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Vitamin D: a warning

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Ulcerative Colitis
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Posted 7/27/2016 6:55 PM (GMT 0)
I haven't posted here in some time as I've been happily in remission for 3 years, during which I have not had one single problem with my bowels. Anyway, recently I was having some knee pain and my doctor checked my vitamin D levels and they were low, so she gave me some extra-high-dose vitamin D pills to be taken once a week. After one week, I was feeling a little bunged up. After two weeks, there was a weird squishy feeling in my colon when pooping. Three weeks later? A whole weekend of non-stop stomach cramps which have turned into a fairly unpleasant flare. I am, um, gutted.

Neither the doctor nor I had any idea this would happen, so I just thought I'd post it as a data point in case anyone else in remission is contemplating taking large doses of vit D. WOULD NOT RECOMMEND. ;(
Posted 7/27/2016 7:06 PM (GMT 0)
Do you feel better now that you stopped taking it?
Are you going to try nicotine again to calm your flare?

And I am guessing that it was prescription based Vitamin D. Vitamin D2? like 60,000 or 100,000 IU per dose?
Posted 7/27/2016 7:08 PM (GMT 0)
Sorry to hear you're struggling. Could you tell us a little bit more, what dose and brand of vitamin D were you prescribed?
Posted 7/27/2016 7:27 PM (GMT 0)
D3 20,000 unit capsules, one a week. I've just had the three doses. Obviously I shan't be taking any this week! But I am most definitely having a flare now and I don't think it's going to be easy to stop. There is a lot of mucus and my usual lovely Bristol scale score of 3 is down to a 5 at best.

I've only been flaring since Friday. Last two days I've had VSL, have smoked two cigarettes a day (yuck) and have abandoned all my favourite spicy and sugary foods. I guess I'll see how that goes. ;( ;(

It is horrible to have it back again. I didn't miss it at all smilewinkgrin
Posted 7/27/2016 7:39 PM (GMT 0)
Are you still using nicotine? I wonder if it's a chicken and egg thing. Did the D cause thef lare, or were you abour to flare and the low D was a sign? Interesting though. I was always deficient of vitamin D, but regardless of whether I took it or not, nothing changed with my UC.
Posted 7/27/2016 8:07 PM (GMT 0)
notsosicklygirl: I wondered that too. I have been very slack with the nicotine over the last couple of months. But there was no gut pain or anything like it until I had the big vit D doses, so I'm fairly sure they're connected.
Posted 7/27/2016 8:11 PM (GMT 0)
DutchessCountyJim: the knee pain is in both knees & it hurts to climb stairs, or squat, but neither knee is inflamed, and I've got no other joint pain. (Yet!) I got them checked out by a physio and she suggested it might be a vitamin deficiency, hence the blood tests & the vitamin D.
Posted 7/27/2016 8:13 PM (GMT 0)
sounds like it wasn't just the D - also sounds like an easy way back to wellness colon wise - you should be back to your old self soon !
Posted 7/27/2016 9:22 PM (GMT 0)
juststud: not so sure about easy, but thanks for the encouragement!
Posted 7/27/2016 10:41 PM (GMT 0)
i had 50,000 IU tablets 1 a week for 4 weeks. once in 2012 and again in 2015.

fortunately did not make symptoms worse
Posted 7/28/2016 2:08 AM (GMT 0)
I got violently sick from 50,000-unit dose (softgel) vit D Rx several yrs back, verging on anaphylaxis. Turned out I was allergic to calcitriol-- so YES, you are right to warn others about megadoses. I hope you get back on track soon. / Old Hat (35 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 7/28/2016 3:37 AM (GMT 0)
Fishface, so is nicotine therapy helping you out with the symptoms?
I tried the patches last year but it didn't do anything for me but the menthol cigarettes definitely did.

If I had to choose between Prednisone+Biologics vs. 2-3 cigarettes a day.... I'd go with cigarettes 100%.
Posted 7/28/2016 2:05 PM (GMT 0)
Old Hat: I shall mention that to my GP, & thanks for the good wishes :)

Tropitude: when I was in my last two-year-long flare I tried nicotine gum and then vaping, but neither of those worked. So I bought a pack of cigarettes. One week of three a day and the bleeding and diarrhoea had stopped, & a month later all UC symptoms were gone. It was pretty amazing, as there was quite a lot of blood daily, not just spots.
For the last three years I've tried to have three cigs a day but it's snuck down to one and then one every few days, but I still had no symptoms at all until I took the vit D. Symptoms at the moment are nasty but it's only just started - hoping it will calm down :/
Totally agree on the pred/biologics vs. cigs, especially as I can't have pred anyway. Are you still smoking? Is it helping? I'm hoping it's not like a one-time-only magic thing.
Posted 7/28/2016 6:08 PM (GMT 0)
Hi fishface,

I just started smoking again last night. It's too early to tell whether it's helping me or not but I'm going to give it more time.

There's a reason why I stopped smoking more than 2 or 3 cigarettes a week.

I own a business that ends a little after 10pm and it promotes healthy lifestyle. Then I go to the gym around 11pm and I leave around 1 or 2am.

I feel so good after coming out the gym to the point that I just don't want to smoke after all that pump. I also hate the fact that I MUST do something that I don't like in order to get something else. This is how I felt about smoking cigarettes.

You know... the funny thing the menthol cigarettes is that smoking actually gets my digestion going, sobers me up after drinking, got me out of my previous flare, felt like it got me out of this slight depression phase that I was experiencing at night...

Yes, smoking > biologics

I really hope it works for you again this time. If you don't mind my asking, which brand do you smoke?
I used to smoke Marlboro Menthol(not the gold one) then switched over to Marlboro Ice blast then finally to Bohem Cigar Cubana Double(menthol)
Posted 7/28/2016 6:55 PM (GMT 0)
I'm someone who has big problems with vitamin D. I cannot take more than the recommended dose, so when people say I should take a huge dose, like more than 1,000 IU, I bulk at the dose.

If I take over that dose every day (just vitamin D, nothing else in the pill), I get diarrhea, even though I was great before taking the vitamin. I don't know why.
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