My GI Says Im Awesome, and I agree

[MissD]

Back to the GI today for my first visit after diagnosis.

I presented with a CRP of 260! How cool is that? Thats like way high. Thats like way way high. Thats like now that I know how high that really is, thats super awesome high. Bloods today however show my CRP at 3.4. Thats a pretty big drop hey?

 

[Astra]

Yes that's a big drop, well done!
I was 261 last year when I was in hospital and at my last blood work It was 19
Hope it stays low for you, take care
xxx

 

[MissD]

Thats in 12 days people. 260 down to 3.4 in 12 days.

Admit it, im awesome.

 

[Astra]

Yes, you're awesome!
12 days is crackin!

 

[MissD]

So I gave em some of my dna today so they can run off with it and see if theres any part of the awesomeness that is me, that they might be able to use to see why other people arent as awesome as me, in the hopes that we can all be awesome together one day.......


Ps, i have yet to develop a hate relationship with Pred, cos frankly that stuff is at least as awesome as me to be doin such awesome work in such an awesomely small time. Tomorrow we drop it by 5mg. Lets hope it remains awesome, thus keeping me awesome. Cos Awesome is an awesome feeling. I celebrated with a can of coke and a chocolate pudding. I would have had a cigarette too, but they made me give them away. So I just bought a packet in a celebratory sort of way. I didnt smoke one of em, I just bought the packet.

 

[Cat-a-Tonic]

Ha ha, Miss D, I know the feeling of being awesome on pred. I got so much cleaning done during the short time that I was on pred! And that's amazing that your CRP dropped so dramatically in such a short amount of time. Why are they testing your DNA? I'm undiagnosed, maybe I should get my DNA tested?

 

[lulu2]

I read the DNA bit as a joke....... as far as Im aware (in my limited 5 years of med school alone knowledge [and no Im not being sarcastic, 5 yrs is a v short amount of time, i still have much to learn]) there are no DNA tests for IBD.... there's testing for autoantibodies in some bowel disorders such as coeliacs (anti gliadin, endomysial and bugger me I've forgotten the last one, begins with T....... transglutaminase - ok so i had to look the last one up, plus i dont expect anyone to now be reading this, i was just checking i could still remember - exams were 4 whole weeks ago now!!!) but DNA testing is reserved for genetic syndromes..... now Im NO expert on these at all, but given that the orignal poster has a diagnosis of IBD I doubt she'll be tested for these (but i could be wrong!!!) so yeah in summary i read that as a joke that they're trying to isolate her "awesomeness" gene!!
xx

 

[MissD]

Im not really sure what its all about Cat. They asked me if they could take some DNA for further research along the lines of what genetic strain is affected, can they make a 'match' against other peoples genetic strain, rah rah. Its all beyond me. But I figured what the hey, if they can find out anything from takin a few extra bottles of blood off me then by all means go ahead.

They did say something about possibly getting dna samples from other family members of mine in the hopes of making connections somewhere, although no one else in my family has anthing like crohns. We are usually a healthy bunch, apart from the old man who had a heart attack then developed diabetes, but cmon already, hes 75, you gotta expect something to start givin way at that age.

Might be interesting though if they find some kind of marker to find out if my kids might be more susceptible. Who knows. Not me. I just gave em another vein and told em to take as much as they wanted. NOt that my veins are much good. They got totally trashed when I was in hospital. Ive got a thrombosis? in one now. Some of em dont wanna give much in the way of blood at all, half the others are still carryin bruises.

I wouldnt make a very successful junkie *yeah im laughin at that myself, considering im now going to be takin some kind of drug every day for ever*

 

[lulu2]

AND I stand corrected!!!!

Sounds like it's for research purposes tho from the way u describe it.....

 

[MissD]

Ok, so now Ive gone to get the papers that I was signing today to type some of the bits out of it so you can see what im on about.



This is right out of their paperwork:

There is still a lot that we dont know about IBD. WE do know that some of the risk of developing Crohns disease or ulcerative colitis may be inherited. To understand why this occurs we need to look for genetic differences between people who have IBD and people who do not; we also need to look at the genes of patients close relatives. We are interested in investigating how these conditions progress with time, and which genes may play a role in this process. A number of environmental factors, like smoking and diet, may also play a part in disease development, or influence whether a patient has mild or severe disease.

skip some blah blah crap and continuing on:
We will use the blood samples to do biochemical and DNA tests, to look for factors that may make some people more or less likely to get IBD. WE may also use blood samples to make long-lived cell lines, so that the cells can be used for further biochemical and genetic tests.


more blah blah about storage and stuff and continuing on:
This study is not considered genetic testing, as there is currently no test that can identify whether a person will get IBD. The work, however, will examine your DNA for markers that may in the future allow for genetic testing to be undertaken to diagnose or identify a persons risk in developing IBD.



That make much sense to anyone?

 

[lulu2]

Yeah it does, it's a research study. Your blood results won't directly affect you on this one by the sounds of it - they're taking samples from IBD sufferers to determine if there is something in you're DNA which contributes to the likelihood of you developing the disease.... if they find a link ie a gene they many be able to in the future develop new tests and treatments for IBD... the purpose of the study sounds mainly like information gathering as there is still lots that isnt known about IBD..... like the cause!

xxx

 

[MissD]

Like I said...if it helps anyone by takin a few extra bottles of my blood then they can take as much as they want.

 

[ThanksP]

As part of a drug trial, they offered me the same option of basically donating my DNA to research. I declined because I really didn't want my DNA out there for Pfizer, the FDA, and whomever else to do whatever they wanted with it. I guess I'm a little paranoid about that type of thing. But the consent form reads almost identical to yours, minus the blah blah blah parts LOL.

 

[Misty-Eyed]

Yeah it does, it's a research study. Your blood results won't directly affect you on this one by the sounds of it - they're taking samples from IBD sufferers to determine if there is something in you're DNA which contributes to the likelihood of you developing the disease.... if they find a link ie a gene they many be able to in the future develop new tests and treatments for IBD... the purpose of the study sounds mainly like information gathering as there is still lots that isnt known about IBD..... like the cause!

xxx

From the research I did for my dissertation last year, I read quite a few papers on genetics and IBD. There's already some conformed links, most notably with gene NOD2. Obviously there's still a lot of research being done. But I know that there are already general DNA tests that people that pay for privately which looks at their risks of getting certain diseases and they list Crohn's as being one of them.

 

[lulu2]

misty eyed - I did not know that! Thanks, what was your dissertation on? I know that there is a family link with crohns and that also they believe the most likely cause is autoimmune, but Im more up on symptoms, investigations and management than anything else, particularly of acutely ill patients....... anything more complex and I get my seniors involved!

Wow at people paying to know their risks of getting certain diseases - I don't think i'd want to know cos you might spend your whole life worrying about that "inevitable" disease and it might not happen. And even if it does, its not worth the pre worry and THEN the misery it causes when you DO have it......

 

[Misty-Eyed]

It was on an overview of Crohn's disease! lol. I was supposed to do one on repair mechanisms in DNA but my supervisor left uni and I didn't have enough time to do a completely new research project! Ahh!

Yeah I completely get that. I'd like to know if I was a carrier for things though, like cystic fibrosis.

 

[JetWhite]

Great recovery, well done :thumleft:

 

[soretum]

Love it, you are definitly awesome