This month has been absolutely CRAZY. For those that don’t know, Adam and I are finally getting married THIS SUNDAY! Since we got engaged in March 2018, we've adapted to me having life changing surgery and planned 4 weddings. We can’t quite believe the time has finally come for us to say I do.
Seeing as the last few weeks have been full of wedding prep and there has been no time for writing, my June blog brings something a little different. It’s a project by my mum that she presented for her work years ago. She chose to talk about what it was like raising a daughter with Crohn’s disease.
Mum flew the flag for me in raising awareness of this horrible disease way before I found my voice to do the same. So, over to mum...
Living with Crohn's disease
My daughter was almost 9 years of age when she was diagnosed with oral Crohn's disease. Her dentist first noticed the problem with her gums and thought she was secretly sucking extra strong mints which were causing water blisters and swelling inside her mouth. Her lips would swell up also as if she had undergone some kind of cosmetic surgery. This caused problems at school and she was subject to bullying and name calling. But she's a tough little cookie and managed to get through those times.
She was quite an attraction at the hospital though. When she went for her check ups, of which she had many, she would often have groups of student doctors and consultants peering into her mouth to take a look at her condition, as many had never seen oral Crohn's before. As we got used to her condition, we found that certain foods would react on her mouth, sometimes within minutes and sometimes a few hours. The main offenders were Coca Cola, McDonalds foods, highly spiced and highly coloured foods.
Crohn's disease is a chronic condition that causes inflammation of the lining of the digestive system. Inflammation usually occurs in the ileum (last section of the small intestine) or the colon (large intestine). However, inflammation can occur anywhere in the digestive system from the mouth to the back passage.
Over time the inflammation caused by Crohn's can damage sections of the digestive system, causing additional complications such as narrowing of the colon. Symptoms include diarrhoea, weight loss, abdominal pain and fatigue. The cause is unknown. Research suggests that a combination of environmental and genetic factors is responsible for the onset of Crohn's disease.
Crohn's is a rare condition. For every 100,000 people there will be 7 new cases diagnosed each year. There are currently 90,000 people living with Crohn's disease. Most cases develop in the 16 to 30 age group but it can affect people of all ages- just like my daughter.
Rhian had to undergo regular hospital visits. She's had to give blood and had the magic eye, barium meals, x-rays and has been prescribed many types of medication. The consultant tried her on a special liquid diet once. She could only have the 'milkshake' plus boiled sweets, squash and lollies. Carrie Grant, the vocal coach, has Crohn's and uses this treatment. She was very supportive to Rhian that particular week.
It was hard for me also. I didn't feel I could eat in front of her but eventually they took her off it as she was losing too much weight. At one point she lost 2 stone in a matter of weeks. She would be up in the night 6 or 7 times to go to the loo. It always seems to flare up when exams are looming, when stress levels were high. So it has been difficult as she would be worn out when it was time to get up. Fortunately mum's taxi was there to get her to school. She was determined to do well and with only 55% attendance, she still got 3 A's and 1 B at A level!
She is studying law at Cardiff University now and has been put on a new programme that seems to prove successful for young girls. She attends the Heath Hospital in Cardiff every 6 to 8 weeks for a 2 hour infusion of a new therapy known as biologics. This targets the particular chemicals in the inflammation process.
She has gained weight! Which she is not too happy about (everyone else is!) and she has far higher energy levels.
The outlook for Crohn's disease is highly variable. People can have long periods of remission lasting months or years where they have no or very mild symptoms, followed by periods where symptoms "flare up". There is currently no cure for Crohn's disease. However, medication is available to treat symptoms and prevent them from returning.
We hope that the Infliximab infusions Rhian is having at present will do just that!
I am so pleased that mum held onto these words. It is only when you get older that you realise everything your parents go through to protect you. To make you better. Even when there is no cure. From stopping herself from eating because I can't. To making herself late for work so she can get me to school. To spending hours researching a cure that didn't exist. And so so much more. I don’t know where I would be today without her. My past and my future would be nowhere near as bright.
Thank you mum, for being my guiding light ❤️
Love me
& My Friend Wendy.
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