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Tuesday, January 28, 2014

Our Next Big Challenge? A Cecostomy!

Well, we had some good news and some not so good news at our son's medical appointment today. We'd been dreading what we thought was going to be a certain colostomy for our almost-13-year-old son. The impact of a full colostomy on a young teen's life, while manageable, would also be quite challenging. This is not the age in which a kid wants to feel different. Or to have a bag of fecal matter hanging from his side during P.E.

So we have been grieving for him.

He's already gone through so much in his long life, having had to deal with numerous consequences of choices he did not make.  So we would love to just let him 'rest' for awhile. . .to have no new challenges for the foreseeable future.

Guess that is just not going to happen.

We went to his gastroenterologist today, expecting to be scheduled for a colostomy. We were ELATED to hear that, after all, he was not going to be having one. We were so relieved that we were positively giddy.

But then the doctor said the word: "Cecostomy."

And I had no idea what that was.

After all, we've thought we were heading toward one procedure for months.  A colostomy is what I've been researching and coming to terms with for a very long time.

So to hear this new word, I was filled with a combination of dread (fear of the unknown?) and optimism (maybe it's not as scary as it sounds?!?).  After all, the doctor's demeanor and countenance suggested this was at least a slightly more positive option than a full blown colostomy.  Right?!?

I suppose in some ways, it is.  But not in all ways.

A cecostomy is basically a small flexible tube that is permanently inserted into the colon, with one end outside the body.  A 'trap door' flap closes the opening and is used once per day to admit a flush of various solutions to cleanse and empty the bowel.  There is no 'bag' that needs to be worn or maintained and the tube and outside connection are smaller and less obtrusive than a regular colostomy.  With one, our son can still participate in almost all of the normal activities a typical teenage boy enjoys, including swimming and most sports.

Though it's not quite as invasive and permanent as a colostomy, he'll still have it for at least 2 years.  Overall, it will mean some freedoms he might not have had with a colostomy.

But we've discovered some significant down sides, too.

The one that will have the biggest long-term  impact on our lives is that every morning, for about an hour and a half, he will be in the bathroom completing a lengthy flushing procedure.  Every.  Single.  Day.  For at least the next two years.

And that's on top of everything else.  Which is, to be brutally honest, already a lot.

I think I'd like to have a great big cry, but, unfortunately, there isn't time.

We have another hill to climb.

(photo courtesy of publicdomainpictures.net and can be found here)


  1. Crud. Crud crud crud.
    This poor, sweet boy. I'm so sorry he's going through so much (and you too!). An hour and a half in the busy morning hours does sound daunting-- esp. with a full house of kids, getting ready for school. I suppose it's time to invest in a membership to an audiobook club online? He can listen as he deals with all that? Ugh. Poor kiddo. Hugs to you, faithful mom. Hugs and love to you RIGHT NOW.

  2. Thank you soooooo much. Support and understanding sure helps. I know we all go through struggles during our lives. . .it just feels like our beautiful boy has had more than his share.

    I love the audiobook club idea though!! With only getting the news today, I am still reeling a bit and haven't gotten past what the practical bits of the beginning are yet (hospital stays, etc.). But this idea is a good one!


  3. Hi there. We're in the UK where this op is very new. My son had his cecostomy three weeks ago and I'd like to reassure you. We do the flush in the evening when there is less rush to get ready and with practice have it done in under an hour. There is NO pain for my son which is a huge improvement in his quality of life. In my opinion this is a life changing procedure and far better than a colostomy. Good luck I hope you feel more positive, my son has multiple challenges but for us, this has been one of the better outcomes. Victoria x

    1. Hi Victoria!! We just moved back from the UK! (Husband is from Suffolk, but I am from California). We lived just north of Norwich in Norfolk. Thank you so much for taking the time to write. . .it is, indeed, VERY encouraging. Our son has some other diagnoses that make self-care a bit of a challenge, but I think that this procedure will improve his quality of life, as well! It helps a lot to hear from people who are actually living with this and doing well. . .thanks again!

      Blessings, Robynne

  4. Thank you for this, my son is 10 and I'll be having a Cecostomy placed at the end of the month. I can't begin to explain all the emotions going on, and thank you Victoria for the encouraging comments.

    1. Been thinking of you, Rosita, and hope all is well with your son. We had our son's cecostomy removed after two years and, so far, he is doing well! There was light at the end of the tunnel!

  5. I meant that "he'll be having a Cecostomy placed at the end of the month!"


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