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#417936 - 10/31/10 12:46 PM Newly diagnosed with Crohn's disease
danyhurts Offline
Fourth_Degree_AS_Kicker

Registered: 01/19/09
Posts: 322
Loc: New York, USA
After great success with the NSD for almost a year, my son went off the diet. His symptoms returned gradually, so he thought he might be able to eat some starch again. Within a few weeks he was experiencing terrible lower back pain and rib pain, which he never experienced before. It was difficult to breathe and he got very scared. He has been back on the NSD for about 3 weeks now and there has been a great improvement in his rib cage pain but still suffers from lower back and hip pain.
For the last month he has been getting very bad stomach pains and thought is was an ulcer from the 16 advil he started taking again for AS pain.
On Friday he went for an endoscopy and pelvic sonogram and was diagnosed with Crohn's disease. This was devastating news for him and he became very depressed with yet another autoimmune disease. His bowels are normal, neither constipated or diarreha, but dr saw inflammation in the intestines going to the colon.
We are going the the gastro dr on Tues to talk about a plan.
The doctor put him on endocort and nexium.
He has continued to be 100% on the NSD. I do believe that will help him with Crohn's too.
His dr said that maybe he really has had Crohn's all along and that it might not be AS, but he has all the classic symptoms of AS.
Can anyone help me with what to ask the dr? Meds? Vitamins?
Thank you,
Laurie

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#417943 - 10/31/10 01:16 PM Re: Newly diagnosed with Crohn's disease [Re: danyhurts]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 21342
Loc: Upstate NY
i think the doctor is probably correct. these diseases overlap. my stepfather with crohn's has the same sort of arthritis symptoms i do with undiff spondy. while his GI symptoms are worse and my joint symptoms are worse, it all overlaps.

my stepfather has found asacol very useful for his crohn's, but the doctors have been trying to persuade him to try the biologics.

as for diet, that seems to be important for crohn's though the exact diet seems to depend from patient to patient. my stepfather can't eat anything that might get stuck in his inflamed colon: corn, nuts, seeds are especially bad. but really a food /symptom diary can be very helpful to see what works for an individual; that's what i did for my gastritis. and there were a few things that flared it that i'd never have guessed without the food / symptom diary.

sorry to hear that your son has crohn's and how upset he is, but there really are drugs out there that can control it. my stepfather's crohn's was bad at the beginning just on the prednisone (all that was available back then) but for the last 20 years or so, the asacol worked very well. and i've heard such good responses to the biologics as well.
_________________________

sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)

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#417962 - 10/31/10 04:08 PM Re: Newly diagnosed with Crohn's disease [Re: Sue22]
danyhurts Offline
Fourth_Degree_AS_Kicker

Registered: 01/19/09
Posts: 322
Loc: New York, USA
Hi Sue,
Thanks so much for your response. It is always helpful to hear that there is medication that will control the disease. I'm glad to hear that your stepfather is doing well for all these years. The food diary is a good idea.
I wonder if the medicine for Crohns will control the symptons of AS?
Laurie

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#417972 - 10/31/10 11:20 PM Re: Newly diagnosed with Crohn's disease [Re: danyhurts]
Alinus Offline
Ninja_AS_Kicker

Registered: 01/09/10
Posts: 839
Loc: Romania, Suceava
could be. I have UC, and after switching from AS medicine to UC, things got better both ways.
_________________________
34. Some rheumys say AS stage 1-2 some others say USpA
Also UC - rectocolitis.

UC curently in remission since feb 2011.
AS/USpA remission march-aug 2011. Flare - sept-nov 2011 (antibiotics). Remission now...

Modified NSD/SCD. Cook your own !
____________________________________________________________
Mesalazine-Salofalk 500 mg/day

And the list of my medication has become verry short after some years on this diet smile

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#418008 - 11/01/10 08:56 AM Re: Newly diagnosed with Crohn's disease [Re: Alinus]
danyhurts Offline
Fourth_Degree_AS_Kicker

Registered: 01/19/09
Posts: 322
Loc: New York, USA
Hi Alinus,
That is so good to know that your symptoms got better with UC meds. We are going to both Rheumatologist and Gastroenteroligist today.
Hopefully we can get a good medicine plan going so Danny can get out of this terrible pain he is in.
What meds are you on?
Thanks for your response.
Laurie

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#418025 - 11/01/10 10:18 AM Re: Newly diagnosed with Crohn's disease [Re: danyhurts]
Inanna Offline
Very_Addicted_to_AS_Kickin

Registered: 11/15/01
Posts: 18060
Loc: UK
Laurie, I'm so sorry he's been diagnosed with this too. It's too much for one child!!

Have you considered the biologics for him? Remicade is apparently very effective in treating Crohn's as well as AS.

Warm hugs,


Edited by Inanna (11/01/10 10:19 AM)
Edit Reason: stupid typo
_________________________
Kat

A life lived in fear is a life half lived.
"Strictly Ballroom"


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#418026 - 11/01/10 10:24 AM Re: Newly diagnosed with Crohn's disease [Re: Inanna]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 21342
Loc: Upstate NY
what kat said about the biologics
_________________________

sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)

Top
#418034 - 11/01/10 11:00 AM Re: Newly diagnosed with Crohn's disease [Re: danyhurts]
MollyC1i Offline
Very_Addicted_to_AS_Kickin

Registered: 01/21/04
Posts: 9833
Loc: Brittany, France (since Nov 08...
Laurie - LDN (Low Dose Naltrexone) is helpful in treasting Crohn's). Might want to check it out - Mayo Clinic were conducting trials in LDN/Crohn's (don't know how far along they are.) Also pretty good for treating AS inflammation in the spine.

I basically only use LDN - no side effects.
_________________________
MollyC1i - Riding OutAS

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#418048 - 11/01/10 12:35 PM Re: Newly diagnosed with Crohn's disease [Re: danyhurts]
Alinus Offline
Ninja_AS_Kicker

Registered: 01/09/10
Posts: 839
Loc: Romania, Suceava
Hi Laurie. I use Salofalk a german brand wich contains mesalazine. There are several other brands that do just the same thing.

Good luck to you and good luck with Danny

Originally Posted By: danyhurts
Hi Alinus,
That is so good to know that your symptoms got better with UC meds. We are going to both Rheumatologist and Gastroenteroligist today.
Hopefully we can get a good medicine plan going so Danny can get out of this terrible pain he is in.
What meds are you on?
Thanks for your response.
Laurie
_________________________
34. Some rheumys say AS stage 1-2 some others say USpA
Also UC - rectocolitis.

UC curently in remission since feb 2011.
AS/USpA remission march-aug 2011. Flare - sept-nov 2011 (antibiotics). Remission now...

Modified NSD/SCD. Cook your own !
____________________________________________________________
Mesalazine-Salofalk 500 mg/day

And the list of my medication has become verry short after some years on this diet smile

Top
#418080 - 11/01/10 02:15 PM Re: Newly diagnosed with Crohn's disease [Re: Alinus]
avonldy Offline
Major_AS_Kicker

Registered: 02/26/10
Posts: 2190
Loc: N. Sacramento Valley
Alinus, I hate to say this, but the NSD caused my UC to get worse. The reason is that it contains so much raw vegetables and fruit. Many people with IBD find that the raw fruits and veg. irritate the lining of their intestines. That is especially true of food containing a lot of roughage. When they are flaring, Many people need to stick to a Low residue diet so help heal the gastric system.

Most of the TNF blockers will help both IBD and AS.

I hope that your son's visits to his doctors today will help with his problems.

Donna
_________________________
Donna
Cherish your yesterdays,
Dream your tomorrows,
But live your todays.
Do the very best you can
leave the rest to God.
God Bless,

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