Patient Comments: Crohn's Disease - Symptoms

Question:

The symptoms of Crohn's disease can vary greatly from patient to patient. What were your symptoms at the onset of your disease? Submit Your Comment

Comment from: Angzcool, 35-44 Female (Patient) Published: November 24

I was diagnosed with Crohn's disease at 35. I have cramps in my upper abdomen that hurt through to my back followed by vomiting which gives me relief from the pain for a few minutes. This continues over and over eventually occurring almost constantly. CT and barium swallow showed Crohn's in my jejunum and fluid in my lower abdomen. The fluid confuses the gastroenterologist. I think it's from all the heaving. I was on Pentasa for a short time and prednisone for a long time. I lose weight quickly during a flare but gain it all back when in remission. I have pain when I eat high fiber foods, beans, corn, popcorn, etc. I also have 2 to 3 bowel movements a day most days and have spells of weakness and tiredness on those days. I'm also nauseous a lot.

Comment from: jdalan, 35-44 Male (Patient) Published: April 14

I was diagnosed with Crohn's disease at the age of nine. I had no symptoms at all, until one day I experienced severe stabbing abdominal pain; and I was rushed into surgery to remove a mass around my large intestine. Seven years later the same thing happened with no acute symptoms in between. Six years after that I began to feel ill, lose weight and I became anemic for several months before surgery number three. Since this I have had six more surgeries and I have lived with symptoms daily. I have abdominal pain, cramps alternating diarrhea and constipation. I have to takes medications constantly.

Comment from: S. N, 35-44 Female (Patient) Published: February 25

The problems started when I was 17 years old. I had very loose stools immediately after I ate. I took treatments but nothing worked properly. In the long run I started falling sick every other day either with fever or with diarrhea and vomiting. Later on I developed joint pains too. All the tests showed nothing wrong in me. People accused me for pretending to be sick. There was a pain on the right side of my stomach which makes it hard for me to bend or even lie on that side. At last when I was 28 years old I got the correct diagnosis. I have Crohn's disease in my small intestine and wall thickening in three places. I am happy that people stopped accusing me for pretending to be sick. Other than that there is not much change in my condition. I am not able to eat anything which is rich in fiber. On and off I get swellings all over my body and it goes off too.

Comment from: lizzylou224, 25-34 Female (Patient) Published: February 02

I was diagnosed with Crohn's disease at 4 years old. I first started having symptoms at two but mostly experienced painful, swollen joints and sore, red spots on my skin, with occasional bloody diarrhea. I was seen by a rheumatologist for the arthritis, who told my parents that the problem was not in my joints but in my gut. I then saw a pediatric gastroenterologist, who diagnosed me with Crohn's and started me on sulfasalazine. I've had only one flare since (about 22 years later) and it also began with severe joint pain.

Comment from: TiffLee, 19-24 Female (Patient) Published: January 06

I was 12 years old when I originally got sick. After much abdominal pain, weight loss, passing out, vomiting, and innumerable amounts of bathroom trips I was admitted to the hospital 4 months later and was diagnosed with Crohn's. It was a long diagnosing process because I didn't have blood in my stool which led my doctors to believe it wasn't Crohn's. After an upper and lower colonoscopy/endoscopy I was diagnosed with Crohn's at the age of 13. Since then I have been on several medications including Pentasa, Lialda, Imuran, Humira, and currently Remicade. My immune system developed antibodies to each medication causing me not respond to the medications after a time. I was on Humira for two years and the previous 3 prior to Humira was different periods of time on each medication. I am 21 years old now and have been on Remicade for two years and am doing well still. However, I am concerned because recently I have been getting blood in my stool that normally signals a flare-up for me, but I just got back great blood work tests.

Comment from: patrick31ca, 45-54 Male (Patient) Published: July 29

I have Crohn's disease for 30 years and had 2 resections, and many visits for steroids at the hospital.

Comment from: 55-64 Male (Patient) Published: October 10

Initially I lost weight, I had 5 to eight bowel movements of pure dark liquid, burning cramps, and no appetite. Initially I was put in hospital mistakenly for bleeding ulcer in 1987. I was diagnosed with Crohn's in 1988.

Comment from: Engl Bull Lover, 55-64 Female (Patient) Published: October 09

I started having intermittent diarrhea for 6 months. Colonoscopy showed no signs of inflammation. Diarrhea worsened to 30 plus times per day. Five months after the first colonoscopy, a second showed severe damage in a rare area for Crohn's. Also now I have high liver enzyme test results. All very sudden for the first signs at 60 years old!

Comment from: sgoakey, 45-54 Male (Patient) Published: September 23

I am 46 and was diagnosed with Crohn's at age 19. The symptoms some years earlier were actually arthritis in the hips, well before suffering severe gut pain. At 19 I had part of small and large bowel removed and was told then I was a likely recipient of new hip joints when I turned 40. I still have the old hips but they get very sore if I exercise (e.g., walk or run). From the surgery until around age 40 I virtually had no symptoms. Even today have little gut pain. But I have suffered diarrhea since 40.

Comment from: Lisa P, 25-34 Female (Patient) Published: April 25

I started with constipation for 2 years with severe stabbing pain in lower left hip. Then I was alternating between diarrhea and constipation for 2 years, still with severe pain. I had a year of diarrhea, 20 times a day, until my bowel perforated and I had emergency surgery. I was diagnosed with Crohn's disease after surgery. I also have sacroiliitis.

Comment from: Mon, 7-12 Male (Caregiver) Published: April 11

My son, 11 years old, is diagnosed with Crohn's disease. He was anemic for 2 years. He did not grow at the same pace as his friends. He made excuses as to why he didn"t want to eat, and would eat only small amounts of food. Then the stomach pain started right side, with loose stools and also very thin stools. He looked pale and was tired and looked so thin and would not gain weight. Hope this helps others looking for answers. I wish we could have helped him sooner. Good luck with everyone"s journey!

Comment from: gethelp2, 45-54 Female (Patient) Published: February 26

I have had stomach problems since I was about 20 - severe cramps, vomiting, and blood pressure rising very high. However I did not get diagnosed with Crohn"s until I was fifty. If they had diagnosed it sooner maybe I wouldn"t be in pain every day. The medicine I am on now has decreased the severity of the pain but I still can"t function very well. Don"t settle for just getting pain medication at hospital if you have these symptoms, don"t let them wait thirty years for you to be diagnosed and treated with other medications. There are times when I have frequent bowel movements and then there are times when I struggle to have bowel movements. You can have Crohn"s without weight loss. I wish I knew then what I know now. Educate yourself or other family members who suffer with stomach problems.

Comment from: Miss.optimistic, 25-34 Female (Patient) Published: January 06

It was in my junior year of undergraduate studies, about age 20 to 21, that I had severe abdominal pains, a constant low grade fever and persistent diarrhea. I would have to get up numerous times during class to use the bathroom, then feel lethargic all day. I did have some symptoms of Crohn's Disease in high school after eating certain foods, but I did not have the severe pain I felt in college. It took my gastroenterologist almost a year to figure out what was wrong with me. I tried Pentasa first, which I regret immensely. It gave me arthritis as a side effect during the trial and I still have what I call "bubble gut" from the medications that still greatly affects my life today. I then tried a mild steroid that did not help or hinder my condition. I made diet/lifestyle change along with vitamins and probiotics, and I have longer periods in remission and shorter flare ups. Another thing that has helped was the Alcat blood test to figure out exactly every type of food I was allergic to. My intestines are intact, I am not on medication and I rarely have to visit my gastroenterologist.

Published: May 27

I was 18 years old and had extreme stomach pain. I went to my doctor and had a fever that I was unaware of. They sent me to the hospital to have my appendix removed. After the surgery the surgeon told my parents that he just removed a perfectly healthy appendix and that I had Crohn's disease. At that time they removed 18 inches of my intestine. I lost a tremendous amount of weight and have be thin since. My main problem since then, I am now 39 years old is the inability to move my bowels, just the opposite of what I have heard other patients have. I have been hospitalized since, thank god no more surgeries for Crohn's. I recently had a hernia removed, which I was told could have been from straining all these years. I was also in the hospital for five days for what was supposed to be an outpatient procedure because the hernia was so large and there were many lymph nodes that needed to be removed.

Comment from: Brit_crohns, 45-54 Male (Patient) Published: June 24

I had Crohn's since I was 18. Like most, I had lost weight, felt really ill for months before, and increasingly lethargic. I went into a casualty and it took a few days in isolation till they figured out what it was. This was 30 years ago. Since then I have used Asacol and prednisolone, as needed. The former never really worked (so I stopped) and the latter, which nearly always gave massive relief eventually caused osteoporosis. Be aware and ask for a periodic check on this. I have had times where I have no symptoms for many months then other times when I have felt dreadful for months on end. Alcohol always makes it worse, so rarely have any. I have found that gentle exercise, especially something like golf, is really good. (Walking and I personally think the twisting and stretching of my stomach, etc.) Eating within a couple hours of bed is always bad news and often leads to stomach pain overnight. I sometimes go for a day or so not eating, which for me does give my intestines a little break, although I agree that little and often is best. Smoking can aggravate. Fortunately other than alcohol I don't have to avoid many foods. I always find that cream, heavy desserts/chocolate puddings, etc., will always aggravate things if I eat more than a little or too late in the day. Stress definitely aggravates the condition also. Also a small point, but I think wearing too tight trousers (round the waist) aggravates the situation. There are good days and bad days, but I believe for many (not all unfortunately), this condition can be managed by a sensible lifestyle, careful eating and attention to what aggravates it for the individual.

Comment from: Just me, 13-18 Male (Caregiver) Published: June 02

My son was diagnosed with Crohn's disease very early, 10-11 years of age. He had symptoms for at least 6 months - 1 year before, and had lost a considerable amount of weight. He was very pale, with big black bags under eyes. He was diagnosed after upper and lower gastrointestinal endoscopy. He was put on Asacol, which worked great for many years. The doctor declared him in remission and took him off, within months he was right back to being real sick. The doctor put him on Remicade, which worked wonders, for about 3 to 4 months, then stopped helping him. He has been on Humira for about 6 months, and he is so much better! Just hope it keeps working for him!

QUESTION

What is Crohn's disease? See Answer
Comment from: linda, 45-54 Female (Patient) Published: April 08

My symptoms of Crohn's disease were stomach pain, fissures, nausea, weakness, cramping and abdominal pain.

Comment from: BeckyMc, 55-64 Female (Patient) Published: November 26

When I first got Crohn's I had a hard time getting a diagnosis for my symptoms. I had terrible diarrhea but I was also vomiting a lot. When it was finally sorted out it was determined that I had Crohn's and gall bladder disease. Surgery removed gall bladder and almost two feet of small intestines. Since then I have had another section removed of about 21".

Comment from: Crohns coritis, 45-54 Male (Patient) Published: October 28

This illness started with blood in my stools and cramps in my stomach. I had a colonoscopy. I could see it was inflamed and had ulcers. I was given medication, now that I have finished the medication, it has returned.

Comment from: Crohn'[email protected], 35-44 Female (Patient) Published: May 20

I was diagnosed with Crohn's disease at 23 years old. I would get such bad stomach pains, I would double over. Everything I would eat I'd have to go to the bathroom or hope I was near a bathroom. I am now 36 and I haven't had a solid bowel movement since I was around 21. I've tried several medications and it just seems like nothing works. My doctor has always had me on pain medications. He was hoping they would kind of constipate me, but I have never in my life been constipated. Bentyl, Donnatol and a couple other meds, plus the pain killers, are the only things that ever seem to help me. I eat like a pig, but I am 5'9”, and when I first got sick I weighed 87 pounds. Not because I wanted to be a stick. I've managed to put on some weight, but when my nerves bother me, my Crohn's flares up really bad. My doctor says I'll more than likely be on some kind of pain medication for the rest of my life. I eat like I should with Crohn's, but yet I have severe flare ups. I just wish I could be normal.

Published: July 23

I was recently diagnosed with Crohn's Disease at the age 17. One morning at school I felt as if I was cramping but the pain increased tremendously so then I thought it was a gas bubble. Within seconds I was bent over, pants un-buttoned, crying in severe pain. I was taken to the hospital and at first they thought I needed my appendix taken out but that was negative so they did many tests on me before I was sent home and saw that my small intestines was inflamed. I was sent to a GI doctor and found that I had the symptoms of Crohn's and after drinking Barium (the worst taste EVER!) and more tests I was then diagnosed with an early part of Crohn's. I am now taking Pentasa and Entocort EC and so far every once in awhile I get stomach pains and often soft stool but I'm still living life to the fullest.

Comment from: MandiHunter16, 25-34 Female (Patient) Published: April 22

I have had severe Crohn's disease since February 2013. There was abscess involved. I have had surgery twice and still due for another. I'm not on any medications due to pregnancy. Seton drains were placed, for 8 months now; not a happy camper.

Comment from: 55-64 Female (Patient) Published: July 18

I suddenly had stomach cramps and did not feel good followed shortly thereafter by bloody diarrhea. Within 4 hrs I had lost a great amounts of blood. Blood count was down to 6.

Comment from: rissa, 35-44 Female (Caregiver) Published: May 06

My brother was just diagnosed (supposedly) with Crohn's, but he has a serious drug problem and has been on heroin for years. I was wondering if the heroin could have been affecting his stomach in a way that he was misdiagnosed. I want to give him the benefit of the doubt, but this isn't the first time he's cried wolf.

Comment from: Teresa, 25-34 Female (Patient) Published: March 05

I was 16 when diagnosed with Crohn's I am now 34. Started out with abdominal pain in the right side nausea and vomiting. They though it was my appendix when they got in to take it out they found I had Crohn's. I have been on several medications. Prednisone, Solu-Medrol, Lomotil, Imuran, Entocort, Remicade and Humira. I currently don't take any medicine. I found that Humira worked best for me but every 2 weeks when I took a dose I always ended up with a sore throat. Which put me on antibiotics and couldn't take the Humira. I can't get any Medicaid or anything and cannot afford to go to the doctor for the past I guess 10 years. But I learned to semi control it on my own. I drink plenty of water but not too much about 4 glasses a day and lots of tea. I eat anything I want to just stay away from spicy foods, nuts and corn. I believe with my Crohn's it varies from day to day. I don't have much of the pain anymore. I had reconstructive bowel surgery in 2000 and an obstruction in 2004. Been doing pretty good since then.

SLIDESHOW

Crohn's Disease Causes, Symptoms, Diet See Slideshow
Published: July 24

Pain started a week ago, and comes in waves, like labor pain, on righthand side, and deep where ovary used to be. I have nausea and weak legs. I am too scared now to eat at all. The pain goes round now to behind right hip. Loose bowels and the feeling that my insides are being twisted.

Published: July 23

My son was diagnosed 3 months ago, but he was sick for 6 months before. He complained with a stomach ache and I would take him to the doctor and he would say it's a virus and give him antibiotics. Soon he had missed so much school that I had to get something done. (He really does not like school so I thought he was faking at first.)He had diarrhea and abdominal pain but no fever, but the g.i. doctor did a CT scan for appendicitis and ended up with a diagnosis of Crohn's.

Published: July 21

I was in my early 40s (now mid 60s) when I began to have a lot of diarrhea, which was getting me up in the middle of the night. I simply felt unwell with a low grade fever. I rarely had stomach aches, but I had so much pain in my groin that I couldn't walk. I was diagnosed by colonoscopy. I have never had surgery and tried almost every medication known to doctors. My most significant complaint, besides the frequent trips to the bathroom with loose stools, is joint pain, especially around my ribs, sternum and collar bone. Remicade was a miracle drug for those pains and the groin pain but it stopped working after a while: I would be barely able to walk into the hospital to get the infusion and would feel great leaving two hours later. I am thinking of going back onto Entocort because I have not been feeling well recently. I know my Crohn's path is unusual, but I hope this helps someone.

Published: July 16

At the onset of the disease I had bloody stools, pain in my abdomen, fatigue and I craved ice. I was 11 years old when I was taken to the hospital and from that point on I was hospitalized each year for approx 20 days or more with relapse until I was 21. I am now 40 years old and since my surgery in 1989 I have pretty much been symptom free.

Published: July 14

My wife and I went into the hospital for what we thought was her appendix. After her CT scan it showed she had a perforated small intestine. She was transferred to a different hospital to have a bowel resection done. They removed a total of 27 inches of her small intestine and also her appendix. She was then diagnosed with Crohn's. Before we went to hospital she had complained of stomach pains and had diarrhea. The doctor said by the severity of the Crohn's she had been sick for probably for over a year. Word of advice, if you have constant symptoms, please see your doctor immediately. For now my wife and I start our new journey with a new disease.

Published: July 14

I am having soft/thin stools for many years, precisely for 10 to 15 years. Must be due to obstruction to feces in rectum or obstruction in small intestines, not much abdominal pain, but 4 to 5 stools everyday. Never hard, thick, or normal stools. But mysterious thing about me is when I have no seminal emissions for few days, my stools get improved. Though there is no scientific connection between these 2, my practical experience suggests something else. Also when I took herbal medicines to harden my soft stools, my semen also gets thicker.

Published: July 07

My six-teen year old daughter was diagnosed with Crohn's Disease last week and fear filled my body immediately. We took her to the doctor due to her finding blood from her anus after using the restroom. She has not yet experienced any pain due to the disease; however, the doctor told us that it is in its early stage at this time. She does experience back pain on her spine and we are in the process of having that checked out as well. I read that Crohn's disease affects the spine also.

Published: July 07

I have suffered with Crohn's disease since pre-teen ages. I finally discovered a name for my condition at 60. I have discovered a way to put my condition on hold long enough to fly cross country, and go to the grocery store with out worrying about a mishap in public. This is what has worked for me, and if it helps anyone not be 100% house bound, then it's worth my sharing this with you. I take a Vicodin 500 MG and within an hour the diarrhea will subside, and prevent a mishaps for at least 10 to 12 hours. It works so well for me that I use this process sparingly as I don't want to dilute the effectiveness by using it daily. Also, I am told this pain medication can become addictive. I don't want that either so, I am cautious.

Published: June 27

I was diagnosed with Crohns later than most, age 38. I was treated when younger for ulcers but nothing serious. I had symptoms for several years: hair loss, brittle nails, severe stomach pains, nausea, fatigue, dizziness due to lack of proper diet (ate little due to pain), severe weight loss. Never a large person, I weighed 82lbs by the time I chose surgery. Spent several years on steroids and various medications. The medication provided temporary relief of some symptoms but the pain still made day-to-day activities unbearable. I am now five years without symptoms. I experience some discomfort when eating certain foods now: tomatoes, peanuts, cucumbers, etc. You learn to live without or in very minimal portions. I had 18 inches removed and they expected me back within a year due to the amount of scare damage related to the disease. I will not wait so long next time; prefer to live without a next time. Fingers crossed and living my life to its fullest!

Published: June 24

I've had Crohn's disease since I was 15 yrs. old. I am now 19, at first I had diarrhea, severe stomach pain, weakness. I went to the hospital and they told me it was a stomach virus, I went on antibiotics and nothing seemed to be helping that was how it went for 6 months, in that time I lost 102 lbs. I couldn't eat, I was throwing up bile and stomach acids, severe diarrhea and the stomach pain was intolerable, finally I went to a GI doctor he did a colonoscopy and found it was Crohn's disease since then I've been on about every medicine there is 3 caused pancreatitis. I am about to start Remicade, I am very hopeful. My symptoms have cleared up a lot since I was first sick, hopefully Remicade will put me into remission so I can live happier.

Published: June 24

Fever, severe diarrhea, nausea and vomiting, blisters in throat and mouth, pain in abdomen, inability to swallow without pain, extreme weakness.

Published: June 19

I began having serious issues with Crohn's Disease when I was 16. I was under a lot of stress and had diarrhea or vomiting or both nearly every day. A doctor diagnosed me with IBD and once the stress went away, I was fine for a long time. 10 years later, I was officially diagnosed with Crohn's and Rheumatoid Arthritis. Many of the RA meds helped the Crohn's. I only have problems now when I have too much fresh fruit, or when I am stressed past my normal daily stresses. The end result is always either bulky soft stool or thin strings of stool. I worry more about the thin stool because I know it indicates swelling in the small intestine and can result in obstructions. But, suddenly needing a bathroom without warning isn't a lot of fun either!

Published: June 19

When turned 16, I started to get severe abdominal cramps and chronic diarrhea. I lost 15lbs in less than 2 weeks. I also became severely malnourished and anemic. Now, 25 yrs later, I am much better at maintaining my weight and have been on a special diet (no milk/dairy products, low-residue diet.

Published: June 16

Feeling sick a couple of hours after eating, it doesn't matter what I eat.

Published: June 09

I'm a 33 Year old woman and have had Crohn's disease since I was 26. I have been on azathioprine immunosuppressant for 18 months now and have noticed that I am losing my hair which is quite worrying , also my scalp is tender and my hair is very dry.

Published: June 02

My symptoms started with occasional abdominal pain and eventually severe pain when I had a bowel movement which at the time I described to my family as though it felt as though I was passing razor blades out when trying to have a BM. Eventually this progressed to the point that I lost close to 100 lbs. and was truly miserable and felt as though I was dying. I tried Asacol and metacaptourine. What saved my life was getting on Remicade IV treatment every 8 weeks or so. I've been rec Remicade for approx 5 years now. I do have to have a surgical dilation of my rectum every 4 -6 months to open up my tract to allow me to go.

Published: June 02

I was diagnosed with Crohn's Disease 5 years ago when I was 16 years old. My initial symptoms was chronic diarrhea after almost every meal, I lost about 10-15 pounds in 2 months. I had severe abdominal pain and had occasional sores in my mouth.

Published: June 02

I was 40yrs old when I started having abdominal pain that was vague (not the kind you touch and feel pain), but notable. Definitely not the "bad gas" type but like stabbing on my left side. It was 2mos before I decided to go to dr. (I'm a mother!) He thought I was having pain from a smoldering appendix and sent me for CT scan. Turns out they found I had Crohn's. I did not have diarrhea or any complex issues at that time. I could live with the pain w/o meds. It's been about 16mos since the diagnosis and I haven't been back to dr. However, the symptoms are getting worse - I have lots of gas and get terrible urgencies to go to bathroom 2-3x day w/runny stool usually 3/7days of the week.

Published: May 23

I had severe pain and some bloating on the right side of my belly button. It was most noticeable in the morning when i would first wake up and than periodically throughout the day. My stools were loose and i even had some blood in my stool but not on a regular basis.

Comment from: Buruburu, 13-18 Female (Patient) Published: March 29

Normally, when I have a bowel movement there is no pain but the toilet water turns red. I think it's blood – fresh blood. Also, I have nausea and loss of appetite.

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