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A Cautionary Tale


Super Moderator
Wow, didn’t realise how long it had been since I have visited. 😬

So S, now 28, moved from Japan to the US at the beginning of 2018 and by the end of the year she was flaring. 😞 She had not been on medication for about 9 years. Suffice it to say the first GI/practice was hopeless. In December of that year they put her on Pred and a 5ASA as a monotherapy. Advised her to get out of there ASAP but by the time she was able to get things sorted she ended up being on Pred for 5-6 months. 😩

New GI commenced her on Humira at about the 3 month mark. All good with the Crohn’s side of things now.

Now, at the time of the flare she had symptoms that persisted throughout and following the settling of her intestinal symptoms and they became progressively worse. The symptoms were joint pain that was bad enough she could not walk up stairs, sore eyes to the point that on some days she could not drive, and excessive hair loss.

She went to the GI and Opthalomologists numerous times to no avail and was awaiting a rheumatology appointment. By now it was August 2019. To say I was worried would be an understatement especially with her being so far away. I wanted her to come home for review and she did that month.

Once home the GP ran all the usual tests we normally do for her Crohn’s plus some extras as one of the Opthalmologists queried Sjogrens. All returned normal except for one. Everything pointed to her Crohn’s being in clinical remission with the one outlier being her Vit D, it was low. Not exceptionally so when looking at NRR but I think they are set too low in the context of chronic disease.

Given the severity of her symptoms I was doubtful but hopeful that Vit D would be the answer so she started taking 10,000 units a day. Fast forward to 3 months later, November 2019, and all the persisting symptoms had resolved. She said she felt like she had gone from an 87 year old to a 27 year old

I have stressed to her that she needs to be the manager of her health especially as the system there is different to ours, it is more fragmented. That she co ordinate her care and stay on top of results. It turned out that when they did her Vit D in Dec 2018 it was undectable, they didn’t tell her that just that it was a bit low. They supplemented for a few weeks and then no follow up, no repeat blood test, no nothing. Grrrrrrrrrr.

Main thing is all has remained under control since. 😊

I hope you are all coping okay particularly in these very trying times. I do feel for you all and think of you often and hope for those in the US you soon see an end to the devastating COVID figures. ❤
I am so glad you came back to tell us this story - thank God she is ok. I also wonder what about her return to North America might have set off the Crohn's.
I am buying Vitamin D for my H tomorrow! We always wait until she has tested low to supplement. Going to stay on top of it.
Undetectable and not advised! I am hopping mad to hear that but also know how often this sort of thing happens.

my little penguin

Staff member
Ugh sorry she had such a bad experience
Adult Gi are very different in the US than the ped Gi
Glad she was able to get things under control with humira and vitamin D
Ds takes vitamin D daily regardless
And we just remind the Gi to follow it to make sure it isn’t too much
Patient Portals are your friend here in the US
All bloodwork and test results are in patient portals
Better to check than rely on the office to check ;)


Super Moderator
@Pilgrim - I think perhaps she was treading water for quite some time and the move and very different diet probably tipped her over the edge.

@mlp - yeah, Vit D should be stock standard for her and I have always wanted her to aim to be at the upper limit of normal at all times. I think taking control of things herself and being on top of things fell by the wayside. A very hard lesson learnt.
It has been made more difficult with her not knowing and understanding the system and me not knowing or understanding either! 😩
DustyKat, I feel like you are somewhat of a famous person on this forum. I have heard about you and have read many of your posts when I was searching for answers. Thank you for sharing. :)


Well-known member
I'm on a course of pred. (6wks tapering) and was prescribed Vit D3 to take while doing so.Both my hub. and I take it daily anyway,but the ones 'scribed with the pred. are stronger.....Welcome back DK....


Staff member
New York, USA
Even though I am in clinical remission, my vitamin D is almost always low. I'm bad about taking my supplement, nut have a refill waiting to get picked up at the pharmacy today.....I do get my levels checked once a year, which will be done at my next infusion in 8 weeks.

Glad to hear S is doing better!


Well-known member
I forget the exact numbers but here in the U.S. anyway they say upwards of 75% of people test low for vitamin D.

Glad to have you back Dusty! @Jo-mom she is the thing of legends around here!

Is she back in the U.S.? I hope she is staying safe wherever she is.


Super Moderator
@Jo-mom—awwww, thank you

@scottsma - yeah, S was on a high dose for a few weeks with the Pred. Shame they didn’t keep onto it. Hope you are responding to the Pred and things are settling. ❤

@Lisa - So fab to hear you are clinical remission. 😊 Now don’t be like S, Lisa! Take your Vit D! 😆

@crohnsinct - thanks! 😊 We have the same issues here with Vit D. Not our latitude but a very successful covering up campaign that has been around for 30+ years to reduce skin cancer.
Doubly hard for crohnies with the meds they are on and for those with ileocaecal resections that have issues with absorbing fat soluble vitamins.
She is back in the US. She was only out for visit last year. Now in Colorado and so far so good but the COVID numbers over there do freak me out. 😳


Staff member
So glad she is back on track!! But so worrying for you being so far away... and, I'm sure she was badly missing your advice and support! Glad she's doing so much better!

A good reminder! I'll be asking my S if he is still taking his vit D. And, at his next GI follow up in October, I'll ask if he can test levels. What dose is she taking now? Does she take liquid or pills? I've always given S the liquid because I'd read that it is more easily absorbed??
Nice to see you back I've wondered how your kids are doing. I only pop in occasionally myself but I always say I'm going to do better.
I'm going to see if I can get Jack back on Vitamin D, he was taking it a few years ago because he was pretty low. When he was home from university over the summer I noticed his eczema was back but all his blood work was fine and he said he felt great.
Glad she is back to feeling good. My younger son goes to college in Colorado and where he is COVID is really low and the college is doing a great job with its response. Jack's not so much in fact I told him to consider taking semester/year off but he's so close to being done he didn't want to.