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.

[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

[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.

[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 :)

[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. 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! 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

[cassandra]

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