As I'm sure you are aware, last week was World IBD Day. Today I wanted to share awareness of the huge range of symptoms and problems you can get with IBD. I never blog about things like my toilet habits- since I want to show that living with IBD is so much than that! In fact, since you are asking, I don't really have too many of the obvious crohn's symptoms like bleeding and weight-loss; yet it still is a massive part of my life. So here's 10 things that IBD causes you may not even know about....
My IBD causes...
1.Me to feel really tired. I have anemia at the moment but IBD patients can feel tired due to a variety of things: missing out on key nutrients, Vitamin B12 deficiency or side effects from medications.
2. Doctors to take other of my symptoms less seriously: Even if it's completely unrelated, doctors will often make a connection to my IBD just to explain how I'm feeling. I hear the phrase 'that's life with a chronic condition' on auto-repeat; making me think that even my leg fell off my doctors would somehow link it to my pesky immune system.
3. Me to have more injections than I ever thought possible. I remember when I used to be scared having vaccines when I went on holiday. Now I've completely lost count of the number of needles I get: from weekly blood monitoring, to steroid injections and biologic treatments.
4. Me to worry about taking long trips. I have to plan for every possibility with this disease: extra food? Check. medication in hand luggage and in suitcase? Check. Printed list of nearest hospital in case I suddenly go from remission to a flare-up by the time I land? Check. You don't even want to see the size of my hand luggage.
5. Me to get weird allergic reactions. It may be my IBD or my medication but I've had some really strange allergic reactions since diagnosis: I once woke up with Angelina Jolie lips for no reason and was hospitalised when traveling as a mosquito bite caused my whole leg to swell.
6.Bad anxiety I mentioned in a previous blog about why I think more should be done to help support patients with anxiety IBD. I think almost every patient has this at one point but it is rarely mentioned as a symptom. Yet there's a natural link: both in the fact of living with an unpredictable, long-term disease and also because many vitamins that patients are deficient in link to anxiety.
7. Me to struggle with exercise I am getting much more in to fitness and in fact I have a blog posts in the works where I chronicle my return to exercise after surgery. However, I've found exercising with IBD difficult: sweating can irritate my wounds; I get dehydrated much more easily; intensive cardio can set off stomach issues and it generally feels more difficult.
8. Me to plan everything I eat. I don't want to set off a debate on diet and IBD but for me it's the biggest trigger of my symptoms. Off the list is high insoluble fibre, too much red meat, gluten, dairy and alcohol. Or as I like to term it: the everything you used to eat but now can't diet. I actually really enjoy my new diet and blogging about (hint: recipe posts for what I can eat here!) but it is bloody hard to stick to!
9. Complete wardrobe overhauls. I appreciate this may be a shallow point, since many people blog about much more serious issues of IBD but I actually do find it difficult to wear certain clothes. 5 months after a fistula surgery, I find it difficult to wear tight fitted clothing and things like tights- as I just find they really irritate my skin. As a fashion blogger many years ago, I do sometimes feel a pang of regret of the bodycon dresses and high heels of my former life. That's not to say many IBD patients don't dress perfectly normal but it does have a massive impact on your body image- I wrote about IBD and body image here. It is really hard to feel confident in your own skin at times.
10. My body to do really strange things that I have no idea about. I had to add this last one as I was typing this, my stomach started churning and almost did a Mexican wave through my digestive system. I literally have no idea what that was but I froze for a second and did wonder if I was going to get a bad pain. It seems to have gone now- leaving me confused whether that was IBD or something completely different.
So that's what living with IBD is like. It can impact our bodies, our minds and even our wardrobes. I would love it if you could share this post and talk about the symptoms of IBD that you keep hidden-lets show that this disease is so much more than toilet trips!
Jenna Farmer blogs about living with IBD over at www.abalancedbelly.co.uk