Name that side effect

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

LavenderBlue
Regular Member


Date Joined Oct 2005
Total Posts : 168
   Posted 8/13/2008 10:09 PM (GMT -7)   
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
lavender
 
diagnosed: Crohn's Aug 2005
 
other set-backs: Vasculitis Aug 2006, Sub-total Colectomy (10 inches of colon left) Feb 2007, Ogilivie's Syndrome Mar 2007, Pulmonary Embolism Sept 2007, Collapsed lung Oct 2007, Recto/Vaginal fistula Nov 2007
 
drugs: Imuran, Remicade, Prednisone, Fentanyl, Warfarin, Flagyl, Cipro, Celexa, Ferrous Gluconate, Acidopholous


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 8/13/2008 11:32 PM (GMT -7)   
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.

LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1184
   Posted 8/13/2008 11:56 PM (GMT -7)   
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.

Diagnosis Oct 07 and then Aug 08: Patchy Ulcerative Pancolitis or Chrohn's Colitis to be confirmed after biopsy.
Medication: 4000mg Pentasa a day, 5mg Clipper Steroid (Beclometasone dipropionate) for 30 days


ddr030505
Regular Member


Date Joined Nov 2007
Total Posts : 68
   Posted 8/14/2008 6:53 AM (GMT -7)   
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..
23 year old married female Diagnosed Sept '03 still fighting for remission
longest break 9mths; meds: Asacol 6-400mg tabs aday, Iron 40mg; just stopped Humira due to a CMV virus which cause liver elevation
Live Laugh Love, Live by this and you can fight anything!!
There are moments in your life that makes you and sets the course of who you're going to be. Sometimes there little, subtle moments. Sometimes, they're big moments you never saw coming. No one ask for their life to change, but it does. It's what you do afterwards that counts. That's when you find out who you are.
 


aoccc
Regular Member


Date Joined Feb 2005
Total Posts : 455
   Posted 8/14/2008 7:06 AM (GMT -7)   
you can almost take any symptom and find a way to link it to Crohn's lol
SCD since 01, remission since 01, occasional Arby's breaks :)


miguelblanco
Regular Member


Date Joined Dec 2007
Total Posts : 131
   Posted 8/14/2008 7:39 AM (GMT -7)   
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.
Type I Diabetes- 29 yrs. (MiniMed Insulin Pump)
Celiac Disease- 8 yrs.
Crohn's Disease- (Nov. '06)
No meds at this time. (Don't agree with me.)


Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2691
   Posted 8/14/2008 10:00 AM (GMT -7)   
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.
~Jennifer
 
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Prednisone: tapering down again at: 1mg now, Asacol, Questran, Toprol XL (for high blood pressure).


inflamed
Veteran Member


Date Joined Nov 2005
Total Posts : 1340
   Posted 8/14/2008 11:00 AM (GMT -7)   
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 ...
Currently in remission!

Post Edited (inflamed) : 8/14/2008 2:51:15 PM (GMT-6)


jenngrl81
Regular Member


Date Joined Oct 2007
Total Posts : 208
   Posted 8/14/2008 1:40 PM (GMT -7)   
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?
Pentasa- 1000mg/2x 1/08; Percocet
Remicade 1st infusion 7/24/08
Ultram ER 200mg; Prilosec 40mg; Xanax-ANXIETY; Cymbalta 60mg
Entocort 9mg
Probiotic
Ferrous Sulfate 325mg/daily for anemia
Azathioprine 150mg
Currently on a Low-residue diet as of 11/26

I'm so tired, when will this get better?


Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2691
   Posted 8/14/2008 2:57 PM (GMT -7)   
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!! :)
~Jennifer
 
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Prednisone: tapering down again at: 1mg now, Asacol, Questran, Toprol XL (for high blood pressure).


d2parrotperson
Regular Member


Date Joined Aug 2008
Total Posts : 320
   Posted 8/14/2008 3:04 PM (GMT -7)   
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
150mg Azathioprine
Lomotil
Iron
Nexium 2/day
Fentanyl patch
Oxycodone
Baclofin
 
Crohn's, Fibromyalgia, Several bad discs, bone spurs, Osteoarthritis, Osteopenia, Reflux, Stenosis, Stricture
2 resections
 
Stephanie
 
When I am weak, then am I strong


SouthPaw33
Regular Member


Date Joined Aug 2008
Total Posts : 21
   Posted 8/14/2008 5:58 PM (GMT -7)   
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...

broomhilda
Veteran Member


Date Joined May 2007
Total Posts : 1488
   Posted 8/14/2008 6:30 PM (GMT -7)   
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.

Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 8/14/2008 9:47 PM (GMT -7)   
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...
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/15/2008 8:26 AM (GMT -7)   
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.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


mj8dokken
Regular Member


Date Joined Dec 2006
Total Posts : 149
   Posted 8/15/2008 11:36 AM (GMT -7)   
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?) . . .
Bad flare May '06 resulted in CD diagnosis-symptoms for 10 yrs prior.
Asacol: 2400 mg/day
6mp: 100mg/day
Prednisone: 10 mg/day
Entocort: 9mg/day

New Topic Post Reply Printable Version
Forum Information
Currently it is Wednesday, December 07, 2016 3:13 PM (GMT -7)
There are a total of 2,734,289 posts in 301,200 threads.
View Active Threads


Who's Online
This forum has 151323 registered members. Please welcome our newest member, judy.
374 Guest(s), 8 Registered Member(s) are currently online.  Details
cupcakespinkgal, scifigal2k, mp16g08, Almost a 10, mmmk, dbwilco, Cowboy10, peanut307


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer