Supporting your child with Crohn's or Colitis: My lovely Mum's perspective

Supporting your child with Crohn's or Colitis: My lovely Mum's perspective


Hello Comfizz readers!

With it being Mothering Sunday this month, I wanted to do a slightly different post. I asked my lovely Mum to write something on her perspective with having a child with Crohn's Disease and she kindly agreed.

My Mum & I

Mum has been a massive support to me all my life with whatever comes my way. I remember many a time feeling so bad that I was putting my family and loved ones through having to watch someone they love suffer & be in pain continuously. Mum, like my Dad & brother, never once complained.

Despite struggling with anxiety when I was a young child, she always found ways to be there for me. She would ensure I had hospital bears to keep me company on my journey if there were times she couldn't make it & when Dad was working & couldn't get to me. As well as Mum, my Dad has also been such a support to me right from the beginning. He has worked himself tirelessly between hospital and a full time job and looking after a family to be there for me. If it wasn't for my parents' decision to take me to A & E before my major surgery in 2011, I wouldn't be here.

I struggled a lot in hospital controlling my bowels out of having IBD mixed with my nerves and would have continuous accidents where I couldn't even have attempted to get to the toilet. I would sit and rock myself backwards and forwards, squeezing my legs and bum cheeks together trying to hold everything in, which made my stomach pain ten times worse. 

Mum's love has always been deeply felt by me no matter what she has been dealing with herself. Mum has taken me to countless hospital visits as I went through my teenage years with Crohn's and provided a shoulder to cry on, a hand to hold, the most random & hilarious giggles to keep me entertained on my long infusion days & often slept in a chair to be by my bedside both at home & in hospital when I would wake up in agony & sometimes panicking, especially after my major surgery to give me my permanent ileostomy in 2011.

I have always felt so much more than a daughter to Mum. I can describe our relationship for me as feeling like her daughter & best friend rolled into one. There are very few people who will ever connect with me & have ever connected with me on the same level emotionally (& in the most silly, hyper ways) as my Mum.

From encouraging me to try to eat, ensuring I'm warm, giving me her arm to hold on trips out when I was scared I'd pass out, wheeling around my drip stand as she walked by my side, me being sick on her & her cleaning up endless poop, her showering me & lifting me in & out of the bath & her love carrying me through post-surgery when I asked to die, it's safe to say I wouldn't be who I am today without my Mum. She threw herself into a life, where her daughter has a cruel disease then had a permanent stoma formed, so selflessly and has helped me change my stoma bags, dress my surgical wounds, widen my stoma at home when it's become narrow and has always been so eager to learn about my daily life with a stoma and how she can make it easier for me. Hospital trips have been made so much easier even in recent years where I haven't had the energy to drive myself there and back. She has taken me and looked after me without any hesitation.

Here is a glimpse into Mum's perspective... You might want a tissue...It had me crying!

IBD & Me: Mum's perspective

Seeing your child ill, whatever age, is never easy.

As a mother, I felt I'd failed Amy, It was my fault she was born with this illness.

Amy had frequent problems which intensified as she started Junior School.

She had school work sent home many times as she was so weak she couldn't attend her classes.

After many visits to the Doctor, she was referred to a children's clinic at hospital.

Children's clinic visits were once a month, sometimes more and she was admitted to the children's ward for procedures. These didn't tell us the whole story.

This carried on to just before Amy was 18 and then she was transferred to the adult clinic.

Amy was admitted for observations and procedures, I slept in a chair at the hospital, I didn't want to leave her all alone. As she slept, I'd look at her and think "I wish it was me going through all this pain and not her". I just wanted her to be better. Everything she went through was so upsetting but I knew I had so stay strong for her and not let her see me crying. I remember crying in the shower so many times. The hardest visit was when Amy's consultant told her she had one of the worst cases he had seen so far in his career.

A & E visits followed, surgery was set up, she was so weak so they cancelled. Again A & E visits and at the last visit prior to surgery we didn't know how close Amy would come to losing her life.

As surgery went ahead we waited at the hospital, hours passed and we didn't see her.

We were worried we were going to lose her and what life would be like without her.

After surgery, we were informed she had a tumour the size of a baby's head and had it been a couple of days later she wouldn't have survived.

We were absolutely devastated. I'd had experience of Ulcerative Colitis as my brother Graham had it and he had a stoma. Realising what life he had now compared to what he had pre stoma I was reassured Amy would slowly get better and have a better life as long as there were no complications.

On the hospital ward, Amy repeated "I want to die". What could we do?  We felt helpless.

We kept trying to reassure her she would get better but it seemed a long way off. Graham visited and Amy talked to him about his stoma, how he managed with it and they shared tips. None of us had this illness, it was difficult to imagine, so I'll be forever grateful to him for chatting to Amy when he could.

We visited every day after school (Her Dad, her younger brother Tom and I). Tom insisted we waited so he could go every day and hold his sister's hand.

Amy got her discharge date, the day before she started bleeding, so that was put back.

When we got Amy home I helped her in and out of the bath, washed her, changed her stoma bag with her, gave her injections and slept on a sofa in her bedroom for several nights so I could check she was alright.

As life got back to some sort of normality I was astounded by Amy's strength of character and how she coped with "Stacey Stoma" as she is now called. Stacey wasn't only vital for Amy I was thankful for her as she has given our daughter her life back.

When Amy reached her target weight I was elated with her. Her Dad, Tom and I went to many hospital appointments with her. Every time I was proud of her beyond words.

Personally, I'm extremely proud of Amy. As there wasn't any help available for her when she started with this illness I'm also amazed at how selfless she is in helping others too.

She has made many true friends through having Stacey and for that I'm happy too.

Thank you to my lovely Mum for being so open about her experience & writing for Comfizz - I'm sure it'll be one that a lot of parents can sadly relate to. I'd also like to say a huge 'thank you' to my younger brother for all his support & expert wheelchair driving skills in hospital!

Until next time,

 

 

 


2 comments


  • Jennifer Shaw

    Bless you both, your mum and yourself ❤️ What a journey you have had and the love and support from your mum is so wonderful, I would be the same. It’s heartbreaking to see your children ill and suffering. Amy, you were my inspiration in 2013 before I underwent bowel surgery and I’ll always remember and admire the strength you have and how your words of your experience helps others.


  • Angie Owst

    Well Amy, what can I say!! You weren’t wrong about the tissues!! Even though you have outlined the story, had no real idea of the journey up to and through those darkest of times. Humans are an incredible species, to go through so much pain, physically and mentally and yet, with the support of those closest to us, we can get through them and become so much stronger for it. I have always been in awe of your courage and determination to power through , with your ’ got this’ motto and enjoying life to the full. I thank the Lord that Ben came into your life to add that extra support and above all , to enrich your life with his strength when yours takes a knock.
    Your Mum, Dad and brother are truly inspirational and must be super proud of all your achievements, particularly as your Mum says, supporting others who are going through similar situations .
    Never change Amy, you are one of a kind . Xxx


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