Hey guys, so I thought I had a diagnosis of CD back in March....so Ive been taking my meds and have had ups and downs....but finally been feeling well. Im not so exhausted everyday....only some days. My fatigue is gettin better, but still suffer some days. So I was totally pumped to go to GI today to hear what the next steps were. I was totally expecting to be taken off some of my meds....well I was expecting wrong!! I feel like screaming my head off at my GI....I have a colonoscopy on Weds, and he said he wants to keep me on all my meds until after the procedure....maybe a few more weeks. WHAT THE F&*K??? Im feeling good, I want my life back.....why?? He said the cscope can send some people into a tailspin and he doesnt want to take me off my meds with a chance of that happening.....and then have to put me back on a higher dose for longer.....WTF??? Does this make sense?? He still is presuming CD.....Im completely lost. I dont understand, I either have it....or I dont. How can I be told I have it, put on all this medication....get better on meds, and then be told thier not sure if I have it?!? Hello people, is this just a guessing game, what in the world is going on? Im so pissed, Im so lost, and Ive just about had it. Before when I got sick, I would take pain pills for a week, sleep all week, and wake up fine.....why cant I do that now?? I mean...this episode has been the worst ever, but come on....the stress of them guessing and telling me one thing, and then telling me they are not sure.....is enough to make me sick. GOSH!! So he is planning on taking a BUNCH of biopsies and then comparing them to my previous biopsies to see what he finds. Im so lost, and frankly think if its all a guesing game, then Im in the wrong profession.....LOL. Sorry for my rant, Im just so over it all. :kissgrits:
So flippin tired of all these docs just guessing
- Thread starter BLM
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I'd be frustrated by not having a complete diagnosis too but you must understand that crohns can be very hard to diagnose because there are other conditions with the same or similar symptoms. Its better to be sure than to just say you have something that maybe you don't and sadly to diagnose there is a lot of guessing going on. Its also good to know that even if you're feeling well, that doesn't mean you're fully healed on the inside. That's the huge bummer about crohns is that you can't see it. People around you think that you look fine but if they could only see your guts... 
So far it sounds like you GI is making the right decisions with keeping you on the meds until after they see what's going on on the inside and keeping up the meds for a bit after wards just in case. I know its frustrating, just hang in there.
So far it sounds like you GI is making the right decisions with keeping you on the meds until after they see what's going on on the inside and keeping up the meds for a bit after wards just in case. I know its frustrating, just hang in there. 
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I feel for you, but the meds are likely the reason you are feeling better, so it is likely best to stay on until your doctor says it is safe. It is a long frustrating process, so just try and stay patient and enjoy the fact you're feeling good at the moment. Good luck with the colonoscopy!
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Hey Bev,
Wow eh?.... talk about frustrating...I would be too (what am I saying...I AM)..... I'm not on medication for Crohn's yet but are they really that bad? I don't know but Im thinking maybe I dont want to go on any!!
I am glad to hear you are feeling good but what if he is right and if you stop, have your colonoscopy and then your body reacts neg. to it? Sounds like the meds are a safety net for now. I hope you can come off them soon
I sort of do think it is a guessing game in some. Me for example, how can he diagnose me with Crohn's with just strictures on an MRI ? He hasn't taken a biopsy.
Not knowing FOR SURE is very frustrating... I hear ya!!!
Good luck on the colonoscopy ... you will be closer to the definitive answer!!
:hug:
Wow eh?.... talk about frustrating...I would be too (what am I saying...I AM)..
... I'm not on medication for Crohn's yet but are they really that bad? I don't know but Im thinking maybe I dont want to go on any!!I am glad to hear you are feeling good but what if he is right and if you stop, have your colonoscopy and then your body reacts neg. to it? Sounds like the meds are a safety net for now. I hope you can come off them soon
I sort of do think it is a guessing game in some. Me for example, how can he diagnose me with Crohn's with just strictures on an MRI ? He hasn't taken a biopsy.
Not knowing FOR SURE is very frustrating... I hear ya!!!
Good luck on the colonoscopy ... you will be closer to the definitive answer!!
:hug:
Astra
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Hiya Bev
I totally understand where you're coming from, but you might also have to resign yourself to the fact that you might have to take meds for the rest of your life whether you're in pain or not. I see you're on Pentasa, This is to maintain good remission, to keep your guts healthy and to protect from future flares. I've been on this for 5 years. Entocort is a mild steroid, it has probably blitzed your current inflammation and helped the healing process. Read about these meds on the treatment threads to put your mind at ease.
It's not just about whether you're better now and pain free, inflammation can just suddenly come without warning, these cause strictures, these cause narrowing, and before you know it, you're blocked.
Do yourself a favour, listen to the specialist, and take the meds he prescribes, it'll be worth it in the long run, honestly, take it from 'an old Crohnie!'
love lots
xxxx
I totally understand where you're coming from, but you might also have to resign yourself to the fact that you might have to take meds for the rest of your life whether you're in pain or not. I see you're on Pentasa, This is to maintain good remission, to keep your guts healthy and to protect from future flares. I've been on this for 5 years. Entocort is a mild steroid, it has probably blitzed your current inflammation and helped the healing process. Read about these meds on the treatment threads to put your mind at ease.
It's not just about whether you're better now and pain free, inflammation can just suddenly come without warning, these cause strictures, these cause narrowing, and before you know it, you're blocked.
Do yourself a favour, listen to the specialist, and take the meds he prescribes, it'll be worth it in the long run, honestly, take it from 'an old Crohnie!'
love lots
xxxx
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I feel all your pain ...it realy sucks...I had to flip out on my doctor the other day to get some answers..and eventualy changed doctors....I told him that now i know why they call it praticing medicine...but you aint practicing on me...
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