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Crohn's Disease Forum » Parents of Kids with IBD » Lab update and new issue


02-05-2015, 05:00 AM   #1
Imerald
 
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Lab update and new issue

Hi there!! I hope everyone is doing well. It's been awhile since I've been on here. I got a new phone and it took me awhile to remember the app to download.

So the last I posted I was asking for suggestions regarding labs as it was very traumatic the last time (bruises on her arm from restraining her, screaming, crying, etc) and we were given a pass on her last set because she was doing so well. Well, she's been having some rashes and allergic reactions and her dermatologist ordered labs and of course we dreaded that. I'm happy to report that we went with a different lab at a local hospital and she never even knew they drew blood. It was amazing! I cried and hugged the nurses and couldn't thank them enough for making that experience truly amazing.

So aside from our amazing lab visit, my little bug is having some other issues that just popped up about 3 weeks ago. She's holding her BM's. Screams in pain asking for us to take her to the hospital, begging us to help her. It's heart wrenching.

The GI thinks she's constipated, and when this started, her stool was hard once. But since it's been very soft and we've been giving her mineral oil and Miralax. The Miralax makes it very watery so we've stopped that. But she still refuses to poop. Eventually she has a BM because it has to come out, but she won't use the toilet and ends up soiling her underpants, going on the floor, in the tub, or a pull-up if she'll wear it. All of that preceded by her pacing , screaming and crying. She's holding her urine somewhat too because she is scared she'll poop. She said it hurts to poop and it stings. We've not seen any blood at all and she's only taking sulfasalazine.

I put a note in with the GI again today as hubby and I think this is more than constipation. Anyone dealt with anything like this?

-Susan
Mom to Ella
Dx'd with UC 8/2013
02-05-2015, 07:15 AM   #2
Pilgrim
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Not exactly, but when H has a poop that is more formed than what is usual for her, it was so painful to her that she literally would scream and cry on the toilet "my poop is attacking me!". Sounds kind of funny, but it was dead serious and she was really in pain. Once finished, she was fine.

Maybe when their colon is inflamed, just the extra pressure from a little constipation is really painful? I don't know. It's gotten better for us. If she goes every day, no problem. If she skips a day - pain.
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Mom to daughter,age 5, diagnosed at age 3 with Crohn's Disease
Current Treatment: Humira (started 12/2014) moved to weekly injections (07/2015), Back to 50% EN orally. Zinc supplements. Calprotectin through the roof.
Previous Treatment: Azathioprine (discontiued 09/14 due to Pancreatitis) Flagyl, Sulfasalazine, EEN, Iron,Vit D, Zinc, SCD
02-05-2015, 07:23 AM   #3
my little penguin
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Miralax can make it wayery but the dise can be lowered to make it just right
Sounds like she figured out poop equals pain .
Do you have a kitchen gram scale?
Bed bath beyond target etc... Sell them
Zero the scale
With the empty cap on it
Then measure the miralax
Much more accurate that way
Some kids need 5 grams some need 17 grams
This can help you figure it out and keep her from holding it .
Taking regukar potty breaks -every 2hours also helps with the peeing etc

My DS did try to hold it for an hour or two due to rectal pain
But is old enough to reason with
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02-05-2015, 08:18 AM   #4
Mehita
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Could she have a fissure or abscess or something just on the edge or just inside her bum?

Remind me, how old is she?
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02-05-2015, 09:01 AM   #5
CarolinAlaska
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My daughter has had fissures just inside her anus that make stooling very painful at times. The GI also wrote it off as constipation (she was having multiple episodes of diarrhea). He didn't look at her bottom or anything. That was the final straw to my decision that we needed a new doc. Fortunately hers healed up after about 2 weeks). I know it sounds gross, but if this is the case, I've heard of people stooling in a hot bath to reduce the pain. (If you try this, I highly recommend that you fish out the poo before draining the tub - believe me, it will save you a lot of grief!). I hope your daughter finds relief soon!
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02-05-2015, 11:24 AM   #6
Maya142
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My daughter also has had fissures and they were very painful. Sitz baths helped and hers got better in a couple of weeks too.

Could you distract her? Let her sit on the toilet and play a game or watch TV/a movie if you have a smartphone/ipad.
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02-06-2015, 12:08 AM   #7
Imerald
 
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Mehita, she's 3.5 years old. She's been doing so well for almost the past year and then these rashes started and now the poop issue.

She's poo'd in the tub a few times and we've tried warm water over her bum while she sits on the toilet but she hates anything that correlates with us getting her to poop and just screams. We've tried bubbles, gave her the iPad to watch, sat on the floor next to her, pumped her legs, rubbed her belly (which causes her to empty her bladder a lot and how I know she holds it) and putting KY around her anus to help make it easier to come out and nothing seems to help.

This daily battle is really taxing as it can last anywhere from 1-3 hours until she's let go of enough to feel ok.

I'll try weighing the Miralax and see how that goes. Thanks for the suggestion.


02-06-2015, 12:19 AM   #8
Maya142
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If it is a fissure, I think (not sure!) your GI may be able to prescribe something to help it heal faster.

Your GI also may have ideas about how to get her to have a BM without traumatizing her. Withholding BMs is really common in little kids. My daughter did it when she was 3 or 4 years old. We gave her mineral oil and put her in a pull-up at night. It worked really well! She stopped being afraid of having a BM because they didn't hurt anymore, and eventually stopped associating sitting on the toilet with pain.

We also tried suppositories which were less successful (she hated them so much we only tried them twice).
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