What was your first symptom?

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

Regular Member

Date Joined May 2009
Total Posts : 20
   Posted 5/10/2009 7:55 AM (GMT -7)   
Once I was diagnosed, I could attribute just about everything that had ever been wrong with me to CD.
I guess the main first symptom was waking up one morning (several years before diagnosis) and not being able to walk due to pain through my left hip - if felt like it was dislocated.  I went to an immediate care place and they diagnosed sacro-iliac dysfunction and they gave me a lot of strong ibuprofen and recommended I see a chiropractor.  It took a long time and a lot of ibuprofen to get rid of the pain when walking.  In hindsight, I cringe at how much ibuprofen I was taking.  Being 24 at that time and in great physical shape with no recent sports injuries, I believe that was my first doctor-requiring symptom of CD, although that particular diagnosis wouldn't come along for another 6 years.
What was the first symptom you can think of?

Veteran Member

Date Joined Oct 2005
Total Posts : 1250
   Posted 5/10/2009 8:46 AM (GMT -7)   
Diagnosed with Crohn's March 2006, Fibromyalgia Nov. 2008, Anxiety Disorder since childhood
Asacol 3 times a day, Remicade 10mg/kg every 4 weeks, Prednisone 10 mg, Miralax,  Prevacid 30mg, Vit B12, Vitamin D, Slow-FE (Iron), Hydrocortisone enemas
Imuran stopped 9/8/08 (possible Pancreatitis)
Paxil 40mg daily (for Panic disorder)
Xanax .5mg three times a day, 1mg at bedtime (for anxiety attacks)

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 5/10/2009 8:50 AM (GMT -7)   
I was a perfectly healthy teen, didn't have stomach problems or nothing. Then right about my 18th birthday I started getting really bad cramps that would come and go and about drop me to my knees. Then shortly there after I started getting really bad diarrhea that just got worse from there. I am one of the lucky ones who got diagnosed within 3 weeks of my symptoms starting.

I injured my neck the year after I got diagnosed. I was a nurse in a geriatric hospital and I lifted a patient and injured my neck. Funny thing is I recently found some records in my mom's house from a workmans comp doctor trying to say my injury was from my Crohns. HA!! to him, as I had not only 1, but 2 herniated discs in my neck that eventually I had to have surgery to fix.

I didn't start developing the Crohns related arthritis until about 20+ years later.
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Veteran Member

Date Joined Jan 2006
Total Posts : 768
   Posted 5/10/2009 9:01 AM (GMT -7)   
I had a tender stomach as a child and didn't like to wear things too tight on my waist. Then had diarrhea when I ate certain foods for years. Never paid much attention to it. Was told I had IBS for years and took GI relaxation pills. Finally diarrhea all the time and blood and two years they couldn't decide. When it finally got so bad I couldn't function I had a scope at age 48 and was pronounced Crohns.

Veteran Member

Date Joined Jan 2009
Total Posts : 832
   Posted 5/10/2009 9:03 AM (GMT -7)   
I started loosing weight 30 pounds in 3 months.
Got lot of diarrhea

Then I started getting cramps and then the blood came.
24 year old female
Diagnosed with Crohn's disease in December 2008..
Medication - Asacol, Remicade, Entocort, Cipralex and Cerazette.
My wonderful dogs :) ~ www.poodle.is ~

Regular Member

Date Joined Dec 2007
Total Posts : 414
   Posted 5/10/2009 9:15 AM (GMT -7)   

In hindsight I can see that I actually had some symptoms from the age of about 9 or 10 - frequent 'stomach bugs', joint pain which at the time was put down to growing pains, horrific pains when I had periods but no 'proper' flare ups.

My first 'proper' flare up which lead to my diagnosis was when I caught a stomach bug which was going around school - everyone else got better and I got worse and landed in hospital and diagnosed with Crohn's. But I can remember about 2 weeks before I got the stomach symptoms I was playing tennis and had to stop as my wrists were killing me so bad I thought they were both sprained or something, a couple of months later the wrists were diagnosed with arthritis along with Crohn's. With my past flare ups my joints tend to flare before I get stomach symptoms so I'd say my first symptom was the wrist pain!


Veteran Member

Date Joined Feb 2009
Total Posts : 529
   Posted 5/10/2009 9:46 AM (GMT -7)   
Was on a Greyhound-type bus to Toronto (6 1/2 hour bus ride), suddenly had the worst stomach pains and horrible D. Spent the whole weekend in my hotel room vomiting, on the toilet and wishing I could cut my insides out of my body. That was just over a year ago, when I was 19.

Elite Member

Date Joined Feb 2004
Total Posts : 20577
   Posted 5/10/2009 10:35 AM (GMT -7)   
My CD started with perianal crohn's skin tags which were misDX as being hemmies.

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

Regular Member

Date Joined Aug 2008
Total Posts : 305
   Posted 5/10/2009 10:40 AM (GMT -7)   
I guess I didnt realize how common the arthritis thing is with Crohn's. I have it too but mine didn't start till I was 40 and I was diagnosed with Crohn's at 19. My arthritis is so bad now I've been on SSDI for the last 2 years. I had D for 2 weeks and then some blood at 19, thats when I was diagnosed. It went into remission for 10 years then came back. after surgery it went into remission again for 14 years then came back last year. This is one unpredictable disease!
Crohns 30 years. Ileostomy for 15 years. Symptom free for 14 years until 8 months ago. Now on Remicade, B-12 injections and iron. Feeling much better!
God Bless. Tony

Regular Member

Date Joined May 2009
Total Posts : 20
   Posted 5/10/2009 10:52 AM (GMT -7)   
pb4 said...

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

Regular Member

Date Joined May 2009
Total Posts : 65
   Posted 5/10/2009 11:00 AM (GMT -7)   
First I knew I had it was after emergency surgery for suspected ruptured appendix - no symptoms except bad pain and feeling nauseous up to then. I've been in hospital twice since then for obstructions - same symptoms but naively I never thought this was Crohn's - just complications from original surgery. Inbetween I have occasional bouts of diarrhea and pain but have largely coped with these and led a very active life until 10 weeks ago...........resection!  shocked   I too had been taking lots of Ibuprofen for flu and back pain, and was also a heavy smoker - I haven't been under a gastro doctor for many years so I had no idea these were really bad for CD
funnily enough  symptoms had been bowel spasms which I hadn't experienced before and put down to stress -but what took me to the doctors was again right sided pain and feeling nauseous. rolleyes
I wish there was some alarm bell that has sounded earlier - I just don't seem to have had the route that so many of you have experienced, and I genuinely believed that I had had Crohn's once out of bad luck and any problems since have been because of scars!!!!!! Now I'm getting paranoid about every little twinge or if I haven't been to the loo enough!! :-)
Penny xx

Veteran Member

Date Joined Apr 2008
Total Posts : 1753
   Posted 5/10/2009 11:23 AM (GMT -7)   
Mine was bad stomach pains and losing a lot of mucus. I also had really bad acid problems which I guess could be contributed to what I now know is a hiatal hernia, but it definitely did not help things. I didn't have any D until about 4-5 months after things started. It all just went downhill from there.
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 10 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, prenatal multivitamin, humira every other week, and Align probiotics given to me by my GI.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Diet almost completely without refined sugars, wheat, flour, gluten, high lactose dairy, and/or junk food in general.
Learning how to live again.
"He who has a why to live for can bear with almost any how."

Veteran Member

Date Joined Mar 2009
Total Posts : 1118
   Posted 5/10/2009 11:48 AM (GMT -7)   
Hi i was constantly tired with stomach pains every time i ate something then the big D Bev x

Elite Member

Date Joined Feb 2004
Total Posts : 20577
   Posted 5/10/2009 12:15 PM (GMT -7)   
ImInIN said...
pb4 said...

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

Veteran Member

Date Joined Nov 2005
Total Posts : 1340
   Posted 5/10/2009 12:30 PM (GMT -7)   
First symptom I paid attention to: a blockage. Symptoms I ignored for years before that: loss of appetite/weight/energy, sick after eating, stomach pain
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.

Regular Member

Date Joined Sep 2008
Total Posts : 457
   Posted 5/10/2009 1:25 PM (GMT -7)   
I was about 22 and going through a bad break up. I had such severe D that I lost 20 lbs. My throat muscles were so swollen that I could barely swallow. My family and doctor chalked it up to stress. Finally I went to a new family doctor and was dx with Crohns after one scope.

Dx'd with Crohns 1984 and polycystic kidney diease in 1996
I was in remission for 16 years, Bowel Resection surgery 2006, Now on Asacol, folic acid, and Enalapril, Have been flaring on and off since August.
I love my life and everyday I pray that my body cooporates and allows me to do what I have planned.

Regular Member

Date Joined May 2009
Total Posts : 20
   Posted 5/10/2009 1:56 PM (GMT -7)   
It's very interesting to hear about everyone's first symptoms - thank you all for your responses :)

Regular Member

Date Joined Apr 2009
Total Posts : 111
   Posted 5/10/2009 2:42 PM (GMT -7)   
Severe upper-right quadrant abdominal pain. It is still my primary symptom.
Diagnosed with Crohn's in 2008 at the age of 22.
Currently taking: Azathioprine, tramadol, welchol, promethazine
Surgeries: Cholecystectomy (2007)

Regular Member

Date Joined Feb 2009
Total Posts : 161
   Posted 5/10/2009 5:32 PM (GMT -7)   
My first acute symptom was a sudden onset of excruciating abdominal pain and feeling like I either needed to vomit or have diarrhea. It eased within an hour or so. I figured I had just eaten something that didn't agree with me and wanted out quickly. I was diagnosed about a year later after several more similar but longer-lasting episodes.

I had been more or less ignoring some occasional cramping/diarrhea/bleeding for several years, assuming that I just had IBS like my mother and sister.

Veteran Member

Date Joined Aug 2007
Total Posts : 1202
   Posted 5/10/2009 7:43 PM (GMT -7)   
Bloody, urgent stools with mucus... Scary! It is interesting to hear all the ways that this disease presents. No wonder dx is so difficult at times!
--40 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine  --rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone, Tysabri
--Prochymal in Phase III study (can't wait til it's approved!)
--currently taking methylprednisolone 40mg-taper.  Started Cimzia first dose 2/10/09.  Dx Osteoporosis 10/08 started Forteo 1/27/09
--single mom to 11-yr-old girl

Regular Member

Date Joined Feb 2004
Total Posts : 122
   Posted 5/10/2009 8:09 PM (GMT -7)   
I got mucus at first, then I started getting stomach ache. I only had some idea of what it was when I mentioned the mucus to my mum and she had ulcerative colitis, so she said it sounded like what she had and to go the doctors. I then started bleeding and got admitted to hospital for a week with really bad stomach pains and weight loss.
37yr old woman UK. Diagnosed with crohns in 95. Currently on 2400mg asacol, 100mg Azathioprine. Been on Remicade once which worked well for me, but they took me off it. Flared up again. Took Humira but it didn't seem to agree with me, but thinking it was now an infection rather than side effects from Humira. Now back on Remicade, had 3 infusions so far and no reactions as yet. Consultant wants me to have a colostomy bag fitted, I've refused and want to try as many options as possible. On Elemental 028 extra diet for 6 weeks.

New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, January 20, 2018 2:27 AM (GMT -7)
There are a total of 2,919,126 posts in 320,309 threads.
View Active Threads

Who's Online
This forum has 159369 registered members. Please welcome our newest member, Ingridea.
314 Guest(s), 0 Registered Member(s) are currently online.  Details