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Crohn's Disease
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Posted 11/20/2008 8:36 PM (GMT 0)
I have only been diagnosed for less than a year with Crohn's Disease. I had my first c-scope last November 2007 and the diagnosed me with IBS. They gave me meds but I was still having problems and running to the bathroom all the time. Then last January they took blood for a prometheus marker ( I think that was the name of it) and was not told till march that I had crohn's. Not much was explained to me and I was told I could find info on the crohn's website... I feel like when I go in to the doc's and I mentioned any kind of symptom I have been having I get blown off. My stomach was cramping a lot this summer and this fall. I am on Lialda 2x's daily and was on Endocort for 3 months. It is a lot better than it was definately and I feel lucky when I read how other people are doing. I do have weird problems with my bladder though, like an ongoing UTI but they can't find anything wrong. I am always tired, have hot flashes, and it seems like depression pushes its way in with it. I am aggravated I can't voice what is happening to the docs and get any answers. Thanks for listening to me ramble, I am just at my wits end. And one other question, what is the difference between active and inactive crohn's? I was told mine was inactive but I still have d and stomach cramping.
Thanks again!
Posted 11/20/2008 8:59 PM (GMT 0)
It can be frustrating, trying to talk to those docs and make them understand. My doc told me active disease means that there is inflammation and/or fistulas and/or ulcers present. He also said sometimes the disease is active on a cellular level that can't be seen by a colonoscopy or bloodwork but can be found by a pathologist from the biopsies they take during the c-scope. Inactive disease means there is no inflammation or sores or infections now but that the disease can become active at any time. He told me that you can have IBS (with the D and cramping) and inactive Crohn's at the same time. I know other docs might say something else, and that's another frustrating thing with these doctors, they don't always agree! Hope that helps! and I hope you feel better soon
Posted 11/20/2008 9:18 PM (GMT 0)
What kind of doctor are you seeing? Is it a Gastroenterologist? If not, you should get one on board, they are the best in treating Crohns. If you are seeing a GI, I think its time you get another opinion. That one doesn't sound very knowledgeable about Crohns. Crohns is a chronic and uncurable disease and must always be treated. Sorry you have had such a rough time. Stay with us, you will probably learn more here than with the docs:)

And welcome to Healingwell, look forward to hearing more from you.

God Bless,
Gail *Nanners*
Posted 11/21/2008 12:54 AM (GMT 0)

I just went to a new doctor..I had a great doctor which went to teach at a college on the east coast..His replacement I did not feel was caring or listened..The new doctor listened and was willing to engage my thoughts and feelings of my treatment..I find that is so important..Some of the drugs can be as bad as the disease and make you feel worse for awhile..I got great diet information and drug information from this site, and my first doctor I would discuss it with him..I saw a post on wellbutrin and tried it and had a bad reaction..at least I was able to go in and discuss it and try it..I feel so much better if I feel heard and informed on my treatment and don't feel like the doctor has no understanding of this disease and treatment thereof..

Cindy

Posted 11/21/2008 3:01 AM (GMT 0)
If your doctor is telling you to look up information about what he diagnosed you with yourself, much less online, I think it's time to find someone else. You're not paying hundreds of dollars to be told to look at wikipedia.
Posted 11/21/2008 11:52 AM (GMT 0)
jar567 -

Welcome. I have gone through multiple doctors due to the same. I have found that this board has afforded me more information than any other source. I am a real pain in the rear now when dealing with doctors. I am armed with info from this place and dispute inaccurate information given by any doctor.
Posted 11/21/2008 1:20 PM (GMT 0)
Thank you, thank you, thank you everyone for listening and giving me information!! It already takes a huge relief off to read your posts. Thanks Kimberlayn too for explaining that, it was something I never could understand, and felt as if it was all in my head since mine is supposed to be inactive. I have almost seemed to talk myself into thinking I don't have it, even quit taking my meds at times. I see a GI (who my hubby's family all loves and goes to and used to work for....) and I think what went wrong was it was my mom-in-laws doc and I think they thought I could get my info from her too. But to me it doesn't work that way and I need answers from the docs so I can know options and what I need to do... It just helps you feel at ease when you have information about it. I really appreciate everyone's posts and I already feel better. I will check on the different docs in town for second opinions.
Posted 11/21/2008 9:06 PM (GMT 0)
Another suggestion (from personal experience) is to ask every doctor you see for a copy of your file. They usually charge a small fee for that, but it's worth it to have a copy of your whole medical history to bring with you to your next doctor. If you're seeing a doctor who is not listening to you... move on! Find someone who will!
Posted 11/23/2008 12:35 PM (GMT 0)
ok, will do! It would be nice to have the history already.. Thank you airila :o) I am definitely going to check around.
Posted 11/23/2008 9:23 PM (GMT 0)
I've been having weird probs with my bladder, too! Tested for UTI, nothing there! Like once a week, I get this horrible pressure and I have to pee immediately, then it starts to burn like crazy, from the bladder all the way through the urethra. The only thing that helps is sitting on the toilet and waiting for the percocet to kick in, and then it goes away. Always happens once a week now. The only condition that matches my symptoms is interstitial cystitis. Check it out, if you figure out what's wrong with your bladder, pass on the info-maybe it'll help!

Posted 11/24/2008 6:02 PM (GMT 0)
That sounds exactly the same as mine. I checked out IC and was thinking the same thing.. I am not sure how to go about it to figure out how to get rid of it though. The biggest problem is having to pee all the time that bothers me the most. I am only 26 and already feel like my bladder is acting like it is old! grr.... If I find out anymore info I will pass it on... Maybe it will come and go as well, the cramping and burning has let up a bit but when it was really bad it felt as if my whole body was sick ~ fatigue, sleepy, felt like the flu or something... I hope yours gets better and we figure out whats the problem!
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