Guest Writer - Peter

Hi my name is Peter.  I have had Crohn's Disease since 2006; maybe a long time before that. After finding out how badly damaged my small bowel was after a number of tests and investigations, a full diagnosis was made in 2006.

The beginning of my journey with Crohn's Disease was a very bad experience, since I knew virtually nothing about the condition, to find out that this was going to be with me for  life  was a very daunting prospect.

I went through all the normal drugs and treatments but as many of you are aware some people suffer from a flare up from time to time and the first line drugs can help put you back in remission. For me these first and second line drugs  just don't cut the mustard. The most important thing I have found to deal with this condition is to keep a positive attitude and support.

So after surgery in 2007, I enjoyed a five year remission. Looking back I was very fortunate for this to happen but surgery did leave me with other problems. I was left with permanently loose stools but this was relatively easy for me to cope with in comparison to the horrible pain  I had endured before surgery.

In 2012 my Crohn's Disease came back. Six months of tests and investigations revealed inflammation and ulceration on the site of my previous surgery. During this time I decided that I would not just sit back and do nothing. IBD can leave you feeling very isolated and even depressed since you lose so much weight and fatigue starts to set in - to the point that you don't want to leave the house. So, it was time for me to try and spread the awareness of this challenging disease. How was I going to do it? I pondered for a while.

I decided to set up a website devoted to Crohn's disease. It had been fifteen years since I had last created a website but I was determined to try and create a platform for me to help people who were suffering as I was. I created a very basic website www.crohnsdiseasesupport.co.uk and followed that up with a Facebook page and Twitter account. To my amazement I got hundreds and then thousands of visitors to my site.  I was very reluctant, at first, to bare all about my condition and story to the world but I found the more I shared my journey, the more people wanted to share their experience with me. I also found it a great way to let off steam and got so involved with creating the website that I found it much easier to get through my  dark days.

The website was so successful in getting my message of support across to others that I then developed and ran my own professional website www.crohnsupport.com

The website gets over 1,000 views per month.

The website would not be as sucessful as it is without the support of my fellow Crohnie brothers and sisters.

The biggest help to me was joining a Facebook support group called Bowel Disease One Global Family. I met so many amazing patients that were willing to share their experience and knowledge with others. It was, and still is, a truly inspirational group. If you just reach out for support there are so many patients willing to support each other.

With the support of fellow patients and the IBD specialist nurse service at my local hospital,  life is now much easier. What I find heart-warming is that, even in the clutches of this disease,  I have someone to turn to for support - even if it's just a simple question of how best to prepare for an investigation. I know I will get some great advice or support whilst I am preparing.  I think it's just so important to know that I have support from patients that have been in my shoes and their advice and support is always valued.

My overall message to anyone diagnosed with IBD (Crohn's Disease or Ulcerative Colitis) is to talk to your IBD nurse if your condition worsens. Don't wait for your next appointment, these angels can get you the right care at the right time. Most of all they understand the condition, unlike many doctors. They are specially trained to care for people with IBD. Please don't be alone, get support from other patients, they know how you feel and can help you get through some of the tough times. I am very lucky to have an amazing wife, family and friends whom I can talk to but talking to another patient who is willing to share their experience with IBD is really amazing.

Thanks for reading and get some support "patient to patient is the best medicine".

Peter Buckley

How Others See You

People with IBD often feel that those around them, even close family or friends, just don’t seem
to understand what it means to have Crohn’s or UC.

They may desperately want you to be well, which puts a great burden on you to appear well even when you are feeling ill. They may fuss around you excessively, even on the occasions when you’re feeling fine. They may be extremely worried about your illness, or they may put your symptoms aside as trivial.

You may find some people will blame your personality for the disease. “Oh, obviously you’ve got it because you’re such a worrier,” they may say. This can be irritating, but the absence of a clear, scientific explanation of the cause of these diseases can leave it open for some people to believe that personality is a factor. This situation is not helped because it is commonly accepted that anxiety, fear and stress can have an adverse effect on people’s general health, particularly on their bowels. But there is absolutely no evidence to suggest that IBD is caused by stress, although stress may in some cases be a factor in causing flare-ups.Being told what to feel can also be irritating. People will sometimes say things like: ‘Cheer up’ or ‘Don’t worry’. They may suggest you try different diets or ask whether you have tried alternative or complementary therapies. These suggestions may annoy you even though they may be offered with the best of intentions.

Sometimes people may claim that they, too, suffer from colitis, when what they are describing are the occasional ‘tummy complaints’ which they have for a few days and which are then over. It can also be very difficult getting over to other people what ‘urgency’ means. Friends may say: ‘But surely you can hang on for a couple of minutes?’ with no idea that you simply can’t.

It’s true, most people don’t understand IBD, but this is probably not that surprising given the generally low awareness of UC and Crohn’s Disease, and the confusing and unpredictable nature of these conditions. However, if you can tell your family and friends at least something about your illness you may find it helps you to feel more in control of your situation and less anxious about your symptoms and treatment. Your family and friends may also find it reassuring.