Mixed emotions

[Ands]

So, back from GI consult following J's scopes a month ago.... It was confirmed that J has no active crohns and is clear from inflammation.

However, we still battle on with mouth ulcers and tiredness. Tiredness apparently is always going to be J's thing and hopefully the meetings with the mental health nurse will help him learn to cope with this (and yes I 100% agree it is) but still feel sad that we can't do anything to change this.

Additionally J has been put on a Cinnamon and Benzoate free diet for 12 weeks in the hope that this reduces the mouth ulcers.

I know I should be happy that the scopes showed nothing active but I just feel for him now having to adjust to this diet. He is putting a brave face on it and agreeing to give it total commitment but I know it I'll be hard.

Are any other kids J's age (12) coping well and seeing a difference with the same diet?

Sorry for rambling, just having a 'I hate this condition' mummy moment!

Ands. Xx

 

[kimmidwife]

I second this and also worry about if our kids will ever be "normal". I guess we just have to accept their new degree of normal and help them live and be happy and healthy.

 

[crohnsinct]

Ands, sorry haven't been keeping up on the forum so not really familiar with your son's case but have you had his b12 levels checked? A b12 deficiency (common among Crohnies) can contribute to mouth ulcers, cold sores and the like. Also, is he using a toothpaste with Sodium Laurel Sulphate? Many people with mouth issues have found switching to an SLS free toothpaste really helps. Really no one should be using a toothpaste with SLS in it but especially with mouth sores.

Sorry about the fatigue...poor pumpkin. Actually I am now wondering if the b12 might not help with that too.

 

[xmdmom]

I'm sorry your son is feeling tired and I hope it is not the new normal for him!
What does his doctor think is causing the tiredness? medication? vitamin issue? anemia? other? My understanding is that if the Crohn's is inactive, there should be a normal amount of energy.

Is your son's doctor monitoring the parts of the small intestine that scopes can't see to rule out Crohn's activity there? Are hemoglobin, and CRP normal now?

Hugs and hoping your son's energy returns soon!

 

[Ands]

We've changed toothpaste and this has made a difference in the fact that it now doesn't hurt to brush his teeth but not stopping ulcers appearing. Spent two hours today in supermarket and still struggled finding things with no flavouring in!

Unless his bloods were taken when he was down in theatre having his scopes, his blood has not been done for about 10 weeks. Don't think Vit B12 been done for a long time. He has an appointment with normal kids dr in a couple of weeks so I will ask then for them all to be done.

Thanks for support.

Xxx

 

[Mehita]

Maybe check his iron too?

How is he doing in terms of growth? Could it be the star of puberty that's making him extra tired? There probably is something going on, but then if you add puberty on top of that it could make things seem even worse.

I think getting some recent labs might help.

 

[Jenn]

Magic mouthwash might help heal the mouth sores: mix teaspoon of liquid benadryl, teaspoon of liquid maalox, rinse and spit, twice/day. Checking the b12 for the fatigue is a great idea. Has he had an MRE? Scopes don't find small bowel inflammation, which is where b12 is absorbed.

 

[my little penguin]

ALso have them look into behcet's

it mimic crohn's and can cause gut inflammation that disappears
skin issues and lots of ulcers

stomach pain etc....


http://behcets.info/pdfs/BD_ClinicalReview_SaraMarshall.pdf