Bowel and bladder problems: What Is Autonomic Neuropathy? (Icky topic: BEWARE)

[Carolina]

Thanks Scottie,

My spine is fine (lots of MRIs, some very recently).  I had a huge array of tests re my profound PN, to rule out possible causes.

I meant to post this link with my 'gross' topic:

http://www.healthline.com/health/autonomic-neuropathy

What Is Autonomic Neuropathy (AN)?
Damage to the nerves that help your organs and organ systems to function can cause a condition called autonomic neuropathy (AN). This nerve damage disturbs signal processing between the autonomic nervous system and the brain. Injured autonomic nerves can affect your:

blood pressure
heart rate
perspiration patterns
bowel movements
bladder emptying
digestion

And then there are many columns of very basic information. 

Some doctors seems to think at AN is ONLY related to heart rate and blood pressure, but I have ignored them.  Anyway, no one has any treatments for the basic cause, which is damaged nerves.

Oh Scottie, to choose between pain and leaking bowels?   D..ned if you do and D..ned if you don't!

Oh, I haven't talked to 'my doctor' about it.  My neurologist doesn't want to hear this stuff (I've tried)...who else should I ask?  It is what it is.......I do endless research.....      but I don't see any answers.

Hugs,  Elaine

[irish]

My heart goes out to you with this problem Caroline. I am also sorry that your neuro doesn't want to deal with it. There has got to be some obscure specialist out there who deals with these problems. He might live in Timbucktoo but one would think that there is some mention of him or her on the net.

Will keep my eyes open. There is always the option of having that part of your colon removed and wearing a bag. This is not as traumatic as it used to be due to recent developments in bags, equipment,etc. Thanks for sharing all this cause I am sure it wasn't easy. Those of us with autoimmune sure get some stuff to deal with and then the world looks at us and thinks we are not sick. It sucks at times. Pardon my gramma language. Irish

[irish]

I just scanned the article on Bells palsy of the GI tract. Wow, if we live long enough we can get anything. Complicated information and disease issues. Irish

[Scottietottie]

Hi 

I would have thought autonomic neuropathy ought to have come under a neurologist but another doc you could try would be a gastroenterologist or a urologist.

The not emptying must be worrying and could lead to infections.

My GP is considering possible autonomic dysfunction in regard to night sweats and hot flushes during the day. Its a good 10 years since the menopause and she tried to tell me it was still it - but I really don't think so. She also tries to blame thyroid function but it doesn't matter if I swing hypo or hyper - the sweating is the same.

Take care - Scottie 

[MAT51]

Oh my beloved angels, you are so kind and helpful.

This problem predates my RX for gabapentin.  I don't take Lyrica.  It has been part of my life for about 6 years now.  The real issue is the failure of my sphincter to close and for the 'paste' to clear my bowel.

The idea of a Fleet Enema is terrific, Kathy.  I will try that soon.

Dear Irish and Jasper, I no longer have constipation, by the way, but back in the day when I did, I used glycerin suppositories (there is a jar of them in the cabinet, but I don't use them now).

Of course I'll say 'the constipation is gone' and it will return, but somehow I doubt it.  But WHAT DO I KNOW?

You know, I thought the pads for urine leakage were so embarrassing....little did I know what lay ahead.

I know it is the autonomic neuropathy, and there isn't a thing to do about it, really.  Except patience, persistence and acceptance.

Hugs, Elaine

Elaine I really feel for you and what you are suffering. I was going to post with very similar struggles to see what people thought. Mine started when I was injecting methotrexate and I blamed this for a while and stopped because of exactly the paste issue you describe. And it all resolved for a while I must say. But then I had these four lousy hospital stays last year and each time I suffered from uncharacteristic constipation. After my gallbladder was removed and once the ensuing sepsis etc had resolved everything returned to normal in the bowel department.

Then we moved and our rental accommodation for six months had its own untreated water supply. Silly fool that I was I gulped this lovely tasting water down with alacrity. At the start of December I suddenly started feeling terribly sick and could barely touch food for a few weeks - vomiting and suffering diarrhoea occasionally. As things improved I noticed a big change in stools and this has continued - they look like clay with coconut sprinkle mixed in. I did my research and eventually decided that I'd suffered Guardiasis and been left with a milk protein intolerance as this causes constipation. I don't suffer from loose bowels at all but sometimes things get pasty.

The constipation did improve for a while with milk/ dairy avoidance. But now I've noticed that, as my small fibre neuropathy flares so the constipation and white speckled clay stools return. And I seem to have no control over my sphinxta muscles. They don't always do the job! I now wonder if dairy issues are responsible. I did reintroduce gluten a few months ago as part of the gluten challenge but haven't noticed any worsening of symptoms at all. My thought is that my autonomic nervous system is not working as it should and nothing comes out until it virtually rolls out by itself in little rabbit poos! Despite eating masses of roughage in form of daily prunes, lots of fresh food and veg and loads of water plus laxido - still it takes days for anything to happen. X

Because of rectal bleeding I've got a colonoscopy comimg up. I don't suppose anything more than haemorrhoids will be found but, like you, I'm absolutely sure this related to my disfunctional nervous system. I have no suggestions other than perhaps some exercises similar to those we are recommended for pelvic floor - but tail end. Have you a physiotherapist you could see about this? My late mum had similar problem and said the physio really helped her.

[Judie P]

Please let us know what you find out, Carolina.  I am in the same boat.  I don't have a neurologist to help me out, but I believe mine is auto neuropathy, too.  Had a colonoscopy and endoscopy last November and all was well.

[gurs]

I went to my GI doc yesterday, but didn't really get into my entire problem. I told him, and he kinda blew subject off when I mentioned the CNS issues and bowel problems etc. Just said my test results from my recent Gastric emptying test was very, very bad, and gave me a script for the domperione. I don't think that is really going to help with my esophagus and colon not moving as well. Anyways, not much they can do anyways. Im probably going to give rituxan a try again soon and see if it helps. When I had it years ago, it seem to help somewhat.

Gursie

[Carolina]

Hi Gursie,

I looked up Domperidone and Wikipedia says it's illegal in the US.  Do you live in Canada?  Just wondering.

I really have come to the conclusion that my 'problem' is just that....a problem, but not super important on the scale of things.

And there just isn't a 'fix' or solution.  What I know is that it is related to the other neurological issues I have.  And I know why I have neurological issues.  My Immune Disorder is attacking my nerves and has been for many years.  At least my mind still seems pretty clear, and I can see and use my hands!  That means I can be here with my Sjogren's Angels.

I think doctors probably don't really understand how difficult these neurological issues are (bowel and bladder, etc.) but I know that since they can't really DO anything, it isn't going to be something they spend any time on, anyway.

This is where support groups and perhaps attention from nurses specializing in helping with these problems would be a good idea.

These are quality of life issues, not life and death.

I certainly feel more empowered now that I've come out of the closet!

Your issues, by the way Gursie, are far more difficult than mine.  I am always amazed at what we manage each day.

Hugs,  Elaine

[Judie P]

Ii am seeing my nurse practitioner tomorrow afternoon and going to go over these problems with her.  I just can't tell what is SJS and what is not.  Had a neurologist that didn't give it the time of day.  However, my nurse practitioner is on top of everything, always.  I just want to make sure I am not having some bladder problem, etc.  My rheumy is great, but she is on maternity leave! 

[Synnove]

I wonder if not many of these GI and GU related problems here are related to Neuropathy.  I am actually pretty sure that many of these symptoms are related to peripheral neuropathy, and others to autonomic neuropathy.

A good GI diagnostic test would be a " Gastric Emptying Study".  This is a test that measure the time it takes the food to empty from the stomach.  The test takes about 3 hours.  An abnormal result from this could be for example a delayed time, diagnosis would then be gastroparesis., due to autonomic neuropathy.

A good neurologist that specializes in neuropathy would be able to do many different EMG studies.  I think there is a EMG study that can be done on the Pudendal nerve that ends in the perineum.  This nerve controls both the urethral spinchter and the anal spinchter.

I hope for all of us with these difficult symptoms and chronic conditions will get some help.  These symptoms are also difficult to discuss with doctors.

All the best

Synnove

[gurs]

Elaine,

Im actually in the US. My doc wrote a script and gave me a card of a Canadian pharmacy to call If I want to try it. He said all his patients use them. Im not concerned with this so much as I am my intestines don't move. I have neuropathy all over 24 hours a day, but used to the pain. I don't want to try any medications for this either. I have intolerance to many medications like most of us and don't want to deal with side effects. I find most are just too drying for me.

I know its for certain CNS issues, and know they cant fix this either. I will talk with my rheumy soon...she knows about everything. I don't expect a lot if I get Rituxan, but I need a big gun to possible slow down any further damage?

So many of us have so many issues that we are dealing with. Ive learned to prioritize whats crucial to get fixed asap and go from there. I push myself so hard. My doc is just amazed. I have to keep doing things to keep me sane and feeling normal. Ive also learned to pace myself and do get a lot of rest.

Thanks for all the help and advice from everyone.

Gursie

[Judie P]

Saw my nurse practitioner yesterday.  Had all the symptoms written down for her.  She must have been tired because she wasn't her usual attentive self.  She feels that it is probably all digestive issues from eating too much salt, stress, and lack of fluids.  So for the next two weeks, I am to reduce salt intake, de-stress and drink tons of water.  She also has me doing Metamucil and magnesium.  She explained that she could not move forward with any other tests until we try and get my digestive system in balance.  Right now I am in the constipation phase but when I add stool softeners, etc, I get the paste and my spincster does not close either.  Takes forever to wipe and then I have to keep checking to see if more has come out.

Right now I am sick as a dog.  My husband gave me his cold and I still have to work.  Let's see what the natural cold medicines do to the ongoing problem!