D
Deleted member 431298
Guest
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:dance
cheers, Ole
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:dance
cheers, Ole