Severe Gastrointestinal Motility Disorder

[lucygirl33]

Hello, thank you for taking the time to read and answer my questions. I have been in and out of doctor's offices for the past year with strange symptoms and the cause has now been identified. I have had just about every test you can immagine. I have had my blood drawn well over sixty times and basically any abnormality has been tested for. I have had x-rays, CT scans, MRI's, Spleen and Liver Scan, Celiac Sprue, Colonoscopy, EDG, Barium Swallow, Small Bowel Follow through, MRCP, a Hida Scan lead me to have my gall bladder out from a very low ejection fraction, a bone scan, Pulmonology workups (no heart problems, cardiac, or lungs.) My small bowel follow through did take over six hours and the radiologist even had me walk in circles through the hospital to get things to move through. I had a sitz-mark test which showed markers still in my stomach and intestines after ten days. I had a gastric emptying study done and my doctor said that my stomach is extremely and severely slow. All of my CT scans show ileus and fluid filled loops of bowel. I have had a Meckel's scan too. My diaphram is actually and very noticeably elevated on one side from what I am told is my stomach and dilated colon. I am only nineteen years old and am very healthy. I am in the culinary arts at school and know a lot about nutrition. I am 5'3" and weigh 105, have always been petite. I never eat white flour or sugar and maintain a healthy diet of complex carbohydrates, fiber, lean protien, and lots of water. This past year I have been tested for food allergies, done elimation diets to count out digestive disturbances too with no difference. I have tried fiber supplements, Nulev, Bentyl, Zelnorm, Propulsid, Domperidone, Reglan, Erythromycin, Magnesia, Krystalose, Golytely, Ducolax, Miralax, and everything on the planet. I do not drink, smoke or take drugs of any kind. I have tried pancreatic enzymes, acidophilous and things of that nature with no help either. The past few weeks I have not been able to eat anything and live off of chicken broth, juice, and jello all made with krystalose mixed in and a lot of Golytely and Ducosate sodium too. I have been working with a doctor at the The University of Denver hospital who told me that my situation is very rare and very severe and that at this point he thinks I should go to the Mayo Clinic in Rochester or the Cleveland Clinic for surgery. My situation is progressively getting worse and he is hoping we act soon before my current meds stop working all together and I am unable to move my bowels at all. I have read some articles on PubMed and was leaning towards a gastrectomy and colectomy with massive intestinal resection. Since I am only 19 and in college for the culinary arts I would like to be able to eat and function like a normal person and am willing to try anything first before moving onto bags and tubes. I was hoping you could offer some advice on the best outcomes in these types of situations. Thank you for all of your time.

[Kevin Pho, MD]

Unfortunately, I cannot offer further any more advice without actually reviewing your case personally.  

You have clearly gone through a very comprehensive GI workup as well as tried a variety of medications to treat irritable bowel syndrome.  I have no further tests or medications to suggest at this point.  There are some cases where psychoactive or antidepressant medications help IBS-like symptoms.

Surgery may or may not be an option in this case.  There are cases where colectomy relieves some symptoms, and cases where it doesn't - there is no guarantee.

Certainly a referral to a reputed medical center such as the Mayo Clinic or Cleveland Clinic would be a reasonable option for another opinion.

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Thanks,
Kevin, M.D.

[tessa0825]

I just want to give you a heads up about visiting one of the big hosp....I have been visiting one for many months and have received excellent care...Mayo and CCF are ranked number 1 and #2 in the country for digestive disorders...Their expertise is wonderful and we are very lucky we have an option to seek that kind of medical care...The one area I have noticed they are very LAX in would be common courtesy and consideration of Pts...In other words, if you begin a relationship with one of these hosp. make sure you follow through with things like calling ahead to make sure no appt. changes have been made or  cancellations that you were not notified about...I am only 200 miles from the one I go to, but, believe me when you drive 4 hrs one way, prepay for 3 nights in a hotel, give up almost a weeks wages, and have done prep and not eaten or drank anything since dinner the day before and then find out after you get there that your appts were cancelled because the Dr. was going to be out, you are not in a very good mood about it.....The good side,they will most certainly offer to validate your parking tkt. for your inconvience!!!If I had been coming from Denver and had that happen I would have really been upset.....All in all, for the care you receive it is well worth some of the inconviences...Good luck, tessa

[PAJ]

Lucy,. I reply regularly to undiagnosed gastro problems , I now use this as a standard reply .The forum doctor has acknowledged yeast infections [sort of] in past debate , I don’t think he treats the condition though . pity it’s the cause of much illness .Take a look at this article ,the authors link fungi with degenerative disease in general , Believe me I have researched yeast/fungal infections for 4 years their conclusions are correct. . You might consider a yeast infection , it’s worth considering. You wont get this information from the docs BTW they are [mostly] in denial over the condition . Doctors today are crippled by the politics of medicine , they practice what has been termed “Defensive Medicine” that roughly translates, if it’s not in the book you don’t get treated. I speak from experience , yeast infections are endemic ,& and are believed to be the main missing link in many of our modern day diseases and sub health conditions. I find it extraordinary that doctors especially on a gastro forum totally ignore the condition , Still Forums could have been invented for situations such as this . Read this article , http://drcranton.com/CFIDS.htm#CFIDS%20Paper it turned out to be my personal “Rosetta Stone” it detailed most of the symptoms that had puzzled both myself and my doctors. As you see he favours a trial on drugs for a diagnosis , from your symptoms if you have the condition you should react fairly dramatically to Nystatin .It’s a very safe drug ,but you must take doses that are up to the job ,that is five million units per day [10 tablets ] try it for a couple of weeks. If you [or anyone] take this advise please report back so we may know how the theory is working out. Good luck"WITH THERAPEUTIC USE 1. Toxicity from orally administered nystatin is extremely low. Dermal application or ingestion of even large quantities should produce only minor GI symptoms. Treatment is usually unnecessary.".........."Laboratory: Nystatin is not well absorbed orally. Unless GI inflammation is present, blood levels should not be detectable. Therapeutic or toxic blood levels have not been established."........"Toxicity due to nystatin is negligible. Even when large amounts have been ingested, ensuing symptoms have been minor. Charcoal, emesis and cathartic should not be necessary."......."ABSORPTION...FROM GI TRACT IS NEGLIGIBLE, & DRUG APPEARS IN FECES. WHEN DOSES OF 8 MILLION UNITS OR MORE ARE GIVEN, INDIVIDUALS WITH NORMAL RENAL FUNCTION MAY HAVE PLASMA CONCN OF ONLY 1-2.5 UG/ML. ... NYSTATIN IS NOT ABSORBED FROM SKIN OR MUCOUS MEMBRANES. [Goodman, L.S., and A. Gilman. (eds.) The Pharmacological Basis of Therapeutics. 5th ed. New York: Macmillan Publishing Co., Inc., 1975. 1236]**QC REVIEWED**" http://toxnet.nlm.nih.gov/cgi-bin/sis/search/f?./temp/~AAAnTaaFg:1 C3 concernedmck(15-Mar-03) .Thanks Paj for you advice. I'll look into that. I used to suffer alot from sinus problems which were attributed by an "alternative" doctor to candida type symptoms, so I somewhat understand the background to yeast infections. Thanks again - I'll look into it and let you know. C4 rose25(15-Mar-03) .SPEAKING FROM EXPERIENCE:Make sure your doctor rules out..HEPATITIS A !!!!!ALSO make sure he rules out...H. PYLORI with the proper tests. C5 paj(16-Mar-03) Everyone concernedmckA couple years ago Mayo clinic released a research proceedings claiming they had research indicating that almost all chronic sinusitus is ultimately caused by inflamation (inflammation) induced by a fungal infection. This research has now been independently reproduced by a lab in Europe. http://www.mayo.edu:80/sinusinfo/index.html Mayo clinic now has attracted a massive grant to study the possibility that fungal infections are involved in more health problems. They are currently pursuing one such clinical trial investigating asthma... they believe that the same mechanism found in sinusitus is causing lung inflamation (inflammation) in asthmatics. http://www.mayo.edu:80/research/crpad/trial_126.html Try this forum for more information http://www.healthyawareness.com/_pages/forums.htm C6 concernedmck(17-Mar-03) .I've read quite a bit into the subject of yeast infections because I also have a condition called endometriosis which again is often related to Candida. When I saw you're suggestion about checking yeast infections, I kicked myself for not having thought of that before - I just didn't realise one could have an isolated disgestive problem. I've started a non yeast, non sugar diet to see if any improvement starts, and will be seeing my doctor in two weeks when I can talk to him about possible medication. Thanks again for your advice Paj.
C2 PAJ(22-Jun-03) .
Sorry forgot the address http://www.mercola.com/2003/jun/18/antibiotics_bacteria.htmCandida Forum address http://www.healthyawareness.com/candida_general/
C3 yoshi(22-Jun-03) .
i am surprised from reading past threads that the author usually a man has been taking antibiotics for 6-8 weeks and report feeling lousy,mucous in the stool etc,do their doctors ever advise them of yeast infection??6-8 weeks of wiping out the good and bad bacteria,upsetting the flora in one's system.a woman would know as she will experience vaginal yeast infection,but men have to look for other clues.prevacid has antibiotics attributes (it is used in prev pac to kill h pylori bacteria),so would prolonged taking of prevacid cause yeast infection??i keep a bottle of natural acidophilus culture (made by continental culture specialist) in my refrigerator and i will take a teaspoon and mix it with my tomato juice drink or orange juice sometimes to improve flora in my system.
C5 PAJ(23-Jun-03) .
Yoshi It’s Interesting that Probiotics do work but are transient , over 400 different species of microbes make up our gut flora, how a microbe gets elected to this exclusive gut flora club is a mystery. Introduced microbes do not gel & merge! We take friendly bacteria & sure enough they can be found in the stool , stop & stool detection stops too. The amount of microbes we host is measured in pounds approx 4 pound for each one of us., yet a few visiting bugs taken on a lettuce leaf have the ability to overwhelm our bug partners & cause illness ,travellers diarrhoea !!! After a few days the bugs that were pathogenic now are no longer pathogenic its said we get used to the new bugs !! how we get used to them we don’t know. We need a healthy gut flora amongst other things for a fully functioning immune system , to metabolise metals. Autism is linked with a failure to metabolise metals. Therefore any action / condition that alters gut flora is potentially disastrous. As per Dr. Pasteur's dying words "The germ is nothing, the inner terrain is everything."Its not just bacterial antibiotics that have the potential to alter the balance of flora in the gut, Any drug that alters the PH levels in the stomach has the potential to promote the growth of inappropriate flora. It follows that antacids & the like must be used with caution! It all adds up to a nightmare situation fungal infections without doubt are the major cause of illness in the western world, the doctors that should be reacting [they can be cured] have their heads three feet down in the sand. Without doubt we are living in the medical dark ages.

[Lynno]

Thank you very much for your posting of December 04.  I found this forum while doing a search about motility disorder.  I have not been able to find page http://drcranton.com/CFIDS.htm#CFIDS%20Paper, which you referred to as your "rosetta stone".

Would it be possible to send me a link that does work or provide the info in some way.  I would really appreciate it.

TIA...

Lynno