Visceral Myopathy

My name is Zoe.I have been diagnosed with Chronic Visceral Myopathy. I am 35 years old. One whole lawyer of muscle, around my Small Colon has deteriorated & is no longer there. The last & only layer of muscle around my Small Colon is unable to work properly. It is trying to work double time for the muscle that has deteriorated & is now becoming paralyzed. Food is my enemy & in replacement for food... I drink Vivonex. I eat about three full meals per week! Though little food...I gain weight rapidly, because my digestion system has/is shutting down. My symtoms (symptoms) are persistant! The bloat & constipation is constant!Also, the bacterial overgrowth is a huge factor. In order to achieve any type of bowl movement, it takes me a hand full of laxatives before bed... for any relief!  The Doctor has put me on Zelnorm & Xifaxan, everyday...forever. I have come to grips with my reality! My questions are...What do I need to know to plan my future? Meaning, will I eventually die behind this incurable Mystery Disease? Sooner or later? Will I eventually live with a feeding tube inserted? How fast does this disease progress? I am only aware of one other person named Vonda, who posted her concerns on your sight in 98. She was 35 rears old at the time & was also diagnosed with Visceral Myopathy. Is she still alive today? What do I need to expect to prepare myself for any type of quality of life?  What is the known time frame after being diagnosed with this disease, before one becomes extremely ill? I was told by my Doctor that I am the classic text book case for Viseral Myopathy. Has anyone ever lived with this disease? Or, have they all died from Malnutrition & other complications? If my symtoms (symptoms) are rapidly getting worse & there is nothing  more the Doctor can do for me, how long do I have before I am not able to eat at all! I am prepared for anything & am a fighter! Knowing there is no cure for this disease, I have come to grips with my destiny. It would be great if someone/anyone can help me through their experiance with this. It is difficult chasing a ghost! Not being in control of my health, because there are no answers is extremeley frustrating! Not knowing...is the worst feeling!

[Kevin Pho, MD]

Visceral myopathy is a disease that falls under the disorders known as pseodo-intestinal obstruction.  This is a rare disease, and to be honest, I do not have much experience in treating it.  I would suggest a referral to a major academic medical center for further treatment and evaluation.

Treatment options would include rotating antibiotics in those who have bacteral overgrowth.  Cipro, doxycycline and Flagyl have all been commonly used.

Various pro-kinetic agents, like Cisapride, erythromycin, Reglan and octreotide can all be considered and have had varying success in small studies.

Finally there are procedures that may help.  This can include surgery to remove bowel with localized disease, or a gastrostomy tube - which small studies show some efficacy.

These options can be discussed with your personal physician or gastroenterologist.

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.

Kevin, M.D.
kevinmd_b

[vpparkerLittleRock,AR]

My son has just recently been diagnosed with CIP or Visceral Myopathy.  We are asking the exact same questions that you have listed here.  He is 13 years old and was originally diagnosed with Hirschsprung's Disease.  But now we know it was and is CIP/Visceral Myopathy all along.  He has a colostomy and has had one most of his and we've endured over 40 surgical procedures.  He keeps having episodes of cramping, nausea, sometimes vomiting, diarreha and sometime constipation (dry output from the stoma).  I'd like to talk to you more about this and share what info we have on the this condition.  My # is 501.772.6287  My name is VP Parker.  We live in Little Rock.  I'm most interested in the medicines that you are taking and why they've prescribed them.  Maybe together, we can gather info that will help you and my son.

[mom_grandma]

I was diagnosed with visceral myopathy in 1988 after 6 years of misdiagnosis and unanswered questions.  My Dr. referred me to Iowa City and finally had an answer.  I have tried all kinds of medication and had several surgeries.  Three years ago I had a feeding tube inserted because I couldn't eat without feeling sick, bloated and severe pain.  If you would like to email me at ***@**** I would be glad to give you more information and share stories.