Potty training is not fun

About three weeks ago, after some emails back and forth with Peter's surgeon and the wound care nurse, we started using a baby bottle nipple in the stoma of the ileostomy to help divert poop back down the colon instead of out the stoma.  The stoma still allows a good deal of stool to exit into the ostomy bag, but about 200 ml of stool does get diverted down through the colon with the bottle nipple in place.  The bottle nipple is place in by inserting the tip into the stoma, with the part that would touch the bottle sticking out.  This is placed inside the ostomy bag, and then an abdominal binder is placed over that to keep the nipple from popping back out of the stoma.  It has worked fairly well in that he can still use the stoma as an emergency exit for stool, but it does have its limitations.  For one, the stool from the bag smells horrible, like the plastic material that the nipple is reacting some to the stool.  I can't see any visible problem, and I do put in a new nipple often.  If I leave the nipple out, the smell goes away, so I don't think it is an issue with the stool itself.  The other issue is that the binder then limits how much stool and gas can be contained in the ostomy bag.  The binder basically compresses the entire bag so there is room for only about 1/3 of the bag's usual capacity.  This means there are more trips to empty the bag of gas/stool, as well as more leaks of the bag if I don't get it emptied soon enough.  We tried a leg bag attached to the ostomy bag to give some more room, but the stool is also very thick and doesn't go down freely, so it didn't help.

Aside from those complaints, what we have determined is that the colon works very well at concentrating stool and making formed poop.  This is great news, and what we expected, but had not been able to actually determine up until now.

Peter is having a terrible time learning to use the potty for stool.  He has been potty trained with urine for a couple of years now, but he does not like using the potty for stool.  In fact, he does not like making stool rectally at all, and we are battling that now.  After the surgeries last month, he would yell and carry on, jumping up and down trying to not go to the bathroom and just having little bits come out in his diaper.  I thought that would clear up once we got home, but it basically has not.  We have major bribes going on to get him to go on the potty, but he gets on there and gets frustrated.  He says he doesn't like the feeling of going poop rectally, but that it doesn't hurt.  He is getting a tiny bit better at going in his diaper without quite as much carrying on, but that is only sometimes.  Chris is going to give potty training a shot this weekend to see if he can get Peter to go on the potty.   I think the more he holds in rectally, the more backs out the ileostomy, so it would help so much if he would just let it out.. potty or diaper.

Peter has always been very dramatic with learning things that have been physically challenging or scary to him.  When he learned to sit up sometime around 17 months old, he screamed as we would sit him up or prop him up.  Once he mastered sitting, no more yelling about it.  Then he did the same screaming learning how to stand.  Once he could stand well, no more yelling about that either.  This went on with walking, crawling (which he learned after walking), playing at the playground, riding a bike, swinging, etc.  I often wondered what the neighbors thought about his screaming, wondering if they thought we were hurting him, as what child is that afraid of learning so many new things?!  Anyway, I do believe he is screaming more out of fear of this unknown/foreign feeling than out of pain, as he doesn't act like he is in pain and doesn't complain of pain.  I so much look forward to his mastery of going potty and more peace in the house!  This yelling goes on one to several times a day and can get quite time consuming and frustrating for all of us.

On to some more pleasant news, Peter is getting a night off TPN tonight.  He has been on TPN 7 nights a week since his surgeries, to help with wound healing and to give him a little extra beefing up for the next surgery.  I sure do miss the freedom we had of being on TPN only 4 nights a week before the surgery.  Getting the TPN set up takes about 20 minutes, which isn't so bad, although it it so nice NOT having to set it up when there have been nights off.  The biggest problem of it is getting up twice during the night to change over the Omegaven bottle.  Last night I was up 5 times between the Omegaven pump, Peter having to go pee-pee, his little brother having to go pee-pee, and the feeding pump going off because the enteral feeding tube had kinked.  Chris has offered to get up to change over the Omegaven, but he does not fall back asleep easily whereas I do, so I don't think that is a good option.  Getting Peter off TPN is the better option.  To do that, he needs to get the ostomy closed so he can use the rest of his bowel for food absorption.  To get the ostomy closed, he needs to make poop rectally and keep that colon in use so it gets bigger in diameter and we no longer need the emergency exit through the ostomy. 

I never counted on Peter refusing to poop when we talked about getting the colon reconnected.  It is funny in a way, but I am sure we will find more humor in it at some point later in life once he is past this point.