Who do you trust... who do you believe?

[tots]

I have not achieved remission yet after 6 months of Entocort and three
doses of Remicade. I have Crohns in the large and small bowel.

Spoke to a family friend who is a Dr. (why Lauren, why did you do it?). He said Crohns is never Dx with an xray. Only with a colonoscopy and Bx.

I was Dx though a small bowel series after one week of prednisone in my IV.
My lab work indicated an inflamitory process. I responded to the prednisone in the hospital. Tested negative for all other infectious agents.

He did say if indeed I did have CD, that now affects my lrg bowel I need to be on prednisone (Entocourt does not cover your whole lrg bowel), a low dose of 6MP and stay on the Remicade. If... if I have Crohns.

I am mad!! :voodoo: I don't want to beg for a diagnosis- I don't want to bully anyone into a diagnosis. I just want to believe in the one I was given 21 friggin years ago and stay with it.

Seriously- I feel like going off all my meds- getting sick ALL over again and starting again. But- why should I ??

I don't know emotionally if I can handle anymore wishy washy Drs- and I JUST WANT TO FEEL BETTER!!

 

[Gculk]

Hey,

Hope I can help. I'm always a bit on the hard side, just my way I suppose. Don't take this the wrong way at all, though my manner never comes across properly over text, I am sympathising with you.

Yeah, Crohn's is known to be a bitch. There's a reason for some people they've gotta reach in and lop out a bit of guts to acheive remission. Even then sometimes it doesn't work. Sucks, but going off your meds and getting yourself sick again, well, if the medicine is doing ANYTHING, it will just allow the inflammation to set in again and you're starting from square one.

As for diagnosing by 'x-ray' well, Small Bowel Follow Through is a bit more high level than a standard kiddo's got a boo boo x-ray. As far as Colonoscopy and biopsy, great, so how do they diagnose it in the center of the small bowel, where scopes can't reach. Sure it is never as solid as popping the tube up your but and hauling out some granulomatous skin, but on plenty of people those same biopsies, of bleeding ulcers, will show nothing. Read the stories.

It's a bitch to diagnose, it's a bitch to treat.

And, man I know, makes me mad too, for half a second every time I'm almost taken off my feet from a stab in the guts, or when I can't bear the thought of eating cause I've got no appetite. I'm not even bad, and I'm the most patient dude you'll ever meet, but I get pissed!

So man, go get a second opinion! You'll still be pissed, won't change that, but you'll feel like your getting something done. Ask about your treatment regimen if you have issues! A doc that can't take being questioned, well, that's not a doc I want treating me.

Seriously though, gotta take care of yourself, nobody else can.

I really hope you can get to feel better. Or if not, at least get some solid doctors on your side.

Take care mate,

Nathan

 

[tots]

Nathan -

Thanks for the reply!

I think I am a bit like you- straight up!

Kinda need to get my head straight!

Lauren

 

[Jennifer]

Trust yourself. You know better. I hate it when I know more than my doctor and have to educate them and I hate it more when they say I'm wrong and stick with their own stupid "knowledge." Sometimes we gotta keep shopping around for doctors who aren't completely retarded.

FYI, a small bowel series helped diagnose me 21 years ago so that doc you just saw can shove it!

Sounds like you're affected in the same area I am (or was before my resection). I responded well to Asacol, Prednisone, Entocort and 6MP. Sometimes flares get out of control though where meds just aren't doing the trick anymore (that's why I had my resection and am only taking 6MP now as maintenance. The 6MP still works, things just got out of hand).

Do you know if you're dealing strictly with inflammation or is there something else going on? Were you ever on anything else before Remicade? I've always wondered why people are put on Remicade and Humira and the like before trying other meds like Asacol or even 6MP (if you're nearing surgery then I can understand to nip it in the bud right away but if its not that bad?).

A short course of Prednisone may help since its worked in the past and the Entocort doesn't seem to be working but as far as other meds go, its all trial and error (so are doctors unfortunately).

 

[kiny]

Spoke to a family friend who is a Dr. (why Lauren, why did you do it?). He said Crohns is never Dx with an xray.

he's right though

 

[tots]

Kiny

I just was in the CCFA (?) site.
They said you CAN be Dx with just
the barium xray.

Crabby-
I am going to ask my Dr for a short course of Prednisone, and add the 6MP to my list.
Do you have any side affects from it?

Lauren

 

[Jennifer]

No tots, I've never had any side effects from it. I hope it works for you as well if you do decide to try it.

 

[kiny]

Kiny

I just was in the CCFA (?) site.
They said you CAN be Dx with just
the barium xray.

I can only say that my doc said the exact same thing as yours, diagnosis is done with colonoscopy with biopsy, not with xray, not with blood tests, they're simply there to help the diagnosis, but to differentiate between crohn and other diseases you need a biopsy. That's what he said and that's what his team says. Why would doctors do biopsies if all it took was an xray? A biopsy and testing costs a whole bunch more than an Xray, if there was no reason to do it they wouldn't be doing it.

Here's some examples what happens if they are wrongly diagnosed, they too had colonoscopies and xrays. The secondary finding are through biopsies , the biopsy is to avoid these mistakes.

 

[Jennifer]

Colonoscopies and endoscopies do not venture into the small intestine (as mentioned above). If your disease is only active in the area that the scopes can't reach (the ileum is an extremely common area affected with Crohn's and cannot be reached by a scope) then all the scopes are going to do is rule out that you don't have active disease in the upper and lower GI tract. All other tests help with diagnosis of the small intestine and reinforce the diagnosis of the upper and lower GI tract where the scopes can reach.

You know, maybe I'm blind Kiny but I don't see any other tests listed besides colonoscopies and looking at the biopsies in that table you shared.

Since there are obviously so many illnesses that mimic Crohn's, that's why more testing is done besides just fecal and blood tests, x-rays with contrast and scopes. There are so many other tests out there. Both you and the doctor want to avoid misdiagnosis and avoid situations where the patient may die. If you ever don't feel comfortable with the diagnosis then get a second opinion (or third or fourth if you need to). Just keep in mind that if you are given a diagnosis that requires treatment then you may need to try that treatment while you seek out another opinion (don't want to be like patient #1 in that table above).

 

[nikimazur]

For me, it's hard to trust any one but myself when it comes to my health. It is extremely frustrating, partially due to the complexity of IBD, but it seems like each doctor has a somewhat different protocol, whether it comes to diagnosing or treating the disease. It makes the disease about a million times worse. We trust our doctors with our lives at stake, yet at the same time could potentially kill us in a second. I've learned to be cautious when accepting new meds, new testing and just to research the crap out of things when it comes to it. I have a graduate degree in public health and epidemiology studies, and even with that, I still can feel lost at times.

 

[tots]

Kiny

I am not saying you shouldnt have a colonoccopy and Bx. They rule out all sorts of things. But, they can be negative and you can STILL have Crohns. Hence the thickining
in the ileocecal valve on a small bowel series. It too is a diagnostic tool.

Thanks for the above information

Lauren

 

[tots]

Crabby-
Thanks for the answer on the medications.
I feel like I get a better responce from my Dr if I go
in and I ask him very specific questions. So I look for
info everywhere I can and trust!

Lauren
:Flower: