48 hours post botox

We are now 48 hours post botox............
Not your standard kinda botox.......
Let's start at the beginning!
Pops is 11, for as long as I can remember she has had an issue with her bowels. She still has to wear nappies as she has a constant stream of poo coming out of her. Now bowel issues aren't uncommon in children with autism. It was initially thought she was withholding her bowels and we had years of toilet therapy to help her, but that wasn't the problem. 

In August last year, she spent 10 days as an inpatient in hospital having her bowel emptied. The doctors presumed her bowel was blocked so manually emptied it. She had to drink 2 litres of klean prep per day for her entire stay. During the whole 10 days, we saw a lot of poo, but nowhere near what the doctors were expecting. This proved there was no bowel blockage, which is what I told them in the first place.



Following this she was given a bowel transit study, she took 3 tablets that contained tiny electrodes over the course of a week and then we went for daily x rays to see where the electrodes were in her bowel/intestines. This showed that she has a slow digestive transit. She has tried a variety of different medications to speed it up but we didn't find one that worked. She was also trialled with a device called peristeen. This was basically a pipe up the bum used to flush the poo out. She wouldn't tolerate this and I can't say I blame her! I wouldn't fancy having a hose stuck up my bum twice a day and having to sit on the toilet for an hour afterwards. We had now exhausted all the options through our local paediatric department and were referred to a gastro specialist at the children's hospital. Their opinion turned out to be that Pops had lost control of her rectum and a course of Botox would reactivate the muscle and she would have control of her bowel again. I was dubious as I have always been unsure a loose bowel is what was causing all her issues. But the specialist explained that in children like her there is a 50/50 chance of the Botox working. The next step would be a colostomy bag, so we had nothing to lose by giving it a go. She went in Christmas week for a day stay to have her procedure. She was down in theatre for about 40 minutes all in all and was furious when they woke her up in recovery.

The specialist told us the results would be instant, but we will definitely know within 2 weeks whether it worked or not. We are now over a week past her procedure and after no poo at all, we are now in the same position as we were before. We go back to see the specialist mid-January and it's looking likely that we will be discussing colostomy bag surgery.

We are very aware of what a big life change this will be for her, but on the other hand, we are thinking of the life quality she has now that her bowels are holding back. She can't go swimming, she cant wear what she wants to due to the big bulky nappies she has to wear, she can't use the toilet independently as she always needs cleaning up. The colostomy will give her some much more freedom and independence. We will know for sure in January, but no matter what we will get the final answer and its been a long time coming, especially for Pops!
Thanks For Reading
Mandy
xx

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