Dale’s Personal Blog

Many of my friends, family and colleagues are aware of my living with a condition known as ‘ulcerative colitis’ for a while now. This is a disease which many believe to be ‘autoimmune’ in nature, which basically means the immune system decides to attack a part of your own body, in this case, the large intestine (otherwise known as the colon or bowel). The end result is inflammation within the digestive system, which causes a range of debilitating symptoms that I’ll come onto in a minute.

For many, this is probably too much information already, and apologies to those who find talk of such things uncomfortable. However, it is precisely because conditions such as this are often awkward to discuss in the normal course of things that I wanted to provide some insight for those that know I have been struggling somewhat with daily life since last summer, but are not sure exactly why.

There is a wealth of information and gory detail available on the Web for those who are interested in the medical and technical aspects of ulcerative colitis, and I’ll leave you to do your own searches if you want to drill into the specifics. More pertinent, however, is the effect the disease, which is genetic in origin, has on the lives of the estimated 35-100 people in every 100,000 that suffer from it.

Firstly, there is the effect of the condition itself, which when it ‘flares up’, can severely restrict the degree to which the sufferer can get around. This is no small part down to the need for frequent visits to the loo – in my case up to 20 times a day during a bad period. To illustrate the impact of this, imagine planning a business day out around the availability and proximity of public conveniences. On one of my routine trips into London, for example, I would need to make sure I got a seat near the loo on the two hour train journey, had change in my pocket so I could quickly get into the gents toilet at Waterloo station when I arrived, then plot my course to the meeting based on facilities available along the way (typically in hotels) that I knew I could nip into as necessary.

And during the meeting itself, there is the problem of feeling rotten, partly because the condition puts the body as a whole out of whack, but also due to lack of sleep as a result of having to get up so often in the night. The added distraction of knowing the ‘urge to go’ could (and often does) hit at any time doesn’t help. There’s then the complication of knowing that eating anything will just make things worse, meaning it’s necessary to politely decline invitations to lunch or a quick drink before heading back to avoid difficult situations.

As you can imagine, there comes a point when it’s not worth the hassle of going out, so you end up doing as much as possible over the phone and via web conferencing, which at least I had the choice of, given the work I do.

The good news is that many afflicted with ulcerative colitis only suffer flare-ups periodically and can get on with their lives as normal in between times. The condition can also often be tamed through the smart use of medication – steroids to get flare ups under control, and other drugs to reduce the likelihood of them occurring in the first place.

The bad news for some (including me), however, is that continuous high doses of treatment can be necessary, and this, in turn, can lead to side effects that are at least as unpleasant and disruptive as the condition itself. In my case, the impact of the medication ranged from nausea and sickness that would often take me out for whole days a time, to more continuous effects such as loss of concentration, mood swings, vision impairment, etc, that just hampered my life in general. With extended use of steroids in particular, there is then the worry of longer term bone damage. The term ‘caught between a rock and a hard place’ felt very apt for a while.

Which brings me on to my gastro-intestinal reengineering project.

As it turns out, the offending part of the body, your colon, is something you can actually live without, so removing it generally equates to a cure for ulcerative colitis. In February 2009, when the medical team looking after me at Southampton General Hospital noted that none of the preventative drugs I had tried were working and even high doses of steroid treatment were not bringing my latest flare-up under control, the surgical option came into pretty sharp focus. The choice was to ramp up the steroids even further, and if stability could be achieved, try some of the more evil and toxic preventative medication (with no guarantee of success), or call time and go for the chop. The medics made it very clear what they recommended, to the point where, based on my then current condition, they were willing to accelerate the process and admit me to hospital as an emergency case.

And so the reengineering project began with a operation known as a ‘colectomy’, which took place on Feb 28th, 2009 with 24hrs notice – a little over two weeks ago at the time of writing. As a result, I no longer have a large intestine and my plumbing has been rearranged to temporarily redirect waste products to a sneaky little bag arrangement that I wear on my side. Inconvenient though this is, it is a small price to pay to get my life back, which, even this soon after the surgery, I am already starting to do.

I refer to the exercise as a project, however, because another couple of operations are involved in the overall reengineering process. The first involves some sophisticated surgery which repurposes a segment of the small intestine into a structure that replaces the large intestine from a mechanical perspective. This is likely to take place towards the end of this year when my system has recovered fully from the effects of the drugs – necessarily to avoid complications. Once the new structure is fully healed and robust, the final operation is used to connect everything back up, and assuming it all goes to plan, my digestive system will once again function pretty much like everyone else’s.

So, while it all sounds very involved, and it will probably be a year or so before all of the work is complete, the big difference with the course I am on now is that I once again have an element of predictability and control. I am hoping to be properly back at work over the next month or so without all of the previous constraints and distractions. More importantly, I can get back to leading a normal life in general from a personal and family perspective. Having largely missed last Summer and the Christmas holiday period due to illness, this is something I am very much looking forward to.

Finally, I would like to take this opportunity to thank all of those who have been so understanding over the past 6-8 months in particular, with a special thanks to my wife Helen who has supported me throughout, and Jon Collins and the team at Freeform Dynamics who have covered for me and made sure our business has continued to run smoothly.