Crohn's Disease Forum » Parents of Kids with IBD » Anxiety, Crohn's, and our Children

12-15-2017, 12:26 PM   #1
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Anxiety, Crohn's, and our Children

If anyone can help, my undiagnosed son is suffering from anxiety. I am wondering if any of your children have suffered with this prior to or after diagnosis. How did you deal with it. It is very tough.
He is in chronic pain, but not really having bathroom issues.
12-15-2017, 01:03 PM   #2
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What is exactly is he anxious about? Can he articulate it?

My daughter has had a LOT of trouble with anxiety which is entirely related to medical procedures and severe chronic pain.

For us, what has been most helpful has been seeing a psychologist regularly. She didn't want to go, and really fought it but now is the first one to say that it really changed her life.

In her case, the anxiety revolves around pain - if it is really bad, when will it get better/is it going to get better/"I can't deal with it anymore" kind of stuff. If the pain is a bit better or under control, "when will it come back" is the big issue. She is able to keep herself distracted during the day and so it's at night when it's a big problem.

For her, we have found some tools that help. At night, she listens to audiobooks while falling asleep so she doesn't focus on the pain or the anxiety that comes with it. In general, distraction is very helpful and yes, that sometimes means she watches a lot of TV or uses her computer way past bedtime.

She has a couple of apps that she likes - iSleepEasy has guided meditations that are appropriate for teens and older kids (recommended by the pain center at Boston Children's). It also has nature sounds which she likes to listen to when falling asleep.

Then there is an app for younger kids called Comfort Kit. It has a lot of tools - the child can choose how they feel ("worried" or "angry" or "sad") and then what to do about it - there are a bunch of choices (guided imagery, belly breathing - that kind of stuff).

I would say the apps are most helpful once the kiddo has learned these skills with a psychologist. But if you can't get to a psychologist, you could work with him.

When she is in a lot of pain, it helps her to try and do something - so distracting herself by doing a puzzle, or playing a game or doing her PT exercises/stretching. If she is in too much pain to do something active or can't concentrate enough for a game or puzzle, then TV honestly works best.

We also use a lot of ice and heat for the pain. A TENS unit might help too. Has he been given an IBS med? We use Levsin for belly pain and that really helps.

When she was younger and still in school, unless the pain was very severe she would try to go to school. School is distracting - if they're home, they just focus on the pain. That meant that sometimes she would go to school and not attend all her classes - she'd go to the nurse for some, or she'd call me at lunch time asking to go home, but she tried to be in school as much as possible. Being with her friends, having to concentrate on school work - all that took her mind away from the pain (unless it was really severe).

For kids with chronic pain syndromes (and I'm not necessarily saying your son has one), going to school and keeping life as normal as possible is very important. That means doing stuff even when the child is in pain - sometimes in a lot of pain. It is REALLY tough and that's why there are inpatient pain programs that teach kids to push through the pain - it's often not something they can do on their own, if the pain is very severe.

In a pain syndrome, what happens is essentially that they have over-active nerves that keep sending pain signals long after the initial trigger for the pain (inflammation, a virus, an injury) has healed or is gone. In my daughter's case, she lived with uncontrolled joint inflammation for so many years that her nerves just got used to sending those pain signals. So now when there is even just a little inflammation, she feels a LOT of pain. That's why these pain syndromes are sometimes called "Amplified pain syndrome" or something like that.

For abdominal pain, the equivalent is called visceral hyperalgesia which is essentially amplified pain of the belly/stomach.

But anyway, 9 times out of 10, my daughter will be happy she pushed herself to go see her friends or go babysit or get out of house. Sometimes she'll go and regret it - that happens too. But most of the time, keeping things as normal as possible helps. It is REALLY hard for her to sometimes make herself go - sometimes I drag her to the gym to swim and she is so grumpy on the way there. But once she's in the water, she's happy and her pain goes down.

All this does apply to a chronic inflammatory illness like IBD with one caveat - kids with IBD do need to rest sometimes and listen to their bodies. They become anemic, they get dehydrated so it's not completely the same as a chronic pain syndrome, where they essentially have to ignore their bodies.

It is especially tricky when a kiddo has BOTH issues - a pain syndrome and an inflammatory illness because you have to treat them differently. In an active arthritis flare, she can't push herself too hard. But in an amplified pain flare, she does have to push past the pain sometimes.

But the bottom line is, what helps with anxiety is keeping them busy, involved in school, extracurriculars and when they're home - not focused on the pain.

It also helps my daughter's to be reminded of the plan - these are the things we are doing to change her pain - changing meds, procedures, PT etc. In your son's case, you are trying to get a dx, so remind him that he's having scopes and if those don't find anything, then you will keep looking.

Sorry that this is so long - I know I'm rambling now. I'll tag some other parents who may have ideas: my little penguin, crohnsinct
Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
12-15-2017, 01:07 PM   #3
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There's a great book you can get on Amazon called "Conquering Your Child's Chronic Pain." It is geared towards pain syndromes but it is useful for any chronic pain. It was recommend by the pain program my daughter did.
12-15-2017, 03:03 PM   #4
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T was dx'd with amplified pain. They told us it was most likely from the three years of pain she was in without getting a dx and then the year long drag to move to biologics. The Dr. told us her pain nerves were fried and just too used to firing off pain signals.

Ditto to everything Maya said. Also wanted to add that our pain management doc and the pain psychologist also said exercise is good for her. I forget the reasoning but it actually is true in T's case. Even before dx with her stomach pain. When she was playing softball (combo of distraction and exercise) she felt better. Off season is the worst.

Poor kid. It is so hard when you don't know what is wrong. If it is causing him anxiety etc, I would try to find someone he could talk to about it.
Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Vit d 2000IU
Multi vitamin plus iron

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
12-15-2017, 08:31 PM   #5
my little penguin
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There is a book for kids
What to do when I worry too much
Itís a workbook for kids 7-11 I think
Seeing a child psychologist really can help them talk about things and get anxiety under control
Definitely key before they become a teenager
We have one kiddo (non ibd )with anxiety

Itís a fine line since anxiety can produce physical symptoms including abdominal pain
Docs will of course blame every thing on anxiety though
So be aware

Exercise is good
Putting worries in a box
Child psychologist with medical issues
Rating pain by number and not asking about pain
Largo pain scale is funny version for boys
React to pain numbers without emotion

Itís tricky
Pm me if you want specifics on anxiety
DS - -Crohn's -Stelara -mtx
12-15-2017, 08:50 PM   #6
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Yes, that was one the biggest rules at the pain program - don't draw attention to the pain by asking all the time. If a child complains, listen, and acknowledge the pain, but don't make a big deal of it.

It was very hard for me as a parent to stop asking. Now I let her bring it up and we come up with a strategy. Right now, for example, she has been miserable all day with SI joint pain. So she decided she wanted to bake cookies to take her mind off of it and to ice her back.

We also got an anxiety workbook specifically for chronic pain - I will see if I can find it and get you the name.
12-16-2017, 04:49 PM   #7
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I often wonder how my 10 year old son would handle it.
He's tough but not use to pain.
I honestly don't think he'd handle it well.
Both my kids are so different.
How's your daughter handling her brother's situation.
I'm mom to............... Little Farm Girl 9 yr old
Ibd (microscopic)
dx Juvenile Arthritis
dx Erthema Nodosum
Bladder and Bowel Dysfunction
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 2 wks
MTX started AGAIN on 11/21/17
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine,
12-17-2017, 07:57 AM   #8
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Farmwife, she is really not paying attention to him at all! She is an empathetic, kind and loving person at school, lol, but she and her brother are close in age and have an antagonistic relationship.
But I think he is kinder to her since he had his first visit to the GI.
He said he does not want her to come to the hospital when he gets his scopes after Christmas. I had suggested it, because she has btdt.
12-17-2017, 08:09 AM   #9
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Maya123 thank you so much for your response. Truly.
He is anxious about a lot of things. A lot of it is about school, and it is hard to get him to go. He is a good student and well liked, but filled with worry. He is anxious at home about noises in the house, he has a bedroom in the basement which is finished, but he is having a hard time sleeping. He is also anxious about being at friends houses so lately he stays close to home. This summer I noticed he didn't want to be swimming in the lake with us all much, though he could never really say why.
So it's not obviously pain related stuff.
12-17-2017, 02:19 PM   #10
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I think he would definitely benefit from seeing a child psychologist - they could teach him tools to deal with his anxiety. It would also help him deal with chronic pain, which is HARD.

Usually they say some anxiety is normal for kids, but if it is interfering with his/her life, then it needs to be addressed.

An easy skill to teach him is belly breathing (diaphragmatic breathing) - that was the first thing my daughter learned when she saw her psychologist and it is something she still uses today to calm herself down.

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