Today was an amazing day – we learned more about Gannon today than we have in a long time.
Gannon has not been back to his normal self in…a long time. There was COVID, then the 13 days of vomiting, then this week brought the worst, most painful bowel movements Gannon has ever had. He spent a full 24 hours either in the fetal position or screaming and straining to have a bowel movement or he was just so clingy and fussy – straining so hard his eyes rolled back in his head for a minute. It was the worst we have ever dealt with. Mom and I and Gannon were all crying. I had enough.
I called Iowa City and I called our old GI doctor at Milwaukee. Something has got to give after nearly a month of misery. Our Milwaukee doctor got back to me first – he told me several things:
- A normal genetic test does not rule out a connective tissue disorder. Up to 30% of kiddos with Ehlers Danlos Syndrome test negative for the condition.
- He is leaving Children’s of Wisconsin next week. He is going to launch a new motility practice (I think in Chicago) and we are welcome to see him there.
- Gannon needs an X-ray when he has trouble pooping. He needs an X-ray to see how backed up he is, then he needs to be aggressively “cleaned out” to give us a fresh start. Then he needs a follow up X-ray to confirm he is cleaned out. THEN start the bowel regime back up (Miralax BID and Senna daily). Give it a month, keep a diary of his poops and meds and symptoms. He recommend the clean out is done under close supervision and said if we lived closer he would bring Gannon into the hospital to do the clean out.
- If Gannon is STILL having problems, he needs to go to a motility specialist again. He needs to get Botox again, it needs time to work (2 weeks) and then he needs to be fully cleaned out again and have the anorectal manometry again to see if the Botox works. If it doesn’t work, Gannon needs to be referred on to either Nationwide in Columbus, Ohio or Boston Children’s hospital for a procedure called a manectomy. Only a handful of surgeons in the country are qualified to do this. Under anesthesia they make a cut in the internal anus. If they cut the muscle and not the anus, Gannon would be incontinent for the rest of his life. This is extremely risky and would be a last resort.
So we are super sad that he is leaving Milwaukee but we will likely follow him wherever he goes.
With that, I called our PCP to get an X-ray like he recommended- they said he has to have an appointment and we can’t just get an X-ray. Okay, fine. I questioned whether or not we even needed one because Gannon had gone several times since yesterday – figured he was starting to get cleaned out.
We saw my doctor who has never seen Gannon before but he was AWESOME and totally agreed with our GI doc’s plan. We got an X-ray.
Gannon is backed up to high heaven. HARD stool throughout the intestines – even with daily miralax, even with having several bowel movements, even with the stimulants. So much so, he offered us to be admitted to the hospital for a full clean out including enemas and an NG tube to give him fluids to make him go – attack from both ends.
I declined, as an ER nurse I’ve given plenty of enemas in my day. This was nothing new for me.
We learned so much about Gannon today – we have a plan. We now know we can’t rely on regular bowel movements to tell if Gannon is constipated. He will probably need regular X-rays and clean outs to make sure it doesn’t get to this extreme again. I feel validated. I feel like the power is back in my hands. I feel like it isn’t my fault.
While he isn’t vomiting anymore, that likely had something to do with this. I just know that I never ever want to go through what we witnessed yesterday again. That was so so hard to watch. It was terrible. I wouldn’t wish it on my worst enemy.
Is this all TMI? Probably. But in our house, poop is a very important subject. Nothing embarrassing about it. Might as well be telling you about a bum shoulder or a sore throat. We need to normalize it for Gannon.
Anyway, thanks for reading friends! Cheers to progress in management of Gannon’s constipation!