Negative to all of the chem marker indications, as of my blood work
about a month ago...but yes, I agree that I'm still "smoldering" to some
extent.
But probably not as bad as it sounds - I'm regular, and I'm not even
having diarrhea at present. I get the urge to go, but no more than
twice per day, and generally within about a half hour after I
eat...particularly if I eat a large meal. The discomfort I feel is very
minimal...just enough to remind me I have an issue, which is why I won't
call it "remission". I think I did have a brief "remission" last
August...lasted about two months, as I'd call it.
I also agree that fatigue goes with the disease, but I've also verified
my sleep issues by spending a night in the sleep lab...I just plain
don't go into deep sleep, and that was worse when I was taking Asacol.
My worst time is in the early part of the morning, I do and feel pretty
good from about 9 am to midnight.
I think my doc's advice to monitor on my present course is prudent -
also because of where I live I have to make about a 300 mile round trip
to actually obtain quality care...I may end up having to do something
about that one day...
--
- Rufus
Vanny wrote:
> Well, good but mixed news. The CF might well be associated with the
> medication, but as you still have discomfort, this indicates that the
> Crohn's is still smouldering and active Crohn's is a cause of CF. I was
> fighting through my days years prior to my diagnosis.
>
> While you still have symptoms wouldn't it be worth considering longterm
> Azathioprine (aka Imuran) or 6-Mercaptopurine - generally 4 years?
>
> Smouldering Crohn's can do a lot of damage - I am living proof of that
and
> the 5-ASAs have limited efficacy in Crohn's disease, depending on the
> patient. They seem to be helping you, but I would argue that you are
still
> not receiving optimal therapy given that you still have moderate
symptoms.
> Severe fatigue counts as moderate Crohn's in my books and blood and pain
are
> not prerequisites in CD.
>
> Do you have raised inflammatory parameters - CRP (C-reactive protein),
ESR
> (erythrocyte sedimentation rate), urinary-TNF alpha, etc?
>
> Vanny
>
>
>
> "Rufus" <not@[EMAIL PROTECTED]
> schrieb im Newsbeitrag
> news:31j8k.170458$TT4.72907@[EMAIL PROTECTED]
>> Went to see my gastro at UCLA yesterday for a three month follow up on
my
>> last scope/biopsy procedure. I'm doing well enough that he doesn't
want
>> to see me for checkup for another year, unless I have any difficulty -
>> then I'm to call him straight away. In the meantime I'm to continue
my
>> nine pill/day Colazal / once per day Protonix regimen. It appears to be
>> working for me. I am doing pretty good, though I do still have some
left
>> side discomfort so I'm not in what I'd consider "remission"...but I'm
>> doing very well. Things are under control for now.
>>
>> My biggest complaint is still chronic fatigue, and I have a theory on
that
>> that my doc says is plausible - I experienced severe insomnia while on
>> Asacol, and Asacol and Colazal are the same basic drug (mesalamine) but
>> differing in delivery method...so I feel that the Colazal is doing the
>> same thing, just not as severely - i.e.; while I'm sleeping better, the
>> mesalamine is still interfering with my deep sleep pattern, so I'm
feeling
>> that - particularly in the mornings.
>>
>> Doc said that that is plausible, and offered some sleep aids, but I
still
>> have some from when I was on Asacol and I might try Ambien CR again
just
>> to see if it helps any. I figure just occasional use should be ok -
maybe
>> once or twice per week. If it makes a difference I'll get my GP to
write
>> me for more.
>>
>> Anyway, bottom line is to keep doing what I'm doing because it seems to
be
>> working for me.
>>
>> --
>> - Rufus
>
>
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