Guest Writer - Nick

Hi, my name is Nick, I am 25, and was diagnosed with Crohn’s disease when I was 13 years old.

My condition is currently partially controlled with a combination of Methotrexate and Humira, and I have experienced Pentasa, Mercaptapurine, Prednislone, and Salofalk Mesalazine foam.

My condition has been better in the past few months, so I’ve wanted to be able to help others while I am in a position to do so. I started a twitter account called ‘Awkward IBD’ (@awkwardIBD) detailing the ‘lighter’ side of IBD, and so when I was subsequently asked to write a blog for Me and IBD, I was honoured!

I realised, however, I’ve never written anything really meaningful, and certainly not over 140 characters…

I’m not a celebrity or sportsman, who can tell you about how I can cope with things far beyond the average, and prove that IBD sufferers can do anything… Nor am I particularly funny or inspiring…

(I think they may have the wrong man for the job…)

But before I email them back, and tell them they’ve made a dreadful mistake, I thought I’d type aimlessly and see what happens…

(543 characters! Nothing meaningful yet though…)

The fact is, I am your average IBD sufferer, and I hope (because it’s all I have right now) lies the value in what I am writing. I have toilet-centric agoraphobia, my belly hurts, and I spend far longer than I’m happy to with my trousers round my ankles (in a purely socially acceptable manner). If you already have IBD and are used to living with it, this may not be ideal for you (though I hope you can empathise), but the newly diagnosed, who don’t know what they are facing… those are the people I may be able to help.

The internet reaches everyone, and everyone is different, I have no idea who I am actually talking to, so, I will imagine I am talking to my 13 year old self. That quiet kid, who had no idea. Who one autumn evening in 2001 was told he had a disease he’d never heard of. These are the things I would tell him, and these are hopefully the things which would have made the next 12 years easier…

Information Gathering – ‘Knowledge is Power’ vs. ‘Ignorance Is Bliss’

Your first instinct will be to go out and find out as much information as you can about your condition. 

Undoubtedly you will go looking for cures and what can help you. I completely agree with this idea, but I will urge caution for a number of reasons.

The internet is filled with horror stories; from ineffective treatments, horrible side effects, clueless doctors and horrific symptoms. It is all there, and almost certainly, the easiest information to find.

I’ll deal with each in turn, please bare these points in mind when you are researching.

Every treatment, is not 100% guaranteed to work; I've been told that for many, the chances are as low as 25%. However, these treatments have to pass clinical trials, and are proven to help, whatever sceptics, keyboard warriors and conspiracy theorists would have you believe. 

Doctors** prescribe these treatments on a fairly regular basis, and monitor their patients…if it didn’t work for any of them, they wouldn’t prescribe it! When your Doctor is prescribing you a new treatment, ask them in their experience how effective it is, and how likely it is to make a difference. 

You can research all you like online about a certain drug, but you are very unlikely to get an impartial view. You will either likely be reading the pharmaceutical companies’ ‘blurb’ on why their drug is the drug to buy, or, doubters and disgruntled patients, who have had their hopes dashed because it didn’t work for them,  who are equally biased in the opposite direction, whether consciously or not. The best person to ask about effectiveness is your Doctor, as they will have (hopefully) an impartial view, and prior knowledge of how often they are effective with other patients.

Similar to ineffective treatments, sufferers all experience side effects in different ways. I myself have had the same courses of drugs over the years, and each time have experienced different side effects. I also know other people who have experienced further completely different symptoms. Everyone’s experiences will be slightly different. Hopefully you won’t experience any, but if you do, bare this in mind. When asking your Doctor about these treatments, also remember to ask about the most common side effects and those to really look out for in case they are indicative of a further health risk. Although they are all listed in the drug’s information, many of those listed are not common and you can mistake or miss important/’tell-tale’  side effects.

Quite often online, you will come across people complaining about their Doctor. While, no doubt, there are bad workers in every profession, I wouldn’t assume everyone slating their Doctor online is visiting Dr I.N. Competent. Doctors can only work off the information presented to them, often, as I will cover later, a patient can either miss, or say something which will guide a Doctor in the wrong direction (whether anyone is at fault for this is a conversation for another time). Learning to communicate with your Doctor in the right way, is very important, and can save you an awful lot of time and trouble. Just because a consultation or treatment hasn’t gone how you would like, or expect, it is not necessarily because they are a ‘bad Doctor’.

The symptoms of IBD are wide and varied. I have read many people’s stories online, which

makes my condition pale in comparison. I feel dreadfully sorry for them, and what they are going through… 

HOWEVER, you must remember 2 things. One, the more severe cases, are likely to be the ones shared, and two, just because someone had it that bad, doesn’t mean you will. That is the one positive with IBD; it is not a condition where everyone ends up at the same place. Some people will have virtually no problems all their life; some people will have tremendous difficulty. Most will fluctuate in and out of these two states to varying degrees.

The last thing to be wary of, and I aim this more to parents of young people being diagnosed, is to exercise caution in finding every fact and reading every story, as it can be a very frightening thing, especially for a younger person. My parents protected me, I would argue a little too much, but I appreciate why they did it. If at 13, I had been presented with everything I know now, I don’t think I would have been as confident and up for the challenge of fighting the condition as I was.

At the end of the day, it is your decision. It makes sense to find out as much information as you can. To know what you are fighting, what you are up against, but be honest with yourself… If you are the type of person to be easily down heartened, think very carefully before delving too deep. You cannot un-see and unlearn what you find, but if you are positive, look in the right places, and ask the right people the right questions; you will put yourself in a much better position to lead the best possible life with your condition.

(**Doctors are not often solely responsible for the well-being and care of an IBD sufferer, and the work of nurses and other healthcare professionals is invaluable to many IBD sufferers. For simplicity's sake, I have used that instead of other more unwieldy wording…)

Guest Writer - Steph

Steph from Imagine Being Different talks about Staying Strong...

Have you ever had someone tell you that you couldn’t do something? I’m sure everyone has, at some point in their lives and for me, that’s what living with IBD was like, “someone” always telling me that I couldn’t do the things that I wanted.

What do you do when someone says “You can’t do that?” You rebel. You stick up two fingers and you eat all the things that you shouldn’t, go out drinking, stay up late, all in the attempt to feel like a “normal” person. You do it, even though you know that bar of chocolate/curry/pint of beer that you consumed will keep you up all night and you’ll most probably end up sleeping on the bathroom floor because it’s just too much effort to keep on going back to bed.

Unfortunately I found out the hard way how hard it is to fight against IBD, that all the food that I shouldn’t have been eating, the late nights, made all my symptoms worse and put me in hospital.

I was diagnosed with Ulcerative Colitis when I was 19, I am now 24, and it was a really hard time in my life because I was at university. I was so embarrassed to have been labelled with a bowel disease at the age of 21. I didn’t tell many people about my symptoms at first, they just knew I was sick. How was I meant to explain that I went to the toilet more than 15 times a day, that I bled, that at very horrific times I couldn’t control my bowels and that I was exhausted constantly?

Slowly, I came to realise that there is absolutely nothing to be ashamed of. The only reason that people are embarrassed by this disease was because it centred around poop, and let’s face it, no one wants to hear or talk about this subject. In the beginning, I never spoke about the intricate details of my disease but I did start to open up more. Why? Because no one had ever heard of IBD and I wanted there to be more awareness.

Now, I talk very openly about my journey. I don’t tend to sugar coat things, even if it is disgusting because unfortunately, having IBD is a part of me and if you are grossed out by it, then I know that you’re not the kind of person that I want in my life. Also, the only way people will understand the shortcomings of having a debilitating disease is if I tell you the good, the bad and the ugly and more importantly how I’ve managed to overcome each and every single obstacle in my way.

First it was just being diagnosed with IBD, and then it was multiple trips and stays in the hospital. In 2010, when I was 21, I had an operation to remove my large intestine because I had a virus in my bowel which wasn’t letting the Colitis settle.

At first, it was a hard adjustment having a stoma bag at such a young age. I would feel self-conscious, that people would see it and judge me, and I was really embarrassed. Who poops on the side of their body?! Gradually, I came to terms with it and instead of hiding away I told everyone about it, and felt no shame in lifting up my top and showing people exactly what I had. It stared to become my party trick when I was little drunk “I hash a stoma bag, wanna see?”

 I started a blog as a coping mechanism, a space to be able to vent, to show people how I lived with a stoma bag in everyday life.

God, there were times that it infuriated me, like when I was in Rome and my bag split and leaked all over me.

I remember crying in the taxi and then laughing. Only that would happen to me, but more importantly, I didn’t let having a stoma bag stop me from getting on a plane and travelling to Rome in the first place.

The biggest achievement so far is that just before I graduated university, before I had my operations I decided that I wanted to travel Australia. I was saving up to go when I had my first operation and I had a decision to make. Do I go to Australia with a bag or do I wait until all my operations were over?

I decided to go for the reversal, and travel once I had my J-pouch.

Unfortunately, my J-pouch is very temperamental and I developed chronic pouchitis. Which is very similar to having colitis as the J-pouch becomes inflamed and bleeds. It seemed that Australia was not meant to be.

But I said from the very beginning of being diagnosed with Ulcerative Colitis that I would not let it hold me back. I’ve learnt to live with the disease instead of fight it, to listen to what my body is telling me. I’ve learnt that sometimes, I do need to take the time out to rest and it’s not me being weak, or missing out, it’s just me having a disease that sometimes can stop me doing everything all at once.

As I write this, I smile because I am in Australia, on a working holiday visa. It may not be when I planned to do it, but nevertheless I am here and I am the healthiest I have been in long time.

From personal experience, things do get better. You learn what is good for your body, for your mind and things do get easier in time.

My disease does not define me. Sure, having IBD has helped me work on myself on a personal level. I’m more outgoing, and I have learnt that I am one seriously tough cookie. It’s helped me to be more courageous, it’s helped me to reach out and help people and it’s shown me how unbelievably lucky I am to have so many people in my life that support me.

But underneath it all I’m still me. I just happen to have Inflammatory Bowel Disease.  At times the life I lead is compromised by it, but it doesn’t stop me from leading the life I want to. It just means I have to be flexible to the idea that things may change, and they may not happen exactly how I want them to but eventually they will happen, because I can achieve anything I set my mind to. 

Steph writes her own blog "Imagine Being Different" - be warned, there are lots of pics of her life in Australia, which are highly likely to make you jealous!!

Guest Writer - Vicky Talks About Diagnosis

Hello:)

 

Vicky, 29, has UC

Here I am again!

In case you missed my last post, my name is Vicky, aka Vic, I'm 29 (!) and I was diagnosed with Ulcerative Colitis in May 2011. I had suffered symptoms for a very long time prior to this though and the road to diagnosis was LONG.….

I am delighted to be a guest writer on this exciting project, I really feel that it does help to share your experiences and feelings with others and I find the support of the online IBD community very comforting at times.

Today I'm going to talk about initial diagnosis, feelings etc. As I said my road to diagnosis was long, some stories I have heard have been worse than mine, and some people have been very lucky and been diagnosed almost immediately after experiencing their first symptoms.

My initial reaction on being diagnosed was 'thank goodness they've finally figured out what's wrong with me'. I think a lot of people may experience this initial relief, but this can quickly be followed with confusion and shock. You may not have been expecting to be diagnosed with a long-term illness, particularly one with no known cure at present. You may be confused with trying to take in all that the consultants/doctors have told you.

It can seem like a lot of information in a short space of time! It can also seem confusing at first as there is no known cure and there is little known about what causes the diseases. Also your treatment plan will depend on how you personally respond to initial treatment, so there is not even any guarantee that the first treatments you receive will work.

 

These are all normal reactions and I personally have had the lot!

I think I mentioned previously that I find it helpful to share things with other sufferers, and that it partly why I started my own personal blog (insert link). I find sometimes it is easier to point someone that I may not know very well to my blog rather than describe my illness to them.

Everyone is different and emotionally we all deal with things in different ways.

I find that I directly tell the people that need to know (family, close friends, essential colleagues (ie bosses) and then assess everyone else as I get to know them. There are only a few people that know about my illness in my current job. It's not that I'm embarrassed (if you are, don't worry) it's more that it's just not the kind of thing you bring up in everyday conversation…!

It can be very difficult to explain to someone that doesn't understand the illness, you may find it helpful to give them the Crohn's and Colitis UK web address www.crohnsandcolitis.org.uk so that they can have a read. Lack of understanding can make people around you react in different ways. Those close to you may be constantly asking if you are okay, you may find yourself answering that you're fine, even if you're not to stop them worrying. I find I sometimes do this to my mum! It's not always ideal, but we do not want to worry those around us who we love.

There will be those around you who are the other extreme and try to tell you that there is nothing wrong with you, or to 'Get Well Soon'. Although this is not particularly helpful, I'm pretty sure they are doing this with the best intentions. I tend to just smile sweetly (and fume inwardly) when this scenario occurs. We can try to educate people as much as possible, and sometimes it is frustrating when they don't understand, the important thing is that you know your body better than anyone and if you need to take a break or say 'no' to someone, or something, then please don't feel guilty about it!! Again this a perfectly natural feeling. It may be that you have gone from living life to the full, to hardly leaving the house within a very short period of time. It can sometimes feel like there is no light at the end of the tunnel.

I promise, there is. I am living proof of that :)