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Crohn's disease

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  • andreamarie
    replied
    Katrina, my profile is not nearly as complicated as yours, but it's complicated. My pcp is very bright but VERY uncomfortable with me. She just made another incorrect dx that was shot down in two minutes by the specialist I see.This will make her even more uncomfortable. Years ago when I was looking for a pcp, a doc friend of mine gave me a referral. I called the doctor and she said "a patient like you would be an abuse of my time."
    Even the doctors I worked with were a little stunned.

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  • Katrina
    replied
    LOL Well he wasn't insensitive to IBS. He was willing to treat that but I didn't see how a antispasmodic would prevent blood loss, which was the symptom I desperately needed help with. I do think though that my case was just out of his league and he wasn't willing to admit it. I totally agree on a lot of choices on the prep...and being clean. I am usually told not to prep because they clean me prior themselves these days. I can't say that is an option for others though.

    Thank you for the awareness you promoted!

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  • andreamarie
    replied
    Bubbe, my gastro insists on being clean as a whistle; otherwise he says it's easy to miss things. I actually did really well with prep yesterday.
    One of my friends who died of colon cancer had a procedure but wasn't clean and didn't want to back again. Two yrs later it was too late.
    Crohn's symptoms can be similar to IBS however constipation accompanied by diarrhea is rare. Also, it's systemic, affects the whole g.i. tract from the mouth to the rectum. I had massive hemmoraging; not a common symptom. I'm in remission now but when it was bad I couldn't put a lb on; was anemic, had high white cell blood counts which shows inflammation, night sweats. But everyone is different. CCFA.org is a great website for learning about Crohn's and Ulcerative Colitis.
    Re the prep: there are quite a few different ones now. Most docs just use the one that they're accostomed to. I'd ask what other ones are available.
    Also, some docs do half and half: e.g. you drink half the fluid during the day and half early a.m. before procedure. Since some gastros think it's a better prep you might find one very willing.
    I did find the MRI of the small intestine a nightmare because you have to hold a lot of fluid in your bladder. I was in good shape then and it was hard.
    The nurse who did my procedure today has an ongoing bladder problem and is not getting better. First doc said i.c., second said irritable bladder. She had a device inserted under her skin two yrs ago and is having it taken out because it hasn't helped her. I told her about my meds and am bringing her info when I go back tomorrow for another procedure. She is seeing a doc at one of the best hospitals in the world and it doesn't matter.
    Katrina, your local doc shoudl be shot at dawn,at close range, without a blindfold. Good gastros recognized IBS as a real and often disabling condition
    To say something like that to a uc patient who's had to have their colon removed is dispicable.

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  • Katrina
    replied
    I agree on second and even 3rd opinions. My situation is unique but I had a local doc call my pouch (the part of me acting like a colon) fine and nothing wrong but IBS....and someone else tell me multiple ulcers. Since I was bleeding and iron deficient from all of the blood loss, I couldn't stand the doc that didn't think anything was wrong but IBS when I had already lost my colon to UC and was on my way to being as sick as I was when that happened.

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  • bubbe1
    replied
    crohns

    Originally posted by darlene View Post
    I have had Crohn's for 25 years. I get a colonoscopy every few years to check for cancerous changes. To help get through the prep, I don't eat anything the day before the test. I drink plenty of water, but I don't eat. Because I didn't eat, I can get away with drinking much less of the prep solution. I stop when my stools are free of solids. They will still be brown because they will contain bile. This might help those who have problems with vomitting due to the huge amount of fluid we are told to drink. I hope this helps.
    This is very helpful. Anything that makes that prep a little easier is wonderful!

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  • darlene
    replied
    I have had Crohn's for 25 years. I get a colonoscopy every few years to check for cancerous changes. To help get through the prep, I don't eat anything the day before the test. I drink plenty of water, but I don't eat. Because I didn't eat, I can get away with drinking much less of the prep solution. I stop when my stools are free of solids. They will still be brown because they will contain bile. This might help those who have problems with vomitting due to the huge amount of fluid we are told to drink. I hope this helps.

    Leave a comment:


  • bubbe1
    replied
    Crohns

    Andreamarie,
    What are the symptoms of Crohns as compard to IBS?

    Re MRI, I usually have open MRI because I'm claustrophobic. Doctors don't like that as much because they say the images aren't as clear, but it always seems to be good enough.

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  • ICNDonna
    replied
    I have had two MRI's and they weren't bad. It didn't involve any medications. If you're claustrophobic, be sure to tell them when scheduling so you can be pre-medicated.

    Donna

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  • Snowden1
    replied
    i cant get through the prep for colonoscopy...bladder flares and vomitting. Any suggestions - I didn't know about mri and need one of those now for back and liver check.
    Last edited by Snowden1; 04-06-2011, 12:39 PM. Reason: spelling

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  • andreamarie
    replied
    You are very smart to have gotten a second opinion. Colonoscopies cannot find Crohn's in the small intestine. An MRI can. If you don't want to go that route, have complete labs done; I'm tired now, but I'll list them tomorrow.

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  • KarenAnne
    replied
    Thanks for the great info! I have had colonoscopies every two years for the past 10 years because of precancerous polyps found 11 yrs. ago. I do have fm & ibs along with the ic. I am so sorry about your friend. His death may have been avoided with the proper care.

    The first gastroenterologist I saw disregarded my symptoms. I sought a second opinion & that GI doc found & removed the two precancerous polyps. He said I would have had colon cancer within 8 years. He definetly saved my life. Thank you again for sharing!

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  • andreamarie
    started a topic Crohn's disease

    Crohn's disease

    I do not have IBS but do have Crohn's disease. Got it fourteen yrs before i.c. Am concerned about others because some docs disregard other problems when they hear i.c., fms, cfs. A close friend of mine died of colon cancer because since he had severe fms (he was disabled) his doc said ibs. make sure you have a good workup. Crohn's can be very hard to dx.
    High incidence of Crohn's and Sjogren's with i.c. I have both.
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