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).

Read Dejibo's posts. She is a wealth of information!!!!

I feel, due to her, I may actually be able to get this issue resolved.

Do you get an "urge" to have a BM? I never get an urge. And I cannot feel after I have had one.

Well, I really had better get off of the computer, and finish packing or my DH is going to give me one of his "looks".

Chelle