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UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 5/15/2008 11:40 AM (GMT -7)   
Please see my note below - Ivy.

Post Edited By Moderator (ivy6) : 5/16/2008 6:40:38 PM (GMT-6)


UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 5/15/2008 11:41 AM (GMT -7)   
oops, here is the link to the article.... sorry...

<http://www.nytimes.com/2008/02/26/health/views/26case.html>
30/Female/NC
Pancolitis dx 3/07
9 Colazal a day (was on 12 Asacol/day, but suddenly got sick from it)
150mg Imuran/day (steroid dependent, reached this dose 9/07)
Rowasa in PM (is working wonders for me thus far)
Various vitamins, bit of fish oil, a probiotic.
Getting married October, 2008!!!!


Pooie1981
Regular Member


Date Joined Mar 2008
Total Posts : 274
   Posted 5/15/2008 2:02 PM (GMT -7)   
I'm sorry, I don't have Crohns but I couldn't help but post... I LOVE the article you wrote about UC.. especially where you say at the very end...

"Trusting in something outside myself is difficult. But I can say that I am learning to believe that things will work out well, just because they will. In one form or another, my life will continue, and it will continue to include the man I am marrying, family, friends, helpful strangers, gregarious toddlers. At least, it will for now. And that’s a start."

If anyone can help you answer your questions I hope they do.. I would love to see the resulting article. You write from the heart, I love it. :)
Jenn 26/female
Ulcerative Colitis Diagnosed May 2004
Sulfasalazine 500MG 4 times per day
Daily Vitamin for Women and Folic Acid


BitBit
Regular Member


Date Joined Oct 2007
Total Posts : 44
   Posted 5/15/2008 5:17 PM (GMT -7)   
Hello,
I read your article on UC and was thoroughly impressed.
As a person who was just diagnosed this past August, questions always arise especially as the doctor(s) are trying to figure out the best medication to alleviate the symptoms and achieve remission.
I think a newly diagnosed person should ask
What should I expect on a daily basis?
What foods should I avoid?
What are the side effects of the medications? Will I always be on these meds? Doses?
What is the prognosis for the future?
How will my dailylife be affected?
Always ask the doctor to explain their scientific terms like "stricture" or "fistula" in layman's terms?
What is the plan of action to achieve remission? What is remission?
What is the difference between mild, moderate, and severe Crohn's? What category do you fall into?

As for what I would like yo to ask the researcher:
Will there ever be new treatments that do not have the side effect of cancer (lymphoma) listed?
Will there be any nee biologic meds that are less resistant to antibodies?
And of course, how about a cure???

Can't wait to read the article!!

Mac_Gyver
Regular Member


Date Joined Aug 2007
Total Posts : 350
   Posted 5/15/2008 5:55 PM (GMT -7)   
A question I ways wanted the answer to is what is more looked at by the docotors, the top down method of medication (biologics first then the smaller stuff) or the ramp up method (small stuff and then biologics as a last resort). And what does the future hold for new treatments. I just started tysabri and it seems to be the only thing that has worked.
Symptoms Of Crohn's June of '06 (21 years old 285lbs). Colonoscopy in Jan '07 no sign of Crohn's.
Surgery for a Fistula in April '07, diagnosed suggestive Crohn's in May '07. August '07 small bowel follow
through, diagnosed with Crohn's (23 years old 180lbs). Off predisone and on tysabri 4/3/2008
============================================


patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 5/15/2008 6:27 PM (GMT -7)   
All of BitBit's suggestions are valuable for a newly diagnosed crohnie... but with an opportunity like this...

The questions that I would attempt to articulate would revolve first and foremost, around systemic treatments vs. symptomatic treatments ... by that I mean tactics that provide for "whole body health" rather than just patch up a particular part of your intestine...

Almost every person on here has a daily cocktail of nonsense that we swallow, inject or otherwise get into our bodies as best we can. Most of us, myself included, aren't even sure which pill is supposed to do what anymore. Unlike many other diseases though, sometimes the relief provided by these cocktails is barely noticeable. Our doctors make sure that we understand from the start that there is no cure. Every one on this board will probably agree that at one point or another (if not ALL the time) our doctors are completely making it up as they go along. Why, then, does it seem like doctors are more content to treat each ache and pain individually than to research and treat the entire body? Why aren't there studies being done (and if there are, where are they and how can we help?)... to find out links between our sleeping habits and flare-ups, between our state of anxiety and the perpetual viscous circle that so many of us fall into (where we get so worried about what our gut will do that we CAUSE it to do poorly based on our own worry...). And for pete's sake, are they even still researching what causes this stupid disease to begin with? I mean, I know there is the MAP bacteria theory, and a host of others, but I mean really... is there honest research going on? If we knew what triggered this disease, maybe we could better combat it, and if nothing else, at least keep our kids from getting it! But it seems like there is a medical preoccupation with money, because the vast majority of research is being done on "patches"... on drugs that might, or might not, make our symptoms less bothersome, but that I can guarantee you will be very expensive. I'm tired of patches. I am, along with many many other crohnies, seriously considering abandoning the field of medicine. Heck, at this point, I'm starting to think that swallowing a bucket of hookworms doesn't sound so bad if it would help me without hurting me (a previous discussion thread here on the crohn's board).

Maybe some people are content bouncing from doctor to doctor, and from pill to pill, for thirty years or more with this stupid disease. Maybe, until now, that's the only option we thought we had. But it seems to me, this shift - this shift toward a whole-body-health approach is also a "screw you" to the medical field. I don't think that we WANT to lose faith in the medical field, but in general - I don't think that you could find a more medically-jaded group of people than you'll find among us crohnies. Just from being on this forum for the last few years I have noticed a subtle shift... not away from medicine necessarily, but towards whole body health. While most of us cannot afford the "Garden of LIfe" approach, is there research to back up that general concept? Is there any research being done on every-day ingredients and chemicals and the effect that they have on our bodies?

I hope that somewhere in the above rant is an ounce of something that will help you articulate that which I cannot.
Best of luck to you on your article, and thank you for taking the time to ask. :-)
26f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade only, every 16 weeks.
Digestive enzymes, and probiotics.
Doing pretty darn good, all things considered. :-)

"Our greatest fear is not that we are inadequate, but that we are powerful beyond measure."

~Marianne Williamson


Mike W
Regular Member


Date Joined Aug 2006
Total Posts : 89
   Posted 5/15/2008 6:51 PM (GMT -7)   
Here is a question:

Mostly all of the new drugs/research in CD has seemed to veer towards the new biologics. This is understandable. They have shown significant efficacy in people who have not responded to other treatments, and they represent a significant future revenue stream for companies. However, these drugs have a tendency to stop working suddenly, and there is considerable research now concluding that they increase risks of all kinds of cancers. So...is there anything else out there being given significant backing (ie. research and trials)?

Thanks!
Diagnosed in 1999.
No surgeries.

Age : 31

Currently on 75mg 6mp and probiotics.


belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 5/15/2008 7:05 PM (GMT -7)   
What is the current thinking regarding crohn's disease and how it expresses itself. Is crohn's just one disease? Why then are there so many differences in the ways it expresses itself from one individual to another? How does the way crohn's expresses itself -- fistulizing, stricturing, inflammatory -- speak to differences in gene mutations? What is the next new frontier in crohn's research? Although there is a genetic link, it is much more tenuous than in true recessive gene diseases like cystic fibrosis. Does everyone with crohn's have the same genetic mutation? Or there are series of mutations that account for the differences in the way crohn's presents? if not, what accounts for those differences.
Belleenstein:

30+ years living with Crohn's.


Crohn'snme
Veteran Member


Date Joined Feb 2007
Total Posts : 734
   Posted 5/15/2008 7:31 PM (GMT -7)   

Hi, Well, my first thoughts were, what is Crohns, how did I get it and how will it effect my life.  Oh and I asked if it was cureable.  Obviously now, I know the answers to those questions and maybe it was better that they weren't honest with me.  It might have been too devastating. 

 

Questions I have now, does he or she think there is a cure on the horizon?   How much does family heredity play into it?  I have heard so many different ideas.  6 siblings, one has IBD and one diverticulitis.  Grandmother had Crohn's.  Do I have to worry my children will deal with this.  What are some of the new drugs on the horizon?  What are some of the diseases that Crohn's can lead to.  Systemic problems from drugs?  Long term affects of these new drugs.  I took Remicade for over 5 years, what will my side effects be?  Does anyone really know?

 

Thank-You for your interest in this disease, much appreciated!


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 5/15/2008 8:22 PM (GMT -7)   
Thanks UCinNC...and that was a great article! Here's my question:

If there is this supposed genetic link with CD, how does one explain it showing up in a child in a family where there previously has been no CD on either side? (and we know both sides of the family waaaaaay back) confused

...Or in the case of identical twins where one has CD and one does not?
EMom
Mother to 16 year old boy diagnosed in June, 2007.
Currently taking Asacol, omega 3s, digestive enzymes, probiotics, iron, vit. C, calcium w/D3 and a good multivitamin.
Started The Maker's Diet in early September. Gradually learning/using more SCD recipes, too! (cooking challenged)


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 5/16/2008 1:14 AM (GMT -7)   
UCinNC, please contact the site administrator and ask his permission to conduct your research on this forum.

Forum rules:

5. No posts regarding research studies, surveys or clinical trials without obtaining prior approval from the forum administrator before posting to the forums.

Thanks,

I.
Co-Moderator Crohn's Forum.


UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 5/16/2008 6:16 AM (GMT -7)   
{Edited, for the same reason - Ivy}

Post Edited By Moderator (ivy6) : 5/16/2008 6:40:05 PM (GMT-6)


UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 5/16/2008 6:57 PM (GMT -7)   
ivy - how do I contact the administrator? I tried earlier but couldn't, so please don't think I ignored your comment.
I understand your concerns and am trying to comply.... assistance would be appreciated. thx
30/Female/NC
Pancolitis dx 3/07
9 Colazal a day (was on 12 Asacol/day, but suddenly got sick from it)
150mg Imuran/day (steroid dependent, reached this dose 9/07)
Rowasa in PM (is working wonders for me thus far)
Various vitamins, bit of fish oil, a probiotic.
Getting married October, 2008!!!!


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 5/16/2008 7:30 PM (GMT -7)   
At the top right-hand side of your post there are the 3 buttons, the "quote this post", ignore post and alert admin, you can probably contact him using "alert admin"...I'm not sure if this is the correct procedure but it'll be a way of contacting him...I always have a heck of a time finding how to email him directly myself...I've done it a few times but it takes me a while surfing around finally finding where to email him directly.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 5/17/2008 2:59 AM (GMT -7)   
... or you can email him at admin@healingwell.com

If you ever need to find his contact details, just click on "Moderators" in the forum links menu to your right. Admin is listed there, as he's the super-mod.

Thanks UC - I kinda did feel like you were ignoring me, so thanks. :-)

I.
Co-Moderator Crohn's Forum.

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