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rsc07c

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edit: Not sure I'm going to be able to get what I was looking for here, sorry for the wasted time.
 
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rsc07c said:
irritable bowel disease (Crohn's, colitis, IBS, etc.).
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Do you really have Crohn's? People who lump IBD and IBS together tend to get an angry reaction from me. Crohn's has nothing to do with an irritable bowel.
 
Creepy Lurker said:
Do you really have Crohn's? People who lump IBD and IBS together tend to get an angry reaction from me. Crohn's has nothing to do with an irritable bowel.
Click to expand...

Yes I do (unfortunately). I was actually diagnosed with celiac (intolerance to gluten) when I was 12 but after not seeing results after 8 months I switched gastro's and was diagnosed with Crohn's at 13. Been going on 5 years now and still fighting the fight. And it was an honest mistake, didn't intend to offend someone :smile:
 
I'll add that, being a University level study, it should be fully designed to be compliant with privacy laws (international as this is an international source that you are using). That would include information release forms (with intended use of data descriptions) and anonymisation of data sets.

You need to give out valid contact details too. An official (university) email address would be a start.
 
i dont mind playing:) but i'm at work at the moment. i can answer it properly for you later tonight or on the weekend.

1.What is your name? Jed (or JeddyPoo)

2. What were the circumstances surrounding your diagnosis? (i.e.- how old were you, what symptoms led you to seek further examination, what types of exams were used to evaluate you, etc.) I was 31 years old, full of life and love and hope, until blood from my anus scared me, so I went and saw a doctor. They proceded to shove various instruments in me in a kinda south park abductee episode.

3. What were you initial thoughts about possibly having a serious health condition? Well, this is no good….. I wanted a healthy life please…. Hmmmmm, where’s the complaints department?

4. Have you received more than one opinion regarding your condition? Nah, if I trust them to stick there fingers in me, I trust there diagnosis

5. Describe your initial emotional reaction to receiving the news that you had Crohn’s. “crohns? Whats that? Can I still drink beer?”

6. In what ways did your social life change following your diagnosis? I know where everyones toilets are now, they cant hide from me. Plus I stay home a lot more now.

7. What medicating methods has your doctor tried? Everything except biologicals (humira etc).

8. How do think a life with Crohn’s differ from one without having it? A lot less time spent on the toilet. Less money spent on toilet paper and drugs.

9. What have been the biggest obstacles you’ve encountered before and after diagnosis? Before the diagnosis? I once couldn’t decide whether I wanted chockolate or strawberry ice cream. After diagnosis, the possibility of not having kids.

10. How has your life changed since being diagnosed? Well, I take a lot more drugs now. And farting is scarey.

11. In what ways have you attempted to cope with living with a chronic illness? By alienating everyone around and making them feel bad that they’re normal. Only kidding. I just keep on living, its business as usual.


12. Since being diagnosed, how have you changed your perspective on the concept of being “healthy”? yeah, 10 trips to the toilet perday and a mildly itchy anus is now my “healthy”

13. Since being diagnosed, how have you changed your perspective on other individuals having to cope with chronic illnesses? (not necessarily Crohn’s) yeah, life sucks for some people, I know how they feel.

14. How has your diagnosis altered your outlook on life? Nah, keep on playing the game.

15. How would coping with Crohn’s rank among the most difficult of your life’s challenges? One of the biggest. But I am very handsome, so that’s always been hard to live with as well.
 
You said that you only need one response. I'll play, but I won't bother if you aren't going to use it.
Lemmeno. (My friend writes that for "let me know". I think it's cute.)
 
my response will be better than MBH's.
her answer to everything is Drew_Wymore

:D
 
Only my BEST answers are so-frikin-cute-I-can't-stand-it-Drew-Wymore-covered-in-frosting-relocating-to-New-York-hope-he-doesn't-snore-mmm.
But I'll try my best on the survey.
 
:) i got yours started for you MBH:)

3. What were you initial thoughts about possibly having a serious health condition? i wonder if i will; meet any cool guys?


6. In what ways did your social life change following your diagnosis? i now have an online boyfriend


8. How do think a life with Crohn’s differ from one without having it? i would've never met drew

9. What have been the biggest obstacles you’ve encountered before and after diagnosis?
After diagnosis, telling hubby about drew.

10. How has your life changed since being diagnosed? i met drew, best thing thats ever happened

11. In what ways have you attempted to cope with living with a chronic illness? drew keeps me sane
 
You're right. Your answers ARE better than mine.
Well, except for #9. Is that an obstacle? Don't you have to overcome an obstacle? Am I telling hubby something here??
(He IS wondering why I'm more frisky lately. It's HOT in here I tell ya'. Shhh.)
And #11. Drew keeps me INsane!
 
1.What is your name? Amy

2. What were the circumstances surrounding your diagnosis? (i.e.- how old were you, what symptoms led you to seek further examination, what types of exams were used to evaluate you, etc.) I was 25-26. I had bloody frequent and urgent diarrhea during my pregnancy. I had a colonoscopy and was diagnosed with IBD.

3. What were you initial thoughts about possibly having a serious health condition? I was upset that I would have to deal with an incurable disease for the rest of my life.

4. Have you received more than one opinion regarding your condition? I have seen a total of 5 GI doctors. None of them had the cure! Just kidding, I love my current GI.

5. Describe your initial emotional reaction to receiving the news that you had Crohn’s. “crohns? Initially I was glad that the doctor had been able to diagnos me. Then I got on the internet and realized I was in for a long road.

6. In what ways did your social life change following your diagnosis? Considering I had just had a kid I was busy to begin with. But I definitely can't say I was very social.

7. What medicating methods has your doctor tried? Everything except biologicals (humira etc). I've tried, asacol, azathioprine, and prednisone.

8. How do think a life with Crohn’s differ from one without having it? I am a better person because I appreciate what I do have and the moments I do feel good.

9. What have been the biggest obstacles you’ve encountered before and after diagnosis? Before the diagnosis? I thought I was having side effects to the pregnancy hormoens. After diagnosis, weight gain from steroids has been awful.

10. How has your life changed since being diagnosed? I think my life has changed drastically because of weight gain and joint pain.

11. In what ways have you attempted to cope with living with a chronic illness? I go to the doctor when I'm sick and take the medications that I'm told to.

12. Since being diagnosed, how have you changed your perspective on the concept of being “healthy”? I think that it's a crapshoot. We are mostly lucky to be healthy and unlucky if we get an incurable disease (there are, of course, exceptions)

13. Since being diagnosed, how have you changed your perspective on other individuals having to cope with chronic illnesses? (not necessarily Crohn’s) I'm not as sympathetic sometimes but I am empathetic. Is that possible?

14. How has your diagnosis altered your outlook on life? I'm less religious but was already pretty atheist-minded

15. How would coping with Crohn’s rank among the most difficult of your life’s challenges? The biggest, hands down.
 
Creepy Lurker said:
Do you really have Crohn's? People who lump IBD and IBS together tend to get an angry reaction from me. Crohn's has nothing to do with an irritable bowel.
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Actually my GI (Dr. Remo Panacionni) who's also a researcher for crohn's and colitis in Canada would likely disagree with your statement...

In his words he told me that for IBDers (either CD or UC) that have severe and/or long flares can infact end up with irritable bowel syndrome as well...and even though they are 2 separate entities they can coincide with one another, just like although it's very rare (2%) one patient can actually have BOTH UC and CD even though they are also considered 2 separate diseases.

:)
 
Wait....

Dr. Remo Panaccione? University of Calgary? He's one of the top researchers in the country.

I'm in Calgary too. I'd be more than willing to participate in ANY study.
 
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pb4 said:
Actually my GI (Dr. Remo Panacionni) who's also a researcher for crohn's and colitis in Canada would likely disagree with your statement...

In his words he told me that for IBDers (either CD or UC) that have severe and/or long flares can infact end up with irritable bowel syndrome as well...and even though they are 2 separate entities they can coincide with one another, just like although it's very rare (2%) one patient can actually have BOTH UC and CD even though they are also considered 2 separate diseases.

:)
Click to expand...

Bah, that's a technicality ;)
 
I'm living near one of the top Gastroenterology research schools in North America, and today contacted Dr. Panaccione and told him I'd volunteer for ANY study or research trial he undertakes. I figure I have nothing to lose, even if all I end up doing is taking a placebo.
 
GoJohnnyGo said:
I'm living near one of the top Gastroenterology research schools in North America, and today contacted Dr. Panaccione and told him I'd volunteer for ANY study or research trial he undertakes. I figure I have nothing to lose, even if all I end up doing is taking a placebo.
Click to expand...

I pm'd you :)
 
rsc07c said:
edit: Not sure I'm going to be able to get what I was looking for here, sorry for the wasted time.
Click to expand...

Yup - rsc07c flew the coop.
All that smart-assing around made him leave. And it wasn't even ME this time!
How do you feel about that JED?
(tee-hee)
 
Pen said:
HI Ricky I understand you want to get people's information but they wont give you their full names, it is for privacy reasons, might be better for YOU to tell us YOUR story in detail?? Fair enough? There are some that will help you, but you must understand that you cannot come on here expect other Crohn's memebers to jump on this right away ok? But you are welcomed to the forum.
Click to expand...
I second that.
 
My Butt Hurts said:
Yup - rsc07c flew the coop.
All that smart-assing around made him leave. And it wasn't even ME this time!
How do you feel about that JED?
(tee-hee)
Click to expand...

wasnt meeeeeeeeeeeeeeeeee, i is a good boy!!!!!!!!!!!!!
 
I would like an explanation on exactly how two distinct Dx's, that are mutually exclusive (UC and CD), can overlap in a single patient, simultaneously. I've been told by numerous GI's that one cannot have both, it's medically impossible, you either have 1) CD, 2) UC, or 3)neither....

Not trying to sound pompous, I would just like an explanation, one of the top GI's in the region, is my current GI, and he's the most recent GI to tell me this. He presents abstracts and scientific data at national conferences, so I continue to just believe the other's and his word until I get my "discrediting proof." I know science has its mysteries and abnormalities, and IBD is a big one, but this is one area all my own research and advice is telling me is black and white.

If there is "unspecified colitis" or "indeterminate colitis" then it cannot be both he said, it's just yet to be fully diagnosed. Where is this 2%, and how are they defined/diagnosed?....

I ask so passionately and vigorously only because this distinction is one of the glaring factors in IF I should get a colectomy or not in the coming months. :(

And to the original "student" or what-have-you, if you have Crohns, why not answer it yourself? Do you require an independent response? It's just a bit troubling. I checked this thread too late, so I have no clue if you're even returning or what your original question was due to your edit, but looking now, it sounds sketchy at best.
 
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BWS,

Believe me I was dumbfounded when my GI (Dr. Remo Panaccioni) told me that it was possible for one patient to have both CD and UC, but it is so rare, 2% and that is pretty low...reason being is yes they are both an IBD but because they do have some differences (including genetic differences) that's enough for them to be considered 2 seperate diseases yet because they are both inflammatory diseases of the intestines they term it "umbrella".

You also have to realize that so much more still needs to be learned about both CD and UC and even IBS actually.

Here's Dr. Remo Panaccioni's email....ask him to explain it better if you're still not satisfied....

[email protected]



:)
 
Well I knew IBD was an umbrella term, and the level of inflammation (depth of ulceration, etc...), location, antibodies, and other variables are what can seperate them. Because there is so much mystery around the 2 still, this is why I was told that there is a cloud of "indetermination" and vaguary, where those "unspecified" ones come, but that I could only have one or the other. I wish I had a clear cut diagnosis in my head, but on paper, they've been pretty concrete it seems. UC was in question a couple times, but Crohns was finally etched in stone with the new GI.

Don't take it as disrespect, but as long as you know he won't mind, I'll email him for info. I see information as the only ammo I can wield against this damn disease right now. :)

Thank you.
 
I suppose you could have the top layer blanket inflammation of UC in the large intestine and deep ulcerations of CD in the small.

It took the doctors years to decide which of the two I had.
 
I have no clue if he'll mind (and why would I be disrespected?) he has his email at the university of Calgary website or what ever then far as I'm concerned anyone can email him.

Just my opinion but I think many of the "average to not so good" GI's that are still learning or are just clueless are the ones that have an easy time DX a patient as being indeterminate, that may sound rude but I don't care really, I've been screwed over by an idiot colon and rectom surgeon so I feel I've got the right to that opinion.

I know biopsies are suppose to be a definite way in determining either CD or UC, but you also have to consider maybe those that are DX with indeterminate are the ones who do have both CD and UC...as I've said many times, this disease is ignorant and honestly either CD or UC suck, let alone having both or having IBS as well...basically same shit different pile.

I also know that there are distinctive characteristics between CD and UC....

with CD the inflammation can affect the many layers of the intestinal lining, with UC it's surfaceable only and that's why fistulas are more common with CD and not UC...also, there are skipped patterns of inflammation with CD (there are healthy tissues in between inflammed) with UC the entire area will be inflammed.

:)
 
Well I am generally tired of people thinking that this doctor or that doctor really knows the truth about this or that. Practicing medicine is an art form in my opinion. And just like artists there are a few exceptional ones with a whole lot of decent to mediocre ones. We learn new things about our bodies and medicine all the time. And since I have been dealing with doctors for most of my life I have come to figure that they really don't know much more than I do, or more that I couldn't find out for myself.

To Benson - why would you think it impossible to have both UC and CD if they are in fact two different disease. Can you get a cold virus and a flu virus at the same time, of course you can they are both viruses but two different ones. I have an EXTREMELY rare heart cyst and a rare blood disorder - the fact I have both would be like a .000009% chance or something. Logically it doesn't make sense that it is an either or. A tumor is either cancer or benign. It just doesn't make sense that you can't have two different disease, regardless if they fall under the same "umbrella."
 
My reasoning for the mutually exclusiveness to it is because I've read and was told many times that having one precludes the other. They keep telling me (by the way, I never had such an easy diagnosis, I've most of the time been Crohns, but because the inflammation is so solid without healthy patches lately and only in the colon, UC is still a possibility they say, but antibodies and all....) that they have to give me one dx or the other. It's not like the flu/cold virus is what I'm told/reading....it's that I'm finding from all sources and whatnot, that they can be confusing, but that you can't have both based on the fundamentals of each.

I guess I'll never know, because the more I look into it, I get more and more answers going both ways, they're all telling me I can only have one or the other, and I keep seing a few people here saying they know they can coexist. I'm ready to tell them to cut the f****** thing out so I stop getting different answers.
 
They have yet to confirm which one I have, though I think it is Crohn's I have skipping patterns of inflammation. It is only in the large intestine though so I guess that's why they won't make a decision...really annoying. I don't know why, but I want to know for sure which one.
 
teeny, if you have skipped patterns of inflammation then it's crohn's colitis you have which is simply CD affecting the colon...col=colon, itis=inflammation. And that is not a good enough reason for them to not make a decision, UC will have the entire area (not necessarily the entire colon as that's referred to as pan colitis) but the entire area in UC will be inflammed with no skipped patterns. And this is easy enough to tell for them via colonoscopy.

I too have crohn's colitis, but my CD is also affecting my anus with perianal crohn's skin tags and 17 yrs back when I first got sick it was also in my ileum, colon, rectom and anus all at the same time.

:)
 
BWS, email Dr. Remo Panaccioni and enquire with him...although I have a feeling you still won't like the answer even though he's a top researcher in Canada for crohn's and colitis.

:)
 
pb4: This is what I figured that it is Crohn's Colitis. Have no idea why they won't just say Crohn's, my GI now said that he didn't do my colonoscopy so he doesn't want to commit to a diagnosis just yet...seems dumb! Hello...he said that after explaining it had a skipping pattern. I saw the pictures and it looked pretty clear to me. So for myself I am saying Crohn's-my general practitioner thinks so too (at least he is willing to commit to it!).
 
The way I've always thought of it was that IBD is the umbrella term for inflammation of the digestive tract. Crohn's and UC and Ileitis and Crohn's Colitis and all the other specific terms were just that: more specific names for the type of IBD. If the inflammation is only in your Colon, then it's UC, and the same for all the others. I think it's just trying to differentiate the variety of ways IBD can present itself. I have no idea if this is right or not, it seems like everyone is a bit confused, but that's my way of trying to make sense of it all.

In a similar vein, I think that I have ONE autoimmune disease, but it's manifestations have been diagnosed as Crohn's and RA. I think it's all the same disease, instead of having 2 separate ones. Again, I don't know if this is the right way to think of it, but I really don't care. It's too confusing.

So for everyone with weird diagnoses like "Crohn's Colitis," or "UC/Crohn's," do you think it's all the same disease and it's just being identified as both things? Or do you think you have two distinct diseases?
 
RHOV said:
The way I've always thought of it was that IBD is the umbrella term for inflammation of the digestive tract. Crohn's and UC and Ileitis and Crohn's Colitis and all the other specific terms were just that: more specific names for the type of IBD. If the inflammation is only in your Colon, then it's UC, and the same for all the others. I think it's just trying to differentiate the variety of ways IBD can present itself. I have no idea if this is right or not, it seems like everyone is a bit confused, but that's my way of trying to make sense of it all.

In a similar vein, I think that I have ONE autoimmune disease, but it's manifestations have been diagnosed as Crohn's and RA. I think it's all the same disease, instead of having 2 separate ones. Again, I don't know if this is the right way to think of it, but I really don't care. It's too confusing.

So for everyone with weird diagnoses like "Crohn's Colitis," or "UC/Crohn's," do you think it's all the same disease and it's just being identified as both things? Or do you think you have two distinct diseases?
Click to expand...

I have Crohn's colitis. It's Crohn's-like skip-lesions occurring in my colon only. Inflammation in the colon only doesn't mean UC.
 
Well think of the term, Allergies. It can effect only your eyes, only your nose, only your lungs. You can have allergies and asthma that effect the same area. You can have allergies in many areas. Is an allergic reaction different then any other one -not really. There are different locations, different manifestations, and different severities - but they are all allergies.

We all have IBD - Inflammatory Bowel Disease, UC and Crohns are different manifestations with different treatments....

You wouldn't treat an allergic cough with eye drops meant for allergic reactions in your eyes? But can you have both an allergic reaction in your lungs and your eyes, sure can. Still have allergies too :)
 
This again, is stuff I already knew, I'm labeled currently with 'Crohns Colitis' because of location, granulomas, ulceration pattern, labs, and tests, as well as collective medical opinion. I'm not sure why the "IBD, umbrella term, etc..." stuff changes the facts that I was aware of already, I knew how it broke down into subcategories. When I get the chance I will look into the UC w/ CD issue more. Actually, I'd really like this Canadian GI to sit down with my GI and argue it out, not that they're the 2 greatest in the world, but that they have drastically different views on a rudimentary concept and it's pissing me off that I may lose my colon simply because of semantics.
 
My response was to RHOV - which now that I think about it, don't know what it stands for!
 
I thought that Inflammatory Bowel Disease was the term that included all inflammatory bowel diseases (duh), including Crohn's, UC, and everything in between. If someone has a manifestation of IBD that doesn't fit the parameters of Crohn's or UC, would they get one of the in-between names like Crohn's Colitis, or Ileitis (I can't think of any others right now), or would they simply be diagnosed with IBD? IBD is really nonspecific, but Crohn's, etc are not.
 
Well again, take allergies - there will always be a subcategory. There is a term called indeterminate ibd - which means they cannot determine what form or manifestation of IBD a person has. No matter what form it is always IBD, IBD is not a disease itself but rather a category of diseases. Cancer is another category and we all can fathom how many types there are.

Does that help?
 
I kinda knew it was not directed at me, I was just babbling, I think, because PB4 stated some things in response to me as if I didn't know them yet. I was speaking out in the context of "thinking out loud".

To something though that RHOV said, UC is really a bit different than Crohns, or Crohns Colitis. Crohns Colitis is really a subcategory to Crohns that specifies location of the Crohns. Proctitis and Ileitis are other IBD's under the umbrella with Crohns and UC.
 
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i know, i know.... i'm not conveying my thoughts very clearly. Argh, i'm tired.

i do understand the difference between uc and crohns colitis and i know that there are other forms of ibd that affect only the colon, not just uc... i'm pretty sure i get it. i just wanted to know if other people interpreted ibd and all the different diagnoses the same way.

i should shut up before i dig myself into a deeper hole.

need sleep.
night night.
 
Here, maybe this will help....

There are five subtypes of Crohn's disease, distinguished by the gastrointestinal area in which the disease occurs. While Crohn's disease lesions can appear anywhere in the digestive tract, lesions rarely occur in the mouth, esophagus, and stomach unless there are also lesions in the lower parts of the tract (intestines).

* Gastroduodenal CD - Gastroduodenal Crohn's disease, which affects the stomach and the duodenum (the highest, or beginning, portion of the small intestine), is often misdiagnosed as ulcer disease. The correct diagnosis frequently is not made until various ulcer treatments have failed, or until Crohn's disease is identified farther down the gastrointestinal tract. Symptoms of gastroduodenal CD include loss of appetite, weight loss, nausea, pain in the upper middle of the abdomen, and vomiting.

* Jejunoileitis - Jejunoileitis is Crohn's disease of the jejunum (the longest portion of the small intestine), which is located between the duodenum and the ileum. Symptoms include mild to intense abdominal pain and cramps after meals, diarrhea, and malnutrition caused by malabsorption of nutrients. (The majority of nutrients are absorbed in the jejunum.) Fistulas (abnormal openings in the intestinal tract) may form. These can link a diseased area of the small intestine to another area of the intestine or another organ, such as the bladder. Fistulas may increase the risk of developing infections outside of the GI tract.

* Ileitis Crohn's disease of the ileum, the last portion of the small intestine. - Ileitis affects the ileum (the lowest, or last, part of the small intestine). Symptoms include diarrhea and cramping or pain in the right lower quadrant and periumbilical (around the bellybutton) area, especially after meals. Malabsorption of vitamin B12 can lead to tingling in the fingers or toes (peripheral neuropathy). Folate deficiency can hinder the development of red blood cells, putting the patient at higher risk of developing anemia. Fistulas can develop, as can inflammatory masses.

* Ileocolitis Crohn's disease of the ileum and the first portion of the colon, which usually involves the ileocecal valve as well. - Ileocolitis is the most common type of Crohn's disease. It affects the ileum (the lowest part of the small intestine) and the colon (the large intestine). Often, the diseased area of the colon is continuous with the diseased ileum, and therefore involves the ileocecal valve between the ileum and the colon. In some cases, however, areas of the colon not contiguous with the ileum are involved. Symptoms of ileocolitis are essentially the same as those present in ileitis. Weight loss is also common.

* Crohn's Colitis (Granulomatous Colitis ) - Crohn's colitis affects the colon. It is distinguished from ulcerative colitis in two ways. First, there are often areas of healthy tissue between areas of diseased tissue; ulcerative colitis is always continuous. Second, while ulcerative colitis always affects the rectum and areas of the colon beyond the rectum, Crohn's colitis can spare the rectum, appearing only in the colon. Inflammation from crohn's disease can affect the many layers of the intestinal lining, inflammation from UC is always limited to the surface of the lining always, never goes beneath the surface layer as it can with crohn's disease.

:)
 
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I dunno RHOV, I think I was just trying to state a few facts, but at the same time not state that you don't know the facts, just making a statement rewording what you stated in my own words. I'll just be happy if I ever see the word cure and it's not preceded by "no" when they describe it.
 
I'll email him when I get a chance, but that just talked about distinguishing the two, "colitis" simply means "inflammation of the colon" when translated, and can even be from a simple infection or side effect to a medicine, as you know as well. UC is a specific form of colitis, as is Crohns Colitis. One of my topical creams Duac I think it was, for acne, had the side effect of "colitis" in the information sheet. Thank you for the info again though, I'm trying not to sound arrogant, the reason I said before not to take offense is because I don't want to come off as being pompous and all-knowing.
 

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