I am a chronic pouchitis sufferer and my vitamin D level hovers around 30 without supplements. I take 4800 iu vitamin D daily.

Jon,
Chicken or egg?
Is it the low vit D levels that you suspect are causing the pouchitis or is it the pouchitis (possibly just simmering in the begining) that makes the absorbtion of Ds more difficult?
Sharon

The truth is regardless of whether IBD or pouchitis still exists in the small bowel, there is less intestine through which to absorb nutrients than there is with a colon. If pouchitis exists, that is in the J Pouch which is just a fraction of the length of the entire intestinal tract even of a J Poucher.

Is it known how much absorption of nutrients or what percentage is done through the J Pouch?

There are other threads on vitamin D and many people who have low vitamin D have no IBD issues at all, they just don't get enough sunlight or live in regions of the world where it rains too much, like the American northwest/Canadian southwestern areas. Seattle Vancouver etc. I dated a woman who lived in Seattle and moved to CT and she had to be treated for seasonal affective disorder which I had previously never heard of, but the treatment is basically vitamin D supps and sunlight.

Good point, Sharon, it's hard to tell what causes what. I have read stories where people with UC/pouchitis did better when their D levels were 60+. I remember having low numbers even when I still had my colon.

DJB, that's absolutely right that there are plenty of people who live in northern latitudes who have low D and do not have ulcerative colitis. However, there is a higher incidence of Crohn's/UC in northern Europe, Canada, and parts of the U.S. when compared to other regions. It is especially prevalent in Scandinavia. Of course there could be some sort of genetic disposition for IBD, but I do find it rather intriguing that there seems to be more of it in areas with less sunlight.

This is a topic with much in the way of emerging data and evidence and they really do not know what the cause and effect of vitamin D deficiency is in relation to IBD. Does one cause the other, or is there a modulating effect (such as low vitamin D levels worsening IBD or otherwise affecting the disease course). This is all very recent in the last 5-10 years, so I would expect the theories to bounce around before they know anything specific.

For now, they seem to be saying that improving vitamin D levels cannot hurt, and may help reduce autoimmune inflammation.

Here is a link to a long, but interesting article:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3036961/

Jan

Thanks as always, Jan, for your wise counsel. I look forward to reading it.

I was just "diagnosed" with Vitamin D "insufficiency"... I am not IBD, nor Crohns, but Gardner's Syndrome. As for where in the world exists more or less Crohns... It is very dependent upon the documentation and access to information along with the education/training quality of the Medical practitioners in each country. I live in Mexico. I am "American", born in Philadelphia, raised in New Jersey, college educated in Amherst Massachussetts... And living here in Guadalajara, Mexico with FAP/Gardner's/J-Pouch and now "diagnosed" with hypertension and vitamin D "insufficiency". Some of you talk about taking between 5,000 and 50,000 UIs of Vitamin D. Imagine living here in Mexico where the highest dosage found in the farmacies and GNC are 400UIs at a higher price here than the 5,000UIs sold in the U.S. How would you do that? You wouldn't.

About the lack of elevation of your Vitamin D. Are you/were you taking D2 or D3? D2 is about to be removed from the U.S. market since it 500xs slower at being processed by the human body, if it actually functions. The human body produces D3... GNC U.S sells D3 between 2,000 and 5,000 IUs. GNC Mexico only sells 100 capsul bottles of D2 400IU at the same price as GNC U.S.'s 180 capsule D3 5,000 IU...

As for malabsorption of Vitamin D and the J-Pouch... The J-Pouch is constructed using the former Ileum, which is the 3rd and last part of the small intestine. Vitamin D is absorbed in the Duodenum and the Jejenum (1st and 2nd parts of the small intestine). So, it's more probable that the IBDs and the Crohns have problems unrelated to the J-Pouch. Granted, the FAPs with Gardner's Syndrome have a risk of problems in the Duodenum...

As I mentioned, I live in Mexico; a ton of sun from February until November... However, if you live in hot/sunny climates, you may opt for not finding yourself in direct sunlight, since you find yourself hot enough in the shade; I became accustomed to walk on the shady side of the street because my wife (from the mountains of Veracruz) prefers being in the shade... I've never been a sunbather either.

Plus, if you wear sunscreen during the sunny seasons, you will not produce Vitamin D. Today, most people avoid the sun due to fear of skin cancer. Now, after reading all I have read about Vitamin D deficiency, I would be more afraid of the deficiency that can cause up to 18 different cancers, along with kidney failure/ heart disease/heart attacks/anneurisms/strokes due to hypertension caused by Vitamin D deficiency, auto-immune problems, chronic fatigue, Alzheimers/memory problems/depression/nervous disorders, stress fractures due to muscle fatigue, bone weakening/bone deformation/osteoporosis all due to calcium deficiencies: WITHOUT VITAMIN D YOU DO NOT ABSORB CALCIUM.

So, maybe you should risk skin cancer.

Here are the RDA recommendations (although they are considered horribly low and incorrect):

0-10NDs of Vitamin D: Deficiency

10-20 NDs: Insufficiency

30-50 NDs: Normal

400-600 IUs daily requirement.

Now, what I've been reading amongst the health and nutrition specialists and in the exercise magazines such as Runners World where there are many cases of world class runners suffering stress fractures, broken bones and horrible muscle fatigue not knowing that they have a vitamin D count of between 15 and 19, the recommended daily dose is 5,000 IUs (and you can't get that in your diet). What the RDA says is insufficient is actually deficient and puts you at horrible risk. What is considered normal is actually "at risk" or insuffficient. And your numbers should be between 50-70.

I went to a GI for for an upper endoscopy. The GI was the president for the Mexican Association of Gastro Enterologists (one of 3 liver transplanters here in Guadalajara) and even met my "super-star" world leader or pioneer in J-Pouch surgeries Dr. Gorstein of Mount Sinai Hospital in New York. However, my GI told me that the J-Pouch automatically removes the ability to absorb ALL B vitamins; which is not correct and prescribed a B12 injection without prescribing blood tests or knowing my levels, and he told me I didn't need an Upper Endoscopy although 7 years ago I was diagnosed with 2 ulcers in my stomach, gastritis, duodenitis and an inflamed gall bladder due to gall stones (that I diminished with my own self-prescribed dietary change). He also said that I didn't need an ultrasound, althoug I told him of discomfort in the region of the gallbladder and a strange and new discomfort behind my left rib cage/stomach I thought was from the ulcers, but is generally caused by kidney stones... Without his suggestion I went to a laboratory and requested an Ultrasound and blood tests. The ultrasound showed that my gallbladder was normal and only had 3 gallstones (thanks to my diet change plus grapefruit juice and olive oil half hour before breakfast and Coriander seeds soaked in water; very bitter, soy lecithin if I am correct, although that may have just been for my hypertension--it was a long time ago). My kideys are clean; no problems with my spleen nor my pancreas... My B12 was over 2,000! and my Vitamin D was 18.5... The day after injecting myself with the B12, I started experiencing horrible fatigue in my calves, my ankles and the arch of my feet and later on, my left thigh muscle while running. Now I walk/run without my shirt on at midday:-)

The GI sent me to a Cardiologist because of high blood pressure the GI claimed was caused by hypertension of the Kidney. However, kidneys don't cause hypertension; kidney disease is caused by hypertension.

I was NEVER diagnosed with hypertension when living in NYC, nor when I had my surgeries at Mount Sinai Hospital. The cardiologist here in Guadalajara said that I would be on BP medication for the rest of my life. And, although I have problems retaining water due to the Colectomy and then the J-Pouch (I go to the bathroom at least 15 times a day and usually sitting), he prescribed a BP medication (Micardis) that lowers blood pressure and is a diuretic. Now, we all know that diarhea lowers potassium levels. Potassium deficiency raises blood pressure and can cause heart attacks... Vitamin D deficiency also raises blood pressure. So, why didn't he ask for blood tests before prescribing me the medication? and he prescribed the highest dosage. Plus this medication normally is prescribed for people who have recently had angioplasties and had problems with their heart attack BP medication. Own arm had a BP of 170/100, the other had a BP of 160/90. He said that I was in the mid-range, not at heavy risk of heart failure.

The worst thing was that, without checking my kidneys for kidney stones or kidney disease he suggested that my discomforts were from muscle pain and prescribed a pain reliever banned by the FDA due to high risks of Heart Attacks! What Cardiologist would prescribe a medicine banned in the U.S. because it creates a high risk of Heart Attack?

I have a whole bunch of tests scheduled for the forth to see if the BP meds are causing problems for with my Kidneys and Liver; the next appointment with the Cardiologist is for the 7th to analyze those findings.

I figure I will do all of that, especially since I want to know how are my urine tests, cholestorol tests and other tests, pay the cardiologist, receive his prescription and suggestions and forget about the BP meds and his office. I will buy a BP monitor, continue with my wonderful diet/cooking, exercize without a shirt on for an hour and a half, take the little Vitamin D suppliments I find here along with Calcium and test myself for Vitamin D in mid to late January...

I am almost positive that the hypertension is caused by the vitamin D deficiency. But we will see in a month :-)

Ross

My most recent Vitamin D level was less than 4. The doctor treated it like it was nothing. I wonder if this is why I am so sick and in pain.

Sounds horrible! very strange that your doctor treated it like it was nothing... time to see another doctor. 4 is not a risk; it is extremely dangerous. Who suggested the test for Vitamin D? it couldn't have been the same doctor who treated it like it was nothing, otherwise they wouldn't have asked for the test.

Ross

I found this when I put in Google "Vitamin D of 4". the URL says level of 41, however it's actually "level of 4!"

http://www.easy-immune-health....n-d-level-of-41.html

Thank you for the article. It explains a lot. I have scheduled appts with a primary care doc and a GI with another vitamin D test 1 week ahead of the appts so both docs will have the test results. The primary care doc is usually a tiger about taking care of his patients so he will be a good advocate against the gi if I need it.

I wish you luck...

My doctors here in New York actually did a study on this topic and yes, they did find that higher VIT D levels equals less inflammation. I take over 40,000 units a week and still have a hard time getting past the high 40's, low 50's. My GI would like it higher, I'm trying...

Hi Ally Kat. I'm curious of the possibility we may have had the same doctors... I say this in past tense since I haven't seen my surgeon since just after he removed the colostomy bag. I had the J-Pouch surgery at Mount Sinai Hospital on the upper east side. Supposedly Dr. Gorstein is #1 in the field worldwide... However, I found him incredibly cold. No one mentioned to me in 2001 about the risk of malabsorption and deficiencies... I'm just learning about that risk. Granted, I am living in Mexico 10 years and don't have the luxury of flying to the U.S. every six months for medical check-ups nor for purchasing all of the wonderful suppliments and other products that may make it easier for us to live with the "aftermath" of these surgeries... For instance someone mentioned a wonderful yet expensive blender that actually breaks down or cuts the dietary fiber of the fruits and vegetables, making it that much easier for us to absorb the nutrients that normally pass directly to the toilet bowl do to excessive velocity passing through the digestive tract... Luxury technology removed from "American" shelves for different reasons arrives in Mexico with a price tag at least 5 times higher than its value... And what is found on the U.S. market is not found here (and it's not because there isn't money in Mexico... There is a ton of money in Mexico... I live in the city of BMWs, Audis, Lincoln and Cadillac trucks, Hummers and Mercedes... Guadalajara, Mexico's second largest city...) 40,000UIs of Vitamin D per week would cost me $8 USD or $416USD per year... If I am correct, that same amount of Vitamin D costs you $0.50 USD or 50 cents per week in the wealthiest country in the world and one of the most expensive cities... (Just to put things into perspective, Mexico is rated between #10 and #15 of the wealthiest countries in the world; there are many 1st world European nations with much smaller economies than Mexico)... So, here in Guadalajara there is a 1,600% inflation of cost. Imagine Daily that! You may say that 8 dollars per week isn't much for your health. However, if one must cover so many other daily/Monthly/yearly costs, it becomes quickly difficult to accept the "theft"... I am curious about the possible evolution of understanding of nutritional/health risks caused by the J-pouch surgery and if my surgeons alert their patients to this reality... It's possible or probable, had I known about all of this, I wouldn't have left the U.S. for living in Mexico. That said, I wouldn't have met my wife Margarita, grown as I have here... our marriage makes it virtually impossible that I would return to New York... It's nice "meeting" someone from New York City who had the same surgery I had 12 years ago in the same city...

Ross

The blender is called a vitamix.
I did have my original surgeries at Sinai but my surgeon was Dr Kys. I now use Dr Milsom and my GI is Dr Scherl over at Cornel. This Vit D was a research project of theirs.

Fortunate you! I wish I could be part of someone's Vitamin D project...

my understanding was 30 or better vit d levels is acceptable and taking more than 5000units a day actually discouraged because of what it might do to you adversely..

i have taken 4000 for few years got up to about 40 from 30..i actually did it to keep my osteoporosis in check and work with my calcium/mag,\. better

seems like everything is a crap shoot..your damned if you do and damned if you don`t!

These days reading about vitamin d deficiencies, vitamin E deficiencies, Vitamin B1 and B3 deficiencies... after experiencing my slip slid'n away down into what seems like some form of nerve-muscle issue (could it be peripheral neuropathy) waiting for the 10,000IUs of Vitamin D to arrive from the U.S., makes me think much about your statement, "you're damned if you do and you're damned if you don't"... Vitamin D deficiency by itself can cause a whole bunch of problems. But, I won't know if the problems are caused by the Vitamin D deficiency until I'm well into taking it... But, while reading all that I'm reading, (and boy do I wish I had studied Nutrition in college 20 years ago and not American History of Racism and Immigration)I'm realizing that it's much more complicated than just taking suppliments or buying a Vitamix Blender; which was delivered yesterday by the way... As some of you know, I'm "FAP/Gardner's Syndrome", very rare (actually I haven't met any of my family (FAP) members here)on this group, which means that "God" gave me a super self-destruct gene and I was supposed to die young as had my father, as had his mother... So, throw in a J-Pouch surgery and we slow down one aspect of that destiny while speeding up another... What's that other? It's something that I'm realizing reading about different illnesses that begin occuring after we enter our 40s... and, moreso, reading about the way various nutrients and absorption works in our bodies... Did you know that as you age, the acidity in your stomach decreases, making it more difficult to cause the chemical changes in B12 necessary? Almost all of the B vitamins are connected with obtaining energy from the food we ingest and with neurological funtion. And if we have a deficiency with one B vitamin, we will experience the chain reaction with the other B vitamins. Worse is that we obtain B3 by converting it from Triptophan. However, without B1, we don't convert the Triptophan to B3. We need Vitamin E for healthy nerves (for clear messaging from the brain to all of the various muscles in the body). Without Vitamin E we experience malabsorption problems and we suffer muscle fatigue and muscle pain. Our "intestines" don't work correctly. Nor does our heart... However, we can injest all the Vitamin E we wish. Without Vitamin B3, we won't absorb Vitamin E... You don't need functioning Duodenum for absorbing Vitamin D. You don't need an Ileum as it had been before being converted into a J-Pouch for absorbing Vitamin D. However, you do need that Ileum for absorbing the Vitamins D and you need that Duodenum or Jejunum functioning well for absorbing the Vitamin E and everything else... So what is the issue? Vitamin D deficiency immitates or parallels Vitamin E and Vitamins D deficiency? Or for us, is it something totally different even if we have the Vitamin D deficiency? I haven't checked my Vitamin E and here in Mexico they only check Vitamin B12. But, I'm almost 44-years-old and thinking that I entered that "slippery slope" where life has declared against the body the reality that it's time to self-destruct (if I weren't FAP/Gardners)... Ross

You can also look at it this way, that it is natural for the body to slow down and age, and none of us is designed to live forever. Of course, most of us do not get the faulty genes of FAP or IBD, but we all age.

The trick I guess is in living as well as we can while we are here.

Jan

I agree with you totally Jan... I believe that's part of what I was trying to explain that there is a point in one's life when absorption/metabolism changes and for a specific reason... like an easing into the process of dying. Scientifically, it is called entropy. The problem with those with illness, especially genetic disorders, is that, when we aren't ignoring the biological/physiological differences, we are reminded all too clearly of our immortality. We probably aren't so incredibly different than we have grown to believe... It's possible that we were just not given the luxury of being able to grow up "taking for granted" our falability or inmortality... I truly believe that when we enter our 40s and beyond, we find that so many people around us, in our age groups, are becoming "ill" in some form or another, and that most of those illness are lifestyle-caused. However, the problem is that most of these illnesses can't be reversed when they have become such that they draw the attention of the person or of their family members and decide to go for medical exams; Diabetes, Cardio-Vascular diseases...

I'm trying to work this stuff out in my mind; changing perspectives. Plus, I spent most of my FAP/Gardners Syndrome life not caring about my health and not actually thinking about what I ingested or what does it mean to be... or to ingest this or not ingest that... Fortunately, I have almost no tolerance to Alcohol. However, in reading about the different possible ailments caused by malabsorption etc, I've learned a ton about how alcoholism destroys the body... And, Cirosis or Hepatitis would be the least of my concerns if I were alcoholic or related to someone alcoholic. Granted, that's not the subject of the conversation. However, I do believe we can gain a ton learning about how vitamins and minerals (or lack there of) affect our bodies and the bodies of others... "We" could be so much less miserable.

Ross

New data is emerging all the time regarding nutrition, aging, health, etc., so all we can do is try to stay current and be willing to change with the changing information. The information about vitamin D is fairly new, so the medical community is still not clear on how far reaching the implications of deficiency is. Somehow, people managed to survive before they even began testing for it. So, now that I know I am deficient, I do what I can to boost it. My husband is deficient too, and he has his colon. Since going on supplements and getting my levels up, I really don't feel any different, so I am not sure what to make of it.

What concerns me is sometimes we focus so much on vitamins that have been determined to be necessary, we forget about the fact that those are only the ones that science have identified so far. There are probably hundreds or thousands of micronutrients that have yet to be identified, let alone figuring out what they do for us. That is why my focus is on fresh food and variety. I try to eat less packaged foods, but still struggle with portion control. Hopefully, that way I get what I need. Generally, vitamins are best absorbed in their natural state. Vitamin D is an odd one, since it is made in our skin.

I'm rambling now, but my point is I just don't have the energy or time to micromanage every molecule that enters my body. I like to spend my time having fun.

Jan

Well... yes.

alleycat there is a point where it is unsafe to take that much vit d..anything over 5000iu for long period of time..i think we rumn risk of galdstones..i understand its a painful issue..personally i do not think just vit d alone effects the inflammation in pouch..i think it is more complicated than that..

I never really heard of Vit D -pouchitis/IBD link until I learned I was deficient recently. I have had chronic refractory pouchitis for 2 years, and been treated with antibiotics and Entocort for 18 months. Each time I wean, I eventually flare, and now at max dose of Entocort plus a daily cort suppository, I barely teter on the edge of functionality. Scopes and labs show that compared to 18 months ago, disease severity has gone from mild-moderate to moderate, and 18 months ago I was managing with only every other day cort suppository, so clearly my inflammation/disease process is aggrevated. Labs showed my Vit D levels to be below the normal threshold this time, although they were not 18 months ago, nearer the start of my declining health. I am also in WI, so have been indoors much of the winter, so who knows...interesting...

JJA-
Many of us have antibiotic-dependent pouchitis, but do well nonetheless. Have you tried different antibiotics? There are a number of good choices.

I have to take 10,000 Vit D a day for my follicular lymphoma and it keeps it up around 65. This is the first time I heard about the gall stones, is that common with pouchitis and UC?