This summer has not been the sunny, fun-filled and relaxing one we were hoping for. This summer has thrown up a few unexpected bumps in the road which we’ve had to negotiate whilst trying to hang on to our sanity. This summer has had its highs and its lows, but we’ve got there in the end and have lived to tell the tale, just.
I haven’t been able to share the truth about this summer before now because this summer has been incredibly hard on M. It is only now that we are through the worst and have a plan of action, that I feel able to talk about it. I have made numerous phone-calls to GOSH to try and reach a place that has left us all feeling reassured and relatively happy.
At the beginning of July, M had an abdominal x-ray as well as starting on his new medicine, Nalcrom, but we had seen no improvement for him. To my complete surprise, the x-ray showed that M was chronically constipated and impacted all the way from his colon to his rectum. The first thing to tackle was clearing his system out, thereby giving him a fighting chance to recover the toileting improvements that he’d experienced at the start of the year.
This meant the return of our old friend, Movicol, a softening laxative that enables the body to better pass the stools without too much pain. We had used it when G was struggling with her own gastro difficulties, but the intervening 3 or 4 years had rendered my memory somewhat hazy as to how to manage this medicine. However, for once I felt confident that I knew what I was dealing with.
The plan was to embark on a routine that would see M taking an increasing dose of Movicol to enable the fecal impaction to be cleared from his body. Once this happened, he would need to continue on a maintenance level to keep his system moving until our next appointment at GOSH in October. Whilst this may sound easy enough, at the maximum level we were asking M to drink an extra 500mls of medicine a day and one that he hated taking and it was a struggle every step of the way.
The downside was that, whilst on the increased dosage, M would suffer from even more chronic diarrhoea until the blockage was out and I knew that he would really struggle with this proposal. Just imagine the horror of being an active 7 year-old boy with minimal control of your bowels and a fear that someone might find out and make fun of you.
On the flipside, the advantage of being in the summer holidays was that we could tackle the problem thoroughly and hopefully resolve it fully before M starts at his new school in September. I suggested to M that for the relatively short time he was on the medicine he returned to wearing a pull-up. This would solve any embarrassing incidents whilst we were out and about during the summer and would give him the reassurance that other people wouldn’t know when he soiled himself. He reluctantly agreed, being obviously torn between the nightmare of wearing pull-ups as a 7 year old and that of being unable to control his bowel when in public.
The first 14 days were hell, but the medicine did its thing and progress seemed to have been made. He struggled to cope and his fears of discovery and frustrations about his toileting spilled over into his day-to-day behaviour and those of us closest, Mike, G and me, suffered the consequences. He and I spent time together, seeing who could shout out louder and rant and rave more about how unfair the situation was. M needed to scream out the tension because it was unfair. Unfair that my beautiful, bright 7 year old was once again subject to the fraility of his body and couldn’t be like all of his friends. Unfair that I had to hold him sobbing once more because he just couldn’t understand why all this was happening to him and didn’t know how to cope. Unfair that the one person in the world who should be able to make it all better (me), couldn’t guarantee that there was an end in sight. His one over-riding fear was that he would need to continue to wear the pull-ups when he went back to school. The hardest thing for me was not being able to reassure him 100% that that wouldn’t be the case. We hope it won’t be for his sake, but as I’ve quickly learned, there are no guarantees especially when it comes to this condition.
Unfortunately, despite the promising start, we discovered blood in a number of his stools as well as mucous, both of which are an indicator of intestinal damage. Having a plan in place, even if contains new tests and possibly more medicines, means that I know we will get to the point of some answers, although they might not be as conclusive as we would want.