But, your doctor doesn't know the cause, right?

My G.I. Doc said mine is neurological.

Well, I had better try to get some sleep. We are leaving this afternoon, and I have to at least have my clothes, etc. ready.

Talk to you Thursday evening.


Chelle

I was struggling, suffering, took forever - once a week or so got a large constipated into rocks, hurtful poop out. Such an effort and fear of never completing task! Fiber, etc. never seem to help. A urologist told me some Miramax in my coffee every day. Increased some a little every day and found perfect dose. Too much I get squiggles and fudgies. Now 1-2 times a week a formed, but soft enough to easily some out nice size stool is formed and passed. I hate using a drug (Miralax) everyday but the benefits outweigh anything else. Ran it past my GCP and she's fine with it. I'm much happier now!

Hi, Kicker.

My problem is that the internal **** sphincter muscle does not send messages to my brain, so, the only way stool passes is when the bowel is too full, and the stool has to be firm enough to force the muscle to open, but, here's the major problem, it will only allow a small amount of stool to pass, and then it clamps tight again. I am unable to empty completely. Soft stool will not pass, at all, and I am miserable, as it makes the nerves in my spine hurt, all the more. My G.I. Doc and I have tried Miralax, etc. but it doesn't solve the issue with the sensory nerves in that muscle.

Hoping my new Spine Specialist will be able to give me some answers on Friday, or at the very least, refer me to someone who can help me.

I'm not Dx'd yet.

Thanks for replying. I really appreciate it.

Now, I have to get ready to go out of town for 3 days.

Chelle

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.

Dejibo,

This is the most useful information I have received. I will talk with my G.I. Doc about the possibilty of ordering Motillium.

You've described my problem to a T!

Thank you so much.

Chelle

Took me YEARS to get the GI team to understand that while this doesnt look like an issue, it can be very disruptive to a life. Once the chamber would get full, it just sat and got harder and harder till finally enough material would force it along, and it was so dried and hard by then it was painful. I started to use Prep H on my finger and I would go rescue some of it that I could reach to provide some relief. Then that became a routine because it would provide some relief at the back door for me. You can use KY jelly, or lube or other stuff to really wet your finger to go on your mission, but my choice was prep H. My lower region just wasnt getting the signal that it was time to push it on out. I felt my belly was ready and I felt my lower was ready, but even pushing I felt like I wasnt co ordinated and couldnt get the result I needed, because I was just making my face red, and not getting enough pressure into my bottom to make anything go.

My GI MD at Dartmouth Hosptial in Lebanon NH is making a documented case of me to put in the annual of reports so that others seeking the same type of help can see that other MS patients do have destruction of nerve tissue in the intestine. The lining of our intestine is almost identical to our brain, so if MS attacks the mylin or fat around the brain and eats into the nerve fibers, why cant it eat into the fat around our intestine and eat into the nerve fibers? Most wont put it together because the GI tract has its own nervous system and generally isnt well controlled by the brain, but if you consider that its been attacked the same as the brain would be...you get the answer.

Most folks take Reglan, and its normally well tolerated. Some of us get tics, twitches and grimaces from the drug and it can be permenant nerve damage, so I was tried on a whole host of meds till we had to order from over seas to get Motillium. it does the same thing as reglan, but somehow doesnt make me twitch.

Research gastroparesis. they have several forums out there with tips and tricks on how to eat better, and interventions to help. 50% of the population just takes the reglan and get on with their lives. Some folks have episodes where for 3 months its awful! and then all of a suden things get better for no reason. its like having a flair of MS only in your tummy, not in your head. Some folks have permenant damage from the attacks and have to stay on meds. I have now backed off to once a day with my meds, but wouldnt hesitate to go back up if needed.

Tremendous relief to know I wasnt weird, strange or alone. The MS team took a little longer to come on board till the GI team presented them with study after study or MS presenting in the GI tract. So, we are the pioneers in getting the MS teams to see that this stuff can nick the tummy too. You may meet with resistance, but the more folks that get documented, the more hope those behind us have.

Goodluck write me privately if you wish.

I have had to dis-impact, as well. I had a Dynamic Proctography at University of Chicago in IL, and the doctor that did the test, told me, "Everything just drops to the bottom & sits there." He said my body was shutting down, and my doctors needed to find out why.

In '06, I lost 18#s in 5 months. Just lost my appetite. I was down to 72#s at one point, up to 78#s now.

I found a web-site that lists compounding pharmacies in the US for Motillium.
I'm going to take it to my G.I. Doc and ask him to let me try it.

http://www.breastfeedingonline.com/d...shtml#ILLINOIS

(There are other States, but IL is closest to me)

I'll P.M. you privately when we return from our trip on Thursday evening.

Thank you so much for your input.

Chelle

I got a prescription for it and use a Canadian or online pharmacy I pay $18 for 100 tablets. There is no need to pay huge prices for this stuff. It comes prepackaged in blister packs and stays fresh a long time. You must have the prescription to get it tho.

My MD wrote for 90 tabs at a time, and they come 100 to a pack so remember that when asking for the script.

Let us know how it goes.

Dejibo,

I don't have the words to thank you, properly.

I appreciate knowing I can save money, as my DH is retired. Although, this is not the retirement either of us ever expected. I spent two years in bed, in such miserable back pain, until my D.O. finally sent me to a Pain Management Clinic, and I had diagnostic nerve blocks, and one showed the pain is coming from the medial branch nerves. I don't understand, why, my former Neuro did not know about these nerves, when I told him I had the nerve blocks done. He was angry that anyone did nerve blocks on me.

DH retired young, 11 & 1/2 years ago, at the age of 57. So glad he did, because we had fun before November of '05.

I often think of when we 1st got married 38 years ago, he is nine years older than me, and my Mother was concerned that I would have to take care of him when he was older. Wish she was alive to see who is taking care of who.

Chelle

Oh my, I have THIS exact problem! I have been telling my doctor for ages "It's constipation", but it's really not.

I go MAYBE every 3-4 days if lucky, though I've sometimes reached up to 5. I don't have hard stools, in fact, my stools otherwise appear quite normal and healthy.

I noticed what you've been distinguishing Chelle... it gets to a point where the bowel just 'lets go', like it's finally so over-full, it all comes out at once. That's the ONLY time I feel truly like I've emptied my bowel.

I've done all the recommended: lots and lots of water, lots of fibre, magnesium. I tried stool softeners and bulk-forming capsules. Nothing's really made things better (it was harder stools before, now with the increase in water/fibre they seem otherwise healthy).

It's the fact that I'm only going every 3 days, if lucky, and as you describe, it seems only when the bowel's overfull that it finally lets loose. Otherwise I am bloated for days.

Maybe I should present my case to GP not as 'constipation' (which gets fluffed off) and instead as part of my intestine doesn't seem to be cooperating (or is dormant).