Self-management of IBD - My thoughts

In this article Edmund discuss his thoughts around self-managing his IBD and explains some of the ways he does this...

One thing that has become increasingly important to me over my inflammatory bowel disease (IBD) journey is that of self-management.

Before discussing what that is and what it means to me I think it is important to understand what it isn’t. It is not self-diagnosis or self-medication. I have no medical or pharmaceutical training so need people with that background to advise me on the best course of action regarding any issues I may have with my health or medication.

One thing that I can control now and in the future is how I react to how my IBD is affecting my life and the positive measures I can put in place to mitigate the impact of ulcerative colitis (UC).

When first diagnosed I didn’t take things as seriously as I should have and as far as I was popping the 28 pills I needed to take each day to keep me upright I thought that was all that I needed to do.

That said, I did have one experience of what I would term 'self-management' when I attended a talk by a hospital pharmacist at my local Crohn’s and Colitis UK group. I can’t swallow tablets of any size no matter how easy my GP thinks it should be and I was having problems taking the Asacol tablets I’d been prescribed which were the size of bullets.

The pharmacist mentioned that Asacol came in granular form so first thing on the Monday morning after that I was on the phone to my GP to get my prescription changed in future. I found this did have a small but noticeable effect on my symptoms - so this was a sensible decision to have made and one that allowed me to take a small measure of control over my symptoms.

Taking control

My “light bulb” moment in relation to self-management came while in hospital just before Christmas during a severe flare and when my immune system just collapsed. The nurses in the IBD ward insisted I kept a “poo diary” detailing how often I was going to the toilet and the consistency of what was coming out.

During the fortnight I was in hospital I must have caused the destruction of several rainforests I was getting through that much paper documenting my symptoms. However, the staff were able to track how my body was reacting to the medication they were giving me and could see what I was being given was kicking in and that I was responding to treatment.

I had been in hospital in a different one from the one where I usually saw my gastroenterologist but the resident gastro at this hospital told me to keep up my “poo diary” and to make sure I kept track of what doses of medication I was at so that as I tried to taper off the steroids in particular it could be seen what effect this was having and at what stage my symptoms were returning.

I’d only just managed to avoid having emergency surgery to chop out all the faulty bits by a whisker during this hospital stay so at that stage I was wanting to avoid a trip to the butchers if at all possible. I realised keeping this diary would certainly be a help in better understanding how my body was reacting to the various medications I was on and when things were starting to fall apart.

I can get quite OCD at times so a folded up A4 sheet of paper and a pen became ensconced in the back pocket of my trousers everywhere I went and I dutifully recorded all the gory details of my pit stops.

Sure enough, my usual gastroenterologist had been told I was keeping track of this information so when I turned up for appointments he would ask to see my diary and we’d review what it was telling us.

However, over time it became apparent from keeping track of how my symptoms changed as I was yo-yoing on and off the steroids and once I’d relapsed back into a flare, that higher and higher dosages of Prednisolone were required to get me back on track.

Discussions with the gastroenterologist over that period lead us to determine that I was becoming steroid-dependant and, in the absence of any other realistic medical treatments, surgery was the only practical option.

Once I had my dates for surgery then self-management took an important part in the run-up as I had to keep myself reasonably well and try to avoid getting into a flare so that the surgery could go ahead.

I was also having to come off the immune-suppressants for two months before my immune system would be up to the demands of surgery so I had to make sure I didn’t get any colds or infections in that time - which during February and March in Scotland is exceedingly difficult!

In between my operations self-management moved onto keeping myself as active as possible to facilitate the recovery process but at the same time knowing when to take it easy.

I went back to work six weeks after my first operation and a fortnight after my second which was, with hindsight, too early given the state I was in.

I was getting cabin fever so the prospect of shuffling numbers around spreadsheets was more appealing than staying at home all day.

However, as it turned out, even going back to a desk job is much more tiring than “normal” after you had quite serious surgery but at the time it seemed like a good idea.

Now, more than two years after being reconnected self-management is very much an important part of my ongoing situation. Since I still suffer from chronic fatigue as a result of being in surgical remission from UC primarily self-management is now about knowing when I am to push myself to do more things than I had intended or harder than planned at the gym and when I need to just rest.

Working Monday to Friday I generally won’t plan to do anything on a Saturday morning and use that time to catch up on some of the sleep I don’t get during the week. No doubt some “experts” will says that is the wrong approach to take but it works for me.

Also, unless it is really important, I try not to have more than a couple of days in a row where I am out and about for more than around 12 hours a days as this will catch up with me at some point.

Self-management doesn’t need to be complicated either. Sometimes something as simple as having a nice hot bath to soothe the aches and pains that come with IBD can be just what is needed to get yourself back on track.

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I have pancolits and in 2014 had restorative proctocolectomy with ileo-anal pouch (J-pouch) surgery.

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