Can a cold bring on UC flare up?
m...@privacy.net
sinus infection or touch of flu and their UC flaring
up?
Vanny
can quite conceivably cause a flare. There is a school of thought that says
IBD patients should eat an alkaline diet/low acid diet. If you are living
off citrus fruits and/or whiskey and/or cold preparations then I would not
be surprised that your disease has flared.
In addition, you also have to be aware that your disease is present all the
time (even if you are in so-called remission you still have the disease) and
that your body is continually having to cope with it to try and maintain the
status quo. When the immune system is challenged further by such as
infection then the body's defences are deployed to address the infection and
the UC might flare up as a result. Some patients here correlate their flares
with stress. I, personally, have not noticed it with my smouldering Crohn's,
but infection is a form of stress on the body.
Vanny
<m...@privacy.net> schrieb im Newsbeitrag
news:mkr82417cdmtlkdup...@4ax.com...
m...@privacy.net
>A lot of the cough and cold medications have aspirin and other content that
>can quite conceivably cause a flare. There is a school of thought that says
>IBD patients should eat an alkaline diet/low acid diet. If you are living
>off citrus fruits and/or whiskey and/or cold preparations then I would not
>be surprised that your disease has flared.
I was taking Claritin to dry up my runny nose..... any
potential problem there with UC aggravation?
>In addition, you also have to be aware that your disease is present all the
>time (even if you are in so-called remission you still have the disease) and
>that your body is continually having to cope with it to try and maintain the
>status quo. When the immune system is challenged further by such as
>infection then the body's defences are deployed to address the infection and
>the UC might flare up as a result. Some patients here correlate their flares
>with stress. I, personally, have not noticed it with my smouldering Crohn's,
>but infection is a form of stress on the body.
Understand.... thanks!!
Was wondering if that might be the case..... i.e. my
body immune system at high alert due to cold and
thereby attacking intestine as well
m...@privacy.net
>In addition, you also have to be aware that your disease is present all the
>time (even if you are in so-called remission you still have the disease) and
>that your body is continually having to cope with it to try and maintain the
>status quo
is there ANY way to turn this damn disease off!! Any
cure??
I'm so sick of the pain and discomfort!
Vanny
www.rxlist.com
Claritin can cause a plethora of GI problems including diarrhoea
http://www.drugs.com/ppa/loratadine.html
Vanny
<m...@privacy.net> schrieb im Newsbeitrag
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Vanny
However, some patients have had moderate success in managing their disease
with long-term medication and diet.
The SC diet has been cited as helpful by some here
http://www.google.de/search?hl=de&q=sc+diet&meta=
Vanny
<m...@privacy.net> schrieb im Newsbeitrag
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m...@privacy.net
>Only in your dreams!
Well the discomfort and pain are abt to take a toll on
me ..... losing my mind!
I don't feel "well" hardy ever anymore!!
I'm going to go back to doc.... but what are my options
here? Right now I'm only using Canasa suppositories as
needed. They help..... but don't cure!
Vanny
http://www.drugs.com/condition/ulcerative-colitis-active.html This has been
shown to be effective as a maintenance medication (read for the rest of
one's life) to subdue mild to moderate disease in UC patients. For moderate
to severe disease the treatments are the same as for Crohn's disease. It is
assumed here that the disease has progressed to severe when on 5-ASAs, which
have not been effective:
http://www.umm.edu/patiented/articles/what_symptoms_of_crohns_disease_000103_3.htm
If I was in your position I would tell my gastroenterologist (you need a
referral to your GI, don't expect your GP to be able to handle your disease)
that my current treatment was not working, that my quality of life was
miserable, and I would ask him/her what my alternative treatment options
were. Prepare for the appointment by writing down what you want to say, in
the form of a bullet point list to be ticked off once they have been
discussed. He/she should check the blood biochemistry and the inflammation
parameters - ESR (erythrocyte sedimentation rate) and C-reactive protein.
However, there is no guarantee that inflammation will show up in the blood.
If I hadn't had a colonoscopy for a couple of years I would ask my doctor
whether or not it would be advisable to have a colonoscopy to determine the
extent of the disease, i.e. mild, moderate or severe and the exact location.
It is only when you know the extent of the disease that the treatment
options can be determined. For example, if one has predominantly rectal or
descending colon involvement then the treatment with ad hoc Canasa
suppositories will most likely be effective (unless you are a non-responder)
http://www.drugs.com/cdi/canasa-suppositories.html. The 5-ASAs are not
absorbed to any great extent in the bowel, but work topically in the
intestine and should be taken/used all the time.
http://www.google.de/search?hl=de&q=5-ASAs+for+the+treatment+of+ulcerative+colitis&meta=
Certain patients do experience side-effects and this might be addressed by
changing to an alternative 5-ASA.
I would also gently ask if he/she had not prescribed me 5-ASAs and perhaps a
short (6 weeks - titrating down by 5 mg or so each week, for example,
initial daily dose of 30 mg, then 25 mg, 20 mg, 15 mg, 10 mg, 5 mg) course
of Prednisolone to get a handle on the current flare and then keep the
5-ASAs as maintenance to control the UC.
There are some really good publications on the treatment of UC (and Crohn's)
at www.medscape.com , www.webmd.com , e.g.
http://www.webmd.com/search/search_results/default.aspx?query=ulcerative%20colitis&sourceType=undefined
Take some time to read up on the current treatments and prepare some
questions for your GI, make sure that you obtain your final diagnosis and
copies of all your medical reports. A symptom and food diary will probably
help you. If your doctor makes no change to your treatment and/or there is
no improvement in your quality of life, I would suggest that you obtain a
second opinion. Brown bag any medication, herbal remedies or alternative
medicines that you are on and take them with you to discuss with your
doctor. Don't let yourself be rushed through the appointment. Diarrhoea can
be managed to a certain extent by taking Loperamide (aka Imodium) or Lomotil
or Tincture of Opium.
UC patients can end up with inflammation at the terminal ileum as a result
of bacterial overgrowth from the colon, which can result in vitamin mineral
deficiencies. Bacterial overgrowth can be addressed by antibiotic treatment.
http://www.google.de/search?hl=de&as_qdr=all&q=bacterial+overgrowth+and+ulcerative+colitis&meta=lr%3Dlang_en
You are going to have to work at this because your doctor is not going to
come and find you. I reiterate that there is no cure for IBD. We are all
stuck with this. Some consider an ileostomy as a cure for UC, but UC
patients can still experience extraintestinal symptoms, such as arthralgias,
after having had their colons and rectums removed (panproctocolectomy). I
have had an ileostomy for 15 years now (since I was 33 - a year after the
Crohn's diagnosis) and it saved my life, but that is really the only time
one should aspire to such an operation.
Check what you are eating. If you have diarrhoea you should avoid all forms
of sugar, raw fruit and vegetables, with the exception of bananas. Coffee,
chocolate, aniseed, aloe, ginger all exacerbate diarrhoea. Try basing your
diet on the BRAT (banana, rice, apple mousse and toast/black tea) diet and
introduce foods one at a time. Steamed fruit and low fibre vegetables such
as broccoli and cauliflower flowers, carrots, parsnips, etc., should be OK
in small quantities. Avoid all fast foods - high sugar and saturated fats.
Good luck.
Vanny
<m...@privacy.net> schrieb im Newsbeitrag
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Rufus
gaining some comfort. Since I found one that works for me I may not be
completely "irritation free" as I call it, but I am feeling far, far
better as far as my gut goes.
In combination with that, I do watch my diet - no acidic foods like
tomatoes or citrus fruits, and I'm also trying to limit my intake of
sugars though I'll still only eat natural sugars. I'll drink red wine
on occasion, but in general I don't consume much alcohol...though I
haven't really been warned off it in my case. I'm also very particular
about where my water comes from now.
I also find that I HAVE to eat - my diagnosis is "mild" Crohns, you may
find different for yourself, with UC - that's very hard for me because
my habit is to eat only two meals per day, but I NEED to eat three to
maintain my comfort level it seems. I'm also one of the afore-mentioned
people that believes stress management helps.
Discipline is required, once you find what works for you. I'd start as
Vanny suggests.
--
- Rufus
Vanny
going to eat a whole box of dark chocolates washed down by a glass or two of
20 year old Scottish whiskey.
I am on a low acid diet basically for my GERD (gastrointestinal reflux
disease), but there is a school of thought that says that patients with
(auto)immune disease should eat low acid
http://www.google.de/search?hl=de&q=low+acid+diet&meta= I can't find any
studies on this per se and it does seem to be more anecdotal and pushed by
people trying to sell books or dietary supplements. However, GERD is found
in about 25% of the general population and thus also a similar percentage of
the IBD population will most likely end up with GERD and a change in
lifestyle is absolutely imperative for a GERD patient.
http://www.google.de/search?hl=de&q=GERD+lifestyle+changes&meta=
I can't drink because of the GERD (increased stomach acid production), Opium
Tincture (contraindicated) and intestinal malabsorption.
Skipping meals is a stressor and puts the body into flight or fight mode,
which will cause bodily resources to be shifted and a change in metabolism.
5-6 small nutritious (protein, carbohydrate and a modicum of decent fat)
meals a day will be far better than 1 or 2 large meals. I find at work that
I need to snack continuously - grazing - to keep my energy levels up.
Everyone's disease is very different and as such everyone has to follow
their own IBD path. Mine appears to frequently lead into the light of the
operating theatre.
By the way I wrote the last post late at night as the numerous editing
mistakes lay testimony to.
Vanny
"Rufus" <n...@home.com> schrieb im Newsbeitrag
news:VCrWj.162843$yE1.21030@attbi_s21...
m...@privacy.net
>If I was in your position I would tell my gastroenterologist (you need a
>referral to your GI, don't expect your GP to be able to handle your disease)
>that my current treatment was not working, that my quality of life was
Thanks!!
I have printed out your post and intend to do ALL you
advise!!!
I will report back in a few weeks and let everyone know
what I found out
m...@privacy.net
>I would also gently ask if he/she had not prescribed me 5-ASAs and perhaps a
>short (6 weeks - titrating down by 5 mg or so each week, for example,
>initial daily dose of 30 mg, then 25 mg, 20 mg, 15 mg, 10 mg, 5 mg) course
>of Prednisolone to get a handle on the current flare and then keep the
>5-ASAs as maintenance to control the UC.
Yeah I was gonna ask your opinion abt using steroids
for awhile
You advise to do so right?
m...@privacy.net
>I agree with Vanny - a maintenance med, the right one for you, is key to
>gaining some comfort. Since I found one that works for me I may not be
>completely "irritation free" as I call it, but I am feeling far, far
>better as far as my gut goes.
Ok thanks
I want to get feeling better as I'm afraid to travel,
camp out..... enjoy life period
I'm even worried abt holding a job down!
Vanny
doctor about your treatment. However, the six week oral Prednisolone (high
initial dose and then titrating down) was/is still in some circles a
standard initial treatment for IBD, but at the same time the doctors start
the patient on 5-ASAs (future maintenance) and calcium and vitamin D
(prophylactic against osteoporosis - side-effect of steroids). The initial
Prednisolone dose will be calculated according to your weight. I said 30 mg,
but that was my initial dose and I weighed around 50 kg at the time -
actually probably less.
At the end of the six weeks it is frequently the case that the patient needs
to maintain the Prednisolone at a certain level. I have a friend who has
been on 10 mg oral Prednisolone now for well over a year for her UC, after
starting on 40 mg - she is considerably heavier than I. Longterm treatment
with steroids is not advisable, but apart from the 5-ASAs she refuses any
other treatment, i.e. cytostatics.
If the Prednisolone cannot be titrated down without the patient flaring then
a cytostatic, such as Azathioprine (aka Imuran) or 6-MP (aka
6-Mercaptopurine or Purinethol) should be given to the patient. The
cytostatics take up to 6 months to show any effect. As soon as the
cytostatic starts taking effect the Prednisolone should be titrated down to
zero. If the patient still experiences flaring when coming off the
Prednisolone, then a steroid enema/suppository/foam on an initial daily
basis and then titrate down to an as needed basis would be perhaps be the
best option.
My last GP said that if I started new medication I should always start at
the weekend - either Friday evening or Saturday morning depending on the
instructions. I have followed this very wise instruction and it is worth
remembering.
I am on 6-MP and Entocort (plus calcium, etc.) for my Crohn's ileitis and
short bowel syndrome. I have tried to come off the Entocort, but have not
succeeded as yet. I now take 3 mg every second day (3 mg Entocort aka
Budesonide is equivalent to approximately 9 mg Prednisolone). Entocort is
only effective for ileitis and inflammation of the ascending colon, as
usually seen in Crohn's patients. However, there are Entocort enemas
http://www.drugs.com/cons/budesonide-rectal.html and as Entocort is far
gentler on the body and only 10% is absorbed into the blood (compare about
90% for Prednisolone) then Entocort is a better choice, if it is possible to
take it. However, the longterm effects are the same as for Prednisolone - it
just doesn't happen as quickly.
The caveat with the above is that it really does depend on where your
disease is. That is why I think that you need to consider the colonoscopy if
your doctor has not already determined where your disease is located. If
your disease is only located in the rectum (proctitis) and descending colon
(colitis of the descending colon) then you might be able to forego the oral
Prednisolone, but start on a high dose of oral 5-ASAs (maximum for your
weight) and then use daily steroid enemas until the flare is under control.
If none of the above works for you then the next step would be to try a
biologic response modifier, such as Remicade or Humira.
http://www.umm.edu/patiented/articles/what_drug_treatments_inflammatory_bowel_disease_000103_9.htm
Keep pushing for the optimal treatment. I know it is hard work when you are
so ill, but most doctors underestimate the effect of IBD on patients -
certainly those that have ended up with dead patients or patients with half
of their guts missing have. It is also known by the best specialists (i.e.
very few doctors) that the inflammatory parameters are not a good indicator
of disease activity in some patients.
I find that the key for me is to write everything down. It is cathartic and
it really does help with communication with the doctors when you have brain
fog due to dehydration and malnutrition. It also helps you to track your
progress and to realise that there is (usually some) light at the end of the
tunnel.
Good luck.
Vanny
<m...@privacy.net> schrieb im Newsbeitrag
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m...@privacy.net
>Well, as I am only a lowly patient I can only suggest that you talk to your
>doctor about your treatment. However, the six week oral Prednisolone (high
>initial dose and then titrating down) was/is still in some circles a
>standard initial treatment for IBD,
Ok but what mechanism makes steroids so effective for
UC? Just curious...
>My last GP said that if I started new medication I should always start at
>the weekend - either Friday evening or Saturday morning depending on the
>instructions. I have followed this very wise instruction and it is worth
>remembering.
How come?
mgbio
inflammatory diseases, IBD included. While it has been a miracle drug,
it comes at a high cost to long term health.
:) mgbio
m...@privacy.net
>Steroids are a powerful anti-inflammatory drug. It is useful in many
>inflammatory diseases, IBD included. While it has been a miracle drug,
>it comes at a high cost to long term health.
I will Google but in meantime what are the "cost" with
taking oral steroids?
Rufus
Side effects - ranging from temporary neurological and emotional upset
to more permanent damage like osteoporosis and other skeletal and
connective tissue problems. Just think of all of the athletes that have
taken anabolic steroids and paid for it later in life - same class of stuff.
...and the effects aren't always the same for everyone - some here have
the same issues with solumedrol as they do with pred, I myself and one
other gal I know experience serious reactionary side effects on pred but
none with solumedrol. So you're sort of a "medical experiment" when you
go on them and try to find the right one.
My doc actually apologized to me for giving me pred...it's the only drug
that I've ever taken that I've ever asked (begged...) to be taken off
of. If you have to use them, the shorter time on them the better.
--
- Rufus
mgbio
appetite, weight gain, bloating, shifting of fat cells (it has a fancy
name), osteoporosis, cardiac damage, psychosis to name a few. Plus,
your body becomes dependent upon the extra dose and your adrenal glands
shut down. Because of this weaning is a must and can be tricky. Some
people can never wean, leading to the more dangerous side effects.
HTH
:) mgbio
Vanny
not matter. The long-term side-effects of steroids are predictable.
Use the references I have given you to do more research. Side-effects of
medication can be found here: www.drugs.com and www.rxlist.com Not all
patients experience side-effects. It is a very individual thing. Discuss
with your doctor.
If you start new medication at the weekend it gives you a couple of days to
adjust and means that you don't need to take time off work due to drug
reactions.
Vanny
<m...@privacy.net> schrieb im Newsbeitrag
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herutmost
and am allergic to aspirin so could not take the sulfa or 5 ASA drugs
that are so effective for control or remission of this disease. In
recent years I was very sick and again allergic to the alternatives so
was on prednisone tapering down finally to 10 mg daily it is at that
point- due to long term use, not the dose- that I developed the
diabetes. I was on and off prednisone for approximately 2 years prior
to this side effect setting in. This made my already very restricted
diet even more complex, and I had a hard time managing my sugar. I
went off the prednisone after having my colon removed surgically and
the diabetes went away.
Vanny
docs frequently fall back on because it does tend to improve the patient's
short-term well-being more or less immediately.
In 1992 I had an extremely incompetent GI team who treated me with
Prednisolone and Azathioprine and did not realise that I was intolerant to
the latter. I spent a year vomiting my medicines and everything up. They
should have put me on 6-Mercaptopurine immediately after I started having
severe side-effects, but nobody took responsibility and I did not have the
medical literature resources at my finger tips that I have now. Essentially,
with the chronic vomiting, I went untreated for a year and lost my colon a
year after the initial medical diagnosis (although I know that I have had
Crohn's symptoms since I was a child).
Like yourself they started me on the classic high dose Prednisolone and
titrated it down over 6 weeks and it was not possible to come off it. I
think that I was on 10 mg for the best part of that year.
Vanny
"herutmost" <necu...@hotmail.com> schrieb im Newsbeitrag
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m...@privacy.net
I called him up to make an appt to come in and
discussion options for better treatment of my UC (mild
but debilitating nonetheless) as per your advice in
earlier post this week below.
Instead he suggested I start using the Canasa
suppositories daily and implied "for the rest of my
life". I have no qualms abt doing this.... but wanted
to discuss with him some of the suggestions you make
below!
At any rate he sounded in a hurry to get me off the
phone!
Just how important are some of the option you discuss
below such as oral meds and blood markers? My gastro
doc strikes me as being someone who thinks the Canasa
is a cure-all
I admit I have only been taking the Canasa as needed.
have I been making a mistake and should start suing
them nightly before bed regardless if in pain or not?
Bottom line..... am I not properly using the Canasa
suppositories and should view them as something to use
all my life on daily basis here on out?
Vanny
to getting your disease under control. It is definitely worth trying the
Canasa on a daily basis, whether or not it will be for the rest of your life
depends on how effective they are. I don't know why this was not said to you
at the beginning of the treatment.
Pain is not a good indicator of the extent or seriousness of IBD. As a
couple of us have said: you need to be on medication for the rest of your
life. For UC this is a 5-ASA formulation. It is too early to say whether or
not Canasa is the 5-ASA formulation for you because you need to be on it for
a few months on a daily basis. Your doctor obviously has information that
you don't have. I would guess that your disease is mainly confined to the
rectum (proctitis) and the descending (distal) colon, thus the
suppositories. If it was further up the colon then a 5-ASA enema or foam
would be more suitable. I reiterate that you should obtain copies of all of
your medical reports and find out what is going on with you and keep a
personal record of when you had tests, such as colonoscopy, X-Rays, etc.
I suggest that you keep a daily symptom diary to monitor your progress on
the daily Canasa. Include number of BMs per day, blood, pain (pain scale
1-10), etc. Use the Bristol Stool Scale to describe BMs.
http://www.familydoctor.co.uk/htdocs/BOWELS/BOWELS_specimen.html Use bullet
points and keep it non-emotional if you are going to show it to your doctor
(not compulsory, but it could be a good tool to get the treatment you
require - doctors are more persuadable if you use numbers). You could also
try and give each day a score out of 10, using 0.1 decimal places. I,
personally, find that it is better to use a lined notebook rather than
buying a diary because for me there is less stress associated with jotting a
couple of lines down in an informal journal rather than feeling obliged to
complete half a page of a calendar diary.
Something which is very useful is a food and fluid diet for 1-2 weeks prior
to seeing your doctor again
There are plenty of templates and useful references on the internet. Try to
set some time aside to do some research and to go through the suggested
references.
An aim should also be to build up a trusting relationship with your doctor
and make sure that you see him at least every couple of months to keep him
informed about how you are doing. I do know how difficult it is to get the
doctors interested, but don't give up - it is your colon after all and you
don't want to lose it - trust me.
Vanny
<m...@privacy.net> schrieb im Newsbeitrag
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m...@privacy.net
>I think that your doctor has suggested a reasonable treatment in the attempt
>to getting your disease under control. It is definitely worth trying the
>Canasa on a daily basis, whether or not it will be for the rest of your life
>depends on how effective they are. I don't know why this was not said to you
>at the beginning of the treatment.
he may have told me that Vanny but I didn't understand.
I thought I was to use the Canasa until symptoms got
better.... then could quit using them as there are some
side effects to the Canasa as well. However, I have now
started his and your suggestion of using the Canasa
before bed nightly even when I'm NOT having symptoms.
Will give this a go. I just didn't understand that I
could possibly be on Canasa for life!
>Pain is not a good indicator of the extent or seriousness of IBD. As a
>couple of us have said: you need to be on medication for the rest of your
>life. For UC this is a 5-ASA formulation. It is too early to say whether or
>not Canasa is the 5-ASA formulation for you because you need to be on it for
>a few months on a daily basis. Your doctor obviously has information that
>you don't have. I would guess that your disease is mainly confined to the
>rectum (proctitis) and the descending (distal) colon, thus the
>suppositories.
Yes I do think its mainly in my rectum and proctum
altho it been abt 3 years since my last colonoscopy
>would be more suitable. I reiterate that you should obtain copies of all of
>your medical reports and find out what is going on with you and keep a
>personal record of when you had tests, such as colonoscopy, X-Rays, etc.
Good idea on copies of records. I will "try" and get
them. I shouldn't have any problem getting them, should
I?
>I suggest that you keep a daily symptom diary to monitor your progress on
>the daily Canasa. Include number of BMs per day, blood, pain (pain scale
>1-10), etc. Use the Bristol Stool Scale to describe BMs.
Good idea. Will start a log
Thanks for your help and I intend to do all you suggest
and as the doc suggests. I guess I was just not
understanding what is to be done.
Vanny
months and you should see some effect especially if you keep that diary
going. Don't worry if you don't manage to write something each day, but do
try and get in the habit of recording as many symptoms as possible.
There is usually light at the end of the tunnel.
Vanny
<m...@privacy.net> schrieb im Newsbeitrag
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m...@privacy.net
>I really hope that you pick up on the daily medication. Give it a couple of
>months and you should see some effect especially if you keep that diary
>going. Don't worry if you don't manage to write something each day, but do
>try and get in the habit of recording as many symptoms as possible.
>
>There is usually light at the end of the tunnel.
Thanks Vanny!
I will do as you instruct and see what happens.
How much time should I give it before going back to the
doc tho?
Vanny
kick in. Of course, should your symptoms appreciably worsen at any time then
make an appointment to see your doctor as soon as possible. I think that
with the help of your symptom and food diary and your own gut feeling you
will know when it will be necessary to see your doctor.
Whatever, it will be helpful if leave enough time between
appointments/talking to your doctor that you can collate some good symptoms
data and work out which foods cause you problems and present him with some
results for you to discuss. I think that this will help build up trust
between you, he will see that you are being compliant with the given
treatment and be better in a position to suggest further treatment and you
will have more confidence in him/her. If you, for any reason, miss a
treatment, record this and tell him/her. Honesty is really the best policy.
If the current medication should fail then there are plenty of others to try
and the aim should be to increase your quality of life to a level where you
are able to enjoy yourself again. Don't forget that, in most countries, a
patient has a right to a second opinion.
Of course, if he/she is a hopeless case, then get your medical file together
and find another doctor.
Vanny
<m...@privacy.net> schrieb im Newsbeitrag
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