This disease has you constantly trying to figure out what it is going to do next!
The prunes worked for a few days and then they stopped ‘helping’ the poop come…so back to irrigations ‘as needed’. ‘As needed’ should mean if he does not poop in 24 hrs…however most days he poops 1-3x; BUT I think the quantity is not enough…even IF he has 2 poops they still do not total one ‘big’ poop….so that means we have to irrigate.
Irrigation is a bit involved. There are alot of supplies and you really need two sets of hands. A catheter gets put up 6 inches and you use a syringe to shoot up 10 cc’s of saline. Then let the saline + poop run out into a basin (that Joey Coop is trying to kick, grab, roll onto), do that 10x (to equal 100 cc’s). If the liquid coming out is still poopy then repeat w/ another 100 cc’s…so it takes quite some time. Luckily we have not had to get into the habit of doing this everyday but have had to do it 1-3x per week for the past couple weeks.
Went to our local surgeon today who was not answering my questions and was talking about his ’bout w/ enterocolitis’…..what bout is he talking about???? He then proceeds to tell me that the explosive poop that happened at the 2 month visit was the beginnings of enterocolitis- but he never told that to me then and our Cinci surgeon has not mentioned that at all…so then I leave the visit feeling more confused.
The only clarity I got was when he explained one reason why he may not be pooping enough (and again this is only a MAYBE- bec. no one knows the reasons to alot of the HD questions). The old rectum was not working so now a new one has been brought down (pulled through) and attached to sphincter. However the new rectum and old sphincter (which is not affected by HD) do not communicate; so the sphincter stays ‘closed’ all the time and hard for JC to push out poop through closed sphincter. So that is why we dialate to stretch out the sphincter and get it to open more easily when JC needs it to.
All and all I am not too happy w/ the local surgeon and don’t know what to do since he is highly recommended by Cinci surgeon. Will give it another visit and then re-assess.
The one thing I am getting better at is reading my son. It is getting to be pretty obvious when he needs irrigation. I am sure Joe is happy about that because I have now woken him up twice at midnight to tell him we gotta go downstairs and irrigate our boy!!!!
Going back to one day at a time. I am getting overwhelmed (AGAIN!) by all the ‘what if’.
If you have gotten this far- thanks for reading and for visiting the blog!!