30 June 2010

Update: More Miralax, a Colonoscopy or Nothing At All

Bennett is continuing to have intensely painful bowel movement episodes on a daily basis.

Bennett has regular dirty diapers, many that are not painful.  But at least once a day, usually 30 minutes or so after a feeding, Bennett will begin screaming in agony until he passes whatever is through his colon (after which he will begin to coo like nothing ever happened).

These symptoms have been going on for some time.  But it was two weeks ago that we noticed the rectal prolapse and about that long since Bennett was placed on 1/4 cap full of Miralax (a stool softener) per day.

Concerned that these episodes are not going away and that the rectal prolapse is possibly continuing, we called the GI doctor yesterday.  The doctor's nurse was finally able to get back to us this morning.  His recommendation: increase Bennett's Miralax to 1/2 cap full of Mirlax per day.  Then, if he does not improve, go forward with testing, including a colonoscopy.

Concerned that more Miralax would not solve the problem (his stools can hardly get softer!), we called his CF doctor to make sure she was aware of this recommendation.  The CF doctor called us back today to talk about his symptoms and our concerns.

After a few minutes of listening to us, she came to the conclusion that Miralax doesn't make sense and that his symptoms were, in fact, "normal" for a CFer.  Since she disagreed with the GI doctor's initial recommendation, she planned to contact him herself to discuss the issue.

While on the phone with her, we brought up our concerns that maybe Bennett's pain was from the hypermotility of his intestines, rather than constipation.  The CF doctor countered that while that could be the case (Bennett's soft stools could be making his intestines spasm to get the stools through), any medication used to treat Bennett for this symptom could put him at risk for constipation and/or a bowel obstruction.

Therefore, the decision was made to do nothing.

At first, this was disheartening to hear.  How can we do nothing about his pain?...pain that has been going on for months and months and months.

But we finally resigned that CF is a complex disease that affects many organs.  We are fighting to keep him alive and sometimes that is at the risk of allowing him to experience pain.  For we know, it's not worth treating one symptom to find that we cause another.

Apparently, based on our conversations with other CF families, many CFers deal with this issue and have been told the same thing: it's normal.

We'll continue to consider other symptoms in addition to this one.  However, for now, when people witness these episodes of our baby in incredible pain while pooping, we must only nod "we know" and wait for it to pass.

Poor little guy.

1 comment :

  1. I'm so sorry to hear Mr. B is having trouble. Poor baby!!


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