Crohn's Disease Forum » General IBD Discussion » Initial Crohn's Symptoms

08-15-2010, 12:02 AM   #1
Bennie Bob
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Initial Crohn's Symptoms

Hello all,

I have been reading a lot online (both on this forum, and online in general). I am not sure if I have crohns, IBS, or some other issue, but I am going to make a doctors appointment soon if it doesn't get better.

My question is this: What were your exact symptoms that you had when you first found out you had crohns?

I have read the common symptoms a dozen times online, but I would love to hear from you personally.

Was it bleeding? Severe stomach pain? Vomiting? Diarrhea? All of the above? or something else? Were the symptoms non-stop, daily, or random?

Thanks and I look forward to hearing about your symptoms.
08-15-2010, 05:37 AM   #2
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Hi Bennie and welcome to the forum!!

Well as you probably already gather everyone is different with what they experience with this disease, following are the symptoms I was experience when I first got dx;

*vomiting, D to begin with but yoyo between D & constipation (I wouldn't have D everyday but sometimes just have it straight after eating or first thing in the morning for a few hours), bloating (looked like I was preggas all the time), uncomfortable feeling on right side of tummy (but not bad pain), extreme lower back pain (my worse symptom), no appetite, trouble sleeping/tired all the time (as my lower back and stomach area seemed to throb and then make me want to throw up), reflux & felt like I had a lump in the back of my throat.
I had no bleeding at all tho.

Hope this helps some what.

Edit: I should mention also that the lower back pain was more on the right side which is where my ulcers where found and also I had weight loss as well. Since being dx I have swung between mild joint pain to extreme. Also all my blood test have always come back normal even when I had alot of inflammation.

Last edited by Tan; 08-15-2010 at 10:42 PM.
08-15-2010, 05:51 AM   #3
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All of the above all the time. Plus backache, tired all the time, joint pain, constipation and a lot of weight loss. At first I thought it was just acid on the stomach so I was popping Rolaids. Well Rolaids is the worse thing you can do because of the aspirin in it. That caused me to have a bleeding ulcer. I figured the ulcer was my problem the whole time but things didn't get better over the next few monthes and I lost a ton of weight that I couldn't afford to lose. From 155lbs down to 118. Ended up in the hospital for blood, gangrene in my stomach and dehydration. It was a total nightmare. Just the gangrene alone put me on death's door step. 7 days with an NG tube and a lot of anti-biotics along with Predinisone saved my butt. Dr told my wife if she had waited till morning to bring me in that they probably would not have gotten things to open up and I would have probably died. Scary thought to be that close to death at the age of 28 and with a wife and 3 young sons. Crohns is not something to mess with and to try and self diagnose. Since 1986 I have had tons of endo's and colonoscopies along with all the rest of the usual tests.
Now I'm on Remicade and doing great.
I'm the Captain of my own pirate ship. You'll find me on the POOP deck!

Greg Yancer
Diagnosed w/ CD Febuary 1986
No surgeries
Current meds:REMICADE (CATS SCARE ME), Pentasa, Nexium, Probonics.

Last edited by Pirate; 08-15-2010 at 05:53 AM.
08-15-2010, 05:55 AM   #4
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Roo symptoms -

Initially upper epigastric pain associated with vomiting and nearly always a headache, tendency toward constipation and sore eyes and knees. These symptoms were occasional at first but over the twelve month period reached a point of becoming weekly.

After being at the point of weekly episodes for a couple of months the pain became more intense and generalised, vomiting increased and fever developed. Was hospitalised with what they thought was Pancreatitis was then discharged after all tests normal. Admitted 5 days later with same symptoms but was now septic and had an infarcted and perforated bowel, was diagnosed on the operating table.

Mum of 2 kids with Crohn's.
08-15-2010, 05:59 AM   #5
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For EJ, early on he would have occasional stomach issues that we just thought were normal childhood related things. He would occasionally get car sick, he would have to run to the restroom at restaurants sometimes, especially Mexican. Then about 6-8 weeks prior to his dx, he started with constant bloody d several times /day and feeling awful most of the time.

He's been on 6mp and Asacol since early this year and has been doing very well.
Mark, father of EJ

EJ dx w/ Crohn's 12/09
PSC 3/10

No more 6mp
Currently in the Humira Club
08-15-2010, 06:23 AM   #6
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hi bennie, i had no symptoms, just had some unusual cramping, so i went to the er, had to have emergency surgury to clear a obstruction. my crohns is considered severe because of this. still trying to figure it out, but everyone is diffrent. be well and listen to your body
emergency stricturplasty surgury april 1, 2010- april fools on me, lol, dianosed mid april chrones, although i had no symptoms- currently on pentassa 8 blue ones a day, vit d, liquid fish oil, and a bunch of other great drugs for my i various problems.
08-15-2010, 07:53 AM   #7
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For me I had D for several weeks and noticed everytime after I ate I had to run to the bathroom. I had horrible stomach and lower back pains. I couldn't sleep at night bc of the frequent bathroom trips. This went on for several weeks and my doc gave me antibiotics to rule out a bacterial infection. Then after a month of constant symptoms he did a colonoscopy and biopsied 30 ulcers and then dx crohns. Hope this helps!
08-15-2010, 08:52 AM   #8
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For me it was bad pain then D every time I ate anything
then feeling tired and run down

then blood tests showed low iron and other problems

the bleeding and mucus started after being given imodium for IBS

by the time I was diagnosed though, I'd also had mouth ulcers, sudden weight loss, bad knees and vomiting.
Diagnosed may 2005!/...p?id=661026431
08-15-2010, 09:45 AM   #9
Join Date: Aug 2010
I feel for you guys and gals i really do, my symptoms seem like nothing compaired to what some of you have been through, i have UC and even though at the start it was horrendous, the only really symptom ive had when its a flare up is feeling like i need the toilet all the time, ive not had any pains, or anything and toutch wood i never do.

Since i got diagnosed a few years ago, 4 more of my close friends have been diagnosed, one of which has crohns colitis.

It feels like its becoming a bit of an epidemic where i stay in glasgow, theres lots of people i know personaly with IBD.
08-15-2010, 09:54 AM   #10
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I had place in my lower colon that I could feel my movements. I had always been the type of person that when i have to go, I have to go. But, then I could actually feel my movements move past that spot - it is on my left side and it still hurts there 30 years later. I would have unexplained diarrhea for days with no other symptoms. And, I could never gain weight, no matter how much I ate. "Luckily" Prednisone has changed that for me! Ha ha.

Over the years I would go back and forth from constipated to D without warning. Then the bleeding and mucous started and they diagnosed me with IBS and put me on fiber and laxatives. It only took about 2 weeks of that and I landed in the hospital!
Diagnosed: 1992 with Crohn's
Current meds: Asacol HD, Humira plus many more!
Also have hypothyroid, diabetes type II, Fibromyalgia, Insomnia, AS diagnosed 12/11 (on my birthday).
08-15-2010, 10:10 AM   #11
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Mine started with some bleeding but then it went away. A few weeks later, my stomach felt weird (can't even really describe it) but it didn't hurt. I was really gassy. Then I caught a virus and where everyone else got better within a couple days, I didn't. I had lots and lots of d. I couldn't make it to the toilet a few times. And then, I started vomiting too. I was severely dehydrated and weak.
I hope this helps in some way!
Diagnosed December 30, 2009
Current Meds: Humira, iron, vitamin d, vitamin c, b12, multivitamin
Also have anemia and anxiety disorder
08-15-2010, 11:25 AM   #12
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Not even sure anymore. Could have started 10 years ago and I never even realized it? More frequent and looser BM's and I probably just chalked it up at the time to too much coffee or beer or something I ate. But not a huge deal, came and went sporadically and I never thought much about it.

Then I would start having these sporadic bouts in the middle of the night -- more frequent getting up w/ diarrhea. But still not chronic. Not ALL of the time, so I never did anything about getting it checked out.

But then, at age 40, it was getting to be ALL the time, and I started to get concerned, and it was more than just a minor nuisance.

So I went to my doc, and he didn't know, so he ordered tests for parasites, etc. and finally a colonoscopy, where I met my GI who told me that I have Crohn's.

It's pretty much been downhill from there.
08-15-2010, 12:59 PM   #13
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I had frequent D (up to 10 times/day) for a few years, which I was told was normal in some people. Beginning in 2008 it got worse and I experienced what seemed like severe indigestion and bloating and fatigue (although I chalked up fatigue to being part of early career life and 90 hour work weeks). Still figured I simply had a tricky tummy. Then on September 30 '09 I had some on and off stomach pain while at a conference in Banff, which became constant and severe the next day (while at a different conference in Calgary!) and which continued until I was treated for Crohn's starting in May 2010. The pain would wake me up at night and I couldn't put pressure on my stomach (sometimes couldn't even reach down into the washing machine, for example). Move ahead a few weeks and on October 22 '09 I started throwing up, and didn't stop for about 3 months -- average was 6 times/day but it went as high as 25+. Blood in stool started in November '09. I started having daily headaches, severe muscle aches (the girl who'd never had a back ache suddenly couldn't stand up straight most days), and an assortment of other symptoms as well.
Dx: Moderate Crohn's in 3 locations
Doctor's orders: 200 mg Imuran
Have used: 4500 mg Pentasa, 4500 mg Salofalk, Flagyl, Cipro, 50 mg Prednisone, 9 mg Entocort.
Turned my Crohn's life around: ginger for nausea.
Claim to fame: "loopy and floppy" colon
08-15-2010, 01:42 PM   #14
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It is hard for me to really pinpoint. I had off and on stomach problems since my teens (what I thought was food poisoning, but no one else got it and we all ate the same thing, I just thought I had a sensitive stomach). I always had bad gas and urgency. What led me to getting diagnosed was a case of hemmoroids which I had removed. The pathologist found evidence of Crohn's in the hemmorhoids and that led to more tests and being diagnosed. What lead to the hemmorhoids was going on a "health kick" and eating salad everyday which led to frequent diarrhea which led to the hemmorhoids. For a while I could control things with diet (i.e. no more salad obviously) but this past year and a half I have been in a flare I haven't been able to find my way out of.

Diagnosed: August 2006
Current Meds: Imuran (125 mg), Budesonide (9 mg)
08-16-2010, 10:44 AM   #15
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That was about 20 years ago now so I'm probably forgetting something but this is what I remember. I was very sick with what we all thought was the flu. I had diarrhea, no appetite, muscle and joint pain, tummy cramps, and was really weak and losing weight fast. This would have continued for a while but one day there was a toilet full of blood after I went and since I was only 9 years old, my parents took me to the ER right away. It took about 2 months to get a diagnosis because I was the first case in the area with Crohns.
Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 75mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel (endometriosis), Tylenol 3 (Osteoarthritis), Zantac 150mg 2/day (acid reflux), Klonopin 1mg (Panic Disorder), Imitrex 25mg (migraines), Zofran 8mg (nausea)
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 19 years and counting.
08-16-2010, 04:08 PM   #16
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Was a long time ago for me too. I had PG on my legs, severe weight loss and D, a fistula, and abdominal pain. By the time they figured out what was wrong I was 124 lbs (usually run around 170), and couldn't walk due to all of the open sores on my ankle/knee and my feet were swollen up.

My parents carried me into the hospital. I spent a week there and I actually turned around fairly quickly with all of the steroids they pumped into me.
Diagnosed in 1996
Currently on: Filgotinib clinical trial, Prednisone, Imuran
Colostomy surgery 4/24/12
Prone to skin infection, abcess, fistula, pyoderma, erathema

Past Failed Treatments:
6 MP
08-16-2010, 08:54 PM   #17
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Join Date: Jan 2010
welcome to the forum!
If you think you might have crohn's please take care of it asap. the biggest mistake i did is tolerate the pain and ignore the signs for some time. I had bloody D, cramps, abdominal pain and was not able to sleep. by the time i made it to the hospital, they kept me there for 6 weeks, i lost 45 lbs and almost my life.
Being proactive and choosing a good gi are key.
good luck
-Best wishes - Dan

1. Diagnosed with Crohn's UC 1995
2. Flagyl/Cipro Imuran in 80%remission 1997 2005
3. Used 5mp, asacol, 6mp, remicade, imuran, Cimzia, entocourt, Flagyl/Cipro and enemas/suppositories until 2010 with periodic relief.
4. July 9th 2010 total ProctoCollectomy surgery! Free at Last!
08-17-2010, 01:04 AM   #18
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Nothing for me either. I was chubby all my life too. When I was diagnosed I was actually obese (more than 100 kg). I was eating greasy-spicy-uhealthy food without problems. I had 3-4 portions of fruit a day wihtout problems. The night before my emergency surgery I had mushroom risoto with souvlaki, chocolate pudding and water melon.

I think before the surgery I had... maybe 10-20 Ds in my whole life (I am 36). Thats why noone even thought of looking for something else other than appendix when I went to the er. I think my GI still does not believe me whe I insist I had NO symptoms whatsoever, I know my mother and husband do not believe me. But it is true.

Oh yes I had a symptome that fits... for a about a year and a half I was tired all the time. But, I have two small kids, I work full time (9-5) I live in a Three level house, I am a PTA member and a student at the open university so yes... I was expected to be tired.
08-17-2010, 07:19 AM   #19
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Mine started out with gallstones and having my gallbladder removed. After a few weeks I was not any better. I was having severe stomach pain and ended up in hospital. I had IBS type symptoms for about 10 yrs prior. Mostly D.

diagnosis- Oct 2006

remicade every 6 wks
08-21-2010, 05:37 PM   #20
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For me, looking back, I may have had mild symptoms for years (bloating, wind, occasional loose stools) but attributed it to lactose intolerance.

The symptom that led to my diagnosis was a very severe stomach ache, that was not relieved by going to the toilet, heat or painkillers. Each stomach ache would begin around 3pm and build in intensity. I would be sick in the evening from the pain, often several times, before finally falling into an exhausted sleep in the early hours of the morning. Upon waking I would feel fine (if a little sore from the puking). This went on almost daily for just over a week, until one night the pain was so bad I couldn't stand, sit or lie down. I was writhing and moaning and crying out loud in pain and my boyfriend just said 'that's enough, I'm taking you to the hospital'.

I am lucky, in that it only took 2 weeks and 3 tentative diagnosises before they hit on the right one and put me on steroids.
Crohn's in the terminal ileum, dxed Jun '10

125mg azathioprine
4g Pentasa
08-22-2010, 08:23 PM   #21
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I had crazy eye issues for nearly a year before I had any stomach issues. It was a fun game of connect the dots.
Diagnosed: Crohn's Oct '09
Extraintestinal: scleritis May '08, GERD Aug '09, ankylosing spondylitis Feb '10
Current Meds: Humira, Asacol, Dexilant, domperidone, Tramadol and a whole lot of vitamins
No more sulfasalazine, Methotrexate, Xibrom, Pred Forte and Iron
08-24-2010, 01:08 PM   #22
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Hey there i just want to caution you and tell you (although you probably know) that all the symptoms are very personal and change wildly from person to person and please go get it checked now anyways because if you leave it it can become worse. However with that said when my symptoms started it was daily and nearly nonstop. I had noticable blood about 25% of the time (blood can be hidden in the d) and was going upwards of 10-12 times a day throughout the night too. Severe stomach pain and 15lbs of weight loss. That was basically it but again like i said it ia best to be checked early on and good luck.

Diagnosed October 2007
Currently on Remicade 400mg (October 2010)

Tried Budesonide (april 2010-july 2010) & Asacol (october 2007- dec 2009) & Imuran (Dec 2009-Dec 2011)

Last edited by crazycanuck; 08-24-2010 at 01:11 PM.

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