Newbie Here--Son Has Crohn's

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Collin's Mom
New Member


Date Joined Apr 2017
Total Posts : 1
   Posted 4/25/2017 2:08 PM (GMT -6)   
Hello--

Back in October my 18 y/o son became very sick--it was discovered he had proctitis, a bacterial infection of his gums and mouth, a viral infection on his lips, rectal bleeding (due to proctitis). They did a regular CAT scan showed nothing other than his lymphnodes were inflamed due to infection. His white blood cell count was elevated and his Vitamin D and Zinc levels extremely low. They put him on a strong antibiotic which cleared things up. They couldn't tell much from the sigmoid; they did a colonoscopy which showed inflammation in parts of the bowel. They couldn't determine it was from prep or something more.

Family history--his aunt has a severe case of Crohn's and a great aunt (all paternal side) passed away at 14 from Crohn's, (back in the 1940s). Other indicators point to classic symptoms of Crohn's (dry skin, eczema, bloodshot eyes, severe allergies)--these are things I read can be related. His Dr. said it was too soon to officially diagnose him with Crohn's but she said everything is pointing in that direction.

He has not had a flare since he was on the antibiotic. They had him on 50,000mg Vitamin D for 8 weeks and now OTC supplement and a OTC Zinc supplement.

Recently, he has been presenting with a foul odor--I recognize it from experience with his aunt. I'm looking for advice on tricks to help with this. He is aware of this too.

I feel we are in limbo right now without an official dx and because of that I don't think my son is taking this seriously (eating right, etc.) Everything I've read says weight loss is a symptom, but he has had the opposite happen.

ANY words of advice this Momma Bear would appreciate.

clo2014
Veteran Member


Date Joined Feb 2015
Total Posts : 637
   Posted 4/25/2017 2:32 PM (GMT -6)   
Welcome to the forum. You will find lots of support here. There is another woman that has a son who was diagnosed with Crohns. I am sure she will be along to offer advice.

I am so sorry you are going thru this. I hope that your son does not have Crohns. I honestly would take a watch and see approach yet encourage education on Crohns disease.

You do not state if he is currently having Crohns symptoms such as colon inflammation with pain, if his blood work indicates inflammation, or if he is having alot of bowel movements a day or vomiting..or if the did biopsies and what those results were...so my answer is based on him not having those issues with you wanting to be prepared just in case...

Just in case...Talk to your son very seriously about diet, symptoms and being cognizant of lifestyle choices which could negatively impact him. I would ask him if he wasn't feeling well to try to keep a journal of what he ate and how he felt on a daily basis. This might help you, and him, recognize trigger foods. I would search for support groups and see if he would join in or volunteer... I would have pamphlets available for him to read. I think that I would research the best possible doctors and plan accordingly. Write it in a notebook so you, and he, will have it if you should need it. I would continue to monitor his health, ensure he received medical attention as needed and keep my own journal to help me remember what I saw or noticed.

Finally, I would help him as much as possible in the calmest manner and not rock the boat or cause any stress. You want him to be able to come to you with anything. There are many people who take years to be diagnosed and there are some people that have mild cases of Crohns and/or remission for very long periods of times.

My GI told me "Don't panic and remain vigilant. "

Wishing you all the best.....

Clo

Post Edited (clo2014) : 4/25/2017 2:48:18 PM (GMT-6)


BETTY SUE
Regular Member


Date Joined Nov 2015
Total Posts : 212
   Posted 4/25/2017 4:02 PM (GMT -6)   
Good afternoon and Welcome to the Forum,
Like you, I am a momma bear. My son was dx with Crohn's at age 18 just prior to him entering his freshman year in college. He has an uncle with Crohn's (paternal) and a cousin (paternal side) with UC. His was immediately dx (he had had ongoing diarrhea with blood for almost two years before telling his father and me) and was started with top down medications. Over one year later (and two hospitalizations - including one for illeo cecal resection) he finally has his life back and is in a "deep remission." Like clo2014 stated it may not be Crohn's - even with a family history. But regardless diet can make a difference as well as tracking his symptoms. I feel like a newbie with all of this (and would trade places with him in an instant) but this forum is the best. I have felt such support for me and my son. The best to you / son and hope you get some answers soon.

gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4303
   Posted 4/25/2017 4:06 PM (GMT -6)   
Make sure your son is a specialist in IBD, not just a GI specialist. I'm not sure what you mean by the foul odor...from diarrhea? Coming from his mouth, or what? Welcome to the forum. I know how scary it is to worry about your kids.
58 yr. old female, diagnosed with Crohn's in terminal ileum Sept-Oct. 2007. Dx. with c.difficile 1/12, 10/14, 11/15, 1/16. Fecal transplant on 2/24/16, and so far, no more c.diff!

5/20/14: Ileo-colic resection surgery after stricturing and partial bowel obstruction.
Not currently on any Crohn's meds and in remission, but struggling with bad IBS.

omla41
New Member


Date Joined Apr 2017
Total Posts : 4
   Posted 4/25/2017 5:25 PM (GMT -6)   
hi gumby44,

where did you do facal transplant?
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