Crohn's Disease Forum » Parents of Kids with IBD » In remission but still in pain?

09-20-2017, 10:44 AM   #1
Join Date: Dec 2016
Location: Santa Fe, New Mexico

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In remission but still in pain?

My son Gabe age 12 was diagnosed a year ago. He had stress Monday afternoon. He was down with stomach pain Monday night till this morning, 1.5 days later. He missed school yesterday. He didn't have other symptoms, such as that would indicate an obstruction etc. I am trying to understand the cause of his pain since he is in remission thanks to Remicade. Last scopes and all labs look clean. No detected strictures, fistulae, ulcers, etc. He is on 30 mg of amiltryptaline for IBS. Since he experiences untraceable pain his doctor diagnosed IBS explaining that it may be ghost pain, his nerves are used to pain and feel it easily even when there is no physical source. Gabe goes to therapy weekly for stress and coping. I am very attentive to his emotional needs however I finally encouraged him to tell his mind and body to believe they are OK now. Can someone please help me understand the pain where there is no evident physical cause?
09-20-2017, 11:38 AM   #2
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Maya142's Avatar
Have you heard of amplified pain? It's essentially another name for what your doctor is telling you - the nerves get so used to sending pain signals, that even once the inflammation is gone, they continue to send them and the child continues to be in pain.

It's very real pain. My daughter has both IBD and a form of inflammatory arthritis, and for years her arthritis was completely out of control. We finally got her arthritis under better control but she continued to be in severe pain.

We did outpatient PT and psych but her pain was still out of control. She was not sleeping, missing a lot of school and was just miserable all the time.

So then we did an intensive pediatric pain rehab program. It essentially teaches kids how to live with pain - how to function despite pain. It is also supposed to "retrain" the nerves and over time, as they get more functional, pain is reduced.

There are programs all over the country. Ours was 3 weeks, inpatient for 2 weeks, day program for 1 week. It is intensive PT/OT/aqua therapy/group psych/CBT and that kind of stuff to get the child back on his/her feet.

It REALLY helped my daughter. She went from not sleeping all to falling asleep normally - within 20 minutes (she had been lying awake for 5-6 hours every night). She became much more functional and learned how and when to push through the pain.

She has now completed 1 year of college. It was tough, but she got through it. She now has lots of tools - ways to cope with pain - instead of missing school and activities she loves.

These programs generally do not use meds - if the kiddo is on strong pain meds (opioids) they try to wean him/her off them. They sometimes add meds for nerve pain - like Elavil or Lyrica or Gabapentin.

But mostly it is a non-med approach.

Many of the big children's hospitals have them.

There's a great book called "Conquering Your Child's Chronic Pain" - we were given that to read before doing the program. I would definitely read it if you can - you can get it on Amazon.

And if he continues to be in a lot of pain and is missing school and is basically not functional, then I would definitely look into a pain program. Some are outpatient, some are inpatient, all are intensive.

But the program really helped and changed my daughter's life for the better.
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
09-20-2017, 11:44 AM   #3
Join Date: Dec 2016
Location: Santa Fe, New Mexico

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Bless you for this amazingly helpful answer. I will get the book and look into a pain program. All the best to you and your family.
09-20-2017, 11:50 AM   #4
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Maya142's Avatar
You're welcome! Here is a list of pain programs:

You do generally have to travel to get to them - it's quite a commitment, but worth it. Mayo Clinic has a really good one, there are some in California (UCLA, Stanford)... I can't think of any ones that I know that are near you but you'd have to check.
09-20-2017, 09:47 PM   #5
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Pilgrim's Avatar
Join Date: Jul 2014
Location: Ontario

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This is from a totally different angle but recently two of the non- crohn's family members at our house had severe abdominal pain off and on over a few weeks. It was a virus. So, if you're lucky it could be a passing bug.
09-26-2017, 09:12 PM   #6
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kimmidwife's Avatar
Join Date: Sep 2010
Location: Florida

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Gabeís Mom,
We are dealing with this as well. My daughter is going to be evaluated at the pediatric chronic pain program in Cleveland clinic in Ohio. Maya told us about the program and we applied for it with her doctors approval. We got approved for the initial eval quickly so we will fly out there and hoping She will be approved for the full program.

Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.

Crohn's Disease Forum » Parents of Kids with IBD » In remission but still in pain?
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