-spasms--nerve-pulsations/show/1013658

Just wanted to check if you've found-out solutions for your "Obstructed Defecation Disorder" & your persistant rectal spasms. Again, my story is i was about to die because of this medical condition, as at one point i was unable to pass out for about 10 days! Then I had this BOTOX injection in my anal muscles, & my problem is almost totally solved. Especially, it was followed by psychological treatment, i took "Effexor" anti-depressant & really helped with the relaxation needed. Although, I around the same time of the healing-up process, i coincidently developed a new rare condition called "Visual Snow". I'm not sure if it is relevant in some way though.

Hope you all heal from that soon & feel better. God bless you all =)
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Avatar_m_tn
Hi. I also have anismus. I suffer from mild constipations and I have problems in releasing gas silently, Does any of you have problems with releasing gas too? my doctor has advised me to massage the sphincter with dilatator after having a hot bath.  
Goha
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Avatar_f_tn
My daughter has had this condition since she has been in diapers, although she stayed in pull ups until the 6th grade and still has problems today at 15.
I give her two tablespoons of Muralx daily, in am and pm, and a gummy fiber in morning with her other vitamins. I make sure she gets 6 glasses of water daily, plus other liquids. In addition she gets a certain amount of fruit and veggies daily. Still we get the leakage of watery stool and at least once a week where she still is constipated. Walking, although tiring for her, she has hypotonia but has gotten better with age and OT, is good to put into a daily routine. Patience, love, and a good schedule will help a lot, good luck.
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Avatar_f_tn
I have just found this forum and have read all the comments. Unbelievable! I have all of the symptoms of anismus, my doctor sent me for a colonoscopy and it was fine of course. I have been struggling with this debilitating problem for 2 years now. I am a 52 year old woman and have thought that this must be some cruel symptom of menopause! Just finding this forum has given me some relief. I will be contacting my doctor this week and discussing my treatment for anismus. Thank you all for sharing.
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Avatar_m_tn
Hi,

My gastroenterologist has prescibed me Sulpiryd for anismus. He wrote a PGD on anismus, so he must know a lot about this condition. I have been taking it for 3 weeks so far and I noticed  a small amendment. Sulpiryd is a medcine for schizophrenia, depression, neurosis and psychosomatic ailments.Maybe it will work better for you.
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Avatar_m_tn
Hi there
I also find smoking is helping me - sorry to say. Keeps trying to quit. But the anismus is a cloud over the effort. I have tried Anurex with some positive result. It is a cooling stick that, in my opinion, works as well as biofeedback. It is easy to handle and not expensive.
Leif
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Avatar_m_tn
Wellbutrin (or Zyban) may be a healthier alternative to smoking for you
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793180_tn?1379799860
Hi. I am also diagnosed with this. Report says "obstructed defecation due to spasm
of the puborectalis sling". But I believe I have internal prolapse. I had defecography test done. But the doc didn't do it the way it is supposed to be done. I mean I didn't even try to strain on the commode. Anyway, what is the operation that you are undergoing?. Please reply. Thanks.
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