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Old 07-07-2011, 02:21 PM #41
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Originally Posted by Dejibo View Post
I did not get an urge either, but knew that my belly was bloated, and I was uncomfy. I always looked bloated too. Xray showed I was full of poop! MD was impressed. He ordered laxatives and such, but I never get the "push" urge or the best way to describe mine is that even if my brain tells my bum to push, it never gets the message or its a confused message and while I can be some what effective most just sits there. I gave up long ago and started rescuing stuff. its gross, but it kept my hemmorhoids from going crazy. Material sitting on those veins of the exit gate can cause some humdinger hemmorhoids. I had a few thrombose or clot off because normally the passage of material massages the veins and helps the blood flow but when stuff sits, so does the blood.

NAsty business. I would never get the "dumping" syndrome unless I was over heated and then BOOM! without the sun or heat I just couldnt get my bowel to figure out what its job is. Like I was speaking french and my colon was speaking German. They didnt understand each other.
Hi, Dejibo.

Just got home. Trip wasn't great. I was very tired.

I never look or feel, bloated.

Just feel the stool, pressing on the internal sphincter muscle. Never experienced a "dumping" syndrome. Stool is not hard. Soft stool will not pass, at all.

And that makes the nerves in my spine, burn, makes my back hurt. So, I have to dis-impact, with a gloved hand. And, it is not easy.

My G.I. Doc said my brain is not getting the message from the nerves in the internal **** sphincter muscle.

I have not been diagnosed with MS.

Not sure I'll ever get a DX of anything.

Praying my appt. with the Neurosurgeon tomorrow won't be a waste of time & money.

I need to P.M. you, privately later.

Chelle
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Old 07-07-2011, 02:34 PM #42
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Internal a_n_a_l sphincter spams is perhaps my most disabling issue. However, unlike most of you, I have no colon or rectum, as they were removed in 2002 due to severe ulcerative colitis. They then reconstructed my ileum into a "j-pouch" (a reservoir to replace the colon) and reattached it to my a_n_u_s right at the sphincter (called an anastomosis).

Without a colon the stools one passes are not completely neutralized, nor are they nicely compacted and "smooth" like they are when they pass through the large intestine. This means that digestive acids and enzymes are still active, bits of undigestible fiber are present (and can be quite irritating on the way out) and because the small intestine is constantly in motion, bathroom urges are ever present. We j-pouchers have named this "inconvenience" butt-burn, because we tend to suffer severe skin breakdown from leakage.


In addition to all this, I have scar tissue and strictures built up around the anastomosis, and these lead to severe spasming of the internal a-sphincter, which in turn has caused a_n_a_l fissures to develop. If you are feeling a severe knife-like pain or burning, it is likely a fissure causing your pain. Now, add to a fresh cut, which is what a fissure is (in the most tender skin on your body), caustic stool in an imperfect colon-rectum replacement (the j-pouch) . . . you can lose entire days to the bathroom. You have a picture of my life. Fun? No!

I have been on a regimen of regular manual dilation of this internal a-sphincter for some years now, either using a dilator or a gloved digit. I use a compounded ointment containing lidocaine for pain and diltiazem for relaxing the muscle. Some people use nitroglycerine but it can cause terrible head-aches, so I opted for the diltiazem. For several years I had pretty good maintenance of my issue, but lately it has become more difficult to relax that stubborn muscle. (By the way, we do what we have to, right? Self-dilation has become so second nature, I carry a small vial of ointment and gloves in my purse at all times. I have dilated at 29,000' in a tiny airplane bathroom, in a porta-potty, and and many times in public restrooms. You do what you gotta do, right?)

The idea that there may be a herbal approach in vinpocetine is exciting to me. My surgeon's next step was to try botox, but that could render me incontinent, which means not able to leave the house (or the bathroom for that matter) until it wears off. Like I said, incontinence with loose, caustic stools can be terribly disabling, not to mention excruciatingly painful. I would be ecstatic to find some improvement . . . any improvement. I would think I had died and gone to heaven if it controlled the spasms, and the fissures could heal. I might actually be able to go hiking again . . . or even make it through a meal . . . .
Hi, lefthanded.

You've been through so much.

I agree, our lives are not fun.

Manual dilation with a gloved digit does not help me, as I have no feeling. So, I cannot get that muscle to relax.

I cannot "feel" glycerin suppositories. I can barely even get one up inside.

I'm right there with you, I would feel as though I had died and gone to Heaven, if I could find some improvement.

Even a diagnosis would make me happy.

Chelle
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Old 07-07-2011, 02:35 PM #43
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Originally Posted by missj View Post
wow.
I send cyber hugs and thank you for your candidness. I can relate to much (but not all) and admit that I even wrote a haiku about this dreadful condition. I will send it via message if you are interested, just hesitant to post on the www for the w to see forever!!
missj, if you would send me what you have written, via message, I would be so grateful.

Chelle
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Old 07-07-2011, 02:41 PM #44
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World J Urol. 2000 Dec;18(6):439-43.

Mult Scler. 1999 Apr;5(2):126-33.
Hi, jackD.

Is there any way you can explain what you have posted, in layman's terms for me?

Particularly, why the internal **** sphincter nerves do not send messages to the brain, to relax the muscle?

Please excuse my ignorance, but in all honesty, since I don't have a diagnosis, I suspect, you might be able to help me explain something to my new Neurosurgeon at my appt. tomorrow.

I have not been diagnosed with anything yet. Other than my G.I. Doc telling me that this is what is happening, & it is an MS symptom, and also telling my former Neuro, and the the Neuro not getting it.

Chelle
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Old 07-07-2011, 03:55 PM #45
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Hi, jackD.

Is there any way you can explain what you have posted, in layman's terms for me?

Particularly, why the internal **** sphincter nerves do not send messages to the brain, to relax the muscle?

Please excuse my ignorance, but in all honesty, since I don't have a diagnosis, I suspect, you might be able to help me explain something to my new Neurosurgeon at my appt. tomorrow.

I have not been diagnosed with anything yet. Other than my G.I. Doc telling me that this is what is happening, & it is an MS symptom, and also telling my former Neuro, and the the Neuro not getting it.

Chelle

It is my understanding that after the water content of the stools is removed in the lower colon that the hard stools irritates the lining of the colon and stimulates a reaction that causes the sphincter nerves to relax and initiate an evacuation reflex movement.

In MS folks this does not happen because the nerves are not working properly.

Vinpocetine aids nerve conduction to smooth muscles.

jackD
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Old 07-07-2011, 04:16 PM #46
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Default Another *Defecography* abstract form jackD

Radiology. 1994 May;191(2):553-6.

Defecography in multiple sclerosis patients with severe constipation.

Gill KP, Chia YW, Henry MM, Shorvon PJ.
SourceRadiology Department, Central Middlesex Hospital, London, England.

Abstract
PURPOSE: To evaluate defecography in assessment of anorectal function in patients with multiple sclerosis (MS) who have intractable constipation.

MATERIALS AND METHODS: Eleven patients with MS and constipation (10 women, one man) underwent defecography. A total of 130 mL of barium, liquid (20 mL) and paste, was introduced into the rectum. A dab of barium marked the external **** orifice, and, in the women, a tampon soaked with contrast medium marked the vagina. Video radiographic images and supplemental 100-mm static camera images were obtained.

RESULTS: During defecation, six patients had no puborectalis muscle effacement, four patients had partial effacement, and one patient had complete effacement. No rectal emptying occurred in five patients, and emptying was incomplete in the rest. Three patients developed an intussusception, and two developed a posterolateral pouch.

CONCLUSION: Defecography readily demonstrates rectal outlet obstruction and the failure of the puborectalis and **** sphincter muscles to relax. These are frequent findings in MS patients with intractable constipation.

PMID: 8153339 [PubMed - indexed for MEDLINE]
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Old 07-07-2011, 04:17 PM #47
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It is my understanding that after the water content of the stools is removed in the lower colon that the hard stools irritates the lining of the colon and stimulates a reaction that causes the sphincter nerves to relax and initiate an evacuation reflex movement.

In MS folks this does not happen because the nerves are not working properly.

Vinpocetine aids nerve conduction to smooth muscles.

jackD
Thank you, Jack. You're so kind to explain it to me.

Chelle
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Old 07-07-2011, 04:20 PM #48
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Default Another *Defecography* abstract from jackD

Defecography in multiple sclerosis patients with severe constipation.

Gill KP, Chia YW, Henry MM, Shorvon PJ.
SourceRadiology Department, Central Middlesex Hospital, London, England.

Abstract
PURPOSE: To evaluate defecography in assessment of anorectal function in patients with multiple sclerosis (MS) who have intractable constipation.

MATERIALS AND METHODS: Eleven patients with MS and constipation (10 women, one man) underwent defecography. A total of 130 mL of barium, liquid (20 mL) and paste, was introduced into the rectum. A dab of barium marked the external a-n-a-l orifice, and, in the women, a tampon soaked with contrast medium marked the vagina. Video radiographic images and supplemental 100-mm static camera images were obtained.

RESULTS: During defecation, six patients had no puborectalis muscle effacement, four patients had partial effacement, and one patient had complete effacement. No rectal emptying occurred in five patients, and emptying was incomplete in the rest. Three patients developed an intussusception, and two developed a posterolateral pouch.

CONCLUSION: Defecography readily demonstrates rectal outlet obstruction and the failure of the puborectalis and a-n-a-l sphincter muscles to relax. These are frequent findings in MS patients with intractable constipation.

PMID: 8153339 [PubMed - indexed for MEDLINE]
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Old 07-07-2011, 04:26 PM #49
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Originally Posted by jackD View Post
Defecography in multiple sclerosis patients with severe constipation.

Gill KP, Chia YW, Henry MM, Shorvon PJ.
SourceRadiology Department, Central Middlesex Hospital, London, England.

Abstract
PURPOSE: To evaluate defecography in assessment of anorectal function in patients with multiple sclerosis (MS) who have intractable constipation.

MATERIALS AND METHODS: Eleven patients with MS and constipation (10 women, one man) underwent defecography. A total of 130 mL of barium, liquid (20 mL) and paste, was introduced into the rectum. A dab of barium marked the external a-n-a-l orifice, and, in the women, a tampon soaked with contrast medium marked the vagina. Video radiographic images and supplemental 100-mm static camera images were obtained.

RESULTS: During defecation, six patients had no puborectalis muscle effacement, four patients had partial effacement, and one patient had complete effacement. No rectal emptying occurred in five patients, and emptying was incomplete in the rest. Three patients developed an intussusception, and two developed a posterolateral pouch.

CONCLUSION: Defecography readily demonstrates rectal outlet obstruction and the failure of the puborectalis and a-n-a-l sphincter muscles to relax. These are frequent findings in MS patients with intractable constipation.

PMID: 8153339 [PubMed - indexed for MEDLINE]
I had a defecography and nothing passed. The doctor that administered the test, said everything just sinks to the bottom. He said my body is shutting down, and my doctors need to figure out, why.
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Old 07-07-2011, 07:01 PM #50
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I had the same problem in that I would go every if not every other day but it was cement hard chunks and they were painful and sometimes sharp to pass. my gut was sooooo slow! Ended up in the hosptial and dx with gastroparesis (frozen stomach) stuff just sits there, and even if/when it hits the intestine it eeks along at its own slow pace. Frequently the chamber would stay full for a day or more because I dont have the nerve signal that says to let it go.

I stared on a drug called Motillium that we had to order from outside of the USA. My GI was instrumental in helping me figure the whole thing out. My vagus and phrenic nerve have been affected by MS, and therefore stool sits for a loooong time in my intestine till something triggers the opening at the bottm to behave and the opening at the top to push to send more down.

I tried miralax and it worked great for a bit and then....fudgies! couldnt regulate it for my needs. Tried Reglan (which empties your tummy/intestine but it gave me twitches, tics and tremors. Those can turn permenant so I had to stop. Laxatives just made it soft, but not easier to give my brain the signal that it was time.

I had a complete work up by the GI team so they could figure out whch nerves were involved before I went on Motilium. it wont heal the nerves, but it will supply the same signal to the brain that its been missing. I take it 15 mins before each meal I eat and as it starts working, the stomach and intestines get the message that its time to work. I do not have diarrhea, or constipation anymore, just a normal routine most of the time.
Hi, Dej.

You mentioned in your "Welcome" post that bowel problems were one of your 1st symtpoms of MS.

Did you have brain MRI's and MRI's of the spine to get your dx of MS?

Or, were you dx'd based on the bowel not functioning correctly?

I had brain & spine MRI's in '07, and only 1 tiny white dot on my brain, nothing on my spine.

Chelle
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