This seems to be a question that I am asking over and over again but I’m yet to find the answer. Since Jelly Bean’s last episode in January, things were going well whilst we kept his medication at the level of him basically having runny poops all of the time. He would only pass one large poop a day so it wasn’t like he had diarrhoea and he kept telling me that he was “a happy boy now my tummy doesn’t hurt”. He started to use his potty each night after teatime and we had the success of a few wees and a few poops in the potty. Each time we did a happy dance, lots of cheering and stickers on his chart plus a Thomas & Friends Mini character if he did a poop for extra encouragement.
The Consultant at the hospital had told me that I needed to keep his bowels loose for a few weeks and then very gradually reduce his medication so that his poop was a tiny bit firmer but still easy enough to push out. I began to reduce his meds about 2 weeks ago, just dropping the 3 x 5ml doses per day to 3 x 4ml doses per day. Within a week he had started to withhold his poop again. He told me “I don’t want to” and “I don’t like it”. I put his meds straight back up to the full dose and thankfully within two days, he passed a sizeable poop at home with tears and a further two very large ones at preschool, again with lots of tears. That was last Tuesday, the last time that he pooped.
On Tuesday last week I contacted our GP Surgery and asked for a repeat order of his medication. His GP has STILL not processed the Consultant’s request sent in October to have his medication put on repeat, so each time I have to speak to the Dispensary and ask them to request permission from the Doctor to issue a new prescription. I am getting seriously annoyed with our GP.
Unfortunately I wasn’t able to collect the prescription until Saturday and by the time I got to the Surgery it was closed so I had to wait until yesterday morning to pick it up. In the meantime, Jelly Bean had taken the last of his medication on Sunday. Not to worry I thought, I will pick up his prescription first thing in the morning and then he will be on track for his next dose.
I arrived at the surgery at 9.05am and took it to the Pharmacy where I was told they didn’t have it in stock. It took them 45 minutes to tell me this. They rang the other Pharmacy in town to see if they had it in stock, they told me they did so I said I would go and collect it straight away. The lady on the counter told me “oh I didn’t realise you wanted to go now, I will have to phone them and tell them you are going and see if that’s ok for them”????? This made no sense to me whatsoever, the other Pharmacy is less than a mile down the road so why would I not want to collect it straight away?
I arrived at the other Pharmacy a few minutes later and handed over the prescription for the lady to frown and say “we haven’t got these” to which I replied “but the other Pharmacy just rang and you said that you did?”. She said “we have the adult ones but not childrens, she didn’t say they were for a child”. Fuming didn’t quite cover my mood! “You need to go to a larger Pharmacy as they will be more likely to stock it”.
By now we were running late for a playdate we had arranged so we went to the playdate as I thought a spot of soft play and running around might help to ‘move things along’ for Jelly Bean (it didn’t in case you were wondering). Afterwards, I popped to a larger Pharmacy in a nearby town, a Boots pharmacy. They will be sure to have it!! Nope, wrong again, they didn’t have it either. By now Jelly Bean was starting to get very tired so we returned home for his afternoon nap with a plan of action to drive into Peterborough after school to try the large Boots stores there. There were three to choose from so it should be easier there.
After school we rushed over to Peterborough and the four of us (the three Beans and I) around the three LARGE Boots Stores to find that, NOPE, they didn’t have it either!!! By the time I reached the last one I could have cried. For my final attempt I decided to phone Peterborough City Hospital and ask if they would be prepared to dispense the medication for Jelly Bean as I was getting to desperate measures. After some deliberation they said that on this occasion, after having checked Jelly Bean’s records and seeing the severity of his condition they would be prepared to dispense the medication. I had to wait for 40 minutes at the hospital but it was worth it and the Dispensing Nurse was so kind and helpful. My lesson has been learnt, next time I shall order a couple of weeks before I am due to run out!!!
Today we are on day 6 of no pooping from Jelly Bean. He cries out in pain when he needs to go but refuses to push it out, saying he doesn’t want to. Fingers crossed we will be seeing his Consultant again this month. I spoke to him on the phone last Tuesday and he has said that he now wants to keep him loose for 6-12 months so that he can ‘forget’ the pain of pooping. It certainly does look like we have a long battle ahead of us. I feel at the moment we are only tackling the physical side of the issues whereas he clearly has psychological issues around it which need addressing so this doesn’t keep happening?