Crohn's Disease Forum » Parents of Kids with IBD » Looking for a solution 15, crohns and chronic fatigue

01-11-2017, 01:49 PM   #1
Join Date: Jan 2017
Location: United Kingdom
Looking for a solution 15, crohns and chronic fatigue

I am a desperate mum looking for any kind of clues on how to deal with a 15 year old who is suffering with crohns and all that comes with that in addition to symptoms of chronic fatigue - sleeping 18 hours per day and very restless nights. He also had a tumor removed from his jaw bone in June. The gastro docs are telling me that the jaw tumor and the extreme tiredness are not crohns related and I should go back to my GP and dentist - the GP says the fatigue is crohns related and I should go back to the hospital and so I go round and round and get nowhere. Today (after a completely pointless session with my GP last night) I decided maybe I would have more help on the internet with people suffering from the same.

So here I am...

ps I got this link from a very nice person with crohns on mums net - thank you
01-11-2017, 01:58 PM   #2
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ronroush7's Avatar
Join Date: Oct 2013
Location: vienna, Virginia

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I would ask his doctor to do blood work on him.
01-11-2017, 02:10 PM   #3
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Join Date: Dec 2014
Location: Portland, Oregon

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My daughter definitely is fatigued when she is flaring, so I would think that your son's fatigue could be due to Crohn's. What is his current situation? Is he having other Crohn's symptoms, or does it seem controlled? Can you ask for a fecal calprotectin test to check for inflammation? Blood tests might give you some information, but many people don't have raised blood markers even when they are flaring, so that may not help.

Hope you get answers soon.
Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (20 mg weekly)
vitamin D, folic acid, iron, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15, 3/24/18-5/18/18
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Clobetasol for Remicade-induced psoriasis
01-11-2017, 03:21 PM   #4
Tesscorm's Avatar
Join Date: Jun 2011
Location: Ontario

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It's very frustrating when doctors shrug their shoulders and are done with it! But, sleeping 18 hours is not normal, whether it's crohns related or not.

As pdx suggested, does his crohns seem to be under control? Can you do further crohns related testing or, if they have been done recently, how are the results? Is CRP or ESR elevated? Is his HGB below average (anemia can cause fatigue) and is he pale (also related to anemia)?

Why is his sleep restless? Perhaps that could give a clue?? Pain, nausea, something else??

Can you explain your situation to either GI or GP and ask to have things ruled out? ie ask GI if there are any other tests that can confirm it is NOT crohns related so that you can push GP for further testing? Or, on the other side, can you ask your GP to assume it's not crohns related and test for other possibilities to rule them out, so you can then go back to the GI? When I once felt like I was getting a 'shrug' from my son's GP, I asked him what the next step would be if our roles were reversed and it was his son having the same issues (helped that he actually had a son exact same age as mine ), I could see that the question took him to a more personal level and he did take a few more steps...

In the meantime, how is his diet? If he's sleeping 18 hours/day, is he getting enough nutrition? Would he drink some nutritional shakes (in addition to his diet, not in place of meals!) to get some extra vitamins, minerals and calories?

Tess, mom to S
Diagnosed May 2011

May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
01-11-2017, 11:53 PM   #5
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kimmidwife's Avatar
Crohn's can cause fatigue but that seems excessive. Have him tested for mono or chronic fatigue syndrome. Keep,pushing. Don't let the doctors brush you off.

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 » Looking for a solution 15, crohns and chronic fatigue
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