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.

[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

[Sue (comment to Deborah]

I have the same problem both you ladies have. Very frustrating
I can't even go out with friends for a meal. I can eat very little
at a meal. I would like to find out more about what you are
going through. I'm on Propulsid 10MG 4 times a day. I tried
the 20 MG but it made me real dizzy. I have lost 7 pounds
since I've been on it(7 days). The last couple days I am
very Ill after I eat. I can't lie down or sit down after meals.
I'm only comfortable if I am standing or I go for a walk.
I only eat about 900 calories a day. I eat very small meals
at a time. only 3 meals a day I feel brtter if I don't eat at all. The propulsid makes me feel better and I am constipated
since I started taken it. But the last couple days I belch alot
more and I feel like the food is stick in my throat. I have
had this for 11 years. It started out vomiting after meals.
I had GI series done and food was still in my stomach for
14 hours after I ate my last meal. Some people think it's
in my head and that makes me mad, but I can't help it If
I can"t eat much at a time. I still vomot after meals most
of the time. My E-mail Address is JMinkie@ Juno.com. Thankyou
for any advice you can give me. If anyone else has any advice
for me or can help me please E-mail me. Thanks for your time.

[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.

[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.

[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!

[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".

[Mary]

There is a news alert today from Johnson and Johnson regarding the dangers of Propulsid.

[cassandra]

Mary,   Please tell us what the news alert from Johnson & Johnson said about Propulcid!!!!

[Shelia McGee]

Christin, I can relate to "it's in your head"! I'm so sorry that you are getting the run around much like the rest of us. I have been doing battle with the same problems you have. I've had all the tests except the transit marker for which I'm still considering. The problem is, you can not take laxatives when taking this week long test. If I go one day without correctol, it would take me a week to have a bm and I will look like the Goodyear blimp, not to mention pain and inflamation (inflammation). The bowel prep prior to a colonoscopy almost killed me. I blew up to a record size and when I finally had a bm, the pressure tore my hemmoroids (hemorrhoids)! I warned my dr. but of course, I'm stupid therefore he did not believe me until the procedure.
My disbelief is how I have been passed around by specialists that don't want to deal with this and I can't get any of them to prescribe anything, not even reglan. I don't have nausau, thank God! Just can't poop!Tests reveals lack of sufficient blood supply in some areas and a small polp was removed and this gal was sent home in severe pain, swelling and no meds.
I have read abstracts that erthromycin has been helpful in some patients. Have you tried?
You're not crazy, I'm not crazy but I'm heading in that direction! ><> Praying 4-U <><
***@****  (E-mail if anyone has any suggestions)

[Mary]

The news alert regarding Propulsid can be found at:  http://www.msnbc.com/news/361370.asp
"The popular hearburn drug Propulsid can cause dangerous irregular heartbeats and even sudden death, the government said Monday.  The medicine should be used only as a last resort--and only by patients first given heart tests to ensure they are at low risk for the side effect, it warned."
What I would like to know is whether the damage is permanent.  I stopped taking it about a year or so ago because I was experiencing premature ventricular contractions.  I still have them but not as frequently.
Mary

[jennifer]

Hi! I can relate to the discomfort you feel every day with this problem and my heart goes out to all of you. I am 23 years old, and was diagnosed with idiopathic gastric and colonic atony (atony because there's no motility) almost 3 years ago. For years my doctor believed I was anorexic and sent me to a psychiatrist, and she told me my symptoms would get better after therapy was completed. Years later I was getting much worse and went to Mayo Clinic, after hearing anorexia from them I almost believed it. When my weight got down in the 70's my psychiatrist sent me to an eating disorder hospital. After a one hour consultation the doctor at the hospital told me I wasn't anorexic, and he called a GI doc who admitted me to a different hospital. After a gastric emptying study and a colonic transit study I was finally told, "gravity is the only thing moving food through your system, no wonder you can't eat." I was so relieved to know I wasn't crazy, and this "thing" I suffered with had a name! I am on TPN (I.V. nutrition) indefinitely, I am unable to take anything by mouth and take all meds intravenously. Unfortunately, even though I don't eat I still have all the horrible symptoms. I thought if I didn't eat I wouldn't have to worry about BM's anymore. I still have quite a problem keeping my intestines unclogged, enemas and suppositories used to work, and I would use one of these remedies every two weeks. (when my pain and reflux worsens I can tell "it's time".) Now these things don't work at all. Not too long ago I was so clogged up I had to get a scope with irrigation, done under general anesthesia. Since I can't take pills (I was desperate and tried anyway- took 13 days to work and I was VERY sick), and I can't drink anything like Miralax, I am really in a predicament. My doctor said e-mycin and Reglan are the only meds available I.V., but I'm allergic to both! He doesn't know what else to do, I'm hoping the doctor here might be able to give me advice. If anyone has any ideas- even if it's an experimental treatment or surgery- anything- I would really appreciate it. I heard on the news today they've found a way to regenerate nerves, and that it could help those with paralysis! I hope this might be the answer for all of us. Thank you for your time...    Jennifer :)

[Susan]

Ladies, I feel for you all.  I have a motility disorder and I am very angry and sad about it.  It effects most every aspect of my life and it also shows, my hair is also falling out, my skin has changed.  This has gotten progressively worse for me over the years.  It began around 1991 when I would get stomach aches and noticed hair loss.  Then I started getting alternating constipation and diarreah. The diarreah went away and now I am severely, chronically constipated  (only enemas seem to produce an effect more often only minimally. Every once in a blue moon I will have a good week or two where I have normal bowel movements, for no understandable reason.  I have tried many GI tests, specialists and naturopaths.  I have removed dairy and gluten, had Candida treatment, used digestive enzymes, and have my thyroid regularly monitored.  I am far past my ropes end, but life goes on so I fight.  It is very frustrating.  I have a few more things to try.  I just turned in an Adrenal test (haven't heard back yet) and in addition will soon take a hormone level test.  If I am blessed with a good week or two it will be diretly after getting my period, but slows to a stop by the 14th day of my cycle when I begin ovulation.  The hormones change at that time.  So I am investigating and may try taking natural progesterone.  I am also considering trying an anti-depressant such as Zoloft or Paxil, not because I'm depressed, but because I have heard that some women who have consitpation problems have had successful results with Zoloft.  I have a good accupunturist and start attending three times a week later this month, maybe using some herbs from there too (the real stuff from a traditional herbalist,not from the shelf of a healthfood store).  Accupuncture has successfully helped me with two other health problems that are now past tense.  If nothing works, I may cosider having my colon removed.  I have been reading much by cancer patients who've had to have that and their new rather than dysfunctional colons have restored quality to their lives.  I am glad I found this web page so I know I'm not alone.  I have many additional symptoms as a result of my constipation - poor cognitive function; bloating; irritableness; rarely feel refreshed even after sleep; very hungry when constipated but can't eat much because I know the consequences; low grade nausea;  and (does anyone else experience the following?)  lines around my nose/sinuses always (kind of like when you wake up in the morning before the swelling goes down in your face and you have what looks like a parenthese on each side of your nose) and a blue outline on the bottom of my lower lip.  If you have any information that may help, or if I can help, please e-mail me at ***@****.  Thanks for listening, sorry so long.

[robyn]

This is for Mary,
I have been sick for two years with reflux, and now the doctors are thinking it may be motility disorder.  I also have Super ventricular tachacardia.  I get "attacks"  where my heart rate goes to 220 and cant be slowed without intravenous drugs.  I would love to chat with you more.  Maybe we can compare notes.

Drop me a line   ***@****

:) Robyn

[HELP!]

Has anyone ever noticed a foul odor of undigested food or bowel which seems to emit from their body due to this disorder?  If so please contact me at ***@****.

[Karen]

dear robyn:

I was diagnosed with non-specific motility disorder in april, 1998.  I have not been able to find much info on it since.  I too have svt.  I currently take procardia xl for the chest pain associated with the dismotility and toprol xl for the svt after a radio frequency ablation failed to correct the problem.  I still get what feels like spasms in my esophagus but the toprol is helping with the svt.  It amazes me that there seems to be no treatment for the dismotility.  let me know if you find out anything more.  Have you had a motility test done?  It was very uncomfortable (for me) but at least I got a diagnoses.  I was not able to eat for almost 6 months.  Anything put in my mouth, whether it was water, jello etc. caused severe pain, like a tennis ball was stuck in my chest.  

Good luck.

[Deborah LeMoine]

Hello.  Just an update to let you all know that I have found RELIEF!!!  After 20 years of suffering with chronic constipation, relux, barium enemas, barium swallows, etc. it has been decided that I have something between irritable bowel to spastic colon.  I have been taking two peppermint oil gel capsules daily and what a difference!  It's been almost a month without missing a daily bowel movement (sometimes up to three a day).  My stomach is making gurling noises the likes of which I didn't think a stomach made.  Apparently the peppermint really relaxes the tight, constricted muscles in my digestive tract.  A local doctor has recently been to a seminar on these types of digestive problems and has been suggsting peppermint oil to her patients.  The local nutrition store can't keep them in stock.  On days when I feel a little bloated, things are slow and I get that tell-tale swelling at the back of my throat, I take a couple teaspoons of pure psyllium fibre husks.  I have managed to turn this thing around WITHOUT DOCTORS.  I haven't had an incident of reflux since either.  Good luck to you all.

[Michael]

Hello,

I have been reading the different postings on the net in regards to stomach motility problems...they all paint a very familiar picture to me. I am a 29yo gastroparesis sufferer, it's been hell trying to fing a medication that works until I landed on domperidone... I take 10 mg 4 times daily and what can I say...I wish i could get it here in the states...It's a little bit of a hassle to get it through Canada but the company I get it from is most helpful and take my prescription by fax or mail.
If you want to try domperidone and see how this helps you give me a shout. Until this drug gets approved here I want everyone to experience the benefits (hopefully!) as I have!

God bless

Mike
michael_valence***@****

[Jane]

Deborah,  I have some questions about the peppermint you take.  I, too, have most of the symptoms you have, including pain in my right side of my rib cage.  Do you also have gastroparesis ?  Is the peppermint you take enteric-coated ?  I only ask because peppermint makes reflux worse.  Do you take it on an empty stomach ?  Thanks, Jane

[Salim1921]

A related discussion, Throat-Clearing was started.