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| Joshua at Easter |
As usual our appointment started out with the nurse coordinator. After bringing up the issue with Joshua's painful bowel movements, the doctors made the same assumption everyone else does - that Josh must be constipated if he is having trouble getting poop out. I understand this is the case with most children, but not with Joshua. He has chronic diarrhea because of his condition so stools being too formed is never the problem. Joshua takes imodium four times a day to slow down the natural movement of his intestines to try and reduce his diarrhea. The doctors suggested we cut his imodium in half to see if it helps his painful BM's. While this may seem like a valid suggestion, I knew it was a terrible idea since coming off the imodium will lead to Joshua having completely watery stools. I tried to patiently explain to them like I do with everyone else that he is the furthest from constipated and cutting down on the imodium will only lead to worse diarrhea and immediate diaper rash.
Thankfully Joshua needed to go while we were at the appointment so I stuck my head out the door and called for the doctors to come observe a poop in progress. Just like he always does, he turned bright red as he struggled to get the poop out. If you didn't know any better, it looks like he has a terrible rash all over his body during and right after a poop. The doctors asked if he always turned that red and I explained that he does. Once the doctors saw the consistency of his stool, they backed off the idea of cutting his imodium in half (I wasn't going to do it anyway no matter what they said). I know I'm not a doctor, but I have a Ph.D. in Joshology and I am confident I know more about what is going on with my son than they do.
I again explain my theory that it is the building up to the poop that causes all the discomfort for Josh and not the actual pooping process itself. I think it has to do with the contents of his intestines rushing through his system too quickly because of how short his bowels are and because of the missing ileocecal valve. The surgeon seems to believe me by this point, but the GI doc still seems skeptical for some reason.
He thinks it could be bacterial overgrowth causing the painful bowel movements so Joshua will start on two rounds of antibiotics this week to see if that helps. I was just relieved to hear him say that this is not normal for a kid with Joshua's condition because I was starting to believe Joshua was just going to have to learn to live with the discomfort.
The GI doc also thinks Joshua could be allergic to more things than just dairy because there is still traces of blood in his stool despite my extreme avoidance of all things dairy. He turned me to and said "No eggs, No peanuts, No shellfish, and No citrus." I look around in wide-eyed bewilderment as I try and comprehend what is coming out of his mouth. I already struggle with finding things I can eat with no dairy, now I am supposed to cut four more categories out of my diet, too?! I start to hyperventilate as I mentally tick off all the things now off limits to me - all breads, anything with mayo, shrimp, and FRUIT for goodness sake! I am totally freaked out by this point and even more disconcerted as I look around the room and no one else seems the least bit concerned. Finally I mumble something about being able to find something to eat and the doctor laughs and says he wasn't talking about me, it's Joshua that can't eat those things. Um - HELLO - Josh is on an all milk/formula diet for the foreseeable future. Of course he isn't going to be shucking oysters any time soon. Good grief! Are you trying to give a girl a heart attack?!
If the antibiotics do not clear up the bloody stools and painful bowel movements, Joshua will go back to the hospital for an upper GI endoscopy and another colonoscopy to see what is going on structurally and to determine how inflamed the interior lining of his intestines are which will give us an idea about other potential allergies. For now, the doctors are holding off on increasing his milk levels until we can figure out what is going on so he is stuck at 75 mL for a while. Besides the bacteria theory, the GI doc also suggested Josh's bowels could have reached the limit with the amount of sugar they can process currently which could be causing his painful poops and chronic diarrhea. Let's hope this is not the case because the only thing that will make this circumstance better is time. And more time on his IV fluids is not what I want to hear.
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| Joshua meeting his Great Aunt Cindi |
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