What were your first symptoms, before diagnosis??

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Richard Webb
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Date Joined Feb 2009
Total Posts : 5
   Posted 2/26/2009 10:24 AM (GMT -7)   
I am curious to see what everyones symptoms were. I am sick now and think I have Crohn's. Still waiting on my GI doc to call me back in for a colonoscopy.

Veteran Member

Date Joined Aug 2007
Total Posts : 884
   Posted 2/26/2009 10:46 AM (GMT -7)   
Very bad stomach pains.  Nothing showed up on colonoscopies (and endoscopies just showed gastritis and GERD) and it went undiagnosed for 8 years until we did a capsule endoscopy. 
Crohn's Disease, Acid Reflux/Gastritis, Hashimoto's Thyroiditis, Endometriosis, Arthritis, Depression/Anxiety.  Too many meds to list them all.  =) 

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Date Joined Aug 2008
Total Posts : 305
   Posted 2/26/2009 10:50 AM (GMT -7)   
I was 19 and had a bout of constipation for 2 weeks. Very unusual for me back then. Then started having diarreah for about 2 weeks. The day before my Dr's appointment I noticed traces of blood. I was in the hospital for 5 days while they ran tests and was diagnosed with ulcerative colitis. They treated me and I was symptom free for 10 years until I had another flair up. Then I was rediagnosed with Crohn's. Been a rollercoaster of screaming fun ever since. Best of luck and don't stress out over this. You have a million friends here who know exactly what your feeling and we can attest that life may be difficult at times with Crohn's but it's still manageable and not all bad. Keep your chin up!
Crohns 30 years. Ileostomy for 15 years. Symptom free for 14 years until 6 months ago. Now on Remicade and iron. Feeling like a champ!
God Bless. Tony

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Date Joined Apr 2005
Total Posts : 14995
   Posted 2/26/2009 10:58 AM (GMT -7)   
Mine started with horrid abdominal cramps, then diarrhea, the passing nothing but mucousy blood, then eventually vomiting everything up. Good luck!
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"*

Regular Member

Date Joined Feb 2009
Total Posts : 66
   Posted 2/26/2009 11:07 AM (GMT -7)   
Hi, sorry to hear you are unwell...

As to first symptoms - I made a lovely pizza one day for dinner with LOTS of onions in it and had bad stomach pain for several days after that. Since I was pregnant at the time, docs thought I was being just another woman who doesn´t take her pregnancy well.
Three weeks later, I felt constant pain under the ribs on my right, someone pointed out it could be appendix and I went to hospital for a blood test. Inflammation levels were crazy and they gave me a ultrasound to see, didnť like what they saw and I had surgery within two hours. And there they saw it was Crohn´s ...

Good luck to you, I am aware I was lucky to get diagnosed that quickly and that it might take a long time...
Diagnosed with Crohn´s in 2005, 3 surgeries, currently 39 weeks pregnant with second child. Pentasa 2x2, Budenoflak 1x2, 30 yrs old

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Date Joined Mar 2006
Total Posts : 1169
   Posted 2/26/2009 11:11 AM (GMT -7)   
Beginning abuot age 19, had periods of urgent explosive D. Had barium lower GI xrays (this was before colonoscopies) and diagnosis was 'nervous bowels." This continued periodocially until I had a massive GI bleed at 32. Scope and biopsies then showed Crohns.

Veteran Member

Date Joined Jul 2005
Total Posts : 669
   Posted 2/26/2009 11:46 AM (GMT -7)   
Mine started two months after 9/11. I was working in a post office at the time and was extremely stressed about the whole anthrax thing. I had to wear a mask which made me hyperventilate and breathe even deeper than I normally would not wearing one. One day found some white powder in a box and had to have it analyzed (turned out to be fertilizer).

Anyway, that's about when the lower abdominal cramping began. Every day. Eventually it became worse and worse. Then came the mid-gut clenching, then the loss of appetite. Then I was working with a gp doctor who I swear was out to kill me. I dropped to 83 lbs. before he let me see a gi doc. The gi doc admitted me to the hospital the first time he saw me. I was diagnosed the next day.

So, I was sick for three months before I could see a gi doc. I was so sick that I couldn't even do a prep for the colonoscopy. The doc figured I was probably cleaned out enough, as everything I put in my mouth ran right through me. So my diagnosis was very fast once I was in the hands of the right doctor.

Elite Member

Date Joined Feb 2004
Total Posts : 20577
   Posted 2/26/2009 12:12 PM (GMT -7)   
Mine started externally with perianal crohn's skin tags that were mistaken for hemmies....I had them banded (as they do with hemmies) and that just made things worse of course for my disease....I didn't start with having explosive and excessive D either which is often typical, my bowel movements were still formed and normal looking but I started noticing I was having more than my usual one poop a day and they were very close together, maybe only about 1/2 hour apart from one another and that was completely foreign to me....then of course in a short period of time it turned into severe D with continuing anal tag issues...needless to say, I was easily DX when I saw a GI for the very first time (which was about a few weeks after my "hemmie" (that I never had) surgery.

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

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Date Joined Feb 2009
Total Posts : 529
   Posted 2/26/2009 12:13 PM (GMT -7)   
Mine just started out of nowhere one day. It was about a year ago, when I was 19. I was extremely stressed, and alone on my way to a foreign city. I got really bad stomach pains on the way, combined with bad diarrhea...thought it might've just been nerves, but it continued for my whole trip. I couldn't go anywhere, was stuck in my hotel with horrendous diarrhea and waves of pain. about 2 weeks later I started vomiting a few times a day. It went away on it's own that time for a few months. Came back out of nowhere in the fall/winter, but it didn't go away that time... Diarrhea, felt like I couldn't completely empty my bowels, vomiting up to 10 times a day, lost 15 lbs in a week (down by 20 now..87 lbs at the moment :/), crippling stomach pains, extreme fatigue... I finally got diagnosed about a month ago, and just started my treatment last week. They were looking at the wrong end of me, kept focusing on the vomiting, thinking it was my stomach, and ignoring my intestines. The doctors I have now seem to know what they're doing, though.

I didn't have much blood - The only blood I remember seeing was when I wiped a few times, but then there were 2 days where I had blood clots passing. Not sure what that was about yet though, hah.

I also don't consistently have diarrhea - it alternates between that, normal looking stools (a bit on the narrow side, though) and thin, ribbon-like ones. Seems to depend on the day.

Regular Member

Date Joined Jul 2004
Total Posts : 422
   Posted 2/26/2009 12:49 PM (GMT -7)   
I'm sorry to hear you're not feeling well. I think we would all agree that intestinal sickness is the worst. Don't worry yourself, though, until you have all the necessary tests to come to a conclusion of Crohn's Disease. You might be suffering from something that's actually curable.

The symptoms I had starting out all took place over a 2-year period of time:

Small dry cough.
Stomach ulcer...Dx with GERD.
Several loose bowel movements/day (1-5)
Urinary Tract Infections.
More loose bowel movements/day (5-10)...Dx with IBS.
Swollen ankles for a month I couldn't walk on.
Painful back spasms (which was actually inflammation of my tendons).
Rapid weight loss.
More loose bowel movements during the day and now waking me up at night...10-20x/day. Mucousy.

Family doctor realizes the overnight LBM's aren't supposed to be happening because your body is suppose to sleep at the same time you do. Next comes in the GI. An Upper GI with Small Bowel Follow Thru & Abdominal CT Scan are ordered. After those results, an Upper Endoscopy, Colonoscopy and bloodwork are ordered. All of those tests were done within 2 months. So although it technically took only 2 months to Dx me with Crohn's once all the right tests were ordered, it actually took 2 years to be Dx after my symptoms started.

Oh yeah, and I was also vomiting occasionally during these LBM's...or dry heaving.

Diagnosed in October, 2004 at age 32.
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

Veteran Member

Date Joined Dec 2005
Total Posts : 1768
   Posted 2/26/2009 12:54 PM (GMT -7)   
Mine started out with a lot of heartburn, and intense pain in the right lower abdomen, alternating diarrhea and constipation, and weight loss. They put me on some sort of acid reducer, which helped the heartburn. My doctor did an ultrasound, and saw that I had an ovarian cyst, so for a while, I was treated for that with pain meds. After a repeat ultrasound showed no cyst, and the pain was still going on, I was sent to a GI who ordered a CT. I had an abcess, my appendix had ruptured, and I had barium outside my intestines. Needless to say, I was admitted to the hospital and taken for surgery soon after. From the start of symptoms to surgery was only about a year. Thank God I had the CT when I did, because I could have gotten much worse really quickly, or even died had I not been treated when I was!

I hope the colonoscopy helps your docs diagnose and treat you soon! Good luck!

31 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05
Currently on Humira, Prilosec, Effexor, Calcium, Vit D, sublingual B12

Regular Member

Date Joined Feb 2009
Total Posts : 39
   Posted 2/26/2009 2:30 PM (GMT -7)   
I had recurring bouts of intense cramping and diarrhea. My abdomen was also very tender. This occurred 2 to 3 tiimes per year for 20 some years (several doctors brushed me off). The bouts would last about a week or so. I just "gutted it out". Eventually I spent a week with gas trapped just below the rib cage. After no sleep for days, I went to the ER. After ruling out appendicitis, they did a cat scan and finally got the dx. I saw a GI the next day and have seen him since. Over the years the dx has been confirmed by a barium xray. A routine colonoscopy by the same GI showed no confirmation of crohn's, hence the barium xray that showed scarring.

best of luck.

Regular Member

Date Joined Feb 2009
Total Posts : 46
   Posted 2/26/2009 2:47 PM (GMT -7)   
Mine started with a wierd rash on my right hand and horrible stomache pain and cramping. I was drinking 1-2 bottles of pepto or malox a day to try and calm my stomache. This went on for 4-5 months i just toughed it out. then i went to the ER and they ran tests blood, CT scan, barium x ray etc... and told me it was diverticulitous and eat more fiber. Fiber was a bad idea and sent me in a tail spin of pain. I met with a GI doc and that is when they finally did a colonoscopy and found crohns. After the colonosocpy i was in intense pain and they still sent me home. 9 hours and an ambulance ride later i was back in the hospital with a deluaded pain pump for about 5 days.
All i can say is DONT WAIT!

best of luck
Crohn's since June 2005
Relapse/flare up since Oct. 2007
Been on Pentasa, Asocol. Prednisone, Entocort, Imuran, Protonix, various anxiety meds, painkillers
Humira for 1 month from July 2008-Aug 2008 then contracted histoplasmosis and was in hospital for 11 days in Aug. 2008

Surgery scheduled for March 6th 2009

Veteran Member

Date Joined May 2007
Total Posts : 1284
   Posted 2/26/2009 3:13 PM (GMT -7)   
Well... I don't think the bathroom problems for me started until sometime after I was diagnosed... But then, I've had constipation problems since I was a kid, so there's a chance I just never noticed... My first symptom was pain... It started during a school day... I thought it was a simple stomachache... It got worse as the day went on... By the time I got home, I was in so much pain that I had curled up in a ball on my bed...

When I first got to the hospital, the doctors there thought it was appendicitis... However, when they started to cut on me, they noticed my colon was inflamed and didn't take out my appendix because they didn't want to accidentally do damage to my colon... I saw a GI doctor at the hospital who just handed me a medicine... and a different doctor (the surgeon, actually)... told me that the GI doctor thinks I have Crohn's... I got scheduled for a colonoscopy...

So... about a week or two later... on November 17th... I got a colonoscopy and I was diagnosed with Crohn's disease...

Once I went to a hospital that told me I didn't have Crohn's disease.... then after they saw the results of an MRI they did on my abdomen... they retracted that statement, apologized, and said I did have Crohn's... //@.@\\'... Crazy people.
I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.

Regular Member

Date Joined Feb 2009
Total Posts : 62
   Posted 2/26/2009 3:24 PM (GMT -7)   
This post has actually made me think back a little. I was diagnosed at age 10. I remember constant "D." Horrible stomach cramps, weight loss, and ulcers in my mouth. As I think back, it seemed to be like someone flipped a switch. In the 4th grade, I was the track girl. 2nd fastest 500 meter run. And by 5th grade, I couldn't walk home from the bus stop without stopping at a construction site or having an accident. (My bus stop was like 1/2 mile away but it was still pretty bad.)

Hope you will better soon.
Crohn's Disease
Diagnosed at age 9 in 1980
1st ileosecal resection 1989
2nd colon resection 1993
Chronic "D" and arthritis
Chronic rectal stricture with colonoscopy every 3 months to dialate
Insomnia since 1980 - I love my ambien!
SCUBA diver, Master's degree student, college graduate, Pet therapist

Veteran Member

Date Joined Jan 2009
Total Posts : 832
   Posted 2/26/2009 3:27 PM (GMT -7)   
my first symptoms where cramps and constant D then i lost like 30 lbs in two months and could not gain one pound back :(
Then i started having BM like 20-30 times a day, then fresh blood started coming with the stools :(
24 year old female
Diagonsed with Crohns disease in December 2008..
Medication - Asacol, Remicade, Entocort

New Member

Date Joined Feb 2009
Total Posts : 3
   Posted 2/26/2009 6:28 PM (GMT -7)   
it all started very randomly and really just scared the hell out of me, it was about 2 years ago now and i would wake up every day for maybe 3 or 4 months and violently vomit everything i was holding in me along with of course the usual bouts of C or D whichever my body felt like throwing at me , now it seem to "go away" every once in a while and i dont vomit as much anymore (probably because i dont eat nearly as much as i used to) now its just a guessing game as to how im going to wake up and get through the day

Regular Member

Date Joined Feb 2005
Total Posts : 421
   Posted 2/26/2009 7:39 PM (GMT -7)   
Mine started at 19, I would run for the washroom, vomiting anything I ate. Lost about 30lbs, Dr. and family thought I was "bulimic". Then I had a fissure, and surgery to correct it. about 6 months later while home for Christmas I had massive bum pain and couldn't get out of bed. Shaking and muscle spasms (Septicimia...sp?) Ended up in emerg. with 2 anal fistula's. 1 side took 6 feet of packing, the other 8 feet. Worst darn Christmas EVER! *grin*

RX Crohn's 1999, over 30 surgeries, 3 strokes, still kickin!!
"The most unfortunate thing that happens to a person who fears failure is that he limits himself by becoming afraid to try anything new."

Julia Hill
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Date Joined Mar 2008
Total Posts : 560
   Posted 2/26/2009 7:57 PM (GMT -7)   
I was 18 years old and had D and cramping for one year when I developed a fistula. I had all of the tests and it was crohn's. I hope you don't have crohn's, but having a diagnosis for your illness is half the battle.

All the best,

Regular Member

Date Joined Sep 2007
Total Posts : 160
   Posted 3/4/2009 5:54 PM (GMT -7)   
constant diahorrea weight loss really bad cramps spending days and nights with head down the toilet both ends now im thinking of installing tv in bathroom seeing as i spend half my life in there!perhaps a nds in there as well lets face it you could be in there for hrs days weeks.

Veteran Member

Date Joined May 2007
Total Posts : 589
   Posted 3/5/2009 1:04 AM (GMT -7)   
Fatigue, D, loss of appetite, bloody stool, severe weight loss, nausea, in that order. my flares still follow the same pattern. i also have a history of losing consciousness when im hot/tired/hungry, so if the flares last for too long i become extremely weak and am much more prone to such episodes. i hurt my back on my last major flare because my shower was too hot and i smacked my spine into the faucet on the way down. thank god for chiropractors.
21, Male, diagnosed over Christmas Break of my Junior year in High School. BEST CHRISTMAS EVAR LOL

(not really)

Regular Member

Date Joined Feb 2009
Total Posts : 33
   Posted 3/5/2009 5:14 AM (GMT -7)   
I was 17 when I first had symptoms. Everytime I went to the toilet it was incredibly painful, blood and mucas. Once I had been to the toilet I was then sore for the rest of the day and spent the day sitting on a pillow. 6 weeks in hospital and diagnosed with crohns which had caused ulceration and fistulas in between the muscles of the butt cheeks so everytime I "pushed" it crushed the ulcers. Had a colostomy and problems disappeared for a year. Until I then started to feel incredibly tired and chronic stomach pains. This has now continued for nearly 7 years. Has anyone else had similar experience? My symptoms now are stomach pains, and incredible fatigue which is hard when I am trying to forge a career in Sports Development!
24 year old male from London
Crohns since 2002, Colostomy in 2002 and Small Bowel Resection 2005
Have tried Infliximab (Remicade) and Adalimumab (Humira)
Numerous spells on Prednisolone 40mg, Suspected Abscess in June 2007 - treated with antibiotics
Flare up in Feb 09 resulted in 2 week hospital stay
Now out and on Modulen - no food for ideally 8 weeks ARGH!!!!!
Also on Azathioprine 125mg

Regular Member

Date Joined Jan 2009
Total Posts : 209
   Posted 3/5/2009 5:38 PM (GMT -7)   
D for a couple of weeks
High white blood cell count
Couldn't keep anything down
General overall weakness
Severe intestinal cramping
Dramatic weight loss...
diagnosed 1981
remission until 2006
Entocort, 6mp,Hydrochlorothiazide
Remission since surgery
and 8-week Remacade.
d since 1981(enjoy the look
on Dr's faces)

Regular Member

Date Joined Apr 2007
Total Posts : 345
   Posted 3/6/2009 11:46 AM (GMT -7)   
I got an intestinal virus (puking and D). After that it seemed like the D part of it never stopped. Eventually I stopped eating because to eat meant to run to the bathroom with crampy D.

Question for you Richard, does anyone in your extended family have Crohns or Colitis? It is familial. For example my great Aunt has Colitis and my cousin was just diagnosed with Crohns.
33 years old. Diagnosed in 2002ish. 
Taking Asacol, Lomotil TID, and on Remicade since 2004. 
Lower Bowel area only, except for the short stint (about 2 weeks) that I had mouth sores.  Also have external/anal fistula and anal/vaginal fistula. 

Veteran Member

Date Joined Jul 2008
Total Posts : 674
   Posted 3/6/2009 12:04 PM (GMT -7)   
I had lost a huge amount of weight in a very short period of time.  I would take one bite of food and I had an instant stomach ache- sharp pains.  I would sleep forever.  Lack of energy.  I would sleep sitting up holding a pillow, because to lay down hurt too much.  And the night I was diagnosed  I was vomiting all day, I couldnt keep anything down, then I started throwing up stomach bile.  Rushed to the ER, had an emergency resection. I had been sick for over a year prior to that though.
Dianogsed with Crohns: At 16 years old. 22 years old now.
Surgeries:2 Bowel Resections, Gallbladder Removed.
Current Meds: Humira (bi-weekly)
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