For day 5 of Crohn’s and Colitis awareness week I asked my mam if she would write a little bit on what it was like for her being a parent of a child with IBD. I wanted people who are also parents of children with IBD to know they aren’t alone and those of us who are the child to have an insight what it was like for our parents. At first she found it really hard as so much of it made her angry and upset thinking about it, she seems to focus on my stay in Leeds General Infirmary which was probably when I was at my worst and surgery was first mentioned which I declined – funny how you remember things once you read someone else’s account! She remembers things differently to me and considering I not only blocked most of it out but I was on a lot of pain medication so it’s hazy anyway it isn’t surprising.
A parents journey with a daughter with Inflammatory Bowel Disease
There was anger, tears and yes laughter. My daughter from the age of twelve became increasingly ill after her first year at secondary school due to been bullied.
I made an appointment with the doctor and she was referred straight away to the Friarage hospital under the surgical consultant. That’s when we were told she had ulcerative colitis. Then the fun and game’s started with taking her medication. I know from my own experience of taking pills for my diabetes that it isn’t the most pleasant of things, I have always had trouble swallowing pills that the only way I can take them is by practical dancing on the spot. No parent wants their child to be ill never mind taking medication for the rest of their life and at the age of twelve. Well if I wasn’t stood over her like a horrible monster Steph wouldn’t take them. In which I can totally understand.
I tried to make light of her illness; especially when Steph was admitted to Leeds General infirmary. We were there for two weeks and in that time we laughed so much that we were in the right place if our heads had fallen off. While there she was told that they would be putting a feeding tube in her vein via her arm up to her heart. This was to give her digestive tract a rest. I looked after the toilet side and would take the bedpan away clean it then bring it back.
Well every time she used the commode for a poo it stank so much that I had to put a pair of knickers to cover my face due to the smell and spray the room with dewberry body spray. I don’t know what the staff thought of us laughing our head’s off in our room but to this day if I get a whiff of that body spray it makes me sick .
From the beginning of Stephanie`s illness to where she is now having a stoma, I had a few scares to the point I thought she was going to die, that my beautiful first born was going to be taken away from me forever. The procedure for putting the feeding tube in she had to be taken to theatre and have anaesthetic for the second time.
Everything went well up until they had to wake her up, I was waiting outside the theatre room and was called in to help wake her up. It felt like forever trying to get her to open her eyes in which was probably only five to ten minutes.
I’d like to finish off by saying how proud I am of my daughter of everything thing she has endured in her life; because if it was me I don’t think I could have coped.
I just want to take this opportunity to thank both of my parents for everything they did to help me whilst I was really ill and helping me with my children whilst I have been an inpatient and after surgery as an adult so 00Steve could try to go to work and keep a roof over our heads. I haven’t always been the best patient and I took being in pain out on people when I was frustrated and being horrific at taking tablets. I know you would do anything for your children but you never expect to have seriously ill children. If you missed yesterdays post on dating with IBD please click here.