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NY Times article, 6/3/14

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Posted 6/4/2014 2:36 PM (GMT 0)
Sounds like we are heading in the right direction....page D7....let's hope so!
Posted 6/4/2014 2:49 PM (GMT 0)
well.blogs.nytimes.com/2014/06/02/new-therapies-for-a-debilitating-condition/?_php=true&_type=blogs&_r=0

the new biologic drugs should help a lot, but I think the real breakthroughs will be in probiotics, copled with individualized profiling of gut microbes. stem cell theapies took a step back recently, but are not dead yet.

I think the main value of fairly general articles like this is the higher public visibility.
Posted 6/4/2014 3:28 PM (GMT 0)
It was a good read but very broad about the topic of IBDs. I wish the article mentioned more about the rise in IBDs over the last decade, when I was dx'd about 9 years ago there were about a Million cases of IBDs in the US, now the article lists 1.4 million Americans with IBDs which is a 40% increase in a decade. If a rise like that happened in well known disease in the US there would be much more media attention and hopefully that would lead to more funding and research in IBDs.

I had my colon removed 8 months ago and I feel like that person the author writes about, I'm much more engaging and happy now, more like I used to be before I got UC. Living with UC was really tough on me, tougher than I realized at the time and I can only see that now that my nasty colon is gone.

The surgeon that I used for my surgeries was mentioned in the article.
Posted 6/4/2014 3:40 PM (GMT 0)
Draconian methods indeed...

I agree in that it's a good general sense of IBD article. I too would like to see an article that details the surge of IBD rates and why it is happening. We know from hospital data that pediatric hospitalizations from IBD have increased 2-3 fold in the last 10 years. My guess is that correlates well with the high antibiotic use in children.

I also believe that far too many people remain undiagnosed and wait until the disease reaches maximal severity to get treated. The statistics can be very deceiving at times, which is why I analyze them as the lower bound.
Posted 6/4/2014 4:01 PM (GMT 0)
We will see a higher increase now that the ACA was passed and there is free preventive screening (C-scopes) with all health insurance policies. But that doesn't account for the previous decade or so of higher rates on IBDs in America.
Posted 6/4/2014 4:17 PM (GMT 0)
The article is written very casually by a blogger, as indicated by the frequent mistake of using the word "colostomy" as opposed to "ileostomy" bag while referring to UC surgery, kind of like how IBD and IBS are often used interchangably in casual articles. But still, its good to see IBD get some spotlight.
Posted 6/4/2014 5:14 PM (GMT 0)
From the article:

“Surgery is a therapy, not a failure of therapy.”

She added, “If doctors persist with medical therapy to avoid surgery, they may be subjecting patients to chronic flare-ups.”
Posted 6/4/2014 5:33 PM (GMT 0)

Pluot said...
From the article:

“Surgery is a therapy, not a failure of therapy.”

She added, “If doctors persist with medical therapy to avoid surgery, they may be subjecting patients to chronic flare-ups.”

The same article that doesn't know the difference between an ileostomy and a colostomy. Or the surgical rates for IBD, which, in fact, have not become rarer. It's journalistic tosh.

And removing the colon is not a trivial matter either. You are removing all of your colonic bacteria, neurotransmitters, etc. in a single stroke. How people can think this has no effect on anything is beyond me. I'd rather be on Remicade for the rest of my life than have a colectomy, knowing what I know now. Which is not a lot, but it's enough for me to have some serious doubts about my physical and mental health post-colectomy.

Post Edited (NiceCupOfTea) : 6/4/2014 11:37:26 AM (GMT-6)

Posted 6/4/2014 6:00 PM (GMT 0)

NiceCupOfTea said...

Pluot said...
From the article:

“Surgery is a therapy, not a failure of therapy.”

She added, “If doctors persist with medical therapy to avoid surgery, they may be subjecting patients to chronic flare-ups.”

The same article that doesn't know the difference between an ileostomy and a colostomy. Or the surgical rates for IBD, which, in fact, have not become rarer. It's journalistic tosh.

It's a quotation from the director of the foremost center for IBD care in New York City.
Posted 6/4/2014 6:20 PM (GMT 0)
I am happy there are articles generating awareness but I felt that barely scratched the surface of UC.
Posted 6/4/2014 6:55 PM (GMT 0)

NiceCupOfTea said...

And removing the colon is not a trivial matter either. You are removing all of your colonic bacteria, neurotransmitters, etc. in a single stroke. How people can think this has no effect on anything is beyond me. I'd rather be on Remicade for the rest of my life than have a colectomy, knowing what I know now. Which is not a lot, but it's enough for me to have some serious doubts about my physical and mental health post-colectomy.

1. I doubt that anyone can stay on Remicade for the rest of their lives (unless they didn't live that long) because we build up antibodies to Remicade/Humira/Simponi/etc... With many other medications including non-IBD medications they lose their effectiveness overtime and have to increase dosages or change medications completely.

2. Now that I had my colon out I feel so much better, better than I ever felt in remission on Remicade/6-mp/Cyclopsorine and some of those were good clinical long-term remissions. OldHat had a post about a medical conference that she went to and a doctor did a presentation with a slide of a very diesased Colon that was removed from the patient. OldHat said that 2/3 of the colon looked like gray rotten meat the other part of the colon looked a healthy reddish pink color like in c-scope photos.
Posted 6/4/2014 7:47 PM (GMT 0)
Let's face it....it's the over use of antibiotics, and the food industry. The amount of processed food in this country is horrendous. Article 57 was vetoed which would have had forced the food industry to indicate whether they use GMO's (genetically modified organisms) in their products. The soil is depleted of nutrients and our water is a poor quality....and bottled water isn't much better. We only buy organic, local grass fed free range meats, and use a whole house water filter.....hoping my kids will not inherit my disease!
Posted 6/4/2014 7:53 PM (GMT 0)
The side effects of Remicade or any drugs will kill you before the disease does. Has anyone had part of their colon removed with success? I'm tired of drugs after 19 years....and it's a fact "If doctors persist with medical therapy to avoid surgery, they may be subjecting patients to chronic flare-ups". I am complete proof of that. I used to be able to get into remission for months, even years at a time. Now I can have one good month and that's it....my DR. says Prednisone, 6mp and Lialda at the same time should do it.....for me Lialda does nothing and I don't want to be on anything anymore!
Posted 6/4/2014 9:12 PM (GMT 0)

Pluot said...
It's a quotation from the director of the foremost center for IBD care in New York City.

Quoted by a clueless journalist.

To be honest, I don't take much notice of what doctors have to say about treatments anyway. It's their job to sell the treatments; it wouldn't make good business sense to drive punters away by telling them about horrible side-effects, low efficacy rates, and so on. Ditto with surgeons and surgery.

notsosicklygirl said...
I am happy there are articles generating awareness but I felt that barely scratched the surface of UC.

Same.

ks1905 said...
1. I doubt that anyone can stay on Remicade for the rest of their lives (unless they didn't live that long) because we build up antibodies to Remicade/Humira/Simponi/etc... With many other medications including non-IBD medications they lose their effectiveness overtime and have to increase dosages or change medications completely.

Unfortunately you are right. As for your second paragraph, so what, really? I never got to see what my colon looked like and I don't care. I was healthier in my early years of Crohn's than I am now.

neesie466 said...
The side effects of Remicade or any drugs will kill you before the disease does. Has anyone had part of their colon removed with success?

For UC? Ain't happening, unless you have limited Crohn's colitis instead. But for UC it's either the whole colon which goes or nothing.
Posted 6/5/2014 4:06 PM (GMT 0)

NiceCupOfTea said...

Pluot said...
It's a quotation from the director of the foremost center for IBD care in New York City.

Quoted by a clueless journalist.

To be honest, I don't take much notice of what doctors have to say about treatments anyway. It's their job to sell the treatments; it wouldn't make good business sense to drive punters away by telling them about horrible side-effects, low efficacy rates, and so on. Ditto with surgeons and surgery.

Their job is NOT to sell treatments, their job is to treat the patient whether it is with medications, diet or even surgery. Lets face it, IBDs are hard to treat and many treatments don't work for people. With IBDs it is trial and error until they find what works. In the end 20%-30% of UC patients will need surgery for a variety of reasons.

I never had my IBD-GI push medicines on me, he always offered and discussed different medicine with me but in the end it was my decision on what medicines that I wanted to use.

He actually took away medicines from me, never pushed them. When I finally made the decision to have surgery he told me that I needed to stop Simponi because I was all ready on another Immunosurpressent (Predisone) and he wanted my immune system to be stronger for the surgery.

I basically had to beg for Predisone because he doesn't like all the side-effects that it causes, I couldn't blame him but I needed something that I knew worked for me. I'm still kicking myself for taking Pred because my skin was so weak from the Pred that when they did my 1st surgery my skin split/stretched and now I get to go to the plastic surgeon to fix the stretch marks on my stomach.
Posted 6/5/2014 4:17 PM (GMT 0)
Try cocoa butter before surgery for the stretch marks. It fixed my stretch marks. Apparently, the oleic acid in it is responsible for fixing some of the mitochondrial damage caused by the pred (and antibiotics). You can google it for further information.
Posted 6/5/2014 5:00 PM (GMT 0)

ks1905 said...
Their job is NOT to sell treatments, their job is to treat the patient whether it is with medications, diet or even surgery. Lets face it, IBDs are hard to treat and many treatments don't work for people. With IBDs it is trial and error until they find what works. In the end 20%-30% of UC patients will need surgery for a variety of reasons.

I never had my IBD-GI push medicines on me, he always offered and discussed different medicine with me but in the end it was my decision on what medicines that I wanted to use.

He actually took away medicines from me, never pushed them. When I finally made the decision to have surgery he told me that I needed to stop Simponi because I was all ready on another Immunosurpressent (Predisone) and he wanted my immune system to be stronger for the surgery.

I basically had to beg for Predisone because he doesn't like all the side-effects that it causes, I couldn't blame him but I needed something that I knew worked for me. I'm still kicking myself for taking Pred because my skin was so weak from the Pred that when they did my 1st surgery my skin split/stretched and now I get to go to the plastic surgeon to fix the stretch marks on my stomach.

In that case, you must have found the one doctor in the united states who isn't medication-happy. Congratulations.

Edit: And, yes, selling drugs is precisely it's all about. First, pharma reps sell the drugs to the docs, then the docs sell them to the patients. The rare doctor with an independent mind and a conscience doesn't change the commercial nature of modern medicine. Don't get mad at me about it.

At the very least, I've never had a doctor warn me about side-effects. Never. And when I've tried to tell them the side-effects I've experienced, they've shown no interest. And of course it's your decision on what meds to use: you are an adult and it is not (yet) illegal to refuse medication. I've refused loads of meds because of their bad side-effects and low efficacy. It's not me making up the low efficacy rates either; it's all on pubmed. Doctors should thank their lucky stars for the placebo effect, that's all I can say.

Post Edited (NiceCupOfTea) : 6/5/2014 11:20:46 AM (GMT-6)

Posted 6/6/2014 1:29 AM (GMT 0)

NiceCupOfTea said...

ks1905 said...
Their job is NOT to sell treatments, their job is to treat the patient whether it is with medications, diet or even surgery. Lets face it, IBDs are hard to treat and many treatments don't work for people. With IBDs it is trial and error until they find what works. In the end 20%-30% of UC patients will need surgery for a variety of reasons.

I never had my IBD-GI push medicines on me, he always offered and discussed different medicine with me but in the end it was my decision on what medicines that I wanted to use.

He actually took away medicines from me, never pushed them. When I finally made the decision to have surgery he told me that I needed to stop Simponi because I was all ready on another Immunosurpressent (Predisone) and he wanted my immune system to be stronger for the surgery.

I basically had to beg for Predisone because he doesn't like all the side-effects that it causes, I couldn't blame him but I needed something that I knew worked for me. I'm still kicking myself for taking Pred because my skin was so weak from the Pred that when they did my 1st surgery my skin split/stretched and now I get to go to the plastic surgeon to fix the stretch marks on my stomach.

In that case, you must have found the one doctor in the united states who isn't medication-happy. Congratulations.

Edit: And, yes, selling drugs is precisely it's all about. First, pharma reps sell the drugs to the docs, then the docs sell them to the patients. The rare doctor with an independent mind and a conscience doesn't change the commercial nature of modern medicine. Don't get mad at me about it.

At the very least, I've never had a doctor warn me about side-effects. Never. And when I've tried to tell them the side-effects I've experienced, they've shown no interest. And of course it's your decision on what meds to use: you are an adult and it is not (yet) illegal to refuse medication. I've refused loads of meds because of their bad side-effects and low efficacy. It's not me making up the low efficacy rates either; it's all on pubmed. Doctors should thank their lucky stars for the placebo effect, that's all I can say.

Weird...I must have found the other 3 doctors who aren't medicine happy (my gi, my gp, and my surgeon who I had a consult with). I didn't even look particularly hard.

Sounds like you have some crappy luck with doctors....but my gi very thoroughly went over all the potential side effects and practically refuses to give me prednisone.
Posted 6/7/2014 6:41 AM (GMT 0)
Keith, I didn't say that the 2/3 diseased colon looked gray; in fact, its damaged sections looked totally BROWN-- the color one sees on rotting parts of fruits & veggies, too-- indicating terminal decay. Is Dr. Michelassi your surgeon? If so, WOW!!!!!*** Pluot, did you notice that all the male doctors cited in this article had their full titles listed, whereas the female Dr. Scherl was merely termed "a gastroenterologist at ... [institution]"? I find that pretty outrageous considering her credentials & dedication to IBD clinical practice/medical research over 3 decades. *** Of course the major irony apparent to us IBD long-termers is physicians' recent about-face on the merits of dietary change as a factor in effective therapy. For sure I helped myself after DX nearly 34 yrs ago by erring on the side of caution & eliminating identifiable dietary irritants plus antibiotics as much as possible. / Old Hat (33 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 6/7/2014 12:16 PM (GMT 0)
I did NOT notice that! Good catch Old Hat and UGH that is super annoying.

Dr M was my surgeon too. He's terrific.
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