Guest guest Posted March 9, 2010 Report Share Posted March 9, 2010 Wow. Sounds like you founds something that works for you. It makes me wonder about myself. I crave sunlight like I'm thirsty. I live near Seattle and most days (except maybe a handful every month) this time of year there are think clouds overhead. You can't see shadows from things, and the lights inside the house are often brighter than the light coming from outside. I have been taking Vitamin D for a couple years. Along with some other things it helped my hair grow back. But I wonder how much better my body would heal in sunlight? I was going to go to Arizona to visit a friend this year, but with being sick, I haven't had a break from school since I was diagnosed last June. All my work ends up taking longer so I have no days off by the time I make up work from previous quarter/etc. I miss sunshine sooo much! I had this feeling like if I could just get somewhere sunny I could heal, but then, I am too weak to take care of myself right now, so I'll have to wait to test that theory. Congrats on getting yourself on the road to recovery! Kat 27 UC since June '09 SCD since Feb '10 Prednison 5mg, rhodiola rosea, iron, other suppliments, probiotics > > I have been SCD for 5 months now and although I haven't had a flare up since thank God, there were definitely some times where I felt tenderness or had some diarhea! > > Anyway, I was low on vitamin B and D and the Dr. suggested a D supplement and a B shot but I decided I wanted to try and heal myself naturally. I went to a sunny island (strictly SCD) and have been taking D drops since and never went for the shots and guess what???? I just got my lab results back and the Dr.'s words were " remarkable " ! My B and D levels were normal and all my inflammation markers were back to normal/low levels!!!! > I have a great Dr. to actually referred me to this diet as an alternative to meds but even he said that he didn't expect this good results this soon!!!! > > I'm cautiously optimisitc because I know there are sometimes bumps in the road with this diet but I pray they are non existent or very few. In the meantime, I feel awesome and so validated that the Dr. was so impressed with my results. Oh...and I'm barely anemic anymore, just slightly below normal! > > Thanx to all of you on this group who gave me support when I needed it I hope this gives hope to those of you who need it!!! What an awesome day! > Becky > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2010 Report Share Posted March 9, 2010 Congratulations!!! I really appreciate the encouraging story. Maybe a sunny island is what I need! > > I have been SCD for 5 months now and although I haven't had a flare up since thank God, there were definitely some times where I felt tenderness or had some diarhea! > > Anyway, I was low on vitamin B and D and the Dr. suggested a D supplement and a B shot but I decided I wanted to try and heal myself naturally. I went to a sunny island (strictly SCD) and have been taking D drops since and never went for the shots and guess what???? I just got my lab results back and the Dr.'s words were " remarkable " ! My B and D levels were normal and all my inflammation markers were back to normal/low levels!!!! > I have a great Dr. to actually referred me to this diet as an alternative to meds but even he said that he didn't expect this good results this soon!!!! > > I'm cautiously optimisitc because I know there are sometimes bumps in the road with this diet but I pray they are non existent or very few. In the meantime, I feel awesome and so validated that the Dr. was so impressed with my results. Oh...and I'm barely anemic anymore, just slightly below normal! > > Thanx to all of you on this group who gave me support when I needed it I hope this gives hope to those of you who need it!!! What an awesome day! > Becky > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2010 Report Share Posted March 9, 2010 Kat, you take Rhodiola? I used to take that along with Ashwaghanda and Cordyceps for my adrenals but stopped because I could not figure out if they are SCD legal. > > > > I have been SCD for 5 months now and although I haven't had a flare up since thank God, there were definitely some times where I felt tenderness or had some diarhea! > > > > Anyway, I was low on vitamin B and D and the Dr. suggested a D supplement and a B shot but I decided I wanted to try and heal myself naturally. I went to a sunny island (strictly SCD) and have been taking D drops since and never went for the shots and guess what???? I just got my lab results back and the Dr.'s words were " remarkable " ! My B and D levels were normal and all my inflammation markers were back to normal/low levels!!!! > > I have a great Dr. to actually referred me to this diet as an alternative to meds but even he said that he didn't expect this good results this soon!!!! > > > > I'm cautiously optimisitc because I know there are sometimes bumps in the road with this diet but I pray they are non existent or very few. In the meantime, I feel awesome and so validated that the Dr. was so impressed with my results. Oh...and I'm barely anemic anymore, just slightly below normal! > > > > Thanx to all of you on this group who gave me support when I needed it I hope this gives hope to those of you who need it!!! What an awesome day! > > Becky > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2010 Report Share Posted March 9, 2010 Kat - are you taking vitamin D? Or vitamin D3? If you are craving sunshine that badly, you need to take vitamin D3 in high doses. And maybe think about transferring for next year, if that is at all feasible. Mara > Wow. Sounds like you founds something that works for you. It makes me wonder about myself. I crave sunlight like I'm thirsty. I live near Seattle and most days (except maybe a handful every month) this time of year there are think clouds overhead. You can't see shadows from things, and the lights inside the house are often brighter than the light coming from outside. I have been taking Vitamin D for a couple years. Along with some other things it helped my hair grow back. But I wonder how much better my body would heal in sunlight? I was going to go to Arizona to visit a friend this year, but with being sick, I haven't had a break from school since I was diagnosed last June. All my work ends up taking longer so I have no days off by the time I make up work from previous quarter/etc. I miss sunshine sooo much! I had this feeling like if I could just get somewhere sunny I could heal, but then, I am too weak to take care of myself right now, so I'll have to wait to test that theo! > ry. Congrats on getting yourself on the road to recovery! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2010 Report Share Posted March 10, 2010 > > Kat - are you taking vitamin D? Or vitamin D3? > If you are craving sunshine that badly, you need to take > vitamin D3 in high doses. Hi Mara, Yes, I'm taking vitamin D3 at 10,000 IUs/day right now. I was prescribed 5,000/day three years ago for four years of hair loss with alopecia. I had tons of other autoimmune skins disorders at the time too. I was also prescribed Nordic Naturals cod liver oil, biotin (5,000mcg/day), and evening primrose oil. The oils are for omega fatty acids. My hair did grow back almost all the way! But unfortunately has started coming out again since I became very anemic and got worse after I was put on prednisone. Anyway, yes. I'm on D3. I just read an article that said that cholesterol is also needed as a precursor to utilize D3 to make the hormone calcitriol, which is the fully activated form. I know I am not digesting fats well - I tried a fatty piece of steak a couple days ago as sort of a test, and I did not absorb much of the fat if any. I haven't been able to fast for the blood test to find out how my cholesterol is doing but intend to do that soon. I wonder if this could be a factor too. Or, if I am just not absorbing the vitamin D to begin with because I am not absorbing fats very well? > And maybe think about transferring for next year, if that > is at all feasible. > > Mara > I'm done, if all goes well, after summer quarter. I have to pick back up my work tutoring if I am well enough to then before I can support myself while paying of pretty massive loans, but I do intend to move to AZ (or Cali) as soon as I can - probably next spring. I have a feeling there is more to getting enough sunlight than taking D3 orally, at least for me. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2010 Report Share Posted March 10, 2010 > > Kat, you take Rhodiola? I used to take that along with Ashwaghanda and Cordyceps for my adrenals but stopped because I could not figure out if they are SCD legal. > Yeah, I'm not sure. I have the kind that is just the rhodiola plus capsule, maybe some gellatin. My naturopath prescribed it and was the one to suggest the diet, and checked all my meds to make sure they were legal. But other than that I have no idea. I haven't reacted to it adversely I don't think. I'm still bleeding so I really won't know for sure about anything until that stops. I didn't think tiny bits of things would be a big deal, but I recently reacted to (I think) a new brand of iron suppliment that my doc says is most easily absorbed, but which has both spirulina and soy products. I guess a little bit does go a long way! Or that I have an intollerance I suppose. My doc also just attended a conference where she learned about DHEA, which counters the effects of prednisone without compromising it's effectiveness. It is a precursor to testosterone, estrogen and cortisol among other things. I started it yesterday and I went from barely being able to move, pain everywhere, especially in joints from the P, to having energy all day today! I am only on 5mg P and 5mg DHEA, but the P had wiped me out to the point of blurry vision, inability to concentrate, recall or remember information, etc. Today is totally different - all that is coming back. For anyone who is feeling the icky stick side effects of prednisone, this DHEA stuff seems to work for me pretty well. Kat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2010 Report Share Posted March 11, 2010 Lame. Sorry for all the bad weather! I still bet you have the better end of the stick though - from October to March, I'd say a good 50% of days are completely cloudy with no sun whatsoever, and this time of year (late Feb to mid-Apr) we get about 10% to 20% sunny days (or partly cloudy I guess). Not uncommon to not see the sun for a good week straight. So I guess we didn't steal your sunshine...the culprit is still at large! > > You don't want to be in Arizona right now, because it's been cloudy and rainy for days! We've gotten more rain in the first two months of the year then we did all of last year, and all of the reservoirs are full (definitely a good thing). But I want my sunshine back! > > Holly > Crohn's > SCD 12/01/08 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2010 Report Share Posted March 11, 2010 Kat,That is pretty interesting about the DHEA! So would you say that the amount of DHEA required is equal to the Prednisone being taken? If you have any literature/studies links, I would be interested in reading them. If not, no worries, just curious--would like to know for a future 'just in case' scenario.AmeliaTo: BTVC-SCD Sent: Thu, March 11, 2010 7:59:06 AMSubject: Re: amazing results!!! > > Kat, you take Rhodiola? I used to take that along with Ashwaghanda and Cordyceps for my adrenals but stopped because I could not figure out if they are SCD legal. > Yeah, I'm not sure. I have the kind that is just the rhodiola plus capsule, maybe some gellatin. My naturopath prescribed it and was the one to suggest the diet, and checked all my meds to make sure they were legal. But other than that I have no idea. I haven't reacted to it adversely I don't think. I'm still bleeding so I really won't know for sure about anything until that stops. I didn't think tiny bits of things would be a big deal, but I recently reacted to (I think) a new brand of iron suppliment that my doc says is most easily absorbed, but which has both spirulina and soy products. I guess a little bit does go a long way! Or that I have an intollerance I suppose. My doc also just attended a conference where she learned about DHEA, which counters the effects of prednisone without compromising it's effectiveness. It is a precursor to testosterone, estrogen and cortisol among other things. I started it yesterday and I went from barely being able to move, pain everywhere, especially in joints from the P, to having energy all day today! I am only on 5mg P and 5mg DHEA, but the P had wiped me out to the point of blurry vision, inability to concentrate, recall or remember information, etc. Today is totally different - all that is coming back. For anyone who is feeling the icky stick side effects of prednisone, this DHEA stuff seems to work for me pretty well. Kat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2010 Report Share Posted March 11, 2010 Kat, Iron supplements feed bad bacteria. Perhaps that is why you reacted. > > > > Kat, you take Rhodiola? I used to take that along with Ashwaghanda and Cordyceps for my adrenals but stopped because I could not figure out if they are SCD legal. > > > > Yeah, I'm not sure. I have the kind that is just the rhodiola plus capsule, maybe some gellatin. My naturopath prescribed it and was the one to suggest the diet, and checked all my meds to make sure they were legal. But other than that I have no idea. I haven't reacted to it adversely I don't think. I'm still bleeding so I really won't know for sure about anything until that stops. > > I didn't think tiny bits of things would be a big deal, but I recently reacted to (I think) a new brand of iron suppliment that my doc says is most easily absorbed, but which has both spirulina and soy products. I guess a little bit does go a long way! Or that I have an intollerance I suppose. > > My doc also just attended a conference where she learned about DHEA, which counters the effects of prednisone without compromising it's effectiveness. It is a precursor to testosterone, estrogen and cortisol among other things. I started it yesterday and I went from barely being able to move, pain everywhere, especially in joints from the P, to having energy all day today! I am only on 5mg P and 5mg DHEA, but the P had wiped me out to the point of blurry vision, inability to concentrate, recall or remember information, etc. Today is totally different - all that is coming back. For anyone who is feeling the icky stick side effects of prednisone, this DHEA stuff seems to work for me pretty well. > > Kat > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2010 Report Share Posted March 12, 2010 If you have to take iron, perhaps something like this would go over better: http://www.vitaminlife.com/product-exec/product_id/12118/nm/Gentle+Iron . I've read that chelated iron (or iron Ferrous Bisglycinate) is much better on the gut, and easily absorbed (less food for gut bugs). Holly Crohn's SCD 12/01/08 > > > > Kat, Iron supplements feed bad bacteria. Perhaps that is why you reacted. > > > > > > I've been taking iron supplements since December due to the continued bleeding. It has been believed by both my gastroenterologist and my naturopath that started me on SCD that the risk of feeding the bad bacteria was less than the risk of letting me get more anemic, especially since I am symptomatic of anemia even when the numbers are fairly high but not normal - fainting, fatigue, all that. > > I keep thinking I should stop taking the supplements, but I am still losing a little blood every day. I am eating beef, I can tolerate beef liver, but I don't know that the amount of iron in those would make up for what I am losing in my stool. The treatment plan was to keep me on the iron supplements until my anemia was totally gone (just got some ferretin levels to get up at this point - all else normal!), then stop the supplements. > > Do you think this is possibly a more harmful way to go? My thinking is that the faster I can kill off the bacteria the better, even if it means I have to get an iron shot - I have heard people get those - I'm a little afraid of the pain, but I can deal with it. I am worried about prolonging the battle in my guts and causing more harm. I would rather lose a little iron intake personally and instead stop bleeding, but feel weird going against what my doctor recommended, and looking at my record, the bleeding probably won't stop anyway, at least for some time. If the bacteria are not getting too much carbs anymore, will the iron really make a difference? > > Ack! Too many questions. Thanks everyone for helping me figure this out! > > Kat > Quote Link to comment Share on other sites More sharing options...
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