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Posted 6/21/2011 4:18 PM (GMT 0)
Had my GI appt yesterday, and although I love my GI sometimes he really irritates me.

My recent blood tests show my inflammation markers at 43 and normal scale range for me is 0-30.  So that shows that I have inflammation in my body, right???  Well I have not been feeling well, and readily admit I have had alot of stress of late.  But he just blows off these numbers off.  Says it could just be my arthritis. 

Also I spoke to him because for the past couple of days, I have been so fatigued I can barely put one foot in front of the other.  My HCT & HGB are both low, although my Iron stores are okay.  He says these tests are normal.  Am I missing something here??

He wants to do another scope on me, and thats another thing that ticks me off.  Last time he attempted to do a scope he could only get to the first bend in my colon and could not even look at my reconnection site because my left side of my colon is adherred to my body cavity by adhesions and he was afraid he would perforate me.  So nothing has changed since the last scope, why does he want to do another one???  He says well at least I can look at your colon and see if there is anything of concern there.  My disease has been in the typical TI/Cecum area, never the colon. 

So I am going to have a scope done on 9-1-11.  I straight out told him is this next scope is unsuccessful, I will from here on out REFUSE to do them.  I also asked why can't we do a pill cam and scope at the sametime to I only have to do one prep.  Nope wants to do them separately.  Arggghhhh!!! So I told him, never mind on the pillcam, I am not going thru another prep, those things already make me soooooo sick, why would I do it twice. 

Oh well, thanks for letting me vent.  Not a happy camper!!

Posted 6/21/2011 4:49 PM (GMT 0)
I'm sorry, Nanners! Now it sounds like you are the one needing a hug. *HUGS* !!!! I would be frustrated too. Did you ask him why he considers the labs normal when some of the values are low? That would confuse me too.
Posted 6/21/2011 4:51 PM (GMT 0)
darn doctors.

Sorry, I go see mine this afternoon so I'm probably projecting. I have no idea what to say to you other than I completely agree with you. Why did you agree to the scope? What is the point of it? What did you want out of this meeting? Do you have a plan for dealing with this flare? Weren't you expected a steroid trial - did that happen?
Posted 6/21/2011 5:30 PM (GMT 0)
I can tell you from my experience that a mildly low Hbg is very low to me since I stay on the high side when I am healthy so I wonder if you are the same? My GI disregarded my symptoms and history and ignored my mildly low HBG until I almost died. In fact, I would have if it wasn't for a very vigilant NP who took one look at me and knew I was very sick. SO, that leads me to always be my own advocate and if something sounds not exactly right, follow your gut instinct as no one knows your body as well as yourself. I now demand copies of my test results and decide when and what type of tests and medications I am willing to take. I always listen to what they have to say but I don't make a decision until I have time to research each and every proposition. If you feel that there is a possibility that your GI could perforate your colon during a scope, I would seriously reconsider allowing the scope. I wonder if your GI even remembers that about your colon. Sometimes I wonder if we are all just a number... Good luck and keep us posted!
Posted 6/21/2011 5:52 PM (GMT 0)
I agree with pmedic, about being your own advocate. We have an uncanny knack of knowing our own
bodies better than any of these doctors.
Your scope is not until 9/1, why don't you get him to do the pill cam instead of the scope, especially if
he can never complete the scope anyway!!

It's only a thought Gail, but my sister kept having scopes where they could only get so far, turned out
that she had a torturous colon due to diverticulitis. That part of her sigmoid had to be removed. Now I'm
not saying that's your problem, but that is one of the diseases of the colon that could cause that problem.

Sending you huge hugs honey xx
Posted 6/21/2011 8:33 PM (GMT 0)
If he can't get to the TI, then the scope is probably a waste of time (and sounds a little risky too).
How about a SBFT or high tech ultrasound first? US can show a lot these days in regards to thickening of the TI.

What did he suggest for the 'd' in the meantime? Did he at least give you a short round of antibiotics or something?

Hope you get an answer soon. (((((((Nanners)))))))
Posted 6/22/2011 1:04 AM (GMT 0)
Sorry you're stressed Nanners. You're paying for service, he should address your concerns instead of blowing you off.

I hate colonoscopy prep too, it's the worst. The GIs are always pushing another scope. :(
Posted 6/22/2011 2:04 AM (GMT 0)
Awww Gail. I'm sorry. (((HUGS)))
Posted 6/22/2011 4:14 AM (GMT 0)
Nanners, I think I would have done the pill cam and refused the scope. Sorry you have so much to deal with. Big hug ((((((((((((()))))))))))))))))
Posted 6/22/2011 7:56 AM (GMT 0)
Shhhessss this really pisses me off.

I know all you guys don't know me that long and I have only been dealing with this disease DX'ed for about a year and a half but Nanners I would never stand for what your GI said or did. He didn't address your needs or concerns. I always get a copy of my monthly bloodwork and also suggest to both my internist and my GI what tests should be run.. I have never had them say to me "No" Just recently I told him to check my vitamin D levels and iron, sed rate and crp.

Also my b/f was just at his internist and since all this has happened to me he has learned a lot about CBC with Diff etc etc and he requested that from his doctor because he hasn't been feeling well and she said very sternly and insecurely "When did you become a doctor? I will run only the tests I deem necessary" I was so glad that I was in the room at the time acting as his advocate. He has since decided to change doctors.

But getting back to the problem at hand. Your doctor may have had an awful week.. I say this because you said you have always liked him. I think you should call him and cancel the scope and insist on the pill cam as long as you think it will go through and not get stuck!! If he insists on the scope and is inflexible I think you should find another GI.. You don't need to get perforated now of all things!!! Also having to wait till September is ridiculous.. I can get one next week from my GI if I want!!
I know this is the last thing you need to start researching new drs and thinking about right now but you only have one body and it has taken such a toll lately
In either case whatever you decide to do I wish you well and that you get better soon..
Here you are helping all of us and giving great advice and it's a darn shame that your GI doesn't respect your intelligence in this matter
NY VEGGIE
Posted 6/22/2011 1:12 PM (GMT 0)
Thanks all!! NY Veggie the reason the scope is for Sept 1 is because I chose to do it that far away. I have to work it around my job, and because these things invariably make me sicker, I need the extra days off to recover. So this way I will get some extra time off afterwards because its the Labor Day weekend.

I am going to call my family doc tomorrow because I am suffering so much fatigue. Yesterday I had to leave work again because I was so tired I could barely put one foot in front of the other. Went home and slept 4 hours straight, got up for a bit, then right back to bed and slept the night thru. Still feel exhausted. My HGB is 11.3 (low normal on the scale is 12) and my HCT is 34.3. My iron stores or Ferritin is 146. That is in the low normal range. And my levels haven't been this low since 2007.

Will keep you posted on what my GP says. I can't function being this fatigued. I haven't felt this tired in a long time. And I think driving is getting to be dangerous too. Hugs!
Posted 6/22/2011 1:24 PM (GMT 0)
Nanners, for the fatigue, maybe you can request a vitamin D test also!
Posted 6/22/2011 1:25 PM (GMT 0)
Oh Nanners, its just not right that we can't get the doctors to listen to us. At some point you would think they would stop looking at their silly tests and actually SEE their patients and HERE what we are saying.

Can you get your GP to get your GI to change his mind about the Pill Cam and do that one instead of the C-Scope?

I hope all the rest yesterday did you some good and you have a better day today.
Posted 6/22/2011 5:27 PM (GMT 0)
I wish the rest had done the trick Zanne, but I am sitting here really tired and feeling like crap, and trying my darndest not to cry. I also just found out my family doc is out of the office until late in July. Makes it even harder should I need to take time off work. Arrrggghhh!!! Can nothing go right???? I give!
Posted 6/22/2011 6:13 PM (GMT 0)
Nanners, wow , thats just wrong .Having to waste a perfectly good holiday so you can be sick is , well , just not right . Your boss must be an A hole or worse. You can tell them I said so too . Hang in there though . I worked for a bunch of A holes in my many years and when you finally get to retirement you can tell them what you think of them. You can also take the high road , get your retirement and say how nice and then walk out with a big smile even though you would like to moon the bunch of them.
Posted 6/22/2011 6:33 PM (GMT 0)
Nanners, Big ((HUGS)) I know it is so frustrating when we just are not the textbook patient our doctors want us to be. I wish there was something else they could do for you. Is there no way the doc will treat you just by your symptoms without having the actual physical evidence?

I really hope you can get some help soon. I know that extreme fatigue can really get us down. Try to keep your chin up and push that doc to do something for you.

Tanya
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