Climbing for Crohn's
WHY
First an Introduction
My name is Jess and I was diagnosed with Crohn's disease in 2009. I also have the lovely little extra of fistula, which have made my treatment a little more complicated. Now that I have finally reached a reasonable state of health, and my condition is being managed with the help of a fantastic medical team, I want to raise awareness of these conditions and raise money for a charity very close to my heart.
Crohn's Disease is a chronic disease and, by definition, has no cure. It has many symptoms, the main ones being digestion issues, intolerances, fatigue, abscesses, blood loss, abdominal tenderness and cramps, painful and swollen joints and weight loss. I had never heard of the disease till I was diagnosed, though around 90,000 people in the UK live with some variation of it. It effects mostly women, though the reasons why are unknown. Ulcerative Colitis is another form of Inflammatory bowel disease (IBD) with similar symptoms.
As mentioned I have the added complication of fistula. As a teenage girl/ young woman, I find this particularly difficult. There is limited support for people in this situation and I believe support is dearly needed.
1. http://www.nhs.uk/Conditions/Crohns-disease/Pages/Introduction.aspx
HOW
The Challenge
To raise money for Crohn's and Colitis UK and to raise awareness for IBD and related complications I am going to complete The National Three Peaks
Challenge on the 14th September (It was the 3rd August before my surgery).
This involves climbing Ben Nevis (Scotland, 1344m), Scafell Pike (England, 978m) and Snowdon (Wales, 1085m) within 24 hours (or just over depending on traffic, and personal ability).
At 12pm I would start Ben Nevis, aiming to finish by 5pm. I would then arrive at, and start climbing, Scafell Pike at 11pm. I should complete my descent from Scafell at 3AM (!) then travel to Snowdon. I'd start climbing Snowdon at 8am and aim to finish by 12pm, completing the challenge. This is going to hurt!
I have chosen this challenge as I have mountain climbed from a young age so it plays on my strengths, yet I am quite unfit so it will be grueling and will take a great amount of determination. For the latter reasons I believe this is a task well worthy of sponsorship, both for the cause and because I will have to work for it.
Below is my official 3 Peaks registered page
My Experience
Many times I was misdiagnosed before finding out I had Crohn's, including stomach ulcers, arthritis, and a few other serious conditions. I finally found out at 18 years old, and everything changed.
Over the past 4 years, I have had 9 operations to treat the fistula. I have been having an IV drip of an TNF inhibitor called Remicade/Infliximab every 6 weeks to keep my symptoms at bay, though recently they haven't been as efficient as they are supposed to be. In fact, it look's like I may even be having an allergic reaction to Infliximab. I'm currently transferring to a new method of treatment, which isn't an easy process. I am first going to be put on Humira, a TNF inhibitor based on a human protein (where as Infliximab is based on a mouse protein), and an immunosuppressant called Azothioprine. I will be able to administer the Humira myself, if it works, which is another advantage. These drugs will treat my fistula. On the 10th June I was informed I needed surgery. On the 25th I will be having a resection, which involves the bad bit of intestine being cut out. I will have around 4 hours of surgery, be in hospital a week and then have 4 weeks of "taking it easy". This is why the date of my walk was moved form the 3rd August until the 14th September.
My medical team are quite positive that this will work for me, ensuring I am all fit and ready in time for the challenge.
The food intolarancies I live with include most forms of starch and gluten. That means I can't eat rice, pasta, anything with flour in, potatoes. The biggest problems are yet to come, though with luck they might not. Some people end up with colostomy bags when their disease progresses. With my fistula I will always be on medication, which may have an effect on future life decisions (i.e. the drugs aren't suitable for pregnancy).
The physical symptoms aren't pleasant, but the emotional were harder to cope with. It hit my self-confidence hard at the beginning. I didn't know of anyone else with the condition, and had no access to support groups. The fistula in particular, being quite nasty at the start, made me feel hideous. My friends and family tried to help me, but really, I needed to know it wasn't strange, things could get better, and I wasn't some kind of circus freak. Teenage girls aren't the most confident creatures at the best of times, but I feel no matter your gender, age or anything else; more support is needed. Only recently have I come to terms with it all, and I think a part of that is talking to people in the similar situation.
My parents were also affected. Maybe it always feels like it’s harder on the people you care about most. They have been amazing throughout. They are there for every operation, have been a guiding hand through all decisions I couldn't make alone and even knitted me a few woolly hats along the way. I can never thank them enough. There are many challenges yet to face; some harder than the ones I already have, but I now know I can meet them head on. I have many people to thank for that.
This is obviously a greatly abridged version of events and I'm not going to say the experience has been easy, but I am one of the lucky ones. I have had a diagnosis and receive all the available treatment, where many more unfortunate do not. Please donate to help present and future patients.
