I have Advanced Visceral Myopathy Please Help

Hello , I am a 45 year old mother of 4 with a new diagnisis of Visceral Myopathy, I understand the process and what it is doing to my body. I need help with finding someone else who has this and knows how to live with the pain from it. Mine is continual and has made me very housebound. So far my stomach is paralized ,  my small bowel , colon, large bowel, anal canals, and my bladder are affected. I do not know what to expect next. oh also my bile duct is involved, Does anyone have any information they can share?


This discussion is related to HFHSMD-ym-.....Please Read-Vicseral Myopathy.

[patient915]

Welcome to the gastroenterology community!  I'm sorry but I don't know much about this condition.  I hope someone else will come along to answer your question more detailed.  However, I would recommend that with a rare disease that you get a second opinion by another doctor.  What symptoms are you having?

[crazyfoodhurts]

I have extreme constipation and am on several perscription meds just to induce bowel movements, I have gastroparesis where my stomach has become paralized, It works on about 4 % , my colon and small colon have colonic inertia- slow transti time where the food can not make it out without meds. I have no reflex left in in anal rectum to be able to recognize or push anything out and I have a rectocele(bulge into my vagina, from years of pushing so hard,)and cystocele(bulge into the anal canal from the vaganal canal from the bladder)My bladder is now becomming enlarged due to the way this disease runs. My esophagus has not begun too much to be effected.
The worst thing is I am in constant pain in the abdomen it is always enlarged as if I were pregnant and I get pain though out the inside as if I had labor pains in the colon. I can not walk very far and since I can not digest anything I am trapped  at a very unhealthly weight. I have cramps that come on from standing after 10 or 20 minutes to my complete abdomen.  
I have the best of Doctors here in California, at UCI but only 2 patients have this disease here a young boy and myself. I need to find out more information and how to survive this thing,
I am rasing the last of my children who is 8 alone and I am very scarred.

[patient915]

I have gastroparesis and chronic intestinal pseudobstruction so I know what you are going through.  I am currently fed through a J tube and I have a PICC line.  Are you able to get enough nutrients/calories in?