Can symptoms come & go...?

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hukleberrie
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Date Joined Jan 2008
Total Posts : 491
   Posted 2/17/2009 11:29 AM (GMT -7)   
I mean, can you have crohn's & feel okay (not great, but functional) with pain, but functional, one day, then be down for the count the next? Then functional the next?

Just curious.... my GI seemed to think because I can still go to work, do okay a few days, then super sick a few days, then functional again, that it can't be crohn's.... Just wondering what you all that have been diagnosed felt about this....
Live for today, for tomorrow you might just get hit by a semi.


pb4
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Date Joined Feb 2004
Total Posts : 20576
   Posted 2/17/2009 11:33 AM (GMT -7)   
You certainly can and if your GI doesn't think so then he's out of the loop....I've had 4 different GI's tell me that with CD you can go into remission for a day just as a flare...remissions and flares can last anywhere from a day to yrs.

What does your GI think is going on if he doesn't think your CD can do this?

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


hukleberrie
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Date Joined Jan 2008
Total Posts : 491
   Posted 2/17/2009 11:44 AM (GMT -7)   
She isn't sure I have CD.... I am STILL awaiting a dx. PCP thinks it's CD, just waiting on the GI....
Live for today, for tomorrow you might just get hit by a semi.


Zanne
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Date Joined Apr 2005
Total Posts : 3763
   Posted 2/17/2009 11:54 AM (GMT -7)   
I can't tell you how many times I have had my doctor tell me and I quote, "I have to keep remembering how sick you are because you always look so good." So yes, you can function with CD. At my worst, I would get up everyday, put on my makeup, take my kids to the bus stop and refuse to let the other mothers see how awful I felt. It was my personal badge of honor. It was the very rare day that I would miss a day of work.

Might it be time to get a new GI or a second opinion?
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


inflamed
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Date Joined Nov 2005
Total Posts : 1340
   Posted 2/17/2009 11:57 AM (GMT -7)   
Yup. It can change even in the course of one day. It's not 100% well or 100% sick.
Hoping to stay in remission after the birth of a healthy baby girl. On Pentasa during my pregnancy, went med-free 2 months to nurse (stupid), but back on Pentasa and still nursing.


hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 2/17/2009 12:35 PM (GMT -7)   
I figured... She says I confuse her. One minute I get the CD dx, the next she says it can't be due to a clean c-scope after months on prednisone & azulfidine. My PCP wanted me to get 2nd opinion, tried, but no other GIs in area... I have since contacted the head of the IBD clinic at the teaching hospital. Hopefully I will get somewhere....
Live for today, for tomorrow you might just get hit by a semi.


LittleSisSmurf
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Date Joined Apr 2006
Total Posts : 164
   Posted 2/17/2009 12:35 PM (GMT -7)   
surely ur doc has heard the saying "good days and bad days" We all have them. Some more good then bad and vice versa... Good luck and here's hoping its not crohns but this is a great site to look for answers if it is..
I am 34rs. old mother or 2 wonderful kids. I have crohn's colitis. I am on Imuran, pred., and am starting remicade. My 18 yr. old son has just been diagnosed with crohn's too.


hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 2/17/2009 12:44 PM (GMT -7)   
Thanks....

I think it's CD... so does PCP... just waiting to find out for sure. I thought after the small bowel follow through showed inflammation, that I had my dx. If only that 2nd scope had shown something else. Then when I had my last EGD, it found inflammation and ulceration in my stomach, but no answers as to what is causing it except "overproduction of stomach acid"....

My sister-in-law tells me I am tough & that most people would have already been fired or quit cuz it's hard to work & be sick so much.... I hate how you can feel like crap, have horrible pain & no one takes you seriously.

Not that I WANT CD, mind you, but I DO want answers AND treatment!
Live for today, for tomorrow you might just get hit by a semi.


Texan with Crohn's
Regular Member


Date Joined Dec 2007
Total Posts : 362
   Posted 2/18/2009 5:15 AM (GMT -7)   
This is common with me. And, of course, two GI doctors (after mine moved to Canada) don't have a clue... so I am not so happy with GI doctors. PCP knows it's CD and I know it's CD. I revel in the very few days that are good and try to get out and actually have a life. Right now my quality of life is down the proverbial hole. Hoping that next Wednesday I can get a good medicine for the CD arthritis!!

hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 2/18/2009 5:34 AM (GMT -7)   
To be honest... it's the posts on this site that keep me going.... you all let me know that I am not crazy & you feel & understand completely my difficulties....

Luckily I have finally gotten my appt. at the IBD clinic at the teaching hospital! April 6th. I feel like this time I will finally have my answer.... I have researched the doctor & feel comfortable that she will be knowledgeable enough to figure it out, one way or the other. And I know my PCP will support me as well, I am blessed that way. Wish me luck....

So, I have good days & bad... usually it's weeks bad, then a couple good, then bad.... that kind of thing. I am pretty good at hiding my health problems.... I do myself up even more on days I feel bad sometimes... trying to hide it. Maybe I should just quit caring what I look like when I go to the doctor, lol.
Live for today, for tomorrow you might just get hit by a semi.


MMMNAVY
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Date Joined Jul 2006
Total Posts : 6927
   Posted 2/18/2009 10:57 AM (GMT -7)   
Yes, it can.  You are not alone.

Forum Co-moderator - Crohn's Disease:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 2/18/2009 4:21 PM (GMT -7)   
Sigh.
Live for today, for tomorrow you might just get hit by a semi.


indigosunrise
Regular Member


Date Joined Nov 2007
Total Posts : 497
   Posted 2/19/2009 1:52 PM (GMT -7)   
For everyone who has had trouble getting the official diagnosis, I feel for you. My Internist, like so many of yours on here, believed it was CD from day 1. The first GI I saw would not diagnose it, even with all the symptoms and signs I had.

It is good to know that flares can come and go like that. Some days are very good for me, and some are not so great.

I sincerely hope you get the answers you need, Hukleberrie. It is sooooo frustrating!

Valerie3
Veteran Member


Date Joined Feb 2009
Total Posts : 529
   Posted 2/19/2009 1:55 PM (GMT -7)   
I can't believe that your doctors are ignorant enough to think that Crohn's doesn't come and go. I guess I've been lucky, all the doctors that I've dealt with so far (not that there have been many) know that as one of the classic signs. I really hope that things work out for you!

Kittikatt
Regular Member


Date Joined Jul 2004
Total Posts : 422
   Posted 2/19/2009 2:25 PM (GMT -7)   
Heck yes you CAN. I've been dealing with on and off "sickness" daily for the past month. Fine in the morning...sick by afternoon. Sometimes sick in the morning, fine by the afternoon. Then SOMETIMES I have a GREAT day and then sometimes I have a completely CRAPPY day. It's NEVER the same...unpredictable.

Seriously...what is WRONG with these GI's out there? I know there are OTHER gastrointestinal illnesses they have to know about like colon cancer, diverticulitus, IBS, stomach ulcers, etc, etc, etc...things that are "more common"...but it SEEMS like more GI's should be on top of Crohn's and UC symptoms BETTER than many of them seem to be. Seems like they should always be studying these 2 diseases. Maybe I'm biased with that snide comment since I have Crohn's but I do get annoyed when GI's don't know or think of simple things that maybe should be at the forefront of their "specialist" minds. Particularly with extraintestinal symptoms. We all tend to have to go online to try and diagnose ourselves.

Heck, I've been having an upper burning/gnawing/aching pain right in the middle of my breastbone off and on since August. I told my GI about it in December. He kind of blew it off and just told me to pop and extra Prilocec when I had the pain. The pain got worse and worse through January. I asked for an H.Pylori test (thinking it was a stomach ulcer) but it came back negative. So when my GI got around to my file and called me back (because I'd been calling the office every day to find out what to do since the H.Pylori was negative), he sent me for a gall bladder ultrasound yesterday and also scheduled me for an Upper Endoscopy. Turns out I have gall stones. Turns out you can develop gall stones when you've had rapid weight loss. I dropped 40 pounds in less than 3 months last year during an 8-month long Crohn's flare. When I mentioned the pain in December, why didn't my GI think about my gall bladder THEN??? I know that probably shouldn't frustrate me but it does.

I still think over half of people that have been Dx with IBS actually have IBD. I've even seen a statistic about that somewhere on the web. If that's the case, GI's need to start listening to US here on this board to see all the different things we all deal with AND some of the very same things we all deal with.

Sorry...got off on a tangent there. Your GI is WRONG. Crohn's affects EVERYTHING. It can make you sick one minute and allow you to feel fine the next minute.
Diagnosed in October, 2004 at age 32.
37/F/SC
Current Rx's: Colazal (generic), Omeprazole, Ferrous Sulfate, Librax, One-A-Day multivitamin, Probiotic, Omega-3 Fish Oil, Vitamin D, Vitamin A, Calcium-Magnesium-Zinc, Cranberry pills
Secondary conditions: mouth ulcers, joint pain, swelling ankles, extreme fatigue
Previous/occasional Rx's: 20mg Prednisone taper, Flagyl, Levaquin
No surgeries to date


indigosunrise
Regular Member


Date Joined Nov 2007
Total Posts : 497
   Posted 2/19/2009 2:59 PM (GMT -7)   

Thanks for that post, Kittikat!  That is so true what you said about extraintestinal symptoms!  In fact, one of my extraintestinal symptoms is what led my Internist to believe I had Crohn's. 

Even with what the first GI found during my scope AND the extraintestinal symptoms I had, she still refused to diagnose me.  Needless to say, my Internist is not very impressed with her.

My days vary greatly.  I have days where my arthritis hurts a lot more than others, some days when I can barely walk.  My stomach started acting up recently as well, and it has been fine for quite some time now.  You never can predict what your day will be like with this disease.


hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 2/20/2009 5:26 AM (GMT -7)   
Wow! What great support! I thought maybe I was just crazy....

I did have upper pain, had the EGD & she said she might check my gallbladder, too. But after the EGD, they DID find an ulcer, but I am h.pylori negative as well! So I have inflammation & ulceration in my stomach with no dx. No celiac. No cancer. No h.pylori. It's just an overproduction of acid (that I have never had a problem with in my 34 years, lol). I KNOW what is causing it, why can't she just dx me already!?!? I even had a SBFT that was positive for IBD. But after months on Prednisone & Azulfidine, I had a c-scope that was clear, so she said my SBFT was wrong. What?!?

I am hoping in a month when I see the specialist at U of M that she will be able to help me. I need treatment. Boy it's exhausting.
Live for today, for tomorrow you might just get hit by a semi.

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