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Just need to rant!


Tue, August 26, 2008 12:00 AM

This sucks...

I don't even know what to do anymore. Since being diagnosed in February, I have yet to see any kind of remission or anything even close. I've been having an especially hard time lately with all kinds of new fresh hell-like symptoms. I was up all night last night with tenesmus pain and this morning...well, I had an accident on the way to work. Not to mention the fact that the bleeding has started up again badly (and my hemoglobin is already too low). I've phoned my GI and left a message for him to call me so hopefully I hear back from him today. I'm just not sure at what point I should be really worried about the blood loss versus the low hemotology. The last thing I want is to faint dead away at work (which is where I am now). It doesn't help that I haven't eaten anything yet today (too afraid). Since increasing my dose of Mezavant, I haven't seen any improvement at all. It seems like my stupid colon is pushing me closer and closer to having to take steroids. I feel like screaming at it "Is that what you freaking want?! Do you WANT us to be on steroids?! Do you WANT us to get bloated up and break out?! Do you WANT to potentially harm our bones and give us osteoporosis?!"

GAHH!

Ok, I guess I'm a the anger stage of the grieving process...

Thanks for listening.

FPO moogan83
Joined Aug 12, 2008

Sun, August 31, 2008 2:50 PM

 Reply posted for Moogan83.

I feel the same way sometimes. It's so easy for these GI docs to tell you what you should or shouldn't do. Fact is: Where I live, in North Central Florida there is not one Gi Doc that is endorsed by the Crohn/Colitis foundation. The doc that diagnosis ed me was at the Uni of Florida. He knew his stuff. But the GI doc I see in Lake City, Fla. does not have a clue as to how to treat my disease. Medical care in this rural area of Florida stinks. They seem so disinterested in what I try to tell them. Then on top of that, I have to ONLY deal with his nurse practitioner. She has no idea what to say to me. I get the consolation of seeing his partner and thats it! If you get a good GI doc, don't loose em. I was diagnosed in 2005 and have yet to get good care here in the Live Oak/ Lake City area. The only thing I see is my GI doc getting rich and me getting worse.

FPO guyserfla
Joined Aug 29, 2008

Thu, August 28, 2008 12:00 AM

 Reply posted for Moogan83.

Get you hemoglobin checked ASAP!!!!!  I have to have IV iron infusions due to the iron loss.  It isn't even due to the amount of blood I loose.  It is from not absorbing the iron that I do manage to get in me.

Norm for women 12-14 mine goes 5-6 and I am still walking.  The doctors don't know how but I am still going.  After the infusion I feel like a million bucks...not to mention it costs a bit of $$$$ to have it done.  It is ALL worth it.  I go every 3-5 months and it takes 6-7 hrs but it is worth it.

Have your doctor do a bone marrow test....ouchy but grreat sedation....I dont' store iron in my bone marrow so what I manage to get I don't keep. You will feel better all the way around if you get some iron in you.  It helps with pain, fatigue and your mental statsis will be so much better too.

Good luck

Grammycarol

FPO grammycarol
Joined Aug 3, 2008

Wed, August 27, 2008 10:00 PM

 Reply posted for Moogan83.

Hi there, I'm sorry you're going through this, but know that you are not alone!  I too suffer from tenusmus, absolutely horrible.  The urgency I experience is just horrific in itself ; and I know how you feel about accidents.  When I was first diagnosed in 2004, I was sick from my UC flare up that I lost 80 pounds, I became sicker after my pregnancy in 9/05 (delivered a healthy baby boy though!), and actually ended up in the hospital for 5 days Thanksgiving week 2005.  I did a loooonnnng stint on Prednisone (almost a year), as well as enemas, suppositories and increased dosage of Asacol.  I know it is very very tough, and you think it will never end, but trust me, I did NOT want to be on steroids either, but basically ended up with not having much choice in the matter, but on the other hand I'm in remission now; although that urgency is still there.  I hope you feel better soon! Good luck!

FPO luvmy4boys
Joined Jun 19, 2008

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