mruk4u

Hi ALL,

I was diagnosed with suffering from Ulcerative Colitis/(UC) at around age 26.
And, I'm now 40 years old. So, that means I've had UC now for over 14+ years
long...and, still ongoing.

The doctors say they're really not too sure what is the exact cause of my UC.
But, I know, myself...that at the time I seem to have contracted the
illness...I was going through one of the most stressful periods of my entire
life (housebound agoraphobia, between ages 26-37 - too afraid to leave the
home, and, go out to face public places...I've overcome my agoraphobia symptoms
now that I'm aged 40...but, not the UC which has been on, and, off, constantly,
ever since it first started at age 26). I personally believe that whenever we
go through especially stressful periods in our lives this can bring out some
really bad illness symptoms deep inside of us...which if not treated, properly,
right away, and, cured...will remain to haunt us, possibly, for all the rest of
our entire lives.

Also, I think, that maybe personality plays a large part in the equation,
too...the way one tends to react/or, over-react to things...I tend to be very
highly strung a lot...; always nervous, with a tendency to panic when the going
gets really tough...also, even during normal everyday life...I do find it
really very hard to really let go, or, completely relax...there is a part of me
that is, forevermore, nervous...afraid of almost
everything(fears/worries/phobias galore). I use both meditation, and, martial
arts training in order to try to cool down, and, become a lot calmer.

Certain things deeply worry me, in particular, about this type of illness...

They told me -(or, I must have read it,. somewhere)-...that if you have UC for
over 10 years...then, there is a possibility that the condition could become
cancerous. And, this is why you are meant to go to your hospital specialist for
regular 6 monthly check ups. In my case, they tend to administer two
tests...one, they put a long tube down your throat. And, in the other they put
a tube up your anus to see into the colon. Damn, I hate having to take those
sorts of highly invasive tests...especially, the **** one/though, the oral one
ain't exactly my idea of having great fun, neither!

I worry, what if cancer does develop inside of my stomach?! Then, what...will
they have to operate. I never had surgeons knives put on me, before. So, I'm
not used to taking any operations. Quite frankly, the whole prospect of
cancer/or, surgery really makes me feel scared.

The other big worry I have is they say that if my UC gets any worse...; and, it
certainly isn't getting any better...as before I used to take drugs only when
the condition was bad...but, now-a-days, I have to take drugs all the time,
non-stop. The drugs I'm currently taking are...


bad...this seems to stop the leaking fastest...but, it's administered on a
temporary, and, decreasing dosage...as taking it long term they say can have
really bad side effects...what is odd here...is that, recently, every time I
stop taking the prednisolone steroids...the illness seems to come back, again,
full force...consequently, I have to go see the doctors to get some more
steroids prescribed, immediately...I worry I'm fast becoming steroid
dependent...with the possibility of suffering side effects from having to take
these drugs, constantly, as well)


tablets every 8 hours...at first, I hated taking these drugs...and, would only
take say 1 tablet every 8 hours...but, now-a-days, I'm taking the full
dosage...and, still the illness seems to keep on coming back...I also worry
about any possible long term side effects in taking mesalazine, regularly)

My fear is that somewhere along the line...the drugs might not work anymore for
me...; then, what?! Will I have to go take an operation...and, have an external
pouch to wear. I'm not atall too sure how I would be able to cope with
that...or, exactly, how depressing it would be?!

To tell you the truth, I hate having to take drugs/and, I hate having to go to
hospital for invasive procedures. Therefore, I'm trying my best to do research
into ways to deal with Ulcerative Colitis...without needing to take drugs, all
the time. And, ways to get the bowels to heal up, properly...so that one day I
can be cured, and, rid of this dreadful illness.

The lifestyle I'm used to living is walking 10/20+ miles. And, running around
the park. And, also, doing martial arts. However, when I'm feeling ill...as,
lately...it's quite impossible for me to get to train, properly, and, live the
active lifestyle which I once did. I am desperate to be well, again. And, I do
believe it is possible. I refuse to give up all hope of a full cure being out
there, somewhere???

My difficulty with choosing new cures, however. Is no 1 I'm unemployed. And, a
lot of these so-called alternative therapists say they can help...ranging
from...diet specialists/relexology/aromatheraphy/yoga/tai chi/chinese
herballists/-etc. But, getting cured by them certainly isn't FREE...; and,
indeed, usually, tends to be pretty expensive. One is, then, left with the ? of
will their cure work or not...or, will I just be throwing away a whole load of
money, right down the drain...as, after all, they don't say if it don't work
you will be able to get your money back! So, for a poor person making such
choices is hard...which to choose/which to avoid? I was wondering if anybody
else out there has tried alternative therapy...if so, which...and, did it work,
or, not?

In regards to diet. I'm not the most well-disciplined of persons. So, I
generally tend to eat/drink absolutely anything. But, not dairy milk...which I
used to drink every day before the UC occurred. Now-a-days, I drink Soya bean
milk, instead. The idea of not eating foods with hot/spice inside of it...and,
just eating plain/bland foods all the time...I find very difficult coming to
terms with. What I tend to do is over eat whatever I fancy...sugar/salt/junk
foods/-etc. ; then, after around 2 or 3 days switch to a more plain/simple
diet...fruit salads/rice/meat/-etc. Though, sometimes, I wonder to
myself...could it really be possible that if I controlled my diet...my illness
would be controlled, too...even to the point where I didn't need to take drugs,
anymore?! I wonder, too, if this is something I'll always be thinking
about...but, never actually able to put into practice due to the lack of
self-discipline factor.

Anyway, basically, I'm writing here to learn more about other peoples
experiences of UC/drugs/-etc....; as they might be able to teach me things
which I didn't already know, yet, by offering me a few tips? Thanks very much
for all of your kind attention.

GOOD LUCK

Bye4now!/BEST wishes, always!/-Paul(UK/London)

PS: Have a NICE day!
;-)

jeff2

Many people report getting either UC or CD after what I call a trigger
event. That is often what may seem like an acute attack such as increased
stress or in some cases an intestinal infection from bad food or other
event. My theory is that many people exist with subliminal symptoms. They
may not be bad enough to cause the illness but then when you add the trigger
event it pushes you past the threshold and you get disease.

One of the problems with intestinal diseases is that many people have bad
dietary habits to begin with. Once you get the disease it is extremely hard
to regain your intestinal health because of the continued habits that have
accrued over the person's lifetime. Lifetime habits are hard to break.
Trying to heal the intestines is like trying to change a tire while the
vehicle is still moving. It can take a lot of changes to regain intestinal
health. Developing better eating habits is crucial. Trying to figure out
what that is is not easy. Most drugs will only either mask the symptoms or
they try to interrupt some biochemical process. This may help the symptoms
but then usually causes bad side effects because the digestive process has
not been restored.

In order to regain health you need to restore the proper functioning of the
intestines. In other words you need to fix the process and make it work the
way it was designed to. Drugs cannot do this. Only by creating a healthy
digestive process and digestive system can you restore yourself and your
intestines to health. It's not an easy thing to do though and I've been
working on this for some time.

I've been a member of this group on and off for over 3 years and from what I
have seen the people who seem to have the best results have made behavioral,
dietary and nutritional changes. Unfortunately science and modern medicine
seem to be behind the reality of what seems to work - especially the
alternative approaches which seek to heal the intestines. Again,
unfortunately, the modern medical or pharmacuetical endeavors are not geared
to testing approaches in which they cannot patent a profitable product so
that limits what they test.

Good nutrition is of the utmost importance. The cells that line the
intestines are constantly being rebuilt by the body. In fact they may have
the highest turnover rate of any cell structure in the entire body. But when
you have IBD the intestinal lining is under constant attack. So again, the
****ogy of the tire changing comes into play.

There are many foods or substances which can exascerbate the intestinal
lining. And there are many foods which can actualy help heal. It is
important to try to identify which is which and try to change your eating
habits to the better.

Antioxidants (vitamins A, C, E) can improve health at the cellular level.
Also nutrient rich foods such as vegetables are important. Fish or fish oil
has been reported to help many people. Things such as coffee, sugar,
chocolate, or acidic foods can aggravate the intestines so they should be
kept to a minimum.

Anyway, there is lots more to be said about diet and nutrition but it's
getting late. I recommend paying attention to what other people say has
helped them. Your findings will vary some, and you need to understand the
condition that the other person has in order to have a better idea of
whether it will apply to your situation. People with CD usually have a more
difficult time with foods then people with UC. That's because of where the
disease is.

I have found that foods make a big difference. I also have UC. And I am my
worst enemy. I know what I should and should not eat but do not always make
good choices either. Since you have to spend money on food anyway, why not
work on that. Exercise is good and also important but taking classes can be
expensive too. You probably already know enough about exercise, just need to
keep motivated. But don't over do that because then it will only be another
source of stress. Stress is when you over work a part of your body. This can
apply to the mind as well. Your brain uses 25% of the oxygen you take in.
Overthinking can take energy away from the digestive process. In Chinese
medicine they say overthinking hurts the spleen. And they attribute much of
the digestive process to the spleen. This is not exactly what the physical
modern understanding of what we now know the spleen does. It is more of an
energetic understandint. In any case the point is to not stress yourself out
over situations. Bad things will happen but you need to learn better ways to
deal with them. We often repeat the same dysfunctional responses to stress.
Again the tire changing ****ogy comes into play. You may want to try taking
a stress reduction class or a meditation class. If you can't afford that
there are some good books on the subject.

OK, 'nuf for now. Take care and hope something I said may help.

Regards,
Jeff 2


load of

work


anybody

work,


milk...which I

bean

it...and,

to

fancy...sugar/salt/junk

illness

drugs,

much

mruk4u

Hi Jeff2,

Just wanted to say, thanks very much indeed for all of that truly wonderful
advice. I do very much appreciate your making the effort. I read everything you
said from start right down to finish...mainly, because, what you say does make
perfectly good sound common sense to me. So, thanks again!

Lately, I've cut myself of drugs, almost, completely. (I'm still taking the
vitamins...folic acit/iron tablets...but, have cut the prednisolone
steroids/mesalazine, competely.) Decided I hate having to take them, anymore. I
mean, I take them, and, yet, I'm still sick! So, what's the point...
Now, I'm trying to work out a way to deal with this problem by taking exercise
(gently as possible)/and, also, am working on controlling my nutrition more.

GOOD LUCK to you in being able to overcome whatever problems you yourself do
have to face.

Bye4now!/BEST wishes, always!/-Paul(UK/London)

PS: Have a NICE day!
;-)

jeff2

Thank you, and you should know not everyone agrees with me, but there are
some who do. And the people who do, do so based on personal experience. And
I'm certainly not saying that what worked for me is going to work for
everyone either. Basically I've had good luck (actually it's been hard work)
with taking a number of nutritional supplements but I still do take some
meds.

Just be careful about quiting all meds completely. That's a very difficult
situation and I would not recommend that until you get rid of all symptoms,
and for some time.

Also, I replied to another person and made a comprehensive list of the
supplements I take. I think it was just yesterday. You might want to look
for that as I believe there is some good additional info.

Let me know if you can't find it and I'll try to forward it to you.

Regards,
Jeff 2

mruk4u

Hi Jeff2, again...

Good to hear from you, as usual.

First, you never told me to stop taking drugs. Instead, the responsibility is
all mine; and, I confess I made up my own mind all by myself. Nor was it an
instant decision I made, neither...; but, one I wanted to make all of the
time...; just merely a matter of when???

Second, right now, I'm congratulating myself on having started this morning...3
days off the strong meds(prednisolone steroids-2 x tablets per day/pentasa
mesalazine-2 x tablets every eight hours).../but, I'm still choosing to take
the vitamins(1 x folic acid tablet/2 x iron tablets). And, it sure feels
tremendously good to me to be off the very strong stuff.

I can't swear that my stomach feels perfectly ok, yet...because, it don't! In
fact, I know, I'm still ill. Like everytime I try to go and eat food...it
pretty soon comes right back out, again...within, at least, 1 hour. That tells
me, my body is still not absorbing nutrition, properly...which is why I think
it prudent to continue with taking vitamin supplements.

To go into a lot of gross details...(which some people might prefer not to
read-therefore, kindly, please skip this paragraph)...I think, I'm going to the
toilet up to 6 times per day. But, then, if I were to cut out all of the junk
food...as well as, overeating huge proportions meant more for 8 instead of for
just 1 person, alone...then, I'm sure, I'd be going to the toilet 3 times, at
most. Of course, when I'm well going to toilet just once, or, twice would be
the norm. On the other hand, when my illness is completely out of
control...going to toilet every 2 hours...12 times per day is what can happen!
And, oh boy, I don't ever want to go back through that kind of endless
suffering ever, again...;instead, I'd much rather take drugs!

I'm having some difficulties controlling my nutrition. For instance, I've been
eating way too much pizza...nearly every single day! And, I've also been taking
too much sugar(ice cream)/-etc. Quite typically, I tend to be absolutely crazy
about spicy foods/salty foods/sugary foods/acid (fizzy) drinks...and, all of
that endless junk food stuff.

However, my tendency is to stuff myself with junk foods/drink, for around a
period of 3 days...; then, that's when I get totally fed up of it all...and, do
an about turn to go the other way...then, I start feeding myself healthy foods,
rice/eggs/salads/mineral water/-etc. I think, I'm reaching the about turn
phrase, now. Decided I've had enough of junk...time to get fit...by doing both
exercise/and, also, eating right, togeather.

I'm hoping that these changes will allow my stomach to heal, and, get better?
But, if not...then, hell, I'll just go back to taking those damn drugs!

However, to me, the experiment of stopping drugs/changing dietary habits...will
always be well worth the effort...; far better to try something...than, to try
doing absolutely nothing, atall...; because -(especially, after reading through
many of this newsgroups messages)- I've decided I wish to play an active role
in dealing with my illness...and, not just be entirely passive...doing exactly
what the doctor says, forevermore...after all, it's my body, and, not theirs.

As to me following anybody elses strict diet...lol...not likely! I feel we all
make up diets purely just to suit ourselves. I know what my own tastes in
food/drink are...and, I do not expect these to be the same as everybody else.
But, I'm very happy to learn about what others eat/drink...and, if I see in
their own reciepie ingredients I myself will like...then, I will try it. But,
mostly, I'm sure, I will just continue taking whatever it is I do most prefer.

I've heard it said...that eating wholemeal bread...provides plenty of
roughage...and, this can help nurse back the colon to health. Too, I've heard
it said that honey helps...I love honey, as it's deliciously sweet...bread &
butter & honey...is a lovely mix to me. And, this is what I call
dieting...having loads of FUN!/LOL

Bye4now!/BEST wishes, always!/-Paul(UK/London)

PS: Have a NICE day!
;-)

mruk4u

Hi,

The doctors told me to take Prenisolone Steroids on a decreasing dosage, as
these drugs are very powerful with possible side effects...8 tablets/6
tablets/4 tablets/2 tablets...changing the dosage every 3 days.../or, a
week...well, when I got down to 2 tablets...that's when I decided to stop. It's
been 3/4 days since I stopped it, now. So, I can quite honestly say I've
experienced no serious side effects, yet?!

I remember the docs used to give me this medical card to carry around with
me...which said, like...URGENT - VERYIMPORTANT that this medication must NOT be
stopped!

But, then, I also read it somewhere...that if you stop it...it won't actually
kill you...but, the worse that might happen is your illness will no longer be
controlled...and, thus, will come back full force.

Well, all I can say is...so far, after being off it 3/4 days in a row...my
illness seems to be fairly controlled...not saying that I'm well, yet...but,
it's certainly not come back full force, anyway.

Bye4now!/BEST wishes, always!/-Paul(UK/London)

PS: Have a NICE day!
;-)

jeff2

Mel echoes my concerns about quitting meds, so I'm glad to hear that you are
aware of the indications and process for coming off of pred/steriods and all
of the other considerations. Also that you are not going into this without
much deliberation.

Also wanted to say that I am very familiar with the tendency to binge on
junk foods. Many people have been fed junk food since childhood and it
certainly has been heavily marketed to us. Food and eating habits become
ingrained early on and it is very difficult to make changes. Even in my last
job they gave away free candy so it was really hard for me to stop.

The trick is to find healthy alternatives which can help satisfy those
cravings. Recently I found some very good products which are distributed
here in the states. They are blends of fruit juices which also contain many
other highly nutritious ingredients. I don't know if any of these types of
products are available where you are but I'll bet something at least similar
may exist.

I particularly like one by a company called Odwalla
(http://www.odwalla.com/) , they have a lot of products but the one I like
best is called Superfood. The Superfood formula contains many high potency
nutritional ingredients including chlorella, spirulina and wheat and barley
grass. I try to stay away from too much citrus because of the acid and this
product does not contain citrus so I don't have any problems with it.

I find these types of drinks very easy to consume. For some reason I buy
fruit but it often goes bad before I eat it so these are a great way to get
the benefits of fruits. Also since I've been using these products my
cravings for junk food have almost disappeared.

Anyway, I'm just trying to give some practical examples. I know how hard it
is to find healthy alternatives.

Take care, and keep us posted. Also you may wish to try to find a physician
who has some experience/interest in the alternative methods. I did so I feel
I am getting the best of both worlds. Or even a good alternative
practitioner (who knows when conventional medicine is indicated0. I think it
is always good to have contact with a professinal health care practitioner
so that you are not going it alone.

Regards,
Jeff 2

joe

this one's a keeper...thanks Jeff

Joe

mruk4u

Hi Jeff2,

Yes, I didn't just suddenly decide to jump off taking Prednisolone Steroids
without already having had some experience of having done so, before...and,
only once I'd reached taking a very low dosage. But, if my dosage had still
been high...then, I would have stayed on it...until when the dosage had come
down to low...otherwise, I wouldn't have thought it safe to come off it, yet???
So, I'm really a very cautious person, indeed...not wholly impulstive, or,
incautious...especially, when it comes to the very important matter of dealing
with saving my one and only health.

I agree with you that the secret to avoiding binging on junk food...is to find
lots of healthy alternatives. Often I prefer to eat excess fruit...such as
green/or, yellow skinned melon...than, say indulge in taking excess
sweets/biscuits/candy! Basically, my strategy there is to go for the more
'natural' food stuffs...as opposed to wholly unnatural.

I'm grateful for the link you sent me about fruit juices. I've both clicked on
it, and, saved it...for future reading up about. In particular it struck my
attention when you mentioned citrus/too much acid. Because, I've found that
whenever I tried drinking fruit juices say every day...I pretty soon had to
stop taking it...as too much acid was upsetting my stomach! Therefore, when you
say that this product you recommend does not contain citrus...yet, is still
very highly nutrious...that certainly sounds very interesting to me, indeed,
well worth checking out further./-Thanks!

The last time I went to my doctor/GP...I mentioned to him that I'd been to see
the alternative therapist chinese herballist doctors...and, they had
recommended that I try taking some herbs...even telling me that their cure
would, in fact, be permanent. -(I really don't know if I should believe that
statement, or, not?! Is it just merely a way to get loads of money out of
me...)- But, my problem was I am unemployed...and, couldn't really afford to
pay for the full course of drugs.

Well, the doctor said I could also get FREE chinese herballist treatment on the
NHS-National Health Service(available here in England)..but, that the waiting
list would be 3 months long. That was around just a few weeks back...so, I'm
still here waiting. Though, I recall the doctor also told me...that I wouldn't
stop taking western drugs...but, instead, I would take both western drugs, and,
chinese herballist medicine in conjunction with one another.

So, yes, I always try to keep in contact with 'professional' doctors...;
searching around on the net is fine for getting this and that -often, layman-
advice...; but, ultimately, I only trust my health to those who really and
truly know because they have been fully trained, and, are therefore properly
qualified. Going things all alone...throwing out professional doctors advice,
totally...would be far too damn scary to me!

On the other hand, I don't like to feel that these doctors do necessarily know
it 'all'. There might still be remedies 'unknown' to them...that will allow my
ulcerative colitis to be completely cured. Something which the hospital
specialist tell me...just isn't possible. Me, I feel I just have to hold out
hope...otherwise, I'd feel utterly hopeless, and, quite possibly, get
depressed...thinking things are just going to get worse and worse! Instead, of
better and better still. I prefer to keep on thinking entirely optimistically.

GOOD LUCK

Bye4now!/BEST wishes, always!/-Paul(UK/London)

PS: Have a NICE day!
;-).

mruk4u

-------
Intro.
-------
Here is what I consider to be a really interesting, and, certainly, one off
type of IM conversation I had recently with a person -claiming to be expert- in
regards to the subject of Ulcerative Colitis/Chrons...
-----------------------------------------------------
Background to the following IM chat conversation...
-----------------------------------------------------
I'd created an AOL chatroom in the US/Life category called: Ulcerative
Colitis...when, suddenly, this person came in there...but, unfortunately, I had
gone away from the screen...when I got back to the computer I immed them in
order to learn more...that is how the following conversation had gotten
started...
-----------------------------------------------------
Our IM text conversation follows, now, below...
-----------------------------------------------------
Screename(hidden): Do you have Ulcerative Colitis?
MrUK4U: yep
MrUK4U: alt.support.crohns-colitis (all) (newsgroup)
Screename(hidden): Are you on Prednisone or Methotrexate?
MrUK4U:
Prednisolone Steroids
Pentasa Mesalazine
Iron Tablets
Folic Acid
MrUK4U: what's Methotrexate?
Screename(hidden): Did you know the Prednisolone can cause osteoporosis of
the trochanter ultimately leading to a hip replacement?
Screename(hidden): Not to mention ulcers.
Screename(hidden): Methotrexate is an immunosuppresant not of the
corticosteroid family.
MrUK4U: I have heard it has side effects...but, not too sure what, though
Screename(hidden): You do realize that ulcerative collitis is an autoimmune
disease.
MrUK4U: Pentasa Mesalazine, is meant to be anti-inflammatory drugs you take
permanently...like every 8 hours the doctor says
MrUK4U: I been reading on this newsgroup just for a few days, now...and, they
did say it's an autoimmune disease...not that I do anywhere near fully
understand whatever the hell that means???

(sorry, my internet connection keeps on dropping, rather unpredictably)
Screename(hidden): That's what the Predinisolone is for.o
Screename(hidden): Your immune system is attacking your intestines.
Screename(hidden): Taking immunosuppressants also increases your chances of
getting opportunistic infections, and in the long run cancer.
Screename(hidden): Mesalazine is like Methotrexate.
Screename(hidden): .
Screename(hidden): It means your immune system has launched antibodies to
attack your intestinal lining.
Screename(hidden): The antibodies in turn attack a host of immune defences,
such as the complement system and T-cells which eat away your intestinal
lining.
MrUK4U: that's really very interesting what you say...and, scary! I did hear
that cancer could be a part of the parcel one day...and, that's why I'm meant
to go see the hospital specialist for regular 3 to 6 montly check ups
Screename(hidden): Your disease is similar to a disease known as Chrohn's
disease. However, ulcerative collitis attacks a different part of the small
intestine.
Screename(hidden): The prednisolone increases your chances of getting cancer
and other infections since it lowers your immune system so it won't attack your
intestines.
Screename(hidden): Kind of like artificially induced AIDS.
MrUK4U: You know, I did something odd, just recently...like during the past
3/4 days...I dumped taking the prenisolone/mesalazine drugs...felt they are
just too strong...and, instead, just am taking the vitamins...folic acid/iron
tablets...hoping I will be able to survive without those stronger drugs
Screename(hidden): That's foolish.
MrUK4U: er, why
MrUK4U: I'm hoping my body will be able to recover from those heavy drugs
Screename(hidden): The vitamins, folic acd, and iron tablets only help your
nutritional deficiency due to the disease.
Screename(hidden): Without the immunosuppressants, your immune system will
continue to ravage your small intestines.
Screename(hidden): How old are you?
MrUK4U: 40
MrUK4U: I had it since 26
MrUK4U: on and off
Screename(hidden): How long have you been taking the prednisolone?
MrUK4U: actually, when the illness first began...it would only last for a few
weeks...then, I would only take the drugs...when I was seriously ill...and,
once recovered...I'd only take vitamins...
MrUK4U: free from serious illness for months/years
MrUK4U: but, now-a-days, the illness seems to be with me a lot more,
regularly
MrUK4U: and, the doctors say I must take drugs all the time
MrUK4U: I hate drugs
MrUK4U: I hate doctors
Screename(hidden): Do you have a moon face?
MrUK4U: and, hospitals, and, invasive procedures
MrUK4U: I'm really not too sure...maybe, baby faced
Screename(hidden): Do you have abdominal striations?
MrUK4U: er, what's that
MrUK4U: see, I am basically an exercise fanatic...I love martial arts
Screename(hidden): Stretch marks.
MrUK4U: for me the problem with this illness is I can't work out, like I used
to
MrUK4U: but, I still work out
MrUK4U: just not when my stomach feels bloated or immediately after meals...I
have to empty my stomach, first
Screename(hidden): That's cause you're nutritionally deficient.
MrUK4U: I don't think I got stretch marks, no
Screename(hidden): It's hard to absorb nutrients when all the villi is gone
from your intestines.
Screename(hidden): What thsi disease does is make your intestines smooth.
MrUK4U: I don't doubt that going to the toilet, and, loosing blood/salts...as
well as, going there, regularly...isn't leaving me nutritionally deficient...
MrUK4U: so, how does one get the villi back
MrUK4U: I heard people say eat natural yougart...with live helpful
bacteria...and, also, eat wholemeal bread for roughage
Screename(hidden): Are your arms and legs thin but you have a beer belly?
Screename(hidden): Prednisolone can also increase your intraocular eye
pressure leading to an increased risk for glaucoma.
Screename(hidden): Those people don't know anything. Listen to your doctor.
Screename(hidden): There is no cure for ulcerative collitis. Only treatment
of the symptoms.
MrUK4U: like I said, I been into martial arts since age 5...and, I'm now
40...I don't drink alcohol/or, take drugs(pot)...I like to keep fit...thus,
having a beer belly is out of the question...but, my stomach does get bloated
after a heavy meal
Screename(hidden): Have you not been taking the prednisolone for an extended
period of time?
MrUK4U: my hips and legs are actually fat...a quirk of my own build..but, my
top half is slim
MrUK4U: I used to take the prednisolone and stop...but, lately, I found that
when I stopped it...the illness would come back full force...so, I had no
choice but to go to the doctors to get prescribed more prednisolone...always
administere on a decreasing dosage...8 tablets/6/4/2...
MrUK4U: I would say I've been taking prednisolone for, at least, a few
months, now...that's why I decided to stop it
MrUK4U: after reading about all the miserable side effects
Screename(hidden): You can't stop it.
MrUK4U: and, they say it can take up to 2 years for the body to fully recover
- or, so, I read some where
MrUK4U: why not?
MrUK4U: I've suffered from Uveyitis(inflammed eye/red eye)...which the eye
doctor said goes hand in hand sometimes with uc...
MrUK4U: say, you seem to know an awful lot about this illness...are you a
doctor...or, a specialist...or, have you suffered from it yourself... or, live
with somebody close who does...how comes you know so much
Screename(hidden): You have to take it for the rest of your life.
Screename(hidden): Long-term use of prednisolone will give most people a moon
face, thin arms and legs, diminished gluteal syndrome, a beer belly and
abdominal striations.
Screename(hidden): Those are only the visible side effects.
Screename(hidden): You will never recover. There are no cures for autoimmune
diseases.
Screename(hidden): Autoimmune diseases are like arthritis or multiple
sclerosis or diabetes.
Screename(hidden): I'm a pathologist.
Screename(hidden): I don't treat patients though.
Screename(hidden): I examine dead ones.
MrUK4U: er, what;'s diminished gluteal syndrome, mean?
MrUK4U: fascinating
Screename(hidden): That means your butt will slowly become smaller and
smaller.
Screename(hidden): Until it is very flat.
MrUK4U: though, I'm not sure I can agree with your no cure idea...I mean,
I've heard that said again and again..but, for me, it's a case of never wishing
to give up
Screename(hidden): At the present, there is no cure.
MrUK4U: nothing, atall...not even alternative remedies?
Screename(hidden): The only cure is a very radical one.
MrUK4U: you mean illeostomy
MrUK4U: and, removing the bowel parts
Screename(hidden): One in which very few patients are willing to go through.
MrUK4U: or,...
Screename(hidden): Yes.
MrUK4U: I was wondering what are your thoughts on my being albe to live
long...if I had this disease since age 26, and, now I'm 40...how much longer do
you think I might have...
Screename(hidden): It would involve a collectomy.
MrUK4U: explain
MrUK4U: what that is
Screename(hidden): You could conceivably live until your 60s or 70s.
MrUK4U: but, in increasing agony, right
Screename(hidden): It is not life-threatening.
MrUK4U: well, sure as hell feels like it
Screename(hidden): That's why you have to take the immunosuppressants.
MrUK4U: weight dropping off, constantly...loosing
blood/weakness/dizziness/-etc.
Screename(hidden): Do you have blood in your stool?
MrUK4U: yes, sometimes, especially, if I have to go out frequently
Screename(hidden): I assume you do since you are taking iron.
MrUK4U: though, the doctors say even if you can't see it...that still doesn't
mean you are not loosing blood
MrUK4U: yes, iron tablets 2 per day
MrUK4U: 300 mg
MrUK4U: and, 1 folic acid 5 mg
Screename(hidden): Depends on which part of the intestine the bleeding is
coming from. If you can't see it, it's occult.
MrUK4U: well, last time I had an endoscopy test...they said my whole colon
was affected
Screename(hidden): Yes, that is usually what they see.
Screename(hidden): It's quite a shocking sight looking through the endoscope.

Screename(hidden): I will let you see a picture.
MrUK4U: sometimes, I worry, that this uc might become chrons which I heard is
even worse affecting the whole entire digestive tract from mouth downwards
MrUK4U: but, then, that could just be purely my negative imagination...and,
uc is all I will ever have to live with...which to me is more than enough
MrUK4U: when lay people look at medical pictures...they are not often
shocked...as they don't understand what they are looking at, anyway
MrUK4U: one has to see a healthy pic...and, then, be able to compare it with
an unhealthy one...to understand
Screename(hidden): Actually, Chrohn's disease doesn't affect the mouth or
stomach.
MrUK4U: ic...
MrUK4U: so, where does it affect
Screename(hidden): It affects the small intestine and/or the large intestine.

MrUK4U: so isn't the intestine the stomach
MrUK4U: you said Chrons don't affect the stomach
Screename(hidden): Do you have rectal bleeding?
MrUK4U: yes, sometimes
Screename(hidden): The stomach isn't the small intestine.
MrUK4U: ah i c
MrUK4U: sorry, to me, I thought the intestines/colon was all part of the
stomach
Screename(hidden): You were fortunate you didn't get this disease as a child.
Otherwise, it could have stunted your growth.
MrUK4U: thank goodness...in fact, I contracted the disease when going through
a particularly difficult incredibly stressful period of my life...basically, I
was so afraid...that the adrenaline would not stop pumping...even when I was
asleep I kept experiencing nightmares...so, it was like constant tension both
day/night...no escape/or, rest...then, I knew something would go...either my
mind/or, my body...I think, in the end both went...I developed housebound
agoraphobia/and, then, later on, uc
Screename(hidden): You have uveitis?
Screename(hidden): Your only option for a cure is colectomy.
Screename(hidden): Have you considered this option?
Screename(hidden): With a colectomy, you don't have to worry about colorectal
cancer.
MrUK4U: as an exercise fanatic I didn't believe the doctors when they told me
the illness was permanent...and, might even grow steadily worse...but, it just
kept on coming back with increasing frequency...so, everything they said was
right
Screename(hidden): With a colectomy, your risk of colorectal cancer would be
reduced to zero.
Screename(hidden): I guess you could wait until pre-cancerous changes are
picked up with screening endoscopic biopsies before deciding.
Screename(hidden): It will get worse.
MrUK4U: yes, I've had uveitis/why do you ask that? And, what does colectomy
mean?
Screename(hidden): Like multiple sclerosis or arthritis.
MrUK4U: I have uveitis on and off
Screename(hidden): That means complete removal of your large intestine.
MrUK4U: so, you think I should hurry up, and, get the op done
MrUK4U: I read it...that nobody should be in a hurry to get the op
done...only as a last resort
MrUK4U: when nothing else ain't working
Screename(hidden): I understand you are in the UK. Such surgery is covered
under the National Health Service.
Screename(hidden): You probably should wait until they see pre-cancerous
growth.
Screename(hidden): That might occur ten years from now.
Screename(hidden): It's indicated when there's precancerous growth or when
you have toxic megacolon.
MrUK4U: the big C/for Cancer...God, I hate that word!
MrUK4U: it's scary as death is
Screename(hidden): You have to die somehow. It's either heart disease or
cancer.
MrUK4U: what is toxic megacolon
Screename(hidden): That's a very serious condition when your colon is very
dilated.
MrUK4U: yes, here in UK being unemployed my hospital treatment is under the
NHS...and, there are long waiting lists
MrUK4U: for things like endoscopys
Screename(hidden): Mostly resulting from Chrohn's or UC.
MrUK4U: hmm...I hope I don't get that, then
Screename(hidden): Do you have rectal bleeding?
MrUK4U: you know, you are one really scare person to talk to...as well as,
being very highly informative...you told me more that many who I've ever spoken
with
MrUK4U: yes, occassionally
MrUK4U: especially, when I'm going to the toilet, frequently
Screename(hidden): So there are private hospitals in the UK for the rich?
MrUK4U: sure
MrUK4U: if you can afford it...you can avoid the waiting lists
Screename(hidden): I may be blunt but I reveal only the facts, holding
nothing back.
MrUK4U: I'm meant to have a endoscopy...but, they said I have to wait 4
months!
MrUK4U: it's ok, I appreciate everything you say
Screename(hidden): An informed patient is the best patient.
MrUK4U: the scary part is like when you say there is no cure/and, it will get
worse
MrUK4U: makes me really think
Screename(hidden): I probably revealed many things to you that your general
practiitoner didn't want you to know.
MrUK4U: and, I'd much prefer to live in dreamland, sometimes, thinking there
will be a cure
MrUK4U: well, actually, I read similiar somewhere on the net/or, inside of
books/-etc. But, not usually coming from just one single source of info.
Screename(hidden): There could be a cure 30 years from now, but at present
the treatment is only palliative.
MrUK4U: yea, I hate having to take drugs, forevermore
MrUK4U: with side effects
MrUK4U: added on, too
Screename(hidden): Just take your prednisolone and you should be fine.
Screename(hidden): People with organ transplants have to take that drug too.
Screename(hidden): But many people take that kind of drug, especially those
who have transplanted organs.
MrUK4U: see, I ws the type of guy who always hated taking drugs...including
pot/vitamins...preferring to just eat food/drink, naturally...and, now, it's
like I'm practically a drug dependent addict...who can't live withotu
drugs...how utterly ironic
Screename(hidden): Many people with rheumatoid arthritis take that drug, too.

MrUK4U: I wonder, when you have the op...doesn't that involve more
complications
Screename(hidden): That's not the same kind of drug as hallucinogens.
Screename(hidden): All types of surgery have risks.
Screename(hidden): Mostly from the anesthesia and possible infection.
Screename(hidden): Do you have rectal bleeding?
MrUK4U: yes, but, I heard even if the surgery is successful...people can
still have part of the disease come back...and, so on...like the surgery can
lead to it's own types of illnesses...
MrUK4U: you keep on asking me, repeatedly, if I have rectal bleeding...I keep
on answering you, yes...sometimes, whenever I have to go to the toilet,
frequently...meaning whenever the stomach is most inflammed.
Screename(hidden): Well, the hope for the surgery is a cure. Nothing is
100%.
MrUK4U: But, why do you keep on asking me that ?
Screename(hidden): You have uveitis because it's connected to your ulcerative
collitis. Both are autoimmune diseases and connective tissue diseases.
Screename(hidden): You have uveitis because it's connected to your ulcerative
collitis. Both are autoimmune diseases and connective tissue diseases.
Screename(hidden): You have antibodies attacking both your colon and your
uveal tract.
Screename(hidden): So you see why you have to take your immunosuppressants.
MrUK4U: hmm
Screename(hidden): What did your doctor give you for your uveitis?
MrUK4U: oh, then, I went to see the hospital eye specialists opticians
MrUK4U: they gave me drops
MrUK4U: forgot what the drops were called
Screename(hidden): Those drops were steroids.
MrUK4U: but, it worked cleared things up...cleared up the red eye...told me I
must take the whole course...or, otherwise, it would just flare up, again
Screename(hidden): Subconjunctival steroids.
MrUK4U: and, what do those do...
MrUK4U: are there side effects there, too
MrUK4U: (sorry, my internet connection keeps on getting dropped/have to
reconnect)
Screename(hidden): Those steroids are anti-inflammatory.
Screename(hidden): They suppressed the antibodies attacking your uveal tract.

Screename(hidden): What do you mean?
MrUK4U: well, my AOL 8.0 UK version keeps on saying...reconnecting...
Screename(hidden): So in the UK if you are rich you can have surgeries and
procedures done without waiting?
MrUK4U: I should think so...if the doctor recommends it
Screename(hidden): But would you have to pay for it out of your own pocket?
MrUK4U: if you are a 'private' patient you would have to pay for it...unless
you were insured, and, the appropriate condition was already covered by your
insurance...
Screename(hidden): Do the vast majority of patients in the UK use the NHS?
MrUK4U: yes, most
MrUK4U: as many are unemployed...millions
Screename(hidden): Your disease is quite advanced since you have abdominal
pain.
Screename(hidden): You might really want to consider a proctocolectomy.
Screename(hidden): Abdominal pain is mainly present with severe disease.
MrUK4U: proctocolectomy?
MrUK4U: another op you are recommending
MrUK4U: let me tell you this much, I hate the idea of both drugs/surgeons
knives working on me
MrUK4U: in fact, I'm practically phobic about it all
Screename(hidden): That just means resection of your complete colon.
Screename(hidden): That completely eliminates your risk of cancer.
MrUK4U: so, yes, I'm willing to listen...but, I'm sure in no partiuclar hurry
to go get myself operated on
MrUK4U: as I see it, I'm just merely intersted in seeing anothers point of
view
Screename(hidden): After the surgery, just maintain proper nutrition and you
should live until your 70s or even 80s.
MrUK4U: what does resection mean
MrUK4U: they give you a bag to go shit in
Screename(hidden): No, you don't need to do it now. But you should really
consider it once the precancerous growths start showing up.
Screename(hidden): No, what they do is they use your small intestine and you
defecate out of that instead.
Screename(hidden): You would no longer have a large intestine.
Screename(hidden): A proctocolectomy can be life-saving.
MrUK4U: explain deficating out of the small intestine
MrUK4U: does that mean you need to grow a new anus
MrUK4U: somewhere?
Screename(hidden): lol...An anus is just an opening.
Screename(hidden): They would just hook up the small intestine to your anus.
Screename(hidden): No need to defecate into a bag.
Screename(hidden): But you would probably have to defecate quite frequently,
especially after meals.
Screename(hidden): Since you would no longer have a rectum.
Screename(hidden): So you also wouldn't have to worry about rectal bleeding
anymore.
Screename(hidden): You might find yourself defecating as much as ten times a
day.
Screename(hidden): As frequently as you urinate.
MrUK4U: damn, none of these solutions you are offering me sound like FUN!
Screename(hidden): You will probably have to consider a colectomy later in
life. It is inevitable if you want to extend your life.
MrUK4U: having to go to toilet, frequently, sounds like the same old story
Screename(hidden): But at least you won't have ulcerative collitis anymore.
Screename(hidden): Or the risk of cancer.
MrUK4U: all I can say is, I'm thinking about it...
Screename(hidden): You would be disease-free.
MrUK4U: by the way, I hope you don't mind...but, I intend to save this
conversation in order to read, later
Screename(hidden): If you don't take your prednisolone and mesalamine, you're
going to be thinking about that even more quickly than you thought.
MrUK4U: really, so I gotta take em
MrUK4U: no other choice
MrUK4U: like stopping taking them won't reverse any serious side effects
MrUK4U: or, stop the colitis
Screename(hidden): those are the only things keeping your disease in check
Screename(hidden): without those, your disease will progress unchecked and go
out of control
Screename(hidden): and you'll soon have to consider removal of your colon
Screename(hidden): and defecating 10 times a day
MrUK4U: 12 times, actually, waking up every 2 hours...can't get any proper
sleep...
Screename(hidden): Why do you not want to take those drugs? Is it because
the drugs are very expensive?
MrUK4U: no, it's FREE on NHS
MrUK4U: I told you I'm drug PHOBIC
Screename(hidden): You won't really defecate as long as you don't eat
anything before you go to bed.
MrUK4U: I'm doctor PHOBIC
MrUK4U: a lot of times I miss hospital appointments, deliberately
Screename(hidden): You only defecate after you eat.
MrUK4U: as I'm too scared to go there...what will be the results...what more
drugs will they wish to push into my system
Screename(hidden): mesalamine is just aspirin you know
Screename(hidden): a very powerful aspirin
MrUK4U: really
Screename(hidden): Next time you visit your doctor ask for this drug:
azathioprine
MrUK4U: what's that
Screename(hidden): It's for treating UC. Ask him about it.
MrUK4U: I just wanna say in case my connection gets permanently
disrupted...thanks a lot for you helpful advice
MrUK4U: and, I've noted down every single word of this conversation so I can
get to re-read it over, again and again...as well as, added your name into my
Buddy Lists.
Screename(hidden): I like informing patients of their conditions.
Screename(hidden): Does anyone else in your family have UC?
MrUK4U: not that I'm aware of...but, I think, one cousin has some sort of
bowel complaint...IBD, most probably
MrUK4U: but, I do remember on the other hand...2 of my aunts died of stomach
cancer
MrUK4U: both were aged around age 70+..
Screename(hidden): A lot of the information you learned today may be shocking
and disturbing at first, but over time you will come to accept it and better
understand your disease.
Screename(hidden): You will understand why it's important that you take the
prednisolone and mesalamine for the rest of your life or until you get the
colectomy.
MrUK4U: no, nowhere near as shocked as you might think...I'd heard the
disease can become cancerous...I'd heard of illeostomy...I'd heard of stomach
resectioning...I'd heard of alternative drugs.../-etc. But, just never from one
same source...you pick things up all over the internet...and, even see
pics...before/after/-etc.
Screename(hidden): It will become cancerous. That's a given. The question
is when.
MrUK4U: again, scary
Screename(hidden): When precancerous growths appear, you will have to get a
colectomy. If you don't, it may progress to full-blown cancer, even
metastasizing to other parts of the body like the brain or lung.
Screename(hidden): By then, it will be too late.
Screename(hidden): That's why your doctor suggested that your colon be
examined so frequently.
Screename(hidden): So he can catch any growths in the early stages.
MrUK4U: dang
MrUK4U: scary as hell
MrUK4U: I tell you, ever since I first heard the condition could become
cancerious...I tried my damndest not to even think about that possibility...as
it's far too scary! Incurable cancer! I've seen both my aunts die from
it...and, also, a friend...they go down so fast...and, it's like nothing can
help them recover.
MrUK4U: looks like I'm going to have to reboot this stinkin machine...in the
hope my connection will be firmer next time...anyway, I've saved you to Buddy
Lists...so, we will be able to talk again, anytime...and, thanks very much for
the chat...but, if you can wait, then, I'll be right back...
-----------------------------------------------------
FOOTNOTE: All of the above IM chat conversation is reprinted here in it's full
entirety...with nothing censored. But, because, I hadn't asked the person who I
spoke to for permission to publish the chat text here...therefore, I
decided-purely in order to protect their privacy- to carefully hide their
screenname. So, in places where you should have seen their screenname being


Screename(hidden):
-----------------------------------------------------