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02-12-2015, 03:51 PM   #1
Patticakes
 
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Location: Weston, Vermont
I'm the Mom..Spun like a top..TONS of ??s

Hi to all,
I am the mom of a 25 year old who has hidradenitis suppurativa stage III, Both armpits and groin for 10 years. eczema, asthma, and as of 10 days ago ulcerative colitis.
My son has had 2 major surgeries excision of left and right axilla (armpit) and reconstruction. He was to have a third surgery, Excision and reconstruction of his groin, however, he developed UC.
His Colonoscopy showed The inflammation was continuous and circumferential. It was of mild severity(1st question: does that mean mild or severe?) and more patchy in the rectum and sigmoid .
Since Feb 3 we have have been on the Fodmap diet (If he has to eat it, then so do I), he is on prednisone 20 mgs, imodium 2 pill a day and as of yesterday VSL#3 packets. One packet before food, until he waste the bad flora, couple of days than 2 packs a day.
Vitamin D, he is low and was prescribed 50,000 iu once a week, he gets a massive migraine taking a mega-dose, so now he is taking 6000 iu OTC everyday....Okay.... question #2 Should he take pills, gels or liquid for best absorption and
question#3 what about Vitamin B....Pills, liquid or patches.....
Oh I should mention his Dr's want him on remicade.....Not sure how I feel about that........
02-12-2015, 04:09 PM   #2
Pilgrim
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Remicade might make him feel better than he has in years.

I think "mild severity" means that his inflammation is mild. I would wonder about the patchy rectum though. Usually if the diagnosis is UC the rectum is fully involved. Did he have biopsies? Have you seen the results of those yet?

There are a lot of people and parents both around here with Remicade experience. I haven't read much about HS, so it will be interesting to learn more.

It sounds like you've been through a lot with your son. Hope he can get treatment that brings him relief and remission.
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Mom to daughter,age 5, diagnosed at age 3 with Crohn's Disease
Current Treatment: Humira (started 12/2014) moved to weekly injections (07/2015), Back to 50% EN orally. Zinc supplements. Calprotectin through the roof.
Previous Treatment: Azathioprine (discontiued 09/14 due to Pancreatitis) Flagyl, Sulfasalazine, EEN, Iron,Vit D, Zinc, SCD
02-12-2015, 05:16 PM   #3
Patticakes
 
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Biopsy's ...yes....Inflamed colon, biopsy: Moderately active chronic colitis,negative for dysplasia.
Not sure about the patchy, I read that patients with partially treated UC might have discontinuous or patchy involvement. He was on prednisone for a week in October for his HS, perhaps that is why?
02-12-2015, 06:36 PM   #4
my little penguin
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There is a parents section here
Even older kids since parents are parents

http://www.crohnsforum.com/forumdisplay.php?f=49


My kiddo is 11
He started remicade at age 8.
He had to switch after 8 months due to an allergic reaction and started humira.
Biologics have been the best thing that happened to DS .
He also is on vsl#3 double strength since crohns affected his rectum
As well as other areas
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DS - -Crohn's -Stelara
02-12-2015, 10:35 PM   #5
araceli
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Hello. My daughter was Dx at 14, she is 18 and has been on remicade for over 2 years. She has been on remission since she started with the infusions. Currently taking 10,000uil of vit D soft gels. Sending hugs and support your way.
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Mom/ Girl 19
dx 2011 crohn's in terminal ileum, peri-anal
Prior Meds Asacol, Prednisone, nexium
Current meds.
Remicade since Nov. 2012
Supplements
5000 Vit. D, Multi-Vitamins with Iron
Currently in REMISSION :dance

Mom/ 16 boy
Amplified musculoskeletal pain
Prior. Prednisone, sulfasadine,
Currently. Celebrex, gabapentin, amitriptyline.
02-13-2015, 12:44 AM   #6
Lady Organic
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Some colonic IBD can be mixed just like in my case and share features of both CD and UC. I've had some healthy patches in my rectum and sigmoid, but the global appearance of my disease looks like UC. Biopsies could never pinpoint which disease I have. The term indeterminate colitis is also often used and the doctor can play with the diagnosis over time.

has the doctor talked about trying Sulfasalazine before remicade? for mild to moderate disease, sulfa is well indicated for both inducing and maintaining remission.

Vitamin D must be taken with a lipid component for absorption. i.e nuts, oil, fatty fish, etc...
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''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
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