need a little support and advice

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sammies
Regular Member


Date Joined Feb 2008
Total Posts : 493
   Posted 5/21/2008 11:37 AM (GMT -7)   
So, I went for my colonoscopy yesterday. (BTW small bowel series on Friday showed all good--very thankful). Doc was able to dialate rectum and sigmoid colon. Disease action on left and right colon. When he got to the right colon, he saw what he identified as 2 openings. He tried to get in them but couldn't. He was afraid they are fistula openings. Sent me immediately to radiology for a hydrated barium enema (the one where the contrast is clear). Much drama here as I had to wait almost 3 hours for the test and was an absolute dehyrdated, exhausted week mess by the time I went in. Radiologist tried to do a rectal exam and I SCREAMED. The team decided it was way too tough to do both a colonoscopy and the enema test on the same day. They called my doc who really insisted they do it. So, they used a catheter and we did it. They determined the 2 openings he saw were ulcers. The other results matched his. There were no sinus tracts that got filled with contrast. So, Doc went back to radiology today to see the results for himself. He's still not convinced and wants me to go for an MRI endoscopy. I can't stand the drinks, I'm weak, I have constant D, and I'm out of my head.

I've been with this doc for 23 years and I trust him but I'm wondering if at 36 years old, I need to say NO. I want to start the new med. I want to treat my disease. I'm only on pentasa and immodium.

What do you guys think?

And what is your experience with the MRI endoscopy?

I am so freaking out!!!! sad
23 years with moderate Crohn's/colitis; fistulizing crohn's; pentasa


karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 5/21/2008 12:09 PM (GMT -7)   

Wow, what a rough time you had! I am sorry, I am no expert on the subject but I do understand your feelings to treat the disease and stop the tests. You should tell your doctor you want to try the new med and treat the disease. Maybe since you have been there so long he assumes you would not want the med. Let him know you do.

Karen


 ...

Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 On 150mg Azathioprine (generic Imuran), Pentasa, & Entocort (take zofran for nausea now)

Diagnosed w/  Fibromyalgia May 2007 also on Soma

Also on Prilosec 2x a day for Hital hernia and other issues  Might be having surgery soon to correct hernia.


gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4101
   Posted 5/21/2008 2:09 PM (GMT -7)   
Try telling your doc that you need to stabilize before you can handle more tests...I wonder about a round of prednisone and maybe IV hydration if you are dehydrated. I respect that your doc wants to know exactly what you have in order to treat it properly, but your severe symptoms matter too! I went through this during the winter. I had Salmonella (food poisining) but we didn't know it and thought it was a major Crohn's flare. I had to get a CT enterography while I was severely dehydrated, and it was really horrible! You deserve to trust yourself and speak up for what you need. Good luck!!
49 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007. Also have IBS, and had Salmonella Dec. '07
currently taking Pentasa- 8 250mg pills per day, Cipro 1 week/month, Metamucil, probiotics


sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 5/21/2008 2:15 PM (GMT -7)   
Maybe ask the doctor if the tests show that they are fistulas are you going to treat me differently than if they are ulcers. If either way you are going to start the same new med then why do the test. If he will treat the two differently then you should concider the tests. But, not until you are feeling a bit better.
Sj

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 5/21/2008 2:30 PM (GMT -7)   
Hi Sammies Sounds like you been put threw the wringer. Yes I would think they need a different med. if that's what is going on. I would think they could wait till your a bit more stable. Gee hope you get some rest and feel better soon. Keep in touch.lol gail

Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2691
   Posted 5/21/2008 2:38 PM (GMT -7)   
Good lord! Some of these doctors just get test happy, and it drives me nuts. As I always say, is it going to change the treatment he's going to give you? If not, then I'm not really willing to put myself through more hell! My GI (the one I won't see anymore) wants another colonoscopy next month, just have a look see. I don't do look sees. LOL If you have a real good reason to get in there, fine. But it hasn't been that long since my last one, I know what I have wrong with me, and it isn't changing his course of treatment for me.

At the very least I'd want to be getting treated and start feeling better! Good luck to you!
~Jennifer
 
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Prednisone: tapered to 35 mg, Asacol, Questran, Toprol XL (for high blood pressure).

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