Darned if I Eat Darned if I Don't!

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Nosilla73
Regular Member


Date Joined Dec 2009
Total Posts : 29
   Posted 12/26/2009 4:36 PM (GMT -7)   
So, like I have said before I have not been diagnosed yet with Crohn's but I seem to have a lot of the symptoms. I have a colonoscopy January 14 so I hope to find out soon what is ailing me. For years I have had these "episodes" where if I eat I get gassy and bloated and then I experience a significant change in my bowel habits. I also get severe pain on my right side. Sometimes I get rapid heartbeat and I feel weak and breathless and nauseated. TIn fact, this episode started on October 31 and I have not had one day since that I am not nauseated. I have severe to mild nausea all the time.
 
Anyways, if I don't eat I get low blood sugar and feel wobbly and dizzy, yet when I do eat then I have to deal with gas and feeling terribly uncomfortable in my stomach. Then of course having a bowel movement is not always a great experience. I have only had diahrrea four times in the past 2 months. But I will be constipated for two days then have a painful bowel movement with mucus (sorry gross). I will also have normal bowels movements for a few days and then back to really soft and sticky bowel movements. I have read that some people have up to 20 bowel movements a day consisting of blood and diahrrea so I am in no way complaining about what I am going through, I just feel like eating leads to so many uncomfortbale things that I would rather not eat. I have lost 15 lbs which I don't mind (my husband does though!).
 
I have tried to eliminate any foods that would make gas worse but even if I eat saltine crackers, toast, or chicken broth I get gassy.
 
In the past 8 years I have seen almost every kind of doctor under the sun except a gastroenterologist. Many doctors tried to refer me but I was petrified of the colonoscopy. I finally saw a gastro doctor 2 weeks ago and I can't wait to get this colonoscopy over with and find out something!
 
How many years did it take you to get diagnosed and how was the diagnosis made?

pimfram
Veteran Member


Date Joined May 2009
Total Posts : 506
   Posted 12/26/2009 5:14 PM (GMT -7)   
I had periodic flares for at least a few years before I finally had enough and went to the ER. From what I've seen around here, that's pretty much the norm. You put up with it and deny that anything is wrong until you cannot function anymore.

For the record, colonscopies aren't that bad. The prep isn't much fun but the actual procedure is done under sedation and you shouldn't have any pain and only a little discomfort.
Diagnosed with CD July 2007
Currently on Remicade, Imuran, probiotics, folic acid, multivitamin.
Resection December 2009

Amor fati - Nietzsche


jpnutritionfirst
Regular Member


Date Joined Apr 2009
Total Posts : 383
   Posted 12/26/2009 11:59 PM (GMT -7)   
i know you're reaching for some kind of explanation for what's going on, but don't hope for the IBD diagnosis. I pray you just have IBS. In any case, diet will help you out a lot
Crohn's Colitis diagnosed 6/08
Organic SCD since 4/09
Remicade since 6/09
Boswellia + Natren's Healthy Trinity probiotic + Cinnamon + Wild Oregano Oil + vitamin D + zinc + Barlean's fish oil
Remission


sickandlucky
Regular Member


Date Joined Oct 2009
Total Posts : 253
   Posted 12/27/2009 7:36 AM (GMT -7)   
Agreed with jp... I was almost laughing and cheerful when I was told I had Crohns because I was so relieved it wasn't all in my head. Not so impressed now! I also hope you just have IBS or something that can be cured in a straightforward way. I haven't been a fan of food since my diagnosis either (feeling gross in different ways when you eat, vs. don't eat) but I recommend finding some safe food or meal replacement drink you can tolerate so you can keep your strength up..
Also agree that colonoscopies aren't that bad, I actually had an excellent experience with mine last year. The prep sucks but you get some pretty great drugs during the actual procedure and I didn't feel or remember a thing! Plus my nurse was really kind and that made all the difference for me.
female 19, diagnosed crohns december 2008
entocort/pentasa previously, now prednisone & imuran, probiotics, calcium w/d, digestive enzymes & prenatal multivitamin


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 12/27/2009 9:01 AM (GMT -7)   
Personally for me I was diagnosed in 3 weeks, one of the few to get diagnosed quickly. To be honest Nosilla I have to agree with jp, sounds more like IBS at this point than IBD. Could still possibly be early Crohns, but for your sake I hope its IBS as that can be fixed with lifestyle changes. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Bane
Veteran Member


Date Joined May 2007
Total Posts : 589
   Posted 12/27/2009 4:20 PM (GMT -7)   
When I was first diagnosed, my appetite had dropped to nothing. I lost more than 50 lbs in about a month. It sounds cool on paper but that kind of weight loss can kill you.

I highly recommend you keep eating, even with the discomfort. A while back, I was having a particularly bad flare, and my appetite dropped significantly. I was feeling a little woozy and light headed. I was taking a shower when finally the hunger, light-headedness and heat of the shower combined to drop me like a rock. I lost consciousness, and on the way down to the floor, my back found the faucet. It took me a month of working with the chiropractor to get to the point where I could walk around without pain, and it still twinges every now and then... I suspect it always will.

Such rapid weight loss is dangerous. You need to keep eating. I know how uncomfortable it is, but trust me, in the long run it's worth it. One of the things that helps when I'm having a flare is to eat lots and lots of mozzarella cheese. I usually melt it over spaghetti, or make a quesadilla.


anyway, as for your question, I was diagnosed over christmas break of my junior year in high school. i think. idk, its been a long time, i forget the exact year. anyway, i hadnt been feeling well all month, was having bad diarrhea, no appetite. like i said, i lost 50+ lbs. I still thought I was just having a bad case if D, but my parents noticed the weight loss and took me to the doctor. She ran a few tests, said she thought it could be Crohn's, and sent me over to Mayo Clinic for confirmation. They did some bloodwork, a colonoscopy, and that was that. I officially had Crohn's. Took maybe a week from the first visit to the diagnosis, three or so from first symptoms. I'm lucky, though. I live a mere 20 miles from Mayo's main campus.
21, Male, diagnosed over Christmas Break of my Junior year in High School.


cbk
Regular Member


Date Joined Apr 2007
Total Posts : 134
   Posted 12/27/2009 5:57 PM (GMT -7)   
During my first bout of symptoms, the incompetent doctors told me I just had IBS and/or a stomach virus. I call them incompetent because they didn't see anything during the scope. A year later with different doctors, they told me almost immediately that it was Crohn's and were shocked that the previous doctor confused an inflammed ileum with one that was just being "difficult."
22 Female, currently on MTX. Previously on Imuran, Remicade, Pentasa, etc. Ileocolic resection in 2006.


ragbag
Regular Member


Date Joined Sep 2003
Total Posts : 109
   Posted 12/28/2009 6:56 AM (GMT -7)   
I was diagnosed with Crohn's in the late 90s, but honestly, I had severe symptoms since the mid seventies.  So I really think I went 20 years without being diagnosed correctly.  In the 70s I had all the symptoms that I know now were Crohn's symptoms.  I went to my family doctor several times with the same complaints and the tests showed ''Inflammation of the Intestines''.  Well, that's what Crohn's is, but I'd never even heard of Crohn's until the day I was diagnosed 20 years later.  He told me I had ''what you get before you get an ulcer''.  My dr. told me to drink Mylanta when my stomach would act up, milk to cool it down, and he put me on a couple of drugs to take when needed, Flagl was one...and Bentyl, and he prescribed an anti anxiety drug that I took whenever I got stressed because of course the symptoms got worse then.  So I went along like this for years and the symptoms got so bad when I got into my 40s, but by then I didn't want to go through more tests as I had before only to be told the same thing.  After eating a giant bowl of popcorn one weekend I ended up in the e.r. with an obstruction and it was at that time I was diagnosed with Crohn's Disease.  I later had a colonoscopy to absolutely be sure and although the prep was tiring and wearing, it was a snap.  I hope you have a good doctor and get good news and feel better soon.  I take Pentasa now and have done well since my diagnosis, with only 1 very severe flare since that required me to be hospitalized for 4 days until I got squared away. 

Post Edited (ragbag) : 12/28/2009 6:59:44 AM (GMT-7)

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