Me and IBD – One for the youngsters

Posted on May 14, 2013 by

Crohn’s and Colitis UK are a national charity that provide help, information and support for people affected by IBD.

The Me and IBD section of the charity is to provide support and information for young people living with IBD, or have been recently diagnosed with Crohn’s Disease or Ulcerative Colitis and is brought to you from Crohn’s and Colitis UK.

I was asked to write a guest post to share my experiences with IBD and being young (I just make it into the 16-29 year old age bracket!), so please take the time to read it via this link:

Me and IBD

My story has moved down the page a little due to X-Factor’s Rylan talking about growing up around IBD, so either read through his stories until you get to mine or scroll straight down until you see me dressed as a dinosaur.

Let me know what you think. I shall post my story here in a few weeks once all of you have visited the official Me and IBD site.

Ben x

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Fighting Crohn’s Disease on a Tandem

Posted on April 8, 2013 by

Hello to all my Crohnies old and new.  I am sat writing this latest blog while slightly spaced out on pain killers, home off work due to my silly tummy and even sillier IBD.

Over the weekend I helped celebrate my wife’s Grandma’s 90th birthday. This celebration included a lot of party food and subsequently led to a rather upset bowel.

Yesterday saw me struggle with diarrhoea which I tried to control with loperamide tablets (Imodium) then during the night I had really bad cramps which meant I didn’t sleep well and had to call in sick to work (I probably overused the loperamide).

As I’ve mentioned before, calling in sick to work is something I try not to do too often but sometimes there is no choice.

This is just a usual weekend for me and my Crohn’s and it isn’t even at its worse. It can be a horrible disease to have to live with. It is incurable. It can be suppressed by medication but not forever. You are always looking over your shoulder; waiting for Mr Crohn’s to return.

Because of this disease and its sister, Colitis, a charity called Crohn’s and Colitis UK was set up (aka NACC). They are a fabulous charity who help provide information and support to those who suffer from the affects of IBD. This is not just the person with the illness but their friends and families. They offer support over the phone as well as local groups where anyone affected by IBD can meet up.

They have a couple of subsidiary groups too that cater for different age ranges, from smiles with younger children to IBD and Me for teenagers as well as the overall umbrella group Crohn’s and Colitis UK that caters for everyone.

Here are some useful links:

Crohn’s and Colitis UK: http://www.crohnsandcolitis.org.uk/content/home.asp

Smilies: https://www.nacc.org.uk/content/services/smiliespeople.asp

IBD and Me: http://www.ibdandme.nacc.org.uk/

Local Groups: http://www.groups.crohnsandcolitis.org.uk/default.asp

Each year my local group, Leicestershire and Rutland, hold a fundraising event called “The Bluebell Walk and Cycle Ride” which is held at Rutland Water. This year Notts and Northants groups will be helping to organise the event.

It is a brilliant event that helps raise much needed funds for our local group as well as for the national charity funds.

This year my wife and I are tackling the hardest challenge of this event, the 25 mile bike ride, on a tandem, dressed in our onesies (Walk in your onesie being this year’s theme).

The bike ride takes us around the beautiful Rutland Water reservoir, taking in the glorious Bluebell woods (So called as this time of year the woodland floor is carpeted by Bluebells). Being a reservoir you would think it would be easy and flat…..(This is what I told my wife), in fact there are some tough hills and tricky terrain. She hasn’t ridden a bike for 15 years, so tackling this challenge, dressed in a silly outfit is really going to take some serious effort.

So to help spur us on we are looking to raise as much money as we can to help make it worthwhile.

So please help us achieve our personal goal of £250 by going to our JustGiving page and donate as much as you can. We don’t care if its 1p or £100, it all helps.

So please visit:

http://www.justgiving.com/BenSuziOnATandem

and generously help those in need.

UPDATE:

You can now text your donations by sending the word BRSR85 with an amount, e.g £2 to 70070

Every little bit of cash we raise will be used in funding research, support and help for those affected by an IBD.

Thanks

Ben x

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Steroid Abuse

Posted on March 11, 2013 by

It has been a while since my last bout of prednisolone. Steroids are a funny old drug but they are very affective in dealing with inflammation.
My recent scans showed my disease to be calm which was very reassuring. Crohn’s Disease, being the pain in the backside that it is, likes to keep you on your toes. My bloods can show no signs yet scans show active disease areas and vice versa. This time it was my bloods that came back showing a high Platelet activity with a high white blood count. Add all this to my general feeling of lethargy and generally feeling a bit pants, my consultant thought it was best to start a course of steroids to help calm the inflammation before things got serious.

So I began taking my steroid medication as soon as I got home but the side effects took a few days to properly materialise.
As many of you know steroids can affect your body and mind in many ways. Long term use can cause osteoporosis as well as a host of other nasty things. Short term the biggest side effect for me is the mental changes. I don’t seem to suffer too bad with the physical side effects, other than bags under my eyes. I don’t swell up in size or anything; which is lucky.

My emotions seem to become heightened in sensitivity. I am much more aware of thoughts and feelings and I begin to dwell on them more. It is quite scary to think that they can change your personality so easily and quickly without you particularly realising.

One of my first experiences with steroids had me super emotional. I was looking at the TV listing and there was nothing on TV that night. I began to well up. I was so upset that I began to cry. It probably took all of 5 seconds to realise this was not normal and that I was being silly, but for those few seconds I was distraught. It is amazing how hard it hit me. I was really upset about the lack of decent TV shows that night.

This time it has manifested in a couple of ways. I am more emotionally unstable than ever before and a new one to me is being more obsessive. I get a thought in my head and cannot focus on anything else. For example one week I would desperately want a sports car. This thought would dominate my entire day. I would be searching in the papers and online trying to find the perfect one. I would try and work out how I could afford it. I would talk constantly about wanting one. The thought of buying a car would be the first thing I thought of in the morning and the last thing at night. It drove me insane. I knew I couldn’t go out and get one, so why was I torturing myself? I would be genuinely distraught when I worked out that I couldn’t afford to buy a new car.

I was getting upset by a lot of things. I found myself walking down the street a few days ago, happily basking in the Spring sunshine when I saw an ambulance racing through a busy cross road. In the space of 3 seconds the following went through my mind:

  1. My goodness he is really going for it. Barely slowing down. He must be attending a really serious incident.
  2. Wow. What a guy. Saving lives every day of his working life. A true hero.
  3. Somebody is in a serious way to require an ambulance that badly.

All of these thoughts flew through my head very quickly and resulted in me shedding tears, possibly even a small sob in the middle of the street. I soon realised this was quite irrational and not what a normal person would do. I wiped away the tears and hysterically laughed at my ridiculousness for the remainder of the walk.

It is amazing that a rational and stable guy can be reduced to these thoughts. It makes me worry for those who are not as strong minded as me. What happens to those who struggle to understand that it is the medication not their own, real thoughts?

The racing heart, insomnia, tiredness, crazy thoughts and all the other negatives are very difficult to control. I’m glad it is only 6 weeks treatment. I know of people that have had to remain on steroids indefinitely which can cause many long term problems. I guess I have it lucky. Right, it’s been at least 20 minutes since I last looked on the auto trader website or cried, so I had better get back to it….

Ben x

Crohn’s update: The steroids seem to be calming the symptoms, although they have not been suppressed completely. There was talk of upping my Mercaptopurine dose if things do not settle. I would like to reduce medication intake not bump it up! But it’s all for the greater good.

Posted in Mercaptopurine Diary | 4 Comments