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Crohn's Disease Forum » Your Story » 18 yrs of Crohn + added Kidney problems - my experiences


05-08-2017, 03:03 PM   #1
OleJ
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18 yrs of Crohn + added Kidney problems - my experiences

Hi all.

I have been reading posts in here for some time now, but only today did it occur to me I ought write about my own troubles with CD, and what I try to do to live with it.

I have Crohn's disease (CD) and interstitial nephritis (IN, reduced kidney functionality). I used to take Remicade / Humira, but I had to get off of that (more on why later), and currently I take Methotrexate, 10mg/week + I do alot of other things: Supplements, meditation, yogalates, specific eating habits. Does diet play a role? Yes, I think so. Are the medications that doctors prescribe for the better or worse? Mainly for the better, but not only so. Is it worthwile to look into causality yourself? Yes, I believe so. I will return to that too.

THE BEGINNING OF CD
I grew up in rural Denmark (west coast) and was was dx'd at age 17 in 1998. The first two years were pretty bad, the CD is in my colon and I lost alot of weight, had lots of diarrhea (that word is just soo hard to spell right) - with blood in it, and often a fever. I was treated with prednisolone only, but flares kept coming.

STABLE PERIOD
Then one day my GI said
"well you are lucky, we got this new biologic drug called "remicade" on a trial that you can be a part of".
I came on board, responded extremely well, and stayed on that for five years i think.
Then I was put on Humira, which worked equally well. Basically the years up until 2011 were good - I was mostly without symptoms, I could finish a university degree, with engouh energy to have a social life also.

KIDNEY PROBLEMS #1
In 2011 I had to stay in Australia for four month for work. During that stay i experiencing night sweats, and just general malaise. When I came back blood work showed raising creatinie levels, indicating a kidney infection. My GI / neprologist suspeced an allertic reaction to Humira, and stopped treatment. Instead I got on methotrexate (MTX) and a huge dose of prednisolone to kill the kidney inflammation. It seemed to work, and the kidney function stabilized at around 50% or so.
Not wanting to go back on Humira, I tried Imuran but didn't tolerate it. When doctors couldn't really offer anything other than just MTX and prednisolone, you can say I was given a strong incentive to seek treatments myself.

DIET ATTEMPT #1
I first tried the SCD, but I noticed little improvement. I knew very little about nutrition, and lived basically on boiled chicken and carrots. I got really skinny (I am 6 feet 3, and weight about 140 lbs), and had constant diarrhea.
I had to go back on Remicade in 2012. That stabilised things, and I was pretty much OK until 2016.

KIDNEY PROBLEMS #2
In 2016 I got diarrhea and night sweats again. My kidneys were suffering once again with raising creatinine levels. Once again was I treated with a high dose of prednisolone to suppress kidney inflammation.
My doctors still told me different things, either it was part of the underlying immune condition, that used to target the colon, but had moved on the the kidney. Or, one said, it was the Remicade. They agreed that it would probably progress, and that I will eventually reach kidney failure.

#CHANGE OF LIFESTYLE
That was when I really started to think, OK I gotta do something here to try to slow down that progression. I quit my academic career and moved from the city with my wife and son to a quiet place with less stress and a more manageable job.

#PRESENT DIET ATTEMPT
Also, I started really reading into nutrition. First, I followed the GAPS diet, and did kefir, broth, sauerkraut, healthy omega-3 fatty acids, probiotic VSL#3 supplements, etc. Then I started seeing a psychologist to deal with emotional issues of the past, and I started meditation and regular exercise: swimming and cycling. I found the research-based IBD-AID diet from the University Of Massachusetts Medical School that tought me even more about choosing the natural, unprocessed, and nutritious foods over poor quality industrial food items.
Over the last year since I moved, I have noticed some improvement. Even though I take only MTX (10-15 mg/wk), I am currently without symptoms. Not quite in clinical remission though with calcprotectin levels have ranged between 50 and 1100. (<50 indicates remission). For the first time since my diagnosis I manage to have normal bowel movement, my weight has gone up 12 lbs, and I am not looking at going back to remicade or humira, which I am really happy about. Even though my kidney problems could be caused by many other things, Remicade can't be ruled out.

#MAP
As some of you know, there is new studies and trials emerging that investigate the role of the MAP (mycobacterium ssp. paratuberculosis) bacteria in CD (irishgal has written about it, and i believe helps maintain humanpara.org which is a brilliant resource.
The most recent thing I have done is really studying the research, and I am trying to find a way to send a blood sample to New Zealand for MAP testing.
In my case some observations make me think a MAP infection could be a plausible explanation for the CD and maybe my kidney problems:

- The most common cause of my kidney disease (interstitial nephritis with granulocytes) is tuberculosis, an infection related to MAP (I tested negative for TB)

- I have always had high Calcprotectin (CP) levels during a flare. CP is associated with mycobacterium infections

- 4-5 years prior to the outbreak of my CD I was heavily exposed to unpasteurized milk we got from a nearby farm for maybe two years. A causative link is highly speculative, I know, but given the high rate of MAP in danish milk, there is a good chance I was exposed during those years. The incubation time for MAP in humans is estimated to be that amount of time

So, here in 2017 I have started completely avoiding any food items that come from dairy cows (milk based products, cheeses, minced meat). I keep following the research closely. Very exiting stuff!

I get organ meat and bones for broth from a local, organic farmer, who raised his animals on grass and under stressless conditions. Last time I went to pick up I asked if he had ever had MAP of diarrhea in his cattle. He said

"No, my cows have always had solid bowel movements. The vet tests them regularily, and he also tests the meat. He has never found it. Now that you bring it up, it has always puzzled me that many of the dairy cows nowadays have diarrhea. So much so that it is consideres normal."
- some food for thought...

So, that's my experiences. I think meds like Remicade, Humira, MTX are very helpful for keeping the disease at bay, but I think it is worthwhile to use the break to consider helpful changes in nourishment and lifestyle that may in term reduce the need for those meds.

Thanks for reading (if anyone made it this far)
cheers, Ole
05-19-2017, 07:50 AM   #2
peterh888
 
Join Date: May 2017
Location: Geelong, Victoria, Australia
Hi Ole, it is so good to hear about someone else taking the time to look at what is really causing the diease itself, inflammation. I too have been down that path and after 20 or more years of suffering I have rid myself of all medications after 2 years on what I would call a ketogenic diet. High in good fats, high protein and absolutely no grains or processed foods. Keep up your research and I'm sure you'll find the key to your good health.
05-19-2017, 10:57 AM   #3
Bufford
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I do believe that diet has a lot to do with controlling Crohn's. I've cut out most grains, and processed foods and noticed a big difference. Have you tried Turmeric? I mix a teaspoon of the powdered form found in the seasoning section into a glass of water on an empty stomach halfway between breakfast and lunch and has made a huge improvement in my bowel function. Generally I feel a lot better and have a higher energy level.
05-21-2017, 12:51 PM   #4
OleJ
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peterh888: I am glad to hear you found relief. Your diet sounds similar to mine, although I have recently added certain wholegrains in limited amounts: Rye and oats. That seems to work OK so far. Did you ever get tested for MAP?
05-21-2017, 12:54 PM   #5
OleJ
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Bufford: Yes, I try to use Turmeric regularily in cooking, but I have not tried your special turmeric drink. I will give it a go.
A couple of month back I started eating jerusalem archichokes several times a week, and I think that has helped some. They are rich in pre-biotics, and feed the good bacteria in the gut.
05-23-2017, 08:10 PM   #6
stillnotregistering
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i am strict vegan for 45 years ... developed crohns in 2007 and have always thought it was a bug

i discovered by accident that my symptoms are relieved by antibiotics

last year 14 days of cipro i had lying around resulted in 4 months complete remission, never had complete remission before that

i took the cipro after i developed sepsis from the humira ...

only drugs that have ever helped are prednisone and antibiotics

three times in past four years i nearly died while they treated me for autoimmune ghosts ... twice i was >< that close to resection ...

thank you for posting your info, i am very much looking forward to the day when i can try AMAT therapy ... it's the only thing i have left, i won't use their crazy drugs anymore (6MP, remicade, humira, asa, pentasa, etc etc)
05-24-2017, 10:24 AM   #7
OleJ
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Hi stillnotreg.
Your story supports that CD is not (just) autoimmune. How come your immune system should suddenty go haywire after 45+ years of working fine?
I finally managed to get blood sampled to new zealand for testing. If I am positive I too hope I can try AMAT.
Will post the test result whenit comes in ultimo june.
06-03-2017, 06:15 AM   #8
Varazdates
 
Join Date: May 2017
Sorry to hear you've gone through so much complication with your condition leading to other conditions. I salute you for going so strong and always making the necessary adjustments to cope with the suffering and finding solutions along the way. Thats one thing I lack in right now. Not really doing much about it but I'm definitely getting motivated. Kind of have too, right. Discovered today that some IBD patients actually end up having to get a bag. That really made me think, and really freaked me out. I gotta really start taking this more seriously. I wonder why none of my docs have mentioned Remicade or humira. It seems like they work much better than Lialda or Pentasa with far less severe side effects. One of the side effects of Lialda literally says "cancer". Are you f**king kidding me?!? Lol...

Have you ever heard of this diet program? It really seems like a long term remission method:

http://www.dailymail.co.uk/health/ar...elp-drugs.html

And this is the direct follow up link to that article that the article doesn't post. They just mention the general website to go to but this is what you probably want to read after reading the dailymail article:

http://www.crohns.org.uk/crohns_dise...tional_therapy

Last edited by Varazdates; 06-03-2017 at 06:53 AM.
06-03-2017, 01:49 PM   #9
OleJ
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thanks!
Yes, I have heard about and been on both exclusion and elemental diets. The difference is that on an elemental diet all of the food is absorbed before it reaches the inflamed part of the intestine, and that kills all symptoms. I was put on it back in 1999, and it worked wonders. I couldn't /wouldn't maintain it though because it affected my social life. Over the last years I have asked different doctors if I could try it again, but they all said they do not prescribe it anymore.
The exclusion diets come in different variants: SCD diet, GAPS, IBD-AID, low FODMAP. Definately try that and see if you can find food items that do not aggrevate symptoms too much!

Keep sharing your experiences if you like.
06-04-2017, 04:20 AM   #10
Varazdates
 
Join Date: May 2017
thanks!
Yes, I have heard about and been on both exclusion and elemental diets. The difference is that on an elemental diet all of the food is absorbed before it reaches the inflamed part of the intestine, and that kills all symptoms. I was put on it back in 1999, and it worked wonders. I couldn't /wouldn't maintain it though because it affected my social life. Over the last years I have asked different doctors if I could try it again, but they all said they do not prescribe it anymore.
The exclusion diets come in different variants: SCD diet, GAPS, IBD-AID, low FODMAP. Definately try that and see if you can find food items that do not aggrevate symptoms too much!

Keep sharing your experiences if you like.
Wow nearly 20 years ago. How long did you keep up with the program before you stopped? How did it affect your social life? Did they give any explanation as to why they didnt prescribe it anymore?

I feel like if it were okay, I'd just drink those cartons of elemental forever lol. Thats probably not true, but ive never been big on eating. I like tasty stuff, primarily junk food which i cant consume anyway anymore lol, but i always have found eating to be kind of a drag. As a kid i always hoped they would come out with some sort of a simple pill you can take 3 times a day and be equivalent to a perfect diet lol.

Haven't read anything about exclusion diets, will definitely read up on it.
06-04-2017, 02:04 PM   #11
OleJ
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Wow nearly 20 years ago. How long did you keep up with the program before you stopped? How did it affect your social life? Did they give any explanation as to why they didnt prescribe it anymore?

I think I stuck with it for between one and two weeks. It is so long ago I hardly remember, but I believe I just found it to awkward sitting in the college cafeteria with the brick cartons. I had to explain myself all the time, and I had to keep track of what I consumed as the normal flow of // hunger, eating, feeling full ...> // cycle was changed completely. Today with my knowledge and maturity I think I would have managed better, but who knows. When I asked the GI about going on an elemental diet again, he responded something in the lines of "I don't know about it, we don't prescribe it, it is better to go on a stable dose of [drug] to induce remission".
06-05-2017, 05:53 AM   #12
Varazdates
 
Join Date: May 2017
I see. Yeah, you had just gotten diagnosed as it was 18 years ago. You were young and probably didn't take it as seriously, like i didnt up until a week ago. A quote from me, "Id rather die than not eat chocolate". Stupid, yes. I didnt fully mean that of course, but the attitude behind it was rebellion against not eating foods that I enjoy just because of IBD. Now i realize that the complications that arise from the disease outweigh the sacrifice. I really need to find a doc that will take me through this program. 3 months of sacrifice and you have a full list of foods to avoid and stay in constant remission without meds. That sounds amazing. Who knows, maybe the list is really short!
06-05-2017, 08:31 AM   #13
peterh888
 
Join Date: May 2017
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I see. Yeah, you had just gotten diagnosed as it was 18 years ago. You were young and probably didn't take it as seriously, like i didnt up until a week ago. A quote from me, "Id rather die than not eat chocolate". Stupid, yes. I didnt fully mean that of course, but the attitude behind it was rebellion against not eating foods that I enjoy just because of IBD. Now i realize that the complications that arise from the disease outweigh the sacrifice. I really need to find a doc that will take me through this program. 3 months of sacrifice and you have a full list of foods to avoid and stay in constant remission without meds. That sounds amazing. Who knows, maybe the list is really short!
I have found the list to be really short, it goes like this.
No grains
No sugar
High fat
Low carb
Only natural foods and definitely NOTHING that has been processed.
It took me almost 18 years to take this disease seriously enough to take the control back from the doctors who just wanted to fill me with more and more meds. Besides the fact that the doctors had ran out of meds that any effect on my diease.I sincerely hope that you guys never have to be as desperate as I was to be rid of the symptoms of crohn's and the side effects of the drugs.
06-05-2017, 10:56 AM   #14
OleJ
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I have found the list to be really short, it goes like this.
No grains
No sugar
High fat
Low carb
Only natural foods and definitely NOTHING that has been processed.
It took me almost 18 years to take this disease seriously enough to take the control back from the doctors who just wanted to fill me with more and more meds. Besides the fact that the doctors had ran out of meds that any effect on my diease.I sincerely hope that you guys never have to be as desperate as I was to be rid of the symptoms of crohn's and the side effects of the drugs.
Peterh888 - that is a complete echo of my story. Only the list has a fifth item: "nothing that comes from dairy cows"
06-05-2017, 02:18 PM   #15
Varazdates
 
Join Date: May 2017
I have found the list to be really short, it goes like this.
No grains
No sugar
High fat
Low carb
Only natural foods and definitely NOTHING that has been processed.
It took me almost 18 years to take this disease seriously enough to take the control back from the doctors who just wanted to fill me with more and more meds. Besides the fact that the doctors had ran out of meds that any effect on my diease.I sincerely hope that you guys never have to be as desperate as I was to be rid of the symptoms of crohn's and the side effects of the drugs.
Wow that doesn't sound bad at all. Did you do the elemental diet program? Are you in remission now? How long have you been in remission?

Edit: Don't mean to thread jack, OleJ. I should have just private messaged him. Sorry I'll keep it short!!!
06-27-2017, 03:24 AM   #16
OleJ
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UPDATE: I just recieved the results of MAP culture testing. It came back positive. The amount and types of cells found in my blood matches what they typically see in CD patients that are in remission and on prolonged therapy. Two times good news I think:
1) For the first time I have a probable cause of my CD.
2) Even though the infection is there, it seems to be somewhat suppressed.

My next step will be to consult a specialist who knows about MAP to get advice if I should try the atypical antibiotics treatment regimen or not...
07-29-2017, 12:00 AM   #17
stillnotregistering
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good luck ole
07-29-2017, 01:25 AM   #18
OleJ
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thanks, stillnotregistering.
I did not contact any specialists yet though. Partly for financial reasons, partly because I am doing really well at the moment, and I can wait for the Redhill study interim conclusions to come out in the beginning of August before deciding if I should consider antibiotics.

In the meantime I am researching the ways in which the body rids itself of intercellular infections, and how to stimulate those processs. They are called autophagy and apoatosis, and research indicates exercise and also certain foods help these processes.

Here's what I am currently doing* - my personal top 11:

1) I follow my GI's prescription of Methotrexate (MTX), and in agreement with him I am slowly tapering. From 15mg/week and now 12.5mg/week, I hope to reduce to 10mg/week soon. The anti-MAP properties of MTX are well established in the litterature.

2) I ride my bicycle at least two-three hours a week, exercise is suspected to be a way that you can naturally deal with interellular bacteria. A research project is currently being made on this.

3) I consume no dairy at all. Also no butter, and no milk hidden in processed foods and bars. No ground beef or other meats from dairy cows. Dairy is the primary source of MAP exposure for humans.

4) I am eating only non-processed, natural foods. Food additives have been found to aggrevate IBD.

5) I eat a semi-vegetarien diet: Apart from a little organ meat from grass fed beef cattle, chicken and fish, I mainly eat vegetables, including fermented ones, fruits, nuts, and seeds.
I make sure to include prebiotic foods such as jerusalem archichokes that feed the good bacteria, so that they can perform their duties of protecting the gut barrier. The little grain I eat is organics and whole-grain. Mainly oats and homebaked ryebread made with sourdough.

6) As a sweetener I use only unheated honey. No artificial sweeteners or refined sugars.

7) I strive to get 7,5 - 8 hours of sleep every night, to give the body a chance to restitute properly.

8) I no not smoke. Nicotinic acid has been seen to promote MAP growth.

9) I have my calprotectin (CP) levels checked regularily. CP is an indication of infection, and I speculate it may be part of the body's reaction to MAP. (I did find studies that establish a correlation between MAP infection and elevated CP).

10) I live as stress-free as possible. Stress puts the body's normal function in a stand-by mode which is very unhealthy long term.

EDIT: I forgot to add this important one:
11) I take a daily Vitamin D3 supplement, 35uG /1400 UI. The post by Crohn2357 points to a relevant interview about Vit.d and CD. Thank you for reminding me.

*Note that when I write the ways in which these activities work it is hypothetical and experimental.
None of the items are harmful though, so no harm done in trying is my philosophy.
I did find litterature supporting the different works of action in the litterature. If anyone is interested in references, let me know.

Last edited by OleJ; 07-29-2017 at 06:24 AM.
07-29-2017, 02:47 AM   #19
Crohn2357
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You may benefit from this interview.
07-29-2017, 05:22 AM   #20
OleJ
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Thanks. How could I forget. Its been added to the list
07-29-2017, 08:27 PM   #21
stillnotregistering
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Ole, thank you for reply and info. I have just today found a pathway to AMAT therapy, the abx, and am pretty excited. Ten years dealing with this, currently dealing with flare. I still have my intestines.

I would like to know how/where you got your blood tested? Before I start with the abx it would be so good to know I have MAP. And how long did it take?

More >> replies to what you wrote below, and thanks, Ole:


thanks, stillnotregistering.
I did not contact any specialists yet though. Partly for financial reasons, partly because I am doing really well at the moment, and I can wait for the Redhill study interim conclusions to come out in the beginning of August before deciding if I should consider antibiotics.

>> After ten years and having gone through all their drugs, I am all in on AMAT. The latest research is so compelling. I don't see the same level of pertinent research applied to autoimmune theory, and certainly if there have been any recent breakthroughs, I missed them.


In the meantime I am researching the ways in which the body rids itself of intercellular infections, and how to stimulate those processs. They are called autophagy and apoatosis, and research indicates exercise and also certain foods help these processes.

Here's what I am currently doing* - my personal top 11:

1) I follow my GI's prescription of Methotrexate (MTX), and in agreement with him I am slowly tapering. From 15mg/week and now 12.5mg/week, I hope to reduce to 10mg/week soon. The anti-MAP properties of MTX are well established in the litterature.

2) I ride my bicycle at least two-three hours a week, exercise is suspected to be a way that you can naturally deal with interellular bacteria. A research project is currently being made on this.

>> I think you hit on something with exercise. I don't get much, because I can't, but I make myself get out of bed every day, and I notice the more I move around, the better I feel. And when I used to jump on my rebounder, it helped a lot. I hope to get back to it soon. (Rebounder, btw, excellent for old folks like me who also get to deal with steroid induced osteo.)


3) I consume no dairy at all. Also no butter, and no milk hidden in processed foods and bars. No ground beef or other meats from dairy cows. Dairy is the primary source of MAP exposure for humans.

>> I'm the guy who was strict vegan from 20 - 57, then at age 57, 2007, went down with celiac, celiac DH, and crohns, though I don't know the order. Was misdiagnosed with UC because bleeding badly from my large. They never said anything about gluten. After a year of bleeding, internet told me to stop gluten, lol, and I did, and bleeding stopped, never returned. DH cleared up instantly too. My large is fine ever since and dx changed to crohns, severe. Fistulas, abscesses, stricture, the whole enchilada. The mystery is, how did I catch it, vegan and all? Another reason I need to test for MAP.


4) I am eating only non-processed, natural foods. Food additives have been found to aggrevate IBD.

>> organic! gmo corn is strictly forbidden ... gmo anything strictly avoided ... a really good multivitamin, methyl b12, not cyanide based, i could go on ... lots of water throughout the day ... i do 0 - 5 mg prednisone per day to deal with currrent flare, 10 mg if I have to travel ... i do 5 mg norco per day for pain ... i ingest/vape/smoke canna in very large quantitites, helps a lot to soothe the gut and help me SLEEP! sleep is critical for healing ... hope i don't get banned for mentioning canna in the wrong place, is legal here in calif ... that's all i take other than herb teas, some essential oils ... very glad to be off the 6MP, humira (sepsis!), pentasa, etc, and prednisone, for the most part.

5) I eat a semi-vegetarien diet: Apart from a little organ meat from grass fed beef cattle, chicken and fish, I mainly eat vegetables, including fermented ones, fruits, nuts, and seeds.
I make sure to include prebiotic foods such as jerusalem archichokes that feed the good bacteria, so that they can perform their duties of protecting the gut barrier. The little grain I eat is organics and whole-grain. Mainly oats and homebaked ryebread made with sourdough.

>> for decades i avoided protein and fat, just hi carb vegan, and i was fine ... but after i got sick i educated myself and realized that wasn't gonna cut it ... prednisone messes with adrenal and shuts it down, is why is hard to get off the pred, proteins and fats are gland friendly ... also, very important, i had chronic low albumin, and they won't operate on you with low ablumin, i had always just ignored the low readings ... increasing my protein solved the problem ... albumin is CRITICAL to all cell function and loads more ... it's interesting how the albumin levels are maintained in the body, kinda like osmosis ...



6) As a sweetener I use only unheated honey. No artificial sweeteners or refined sugars.

>> ditto, but also agave from time to time


7) I strive to get 7,5 - 8 hours of sleep every night, to give the body a chance to restitute properly.

>> i have insomnia pretty bad, but it has been improving lately ... it was i couldn't go 90 minutes, now i can often get four hours ... canna is huge factor here

8) I no not smoke. Nicotinic acid has been seen to promote MAP growth.


9) I have my calprotectin (CP) levels checked regularily. CP is an indication of infection, and I speculate it may be part of the body's reaction to MAP. (I did find studies that establish a correlation between MAP infection and elevated CP).

10) I live as stress-free as possible. Stress puts the body's normal function in a stand-by mode which is very unhealthy long term.

>> i'm finding that stress is critical, you don't want it to be, you figure mind over matter, i'll power through ... i had huge stress factors in my life, eliminating them definitely helped get me out of bed

EDIT: I forgot to add this important one:
11) I take a daily Vitamin D3 supplement, 35uG /1400 UI. The post by Crohn2357 points to a relevant interview about Vit.d and CD. Thank you for reminding me.

>> yes! D3 is critical, studies correlate low D3 with more crohns ... i try to get mine directly from the sun this time of year, 20 - 30 min a day, mid day ... got a really nice tan going ... in winter, i'll take 5,000 UI

*Note that when I write the ways in which these activities work it is hypothetical and experimental.
None of the items are harmful though, so no harm done in trying is my philosophy.
I did find litterature supporting the different works of action in the litterature. If anyone is interested in references, let me know.

Last edited by stillnotregistering; 07-29-2017 at 08:32 PM. Reason: add stuff
07-31-2017, 04:07 AM   #22
OleJ
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Thank you for the elaborate reply and relevant comments. Lots of good advice there!

I'm the guy who was strict vegan from 20 - 57, then at age 57, 2007, went down with celiac, celiac DH, and crohns, though I don't know the order. Was misdiagnosed with UC because bleeding badly from my large. They never said anything about gluten. After a year of bleeding, internet told me to stop gluten, lol, and I did, and bleeding stopped, never returned. DH cleared up instantly too. My large is fine ever since and dx changed to crohns, severe. Fistulas, abscesses, stricture, the whole enchilada. The mystery is, how did I catch it, vegan and all? Another reason I need to test for MAP.

That is a good question! The two most plausible answers, I guess, would be a) a mycobacterium is not involved in your case, or b) you got an infection from another source, such as drinking water or consuming vegetables fertilized with infected manure.

I Fedex'ed two blood samples to Otakaro Pathways in New Zealand. I made sure the transit time was only four days. They require less than a week, otherwise the blood starts to deteriorate.
I had the reply after a month. The lab has not yet published their growth method. It is also not FDA approved, so you have to consider the possibility that it may not be solid. I read they are in the process of publishing, I think that once they do, they will be able to achieve the official approval.
Here is a presentation by the director at this year's MAP conference
08-17-2017, 06:44 AM   #23
richard1353
 
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Hello, The crohn's disease maybe "trigger" with MAP from your post. But The doctors wrote the paper that indicate there have no MAP in 113 human patients suffering with CD in China. Where can we get and eat some specifed "medicines" for killing the MAP? Waiting your message!

Thank you for the elaborate reply and relevant comments. Lots of good advice there!

I'm the guy who was strict vegan from 20 - 57, then at age 57, 2007, went down with celiac, celiac DH, and crohns, though I don't know the order. Was misdiagnosed with UC because bleeding badly from my large. They never said anything about gluten. After a year of bleeding, internet told me to stop gluten, lol, and I did, and bleeding stopped, never returned. DH cleared up instantly too. My large is fine ever since and dx changed to crohns, severe. Fistulas, abscesses, stricture, the whole enchilada. The mystery is, how did I catch it, vegan and all? Another reason I need to test for MAP.

That is a good question! The two most plausible answers, I guess, would be a) a mycobacterium is not involved in your case, or b) you got an infection from another source, such as drinking water or consuming vegetables fertilized with infected manure.

I Fedex'ed two blood samples to Otakaro Pathways in New Zealand. I made sure the transit time was only four days. They require less than a week, otherwise the blood starts to deteriorate.
I had the reply after a month. The lab has not yet published their growth method. It is also not FDA approved, so you have to consider the possibility that it may not be solid. I read they are in the process of publishing, I think that once they do, they will be able to achieve the official approval.
Here is a presentation by the director at this year's MAP conference
08-17-2017, 06:45 AM   #24
richard1353
 
Join Date: Aug 2017

My Support Groups:
Hello, The crohn's disease maybe "trigger" with MAP from your post. But The doctors wrote the paper that indicate there have no MAP in 113 human patients suffering with CD in China. Where can we get and eat some specifed "medicines" for killing the MAP? Waiting your message!

Thank you for the elaborate reply and relevant comments. Lots of good advice there!

I'm the guy who was strict vegan from 20 - 57, then at age 57, 2007, went down with celiac, celiac DH, and crohns, though I don't know the order. Was misdiagnosed with UC because bleeding badly from my large. They never said anything about gluten. After a year of bleeding, internet told me to stop gluten, lol, and I did, and bleeding stopped, never returned. DH cleared up instantly too. My large is fine ever since and dx changed to crohns, severe. Fistulas, abscesses, stricture, the whole enchilada. The mystery is, how did I catch it, vegan and all? Another reason I need to test for MAP.

That is a good question! The two most plausible answers, I guess, would be a) a mycobacterium is not involved in your case, or b) you got an infection from another source, such as drinking water or consuming vegetables fertilized with infected manure.

I Fedex'ed two blood samples to Otakaro Pathways in New Zealand. I made sure the transit time was only four days. They require less than a week, otherwise the blood starts to deteriorate.
I had the reply after a month. The lab has not yet published their growth method. It is also not FDA approved, so you have to consider the possibility that it may not be solid. I read they are in the process of publishing, I think that once they do, they will be able to achieve the official approval.
Here is a presentation by the director at this year's MAP conference
09-18-2017, 03:13 PM   #25
OleJ
Senior Member
 
Join Date: May 2017
Location: Denmark

My Support Groups:
update:
I am doing absolutely great on my 11 point plan. Best state of health in many years, no symptoms at all, and almost drug-free. I am on 7,5 mg methotrexate (MTX) monotherapy, down from 15 mg and slowly tapering to zero.
Two years ago I was on 700mg Remicade every six weeks plus 15 mg MTX, and I was still sick. I just had a calcprotectin test made, and it was almost normal.

I will add that making the changes in lifestyle and diet cold turkey but staying on the meds, getting regular bloodwork done, and only tapering when blood work results were good has been essential I think. I speculate that rebuilding the immune system after it has been so suppressed takes time.
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