Introducing Myself - My Story

[Bonzo]

Hi Everyone,

I'm Neil, I'm 27 years old and I've just registered on the forum.

My story goes all the way back to 2001 when I was at Uni and living in Bristol. I'd been having symptoms for some time, but they were quite mild and I was a bit scared about seeing a doctor. Eventually, with the persuasion of a mate, I made an appointment, and a couple of months later had been referred to a specialist and was awaiting my first colonoscopy. The outcome of that was inconclusive, however they did suspect Crohn's disease. I remained under a specialist, only occasionally suffering from mild symptoms.

By the end of 2006 things had changed quite a bit. I was living back in my native West Yorkshire, where I still am today, and under a new specialist. The symptoms had started to become more frequent and to some extents, more painful.

The specialist sent me for a colonoscopy, a small bowel meal and a barium enema. Now the first two I can cope with, but the enema was a horrible experience and one that I never want to have to go through again - it's probably not news to anybody that's had one but the first 10 mins or so after you leave the table, you just want to flush yourself down the toilet and end it all. The results of that were conclusive though and proved there was a narrowing in my terminal ileum and therefore it was definitely Crohn's disease.

The specialist suggested operating to remove the affected area, because my age and general health meant I'd be able to recover easier and more quickly than I probably would should it need to be done in future. I argued that this wasn't a great option because Crohn's can return at the join within two years, even though in some cases it can be much longer than this. She's spoken about drugs that could control it, so that was the option I wanted to explore.

The specialist decided to put me on Azathioprine, which, after about a month of sheer hell, suffering from all kinds of weird side effects, began to work and I still take them now without any trouble. However at the end of 2007, just as everything was looking better, a routine blood test showed a poor liver profile. I was referred for an ultrasound scan on my liver and the results showed it was fatty.

I weighed 13st 8lbs at that point and as a result changed my diet and seriously stepped up my physical recreation (which was pretty good to start with). I got my weight down to just over 12st and by last summer I felt better than ever, and my blood test results and liver returned to normal.

I picked up a chest infection and cough in October last year which took me until Christmas to shake off completely. This has had an effect on my diet, training and weight so I'm now trying to put that right again.

I think in general though, compared to some people I know that also suffer from Crohn's, I am very fortunate. I've never had to stay in hospital or go on steroids; I haven't really had that much time off work with it either. It's still there though and it can be painful and irritating at times, and there's no guarantee that it won't get worse in future. I'm still learning about what makes my body react even after all this time, and I'm not sure there are many right or wrong answers. I'd be interested to hear if anyone can relate to my story though and if they have their own thoughts to add.

Cheers,

Neil

 

[MINI Cooper]

Welcome to the forum!
I'm glad you decided not to have surgery and that you found drugs
that worked for you. I've been on various drugs, as well as steroids. One
of the ones I am on is also azathioprine.
I hope you can continue to dodge the steroids, hospital stays and operating room!
One question for you, did you get the cough as a side effect from the azathioprine?
Once again, welcome!

 

[jed]

welcome to the forums!

 

[Agent X20]

Welcome to the forum, Neil

I've been on Azathioprine for nearly two years now and had some very positive effects from it. I did have an upper respiratory tract infection a year ago... but that's been an annual event for the last few years. Fingers crossed I don't get it this year!

 

[Bonzo]

One question for you, did you get the cough as a side effect from the azathioprine?

I'm not sure, but it something that always seems to strike me down around that time of year, which is something a few of my friends commented on this time around. I went to the doctors and to see my specialist to ask that very question though, given that Azathioprine is an immunosuppressant but they felt that the tablets weren't a factor.

My dosage is 150mg per day (spread out as 3x50mg). I was previously on Pentasa and taking 2g twice a day - they're horrible tablets to take and I was glad to come off them a couple of months after I started taking Azathioprine.

My working theory at the moment relates to diet. I knew that Crohn's could reduce your body's ability to absorb iron, but I didn't know this was also true of zinc - a key mineral in maintaining a healthy immune system. I've thought about taking zinc tablets but haven't gone that far yet.

If I'm in a situation where I still occasionally get symptoms, does this mean my meds aren't working properly? Because generally I feel fine, but I'm sometimes pretty tired. I can usually attribute symptoms to something like extreme stress or eating the wrong thing.

 

[Cookie]

Hi Neil...Welcome to the forum. Your story has many parallels to mine. I, too, have managed to avoid steroids, hospitals and surgeries (aside from an out-patient surgery for an advanced flap repair on a fistula) and have been taking aziothioprene as well. My crohn's can probably be catagorized as mild except that I have chronic problems with fisulas (further explained in my thread " Got rectovaginal fistula?", although I'm sure you don't have one of those!). I have had a persistant cough/respiratory infection for almost three months. I have never considered that the cough is a side effect of the meds, rather, I have assumed that the immunosuppresants are the reason I can't shake it.

I also think that paying attention to my body has helped me a lot. I don't get many mega-flares, but I have noticed that I have less pain and more regular bowel movements when I keep my body in a routine. I try to avoid dairy as much as possible, I try to go to bed at the same time every night, wake up at the same time every day and eat my meals at the same time. My body really responds to this, believe it or not.

You mentioned your physical training in your post and that was something I was really curious about. I have been an avid runner for many years. Since being diagnosed with crohn's 6 years ago, my training can beat be described as a serious roller coaster ride. I have managed to complete two half-marathons and a tri-athalon during that time, but there have been times (like right now) when I am certain I could not run a mile if I tried. I have noticed that I do better in general when I am exercising, but if I push myself too hard, I end up with a flare that starts me into a downward spiral. I have never really found a happy medium. So I am curious, have you (or anyone else) been able to establish a link between physical activity and crohn's?

 

[Bonzo]

You mentioned your physical training in your post and that was something I was really curious about. I have been an avid runner for many years. Since being diagnosed with crohn's 6 years ago, my training can beat be described as a serious roller coaster ride. I have managed to complete two half-marathons and a tri-athalon during that time, but there have been times (like right now) when I am certain I could not run a mile if I tried. I have noticed that I do better in general when I am exercising, but if I push myself too hard, I end up with a flare that starts me into a downward spiral. I have never really found a happy medium. So I am curious, have you (or anyone else) been able to establish a link between physical activity and crohn's?

After I'd got used to taking Azathioprine I went on a mission to improve my fitness. It wasn't bad to start with, but I'm a Rugby League match official and thought I could benefit from a better fitness level.

As my fitness improved, I started to feel better and better, both physically and mentally and if anything it's been when I've let my fitness slip that I've been more prone to symptoms. Sometimes though I really do have to drag myself to the gym, and sometimes in a session I simply can't get into it. I usually manage to push through this though and feel better for having done so afterwards.

I tend not to run very often - I stick to spinning, cross-trainers, rowers and resistence weights; only running when I'm doing a rugby match. The reason for this though is because when I run on roads, tarmac or tracks; i get pain all across the bottom of my back, and down the backs of the lower half of my legs. I went for a run today and had it worse than ever - I had to stop frequently because of the pain and ended up walking the last half mile or so because my feet were numb and I was getting stabbing pains in my calves. I've been to the doctors about this and she suspected it might be connected to Crohn's, however all the tests she's had done on me have come back normal. I'm now being referred for physiotherapy, so hopefully that'll give me some answers.

This can be extremely frustrating because keeping fit has been my way of beating Crohn's. Funnily enough when I'm doing a rugby match and I'm on grass, I'm generally ok.

So to go back to the original question, I've really only seen positive effects from training and actually feel worse when I'm unable to train regularly. If only I could overcome this pain so that I can go jogging as part of my regime.