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Vanny
May 15, 2012, 8:33:18 AM5/15/12
to
....chocolate exacerbates Crohn's. (OK, this lady's Crohn's.)
http://www.dailymail.co.uk/health/article-2144409/Chocolate-gave-ulcers-heartburn-lose-5-stone.html
Rufus
May 15, 2012, 8:52:48 PM5/15/12
to
Vanny wrote:
>
> ....chocolate exacerbates Crohn's. (OK, this lady's Crohn's.)
>
> http://www.dailymail.co.uk/health/article-2144409/Chocolate-gave-ulcers-heartburn-lose-5-stone.html
>
>
I'm very curious to know if anyone else that has CD can tolerate
>
> ....chocolate exacerbates Crohn's. (OK, this lady's Crohn's.)
>
> http://www.dailymail.co.uk/health/article-2144409/Chocolate-gave-ulcers-heartburn-lose-5-stone.html
>
>
chocolate if it has nuts in it. That's the only way I can eat chocolate
now - it has to have nuts in it, then I'm ok. Otherwise, with plain
chocolate - SPIKE!
...and honey in my tea will flat destroy me now.
--
- Rufus
zumone2002
May 15, 2012, 10:50:35 PM5/15/12
to
Hello Rufus,
> I'm very curious to know if anyone else that has CD can tolerate
> chocolate if it has nuts in it. That's the only way I can eat chocolate
> now - it has to have nuts in it, then I'm ok. Otherwise, with plain
> chocolate – SPIKE!
CD – check (active moderate to severe)
Tolerate chocolate – check (prefer dark chocolate but can eat other
types)
Tolerate nuts – check
Tolerate raw fruit – check
Tolerate raw produce – check
At least to date with the disclaimer that if I go on a reduced diet I
had to gradually increase things or I *might* run into problems.
I found the above out following a colonoscopy where I followed the
doctor's instructions and returned to my normal diet after the
procedure. At that time my normal diet included a pound or more of
raw veggies for breakfast.
> ...and honey in my tea will flat destroy me now.
No problems here, I use honey to help control a chronic non-
productive cough (doctors think it is inflammation related).
--
Luke
> I'm very curious to know if anyone else that has CD can tolerate
> chocolate if it has nuts in it. That's the only way I can eat chocolate
> now - it has to have nuts in it, then I'm ok. Otherwise, with plain
CD – check (active moderate to severe)
Tolerate chocolate – check (prefer dark chocolate but can eat other
types)
Tolerate nuts – check
Tolerate raw fruit – check
Tolerate raw produce – check
At least to date with the disclaimer that if I go on a reduced diet I
had to gradually increase things or I *might* run into problems.
I found the above out following a colonoscopy where I followed the
doctor's instructions and returned to my normal diet after the
procedure. At that time my normal diet included a pound or more of
raw veggies for breakfast.
> ...and honey in my tea will flat destroy me now.
productive cough (doctors think it is inflammation related).
--
Luke
Vanny
May 16, 2012, 2:01:05 AM5/16/12
to
Have you had your lungs checked for fibrosis? That can occur on chronic
Crohn's inflammation.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1433358/
It can also occur because of uncontrolled silent reflux. Not all reflux
causes heartburn.
My symptoms are mainly sore throats, occasional night coughing,
hoarseness and eventually loss of voice if I am not careful - LPR
(laryngopharyngeal reflux). Rarely do I have heartburn - perhaps once a
year if that.
If you have not had a recent lung X-Ray, it might be the time to have it
done, in addition to oesophageal gastroduodenoscopy if you have not had
the procedure done recently. Especially as I believe that you smoke...
It's great that you can tolerate so many food items. In my experience it
is more the exception than the rule that patients with moderate to
severe Crohn's tolerate raw foods. I don't tolerate raw produce because
of stricturing/stenosing. However, I do occasionally eat nuts even
though they do exacerbate my steatorrhoea, I just have to be careful
that I chew them really well.
Rufus
May 16, 2012, 8:41:50 PM5/16/12
to
I drink black coffee with sugar and that doesn't bother me, but putting
honey in my tea will flat do me in. Same for chocolate - I can eat
nuts, popcorn, etc. by itself, but if I'm having chocolate it *has* to
have nuts of some kind in it or I get spiked. I prefer almonds, but
peanuts work too.
I'm ok with raw veggies, but when it comes to fruit I have to watch acid
content - no citrus, period. I eat a lot of melon and bananas. Some
things I can eat if they are cooked - like pineapple - or in limited
quantity; like maybe a quarter orange. But I have to say "no" to things
like blueberries and/or strawberries if they are raw. In fact, the
*worst* thing I can do to myself outside of putting honey in my tea is
to eat a chocolate dipped strawberry...
...which has turned Valentine's day in to nothing but an excuse for an
argument, and ended many a relationship for me. (Probably for the better.)
--
- Rufus
zumone2002
May 16, 2012, 9:29:45 PM5/16/12
to
Hello Rufus,
> I seem to be ok with raw sugars only in combination with other things -
> I drink black coffee with sugar and that doesn't bother me, but putting
> honey in my tea will flat do me in. Same for chocolate - I can eat
> nuts, popcorn, etc. by itself, but if I'm having chocolate it *has* to
> have nuts of some kind in it or I get spiked. I prefer almonds, but
> peanuts work too.
I'm going with the many causes, one disease leading to the wide
variation in what people can tolerate.
> I'm ok with raw veggies, but when it comes to fruit I have to watch acid
> content - no citrus, period. I eat a lot of melon and bananas. Some
> things I can eat if they are cooked - like pineapple - or in limited
> quantity; like maybe a quarter orange. But I have to say "no" to things
> like blueberries and/or strawberries if they are raw. In fact, the
> *worst* thing I can do to myself outside of putting honey in my tea is
> to eat a chocolate dipped strawberry...
I just saw a cold summertime soup recipe that'd do you in,
blueberries cooked with honey and spices. I just couldn't see putting
that many yummy blueberries into a soup.
> ...which has turned Valentine's day in to nothing but an excuse for an
> argument, and ended many a relationship for me. (Probably for the better.)
I say so, if someone insists your preferences / tastes (whether
medically necessary or not) are bad, you'll have problems down the
line.
Take care,
--
Luke
> I seem to be ok with raw sugars only in combination with other things -
> I drink black coffee with sugar and that doesn't bother me, but putting
> honey in my tea will flat do me in. Same for chocolate - I can eat
> nuts, popcorn, etc. by itself, but if I'm having chocolate it *has* to
> have nuts of some kind in it or I get spiked. I prefer almonds, but
> peanuts work too.
variation in what people can tolerate.
> I'm ok with raw veggies, but when it comes to fruit I have to watch acid
> content - no citrus, period. I eat a lot of melon and bananas. Some
> things I can eat if they are cooked - like pineapple - or in limited
> quantity; like maybe a quarter orange. But I have to say "no" to things
> like blueberries and/or strawberries if they are raw. In fact, the
> *worst* thing I can do to myself outside of putting honey in my tea is
> to eat a chocolate dipped strawberry...
blueberries cooked with honey and spices. I just couldn't see putting
that many yummy blueberries into a soup.
> ...which has turned Valentine's day in to nothing but an excuse for an
> argument, and ended many a relationship for me. (Probably for the better.)
medically necessary or not) are bad, you'll have problems down the
line.
Take care,
--
Luke
zumone2002
May 16, 2012, 9:23:20 PM5/16/12
to
Hello Vanny,
> Have you had your lungs checked for fibrosis? That can occur on chronic
> Crohn's inflammation.
> http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1433358/
No but I had other work up done and nothing was found.
> It can also occur because of uncontrolled silent reflux. Not all reflux
> causes heartburn.
Doctor's best guesses is 1) inflammation and 2) post nasal drip.
> My symptoms are mainly sore throats, occasional night coughing,
> hoarseness and eventually loss of voice if I am not careful - LPR
> (laryngopharyngeal reflux). Rarely do I have heartburn - perhaps once a
> year if that.
> If you have not had a recent lung X-Ray, it might be the time to have it
> done, in addition to oesophageal gastroduodenoscopy if you have not had
> the procedure done recently. Especially as I believe that you smoke...
Maybe 5 years back and I quit smoking in 1998.
> It's great that you can tolerate so many food items. In my experience it
> is more the exception than the rule that patients with moderate to
> severe Crohn's tolerate raw foods. I don't tolerate raw produce because
> of stricturing/stenosing. However, I do occasionally eat nuts even
> though they do exacerbate my steatorrhoea, I just have to be careful
> that I chew them really well.
It balances out, the only treatment to help me is high doses of
prednisone. Even Entocort (budesinide) doesn't help as well and gives
me more and worse side effects. So pred gets saved for when things
are bad, otherwise I have to tolerate all my symptoms. And the last
time I went on it I started to go blind in both eyes. :-( I got off
of it in time then, next time?
Plus I lost most of a decade to treatments which 1) did not help and
2) made me sicker and less functional. Humira helps a lot of people
but for me, nothing but gradually getting sicker and sicker. When I
finally stopped it, it left my immune system in a hypersensitive state
leading to a lot of inflammation related health problems (inflammatory
arthritis, inflamed tendons, inflamed rotator cuff, inflamed muscles,
inflamed tendons leading to severe carpal tunnel and pericarditis).
Everything has cleared up but the arthritis so now I add dozens of
joints with pain to all my skeletal muscle pains.
--
Luke
> Have you had your lungs checked for fibrosis? That can occur on chronic
> Crohn's inflammation.
> http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1433358/
> It can also occur because of uncontrolled silent reflux. Not all reflux
> causes heartburn.
> My symptoms are mainly sore throats, occasional night coughing,
> hoarseness and eventually loss of voice if I am not careful - LPR
> (laryngopharyngeal reflux). Rarely do I have heartburn - perhaps once a
> year if that.
> If you have not had a recent lung X-Ray, it might be the time to have it
> done, in addition to oesophageal gastroduodenoscopy if you have not had
> the procedure done recently. Especially as I believe that you smoke...
> It's great that you can tolerate so many food items. In my experience it
> is more the exception than the rule that patients with moderate to
> severe Crohn's tolerate raw foods. I don't tolerate raw produce because
> of stricturing/stenosing. However, I do occasionally eat nuts even
> though they do exacerbate my steatorrhoea, I just have to be careful
> that I chew them really well.
prednisone. Even Entocort (budesinide) doesn't help as well and gives
me more and worse side effects. So pred gets saved for when things
are bad, otherwise I have to tolerate all my symptoms. And the last
time I went on it I started to go blind in both eyes. :-( I got off
of it in time then, next time?
Plus I lost most of a decade to treatments which 1) did not help and
2) made me sicker and less functional. Humira helps a lot of people
but for me, nothing but gradually getting sicker and sicker. When I
finally stopped it, it left my immune system in a hypersensitive state
leading to a lot of inflammation related health problems (inflammatory
arthritis, inflamed tendons, inflamed rotator cuff, inflamed muscles,
inflamed tendons leading to severe carpal tunnel and pericarditis).
Everything has cleared up but the arthritis so now I add dozens of
joints with pain to all my skeletal muscle pains.
--
Luke
Rufus
May 16, 2012, 10:38:35 PM5/16/12
to
zumone2002 wrote:
> Hello Rufus,
>
>> I seem to be ok with raw sugars only in combination with other things -
>> I drink black coffee with sugar and that doesn't bother me, but putting
>> honey in my tea will flat do me in. Same for chocolate - I can eat
>> nuts, popcorn, etc. by itself, but if I'm having chocolate it *has* to
>> have nuts of some kind in it or I get spiked. I prefer almonds, but
>> peanuts work too.
>
> I'm going with the many causes, one disease leading to the wide
> variation in what people can tolerate.
>
That's why I asked in the first place - the variation. I know a number
> Hello Rufus,
>
>> I seem to be ok with raw sugars only in combination with other things -
>> I drink black coffee with sugar and that doesn't bother me, but putting
>> honey in my tea will flat do me in. Same for chocolate - I can eat
>> nuts, popcorn, etc. by itself, but if I'm having chocolate it *has* to
>> have nuts of some kind in it or I get spiked. I prefer almonds, but
>> peanuts work too.
>
> I'm going with the many causes, one disease leading to the wide
> variation in what people can tolerate.
>
of people locally with CD and we all can and can't tolerate something
different. I think of everyone I know I have the worst collection of
extra-intestinal issues, though.
>> I'm ok with raw veggies, but when it comes to fruit I have to watch acid
>> content - no citrus, period. I eat a lot of melon and bananas. Some
>> things I can eat if they are cooked - like pineapple - or in limited
>> quantity; like maybe a quarter orange. But I have to say "no" to things
>> like blueberries and/or strawberries if they are raw. In fact, the
>> *worst* thing I can do to myself outside of putting honey in my tea is
>> to eat a chocolate dipped strawberry...
>
> I just saw a cold summertime soup recipe that'd do you in,
> blueberries cooked with honey and spices. I just couldn't see putting
> that many yummy blueberries into a soup.
>
it...was very good. It sounds like if you took that soup and made it to
use cobbler...
>> ...which has turned Valentine's day in to nothing but an excuse for an
>> argument, and ended many a relationship for me. (Probably for the better.)
>
> I say so, if someone insists your preferences / tastes (whether
> medically necessary or not) are bad, you'll have problems down the
> line.
>
> Take care,
>
> --
> Luke
--
- Rufus
Jeff
May 18, 2012, 7:03:01 PM5/18/12
to
Prednisone practically ruined my life, or at the very least has made it
infinitely more painful. I had to have 1 hip replaced due to avascular
or osteonecrosis. The other hip has suffered some effects but is hanging
on. Luckily I can walk enough to do my daily activities and even go for
short hikes on the weekends. I always loved hiking and walking, but now
there is always some pain associated with it. I can only go about a mile
or so before my hip starts to lock up on me, I also have bad arthritis,
which I attribute to the pred as well, in my knees and found out last
fall that I have osteoporosis in my lower lumbar and pelvic bones (also
due to the pred).
It's an evil drug and I was only on it for about 6 months.
Now I am taking asacol and 6MP which help but the real key is diet and
avoidance of those foods that cause issues. I've listed them before so
will refrain for another conversation, but chocolate (unfortunately) is
on that list.
I'm a firm believer that diet and lifestyle are the 2 most important
things you can do to help regress your symptoms, even more than drugs,
although drugs do play a very important part for many including myself.
regards,
infinitely more painful. I had to have 1 hip replaced due to avascular
or osteonecrosis. The other hip has suffered some effects but is hanging
on. Luckily I can walk enough to do my daily activities and even go for
short hikes on the weekends. I always loved hiking and walking, but now
there is always some pain associated with it. I can only go about a mile
or so before my hip starts to lock up on me, I also have bad arthritis,
which I attribute to the pred as well, in my knees and found out last
fall that I have osteoporosis in my lower lumbar and pelvic bones (also
due to the pred).
It's an evil drug and I was only on it for about 6 months.
Now I am taking asacol and 6MP which help but the real key is diet and
avoidance of those foods that cause issues. I've listed them before so
will refrain for another conversation, but chocolate (unfortunately) is
on that list.
I'm a firm believer that diet and lifestyle are the 2 most important
things you can do to help regress your symptoms, even more than drugs,
although drugs do play a very important part for many including myself.
regards,
Jeff
May 18, 2012, 7:21:15 PM5/18/12
to
I forgot to tell my blueberry experience. I have UC, class of
'99.
First I wanted to say that I believe it's not always just a singular
food item, but often it's the amount and the combination with other
foods or beverages that can make something more or less tolerable. I put
blueberries on my cereal but with banana and sometimes strawberry but I
have to keep the ratio of fruit to cereal to about 10% - 15% fruit, the
rest cereal. I will add more cereal if there is too much fruit as I will
feel my stomach start to churn. I think the anti-oxidants are good for
me so I do this every other day. I did not eat a lot of fruits during
the time I was contracting the disease and I think that was a
contributing factor.
But every summer I go to a nice lake to visit a friend and she always
cooks me a blueberry pie for my birthday, as she knows I prefer that to
cake. I love blueberry pie. I do eat it with a healthy amount of ice
cream and I feel that helps in some way. I have to say I have the best
poops during that week and because they have a purplish hue I feel the
blueberry pie is not only well tolerated but actually very beneficial. I
do get more sleep while I'm there which can also help but I tend to
drink more wine which usually has a negative effect. Also being on
vacation no doubt helps with the release of stress. I just can't help
having this "gut" feeling that blueberry pie works some kind of magic in
my system. I do think that the baking reduces the acidic content, it
would be good if some scientist could verify that. Cooking certainly
does change foods in profound ways and good cooks know how to take
advantage of that. But too little is known about how foods and cooking
methods affect IBD - imho. I feel science has overlooked this important
factor.
regards,
Jff
'99.
First I wanted to say that I believe it's not always just a singular
food item, but often it's the amount and the combination with other
foods or beverages that can make something more or less tolerable. I put
blueberries on my cereal but with banana and sometimes strawberry but I
have to keep the ratio of fruit to cereal to about 10% - 15% fruit, the
rest cereal. I will add more cereal if there is too much fruit as I will
feel my stomach start to churn. I think the anti-oxidants are good for
me so I do this every other day. I did not eat a lot of fruits during
the time I was contracting the disease and I think that was a
contributing factor.
But every summer I go to a nice lake to visit a friend and she always
cooks me a blueberry pie for my birthday, as she knows I prefer that to
cake. I love blueberry pie. I do eat it with a healthy amount of ice
cream and I feel that helps in some way. I have to say I have the best
poops during that week and because they have a purplish hue I feel the
blueberry pie is not only well tolerated but actually very beneficial. I
do get more sleep while I'm there which can also help but I tend to
drink more wine which usually has a negative effect. Also being on
vacation no doubt helps with the release of stress. I just can't help
having this "gut" feeling that blueberry pie works some kind of magic in
my system. I do think that the baking reduces the acidic content, it
would be good if some scientist could verify that. Cooking certainly
does change foods in profound ways and good cooks know how to take
advantage of that. But too little is known about how foods and cooking
methods affect IBD - imho. I feel science has overlooked this important
factor.
regards,
Jff
Jeff
May 18, 2012, 7:32:05 PM5/18/12
to
I heard it said many times that it takes more energy to digest cold
foods. Ayurvedic and TCM both agree on this as to nutritionist I have
encountered.
Many in the medical profession may poo-poo this but I've had enough
experience to know that it is very real and can be effective. The
definition of energy can cover a very broad spectrum. Even a rock or
lump of coal has energy.
regards
Jff
On 5/16/2012 10:38 PM, Rufus wrote:
>
> Agreed.
>
foods. Ayurvedic and TCM both agree on this as to nutritionist I have
encountered.
Many in the medical profession may poo-poo this but I've had enough
experience to know that it is very real and can be effective. The
definition of energy can cover a very broad spectrum. Even a rock or
lump of coal has energy.
regards
Jff
On 5/16/2012 10:38 PM, Rufus wrote:
> zumone2002 wrote:
>>
>> I just saw a cold summertime soup recipe that'd do you in,
>> blueberries cooked with honey and spices. I just couldn't see putting
>> that many yummy blueberries into a soup.
>>
>
>> Luke
>>
>> I just saw a cold summertime soup recipe that'd do you in,
>> blueberries cooked with honey and spices. I just couldn't see putting
>> that many yummy blueberries into a soup.
>>
>
>
> Agreed.
>
Jeff
May 18, 2012, 7:37:01 PM5/18/12
to
This should not be news at all. Many people have identified chocolate as
an antagonist to their symptoms for many years. It is good to see
someone reiterate that and also glad she got the proper help to address
the issue. I suspect that in her case it's not just the chocolate but
the excessive amounts that were consumed. I liken IBD to an open or raw
wound but inside you. Once you get it it's really really hard to clear
up because raw sewage is continually passing over it. That's one of my
analogies, certainly not an indepth explanation but I think it has some
validity and get the point across.
regards
Jff
an antagonist to their symptoms for many years. It is good to see
someone reiterate that and also glad she got the proper help to address
the issue. I suspect that in her case it's not just the chocolate but
the excessive amounts that were consumed. I liken IBD to an open or raw
wound but inside you. Once you get it it's really really hard to clear
up because raw sewage is continually passing over it. That's one of my
analogies, certainly not an indepth explanation but I think it has some
validity and get the point across.
regards
Jff
zumone2002
May 19, 2012, 1:48:26 PM5/19/12
to
Hi Jeff,
> It's an evil drug and I was only on it for about 6 months.
No it is not. It is powerful and dangerous but not evil.
> Now I am taking asacol and 6MP which help but the real key is diet and
> avoidance of those foods that cause issues. I've listed them before so
> will refrain for another conversation, but chocolate (unfortunately) is
> on that list.
Both those meds made me sicker. Like I said elsewhere, lots of
individual variation. Remember recommending Chlorella elsewhere? I
tried it and got no improvement and severe fatigue from it.
> I'm a firm believer that diet and lifestyle are the 2 most important
> things you can do to help regress your symptoms, even more than drugs,
> although drugs do play a very important part for many including myself.
I'm not. I've gone on very restricted diets several times and not
seen any improvement in my symptoms. And I was on them for months not
weeks. I've done exercise programs when I was well enough and while I
saw an increase in strength and endurance, I did not see any change in
my symptoms.
--
Luke
> It's an evil drug and I was only on it for about 6 months.
> Now I am taking asacol and 6MP which help but the real key is diet and
> avoidance of those foods that cause issues. I've listed them before so
> will refrain for another conversation, but chocolate (unfortunately) is
> on that list.
individual variation. Remember recommending Chlorella elsewhere? I
tried it and got no improvement and severe fatigue from it.
> I'm a firm believer that diet and lifestyle are the 2 most important
> things you can do to help regress your symptoms, even more than drugs,
> although drugs do play a very important part for many including myself.
seen any improvement in my symptoms. And I was on them for months not
weeks. I've done exercise programs when I was well enough and while I
saw an increase in strength and endurance, I did not see any change in
my symptoms.
--
Luke
Rufus
May 19, 2012, 2:27:58 PM5/19/12
to
zumone2002 wrote:
> Hi Jeff,
>
>> It's an evil drug and I was only on it for about 6 months.
>
> No it is not. It is powerful and dangerous but not evil.
>
>> Now I am taking asacol and 6MP which help but the real key is diet and
>> avoidance of those foods that cause issues. I've listed them before so
>> will refrain for another conversation, but chocolate (unfortunately) is
>> on that list.
>
> Both those meds made me sicker. Like I said elsewhere, lots of
> individual variation. Remember recommending Chlorella elsewhere? I
> tried it and got no improvement and severe fatigue from it.
>
Asacol gave me *severe* insomnia...by the time I got off it I was near
> Hi Jeff,
>
>> It's an evil drug and I was only on it for about 6 months.
>
> No it is not. It is powerful and dangerous but not evil.
>
>> Now I am taking asacol and 6MP which help but the real key is diet and
>> avoidance of those foods that cause issues. I've listed them before so
>> will refrain for another conversation, but chocolate (unfortunately) is
>> on that list.
>
> Both those meds made me sicker. Like I said elsewhere, lots of
> individual variation. Remember recommending Chlorella elsewhere? I
> tried it and got no improvement and severe fatigue from it.
>
the point of waking, walking hallucination I was so sleep deprived. I
switched to Colazal, which is the same type of drug/compound but with a
differing mechanism of action and the side effect(s) is far less severe
for me. I still carry a lot of fatigue though. I had raging
hallucinations while I was on pred, too...I'm glad that's over.
I do Protonix, Colozal, and Humira now and that combination has kept me
stable for the last 5-6 years; I've been on Humira for about two years
(I think) because of extra-intestinal issues, mainly - connective tissue
and tendon flaring.
>> I'm a firm believer that diet and lifestyle are the 2 most important
>> things you can do to help regress your symptoms, even more than drugs,
>> although drugs do play a very important part for many including myself.
>
> I'm not. I've gone on very restricted diets several times and not
> seen any improvement in my symptoms. And I was on them for months not
> weeks. I've done exercise programs when I was well enough and while I
> saw an increase in strength and endurance, I did not see any change in
> my symptoms.
>
> --
> Luke
dietary discipline when it comes to acidic foods - no tomatoes, citrus,
high sugars, etc. That does seem to work for me. It's been sort of a
process of elimination (glutins increase my fatigue, for example, so I
avoid wheat bread, barley, etc.) but it's a "self inflicted" dietary
regimen. I do eat a lot of carbs - rice, potatoes, and hearth baked
breads mainly.
I also started a physical therapy round last week and have had some
dramatic improvements in my pain levels which as it turns out are
allowing me to get better quality sleep...that's been *huge*, as I've
been a walking insomniac for the past 5-6 years now, getting only about
2-4 hours light sleep per night when I get any sleep at all - generally
out of any given week I'd have a period where I'd just remain awake for
72 hours. Just in this past week I've had more waking energy than I've
had for some years.
The thing that's seemed to make the biggest impact on my back pain is
electro-stim and ice. The effects aren't immediate though - after about
10-20 minutes later, after standing or walking I get very nice relief.
My routine in addition to the stim is just 30 second stretching - so far
that seems to have reduced (but not eliminated) the pain in my calves
and thighs. Moving and stretching - but not heavy exercise - seems to
make me feel better. "Real exercise" makes me feel terrible...totally
wiped out.
--
- Rufus
Jeff
May 20, 2012, 4:45:28 PM5/20/12
to
Hey Luke
I am sorry to hear you've had such difficulties in finding effective
treatments. Personally I'm not as attached to the type of treatment,
whether it's lifestyle or diet or meds, if it works or if it helps, then
I'm all for it. If they made a pill that would cure or significantly
reduce the symptoms with minimal side-effects I'll be the 1st in line to
get it.
Correct me if I'm wrong (I know you will :-)) but it seems you do and
have made some dietary adjustments that help, or you have identified
foods that you avoid, either of these would help reduce overall level of
symptoms. This is really all I mean by diet and/or lifestyle changes
that just about everyone makes on some level. And it's not limited to
just elimination techniques, which some find effective to identify
problem foods, but the addition of some things that can be digestive
enhancements, for lack of a better term at the moment. I take a high
potency probiotic as well as digestive enzymes along with a number of
vitamins and minerals which I believe help overall digestion. I've made
these choices from a reasonable amount of research on the matter and
lots of trial and error.
An elimination diet is one technique but it may also eliminate essential
ingredients to having a healthy digestive eco-system. People with IBD,
imho, already have their eco-system out of whack, so elimination diets
may not be the best choice to re-balance things because the missing
ingredients are still - missing. That's a simplified version for sake of
this discussion but I hope the point is clear.
Also I've noted from an informal observation of people's postings that
it seems people with CD seem to have more problems then UC. It's not
surprising when you consider the digestive process is just that - a
process. If the process gets interrupted or thrown off sooner during
it's course then you can expect things to only get worse as it goes down
stream.
Fatigue is perfectly understandable since we are not getting the
nutrients our bodies need for all it's functions and also it is
expending more energy fighting this continual battle that is going on.
All that takes energy away from the already burdened system.
Getting the right combination to re-right the ailing ship is no small or
easy task. I've been trying for over 10 years. I feel that I am on the
right track though, and have made significant improvements so that I am
mostly free from the constant worry about "how far away is the nearest
clean bathroom facilities". If not for the damning effects from the
prednisone my life would not be so bad. I realize this illness takes on
many forms and each person has their own individual manifestations,
however I also think there are many who share similarities, and of
course we all want to share what works and what doesn't in hopes we may
help someone else just as we have been helped by others.
I do think rather strongly that a healthy diet is ever so important to
regaining health and well being. Drugs cannot do that,
I know you have worked tirelessly to share so much, I do hope you can
find the key or keys get things moving in the right direction.
I've rambled enough for now.
regards,
Jeff
I am sorry to hear you've had such difficulties in finding effective
treatments. Personally I'm not as attached to the type of treatment,
whether it's lifestyle or diet or meds, if it works or if it helps, then
I'm all for it. If they made a pill that would cure or significantly
reduce the symptoms with minimal side-effects I'll be the 1st in line to
get it.
Correct me if I'm wrong (I know you will :-)) but it seems you do and
have made some dietary adjustments that help, or you have identified
foods that you avoid, either of these would help reduce overall level of
symptoms. This is really all I mean by diet and/or lifestyle changes
that just about everyone makes on some level. And it's not limited to
just elimination techniques, which some find effective to identify
problem foods, but the addition of some things that can be digestive
enhancements, for lack of a better term at the moment. I take a high
potency probiotic as well as digestive enzymes along with a number of
vitamins and minerals which I believe help overall digestion. I've made
these choices from a reasonable amount of research on the matter and
lots of trial and error.
An elimination diet is one technique but it may also eliminate essential
ingredients to having a healthy digestive eco-system. People with IBD,
imho, already have their eco-system out of whack, so elimination diets
may not be the best choice to re-balance things because the missing
ingredients are still - missing. That's a simplified version for sake of
this discussion but I hope the point is clear.
Also I've noted from an informal observation of people's postings that
it seems people with CD seem to have more problems then UC. It's not
surprising when you consider the digestive process is just that - a
process. If the process gets interrupted or thrown off sooner during
it's course then you can expect things to only get worse as it goes down
stream.
Fatigue is perfectly understandable since we are not getting the
nutrients our bodies need for all it's functions and also it is
expending more energy fighting this continual battle that is going on.
All that takes energy away from the already burdened system.
Getting the right combination to re-right the ailing ship is no small or
easy task. I've been trying for over 10 years. I feel that I am on the
right track though, and have made significant improvements so that I am
mostly free from the constant worry about "how far away is the nearest
clean bathroom facilities". If not for the damning effects from the
prednisone my life would not be so bad. I realize this illness takes on
many forms and each person has their own individual manifestations,
however I also think there are many who share similarities, and of
course we all want to share what works and what doesn't in hopes we may
help someone else just as we have been helped by others.
I do think rather strongly that a healthy diet is ever so important to
regaining health and well being. Drugs cannot do that,
I know you have worked tirelessly to share so much, I do hope you can
find the key or keys get things moving in the right direction.
I've rambled enough for now.
regards,
Jeff
zumone2002
May 23, 2012, 12:51:36 AM5/23/12
to
Hello Jeff,
> I am sorry to hear you've had such difficulties in finding effective
> treatments. Personally I'm not as attached to the type of treatment,
> whether it's lifestyle or diet or meds, if it works or if it helps, then
> I'm all for it. If they made a pill that would cure or significantly
> reduce the symptoms with minimal side-effects I'll be the 1st in line to
> get it.
Me too! But I look for some evidence to support the treatment and
then review the risks, little evidence / high risk gets ignored. Its
why I tried the Chlorella you recommended a while back, only a little
evidence but, assuming the supplement maker was honest, very low risk.
> Correct me if I'm wrong (I know you will :-)) but it seems you do and
> have made some dietary adjustments that help, or you have identified
> foods that you avoid, either of these would help reduce overall level of
> symptoms.
Not really. I've tried a lot of things to identify problem foods and
with one exception, the results come back either nothings bothers me
or everything does.
I lean to the everything bothers me as my fatigue gets worse about
60-90 minutes after eating. So the lifestyle change I made is to fast
until my symptoms get worse anyway and then eat.
The on exception is bacon. If I eat a pound like I used to do when I
was younger, it makes my diarrhea worse. 5 or 6 pieces seems to be
okay.
> This is really all I mean by diet and/or lifestyle changes
> that just about everyone makes on some level.
The problem with your definition is that it covers everything. Any
change in diet, any change in lifestyle. Given this definition,
everyone makes some change, if nothing else to avoid foods which cause
pain. If I stop hitting myself with a hammer, my pain improves and
I've made a lifestyle change treatment.
My definition is stricter, for instance bone loading exercises to
reduce osteoporosis is a life style change that improves my health.
> And it's not limited to
> just elimination techniques, which some find effective to identify
> problem foods, but the addition of some things that can be digestive
> enhancements, for lack of a better term at the moment. I take a high
> potency probiotic as well as digestive enzymes along with a number of
> vitamins and minerals which I believe help overall digestion. I've made
> these choices from a reasonable amount of research on the matter and
> lots of trial and error.
>
> An elimination diet is one technique but it may also eliminate essential
> ingredients to having a healthy digestive eco-system. People with IBD,
> imho, already have their eco-system out of whack, so elimination diets
> may not be the best choice to re-balance things because the missing
> ingredients are still - missing. That's a simplified version for sake of
> this discussion but I hope the point is clear.
Elimination diets were only one form of restricted diets I've tried.
Low residue diets ( a must for me following a colonoscopy), liquid
diets, elemental diet, almost vegan (2-3 ounces of wild caught salmon
weekly was the exception) and more.
I had to give up the almost vegan diet and I could not eat enough to
keep my weight up. Well, not without eating sugar or something
similar.
And I try to track my nutrition on any new diet. There's an open
source program called CRON-o-meter (http://cronometer.com) which is
excellent for checking nutrition. It was originally intended for
people trying a calorie restricted diet.
> Fatigue is perfectly understandable since we are not getting the
> nutrients our bodies need for all it's functions and also it is
> expending more energy fighting this continual battle that is going on.
> All that takes energy away from the already burdened system.
Systemic inflammation can cause fatigue as well. I've had fatigue
since well before any recognized nutritional problems, I'm going with
the inflammation as the probably cause.
> Getting the right combination to re-right the ailing ship is no small or
> easy task.
No it is an impossible task. There is no way currently to track all
the nutrients a person needs. There isn't any easy way to determine
what nutrients a person is having trouble getting, if you can't test
for it you have to use other ways to determine its level. And the
nutrients are often needed in combination. Look up combinatorial
complexity. And then there's the form and quantities available to us
in some unknown quality.
Take vitamin E for example, there are several forms available and one
person may respond better with one form and not at all with another.
I think that was part of the trouble with early vitamin E studies,
they didn't distinguish which form was used.
> I've been trying for over 10 years. I feel that I am on the
> right track though, and have made significant improvements so that I am
> mostly free from the constant worry about "how far away is the nearest
> clean bathroom facilities". If not for the damning effects from the
> prednisone my life would not be so bad. I realize this illness takes on
> many forms and each person has their own individual manifestations,
> however I also think there are many who share similarities, and of
> course we all want to share what works and what doesn't in hopes we may
> help someone else just as we have been helped by others.
>
> I do think rather strongly that a healthy diet is ever so important to
> regaining health and well being. Drugs cannot do that,
I agree. The problem is figuring out what actually is a healthy
diet. There are a lot of opinions out there but even the best science
can't say much. If you have the time check out “The Gospel of Food:
Everything You Think You Know About Food Is Wrong”, it discussed the
limitations of most studies on diet.
> I know you have worked tirelessly to share so much, I do hope you can
> find the key or keys get things moving in the right direction.
>
> I've rambled enough for now.
No, it was a nice discussion. We may not agree about everything but
that doesn’t mean we can't talk about it.
Take care,
--
Luke
> I am sorry to hear you've had such difficulties in finding effective
> treatments. Personally I'm not as attached to the type of treatment,
> whether it's lifestyle or diet or meds, if it works or if it helps, then
> I'm all for it. If they made a pill that would cure or significantly
> reduce the symptoms with minimal side-effects I'll be the 1st in line to
> get it.
then review the risks, little evidence / high risk gets ignored. Its
why I tried the Chlorella you recommended a while back, only a little
evidence but, assuming the supplement maker was honest, very low risk.
> Correct me if I'm wrong (I know you will :-)) but it seems you do and
> have made some dietary adjustments that help, or you have identified
> foods that you avoid, either of these would help reduce overall level of
> symptoms.
with one exception, the results come back either nothings bothers me
or everything does.
I lean to the everything bothers me as my fatigue gets worse about
60-90 minutes after eating. So the lifestyle change I made is to fast
until my symptoms get worse anyway and then eat.
The on exception is bacon. If I eat a pound like I used to do when I
was younger, it makes my diarrhea worse. 5 or 6 pieces seems to be
okay.
> This is really all I mean by diet and/or lifestyle changes
> that just about everyone makes on some level.
change in diet, any change in lifestyle. Given this definition,
everyone makes some change, if nothing else to avoid foods which cause
pain. If I stop hitting myself with a hammer, my pain improves and
I've made a lifestyle change treatment.
My definition is stricter, for instance bone loading exercises to
reduce osteoporosis is a life style change that improves my health.
> And it's not limited to
> just elimination techniques, which some find effective to identify
> problem foods, but the addition of some things that can be digestive
> enhancements, for lack of a better term at the moment. I take a high
> potency probiotic as well as digestive enzymes along with a number of
> vitamins and minerals which I believe help overall digestion. I've made
> these choices from a reasonable amount of research on the matter and
> lots of trial and error.
>
> An elimination diet is one technique but it may also eliminate essential
> ingredients to having a healthy digestive eco-system. People with IBD,
> imho, already have their eco-system out of whack, so elimination diets
> may not be the best choice to re-balance things because the missing
> ingredients are still - missing. That's a simplified version for sake of
> this discussion but I hope the point is clear.
Low residue diets ( a must for me following a colonoscopy), liquid
diets, elemental diet, almost vegan (2-3 ounces of wild caught salmon
weekly was the exception) and more.
I had to give up the almost vegan diet and I could not eat enough to
keep my weight up. Well, not without eating sugar or something
similar.
And I try to track my nutrition on any new diet. There's an open
source program called CRON-o-meter (http://cronometer.com) which is
excellent for checking nutrition. It was originally intended for
people trying a calorie restricted diet.
> Fatigue is perfectly understandable since we are not getting the
> nutrients our bodies need for all it's functions and also it is
> expending more energy fighting this continual battle that is going on.
> All that takes energy away from the already burdened system.
since well before any recognized nutritional problems, I'm going with
the inflammation as the probably cause.
> Getting the right combination to re-right the ailing ship is no small or
> easy task.
the nutrients a person needs. There isn't any easy way to determine
what nutrients a person is having trouble getting, if you can't test
for it you have to use other ways to determine its level. And the
nutrients are often needed in combination. Look up combinatorial
complexity. And then there's the form and quantities available to us
in some unknown quality.
Take vitamin E for example, there are several forms available and one
person may respond better with one form and not at all with another.
I think that was part of the trouble with early vitamin E studies,
they didn't distinguish which form was used.
> I've been trying for over 10 years. I feel that I am on the
> right track though, and have made significant improvements so that I am
> mostly free from the constant worry about "how far away is the nearest
> clean bathroom facilities". If not for the damning effects from the
> prednisone my life would not be so bad. I realize this illness takes on
> many forms and each person has their own individual manifestations,
> however I also think there are many who share similarities, and of
> course we all want to share what works and what doesn't in hopes we may
> help someone else just as we have been helped by others.
>
> I do think rather strongly that a healthy diet is ever so important to
> regaining health and well being. Drugs cannot do that,
diet. There are a lot of opinions out there but even the best science
can't say much. If you have the time check out “The Gospel of Food:
Everything You Think You Know About Food Is Wrong”, it discussed the
limitations of most studies on diet.
> I know you have worked tirelessly to share so much, I do hope you can
> find the key or keys get things moving in the right direction.
>
> I've rambled enough for now.
that doesn’t mean we can't talk about it.
Take care,
--
Luke
Jeff
May 31, 2012, 7:48:33 PM5/31/12
to
Luke - thanks for the comprehensive response. I'm somewhat irregular
here so may miss things at times but glad I noticed your response.
I know when I'm having a flare everything seems to bother me too. My
thought on that is my intestines are so inflamed that pretty much
anything passing through is going to irritate them. So it's not really
that every food is bad, it just seems that way.
And my system can and does get thrown off easily so I do need to be
careful, and I'm not the most disciplined person either. What I really
need is someone to knock that slice of pizza out of my hand when I veer
off course.
As far as the chlorella, sorry it didn't help. I take the tablet form
and will take 10 or 12 with a meal but only take 2 at a time and space
them out over the meal. I feel this gives me something akin to a
controlled release. The benefits as I perceive them is that it reduces
some toxic or acidic effects of some foods that I eat, such as some
fruits, tomato sauces, coffee. It lets me eat a little more variety and
reduces some of the negative effects. By reducing the negative effects
it gives my intestines a chance to heal. Last time I saw my Gastro he
said one of the latest topics being bandied about by his colleagues was
"mucosal healing". I wanted to say "no shit Sherlock", but I kept my
mouth shut and just smiled, with the feeling that this was a good
orientation for them to be taking. To me it seemed like a little bit of
a shift in their paradigm.
regards,
Jeff
here so may miss things at times but glad I noticed your response.
I know when I'm having a flare everything seems to bother me too. My
thought on that is my intestines are so inflamed that pretty much
anything passing through is going to irritate them. So it's not really
that every food is bad, it just seems that way.
And my system can and does get thrown off easily so I do need to be
careful, and I'm not the most disciplined person either. What I really
need is someone to knock that slice of pizza out of my hand when I veer
off course.
As far as the chlorella, sorry it didn't help. I take the tablet form
and will take 10 or 12 with a meal but only take 2 at a time and space
them out over the meal. I feel this gives me something akin to a
controlled release. The benefits as I perceive them is that it reduces
some toxic or acidic effects of some foods that I eat, such as some
fruits, tomato sauces, coffee. It lets me eat a little more variety and
reduces some of the negative effects. By reducing the negative effects
it gives my intestines a chance to heal. Last time I saw my Gastro he
said one of the latest topics being bandied about by his colleagues was
"mucosal healing". I wanted to say "no shit Sherlock", but I kept my
mouth shut and just smiled, with the feeling that this was a good
orientation for them to be taking. To me it seemed like a little bit of
a shift in their paradigm.
regards,
Jeff
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