Colonoscopy with cleanout at home- what to expect?

[Henrietta78]

Hi all,
Have been lurking around, but finally joined. Little bit of background...my 4 year old son was diagnosed with indeterminate IBD at 2 years old. Chief symptom was persistently soft, bloody and mucousy stool with lots of gas and bloating, and iron deficiency anemia. He had a week long hospitalization while they ran tests- colonospy, MRI, Upper GI with small bowel follow through, to name a few. They determined it was IBD and gave him prednisone and he immediately went into clinical remission.

Since then he has been on sulfasalazine, avoiding dairy and things have been pretty much in control, with a brief bout of soft more frequent stools over this summer. They increased his sulfa and I removed a particular soy yogurt from his diet which seemed to be problematic and things pretty much firmed up. His GI doc wants to repeat the colonoscopy to see if he is histologically in remission as well. If he is, she said they will stop sulfa and remove the IBD diagnosis. If there is evidence of chronic inflammation, they will put him on a stronger medication. So, I really have two issues/questions:

1. What can I expect with the colonoscopy clean-out at home? With the 1st he was already in the hospital and in diapers so it was a totally different story.

2. If they do see evidence of chronic inflammatory process, I am nervous to have him on a stronger medicaiton when he is doing so well and is clinically in remission. I know the main issue for his doc is why do his fecal calprotectin levels remain so high when everything else is so normal. Anyone have any insight?

 

[Farmwife]

Hi and welcome.
My little girl will be 4 in January.
I just asked and so have others about this. Here's my thread about that very question.
http://www.crohnsforum.com/showthread.php?t=43648
It's very informative and maybe you'll get a laugh or two.
More wonderful parent's will be along.

 

[Clash]

Welcome to the forum Henrietta78, my son was so much older at the time of his colonoscopy(15) that I'm not sure his experience would be relevant. I'm going to tag a few people that may have more relevant experience or are more knowledgeable about the process for younger children, my little penguin, Jenn, Suzysu, I'm sure I am leaving some experienced IBD parents out but hopefully they too will swing by this thread shortly. Good luck with the colonoscopy and I hope that you get good results.

 

[my little penguin]

Hugs...
Most of the thread farmwife linked covers it.
Plenty if fluids ( clear) make invisible Kool aid Popsicles and drinks.
Entertainment for the bathroom.
If he like Caillou then find the two hours version put it into a portable DVD plAyer in he bathroom.

As far as inflammation found .
If he has ongoing inflammation then it needs to be treated since damage will be done.
Are they doing an upper scope as well since crohn's can be inflamed in the upper Gi area especially in kids?

 

[Henrietta78]

Thanks, Farmwife! I especially appreciate the humorous anecdotes. It is the prep I am most worried about since the first time he had the Golightly (haha) by NG. I am worried he will throw up...and I have visions of us both sleeping in the bathroom.

 

[my little penguin]

Can you ask about the miralax prep ?
Most docs will agree if you ask.
Just make a sticker chart and set the time .
DS has had 3 scopes no vomiting so far ( knock on wood )
During prep and this is a kid who was vomiting weekly at that point.
Maybe ask the doc to have zofran on hand .
We hAd that as a option.
Good luck

 

[Henrietta78]

My little penguin, yes, they are doing upper as well. They are leaning more towards a diagnosos of UC if anything, and first scope showed acute inflammtory process as opposed to chronic, but GI doc is saying perhaps they just caught it in the very beginning. And I know you are right about the inflammation causing damage, I'm just very wary of putting him on more meds. I think I am partialy still in denial even 2 years in.

How long does the total clean out take?? When he was two it was an all night affair of explosive liquid diapers. Will he literally have to sit on the potty for hours? Once he's "clean" what will happen?

 

[my little penguin]

Usually a light breakfast a piece of toast then the laxative plus the miralax beginning . 2-3 hours later some times 4 the bathroom ride begins .
He drinks 6-8 oz every half hour at the start until he finishes - not sure for his size how much but DS had 6-8 glasses I think.
Once he starts better to stay in the bathroom .
He will clean out. When all that comes out is yellow clear liquid ( if you use yellow Gatorade ) any other liquids are extra - we did clear pedialyte juice boxes to keep hunger at bay.
It was ok day of clean out but next morning was rough.

 

[Jmrogers4]

Just wanted to say welcome to the forum. I don't have much to add my son was 10 at his first scope.

 

[crohnsinct]

Hi there and welcome. MLP pretty much covered the prep. I also would imagine if inflammation is found it has to be dealt with even if no outward symptoms. I also wonder why they would drop meds if no inflammation found. I still consider myself new to all this but I would imagine the meds brought about the remission and you would need them to maintain that remission. But what do I know. I am not a doctor, I just play one on the internet.

Good Luck!

 

[Sascot]

Welcome! Sorry, but I have no experience doing the clean out at home - our GI had my son admitted the night before to have it done. I suppose it depends what prep they give him. The one my son had was pretty immediate after the drink, then he spent about an hour on the toilet :yrolleyes: before being fine the rest of the night. It's always the drive to hospital that I worry about :lol:.
Hope it goes well and it doesn't show anything too bad.

 

[DustyKat]

Hi Henrietta78 and :welcome:

You have been given fab advice. My two were much older when diagnosed but I guess the only thing I would add is given his age it might be worth popping him in pull ups for the duration of the prep.

Good luck and keep us posted!

Dusty. xxx

 

[kimmidwife]

Hi Hnerietta78,
Welcome, you have been given some great advice already. One thing I do recommend is starting the prep early in the day. A lot of docs recommend starting at 2pm. We started at 10am and she was pretty much done by 7 pm and did not run to the bathroom a whole night, throughout the night. We did the miralax prep which was a lot easier and more gentle the the golytley(I love that name lol)

 

[izzi'smom]

^^^ Here to agree with Kim. Our first scope Izz vomited the initial prep up; we got Miralax instead but by the time she finished it she was up all night...so hungry AND tired the next am. Wishing you luck!!

 

[Suzysu]

Hi!
Freddy was about 20 months when he had his scopes - I can't remember the name of it but I did struggle to get him to take it (he is fussy anyway) I think with a slightly older child it may be easier as bribary works better!!, I do remember that it wasn't nearly as bad as I thought although I did worry as it took hours to work and I was expecting a quick response!!. I guess every kid reacts differently - but don't forget your GI nurse is only a phone call away if you need any advice!
Good luck - I hope it all goes well xx

 

[Henrietta78]

Thanks, everybody. Good advice! I think I will start early in the day, that way maybe we can all get some sleep the night before...If I remember the paperwork correctly it is Miralax they are giving him. Does apple juice qualify as a clear liquid? He won't drink Gatorade. And I will keep a pull-up handy.

Crohn's Instinct...regarding dropping the meds...histologically when they did the first scope the findings were not consistent with chronic inflammation, and he is doing so well clinically (gaining weight, energy level, no blood in stools, no inflammatory markers in the blood etc.) they are "challenging" the diagnosis somewhat. They think there is a chance either they scoped him at a point of acute inflammation (like the disease was presenting for the first time), or it could have been something else altogether despite multiple inconclusive tests for celiac's disease, c-diff, salmonella, etc. He still has those high levels of fecal calprotectin, however.

 

[my little penguin]

Pedialyte is also a clear liquid in the juice box form they have apple and cherry.
Invisible Kool aid is also clear - cherry and lemonade
Talk to your Gi since different offices have different rules as to what they call clear.