Comment my mark4623

Stop, you will get mark banned and i'd hate for that to happen, i wear each of his insults with a badge of honour!

thanks, Michele.

Well done Michelle on getting rid of that disgusting post from Mark.

Lol...

If a drug works for me on an individual level then I don't care if the success rate is 30% or 60%.

The low efficacy rate of individual drugs is because there are different phenotypes of UC. These days there are many different drugs to try. Each works by a different mechanism and researchers are figuring out how to predict whether a drug will work on any given patient from taking a biopsy, so that they don't have to waste time finding the right treatment by trial and error.

I don't like "pumping" immunosuppressants into my body but I had zero quality of life without them and now I'm living my life like a normal person, thanks to those drugs. I am grateful that they exist. If none of the drugs had worked for me, I would have gone for surgery and got on with my life.

I'm 100% in favour of methods to treat UC that don't involve immunosuppression. There are many researchers around the world working on this problem and they do it in a much more humble and professional way than the person who has caused so much controversy on these forums. The paper you mentioned is really badly written and doesn't even contain any new science but is a rehash of his previous papers packaged as a "cure".

If I spot poor science and unprofessional/questionable behaviour I will point it out. Just as I will point out untruths about the way scientific research works (there are plenty of hospitals/institutions working on projects that are NOT connected to pharmaceutical companies. Especially outside the US).

Every time I or anyone else provided another paper on the subject - better written, in superior journals - it was ignored. Surely it's part of being curious and unbiased to study all sources and not just the one that paints a nice story.

People should be allowed to point out flaws in a paper as part of a discussion. And yes the doctor in question has some behaviours that are typical of quack doctors. Up to you whether you want to give him the benefit of the doubt or not.

Bear with me for the long post again, but for the record I tend to agree that biologics are extremely valuable, and in no way, shape, or form would I ever discredit positive testimony from a patient who's had their life turned around with biologic treatment, nor would I ever actually attack modern medicine. I spend most of my time reading about the bleeding edge of medicine and sharing what I read. It really doesn't get any more modern than that.

I think it's disgraceful when people use chronic illness to sell you something. I remember shortly after my diagnosis one of my friends sent me a link to a probiotic you could purchase online, telling me it'd make it all go away. He must of spent all of about 10 minutes looking it up. I was pissed and didn't talk to him for nearly a week. I was angry because these kinds of ploys undermine my intelligence. I stay awake until 4:00 in the morning reading about the latest research being done, but all it takes is a TV doctor's magic beans? Trust me, I get it.

Abstracts on ulcerative colitis are published on engines like PubMed literally by the day pushing for studies on various subjects. Whether it's on the fecal microbiome, yeast, vaccination complications, or radical induction. Old Mike was just posting about connections to niacin. One theory just so happens to be put out by a Harvard graduate and immunologist who's much smarter than I am, and he even included treatment modern medicine can provide today, not in the future, that's why it's talked about so much.

And another thing, while there are a few strong theories about what causes ulcerative colitis, the fact is, there is no universally accepted, proven cause. If we don't know what causes it, that leaves the door open to virtually any possibility, and it would be unwise to close the door on anything yet, and yes, that includes theories that prove radical induction are wrong too.

20 years ago, I was dependent on methotrexate and prednisolone for uveitis that was so severe it took me across state lines twice to be examined by doctors from different hemispheres. Then it stopped, and I haven't needed anything since (knock on wood). That means something in our bodies can influence severe idiopathic inflammation. I hope we find out what that is as it relates to ulcerative colitis, soon.

There should be common ground here:

- Ulcerative colitis occurs.
- It poses severe financial burdens to many.
- We would like there to be less of it.

It is incumbent upon modern medicine to address the last point, and we can hope for that, while appreciating how far it's come.

Lowlead,

Good post.

Flowers--I didn't catch that. Good eye!

Clo

When people are comparing medical treatments they should use a matrix and consider more than just the medication’s effectiveness rate.

I’ve taken Cyclosporine for severe flares and it has about a 90% effectiveness rate when you take via IV in a hospital, but you take it in a hospital and it has side-effects and risks that most people do not want to deal with. So give me a biological that works relatively quickly, has very few side effects, and is 30-40% effective. It’s a better choice IMO, I’ve taken both types of medications and have had surgery. And I wish that I had surgery long before I did, taking Cyclosporine to save my colon was a mistake but it was fast and effective.

Ah charlie just asked the same question I was about to.

I have a family member who is a gastroenterologist, he said he had patients coming into his office after surgery saying "Why didn't you do this 20 years ago?".

i know u are a 30s guy keith....how has the hip replacement affected u in terms of being active for sports? can you still run etc?

also did u suffer from non-pred related ExtraIntestional Manifestations pre surgery and if you did have these going away after surgery

thanks