Long-time sufferer, newly diagnosed

[Busy]

Hello. After 9 years of having IBS I have had a diagnosis this month of Crohn's Disease. This came about because I asked my GP to refer me to the Gastro-guy (super-hero) because I realised that the whole time I had been on Humira and Methotrexate (for Psoriasis and Psoriatic Arthritis) my 'IBS' went almost completely away and I was able to plan my life normally. 5 months ago I stopped the Humira/Methotrexate and the 'IBS' returned along with my PA and Psoriasis.

I looked on the net and found that Humira was also used to treat Crohns and so I dug a bit more and began to wonder.

The Gastro-guy seemed fairly confident that I had Crohn's at our first appointment. I had a blood test, a gastro-thingy (camera down my throat into my tummy) and an upsidedown gastro-thingy (you can guess where that one went!). I was shown pictures of inflamed areas. I then had to have a barium x-ray. At the x-ray appointment I began to think that maybe I didn't have Crohn's after all because the barium meal affected my tummy terribly! It was not a nice experience and their toilets were directly off of patients' waiting rooms :S The doctor doing the x-ray told me that usually the barium had the opposite effect.

Anyhoo, at my next appointment with the Gastro-guy I was given the diagnosis of Crohn's. I started back on Humira today (without the methotrexate), and here I am... saying Hi. :kello:

 

[Regular Joe]

Welcome busytucker.

I see you got the "Bargain Package" where you got two free autoimmune disorders for the same price.

Seriously, any autoimmune disorder is not a funny or joking matter, but sometimes I just make light of it. What is great in your case is that a single biologic treats all 3 disorders. I hope Humira brings everything under control.

But on another sour note, I'd like to start my rant...

Don't tell me: you have an IBS diagnosis because none of your doctors could figure out what was wrong in your gut? ROME II and ROME III to them were ancient fallen civilizations, I suppose?

Is Cleveland the only place on the planet that knows how to diagnose IBS and not get it mixed up with IBD or other autoimmune disorders? I have a cardiologist, an orthopedic surgeon, a cardio-thoracic surgeon, a rheumatologist, a neurologist, and primary care doctor who all told me "You probably have INFLAMMATORY BOWEL DISEASE." The same chorus line BEFORE I got the official diagnosis from my GI. Is Cleveland the only place on the planet where "autoimmune symptoms" do not in any way equal "IBS".

If you have IBS in Cleveland, you REALLY HAVE IBS. I have IBS in addition to Crohn's Disease. I got the IBS diagnosis in the same colonoscopy where I got the Crohn's Disease diagnosis. It made total sense to both my girlfriend and me. We're from Cleveland - you know - that midwest town where people have IBD and IBS, sometimes at the same time?

I've become so irritated that so many of you talk like IBS is some kind of "second class" diagnosis (I know its not your fault) where nothing remains but "mystery gut symptoms" that get treated with a single generic anti-spasmotic prescription of Bentyl, and "Immodium" - well I had to figure out if I was on another planet! I never thought much of having an IBS diagnosis until nearly everyone here "dismissed" IBS as if it were nothing.

Here in Cleveland, IBS is considered a "chronic disease" with no known cure. There are at least 6 known "pathophysiological" conditions beleived to be originating sources of IBS, along with at least 13 medications used in conjunction with 5 distinct treatment protocols based upon "co-morbid" patient conditions. If you are being treated by a physician who can't give you a sensible IBS diagnosis based on widespread medical fact, then you may be receiving treatment that is not only "quackery", but even dangerous to someone who actually has an IBD condition. Certain IBS treatments are contrary and even harmful to someone with Crohn's Disease.

Anyway, sorry for getting off-topic. But I'm getting a little fed up with the carelessness many of you are facing from your medical communities. The doctors around here would be out of business if they handed out IBS treatment as they do with many of you, like 75-cent stack of "Rolaids". Incredible!

Welcome again.
Joseph

 

[Crohns08]

Welcome to the forum busytucker! Sorry to hear about a slow diagnosis and that you have two other autoimmune conditions. At least now that you have a diagnosis you can look through the forums and figure out what works for you and what doesn't. I whole heartedly reccomend keeping a food journal that way you know what does and doesn't irritate you so you don't ever have repeat offenders.

 

[Astra]

Hi Busytucker
and welcome fellow Brit, where are you?

Sorry you're a crohnie, but also glad that finally, you have a dx and now know what you're dealing with, hope you stick around, and enjoy the forum, good luck with the Humira too!
lotsa luv
Joan xxx

 

[Astra]

Hi Joe

Sorry about this, but feel quite incensed to say something here, and altho your intentions are highly honourable, it sure looks like your having a pop here at someone else's expense, I believe that if you feel so highly aggrieved about the differences of IBS and IBD, then start your own thread, like I did, which you can read, it's a great debate, and don't hi-jack someone eles thread!
PEACE!

 

[Busy]

Thank you both for the welcome

Joe, there is a long story behind my IBS diagnosis, too long for here and in no way do I think of IBS as anything other than a serious chronic disease, remember, I thought I had it for many years and from my symptoms there didn't seem to be any reason to doubt it was IBS . My problem was that the treatment I was given for IBS just didn't help, and that was likely to be because it wasn't IBS but Crohn's. When they gave me Humira in the first place it was for PA and Psoriasis...

And I also have an underactive thyroid. Isn't that auto-immune too?

Crohns08 - thank-you for the tip about the food journal. There are foods that I absolutely steer clear of already, but I'm pretty sure that sometimes a combination of foods cause problems, even if the individual foods themselves are ok. A food journal might be just the thing.

Hello Joan!

Sorry, I had to edit this post to put this bit in as I must have been writing while you were posting. Thank-you too for the warm welcome. It's good to find a support community and I hope that I can be part of it. *hugs*

busy.

 

[Regular Joe]

Hi Busytucker,

I don't think I said it right, so I apologize. My comments weren't directed at you or anyone, rather the situation and not even the "debate". I get nerved-up when hurting people get treated like numbers, or get told "there's nothing we can do".

Your's is a different story, because what you had "looked like a duck" to them. So Crohn's Disease was sort of an "incidental" discovery because of your other autoimmune conditions? But your research must have also contributed to finding the culprit - at least aroused your suspicions.

I hope that restarting Humira will bring your CD under control, along with the other conditions.

I certainly wanted to let you know that I wasn't trying to be critical of your conditions, or being rude with you or anyone on this forum. Sometimes my words don't always come out conveying what I tried to communicate. Sorry again to you and all.

Once more, welcome!

 

[Astra]

Thanks Joe
MWAH!
xx

 

[Crohn's 35]

Welcome busytucker!!! Alot of doctors use the IBS for a dx because it is so confusing and hard to diagnose especially if they dont see inflammation or the biopsy is negative. I had a years worth of test and pain and it was just a chance of me getting mad and going to another hospital for help. I am on methotrexate too but not doing so great on it and Humira peter'd out on me, but we all have to do the trial and error thing. Sorry you have Crohns but better to know that you do so you can deal with it. Glad you are here, lots of good peeps here, hang in there!

 

[Keona]

Hi busytucker!

Welcome and I am glad you found the forum Gastro-thingy...haha...funny

 

[DustyKat]

Hi Busy,

Welcome to the forum. Hope the Humira works for you - sending you lots of luck!

And I also have an underactive thyroid. Isn't that auto-immune too?

It is one of the more common causes of hypothyroidism.

 

[Dexky]

Hi Busy, Welcome. I'd always listen to Joan and Joe if I were in your shoes...just sometimes not at the same time.

 

[Busy]

Heh heh, ok thank-you for that advice Mark, I shall bear it in mind!



busy

 

[Crohn's 35]

Hi Busy, Welcome. I'd always listen to Joan and Joe if I were in your shoes...just sometimes not at the same time.

:lol2:

Uh oh, I just noticed busytucker has an avatar! ^..ok guys calm your homones lol... :yfaint:
:lol2:

Welcome again busy, keep us updated!

 

[Busy]

Thank-you for the welcome Jettalady... and the giggle!

busy x

 

[Astra]

ha ha that's where we're at!!
xxxx

 

[Regular Joe]

Oh yeah...

Well I'll just shut-up because they know my secrets here. At least Joan does...

 

[Astra]

Oh ha ha ha ha - so funny!

 

[Nancy Lee]

Hi Busytucker...just stopped in between the giggles to welcome
you to the Crohn's Forum.

Relax, have a look around and enjoy your stay.

Welcoming hugs~Nancy

 

[ameslouise]

Hi Busy - Welcome to the forum - hope the Humira works well again for you!

-Amy

 

[Busy]

Hi Nancy, Amy, Dusty and Keona (hope I haven't missed anyone) and all of the above!

I don't think I've ever had such a warm welcome anywhere on the net before and I thank you all for it. It means so much to feel welcome especially when we're in trouble health-wise.

I've spent some time lurking around and reading up on the forums and it's really made me have a rethink about my CD. When I arrived I felt very sorry for myself but now I realise that I'm nowhere near as ill as many of you are and/or have been and it humbles me to see such support, patience and humour amongst you.

Really glad to have found this place!

busy x

 

[Guest]

hi Busy, welcome to the forum

we're glad to have you here too!

anything you need help with, just shout. looking forward to seeing you around the forum

 

[Astra]

Hey we can't keep calling you busy!
so what's your name huni?

 

[Busy]

Hi Joan, my name is Tracy but I have no problem with busy, it's kinda what I am x

 

[Astra]

Oh yeah, that's me too!
like a bee on acid!

 

[RollinontheRvr]

Welcome Tracy...

I am new here to and find that the folks here are funny, crazy and helpful plus a hole lot of other stuff all rolled into one big happy package. I, like you, feel lucky at the point I am at and I find that the stories here help me realize that life is not over. Hope you have a good time here and find what you are looking for.