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My 32 year old son is in trouble. His system is shutting down.
32 years old has had both bladder and bowel issues since a child. Was never diagnosed properly. Got a colostomy 3 years age. Nothing is working now, no blockage, intestines just stopped. The doctors in Alberta Canada are stumped. They suspect possible nerve damage from a childhood abnormality? I don’t understand all this stuff. He lost 49 pounds in a month and a half. In and out of hospital. He is a hard working young man, with 2 young daughters and a supportive wife. They have requested genetic testing from both myself and his father. We need advice and help. We are scared time is running out.
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I’m sorry for what your son is going through. Have his bowels completely stopped or are they just really really really slow? Is he passing gas? When listening to his abdomen with a stethoscope, are there any bowel sounds whatsoever? I would first determine if he has any bowel sounds whatsoever. If he does, that may indicate that his bowels are functioning, but at a severely decreased level. There’s a medication called Reglan that speeds up motility… I don’t know if that is a good option for him. I would ask his doctors. Has he had any other diagnostic tests… such as a food transit study?
Sorry... it's way out of my knowledge, but as a mom who has had a very ill child many years ago, I send you all my good wishes.
@marnzee, you must feel so desperate to help your son. I echo some of the questions that @ravna asked to understand a bit more.
Have his bowels completely stopped or are they just really really really slow? Is he passing gas?
What has his GI specialist suggested?
This is absolutely scary. I suffered the same way. Because I'm in the medical field I researched a lot on my own. You said he has a colonoscopy. I his colon still in place? I had a total colectomy. My colon was ischemic for 12 years. It had adhesions that attached to 4 different organs including my diaphragm and I had breathing issues for 10 years! Lots of extreme pain and not being able to breathe didn't help. I had spoken to a surgeon and was scheduled for a total colectomy with ileorectal anastomosis. 4 days before the surgery, I was informed that the Dr decided to do an 1 1/2 hour surgery instead which would have changed it to your sons surgery. I was a mess! What am I supposed to do with that when I knew my colon needed to be removed because of colonic inertia, ischemic colitis,stercoral colitis and had been told to suck it up? I went to another surgeon. Thank God I did! My colon was taking oxygen from my kidneys and would shut them down. My bladder was paralyzed and I was self cathing. It doesn't work to leave the damaged organ in. Do you trust his doctors to show them this? The surgery gave me back my breathing after 10 years. The only other testing I asked them to do in 2016 was for Hirschprung disease which is problems with nerves from birth. This test can't be done at this point with your son. My heart goes out to you. I hope I gave you good information
Please let me know how it goes. I am willing to talk to your surgeons or give my surgeon's name and number. I'm sure Dr. Girard wouldn't mind. He's all about getting people out of pain.https://youtu.be/eeJTXYtB81g