motility disorders

[Deborah LeMoine]

Hi, I am a 36 year old Canadian.  I have had problems with constipation/slow bowel for at least 10 years.  Three years ago I was diagnosed with motility disorder.  This causes acid reflux, sore esophogus, swollen throat, and weight loss (3 years ago 15 pounds).  I had a "scope" done with no findings.  I was placed on Domperidone which helped.  For the past several months the exact symptoms have developed again.  This caused me to have to leave work and go straight to my GP on two occasions three weeks ago.  The GI specialist confirms the motility disorder again and has placed me on Cisapride, 20mg twice a day.  This has helped the constipation and thereby alleviates the reflux.  A visit to my GP three weeks ago resulted in a plane abdominal Xray confirming my bowel was completely full and an enema was performed.  Last week I had a barium enema.  I have been unable to work for the past two weeks (I am a court clerk but do not feel any work related stress).  The Cisapride seems to be working, slowly.  A simple walk to the store can cause reflux and nausea, even the motion of the car when I drive.  I am wondering if the medication, Cisapride, will be long term for me and the possibility of recurrence or if this will be a one time deal.

[Patti]

This is in response to Christin:

There is a pediatric gastroenterologist at Boston Children's Hospital who is wonderful.  He does research and specializes in motility disorders.  It sounds as if Boston wouldn't be too far to go (possibly closer than Pittsburgh).  It may be worthwhile for you to contact him.  E-mail me at ***@**** if you are interested.

[Christin]

Dear Sue,
I am an eighteen yr. old high school student that has had problems similiar to yours for about the past six years.  When I first started having problems it consisted of severe abdominal pain and severe constipation.I would go weeks without passing stool.  Three weeks maximum.  My doctor also believed that I was nuts.  He eluded that it was stress or that it was all in my head.  Like I really want ten pounds of poop stuck in my intestines!  I would always feel sick to my stomach but could never throw up. He placed my on Propulsid also but that made in feel even worse.  After I got rid of my first doctor the doctors at A.I. DuPont in Delaware discovered that the blood vessels suppling blood to my jejunum were not fully developed due to having gastrochesis when I was born. So in 97' I had 18'of my jejunum removed.  Even though I had surgery I still have problems. From the end of January 99' to March 99'I was out of school and once every two weeks I would place a tube down my nose and into my stomach. From here I would hand pump a jug full of GoLytle (laxatives used to clean out patients before a colonoscopy)into my stomach to help clean me out.  I have visited two other hospitals other than A.I.  I have also been tested by some new gastroenterology devices when I ventured to Pittsburg Childrens Hospital. They can't seem to find a thing. Some think that I had a virus that paralyzed my colon, many believe I have a motility disorder, and I believe that part of my colon and rectum have undeveloped blood vessels also.  At this point though I don't really care I just want relief.  Lately I've been passing stool as large as oranges. No lie I know you must think I'm nuts.My doctor has also started my on Domperidone hoping that this will work but yet again it isn't.I feel very bad for you. I can't imagine only eating 900 calories a day that has to be horrible.  I should be thankful that I don't have that problem also. Thanks for listening to me and all of my problems.  I hope that you find results and relief quickly!

[marie]

I have diabetic gastroparesis and it seems resistent to most of the treatments.  I take 20mg. Propulsid four times a day. Nausea is sometimes a problem,but all the rest of the symptoms are very bad. I am now anemic. My gastroenterologist does not want to prescribe domperidone.  I am so ill with the gastro that I've just about become housebound. Any help would be very much appreciated, particularly about medication.  Has anyone any information on a Spinal Cord Stimulator for gastroparesis?
I have one for the treatment of the chronic pain of diabetic
neuropathy and it does help the pain. Thanks.

[Ida Lou Holland]

I have been diagnosed with Nutcracker Esophagus.  I am having trouble finding information about this condition and would like for you to tell me about this and where I might find other information.

[HFHSm.D.-Gastro-rf]

Dear Deborah,
there are many possible causes for gastrointestinal dysmotility.  Abnormalities of the muscles or nerves of the gut can cause slowed movements.  Mecications that have anticholinergic side effects e.g. antipsychotics can slow motility.  Finally, there are diseases e.g. diabetes, hypothyroidism, and scleroderma that can interfere with motility.

It is impossible to predict whether you will need continuous treatment with prokinetic agents.  We know that the severity of symptoms can fluctuate.  If a specific trreatble cause is identified, then you may not need the prokinetic agents.

[Carol]

Deborah:

What you have sounds like gastroparesis, I have it too and suffer the same problems you do. With everyone it is different. You may need to be on Cisapride for a long time, depending how long your problem lasts for. If you have had this for 10 years, then my personal feeling is you will probably need to be on it long term.

Unfortunately gastroparesis usually doesn't just go away. I will have to deal with this for the rest of my life, and I take Domperidone because the Cisapride gave me bad side effects. Diet has a lot to do with things and you can minimize symptoms through diet exercise and your medication. You can e-mail me at ***@**** if you would like more help.
Carol