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Crohn's Disease
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Posted 8/14/2008 5:09 AM (GMT 0)
So, a new crohnie on the site asked the infamous "I've been told I have Crohn's but don't have the normal symptoms" questions.  So I thought, why not start a post about all our weird side effects and symptoms that we've had with Crohn's that might not be considered "typical".  Just to emphasize how different we can all be.

For me I've had shingles which they said was because of my compromised immune system.  And I've also had a pulmonary embolism from sitting too long while flaring in the hospital.  I've had many more strange occurances, but have mostly blocked them from my memory :)

cheers

Posted 8/14/2008 6:32 AM (GMT 0)
I have had occasional events over the last 15 years which I have finally identified as due to Crohn's. Those events were exteme fatigue and "brain fog" with loss of appetite. There was no memorable diarrhea or constipation and no gut pain. My most obvious problem was diagnosed as GERDS and I ended up on Pariet for extended periods. I have also had a sinus problem which I think is related and a minor irritation of the throat or larynx. I was also getting a lot of nuisance aches and pains - tendinitis, shoulder and hip pains, random joint swelling. My diet has generally been different - vegetarian for many years (But no longer) - and I went to a naturopath for advice about the GERDS and got a diet plan that helped a lot, but I did not quite follow it as strictly as I might have. With the diagnosis of Crohn's, I have been able to completely eliminate most of those symptoms and reduce the longest-standing ones by following the SCD plan. No drugs, no surgery and currently in remission. I realize that I have been very lucky, but I am sure that diet has made all the difference.
Posted 8/14/2008 6:56 AM (GMT 0)
Bleeding from the rectum on toilet tissue, stools and sometimes on it's own! - bright red blood.
Diarrhoea or soft small stools but only say 5 or 6 BM's a day.
Feeling of mild fatigue.

No pain, No neusea, No Sickness.

Am investigating diet with a Naturopath.

Otherwise I am well and confused that I am not as ill as my "Moderate Chrohn's" suggests.
Posted 8/14/2008 1:53 PM (GMT 0)
Well..
Caught the cytomegalo virus ( i was told it was because i was on entocort and humira and had a weak immune system) which caused- elevated liver and enlarged spleen(all normal now)
Hip, low back , ankle, neck pain, fatigue, headaches, dizzy at times, bubble stomach,
when in flare, diarrhea, nausea, gas, cramps (10x worse then menstrual cramps

they think arthritis is in my future..
Posted 8/14/2008 2:06 PM (GMT 0)
you can almost take any symptom and find a way to link it to Crohn's lol
Posted 8/14/2008 2:39 PM (GMT 0)
My recent "odd" symptoms:

My feet like to swell up on me now. I get swelling along with discolored/ bruised looking areas where the swelling is. First time it was the ankles. This time it feels like my middle toes are broken and there is bruising above them.

TMJ like jaw pain/stiffness. Never had any jaw problems before.
Posted 8/14/2008 5:00 PM (GMT 0)
My most non-typical was Angioedema, which was swelling up of my lip and thumb. Doctor tells me it was related to the high levels of inflammation in my body.
Posted 8/14/2008 6:00 PM (GMT 0)
I'm a crohnie who doesn't get D or C. I do have a stricture that has led to partial obstructions and had a fissure at one time. That's it for GI symptoms.

As for unusual symptoms-- keratitis (inflammation of the white of the eye), fatigue/haze ...
Posted 8/14/2008 8:40 PM (GMT 0)
BRAIN FOG is right on! I seriously feel like I've lost a couple dozen IQ point since being on meds since last September, it's awful! I did have one incidence where my bottom lip swelled out of nowhere, it was just like a scene from Nutty Professor 2: Meet the Klumps. It's where Eddy Murphy is turning from Buddy Love back to the professor and gets a huge fat lip. Please tell me I'm not the only one that's seen that movie?
Posted 8/14/2008 9:57 PM (GMT 0)

jenny26_1981 said...
BRAIN FOG is right on! I seriously feel like I've lost a couple dozen IQ point since being on meds since last September, it's awful! I did have one incidence where my bottom lip swelled out of nowhere, it was just like a scene from Nutty Professor 2: Meet the Klumps. It's where Eddy Murphy is turning from Buddy Love back to the professor and gets a huge fat lip. Please tell me I'm not the only one that's seen that movie?

Thank you for posting that! I always feel so alone with having that happen to me! But yes, I've seen the movie, and it was actually a joke my DH made to me that day when he saw how big my lip got. It was HUGE, and I completely freaked out. Thought I had to have had something horribly wrong with me. Took two doctor visits for my doctor to convince me it was Crohn's related, and that my SED rate was off the charts. Just such an odd symptom to have you know? So glad I'm not alone!! :)
Posted 8/14/2008 10:04 PM (GMT 0)
Brain fog, nausea, intense pain, fibromyalgia, dizziness, iritis, reflux, shingles (once), severe weakness, range of issues from pred use, short term memory loss (mild), much bone, joint, muscle pain, chronic diarrhea, blood, chronic iron deficiency, swollen belly, hair loss, malabsorption, fevers, swollen feet, legs & hands, VERY restricted diet, headaches, TMJ
Posted 8/15/2008 12:58 AM (GMT 0)
not sure if it is from the crohn's or meds, but when first dx'd I would wake up with my pillow covered in blood from nose bleeds. I would also have nights sweats so bad that I would have to sleep in my tub on occasion{closer to the toilet anywho}.... and I believe the brain fog is from the doctors completely filling us up with medical jargon that causes most crohnies to lose sleep because of the fear of the unknown... that and frequent trips to the white horse in the middle of the night. I would like to find one crohnie that gets a perfect nights sleep and shake his or her hand off, because they are probably cheating this nasty disease!!!! A good 8 hours of sleep feeds and powers the mind and I haven't had that in over ten long long long years...

Posted 8/15/2008 1:30 AM (GMT 0)
Strangest, but I'm sure not uncommon...saiety issues.  Sometimes I can't tell if I am actually hungry or not until I start to eat.  Then you would think I was still on prednisone whereby most of us are starving while on this me.  Not a good symptom for me considering I am also hypoglycemic.

Posted 8/15/2008 4:47 AM (GMT 0)
I seem to be drawn to a web site with a lot of sick people. Its like a home away from home. I cant explain it. It must be the remicade...
Posted 8/15/2008 3:26 PM (GMT 0)
Southpaw hate to let you down, but I generally sleep 7-8 hours a night. I occasionally will wake up to go to the BR, but generally go right back to sleep. I think the wake up thing is because I am getting older and as you age you tend not to sleep thru the night without at least one wake up. I also have always had a milder form of Crohns, although sometimes I don't necessarily feel mild.
Posted 8/15/2008 6:36 PM (GMT 0)
I've had swelling and stiffness of the joints, episcleritis (inflammation of the white of the eye), abcess, fistula, D (though in remission at the moment), I know there's been more but I'm drawing a blank at the moment (Brain fog?) . . .
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