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 (response to Patti)]

Thank you Patti for the recommendation.  Right now I am looking in to going to John Hopkins Medical Center in Baltimore, MD.  I would love to try out Boston's Children's Hospital but I'm afraid they may not take me since I'm eighteen. If it doesn't work out at John Hopkins though I'll look into it.Thank you so much for your help!

[Patti in response to Christin]

If Johns Hopkins doesn't work out, Boston may because your problems started in childhood.  I wish you well.  Please let me know how you do.  My son's problems are the opposite of yours.  He has spent his life with severe reflux, esophagitis, Barretts esophagus and now because of the surgeries he has had (4 in all) he has dumping symdrome.  The doctors at Children's Hospital in Philadelphia told me to "keep him comfortable" when he was 7.  The surgeons there didn't think he had enough stomach tissue left.  We were then led to Boston Children's where I'm sure what happened in nothing short of miraculous though he does still have problems.  His problems are now much easier to deal with than before and its been 2-1/2 years since his last surgery.

[Anne McQuade]

I have severe gastroparesis which none of my doctors or the doctors at The Mayo Clinic can find a cause for. I also have/had atypical, extrapulmonary sarcoidosis or the liver and bone marrow. The two do not seem to be related. This has been going on for 3 years. I have lost 85 lbs (which since I was so overweight is the only GOOD news!). I am on Propulsid 20 mg 4x a day and Prevacid for the acid that builds up in my stomach. I have a j-tube through which I get 1000 calories a day. Losing weight is great, but I fear what will happen once I get down to a healthy weight. I am connected to a pump 10 hours out of every day. I haven't been able to keep down any food in months. The cravings get to me sometimes. I WANT TO EAT! Is Domperidone helpful and is it approved for sale in the US? Does anyone have any suggestions?

Thanks for letting me vent :)
Anne

[Mary]

A couple years ago my gastroenterologist decided, by process of elimination, that I had slow gastric emptying and prescribed Propulsid, which did help.  However, I stopped taking it when I began experiencing an irregular heartbeat (premature ventricular contractions).  I did some research and read about how many of us could have an enzyme deficiency, particularly magnesium.  Anyway, I began taking the chelated form of magnesium (I take 400 mg spread out during the day) and I haven't had any digestive problems since.  That's the good news. The not so good news is that I still experience PVC's.  They vary in intensity from day to day but most often occur after my evening meal.  I have cut out all caffeine, drink plenty of fluids, and on occasion have one glass of wine or beer.  Read somewhere that the vagus nerve can affect both the heart and digestive tract.  Just wondered whether any of you with slow gastric emptying (gastroparesis) also experience any kind of irregular heartbeat and what do you do for it?

[kelley]

I am a 28 year old female.  About 1 year ago I went to the gynecologist. While doing a papsmear he felt "something" inside of me that prompted him to ask, "Have you been constipated lately?"  I told him no, but had no idea what was in store for me the night ahead.  That night, I started having lower abdominal cramping.  This sharp, stabbing sensation awoke me out of a deep sleep.  It was so painful that I almost passed out while on the comode.  I also felt hot, even though I wasn't running a fever.  Relief came after having a bowel movement.  The bowel movement was hard and constipated, but subsequent bowel movements were less firm (had a shredded, rough appearance).  This episode lasted a couple of days before going away.  I had a little nausea associated with this episdoe.  The following day I called my gynecologist to tell him what had happened.  He recommended that I increase water, fiber, etc.  I have done all that...8 glasses of water, fiber pills, and a normal diet.  Despite all this, I still suffer from constipation about once every 2 weeks.  Just two weeks ago, I found out I was pregnant.  Since then I have suffered continually from the same old sharp pains in my lower abdomen and constipation.  These pains keep me from sleeping at night.

My question is this:  WHAT COULD MY PROBLEM BE THAT HAS PLAGUED ME OVER THE PAST YEAT, AND PARTICULARY AT THE START OF MY PREGNANCY?  I understand that my being 5 weeks pregnant may be exacerbating my "problem", but I do not believe it is the cause of my "problem".