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Frustrated

Z

zacatak98

Guest
I am sooooo frustrated.
I beat cancer last year. However I have had alot of problems with my right side forever... every doc has a diagnosis. During my childhood it was just a stomach ache, during cancer it was the chemo or radiation... any ither time it is stress... if I had a dollar for every diagnosis I would be rich!

During my more recent stay at the hospital due to the extreme pain, loose bloody stools and reapeated treatmtns that I get everytime (IV predisone and morphine for 3 to 4 days) my doc says I have Crohn's. Actually not 1 doc, but 3 doctors. So my gp sends me to a gi doc. He proceeds to give me the run down on my records and how he wants to treat me. However he wants to scope me first, but because the one of the areas affected is more in my smaller intestine, if the scope can't reach it, then he wants to the drink and scan thing... and because insurances are difficult to deal with he needs to do those 2 procedures before he can do the little capsule camera that ya swallow. So during this whole thing he basically says regardless of what he finds, he knows how he will treat me. So I leave there pretty frustrated and called his office and tell them that i am not going to do the scope, they ask why, I tell them because I don't want to and besides he already said he knows how he will treat me. Well, I get like a zillion phones call from them over the next few days, which I was at work so I didn't answer, then I get a letter from the doc today that says he doesn't think I have crohn's, and that my bloodwork was ok except for a imflamitory (sp?) marker that was elevated. He tells me to continue taking the medicine for crohn's because it will continue to relieve my symptons but after I finish the prescription (a 6 month supply) then he will not refill any of them unless I do what he wants me to do. I am soooooo frustrated... if he doesn't think it is crohn's then why tell me to keep taking the meds... if not crohns' then why did the other doctors say it was, if not crohns then why why why??? My gp's nurse said her husband spent years going from doc to doc... one said he had it, one said he didn't. I told my wife the hell with it all!!:ymad: ! I am not going back to that doc... I will just let the gp give me the meds i need when i have a flareup like I have been doing and go from there.
 
mikeyarmo

mikeyarmo

Co-Founder
Welcome zacatak98 to the forum. You certainly have been through a lot, and it definately appears to be a frustrating experience. What medication are you one now? Some are rather mild so I could see no reason not to just finish off the supply and see what happens after. Were you having any symptoms before being diagnosed that made you believe/doctor's believe you have Crohn's Disesae? The blood test can show the level of inflammation in the body, which can show if there is a form of IBD (which is inflammation of a part of the digestive tract, which accounts for the rise in inflammation).

A barium swallow through (what they wanted you to drink) is not much of an ordeal and would likely show what (if any) active disease you currently have. I would encourage you to at least do this, as it can prove what you have and may allow for a better treatment plan to be established. Otherwise try not to stress (it can be a trigger for flair ups with the disease, which basically means cramps and dirrhea) so take it easy and hopefullly things will pass.
 
K

Kev

Senior Member
Location
Halifax, NS, Canada
Hey Zac.. I can really sympathize with your frustration. Sounds like you have been put thru quite an ordeal... a medical form of running the gauntlet, and each/every time you feel like you are close to the finish line, the damned doctors move it further away... I dunno if this will help you, but it worked for me, you're welcome to try it or not. I felt the same way, was getting frustrated beyond belief... doctor after doctor, test after test. Then I changed my attitude. Stopped seeing these things as hurdles AND started to view them as opportunities. Opportunities for me to take a positive role in my recovery. To fight this illness. It changed things for me.. no longer felt like a guinea pig being prodded by doctors,
but a member of their team fighting a common enemy. Now, I'm not saying that I would pick these same people to be on my side in a bar fight, over even drink with them afterwards... But, thanks to my GP, I did find the BEST doctors on East Coast
and then I double checked everything they told me, or wanted to do to me, first. I realize that a doctor who has such poor people skills as to tell you that he 'knows' what's wrong with you but needs to perform these tests anyway MAYBE not what you really wanted to face.., BUT you can turn this situation around so that it works for you.. Afterall, his guess diagnosis could be wrong (doctors are only human) So,
I'd suggest you go for the tests... All of them.. Insist that your GP is copied on ALL test results.. Ask your GP to recommend another GI, go to them for 2nd opinion. Make these doctors work for you... The enemy is the disease, it's up to you to try to pick the best members for your team in this fight. And good luck to you in fight!
 
V

Valentina

Guest
HI Zac, welcome to the site.. I know its frustrating to just go along with things that seem to make no sense.. but work with the DRs if you can.. they are there for you, and have been doing this for a long time (we hope ;))
if your really not happy with the care youve had to this point, then take it to someone else, but dont just sit on the fence.. crohns doesnt seem to respond well to that, as Im sure you will read here a lot with some of the other site members stories.
good luck.
 
J

Jeff D.

Hey Zac welcome to the group. I would do at least the barium test because it will show any active disease. I think the GI you went to is not a very good one. Go to www.ccfa.com and type in your zip code in the find doctor section to find good GI's in your area. But a doctor should not say that they know how they are going to treat you, what if you were allergic to any of the medications. Also a scope and barium milkshake tests seem to be a common practise to test you.

Good luck
 
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