tight sphincter, back to dilation

Our nights have gotten so so so bad. Joey Cooper calling out for me every 10-20 min, crying, moaning, obviously uncomfortable/in pain. Nothing we do seems to help, and we have tried everything….so a trip to the surgeon.

It brings us some relief, because we get an answer as to why he is so uncomfie. His sphincter muscle is tight so he has a hard time passing ‘everything’ (and always been gassy at night)…he can do it and seems to be pooping fine/enough but even during the day we see him up on his tippy toes whining/quick cry and right back to playing. Anyway very long story short. We now had to consult w/ our surgeon in Cinci and of course we had to different ‘treatment’ options. Our surgeon here recommended topical antiob. oint for 6 weeks and if fissures (anal tears caused by tightness) don’t resolve then they do a shot of botox (yes, I just typed BOTOX) to paralyze muscle, fissures will heal…temporary fix and I am not really sure how we ‘fix’ it long term bec. surgeon did not want to get ahead.

Cinci surgeon recommended resuming dilations (back to a size 12- for HD families who are interested) 1x per day for 3 months (we go back up to size 13 when it passes easily). Also he has really been wanting us on a laxative (Little Tummies senna) + pectin regimen.

The surgeon here was not for dilation due to the pain involved and possible witholding by JC. :(

So after much discussion of course we went w/ the expert in Cinci and we are back to dilating, lax, pectin AND it MUST be helping because we are actually getting some sleep!!!!!!!!!!!! When I tell you we were lucky to get 4 hours of broken sleep per night I mean it; four hours was a good night for us; so to be sleeping through the night or just having him up 1x is AWESOME!!!!!!!!!!!!!!!!!

It has only been a few days so who knows….and the dilation is not fun. I am hopeful that very soon it will begin to pass w/ less pain as it did when we first started dilating back in July.

So keep your fingers crossed for dilations to work, sleep to continue, and fissures to heal. Also of course I am hoping that he is only on the lax short term, but I know I might have to let that one go- it is still messing w/ my mind though.

If you got this far THANKS for reading!

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3 thoughts on “tight sphincter, back to dilation

  1. Hi Joey Coop and family!

    I was literally just thinking of you all this evening as little Keaton sat on the potty. I am so glad that things have hopefully taken a turn for the better. Dear Joey, I know that the dilitations cannot be easy on your or you parents, but as they seem to be helping – Hang in There! You are one strong and touch kiddo. You all are amazing and we think of you often. Thanks so much for the wonderful pictures and updates. Hooray for sleep! What a wonderful thing.
    Sarah and fam

  2. I was glad to come across your site I am glad to see your son is doing well. Our son Owen has HD and he is 2 months old. It’s a little crazy out here not knowing what in the world is going on so I love it when I find a site that has great stories about there journey it really helps make things seem okay.

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