- Joined
- Apr 28, 2013
- Messages
- 25
I have been asked to write a thread giving parents some advice about living with a child who suffers from IBD or a related illness.
I was diagnosed with Crohn's Disease age 7 in 1995. I am now a well adjusted 25 year old, with a university degree, a job and an active social life.
But it has not been without it's hurdles. I do not wish to scare anyone but as you probably already know Crohn's is going to throw you a curve ball every time you think you have won the round. So, to start with I want to tell you my medical background and then I can tell you what I wish my parents had known.
At age 7, I fell unconscious on my mothers knee. My large bowel had become toxic and was poisoning my whole body. I was rushed to hospital and was given an emergency illeostomy which I still have to this day. I had a few seizures and lost a lot of my memory. One of my earliest memories is my mum giving me tablets and when I asked her what they were for she said, 'they are to make your brain better.'
At age 14 I spent almost a whole year throwing up everything I ate until finally I was referred to a new doctor and had a scan which revealed 3 strictures in my small intestine. It was completely blocked. So after 2 months on an elemental diet (given through a feeding tube) I had my second major surgery to re-section my intestine.
At age 22 I had my rectal stump removed, after so many years of being an in-active tissue, it was removed to prevent the possibility of the cells turning cancerous.
Today, nearing my 26 birthday I am now faced with a fistula. I have a passage way from my small intestine leading into my uterus. I am currently on infliximab but have been told I will need further surgery and a possible hysterectomy.
So this is what I wish my mum had known.
1: You need to be informed. Until a few months ago I didn't even know what a fistula was. Both myself and my mum have kept our heads buried firmly in the sand and maybe if we/i had known more I would have taken better care of myself and also been able to discuss different treatments with the doctors. Make it your business to know all the complications that can occur and also what all the new research is saying.
2: Your child is not defined by his/her illness. Sometimes I felt like every second word out of my mums mouth was Crohns. She set a lot of limitations for me, and held me back from doing things like taking some exams at school. I remember wanting to scream at her 'there is nothing wrong with my brain.' Obviously things are going to be a little harder. But never ever tell your child they can't do something because of their illness. The tight strings placed on me made me quite rebellious in my teenage years, I got involved in things I shouldn't have but I just wanted the freedom of my own life.
3: Don't be afraid to question doctors, ask for a second opinion or just take some time to way up the options. I'm a nightmare for doctors these days, I want to know everything and I let them know that I don't want to listen to medical talk. Make them tell you in plain English/Spanish/or whatever language you speak. You are the one that will have to live with their decisions.
Stay positive and good luck.
I was diagnosed with Crohn's Disease age 7 in 1995. I am now a well adjusted 25 year old, with a university degree, a job and an active social life.
But it has not been without it's hurdles. I do not wish to scare anyone but as you probably already know Crohn's is going to throw you a curve ball every time you think you have won the round. So, to start with I want to tell you my medical background and then I can tell you what I wish my parents had known.
At age 7, I fell unconscious on my mothers knee. My large bowel had become toxic and was poisoning my whole body. I was rushed to hospital and was given an emergency illeostomy which I still have to this day. I had a few seizures and lost a lot of my memory. One of my earliest memories is my mum giving me tablets and when I asked her what they were for she said, 'they are to make your brain better.'
At age 14 I spent almost a whole year throwing up everything I ate until finally I was referred to a new doctor and had a scan which revealed 3 strictures in my small intestine. It was completely blocked. So after 2 months on an elemental diet (given through a feeding tube) I had my second major surgery to re-section my intestine.
At age 22 I had my rectal stump removed, after so many years of being an in-active tissue, it was removed to prevent the possibility of the cells turning cancerous.
Today, nearing my 26 birthday I am now faced with a fistula. I have a passage way from my small intestine leading into my uterus. I am currently on infliximab but have been told I will need further surgery and a possible hysterectomy.
So this is what I wish my mum had known.
1: You need to be informed. Until a few months ago I didn't even know what a fistula was. Both myself and my mum have kept our heads buried firmly in the sand and maybe if we/i had known more I would have taken better care of myself and also been able to discuss different treatments with the doctors. Make it your business to know all the complications that can occur and also what all the new research is saying.
2: Your child is not defined by his/her illness. Sometimes I felt like every second word out of my mums mouth was Crohns. She set a lot of limitations for me, and held me back from doing things like taking some exams at school. I remember wanting to scream at her 'there is nothing wrong with my brain.' Obviously things are going to be a little harder. But never ever tell your child they can't do something because of their illness. The tight strings placed on me made me quite rebellious in my teenage years, I got involved in things I shouldn't have but I just wanted the freedom of my own life.
3: Don't be afraid to question doctors, ask for a second opinion or just take some time to way up the options. I'm a nightmare for doctors these days, I want to know everything and I let them know that I don't want to listen to medical talk. Make them tell you in plain English/Spanish/or whatever language you speak. You are the one that will have to live with their decisions.
Stay positive and good luck.
