Comment by User johnfrommelbourne on Tue 7 Jul 2009 - 11:58 am UTC:

Thanks Bryan, very much appreciated.

  I need to understand better my daughter's condition and likely
prognosis,based on available information and any examples known.

 I had somewhat of a rough time just four years or so back when in the 
very same week my 17 year old daughter and 37 year old wife both  were
diagnosed with very serious conditions/ diseases. My daughter with Crohns
Disease, (a nasty intestinal/ bowel disease) and my wife with Breast
Cancer.

In due course my daughter's condition deteriorated after a long hospital
stay, two stints in intensive care and septicemia setting in.Conversely my
wife's condition improved,according to doctor's opinion. Best advice was
that I should prepare myself for the worst in regards daughter but  a slow
recovery for wife. In reality the opposite occurred and I lost my wife last
year while my daughter recovered dramatically, even eventually losing the
need for her colostomy bag after 7 months of wearing it constantly.

Still I am always wary of what the future holds for my daughter S. 
Although she appears in very good health now with few signs of the disease
other than an inability to gain weight past 51 kilos( up from the 37 kilos
she sank too but below her healthy 60 kilo optimum), I cannot forget  one
particular doctor's  view that the disease can seemingly go away but in
fact lays dormant for 3 to 5 years before  reigniting with an even greater
intensity.

 My daughter has now been in good health for over two years and would seem
to have made a remarkable recovery with almost no conditions that are of
any real concern.

 What I need to know is as follows-:

 In the past the disease was considered lifelong with individuals enduring
varying degrees of various symptoms from making only minor improvement but
always  remaining sickly/well underweight, weak and unable to eat properly
through to the best scenario of stabilizing at minor symptoms where one 
just has to watch what they eat lest they become sick and vomit
occasionally, but otherwise live quite comfortably.

 Can I allow myself to believe that S who eats everything (even against
doctor's advice) can apparently come through with virtually no long term
affects or problems at all!!  

 Because this is how it appears currently, ie she has almost forgotten she
had the disease her condition is so good and she suffers nought from any
symptoms, that we can detect at least??

  Is there plenty of other cases documented where people have made such a
lasting/ long term recovery that has been virtually symptom free years
after the initial onset of disease, OR is this the calm before the storm
and as suggested by doctor we should prepare for another likely bout of the
disease in the months or years ahead. 


 John From Melbourne

Comment by User johnfrommelbourne on Tue 7 Jul 2009 - 12:12 pm UTC:

Bryan Of Hove John Of Melbourne really does appreciate you allowing me to
use your space for my  health query. Of course at some later time in one
fashion or another I will repay this small debt, perhaps in person on my
next visit to Mother England. My next visit being my first but I am sure I
will make it one day. A long long way unfortunately but I must see the
history and landscape at least once in my lifetime.

Comment by probo on Tue 7 Jul 2009 - 12:30 pm UTC:

Hi John

I am so sorry to hear your news but I'm so pleased that I have provided you
with the opportunity to ask a question in this way.

I suspect that Byrd or Hummer might now rise to the challenge even though
the $10 price tag is so paltry, although this can be easily addressed
through another question, if necessary.

Let's hope that someone now puts up his or her hand.

All the Best

Bryan

Comment by User myoarin on Tue 7 Jul 2009 - 1:19 pm UTC:

Greeting to you both.

Personally, I would prefer only to see wonderfully hopeful information for
S's future. 

Maybe John would like to take this question "private."  If so, I'll gladly
subsidize the new price.  Bryan and I can meet elsewhere to settle that.

All the best, especially to S and John,  Myo

Comment by probo on Tue 7 Jul 2009 - 1:55 pm UTC:

Nice thought, Myo, but if it's 'private' then only the Questioner and the
Researchers can see it.

No use to John until he gets his Credit Card sorted UNLESS ...

He's also got a Debit Card?

What type of credit or debit cards can I use with PayPal? 

PayPal accepts the following cards: 
Visa / Delta / Electron 
Mastercard / Eurocard 
PayPal Credit Card 
PayPal Top Up Card 
Switch / Maestro 
Solo 
American Express

Bryan

Comment by Researcher admin on Tue 7 Jul 2009 - 2:28 pm UTC:

John, we will be happy to take this question private without further
payment or formality if you request it. Either way, we changed your
daughter's name to "S" for her privacy.

Best Regards,
Uclue Customer Care

Comment by User johnfrommelbourne on Wed 8 Jul 2009 - 4:21 am UTC:

Thankyou all for your consideration, much appreciated,  and especially
Admin people. No thats OK, as Bryan once said I am  fairly private here
anyway being one of very few subscribers in Australia. And there is no
secrets between my daughter and I so no problems there.

 For whats it worth by the way my daughter is of an Indian mother, of
southern Indian origin. The only relevance  being that Crohn's disease is 
an uncommon ailment amongst Asians generally, being far more prevalent
amongst Anglo/Celtic or European races, (for reasons that are yet to be
understood).

 John From Melbourne

Comment by probo on Wed 8 Jul 2009 - 5:40 am UTC:

Sorry, John, but no Researcher has yet picked up the baton.

Consequently, Little Me (a non-researcher with absolutely no medical
training) has stepped up to start the ball rolling.

Please note this Comment is absolutely FREE which may be more than it's
worth.

I knew nothing about Crohn's prior to today but my 'research' (based mainly
on Wiki) shows the following:

Symptoms

People with Crohn's disease will go through periods of flare-ups and
remission.

Environmental factors

Diet is believed to be linked to its higher prevalence in industrialized
parts of the world. Smoking has been shown to increase the risk of the
return of active disease, or "flares".[36] The introduction of hormonal
contraception in the United States in the 1960s is linked with a dramatic
increase in the incidence rate of Crohn's disease. Although a causal
linkage has not been effectively shown, there remain fears that these drugs
work on the digestive system in similar ways to smoking.[37]

Diagnosis

The diagnosis of Crohn's disease can sometimes be challenging,

Treatment 

Currently there is no cure for Crohn's disease and remission may not be
possible or prolonged if achieved.[77] In cases where remission is
possible, relapse can be prevented and symptoms controlled with medication,
lifestyle changes and in some cases, surgery. Adequately controlled,
Crohn's disease may not significantly restrict daily living.[78] Treatment
for Crohn's disease is only when symptoms are active and involve first
treating the acute problem, then maintaining remission.

Lifestyle changes

Certain lifestyle changes can reduce symptoms, including dietary
adjustments, proper hydration and smoking cessation. Eating small meals
frequently instead of big meals may also help with a low appetite. To
manage symptoms have a balanced diet with proper portion control. Fatigue
can be helped with regular exercise, a healthy diet and enough sleep. A
food diary may help with identifying foods that trigger symptoms. Some
patients should follow a low fiber diet to control symptoms especially if
fiberous foods cause symptoms.[78]

Prospective treatments

Researchers at University College London have questioned the wisdom of
suppressing the immune system in Crohn's, as the problem may be an
under-active rather than an over-active immune system: their study found
that Crohn's patients showed an abnormally low response to an introduced
infection, marked by a poor flow of blood to the wound, and the response
improved when the patients were given sildenafil.[87]
Recent studies using helminthic therapy or hookworms to treat Crohn's
Disease and other (non-viral) auto-immune diseases seem to yield promising
results.[88]

Complementary and alternative medicine

More than half of Crohn's disease sufferers have tried complementary or
alternative therapy.[89] These include diets, probiotics, fish oil and
other herbal and nutritional supplements. The benefit of these medications
is uncertain.

•	Acupuncture is used to treat inflammatory bowel disease in China, and
is being used more frequently in Western society.[90] There is evidence
that acupuncture has benefits beyond the placebo effect, improving quality
of life, general well-being and a small decrease in blood-bound
inflammatory markers.[90] 

•	Methotrexate is a folate anti-metabolite drug which is also used for
chemotherapy. It is useful in maintenance of remission for those no longer
taking corticosteroids.[91] 

•	Metronidazole and ciprofloxacin are antibiotics which are used to treat
Crohn's that have colonic or perianal involvement, although this use has
not been approved by the Food and Drug Administration.[92] They are also
used for treatment of complications, including abscesses and other
infections accompanying Crohn's disease.[7] 

•	Thalidomide has shown response in reversing endoscopic evidence of
disease.[93] 

•	Cannabis may be used to treat Crohn's Disease with its
anti-inflammatory properties. Cannabis and cannabis-derived drugs may also
help to heal the gut lining.[94] 

Prognosis

Crohn's disease is a chronic condition for which there is currently no
cure. It is characterised by periods of improvement followed by episodes
when symptoms flare up. With treatment, most people achieve a healthy
height and weight, and the mortality rate for the disease is relatively
low. However, Crohn's disease is associated with an increased risk of small
bowel and colorectal carcinoma, including bowel cancer.[95]

My Conclusions

Your daughter is probably now in a period of remission and Crohn's could
flare up again although changes in her lifestyle could be beneficial.

I've probably not told you anything that you didn't know before but it
seems to me that it can be 'managed'.

I shall now be interested to see if any other Uclueans can contribute.

All the Best

Bryan

http://en.wikipedia.org/wiki/Crohn's_disease

Comment by Researcher pinkfreud on Wed 8 Jul 2009 - 7:54 pm UTC:

John,

I was diagnosed with Crohn's Disease. I had my entire colon removed, and
the doctor said that I could expect to live 5 to 7 years. 

That was 37 years ago. The doctor is dead, but I'm still here.

Comment by User myoarin on Wed 8 Jul 2009 - 8:31 pm UTC:

Comment by User johnfrommelbourne on Fri 10 Jul 2009 - 1:52 am UTC:

Thanks Bryan, that will help and given small fee , not my money etc I can
understand no  quick response.

 I am happy with that so wil leave this question and consider it complete,
thanks again.

 john From Melbourne

Comment by probo on Fri 10 Jul 2009 - 5:14 am UTC:

Thanks, John, 

However, I will leave the question open until it expires just in case ....

A: A Real Researcher appears from out of the Blue; OR

B: Myoarin remembers what he was about to say when he almost left you a
message.

It's not at all like Myoarin to be so terse with his Comments and I have
this mental image of him sitting on his yacht, tapping away at his laptop,
when a huge whale surfaces and takes him home for dinner.

Or maybe it was a mermaid?

Or his friend Orpheus?

Bryan from Hove

Comment by User johnfrommelbourne on Fri 10 Jul 2009 - 8:17 am UTC:

Yes ok Bryan. Sounds good. Remember to watch the cricket scores also.

 Thanks again, And thanks to the Pink One for sharing briefly her
experience with Crohns Disease. It must have been tough for her also

 JFM

Comment by User myoarin on Fri 10 Jul 2009 - 9:02 am UTC:

Arabic saying from German Wikipedia:
"Wenn Du redest, muss Deine Rede besser sein, als es Dein Schweigen gewesen
wäre."

When you speak, your words must be better than your silence would have
been.

I was looking for another Arabic saying I heard recently, to the effect:  
Before you speak, ask yourself if it is true, tactful, and necessary.

Which one should do in the course of still a third one:  
Allah, give me the neck of a camel that I may chew and chew and rechew my
words before I speak.

So  - for once -  I didn't post what I had had in mind.

But I will say now that I do hope that medical science has found less
drastic ways of treating Crohn's Disease.

And, Bryan, my only yacht is a model of a sloop Dad made for my 5th
birthday, when the masthead almost reached my chin.

Regards to all, especially Pinkie,  Myo

Comment by User steph on Mon 13 Jul 2009 - 1:32 am UTC:

Although I don't make many comments here these days, I just want to say
that Bryan is a wondeful, generous and caring gentleman. You rock, Byan :)

And johnfrommelbourne, may I offer my sincere condolences on the loss of
your wife and hope that your daughter lives a happy and long life.

Carmen

Comment by User johnfrommelbourne on Mon 13 Jul 2009 - 12:35 pm UTC:

Thankyou very much Byrd and Steph for your thoughts and sympathy. very much
appreciated. I sense similar themes from Probo and MOI also of course. Also
much appreciated.

 I think what I have in front of me is fine to run with at the moment and
in fact I am very happy with it Byrd and understand you have your own 
business and  daily issues to deal with at this current time also.

  My wife is sadly missed as you can imagine. I met her in early 90's when
she was doing her  Master's degree  at Swinburne uni in Melbourne. We were
in same class. She was very healthy young Indonesian woman when we met,
when she was in her late 20's and was so right up until 10 years later when
she was diagnosed with Breast cancer. 

 JFM

Comment by User johnfrommelbourne on Mon 13 Jul 2009 - 4:50 pm UTC:

Just by the way and just in case such info is of benefit to anyone I was
able to prolong my wife's life and also reduce her pain dramatically by
taking her to the Fuda cancer Hospital in China that caters only to cancer
sufferers in advanced stages of the disease.  I am convinced that had I got
her to this particular hospital earlier they may have been able to save
her.
 
Without going into detail by the time I got my wife to the cancer hospital
the cancer had spread to her liver her lungs and her  back. She was so weak
I had my doubts she would make the plane trip to China.

 On arrival and for next two days she was in great pain. However after
undergoing treatment not recognized in the west she awoke almost pain free
and in the best spirits she had been in for a long time. She maintained
only minor pain for a good period which allowed us to plan the future ahead
calm and rationally together. The tumors on her chest were reduced in size
at Fuda also which I am sure gave her a another few months of life.

 Unfortunately she had cancer all through her body and eventually she
succumbed, but always I will be grateful  for what the amazing doctors at
Fuda did for my wife to give her a little extra time  with only minor
discomfort.