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Crohn's Disease
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Posted 10/24/2007 8:17 PM (GMT 0)
Has anyone noticed that you start secretly wishing the tests would show something so we can start treating it or it just me?  I've been dealing with tailbone pain, fever and fatigue for almost 2 months now.  I've had 2 x-rays, a CT scan and I go in for a MRI in the morning.  I don't want to be told they can't find anything again.  But I also don't want to be told I have something else I have to deal with like AS.  Sometimes I just want to curl up in a ball and let the world go by.  Well, just for a little while.
Posted 10/24/2007 8:35 PM (GMT 0)
Wow, are we ever on the same page. Have you gone to the gyno yet about it? I am waiting to hear back for an appointment. This is just the most annoying thing ever. Just fix us already!
Posted 10/24/2007 9:47 PM (GMT 0)
oh lord, yes. I would give anything for an answer right now. just find it and fix it or remove it, I say!
Posted 10/24/2007 9:50 PM (GMT 0)
Didn't know anyone else thought that way too. I do every time I go to the doctor because I feel like so much crap and they are like we don't know what's causing your pain..I think to myself sometimes well FIND it then!!! Shewwwww....We will get through this though!
Posted 10/24/2007 9:58 PM (GMT 0)
Hi rubixqueen, I've noticed we have parallel lives. I'm so sick of this. What did your CT scan find again? They found a possible ovarian cyst and kidney stones but nothing else wrong. Nothing wrong with the guts. I'm hoping we find something tomorrow. If not I'll call my PCP. She is an internist and deals with everything but my Crohn's. She'll know the next step to take. I did just have a women's exam 2½ months ago though.
Posted 10/24/2007 9:59 PM (GMT 0)

i feel your pain. my cd is comfirmed and all that but i have neurological symptoms that no one can pinpoint where they come from. its all the symptoms of MS but i dont have lesions on my brain or spinal cord. i just want to know what the he** it is. so i know exaclty what you are talking about.

bunny

Posted 10/24/2007 10:05 PM (GMT 0)
I know, we are linked Vicky! The nurse said something about calcification on an ovary. The guts show thickining but that is nothing new. I am not sure what calcification means but she didn't make it sound too bad...her tone anyway. Hopefully I get an appointment soon. Esh, I feel like I should just go down there screaming and cause a scene so they will fix me. The squicky wheel gets the grease you know:).
Posted 10/24/2007 10:31 PM (GMT 0)
I have AS since 1996.
Posted 10/25/2007 3:06 AM (GMT 0)
I have seriously wished they would find something black or white in my diagnosis. That way I could deal with it or go ahead and die! I'm not afraid of death anymore. I'm not afraid of what this disease could potentially do to me either. I do fear for my family because I don't want to be a burden. I just get tired of trying to figure out what angle is going to hit me next. Loss of control. God is telling me He is in control, NOT ME, let go! But my stupid human flesh keeps trying to bargain with him. My spirit tells me again, let go, trust Him. But I continue to doubt His will in all of this. I know I shouldn't be talking of my faith here, and I apologize if I offend anyone. But there are days without Him I wouldn't get through. I have finally figured out that He has given me today, be grateful and do the best I can to make the world a better place. Vicky, I wish you peace throughout your tests. I wish I had an answer for you (for all of you).
Posted 10/25/2007 2:24 PM (GMT 0)

I can relate!  Twice in my life, I've literally ripped out my own IV and stormed out of a colonscopy recovery bed after the doctor has come to tell me - 'Good news!  - I don't see any Crohn's activity - you're just fine'....like yea, well, why don't I feel fine?  

Sometimes I wish I had a voodoo doll and could make my gastro feel exactly how I feel and then I could sit there, all sanctimonious and smug, and say 'Your test results don't show anything - see you in 6 months, sucker!'.


Post Edited (Clcaj) : 10/25/2007 8:41:48 AM (GMT-6)

Posted 10/25/2007 2:53 PM (GMT 0)
Wow I sort of feel lucky. I am actually wishing the tests show nothing. I have been confirmed diagnosis right from the start. My new doc is looking at more aggressive care and i am hoping the tests say I don't need more aggressive.
I do understand the not knowing still though....I have a lot of skin manifestations that no one has understood yet.
If I could have one wish it would be that everyone at least knew what and why they had their problems
Posted 10/25/2007 4:51 PM (GMT 0)
The problem with tests is that they often pick up inconsequential abnormal findings. The more tests, the more opportunities to get diverted from the real issues. I don't think physicians are taught to think anymore. They are taught to order tests. Sometimes problems really need thoughtful contemplation and problem solving, not another test.

It's unfortunate that people experience this disease so differently. It must be very difficult for health care providers to sort out. Findings rarely dovetail neatly with the symptoms reported and so it's always about "on the basis of probabilities" and "differential diagnoses".

I saw a Dermatologist last week about a troubling rash that I've had for at least six years on my face and neck that is getting worse. At one point he mused about doing screening for lupus and in the next breath reminded himself that given my drohn's disease, if it came back positive for antibodies and other markers it wouldn't necessarily mean I have lupus.

I opted not to have the screening done. There is every reason to suppose this is rosacea and little to suggest lupus. If it were just a simple bloodtest it would be all right, but if I get a (false) positive result it will be the start of more tests and more consultations with other specialists. I need less, not more, of the health system in my life at the moment.
Posted 10/25/2007 5:10 PM (GMT 0)
Vicky, you and I have the same pain, as you know we've talked before. Last week while I was on vacation, I fell between two
chairs, as I went to sit down. I landed right on the real sore spot. So, what would normally have been funny, had me in tears
for some time. So yes with this I shall be chasing around hoping to find the answers, and actually hoping to find a big problem!!
So at least all this stupid pain has a name, and hopefully one they can fix!!! But like belleenstein says, I'll probably end up going
around in circles, with a whole bunch of probabilities, and I generally take the route she takes, but this problem has taken away
my rest time, as I can't sit, so I'm P*****
Posted 10/25/2007 6:36 PM (GMT 0)
Bellenstein,

Today, you and I are on exactly the same page! Used to be docs also took little things known as PATIENT HISTORIES which showed how disease(s) progressed, etc. that helped with the DX. Now its just test this, run that test. Negative on this, positive on this test.
The best gastro I ever had, sat down with me & went through my ENTIRE history of illnesses as far back as I could remember. CD from my Life History, along with the scope that was positive for IBD..


Matthew
Posted 10/25/2007 9:10 PM (GMT 0)
Oh yes I have,I know when I first got sick the doctor's tried to find out what was wrong and did every test you could think off(except)for a colonsnocaphy(sp)it was at this point and time all of thoughs docotr's were making remarks like it's all in your head or there's nothing wrong but I knew better.Once this was said my ex-husband demaned that I be sent ot see a Gastro and I told my doctor that I wanted to be alert because I wanted to see what was causing me so much and I watched the moniter and I was told that I had Crohns.I was releaved (sp)and now I had proof and it wasn't in my head.I took this to the doctor's that accused me of being a drug sweeker,and telling me I was crazy.So yes I was glade to finally get a DX.
Posted 10/26/2007 1:14 AM (GMT 0)
Doctors firstly need to be taught how to listen to patients, not tests. Even the best test results are often open to interpetation. One of the more frustrating things about our DD!

Matthew
Posted 10/26/2007 1:38 AM (GMT 0)
i have read many posts about people showing up fine on colonscopies and then later having another test ex:camera pill and tons of stuff showing up.  I'm a perfect canidate for that seeing as though the last two colonscopies showed up fine but still having tons of symptoms, pain, diaherra, etc.  then when they see no problems they don't want to treat the crohns.  I've been told i must have ibs as well, which could certainly be true but just cuz they didn't find anything doesn't mean the crohn's isn't active.  I hope you get your anwsers so they can properly treat you!!! 

Posted 10/26/2007 2:49 AM (GMT 0)
I must be unusual in that my gi doctor is treating me for IBD with Pentasa based on my symptoms,history and results of the medication trial. My run around has been going on for at least 10 years. I guess I finally got lucky and found a doctor who can think. I can relate to the hoping for them to find something.
Posted 10/26/2007 3:11 AM (GMT 0)
I went undiagnosed and was miserable for years before they finally found Crohn's last January.  By that time I was so sick I was waking up 3 or 4 nights a week in excrutiating pain.  I live alone and I would sit awake at night waiting for the vicodin to kick in terrified that I had an obstruction and should be driving myself to the e.r.  While I was awaiting the results of my tests my p.c.p. said he hoped they came back negative because he would rather I have an annoyance than a disease.  It was very unsettling to me that I actually hoped they would show Crohn's so that I could get treatment.  For all the years leading up to this point I'd basically been told to reduce my stress, watch my diet and live with it.  It made me feel like I was being a big whiner and my doctors were just humoring me.  When my colonoscopy came back positive I felt so vindicated and relieved because now there was actually a course of action that could be taken.  Of course, I'm not glad I have a disease.  I'd really rather not!  But to be told there's really nothing wrong with you when you know there is is horribly frustrating.  All my tests one year earlier had come out "normal."  The next year the radiology tech who did my SBFT the  told me, "This time we got better pictures." 

Posted 10/26/2007 2:49 PM (GMT 0)
Hi, welcome to HealingWell!
Yes, good point. One test might even miss stuff on one look. I was the poster child for this when I wasin college. Always got the stress line too, reduce it etc... And follow up tests weeks down the road would turn up something. And so it goes..

Sincerely,
Matthew
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