Chronic Childhood Pain and Illness

I was born with Alagille Syndrome in 1985.

Added to multiple massive organ surgeries, all of which have felt like molestation, I have had continuous belly pain since I was very small. A couple of years ago, they became so bad that I had several episodes where both my stomach and back hurt and I couldn't even lie down or sleep. I talked to my doctor about this, and he insisted that it was lactose and sucrose intolerance. That made no sense to me, because I observed no difference in the pain between days when I consumed dairy or sugars, and days when I didn't. Instead of considering this information, he became offended, and insisted again that it was as he said. I eventually decided to try and believe him, and a month or so later I was hospitalized, and found that scar tissue from all those multiple surgeries had built up in my intestines and caused terrible blockage. The scar tissue was removed, but mere days later and I could have had my intestines removed. All because a doctor didn't want to be questioned.

I still have some belly trouble, even though it's nothing like before, but I'd still like to try and resolve what's left. It's still a real hindrance each day. I tried seeing a new doctor, who seemed better at first, but last time said if she tries to resolve what is left over, it could go wrong and I might have to spend the rest of my life in the hospital.

To someone traumatized by hospitals since birth as I have been, that possibility is worse than death. I wonder how I should go about seeking to resolve what belly pains remain (found to be likely due to a stressed-out intestine)

I also want to ask something, because I don't see a forum for Chronic Illness. Does anyone ever get irritated at the way sick children are portrayed in shows and movies, as being accepting of their illness(es) and completely trusting of doctors and nurses? For me, a hospital has always been a prison, full of abuse, neglect, and molestation, and I have had almost nothing but bad experiences with doctors. I have always hated my illness, and tried hard to fight against it. Has anyone else felt the same?

Welcome Nate to the CP forum and HW. It sounds as if you have had a horrific experience and unfortunately years ago kids were treated as little adults in a clinical setting. I can just imagine your trauma from such a horrible illness. However finally the medical community has figured out that children are traumatized by the invasion into their little bodies and lives and yes it can feel as though it's a form of molestation going against every thing parents teach our children about strangers touching you and allowing anything that makes you uncomfortable to be ok. Each and every lesson we as parents teach to protect them suddenly has to be thrown out in the hospital and clinic setting leaving children who can't understand why its ok some of the time but not others to be invaded and touched by strangers and instilling mistrust of anything we as parents teach,in other words we lied to them or at the very least mislead them. Great strides are being made these days in some of the top notch children's hospital and we have a new one here in Florida thats awesome and completely designed for and geared towards helping children who have long-term issues be comfortable and yet treated adequately with the least amount of trauma and invasion into their lives. Here in this hospital children don't have to adapt to a adult setting but rather the adults who are there must adapt to the childs. They use only the most new and updated technology to diagnose and treat children,they go with minimalist invasion whenever possible and parents are not barred or prevented from any place their child is even surgery!!

Too bad it took the field so long to figure out how traumatic these experiences were.

As others have suggested IBS and Crohns even the UC forum has some folks who are far more experienced with stomach issues than we are,not trying to run you off but hoping that you can find some resolve and answers.