“Out of difficulties grow miracles” – Jean de La Breyere

stormyThese last few months have been, well, interesting; and yes, that’s one of those euphemisms you use when you really don’t know how else to explain what’s been going on.  In many ways life was reduced to a whole new level of hell in our household; one that I’ve hesitated to discuss because of the nature of our experience.  Sometimes I need to delay publishing my posts to give us all time to process what we were dealing with before revealing it to the outside world, to allow the storm to pass and to let those memories start to fade.  Now, I’m – we’re – finally ready.

The reason for it all has been M’s ongoing issues with his bowel.  When the pellet study was done a year ago at our local hospital, the x-rays indicated that he had developed what is termed “mega-rectum” and “mega-colon“, caused in all likelihood by ongoing and previously undiagnosed impaction.  The priority at the time was to clear out his system and keep it clear, but unfortunately, for reasons still unknown, M has limped from one bout of constipation to another over the last 15 months.  The constant flow of problems has taken its toll on the whole family, but most noticeably on M, who is finding it tough to be positive when he feels that nothing is making a difference.

Our first meeting with our local consultant led to a long discussion about what, if anything, we could do to try and ease this problem and how we could help M’s bowel to recover.  He suggested a course of treatment that sounded extreme, but which he felt would encourage this troublesome body part to start to repair and would therefore hopefully alleviate some of the issues.  He proposed starting M on yet another laxative, called Bisacodyl, which would be administered by a daily suppository each evening.  This would cause an immediate response, thus reducing the likelihood of ongoing impaction and hopefully M’s bowel muscles would eventually recover some of their elasticity.  This treatment was not to be a long-term one and we would start doing it daily for just 4-5 weeks before being assessed in clinic again.

willowtreeOf all the medicines that M has endured over the last 3 years, this is, by far and away, the worst one we’ve had to put him through.  Day 1 was tricky as he was incredibly nervous and had no idea what to expect.  The subsequent week was hell and the nightly battles as I gave my boy this medicine accompanied by his incessant crying and pleading took an almighty toll on the family.  Job being done, a nightly cuddle was needed to reassure and comfort us all.  Due to unexpected problems during that first week, M experienced a heavy bleed and we were advised to take a week’s rest before restarting and finishing the course of treatment.  Unsurprisingly that was even more difficult to do, in fact almost impossible, but we persevered and carried on until our next appointment.

Mike and M had their hopes pinned on the medicine stopping then, I was slightly more sceptical and sadly I was proved right.  There had not been sufficient progress in that 5 week period for our new consultant to be satisfied and he wanted us to keep going until the start of the school holidays.  At that point, he asked us to double the dosage, administering the medicine both morning and evening until we flew to Florida.  I think that everybody’s heart sank at that point, although M cheerfully focused on his idea of a silver lining – he got to stop taking the Senakot, which was his least favourite medicine and that it would all stop as soon as we got to Florida.  How we got through those 8 weeks, I really don’t know and I hate knowing that we might be told to restart the medicine again in the future.  Worst of all, we won’t know whether this treatment has been of any help for a while yet, which is discouraging, but we will continue to keep our fingers crossed and hope that out of that difficult time, we really will start to see small miracles grow.

hope

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One thought on ““Out of difficulties grow miracles” – Jean de La Breyere

  1. Pingback: Busy days | 7 years to diagnosis

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