Magic Bullet for Crohn's management?
Jill McNeill
have been frustrated at the degradation of my quality of life over the
last few years. I was in remission for my first pregnancy, but
flaired during my 2nd, and have been on prednisone for the last 15
months. Once I weaned the baby, I started Humira, but without the
amazing results that was hoping for. I weaned off the prednisone, but
had to go back to 20mg/d last week, which I am disappointed about. I
am awaiting approval to try Humira every week instead of every other
week, but don't know if that will make any difference.
I'm willing to try almost anything to get control of my bowels again.
I have been seeing a psychologist specializing in stress and anxiety,
to try to work through the fear of pooing my pants when I am out. It
is bad enough when I'm on my own, but add one or two kids? That's
unthinkable right now, but I WANT to do things with my kids. And my
family. I want the family to take the dog for a walk after dinner --
but I can't be away from a bathroom. I WANT to go to the park with
the kids, but I end up going to the bathroom every 5 minutes "just in
case". I've thought about wearing Depends, but don't know that it
would control the mess that I have had in the past.
In addition to prednisone, I take immodium, questran, and pentasa
daily, and Humira injections every other week. I've tried
accupuncture. I try to eat salmon at least 3 times per week. I am
going to start Activa yogurt tomorrow daily to see if that helps.
Does anyone have any other suggestions for me? I'd really appreciate
it!
Jill McNeill
much in the way of improvement, and was losing soooo much weight that
I was even called into the CEO's office at work because he was worried
about me! I don't think I was getting sufficient nutrition on the SCD.
Jill McNeill
I meant 2000, not 2009.
Wayne Marsh
<f6c48c8d-e105-4edb...@k30g2000yqf.googlegroups.com>,
Jill McNeill <jill...@shaw.ca> wrote:
> I am
> going to start Activa yogurt tomorrow daily to see if that helps.
Based on my experience with it, it will make matters worse, not better.
It's marketed kind of coyly, but when you get past the coyness, what
Dannon is saying is that it's for constipation. And that's the way it
works.
I have no more help for you, unfortunately. Just keep trying to find a
biological or biological dose that works for you. Going on Remicade a
few years ago made all the difference for me, except for the
irreversible damage of many years of inflammation and surgeries.
Wayne Marsh Minneapolis, Minnesota, USA
wayne...@mac.com
Jill McNeill
early days to try to close a fistula. It didn't work for me.
Actually I was involved in the clinical trial for Humira and had good
results for the first 9 months, but then it started to love
effectiveness. My doctor is going to try to get me on another
biological trial, now that I've finished having babies!
zumone2002
I'm male, early 50s with CD and living in the USA. Not a doctor.
> I have had CD for 17 yrs, 3 resections, 2 kids (1 and 3 yrs old). I
> have been frustrated at the degradation of my quality of life over the
> last few years. I was in remission for my first pregnancy, but
> flaired during my 2nd, and have been on prednisone for the last 15
> months. Once I weaned the baby, I started Humira, but without the
> amazing results that was hoping for. I weaned off the prednisone, but
> had to go back to 20mg/d last week, which I am disappointed about. I
> am awaiting approval to try Humira every week instead of every other
> week, but don't know if that will make any difference.
How quickly did you wean off prednisone? My last GI did it very
slowly since a fast taper may cause CD to flare up.
He would tape me as follows 20mg, 17.5mg, 15mg, 12.5mg,
10,9,8,7,6,5,4,3,2,1 and off with 1 or 2 weeks on each dose depending
on how active my CD was at the time.
> I'm willing to try almost anything to get control of my bowels again.
> I have been seeing a psychologist specializing in stress and anxiety,
> to try to work through the fear of pooing my pants when I am out. It
> is bad enough when I'm on my own, but add one or two kids? That's
> unthinkable right now, but I WANT to do things with my kids. And my
> family. I want the family to take the dog for a walk after dinner --
> but I can't be away from a bathroom. I WANT to go to the park with
> the kids, but I end up going to the bathroom every 5 minutes "just in
> case". I've thought about wearing Depends, but don't know that it
> would control the mess that I have had in the past.
Have you tried tracking how often you go when you need to? Maybe you
go extra times to calm your fear. Knowing the number of times you
have to go might help.
How about diet?
Can and do you eat fiber? Some people with CD can handle high fiber
diets.
How about caffeine? IIRC it doesn't cause diarrhea but can trigger
a bowel movement.
Physical activity can increase bowel motility which may lead to more
frequent bowel movements. Back when I used a treadmill, I often
needed to go in the middle or right after exercising.
> In addition to prednisone, I take immodium, questran, and pentasa
> daily, and Humira injections every other week. I've tried
> accupuncture. I try to eat salmon at least 3 times per week. I am
> going to start Activa yogurt tomorrow daily to see if that helps.
I'm not sure about immodium but some people can get diarrhea from
questran and pentasa.
If you have medications for other reasons they might have diarrhea as
a side effect. Try a site like www.rxlist.com/ to check on side
effects.
> Does anyone have any other suggestions for me? I'd really appreciate
> it!
Do your doctors check you vitamin levels? Between CD and chronic
diarrhea you may be low.
Good luck!
--
Luke
Rufus
Second that - I tried Activia and had a bleeding episode after one cup
of it.
Yeah, it's for folks that are irregular or constipated, not for us...
--
- Rufus
Jill McNeill
Luke:
My taper was very gradual. My GI did suggest at my last visit that
perhaps I will just need to forever stay on a maintenance dose of
prednisone. For vanity reasons, I hate the puffy face I get on higher
doses, and in general feel that my goal should be to get off
prednisone, but whatever I replace it with would likely have its own
set of side effects, so perhaps I'm too hasty in my desire to stop.
> Have you tried tracking how often you go when you need to? Maybe you go extra times to calm your fear. Knowing the number of times you have to go might help.
The psychologist is helping with this to actually determine what is
perceived need vs. actual need. Unfortunately, right now the physical
side is very real, unpredictable and urgent.
> How about diet? Can and do you eat fiber? Some people with CD can handle high fiber diets. How about caffeine? IIRC it doesn't cause diarrhea but can trigger
> a bowel movement.
I've started introducing salads again to my diet quite successfully.
Previously the lettuce would be swimming in the toilet bowl very
shortly after being consumed. Do you know much about a suggested
"high fibre" diet? Some things have historically caused me more
difficulty (grapefruit), and some that I don't think twice about (I
eat whole grain bread all the time).
I've played around a bit with caffeine -- cutting it, reintroducing
it. Right now I have 1 coffee first thing in the morning in an effort
to clear my bowels so that I can get on with the rest of my day.
(BTW, what is "IIRC"?)
> Physical activity can increase bowel motility which may lead to more frequent bowel movements. Back when I used a treadmill, I often needed to go in the middle or right after exercising.
This is one reason why I don't do much exercise. I don't have the
space in my home, and I couldn't trust myself to do it in public.
>I'm not sure about immodium but some people can get diarrhea from questran and pentasa.
I've always wondered how effective the pentasa is. Do you take it?
Do you find it helpful in your CD management? The Questran really
makes a difference for me have had over 3 ft of large bowel removed,
as it binds up the extra bile in my stool. Without it, I'd be in the
bathroom much more than I already am.
> Do your doctors check you vitamin levels? Between CD and chronic diarrhea you may be low.
Just had bloodwork last week, and I have to take B12 injections
monthly as I am missing the portion of bowel that absorbs it.
> Good luck!
Thanks for your advice and good wishes.
Jill
Kofi
<f6c48c8d-e105-4edb...@k30g2000yqf.googlegroups.com>,
Jill McNeill <jill...@shaw.ca> wrote:
Progesterone rises in pregnancy and if you don't mind the increased
cancer risk, you might want to try progesterone, estrogen and/or
testosterone. They tend to be beneficial in autoimmune disease.
Have you tried the Ovamed helminth therapy <www.ovamed.de>?
In no particular order, you might want to try inulin, magnesium
(combined with phosphorus, calcium and potassium), low-dose naltrexone
(4.5mg/day), glutamine, intermittent fasting (only eating every other
day), carnitine, butyrate, folinic acid shots and vitamin D3. All of
these can help reduce inflammation and/or limit the processes behind
autoimmunity. I've been posting information about these here for
several years now.
You might want to run a general metabolic panel to check your levels of
vitamins, amino acids, minerals and enzymes.
K-Man
100%?.
Thanks!. Be well! :)
Jill McNeill
>
> - Show quoted text -
It's been 9 years now, but I think I did it for about 8 - 10 weeks,and
it was almost 100% with the exception of my medications and vitamin
suppliments. I was making my own yogurt, "bread", condiments, etc.
Jill McNeill
> In article
> <f6c48c8d-e105-4edb-a111-fb2b9ca28...@k30g2000yqf.googlegroups.com>,
>
> - Show quoted text -
As my 2nd pregnancy was a nightmare with my first ever extraintestinal
symptoms, I am hesitant to try the hormonal treatment. I was advised
prior to becoming pregnant that about symptoms in about 1/3 of
pregnancies improved, 1/3 were the same, and 1/3 worsened. I
experienced both ends of the spectrum with my 2 pregnancies.
Thanks for the info on Ovamed. I'm going to talk to my GI about any
clinical trials for this. From the abstract, however, I would have
been excluded as a candidate due to my previous resections.
Lots of useful suggestions, though. Thank you. I'll read more about
the other suggestions you've made.
Vanny
Sorry to hear about all your challenges. I am also a Crohn's patients and
have had symptoms from my childhood and 7 gut operations behind me. I have
no colon with 4 ileal resections and now have short bowel syndrome (aka
intestinal failure).
Before I start, like Luke I am also not a doctor. Please discuss all new
treatments or changes in medication regime with your doctor prior to
implementing the changes. Please note that supplements can interact with
certain prescription medications and make them less effective. Thus, all
treatments pharmaceutical or otherwise should be discussed with your doctor.
Firstly, I suggest that you get all your medical notes together if you have
not done this already and find out exactly where your disease is located and
make an appointment with your doctor after preparing for the meeting by
putting together a bulletpoint list of items to discuss based on what you
learn from your research. I suggest that you print out any relevant
literature, spend some time going through it for ideas that might help you
and file it for future reference. I guess that your current flare is also in
your small intestine, but because you can tolerate salads this might
indicate that the flare in the small intestine is dying down.
Secondly, I recommend that you start recording how you feel on a day, how
many BMs, nausea, etc. Try recording your CDAI on a weekly basis:
http://www.ibdjohn.com/cdai/
Use the Bristol Stool Scale to record BMs
http://en.wikipedia.org/wiki/Bristol_Stool_Scale
Use the comparative pain scale to record pain:
http://www.tipna.org/info/documents/ComparativePainScale.htm
Give yourself a score out of ten each day to indicate how you felt on
average that day. The wellness chart here might be a good start if you have
Excel
http://beyondibd.com/blog/treatment/how-keeping-a-diary-can-improve-your-health/
Here are some bowel diary templates to record BMs -
http://www.bcap.scot.nhs.uk/Bowel%20Diary.pdf
http://www.karephysio.com/Keeping_A_Record.pdf
http://www.medtronic.com.au/wcm/groups/mdtcom_sg/@mdt/@ap/@au/@neuro/documents/documents/fec-trk-symptoms-au-pdf.pdf
For healthy kidneys you should be voiding over 1 litre urine a day,
otherwise you can end up with kidney stones and other complications, such as
kidney failure, deep vein thrombosis, stroke, etc. So keep hydrated - ORT
could help you here: http://en.wikipedia.org/wiki/Oral_rehydration_therapy
You don't have to write a book - just a couple of sentences will do. There
are plenty of diary templates on the internet, although I do not advocate
filling out a diary on the web for privacy reasons. Here are a few exampley:
http://www.healthcentral.com/ibd/c/diaries/create
http://beyondibd.com/blog/treatment/how-keeping-a-diary-can-improve-your-health/
http://organizedwisdom.com/IBD_Food_Diary
http://www.everydayhealth.com/ulcerative-colitis/ulcerative-colitis-symptom-diary.aspx
Writing a patient's diary really helps me communicate with my doctors when I
am tired, stressed from waiting and just want to crawl back into bed and not
have to talk to anyone. If I have a list of items to discuss it helps me to
focus and we have a better discussion with a better outcome. A key factor is
that doctors tend to respond better to numbers and figures and not just
vague 'I don't feel wells'. They want to know how often you go, how many
times you have to get up in the night, bleeding, nausea, vomiting,
intestinal blockages, etc. I have also put together a health CV with all the
usual information that one is asked for - it really helps me with new
doctors and I handed the medical examiner a copy for the disability medical.
From what you have written you have still have a few treatments to try out
and as Luke said managing your diet is one of them. The BRAT (bananas, rice,
apple mousse, tea/toast) diet is banded about as a dietary basis for those
with diarrhoea and you can introduce foods one at a time to see which you
can tolerate at present.
Activa yoghurt equivalent did not work for me. The reason being that when in
a severe/fulminant flare many Crohn's patients develop a secondary lactose
intolerance - this usually goes away when the disease settles down. However,
this does not mean that it will not work for you - it shouldn't harm you to
try it for a couple of days to find out.
I suggest that you think about removing milk and soft cheeses (not good for
Crohn's because of the high bacterial/fungal content) from your diet. When
undigested food hits the colon due to diarrhoea it causes mega problems. The
colon's main job to to reabsorb minerals and water from the food waste and
it is not equipped to cope with mountains of undigested food.
http://213.175.206.48/~familydo/media/upload/Bowels%20sample.pdf This is
where Questran comes into its own because it is not just undigested food but
also masses of bile salts that hit the colon and this increases diarrhoea
exponentially. Long-term use of Questran can lead to deficiencies of the
fat-soluble vitamins (A, D, E, K) and it can cause intestinal blockages if
you have stenoses (lengths of narrowed intestine) or strictures (rings of
narrowed intestine).
It might be a good idea to check for lactose, glucose and fructose
intolerances. However, you should not be eating sweets or drinking sodas or
colas with diarrhoea. 1 in 3 people are fructose intolerant and the high use
of high-fructose corn/maize syrup in prepared foods and sodas could be a
confounding factor in, for example, irritable bowel syndrome. I don't
tolerate sodas and colas, coffee, chocolate, sweets, etc. Carbohydrates
should be in their complex form (you will know all about this having done
the SCID) - pasta, rice, potatoes, polenta, couscous, cake, etc.
With severe/fulminant Crohn's you end up with (reversible when the flare
dies down) intestinal failure (aka short bowel syndrome) and this paper
deals with the treatment of said. It has a great section on diet and I
really recommend that you print it out and read through it carefully. There
is a comprehensive section on the treatment of diarrhoea and what not to
eat:
http://www.healthsystem.virginia.edu/internet/digestive-health/nutritionarticles/September2005.pdf
Low fibre vegetables (caveat: fructose content)
Potatoes, carrots, courgettes and marrow (no seeds), sweet potatoes,
broccoli and cauliflower flowers only, pumpkin,
Fruit
Only steamed apples, pears, peaches, apricots (no skins, no seeds, no syrup
or sugar). No citrus fruit. Grapefruit contains compounds that interact with
many medications and can cause severe problems in drug therapy.
Exercise
You might be able to do some of these exercises: 6-week workout for home
http://www.dailymail.co.uk/health/fitnessWorkOutArms.html Otherwise just
gentle walking on the spot should help.
Steroid side-effects
For fewer steroid side-effects some doctors advocate taking the morning
steroid dose on alternative days - this also is protective for the adrenal
glands that are less likely to shut down on an alternate day steroid regime.
This approach might not be possible with yourself because your disease is so
severe.
Enemas Steroid or 5-ASA
A nightly steroid enema might be useful as an additional therapy to oral
steroids. Oral Budesonide (aka Entocort) has fewer side-effects than
Prednisolone, but is only useful for Crohn's of the small intestine and the
ascending colon. However, a Budesonide enema might help you and reduce your
Prednisolone load.
You don't mention 6-MP (aka Purinethol) or Methotrexate or Thalidomide as
past treatments.
Antibiotic treatment
Some doctors prescribe the antibiotics Ciprofloxacin or Flagyl (aka
Metronidazole) as concomitant treatment in a severe flare in the colon only.
Natalizumab aka Tysabri
This would appear to be an alternative treatment if the weekly Humira is not
effective.
http://en.wikipedia.org/wiki/Treatment_of_Crohn%27s_disease
http://www.drugs.com/pro/tysabri.html
Unfortunately, the consensus of opinion in the literature is that the
medicines just dampen the disease down and it still has to burn itself out
of a flare, which I am sure you are aware of. You sound as though you are
medication resistant, which a minority of patients are and this is very
problematic and can lead to a further operation in the future being
unavoidable.
So, the campaign of action could look like this:
- Determine where the Crohn's activity is
- Implement preliminary dietary changes
- Discuss the various treatment options with your doctor(s)
- Find respite care for the children to support you through this flare -
family/kindergarten/neighbour/social services
- Build in down time for yourself - your children should go to bed early so
that you have some time in the evenings for you
- Stick to a daily routine to reduce stress and go to bed early
Keep on reassuring your children, especially your three year old, that how
you feel has nothing to do with them and that you are very sick but will get
better in the future - they are like little radars and can start imagining
all sorts of things and start feeling guilty about being too much trouble
for you. This is particularly important if you need to spend some time away
from them, so they don't feel rejected.
If all else fails get a second opinion. I refer you to www.drugs.com and
www.rxlist.com for drug interactions and side-effects and www.medscape.com
and www.webmd.com for further disease information.
All the best,
Vanny
"Jill McNeill" <jill...@shaw.ca> schrieb im Newsbeitrag
news:f6c48c8d-e105-4edb...@k30g2000yqf.googlegroups.com...
Jill McNeill
> Hi Jill,
>
> Sorry to hear about all your challenges. I am also a Crohn's patients and
> have had symptoms from my childhood and 7 gut operations behind me. I have
> no colon with 4 ileal resections and now have short bowel syndrome (aka
> intestinal failure).
>
> Before I start, like Luke I am also not a doctor. Please discuss all new
> treatments or changes in medication regime with your doctor prior to
> implementing the changes. Please note that supplements can interact with
> certain prescription medications and make them less effective. Thus, all
> treatments pharmaceutical or otherwise should be discussed with your doctor.
>
> Firstly, I suggest that you get all your medical notes together if you have
> not done this already and find out exactly where your disease is located and
> make an appointment with your doctor after preparing for the meeting by
> putting together a bulletpoint list of items to discuss based on what you
> learn from your research. I suggest that you print out any relevant
> literature, spend some time going through it for ideas that might help you
> and file it for future reference. I guess that your current flare is also in
> your small intestine, but because you can tolerate salads this might
> indicate that the flare in the small intestine is dying down.
>
> Secondly, I recommend that you start recording how you feel on a day, how
> many BMs, nausea, etc. Try recording your CDAI on a weekly basis:http://www.ibdjohn.com/cdai/
>
>
> Use the comparative pain scale to record pain:http://www.tipna.org/info/documents/ComparativePainScale.htm
>
> Give yourself a score out of ten each day to indicate how you felt on
> average that day. The wellness chart here might be a good start if you have
>
> Here are some bowel diary templates to record BMs -http://www.bcap.scot.nhs.uk/Bowel%20Diary.pdfhttp://www.karephysio.com/Keeping_A_Record.pdfhttp://www.medtronic.com.au/wcm/groups/mdtcom_sg/@mdt/@ap/@au/@neuro/...
>
> For healthy kidneys you should be voiding over 1 litre urine a day,
> otherwise you can end up with kidney stones and other complications, such as
> kidney failure, deep vein thrombosis, stroke, etc. So keep hydrated - ORT
> could help you here: http://en.wikipedia.org/wiki/Oral_rehydration_therapy
>
> You don't have to write a book - just a couple of sentences will do. There
> are plenty of diary templates on the internet, although I do not advocate
>
> Writing a patient's diary really helps me communicate with my doctors when I
> am tired, stressed from waiting and just want to crawl back into bed and not
> have to talk to anyone. If I have a list of items to discuss it helps me to
> focus and we have a better discussion with a better outcome. A key factor is
> that doctors tend to respond better to numbers and figures and not just
> vague 'I don't feel wells'. They want to know how often you go, how many
> times you have to get up in the night, bleeding, nausea, vomiting,
> intestinal blockages, etc. I have also put together a health CV with all the
> usual information that one is asked for - it really helps me with new
> doctors and I handed the medical examiner a copy for the disability medical.
>
> From what you have written you have still have a few treatments to try out
> and as Luke said managing your diet is one of them. The BRAT (bananas, rice,
> apple mousse, tea/toast) diet is banded about as a dietary basis for those
> with diarrhoea and you can introduce foods one at a time to see which you
> can tolerate at present.
>
> Activa yoghurt equivalent did not work for me. The reason being that when in
> a severe/fulminant flare many Crohn's patients develop a secondary lactose
> intolerance - this usually goes away when the disease settles down. However,
> this does not mean that it will not work for you - it shouldn't harm you to
> try it for a couple of days to find out.
>
> I suggest that you think about removing milk and soft cheeses (not good for
> Crohn's because of the high bacterial/fungal content) from your diet. When
> undigested food hits the colon due to diarrhoea it causes mega problems. The
> colon's main job to to reabsorb minerals and water from the food waste and
> where Questran comes into its own because it is not just undigested food but
> also masses of bile salts that hit the colon and this increases diarrhoea
> exponentially. Long-term use of Questran can lead to deficiencies of the
> fat-soluble vitamins (A, D, E, K) and it can cause intestinal blockages if
> you have stenoses (lengths of narrowed intestine) or strictures (rings of
> narrowed intestine).
>
> It might be a good idea to check for lactose, glucose and fructose
> intolerances. However, you should not be eating sweets or drinking sodas or
> colas with diarrhoea. 1 in 3 people are fructose intolerant and the high use
> of high-fructose corn/maize syrup in prepared foods and sodas could be a
> confounding factor in, for example, irritable bowel syndrome. I don't
> tolerate sodas and colas, coffee, chocolate, sweets, etc. Carbohydrates
> should be in their complex form (you will know all about this having done
> the SCID) - pasta, rice, potatoes, polenta, couscous, cake, etc.
>
> With severe/fulminant Crohn's you end up with (reversible when the flare
> dies down) intestinal failure (aka short bowel syndrome) and this paper
> deals with the treatment of said. It has a great section on diet and I
> really recommend that you print it out and read through it carefully. There
> is a comprehensive section on the treatment of diarrhoea and what not to
>
> Low fibre vegetables (caveat: fructose content)
> Potatoes, carrots, courgettes and marrow (no seeds), sweet potatoes,
> broccoli and cauliflower flowers only, pumpkin,
>
> Fruit
> Only steamed apples, pears, peaches, apricots (no skins, no seeds, no syrup
> or sugar). No citrus fruit. Grapefruit contains compounds that interact with
> many medications and can cause severe problems in drug therapy.
>
> Exercise
> gentle walking on the spot should help.
>
> Steroid side-effects
> For fewer steroid side-effects some doctors advocate taking the morning
> steroid dose on alternative days - this also is protective for the adrenal
> glands that are less likely to shut down on an alternate day steroid regime.
> This approach might not be possible with yourself because your disease is so
> severe.
>
> Enemas Steroid or 5-ASA
> A nightly steroid enema might be useful as an additional therapy to oral
> steroids. Oral Budesonide (aka Entocort) has fewer side-effects than
> Prednisolone, but is only useful for Crohn's of the small intestine and the
> ascending colon. However, a Budesonide enema might help you and reduce your
> Prednisolone load.
>
> You don't mention 6-MP (aka Purinethol) or Methotrexate or Thalidomide as
> past treatments.
>
> Antibiotic treatment
> Some doctors prescribe the antibiotics Ciprofloxacin or Flagyl (aka
> Metronidazole) as concomitant treatment in a severe flare in the colon only.
>
> Natalizumab aka Tysabri
> This would appear to be an alternative treatment if the weekly Humira is not
>
> Unfortunately, the consensus of opinion in the literature is that the
> medicines just dampen the disease down and it still has to burn itself out
> of a flare, which I am sure you are aware of. You sound as though you are
> medication resistant, which a minority of patients are and this is very
> problematic and can lead to a further operation in the future being
> unavoidable.
>
> So, the campaign of action could look like this:
>
> - Determine where the Crohn's activity is
> - Implement preliminary dietary changes
> - Discuss the various treatment options with your doctor(s)
> - Find respite care for the children to support you through this flare -
> family/kindergarten/neighbour/social services
> - Build in down time for yourself - your children should go to bed early so
> that you have some time in the evenings for you
> - Stick to a daily routine to reduce stress and go to bed early
>
> Keep on reassuring your children, especially your three year old, that how
> you feel has nothing to do with them and that you are very sick but will get
> better in the future - they are like little radars and can start imagining
> all sorts of things and start feeling guilty about being too much trouble
> for you. This is particularly important if you need to spend some time away
> from them, so they don't feel rejected.
>
> If all else fails get a second opinion. I refer you towww.drugs.comandwww.rxlist.comfor drug interactions and side-effects andwww.medscape.com
>
> All the best,
>
> Vanny
>
> "Jill McNeill" <jillsj...@shaw.ca> schrieb im Newsbeitragnews:f6c48c8d-e105-4edb...@k30g2000yqf.googlegroups.com...
>
>
>
> >I have had CD for 17 yrs, 3 resections, 2 kids (1 and 3 yrs old). I
> > have been frustrated at the degradation of my quality of life over the
> > last few years. I was in remission for my first pregnancy, but
> > flaired during my 2nd, and have been on prednisone for the last 15
> > months. Once I weaned
>
>
> read more »- Hide quoted text -
>
> - Show quoted text -
Vanny, what a source of information you are! I have a lot of reading
to do here, with respect to all your links, and I thank you immensely
for that.
To answer a few of your questions, my current issues are mostly
rectal, although I have had my terminal illeum and accending colon
removed in 3 resections between 1985 and 1997. I was non-responsive
to 6MP. I am currently on a 10-day dose of both Cipro and Flagyl, as
a result of the current flare.
Medically, if approved, I am going to give the weekly Humira a few
months to see if there's any improvement. In the meantime, I will be
making dietary changes in an attempt to find my comfort zone. Yes,
there are sacrifices I will need to make (I'll sure miss my morning
latte), but if it helps...
(BTW - I smiled at your complexed carbohydrate list including cake.
Was that wishful thinking?)
Thank you, again!
Jill
Vanny
sweet you are better off with homemade carrot or banana cake using half the
amount of sugar actually necessary for the recipe, than reaching for sweets
and chocolates. Of course, you have to have the energy to bake a cake in the
first instance, which means that I don't bake very often, but when I do I
bake as much as I can and freeze pieces for the future.
Another tip is to dilute fruit juice 1:1 or 1:2 with water and only drink
with breakfast in the morning if you tolerate it. Also when I cook I always
cook far more than is necessary and freeze portions - this helps me when I
am totally unable to do anything and has been a life saver over the past few
years.
My diet is very restricted, but if I do not take care I can end up making
myself a lot sicker. I can confirm that it is possible to live without milk
and chocolate - I do allow myself a few marshmallows now and then and the
occasional fruit gum as a treat.
I wish you every success and hope that you get this rotten disease under
control. I can't imagine looking after 2 small children and running the
Crohn's gauntlet. I don't envy you at all.
Vanny
...snipped...
zumone2002
> My taper was very gradual. My GI did suggest at my last visit that
> perhaps I will just need to forever stay on a maintenance dose of
> prednisone. For vanity reasons, I hate the puffy face I get on higher
> doses, and in general feel that my goal should be to get off
> prednisone, but whatever I replace it with would likely have its own
> set of side effects, so perhaps I'm too hasty in my desire to stop.
My last GI was willing to use a maintenance dose of pred if I really
needed it but he was talking about 10 mg / day.
Pred has a lot of bad side effects so while it is really good in the
sort term, the long term usually sees more problems.
Has your doctor tried you on Entocort (budesinide)? It is less
systemic than pred but works well for many people with CD. In general
it has less side effects than pred at equivalent doses.
> The psychologist is helping with this to actually determine what is
> perceived need vs. actual need. Unfortunately, right now the physical
> side is very real, unpredictable and urgent.
Do you prepare for emergencies? Carry an emergency toilet in the car
(bucket / wipes); change of clothes, etc? I used to carry a couple
adult diapers in my trunk, just in case.
> I've started introducing salads again to my diet quite successfully.
> Previously the lettuce would be swimming in the toilet bowl very
> shortly after being consumed. Do you know much about a suggested
> "high fibre" diet? Some things have historically caused me more
> difficulty (grapefruit), and some that I don't think twice about (I
> eat whole grain bread all the time).
From what I've learned with CD fiber is a very individual thing. For
instance right now my diet has stuff that might send other members of
this group to the hospital. A pound of raw veggies / day, 3 or 4 raw
fruits a day, around ½ cup of nuts maybe 2 cups of whole grains each
day.
But it varies, I was hospitalized this April due to CD. My best
guess is that the colonoscopy I had in late March screwed things up so
when I returned to my normal diet (above) I couldn't handle it. After
getting out of the hospital I spent about one month going from a
minimal residue diet back to my usual diet.
I suggest slowing adding new high fiber foods, maybe 1 every 3 days
to see which ones you can tolerate. And CD changes for each person so
something that you can't eat now might be fine next year.
What worked best was I had a few months when my health improved so I
started a diet with a lot less processed foods and a lot more raw
fruits and veggies. I was on Colestid (Questran) and used a OTC
probiotic. Then I started a regular exercise program, 1 to 1.5 hours
a day, 6 days a week. One day aerobic and stretching the next
strength training / bone loading and stretching. The time includes
time for changing into and out of workout clothes, warm ups, cool
downs, setting up the equipment, a shower and bathroom breaks as
needed.
I actually got regular solid bowel movements about a month after
starting. Unfortunately, my PCP put me on a 10 day course of pred for
another problem and my GI was concerned about the quick taper. So he
put me on Flagyl and I got immediate diarrhea from it. Even after
stopping Flagyl I wasn't able to get that good again.
> I've played around a bit with caffeine -- cutting it, reintroducing
> it. Right now I have 1 coffee first thing in the morning in an effort
> to clear my bowels so that I can get on with the rest of my day.
> (BTW, what is "IIRC"?)
That makes sense, I try to go before any long (an hour or more) car
trips.
IIRC – If I Recall Correctly
> This is one reason why I don't do much exercise. I don't have the
> space in my home, and I couldn't trust myself to do it in public.
Exercise helps with your overall health so even with these problems
you should try to do some. If space is tight, you can find some
exercises that should fit. Jogging in place for aerobic for instance
(to make it easier on the feet, use a cushioned mat like some store
greeters use). Read up on bone loading too, with CD calcium
absorption can be an issue and that can lead to Osteoporosis.
Have you had a DEXA scan to check on your bone density?
> I've always wondered how effective the pentasa is. Do you take it?
Not any more. It was one of the 1st meds tried and I got sicker on
it. My first GI became my first GI because he refused to believe I
got sicker under his care. Pentasa gave me fatigue and joint pains.
I was already having constant diarrhea so I don't know if I got that
side effect too.
I've seen some review articles / meta analysis on 5 Aminosalicylates
and CD. At best they might help if the CD is mild. I've tried four
formulations, the best one didn't help but didn't make me much sicker.
> Do you find it helpful in your CD management? The Questran really
> makes a difference for me have had over 3 ft of large bowel removed,
> as it binds up the extra bile in my stool. Without it, I'd be in the
> bathroom much more than I already am.
I used Colestid (Questran) for awhile but got side effects from it
too. I think I used it from 2002 into 2006 (whatever year the generic
came out). The generic had the same side effects but worse. I
stopped it and my health improved. I got mental fatigue and muscles
pains from it.
> Just had bloodwork last week, and I have to take B12 injections
> monthly as I am missing the portion of bowel that absorbs it.
In case you don't do it now, ask them to check your B12 level at
least yearly. I started with weekly injections to build my reserve up
and then went to monthly. But now I'm every 2 weeks and an extra shot
every 3 months. This seems to work for me.
I think I should tell you that I seem to be one of those people who
are hypersensitive to many medications. After I was dxed we tried a
dozen meds and the only one that worked consistently was pred. So
don't avoid something because it didn't work for me, AFAIK (As Far As
I Know), most meds don't work well for me.
I'm currently trying Humira once a week (started in late April) but
haven't seen any major improvements in my health. Of course I started
a prep tape in may and that always give me severe fatigue.
Best of luck!
--
Luke
vorlah
Gastro the best an his partner a female is 2nd best .. daily i take
imodium an codeine ..it takes about 2 hours to get me on track but it
helps i take 20 codeine a day an about 15 imodium OR more depends on how
bad ..i set NO limit i have to go top work ..i wake @ 4am begin my meds
so by 6:35 i can leave my house i have family that cares about me so i
have to do this ..i also take metamucil 6 caps a day drink coffee and
lottsa water ..pain an blood are constant but what else can i do ..we
ALL can make it ..i have lost a year already because of this crohns
-ibd-an diverticulitis ...i have suffered thru 3 blockages not fun ..we
least i can tell how my body is workin ..the net has tons of advice ..
but find a great humane gastro ..D
TonyH
>
> >> For healthy kidneys you should be voiding over 1 litre urine a day,
> >> otherwise you can end up with kidney stones and other complications, such as
> >> kidney failure, deep vein thrombosis, stroke, etc. So keep hydrated - ORT
> >> could help you here: http://en.wikipedia.org/wiki/Oral_rehydration_therapy
>
> >> You don't have to write a book - just a couple of sentences will do. There
> >> are plenty of diary templates on the internet, although I do not advocate
> >> gentle walking on the spot should help.
>
> >> Steroid side-effects
> >> For fewer steroid side-effects some doctors advocate taking the morning
> >> steroid dose on alternative days - this also is protective for the adrenal
> >> glands that are less likely to shut down on an alternate day steroid regime.
> >> This approach might not be possible with yourself because your disease is so
> >> severe.
>
> >> Enemas Steroid or 5-ASA
> >> A nightly steroid enema might be useful as an additional therapy to oral
> >> steroids. Oral Budesonide (aka Entocort) has fewer side-effects than
> >> Prednisolone, but is only useful for Crohn's of the small intestine and the
> >> ascending colon. However, a Budesonide enema might help you and reduce your
> >> Prednisolone load.
>
> >> You don't mention 6-MP (aka Purinethol) or Methotrexate or Thalidomide as
> >> past treatments.
>
> >> Antibiotic treatment
> >> Some doctors prescribe the antibiotics Ciprofloxacin or Flagyl (aka
> >> Metronidazole) as concomitant treatment in a severe flare in the colon only.
>
> >> Natalizumab aka Tysabri
> >> This would appear to be an alternative treatment if the weekly Humira is not
>
> >> Unfortunately, the consensus of opinion in the literature is that the
> >> medicines just dampen the disease down and it still has to burn itself out
> >> of a flare, which I am sure you are aware of. You sound as though you are
> >> medication resistant, which a minority of patients are and this is very
> >> problematic and can lead to a further operation in the future being
> >> unavoidable.
>
> >> So, the campaign of action could look like this:
>
> >> - Determine where the Crohn's activity is
> >> - Implement preliminary dietary changes
> >> - Discuss the various treatment options with your doctor(s)
> >> - Find respite care for the children to support you through this flare -
> >> family/kindergarten/neighbour/social services
> >> - Build in down time for yourself - your children should go to bed early so
> >> that you have some time in the evenings for you
> >> - Stick to a daily routine to reduce stress and go to bed early
>
> >> Keep on reassuring your children, especially your three year old, that how
> >> you feel has nothing to do with them and that you are very sick but will get
> >> better in the future - they are like little radars and can start imagining
> >> all sorts of things and start feeling guilty about being too much trouble
> >> for you. This is particularly important if you need to spend some time away
> >> from them, so they don't feel rejected.
>
> >> If all else fails get a second opinion. I refer you towww.drugs.comandwww.rxlist.comfordrug interactions and side-effects andwww.medscape.com
>
> read more »
Jill - There's obviously no way I can say how it will work for you or
anyone else, but going to a double dose of Humira (2 shots taken at
the same sitting, every 2 weeks) really did the trick for me. I
started off on simply one per week or one every two weeks (can't
remember which), and my Crohn's stayed active. My doctor then
instructed me to do a "load up" dose of 4 shots all at once, and then
continuing with 2 shots every 2 weeks thereafter.
That recipe put me in full remission, and I've pretty much stayed
there for the last 2 years.
Tony (Evanston, IL)
Jill
>
> >> For healthy kidneys you should be voiding over 1 litre urine a day,
> >> otherwise you can end up with kidney stones and other complications, such as
> >> kidney failure, deep vein thrombosis, stroke, etc. So keep hydrated - ORT
> >> could help you here: http://en.wikipedia.org/wiki/Oral_rehydration_therapy
>
> >> You don't have to write a book - just a couple of sentences will do. There
> >> are plenty of diary templates on the internet, although I do not advocate
> >> gentle walking on the spot should help.
>
> >> Steroid side-effects
> >> For fewer steroid side-effects some doctors advocate taking the morning
> >> steroid dose on alternative days - this also is protective for the adrenal
> >> glands that are less likely to shut down on an alternate day steroid regime.
> >> This approach might not be possible with yourself because your disease is so
> >> severe.
>
> >> Enemas Steroid or 5-ASA
> >> A nightly steroid enema might be useful as an additional therapy to oral
> >> steroids. Oral Budesonide (aka Entocort) has fewer side-effects than
> >> Prednisolone, but is only useful for Crohn's of the small intestine and the
> >> ascending colon. However, a Budesonide enema might help you and reduce your
> >> Prednisolone load.
>
> >> You don't mention 6-MP (aka Purinethol) or Methotrexate or Thalidomide as
> >> past treatments.
>
> >> Antibiotic treatment
> >> Some doctors prescribe the antibiotics Ciprofloxacin or Flagyl (aka
> >> Metronidazole) as concomitant treatment in a severe flare in the colon only.
>
> >> Natalizumab aka Tysabri
> >> This would appear to be an alternative treatment if the weekly Humira is not
>
> >> Unfortunately, the consensus of opinion in the literature is that the
> >> medicines just dampen the disease down and it still has to burn itself out
> >> of a flare, which I am sure you are aware of. You sound as though you are
> >> medication resistant, which a minority of patients are and this is very
> >> problematic and can lead to a further operation in the future being
> >> unavoidable.
>
> >> So, the campaign of action could look like this:
>
> >> - Determine where the Crohn's activity is
> >> - Implement preliminary dietary changes
> >> - Discuss the various treatment options with your doctor(s)
> >> - Find respite care for the children to support you through this flare -
> >> family/kindergarten/neighbour/social services
> >> - Build in down time for yourself - your children should go to bed early so
> >> that you have some time in the evenings for you
> >> - Stick to a daily routine to reduce stress and go to bed early
>
> >> Keep on reassuring your children, especially your three year old, that how
> >> you feel has nothing to do with them and that you are very sick but will get
> >> better in the future - they are like little radars and can start imagining
> >> all sorts of things and start feeling guilty about being too much trouble
> >> for you. This is particularly important if you need to spend some time away
> >> from them, so they don't feel rejected.
>
Isn't there a concern about addiction to codeine? Also, I always
thought that metamucil was to soften things up, so taking imodium and
then metamucil -- isn't that counterproductive? What time do you go
to bed to be up at 4am every day? I've been much better in the last
several days since finishing my flagyl and cipro prescriptions. I'm
down from 20BMs/d to about 4 or 5! I also did my first "weekly" shot
of Humira on Friday instead of bi-weekly. Still need to gain the
confidence to not get worried when I'm away from the toilet but I've
been out 2 nights for an after-dinner walk with my husband and kids!
Thanks for sharing your story and advise with me. It's nice to hear
how others are managing.
Jill
>
> > >> All the best,
>
> > >> Vanny
>
> > >> "Jill McNeill" <jillsj...@shaw.ca> schrieb im
>
> > ...
>
> > read more »
>
> Jill - There's obviously no way I can say how it will work for you or
> anyone else, but going to a double dose of Humira (2 shots taken at
> the same sitting, every 2 weeks) really did the trick for me. I
> started off on simply one per week or one every two weeks (can't
> remember which), and my Crohn's stayed active. My doctor then
> instructed me to do a "load up" dose of 4 shots all at once, and then
> continuing with 2 shots every 2 weeks thereafter.
>
> That recipe put me in full remission, and I've pretty much stayed
> there for the last 2 years.
>
> Tony (Evanston, IL)
I'm so happy for you, Tony. And glad that it worked that way.
Actually in Vancouver, the standard protocol for starting Humira is 4
doses the first time, then 2 doses 2 weeks later, and then 1 dose
every 2 weeks thereafter. I did get approval and started doing 1 dose
every week just this past Friday, so hopefully that will make a
difference. I was part of the drug trial I don't know maybe 5 or 6
years ago for Humira, and it worked well for me for about 9 months,
but then it was less effective for the remainder of the trial year.
I'm just concerned in case I've maybe built up an immunity to it or
something. Do you continue to take Humira while in remission? Is
that what is keeping it at bay?
Thanks for your info.
Jill
TonyH
> > anyone else, but going to a double dose of Humira (2 shots taken at
> > the same sitting, every 2 weeks) really did the trick for me. I
> > started off on simply one per week or one every two weeks (can't
> > remember which), and my Crohn's stayed active. My doctor then
> > instructed me to do a "load up" dose of 4 shots all at once, and then
> > continuing with 2 shots every 2 weeks thereafter.
>
> > That recipe put me in full remission, and I've pretty much stayed
> > there for the last 2 years.
>
> > Tony (Evanston, IL)
>
> I'm so happy for you, Tony. And glad that it worked that way.
> Actually in Vancouver, the standard protocol for starting Humira is 4
> doses the first time, then 2 doses 2 weeks later, and then 1 dose
> every 2 weeks thereafter. I did get approval and started doing 1 dose
> every week just this past Friday, so hopefully that will make a
> difference. I was part of the drug trial I don't know maybe 5 or 6
> years ago for Humira, and it worked well for me for about 9 months,
> but then it was less effective for the remainder of the trial year.
> I'm just concerned in case I've maybe built up an immunity to it or
> something. Do you continue to take Humira while in remission? Is
> that what is keeping it at bay?
>
> Thanks for your info.
>
> Jill
Jill - Thanks very much. Yes, I continue to stay on the 2 shots every
2 weeks schedule while in remission. I can only assume that this is
what is keeping the disease at bay, but I can't authoritatively say
one way or the other. Good luck!
Tony
Vanny
I am going to discuss Humira with my internist next Monday. Would you mind
telling me if you are on anything else besides Humira?
Is there anything else I should be aware of except for the usual things,
tuberculosis testing throughout, opportunistic fungal infections, etc.?
http://www.drugs.com/pro/humira.html
I would rather inject myself than go for Remicade infusions, although I am
aware that Humira is generally given when all other things have failed and I
might have to go the Remicade route depending on my doctor.
My biggest challenge is that I have mild heart failure with annoying heart
murmurs (heart stops and then resets itself every 20 sec or so) and Humira
can exacerbate heart failure. This was caused by having blood sepsis a
couple of times - first time due to inadequately treated Crohn's, second
time due to contamination of the central venous catheter for TPN - total
parenteral nutrition.
Many thanks.
Vanny
"TonyH" <ahi...@comcast.net> schrieb im Newsbeitrag
news:4dbd07b4-4241-421f...@j19g2000yqk.googlegroups.com...
TonyH
disease went into remission, my doctor told me to stop. I haven't had
a Pentasa for probably a year now, and the absence of that drug has
had no impact on my remission. Now, I only take Humira and a daily OTC
Prilosec. That's it, other than various supplements and Omega 3 stuff.
I think that article you linked below pretty much sums up the things
to be aware of, at least in the short term. As far as I can tell, no
one really knows what the long term risks are...
My main side effect is an injection site reaction. I get a big
strawberry, about 2 inches in diameter, at each injection site. They
last for a few days then go away. No big deal really.
Tony
On Sep 3, 1:10 am, "Vanny" <Vannyss2...@antispam.com> wrote:
> Hi,
>
> I am going to discuss Humira with my internist next Monday. Would you mind
> telling me if you are on anything else besides Humira?
>
> Is there anything else I should be aware of except for the usual things,
> tuberculosis testing throughout, opportunistic fungal infections, etc.?http://www.drugs.com/pro/humira.html
>
> I would rather inject myself than go for Remicade infusions, although I am
> aware that Humira is generally given when all other things have failed and I
> might have to go the Remicade route depending on my doctor.
>
> My biggest challenge is that I have mild heart failure with annoying heart
> murmurs (heart stops and then resets itself every 20 sec or so) and Humira
> can exacerbate heart failure. This was caused by having blood sepsis a
> couple of times - first time due to inadequately treated Crohn's, second
> time due to contamination of the central venous catheter for TPN - total
> parenteral nutrition.
>
> Many thanks.
>
> Vanny
>
> "TonyH" <ahin...@comcast.net> schrieb im Newsbeitragnews:4dbd07b4-4241-421f...@j19g2000yqk.googlegroups.com...
mgbio
I spent the week at Camp Oasis with a Humira Rep and was asking her
about the medication. I got some good information for myself and feel
better about having to use it if need be.
It would seem to me that it would be safer than Remicade since there are
no mouse antibodies used in its making, though I don't know for sure.
This is certainly a point to be discussed with your GI when considering it.
Good luck!
:) mgbio
Jill
>
> - Show quoted text -
Vanny:
In addition to my weekly injections of Humira, I am taking prednisone
(20mg/d), Pentasa (3g/d), Immodium and Questran. As per Tony, I also
get a site reaction like a gigantic mosquito bite from the injections
(more pronounced on my legs than my abdomin) that goes away after 3 or
4 days. I've had no other serious side effects, but of course the
list of possible reactions is a bit daunting.
Good luck!
Jill
Vanny
If I inject myself with folic acid and don't pay enough attention and some
ends up subcutaneous instead of intramuscular I sometimes end up with a red
strawberry patch on my thigh, but in the meantime my technique has improved
considerably.
From my reading Humira is used where Remicade has been effective, but
eventually failed due to immune reactions, side-effects, etc., and for a lot
of patients seems to produce (anecdotally) better results than
Remicade.There are a lot of users at this newsgroup who swear by it. I also
have a friend who is keen for me to start the treatment and it works wonders
for her. She has been through all of the usual Crohn's pills and potions and
the Remicade treatment eventually failed. She came off the Humira a couple
of months ago, but started to flare after a couple of weeks, so she was put
back on it and is now feeling a lot better.
I would have to be on Opium Tincture*, Omeprazole, calcium and vitamin D
tablets, 6-weekly fat-soluble vitamin (A, D, E, K) and monthly top up folic
acid injections, six-monthly vitamin B12 infusions and daily zinc, vitamin
C, selenium, potassium and magnesium supplement. I also wear a copper bangle
to ward off copper deficiency due to the zinc supplement and as a bonus it
really has helped me with my extraintestinal arthralgia.
*I am on this for life or until I have an intestinal tranplant (I never
thought that I would ever have a narcotic drug problem ;-) Imodium leads to
instant intestinal closure in my case)
I would titrate down the Entocort (aka Budesonide), which I have been on for
the past 3 years once on the Humira. I am somewhat concerned about my bones
because I can't do much moving around and sport is out of the question -
difficult for someone who was used to doing 3-6 hours sport a week.
All the best,
Vanny
"mgbio" <mg...@nospam.net> schrieb im Newsbeitrag
news:4aa003f0$0$10294$607e...@cv.net...
limew...@gmail.com
> Hi,
>
>
> My biggest challenge is that I have mild heart failure with annoying heart
> murmurs (heart stops and then resets itself every 20 sec or so) and Humira
> can exacerbate heart failure. This was caused by having blood sepsis a
> couple of times - first time due to inadequately treated Crohn's, second
> time due to contamination of the central venous catheter for TPN - total
> parenteral nutrition.
>
> Many thanks.
>
> Vanny
Vanny,
I would like to know more about this condition.
My history:
Diagnosed with Crohns in 1998.
3 fistulectomies in 2003-2004
remission 2004-2009
small bowel resection 8 inches, 2009 January,
medicine taking since March 09: 6-mp 75mg/day, VSL-#3, Aloe Vera
I had a small bowel resection in Jan, 2009, where they took out
8inches of my illeum.
I was on TPN for about a week. I was been reasonably normal after the
surgery.
But since the surgery, I have noticed some irregularities in my heart
beatings.
Once in a while, the heart seems to be stopping momentarily.
My questions:
How did you find out that the heart murmur was caused by sepsis during
TPN administration?
What other external side effect did occur due to sepsis?
How did you characterize your abnormal heart rhythm as 'mild heart
failure'?
-lw02
Kofi
> > am
> > aware that Humira is generally given when all other things have failed
> > and I
> > might have to go the Remicade route depending on my doctor.
> >
> > My biggest challenge is that I have mild heart failure with annoying
> > heart
> > murmurs (heart stops and then resets itself every 20 sec or so) and
> > Humira
> > can exacerbate heart failure. This was caused by having blood sepsis a
> > couple of times - first time due to inadequately treated Crohn's,
> > second
> > time due to contamination of the central venous catheter for TPN -
> > total
> > parenteral nutrition.
Low-dose naltrexone should also work for heart failure. You lose opioid
tone. Also, molybdenum-based compounds should work too since you're
losing metallothionein expression. Your Crohn's and heart failure have
major overlapping genetic pathways. Have you ever been on a PPARalpha
agonist or butyrate? Both of those might help.
Kofi
<Vanny...@antispam.com> wrote:
> Thank you everybody for your replies.
>
> If I inject myself with folic acid and don't pay enough attention and
> some
> ends up subcutaneous instead of intramuscular I sometimes end up with a
> red
> strawberry patch on my thigh, but in the meantime my technique has
> improved
> considerably.
My folinic acid is a subQ shot - *not* an intramuscular one. Why would
you be having a reaction when it's subQ? That's really odd.
A high dose (like 10-15mg daily) can stimulate regulatory T-cells and
may have broad application in autoimmune diseases.
Vanny
circumstantial evidence, which has led me to draw that conclusion and I have
gone into the details below.
In October 2003 my GP did a electrocardiogram and got a great print out of
extrasystolic beats (extrasystolic arrhythmias, abnormal heart rhythms,
heart murmurs). She had picked them up just by holding my wrist to check my
pulse as we were talking during the consultation. I had had a bout of food
poisoning or gastric flu in September and that triggered off severe
extrasystolics that were so strong that I felt as though my heart was trying
to leap out of my chest - I am not exagerating here.
(My boss at the time had the habit of banging his fist on the conference
table to make a point and I had to make sure that I didn't have my elbows or
arms on the table because each time he hit the table I felt as though I was
going to have a heart attack as the extrasystolics were exacerbated by the
extremely violent shuddering of the table.
http://www.patient.co.uk/health/Arrhythmias.htm)
My GP then sent me to a cardiologist down the road and I now see him every
3-4 years for check ups. In November 2003 when I went to see him for the
first time he diagnosed mitral valve insufficiency and mild heart failure
NYHA 1 (New York Heart Association class 1 heart failure).
http://www.americanheart.org/presenter.jhtml?identifier=3065080 According to
the cardiologist the mitral valve was most likely damaged due to previous
infective endocarditis (e.g. rheumatic fever due to staph. or strep.
infection).
I was deathly ill with Crohn's in 1992-3 when I was first diagnosed. I had
all the symptoms of endocarditis, which naturally overlap with Crohn's
symptoms - night sweats, fevers, shortness of breath, swelling in belly,
tiredness, etc., and I am convinced that the initial valve damage occured
then. At the time I was put on antibiotic treatment for several months due
to chronic post-operative infection and an open wound. I also had the
remains of an abdominal abscess, which they had not been able to clean out
100% during the operation. In the late 1990s I had detected extrasystolics,
but I thought that I was imagining things and they weren't bothering me - I
just spotted them when I checked my resting pulse one day.
http://www.cardiosmart.org/HeartDisease/CTT.aspx?id=2708
I had the TPN central vein catheter sepsis in early November 2005 - high
fever, chills, chronic migraine-like headaches, malaise, joint pain -
Pseudomonas aeruginosa was grown from my blood and it was a good thing that
I didn't know that it can cause brain abscesses as they sent me for an MRI.
I was diagnosed with with tricuspidal valve insufficiency on ultrasound of
the heart immediately after the sepsis. My last trip to the cardiologist was
around March last year and he further diagnosed me with aortal valve
insufficiency with some artherosclerosis of the heart valves. So my heart is
degenerating (together with the rest of me ) and I suspect that I have had
repeated endocarditis, which has not been picked up by the doctors because I
have been so ill with the Crohn's, chronic hepatis and acute pancreatitis
due to two years of 6-MP treatment, opportunistic infections due to
immunosuppression with said and Entocort, etc. The good news is that my
pulmonic valve was fine at the last look.
http://www.merck.com/mmpe/sec07/ch077/ch077b.html
http://www.endocarditis.org/know/index.html
http://en.wikipedia.org/wiki/Endocarditis
http://wapedia.mobi/en/Infective_endocarditis
I also had an anaphylactic reaction to a blood transfusion in February 2005
post-operative - red/purple skin rash, confusion, malaise and was shipped
back to the intensive care unit from where I had just come from the previous
day. That might have also affected my heart. Anaesthetic can also affect the
heart and it can take some patients months to recover especially the more
overweight.
Despite the worsening of the heart valve situation, according to the NYHA
classification I still only have mild heart failure. My internist was musing
whether or not to refer me in June this year because a 24-hour Holter (ECG)
examination indicated that I was having over 1000 extrasystolics a day, but
there is not much the cardiologist could do except repeat the test and come
up with the same results. In addition to the numerous extrasystolics, I do
have the odd salvo of beats and I had a bout of tachycardia when I was
lounging aroung with my feet up several weeks ago, which I could not
attribute to anything. As I was rolling my old lady's trolley back from the
shops a couple of days ago my heart majorily started skipping beats and I do
have frequent heart pains. The extrasytoles are exacerbated when I lie on my
left side and this is typical with mitral valve problems. This probably
indicates that my heart failure now NYHA class 2, but that is only
speculation until I go to the cardiologist again.
http://www.americanheart.org/presenter.jhtml?identifier=3065080
These extrasystolic beats (extrasystoles) are not regarded as dangerous as
everyone has them to some extent. However, they can indicate that something
is wrong with the heart - as in my case. Athletes very frequently experience
extrasystolics as they push their hearts to the limit.
http://www.patient.co.uk/doctor/Extrasystoles.htm
The only way to ascertain whether the extrasystolics are harmless or whether
they are due to structural changes in the heart is to get a referral to a
cardiologist. As we age the heart muscles get weaker and the greater the
probability that we will experience extrasystole. The best prophylaxis is
plenty of aerobic exercise, a balanced diet and no drugs and not more than 1
(for women) or 2 (for men) units of alcohol per day and a couple of
alcohol-free days each week. Exercise has been shown to improve heart
conditions and some heart patients can get incredibly fit and some have to
be reigned in for doing too much sport after a heart attack.
One of the major causes of endocarditis is bad dental hygiene and this is
critical in the case of IBD patients that are taking immunosuppressives.
A tip: For those that use a mouth irrigator you should always thoroughly
brush and clean the teeth beforehand. Otherwise, the pressure hose effect
will drive bacteria into micro-tears and wounds in the gums and thus into
the blood. Infections in the mouth can quickly lead to endocarditis.
If you think that you have endocarditis or are on chemotherapy/immunotherapy
(Prednisolone, Azathioprine, 6-MP, Methotrexate, etc.) you should avoid
making the gums bleed and discuss the best dental hygiene for you with your
dentist. Unfortunately, it is my experience that the dentists just look at
one strangely because it is not something that they are up on, although it
is part of their training. So, you will probaly be better off doing your own
research beforehand, print a few relevant articles out and taking them with
you to the dentists.
Your best bet is discuss this with your doctor if you have any worsening of
symptoms and to get a cardiologist to look at you. I have included more
references below and refer you also to www.medscape.com and www.webmd.com,
etc.
All the best,
Vanny
Endocarditis and mouth hygiene
http://books.google.de/books?id=QogtVWyyDN0C&printsec=frontcover&dq=Visual+nursing+a+guide+to+diseases,+skills+and+treatments&hl=en#v=onepage&q=&f=false
http://www.endocarditis.org/know/index.html
http://www.cardiosmart.org/HeartDisease/CTT.aspx?id=2708
Peridontal management in patients with heart disease
http://docs.google.com/gview?a=v&q=cache:qDgysp_kOIkJ:www.perio.org/resources-products/pdf/23-Cardiovascular.pdf+Mouth+hygiene+irrigation+devices+heart+failure&hl=en&gl=de
How to look after your teeth
http://www.aarp.org/health/conditions/articles/harvard__dental-health-for-adults-a-guide-to-protecting-your-teeth-and-gums_3.html
Causes of bad breath
http://drkam.wordpress.com/2009/05/24/periodontal-scaling-and-root-planing-gum-treatment/http://www.answers.com/topic/bad-breath-4
<limew...@gmail.com> schrieb im Newsbeitrag
news:a9ab9d7c-2853-40ec...@r24g2000prf.googlegroups.com...