Guest Writer - Joey

It's been almost 6 years since I was diagnosed with Crohn's Disease. I vividly remember the first time I started to feel a dull ache every now and again from a part of my body you never want to feel pain - you guessed it, the anal region. I wasn't too concerned at first as I thought it may just be part of growing up, but I guess I was naive. 

At the age of 16, everyone thinks that they are invincible when they are that young. It was probably weeks maybe even months before I actually plucked up the courage to tell my parents about it, as you would have guessed I was very embarrassed, I hadn't even said anything to my closest friends but the pain was becoming quite unbearable and it just wasn't going away. I knew I had to do something.

The doctors were originally very vague in telling me what was actually wrong with me and couldn't actually give me a definite answer on any of the questions I had, which I would later find out was one of the major factors in why it would get so severe. Had they been able to diagnose it sooner I don't believe my condition would have got as bad as it did.


After making numerous visits to my GP they came to the conclusion that it was an ingrowing hair which had caused an infection. Boy, could they be any more wrong? As you can imagine stress levels were high. At this period in my life I was in the middle of my GCSE's and I would later find out that one of the main triggers of Crohn's is stress. Things were getting worse and I still did not know why. Coming away from the doctors surgery very unhappy and dissatisfied with their diagnosis me and my parents discussed that the only other option would be to make an appointment at the Gastroenterology department in Hereford Hospital as the pain was starting to get rapidly a lot more difficult to deal with. 

It was soon after this that eating was starting to become a real issue for me as I just stopped. I couldn't even explain why I just felt full all the time and couldn't even stomach my mums Sunday dinners which showed just how serious the problem was who can refuse their own mums Sunday dinners! It was at this point that my closest friends at school were starting to see a real change in my character as well as my physical appearance, as most people know I've always been quite a stocky lad and my weight was dropping at an alarming rate down to nearly under 9 stone. This was increasingly frustrating for me as I wanted to let my friends and classmates know what was happening but I didn't even know myself. But I was about to find out.

Of course I was extremely nervous on the morning of my hospital appointment what young lad wouldn't be? But I was in such pain that I just wanted a resolution to the problem. The consultant examined me and deemed everything okay for a small routine operation to remove some infected skin which I was told would be the end of my problem. It was only then that I happened to mention that the pain was coming from a different area also (a smaller lump that had appeared) . On re examination the consultant then looked at both me and my mum and told us he had made a mistake. We looked at each other directly in the eyes thinking exactly the same thing, Cancer. To my relief he immediately quashed this fear but he did diagnose a serious chronic condition that we knew nothing about. This was the first time I had ever heard of Crohn's Disease.


The operation still went ahead but they decided to use a camera to try and investigate the extent of the inflammation. I would later find out that this was inconclusive and they didn't actually find out anything they didn't already know. Things accelerated so rapidly after this as what I didn't know was an abscess was forming. At this point I was only really attending school to sit my actual GCSE's and I would like to thank Fairfield High School for the understanding they showed allowing me to take comfy cushions into my exams as well as jelly babies and other sweets to keep my energy levels high as the extreme fatigue caused by the condition was something I had never experienced before. 

In the days after the exams things really started to take a turn for the worse as the abscess was about to burst. The pain at this point was so severe that I remember saying to my mum I wanted to punch a brick wall so hard that at least it would change the focus of pain even for a couple of seconds. I was so angry with it I couldn't think or do anything else. I was admitted to hospital immediately and put straight onto morphine to try and control the pain and after a few days an operation was finally carried out. It wasn't until I had awaken from the surgery that I knew the extent of what was needed to relieve my symptoms. 

The operation left me with an open wound that would require packing and dressing every

day for many weeks. The nurses at this point tried to show my mum how to dress this for me but after taking one look at the damage that they had left she fainted right there in the hospital ward and needed oxygen herself!.It's safe to say she wasn't fit to do this and the job was left to district nurses and this was one of the worst experiences of my life. Imagine at the age of 16 having to have nurses intrusively everyday looking at the most private areas of body, especially when they were young and good looking!


Due to the inflammation in my bowel, an abnormal passageway had been caused. This was otherwise known as an anal fistula. This is essentially a small channel that develops between the end of the bowel, known as the anal canal or back passage and the skin near the anus, where obviously waste leaves the body. My problem was that the fistula was branching out into more than one channel. There was only one way to stop this and this was to insert a number of small drains into the passageways to help divert the waste and stop the build up. This would prevent another possible abscess. 

These drains were to stay with me for around 9 months and I have never told anyone this but I had to use pads walking around to collect any lets say..unexpected gifts. Having placed me on steroids the combination of them and the drains, finally got the condition under some control. This was never a permanent situation and whenever they tried to reduce the dosage of steroids, I would see myself falling ill again. This would happen over and over for a good 12-18 months. There was no real way to get the Crohn's under control. At my worst I was taking almost 100 different tablets a week. 


The most frustrating thing for me and my family was just nothing worked. Any time there was a bit of hope the Crohn's would flare up again. I tried to live as normal a life as possible. At this point, I was enrolled in Hereford Sixth Form College and was trying to get on with my education, but obviously I was incredibly embarrassed by my condition and only a select few of my closest friends knew what I was dealing with right through Sixth Form. They know who they are, and I thank them. Eventually after 3 years of unsuccessful treatment, I was trialled on a brand new, very expensive drug called Infliximab. 

Since August 2010, I have been regularly attending the hospital every 8 weeks. I have this drug administered through an intravenous drip. This combined with a daily drug called Azathioprine and regular blood tests has allowed me to steadily gain weight again, eat what I like and generally stay fairly healthy. I still suffer from the fatigue and some other minor issues but at least for the moment my quality of life has much improved. I have been told that the Infliximab is incredibly strong and nobody knows the real long-time side effects, so it is not an option to stay on this permanently. 


I really don't know what the future holds for my disease, and I hope that when I am no longer able to take this drug that there is something new for me take instead as I do not want to go back to the way I was almost 6 years ago. Although this could happen, I just try not to think about it. Despite the severity of this condition, and I admit at times it has got me really down and  quite depressed. I try to be as positive about it as possible. 

It hasn't stopped me in life as I am in the last few months of a business and management degree at Cardiff Metropolitan University, something I could never see myself doing a few years ago. It goes without saying I appreciate the support and understanding of my parents and friends about my condition but I would like to say a huge thank you to my sister Katie as she has written a few pieces as well as a radio appeal on Crohn's Disease and is extremely understanding and supportive of my condition.  


Crohn's disease is a very debilitating and embarrassing disease to live with. I have never spoken about what I have gone through before as to be honest, I never really knew the true meaning and just tried to ignore it. As there is currently no cure for the disease, I am purely writing this to help raise awareness in the hope that there can one day be a cure to stop people going through what I have and what the thousands of other people in the UK are going through- many who have had it a lot worse than me. 


Thanks for reading,
Joey

You can follow Joey's story at his blog: My Crohn's Disease

Guest Writer - Beth

Gap Year Travel with IBD

So anyone else dreamed of that elusive gap year adventure abroad?

I use the word ‘elusive’ because more than just perhaps money or commitment issues, for an IBD sufferer a trip of lifetime will seem even more elusive, or perhaps even impossible.

I was diagnosed with Crohn’s disease in 2004 and felt although not a ‘death sentence’ that it was the end of any adventure or dreams I wanted to achieve. However, over the years I have improved and actually gone into remission. I managed 3 years of university, which although there were some tough times, I’m so proud I did that. Once I graduated and realised that dream of a degree, I wondered if that gap year dream would be achievable too.

My boyfriend quit his job and so did I. With savings and inheritance money we went ahead and booked some flights to Bangkok, and planned a trip around South East Asia for 3 months. After the initial rush of excitement suddenly the fear snuck in:

      What if I have a bad flare up?

                  What if I can’t get necessary drugs?

                              What if I get food poisoning?

                                              What if, what if, what if??!

After several panicked and tearful conversations with family and friends they reassured me I could do this and not to let the fear of the condition flaring to stop me. I researched the area thoroughly with didn’t help my fear as it seemed certain countries like Laos and Cambodia have very limited medical facilities. Suddenly I was wondering why had I chosen hot, exotic and poor countries to explore?

Over the next few months of planning I collected all my medicines, with extra (over 800 tablets!)  And researched my travel insurance thoroughly, insuring they covered my Crohn’s condition. I packed lots of over the counter medicine like re-hydration sachets, diarrhoea relief tablets etc. until it seemed like my bag was bursting. I got a letter from my doctor to ensure I could show border controls what all this medication was for. I was terrified of them confiscating it or something.

So finally the day came when we left. As we boarded the first 7 hour flight my boyfriend squeezed my hand and reminded me I’m not alone in this and he’d look after me. Truth is I was so terrified I don’t think I could have boarded without him and his reassurance.

Those 3 months came and went so fast I almost don’t believe it happened.  Throughout my time there my condition varied. Amazingly enough, after a few weeks of immersing myself into oriental/Asian cuisine I felt a noticeable difference. No bloating. No gas. No diarrhoea. It felt so good to feel comfortable after a meal. I ate pretty much only noodle, rice and stir fry dishes. The portions were small but surprisingly filling. I had very little stomach aches. I’d have the occasional day where it was bad but looking back now that seemed to be when we’d had western food. This could be a coincidence of course but I think I’ve established some food triggers now that I never had before.

Because I was having such an incredible time doing exciting things each day I hadn’t initially noticed the difference.  But my boyfriend remarked on how active and healthy I seemed. It was true, I felt less lethargic and lighter. The humidity and travelling took an effect, with 52 mosquito bites on one leg and cuts and bruises, I may not have looked the healthiest but I felt a real difference. What an absolute surprise.

However the worst did happen. I got food poisoning. I guess in some ways it was inevitable in humid countries that don’t understand the concept of health & safety. We did try and choose our food places carefully but that was almost impossible. I got food poisoning in a tourist café that was on a pre-arranged tour. And yet I’d previously been eating street food with no problem. So it’s a hard thing to judge.

Anyway, we got a 6 hour coach journey across the Cambodian border and gradually I started to have unbearable but unfamiliar stomach pain. I felt faint and so nauseous. By the time we arrived at our hostel I collapsed on the bed in agony. Tears streamed down my face because I was so frightened what this meant. I understood that because of my Crohn’s, a normal 48 hour food bug could turn into something much much worse. Worst still, we’d just left the capital of Vietnam where the medical facilities were good, into the poorest country we were vising. I couldn’t believe the odds. I lay on the bed clutching my stomach with my head over the bin bracing myself to throw up. I was sweating and uncomfortable.

The temperature was now somewhere near 47 degrees with no air con and the knowledge I’m in one of the poorest countries in Asia. In that moment I would have done anything to have been home.  Thankfully my boyfriend went on a hunt for medicine and after an hour or so he returned with some medicine he’d managed to get from a pharmacist. There was hardly any English on the packet but my boyfriend seemed convinced the man understood my problem (even if it was acted out to him as he had barely any English skills).  Over the next 24 hours the pain stayed the same and I just tried to keep sleeping. Eventually, with the aid of the medicine the symptoms seemed to ease off. By the third day I felt well enough to move to different accommodation. We spent the day taking it easy. The next day it seemed to have passed and I cannot describe the relief.

Although more nervous after this incident we continued to enjoy our last month back in Thailand and thankfully without any more stomach problems.

Since returning home I discovered I’d lost a stone in weight but I looked good for it. And of course once back into bad habits here like snacking, chocolate etc I’ve slowly put the weight back on. Actually since being back in the UK, the food tastes so fatty and rich to my new palette and I realised new reactions to wheat. So in fact it was good to discover these.

In conclusion that trip has completely changed my life in so many ways. It’s changed my confidence, my awareness, my diet, and much more. Besides being the best thing I’ve ever done it also signifies so much. I did it and I will always be proud that I took the plunge. If I can do something as exciting, challenging and different as this trip, I can do anything. This disease does not have to stop me doing anything.

I would advise several things if you consider taking a trip:

•    Research your insurance thoroughly and actually speak to your provider and discuss your concerns, insuring you are covered for your illness. Take all details with you.
•    Take some over the counter medicines (like re-hydration tablets and vitamins) to help keep your health up.
•     Bring not only the required amount of medication but EXTRA.
•     Carry a letter explaining all your required medicine and why you have it.
•     Do some research of medical facilities available in the areas you’re visiting before going (just in case) and check the prices.

-   Take extra money if medical assistance is required. Although you’ll get the money back from your insurers, you have to pay yourself initially. So make sure you have some available.

-    I would personally travel with someone and make sure they know the details of your condition. But this is just a personal preference.

Some of these things I didn’t need in the end, but it will vary massively from country to country and with circumstance changes. So I would recommend having these things in place just in case.

Otherwise my parting message is plan, prepare and take the leap of faith. You’ll always regret what you didn’t do more than what you did. If you are nervous, or still going through rough uncertain patches of the disease, perhaps start by visiting more western countries, or for short trips and see how they go for you.  Good luck and safe travelling!

Guest Writer - Harriet

To say I was flattered to be asked to write for Me and IBD would be an understatement.

When I began my blog in January of this year, I wasn’t expecting hardly anyone to read it – let alone have over 15,000 views in a few months and now have a registered website! Thank you, one and all!

I had toyed with the idea of starting a blog for a few months, as I wanted an additional outlet for me and my Crohn’s. So the lead up to my biggest op to date seemed like a perfect opportunity to get online and get writing…

Bloated Medley

Which brings me nicely to my topic of choice for my guest post: my bloat.

But in more general terms, I suppose it’s looking at weight and Crohn’s – as no one wants to read about my plonker of a stomach the whole way through!

If you’ve happened to stumble across my blog already, you may have noticed that I have quite the problem post-op, with what I refer to as my flamonge: it is the overly rotund part of my stomach that doctors believe is due to an abdominal fistula.

I’m still under investigation with it all and I imagine it will only end up leading to another operation and maybe even an ileostomy. Ho hum. Such is life and all that.

But regardless of what’s happening on my insides, it’s my outsides that seem to be getting the most attention; mainly from strangers, most of them thinking I’m pregnant. I’m not. I’m just a female with a round stomach that’s completely disproportionate to the rest of my body. Easy mistake to make, I guess!

I seem to have always had a problem with bloating, but I guess I had so many other things happening with regards to my Crohn’s, it essentially took a back seat. Except this time it’s for a particular reason and it’s out of control…it’s so frustrating. But on the plus side at least they can pinpoint why it’s gone nuts…?

Skinny Malinky!

My body has fluctuated in weight a ridiculous amount since my official journey with Crohn’s began, (by official, I mean after diagnosis). At my lightest, I was around 7 stone and super thin. When I look back at pictures it makes me sad, as I know at that time I was so confused about what was happening to me and what it meant for my future.

Yet I still worried about wearing tight clothes because of my bloated stomach!?!

I’d take that mini molehill over my Mount Everest any day…

Similar to other guest writers on here, I was at university, in my second year when s**t literally hit the fan. I was bombarded with a cocktail of medicines and steroids after diagnosis, and naturally this started to change the shape of my body.

It didn’t take long before I hit a healthy weight – and then it kept going. Don’t get me wrong, I’ve never been ‘obese’ but my BMI for my 5’3” frame is currently classed as ‘overweight’; I should not have hit just under 11 stone in recent years.

The reason why I wanted to talk about weight in my guest post, is because losing weight is a

The 'Human Weeble'

common symptom of Crohn’s; I’ve had first-hand experience of this. But I’ve also had first-hand experience of ballooning due to meds, and then never being able to shift weight.

For one of my posts on my blog, I decided to look into it, as surely I’m not the only person having to deal with this weight conundrum?!

And it appears I’m not.

There is almost a subculture of Crohnies who really struggle to lose weight and don’t know why. I find it quite interesting as I was always warned off dieting by my consultants as you can lose weight so quickly.

WELL IT HASN’T HAPPENED TO ME IN A LONG TIME! *weeps into the keyboard*

It got to the point where I basically started morphing into a human weeble; bloat included. And I only have a small head – my bodily proportions are so off key!

There doesn’t seem to be much out there for how to intentionally lose weight with an IBD. However I did read on Livestrong.com that in 2010 the American College of Gastroenterology recognised that more people with these conditions (e.g. Crohn’s) are experiencing problems with being overweight and obesity than formerly realised. Research is ongoing to find the reason, but it seems it’s to do with the metabolism slowing right down, which makes it difficult to shift the weight.

Me, Now

So what do I do? I make a conscious effort to eat well, and although I would love to exercise more it is pretty tough when I’m still post-op and Ms Sleepy all the time.

My only hope is that whatever happens with my flamonge, it will kick start some weight loss and let me get back to my day-to-day life. I just want to feel more like myself again – it’s been too long! 

To keep up to date with me and my Crohn’s, you can visit Harrietsgotcrohns.com