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.

[ManagingbutStillSuffering]

A related discussion, How many cases of slow motility might actually be Hirschsprung's Disease? was started.

[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

[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

[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

[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.