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02-12-2017, 04:17 PM   #1
sheffieldruss
 
Join Date: Oct 2016
Location: sheffield, United Kingdom
Crohn's flare despite SCD

Hello!


So Iím 53 and had an unexpected Crohnís diagnosis last year after a routine colonoscopy for diverticulitis Ė in retrospect Iíve had loose bowels for 30 yrs, a perianal fistula 20 yrs ago and had mouth ulcers, migraines and occasional night sweats during the previous 6 months. I had my first bad Crohnís flare last Autumn, brought on by the NSAIDS used to treat sudden onset ankylosing spondylitis. Luckily a course of prednisolone brought both conditions under control, although they both started returning in December, a fortnight after stopping the steroids.


I decided to start the SCD diet at New Year and 3 days into it my stools became much firmer and I was only going once or twice a day. However, my mouth ulcers and anal fissure returned a week ago (along with a continued worsening of neck/back pain) so I had my bloods and faecal calprotectin checked. The results are so much better than they were during last yearís flare - CRP only 15 and calprotectin 200 Ė but the ulcers and fissure not that much better than before.


Do you think my results are less dramatic because of the SCD diet? And why do I have ulcers and a fissure when my diarrhoea has stopped and Crohnís markers arenít that high?
02-12-2017, 06:26 PM   #2
my little penguin
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What are you using to treat the ankylosiing spondyloarthritis(AS)?
The disease is very progressive and needs treatment as well
Scd diet or any other diet can not be used for treatment of AS .
AS flares can cause your Crohns to flare as well
Tagging maya142

http://www.spondylitis.org/Ankylosing-Spondylitis
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02-12-2017, 07:08 PM   #3
Maya142
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Ankylosing Spondylitis, like Crohn's, is a progressive disease. It needs to be treated to prevent complications like joint damage and fusion. It can even impact organs, such as your heart.

My husband has AS and has had it for many years. At the time, the only treatment was NSAIDs. They helped with the pain but the disease kept progressing, to the point where his hips were destroyed and he could barely walk. He had his first hip replacement in his 30s and has had 4 others. He also had a partially fused spine and ankle. His ankle is so destroyed that doctors think they won't be able to replace it.

It is not something you want - believe me. Now there are better treatments - biologics. Both my girls has AS too and have been on biologics for years. No side effects at all. My older daughter is doing GREAT - very little damage to her joints - and she is a normal, happy young adult. My younger daughter has had a harder time but we are slowly getting her AS under control.

Both Crohn's and AS will progress if left unchecked. If you leave Crohn's untreated, you risk fistulae, abscesses, strictures etc. With treatment, the risks of these things goes down.

The only treatment for both Crohn's and AS is biologics (anti-TNFs like Remicade and Humira).

The SCD does work for some people, but doesn't for others. Crohn's can continue to cause damage even if your asymptomatic - as long as there is still inflammation, the Crohn's is still active.

Since your scopes show active Crohn's, I think it's safe to say the SCD is not working for you. I would urge you to get a second opinion and treat BOTH diseases.
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
02-13-2017, 06:33 AM   #4
sheffieldruss
 
Join Date: Oct 2016
Location: sheffield, United Kingdom
Thanks very much to you both. I am also seeing a rheumatologist, and as the AS has returned expect to be discussing biologics with her when I next see her in a couple of weeks.

Sadly my gastro team didn't take my concern about AS seriously so I started the prednisolone before having a spine and SIJ MRI. I did have one just as I was stopping the steroids, but by then all my symptoms had gone and the scan was clear.

I tried the SCD as while I was keeping my partner company on a Paleo diet trial a year ago and my bowels were the best they'd been decades (this was before I had any idea there was anything wrong with me). There is also a No Starch diet similar to the SCD for AS so I thought I might be able to kill two birds with one diet stone.

I've not had a scope for many months but clearly the SCD hasn't completely sorted me out, but I wanted to give it a try after last year's Paleo success. And I'd hoped that neither my Crohns or AS were likely to be too severe as 53 is pretty old to be diagnosed with either illness!
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