Thursday, 19 May 2016

World IBD Day: My thoughts.

Today is World IBD Day, a day dedicated to heightening awareness, raising money & ridding the stigma associated with IBD (Inflammatory Bowel Disease).

Every 30 minutes someone in the UK is diagnosed with Crohn's Disease or Ulcerative Colitis, 300,000 people in the UK are currently living with the IBD; that is 1 in every 210 people living with a life-long, incurable, unpredictable and life changing disease. These are pretty staggering figures for a group of diseases with very little coverage, knowledge or awareness. This generally comes down to the fact that it's an 'embarrassing' and largely hidden disease, people are scared to talk about it for fear of others reaction.
Just a few months ago BBC South Today asked views to 'look away now if you're eating your dinner' before a feature including ostomy bags. No graphic imagery was shown, this warning was cast at the mention of the subject. The Archers on Radio 4 also has a running story line where a particularly nasty character has been left with an ostomy. It is mentioned nearly every week, each time with a tone of negativity, horror or disgust. Those following & commenting on Twitter, actively show their pleasure in seeing such an awful man 'getting what he deserves' in the form of a colostomy. I am sure other medical topics such as cancer, stroke, limb amputation or MS would never be used in such a way, so why Ostomy bags?
This kind of public stance, only compounds many peoples incorrect and ignorant perception of those living with IBD or bags.

Of course, it isn't all awful. IBD and Ostomy's are being discussed much more than they ever used to be, and I believe it is all generally going in the right direction to both raising awareness and finding a cure. However, a huge amount more is still left to be done. Awareness needs to be generated, sufferers should not be made to feel isolated, embarrassed or frightened, stigma needs to removed, IBD should no longer be a taboo subject.

This past year my bowel has largely been on it's best behaviour. I am now nearing 3 years of living with Margaret, my ileostomy, and symptoms have settled more than I could have ever imagined. My quality of life has been improved immeasurably and I've grown to accept the little pouch attached to my tummy. Of course, I have my down moments but these are much fewer than they ever used to be. So whilst my bowel symptoms have been on the up, I have had to deal with a rather nasty side of Crohn's disease, I barely knew existed. Being diagnosed with Axial Enteropathic Arthritis has not been easy and has annoyingly gotten in the way of lots of things in the past 12 months. I won't bore you again with the (very) long story, you can always read back on the last few posts for that, but it certainly hasn't been smooth sailing in the old knee department. Fatigue is also something that effects my life every day and anxiety likes to rear it's ugly head too. It hasn't been the worst year for having Crohn's but it's certainly not been the easiest.

Photo credit @spoiltbytes

I've often thought, if I could snap my fingers, would I get rid of having Crohn's Disease? And of course, I would, it would be great not to have to deal with it on a daily basis. But in many ways, I can't imagine my life without it. Aside from being completely used to the daily medication, giving myself injections, having blood tests & Dr's appointments every few months & dealing with the constantly changing symptoms. It has also, without a doubt, changed me as a person and I really don't know what I would be like or how my life would be, had I never been diagnosed.
IBD has made me strong and resilient, I have learnt to let go of the minor, insignificant 'small stuff' that used to bother me and to not let other people and their actions get me down. I'm much more aware of who and what matters & massively appreciate the amazing people around me and the times when I'm able to live life normally, I try not too take these things for granted. IBD has made me fiercely determined; to succeed and to do everything I want to do. When life knocks me down, I've learnt to bounce right back up again. All of these traits and skills I've developed largely from having the disease. Crohn's has taken a lot away and made life pretty damn hard but it has given me a lot too.

So here is to another year of IBD. Talking about it, raising awareness and hopefully getting one step closer to finding a cure.

Happy IBD Day guys!

Friday, 13 May 2016

Never stretching again.

Hi everyone,

How are we all doing?

As you know last year I found out my flexible joints weren't just a party trick but a condition called Joint Hyper Mobility Syndrome. Although this comes in handy when doing the limbo, it can also make life pretty annoying. I have recently found it near impossible to stretch off my muscles, especially in my legs. They ache all the time & my ligaments and joints just keep on bending when I try to stretch them off. A few weeks ago, I decided enough was enough and I had a real good stretch. I tried to be careful as I'm super aware of my naughty knees and their need to swell up when I do anything other than a gentle stroll, but I just couldn't help myself.

Sure enough, the following morning my left knee started to give me jip. The arthritis just jumps on the weak joint and causes havoc. I spent two days trying to walk it off, resting it when I could and basically ignoring the problem until I had no choice but to give in. The brace went on, ice & hot water bottles were alternated and I spent days sat resting but my knee continued to swell up until I was no longer able to walk. The crutches had to come out the loft and I was popping codeine to try and stop the constant pain. Luckily, this time round I knew what was going on and knew I wouldn't have the months of hell ahead like last time.

I already had an appointment with my consultant the following week but I rang the hospital arthritis helpline for some advice to get me through the next few days or hopefully bring the appointment forward. They eventually got back to me the following day to tell me there wasn't anyone available to speak to me until after the weekend, when they would call back. By Monday I was thoroughly fed up, the weather had been amazing and I had spent most of the time sat in a chair watching my friends Snapchat their lives at the beach and having picnics. The pain had been particularly bad and more constant than last time. As predicated, the hospital did not call me back but given I had an appointment in place I didn't worry too much and concentrated on getting through the next couple days.

A few days later I hopped (literally) in a taxi and saw a knee Dr who once again aspirated the knee, taking out all of the excess fluid that was causing the swelling. The average knee only has a few ml's of fluid in there but she managed to get a whole pot of yellowy/orange liquid out of my little knee. The procedure wasn't pleasant, in fact, it hurt a lot. Having a needle placed in the side of your knee, under your knee cap, is not fun but the Dr was amazing in keeping me calm and the instant relief once it was done was bliss and 100% worth the discomfort. Within days I am now able to walk again and the swelling has (touch wood) not returned. The Dr agreed that my Crohn's seems stable and that both my arthritis flares have been due to 'exercise' (see gentle stretching) and that I would therefore benefit from having physio and strengthening the muscles in my legs again to try and support the joint. Fingers crossed, once that is sorted I won't have these flares as often!

Next week I am off on a city break to Rome & I could not be more excited! Having to cancel my holiday to Paris last year was absolutely gutting so I was determined to make it this time round and so far things are looking good... Roll on Italia where I will be doubling my body weight in pasta, pizza & gelato!