Trying HPI in May

[robray]

I have been pursuing HPI for over three years now and I finally gave
up on getting it done here in Canada, even though it was recently on
the CBC news for c.diff.
It is a bit of a long story, but in 2005 I had a phone consultation
with Dr. Borody. After his consultation I discovered (on the web) that
Dr. Louie in Calgary was treating c. diff. with fecal transplants. For
three years I tried to get Dr. Louie, who was the doctor from the CBC
story, to perform the procedure for my UC, but he finally decided that
he was not able to help me.
I feel very fortunate to be going to the CDD in Australia to have the
procedure done. It was not easy to get the appointment with the CDD,
not to mention it is very costly. Initially they wanted me to fly down
to Syndey just to talk to someone, but since I had a phone
consultation with Dr. Borody in 2005, I was able to speak with someone
and make an appointment.
I am very hopeful that this procedure will be the answer for me. I am
34 and have had UC for 17 years now. I have always had symptoms and
seem to flare up around this time every year. Last year the flare kept
going until now. I am currently taking Dipentum (5ASA) and Entocort
enemas. The fact the my disease appears to be getting more severe
every year makes me very nervous.
I will post the results of my treatment in June after I return.

[Antonio Gutierrez]

Please do keep us informed!

[StarChild]

That's great news, and I'm very happy for you. There's no doubt in my
mind that the good doctors at CDD will be able to help you, and
there's always that chance that the therapy will work wonders and
"cure" you... However, don't go there expecting miracles and you won't
be disappointed. HPI can't cure everyone, but almost everyone feels
significantly better afterwards. Even if you "only" get a few good
years of solid remission out of it I think it's more than worth it,
because there are virtually no side effects to the treatment, and some
patients can cease all other medications for their UC... And sparing
your body from all that poison (because that's what immunosuppresion
is - slow acting poison) is always worth it.

Anyways, good luck and please, keep us posted!

[j]

Good for you. Don't give up.

For lodging, check the Ashfield Motor Inn in Ashfield. The rates
posted may be incorrect, just call them. Ask for a microwave and
fridge in your room.

http://www.ashfieldmotorinn.com.au/

[Scandinavian]

Hi,

I have had distal UC with on and off flares since 2002 and must say
that 100% of the time the flare has started end of winter beginning of
spring. I live in Northern Europe where it is usually dark during the
winter and at this time we actually start seeing the sun. Has any one
else experienced this seasonal start of flares? Northern Europe,
Canada, US these are all Northern hemisphere countries...

Last year it was pretty bad, (worst ever) had a major flare from
February until October. Had a colonoscopy this Monday, no sing of
flares only some scarring from the inflammation. After long time of
thinking about it I opted for AZAMUN last September and it seems it
does the trick for me, without it it would have been "game over". I
have also finally found an excellent gastroenterologist who knows what
he is talking about (close version of the movie character Dr.HOUSE :)...
For patients with UC finding the doctor who actually understands this
disease and its patients is a primary start point for effective
treatment. I have spent a fare share of my time getting treated by
moron doctors who were doing absolutely nothing when I was fine and
when I was ill kept giving the same drug prescriptions from which I
had no use, crap like Asacol and steroids, which actually made me feel
worse to the great surprise of the moron doctors. Some people are
given "licence to kill" when they are awarded with the MD degree.

I wish you the best with HPI hopefully soon some one will have the
final solution for this bastard disease called UC.

[robray]

Thanks for the replies.

If I get even one year of drug free remission I will be extatic. I am
a little nervous about it, but at the same time very excited and
optimistic. I am well aware that it may not work for me, but I have to
try.

During my last visit with my gastro he did mention that it is well
documented that the disease is more active around this time of year.
It has definitely been the case for me.

Thanks for the hotel recommendation. I would really like to get a
hotel or suite with a full kitchen. If there are anymore
recommendations I would really appreciate it. I'd also like to be as
close as possible to the CDD. I have been checking craigslist and
other sites I have found online, but I am not willing to send some
random person a deposit. My plan now is to possibly stay in the hotel
j recommended for a few days or a week and then move to a short term
apartment for the remainder.

BTW I will be there for five weeks. I don't have the itinerary yet,
but the first three weeks involve waiting for tests to complete and
then the last two weeks is the actual procedure.

Fingers crossed!