What were your symptoms at diagnosis?
- Thread starter Ldncrad
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I had mild to moderate pain in the lower right abdomen for years prior to diagnosis. The thing that really triggered the search that turned up the Crohn's was an attack of severe anemia. I never had any diarrhea to speak of.
I went along with mild ileal Crohn's for 6 years and then had an attack of pericarditis, which turned out to be an extra-intestinal manifestation of Crohn's. The symptom of that was primarily shortness of breath. I had surgery to remove the pericardium and was put on Stelara to battle the Crohn's, which appears to be working. So right now I have no symptoms.
Pain and anemia are common in Crohn's, but taken together my collection of symptoms, while not unheard of, were not very typical most Crohn's patients.
I went along with mild ileal Crohn's for 6 years and then had an attack of pericarditis, which turned out to be an extra-intestinal manifestation of Crohn's. The symptom of that was primarily shortness of breath. I had surgery to remove the pericardium and was put on Stelara to battle the Crohn's, which appears to be working. So right now I have no symptoms.
Pain and anemia are common in Crohn's, but taken together my collection of symptoms, while not unheard of, were not very typical most Crohn's patients.
For me, I had a sharp pain in my lower right abdomen that would happen occasionally. I would have loose stools close to diarrhea with blood in it. I never ran to the bathroom 20 times a day, but it was more frequent than normal like 2-3 times a day. I did not feel like eating much as I was not hungry at all. My blood work showed that I was also anemic.
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Abdominal pain, inflammation, diminished appetite. Another telltale is your abdomen hurting as you drive your car over even the slightest bumps.
Wearing pants or a belt that were even the slightest bit tight over the abdomen also hurt.
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Severe anemia was the first sign, when the inflammation was confined to my duodenum. When it spread farther down into the jejunum and Ileum it was pain and inability to eat or drink resulting in rapid weight loss and hospitalization. The pain was really severe with my last hospitalization so for me that’s the first thing I pay attention to. Never any diarrhea; I am usually constipated.
I had been having a large amount of bowel movements, bleeding, terrible stomach cramps and generally felt unwell. I kept going back to the Doctor but getting nowhere until one day I saw a student doctor who did several checks on me, saw how pale and dehydrated I was and felt I should be sent off to hospital. I can never remember his name but I will always be grateful to him to taking the extra time to listen to me properly.
symptoms can really differ from patients depending on disease location. In my case, rectum and sigmoid colon were sick at diagnosis. I had easy classic symptoms to recognize for any doctor: mucus and blood increasing in quantity and frequency of bowel movements over just a few weeks/months. I got diagnosed very rapidly. The first general doctor I saw knew right away it was most likely IBD.
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I had extremely bad lower right abdominal pain to the point where I'd be sick. I lost a lot of weight because I had a very low appetite and my hair started to fall out a lot. I was always rushing to the toilet every 30mins and would have loose stool sometimes with blood. After doing a blood test all they found was that I was anaemic and I was put on iron tablets. It wasn't until after a year where I was admitted and they did a colonoscopy which confirmed I had Crohn's disease.
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The first thing I noticed was being out of breath during excercise, and the diarrhea started soon thereafter. I didn’t have any pain, but knew something was wrong...no appetite and I was losing weight. I had fever as well before a CT found inflammation.
I was diagnosed in 1982, but had the disease about three years before the doctors figured out was was wrong. I was lucky to get by chance in Urgent Care a young, newly minted gastroenterologist who had just graduated med school. He had just read about Crohn’s. The symptoms that finally landed me in the hospital at that time were severe diarrhea, vomiting, weight loss to the point of malnutrition (I weighed 83 pounds), high fevers, and the inability to keep anything down, not even water. But looking back earlier, other than the gastro symptoms I’d had for a long time, I had really bad hives, swollen feet and fingers for a couple of years with no relief. This continues to be an early warning sign for me in a flare.
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Pain in lower abdomen, lower right side and behind belly button. Literally felt like a sausage was behind my belly button! I couldn’t eat anything without it feeling like shards of glass were going through my body or I would throw it up. I also had a fast heart rate (125 beats a minute at peak), anemia, fatigue, and anxiety. Never any blood in the stool. I had dropped so much weight my GI said if I couldn’t gain it on my own I would be put on a feeding tube. I was under 90lbs. My hair started to fall out and my periods had stopped.
I had felt bad for a while but didn’t go to the doctor. I thought I was just stressed out. I didn’t get freaked out until I couldn’t eat without severe pain or vomiting. I REALLY don’t like going to the doctor so it took a lot to get me to go. They found the issue with a CT scan and MRI, colonoscopy looked like Crohns. I was put on meds immediately.
Definitely have IBD, looks like Crohns but officially diagnosed as indeterminate colitis.
Early signs of a flare for me are diarrhea and pain after eating. I have battled the last couple by immediately going to a liquid diet and contacting my GI for meds. So far Entocort has worked.
I am lucky to be in remission right now, but I know it can’t last forever.
I try to be as healthy as I can and listen to my body. I believe everyone is different and what works for me may not work for you. My latest battle is with eczema. I feel like if my immune system isn’t attacking my gut it just moves to a new area...right now it’s my face and scalp.
I had felt bad for a while but didn’t go to the doctor. I thought I was just stressed out. I didn’t get freaked out until I couldn’t eat without severe pain or vomiting. I REALLY don’t like going to the doctor so it took a lot to get me to go. They found the issue with a CT scan and MRI, colonoscopy looked like Crohns. I was put on meds immediately.
Definitely have IBD, looks like Crohns but officially diagnosed as indeterminate colitis.
Early signs of a flare for me are diarrhea and pain after eating. I have battled the last couple by immediately going to a liquid diet and contacting my GI for meds. So far Entocort has worked.
I am lucky to be in remission right now, but I know it can’t last forever.
I try to be as healthy as I can and listen to my body. I believe everyone is different and what works for me may not work for you. My latest battle is with eczema. I feel like if my immune system isn’t attacking my gut it just moves to a new area...right now it’s my face and scalp.
I was 9 when I was diagnosed (22 now) which was back in December 2005, but I remember it just like yesterday. I started having abdominal pain and then severe diarrhoea. This carried on for a week until blood started to come through with the stool and at that point I was going to the toilet about 10-12 times a day. Because of the diarrhoea I lost weight. I lost 3 stones in a month. I went to the doctors and they didn’t know what was going on and they kept a sending me home. I became really really ill that I was going to toilet around 20 times a day and was sleeping throughout the day. Couldn’t go to school anymore as I had no control ovver myself. And then in November my dad took me to the hospital and they admitted me. I stayed there for 2 weeks undergoing tests and then they referred me to a children’s hospital in Manchester as they thought it was surgical. In Manchester a doctor came and saw me and he referred to me another hospital that he works in and I think at that point he knew it was IBD but couldn’t say anything until he did more tests. I was referred to the hospital and they did a colonoscopy and it was confirmed to be IBD with it most likely to be Crohn’s.
Fast forward to multiple hospital admissions, multiple treatments and colonoscopies later, in October 2014 I had emergency surgery. It was my third admission that year and I was near death. The only way to save my life was to have surgery. And on the 24th October 2014, I had a total colectomy. They then said it was UC and not Crohn’s. I stopped all medication as the removal of the colon should have “cured” me. Little did I know, that 2 years later I would be officially diagnosed with Crohn’s disease and could no longer have the pouch surgery and be back on medication.
I am currently on stelara and currently waiting for my biopsy results and my consultation to see whether I could have surgery to connect my small bowel to my rectum
Fast forward to multiple hospital admissions, multiple treatments and colonoscopies later, in October 2014 I had emergency surgery. It was my third admission that year and I was near death. The only way to save my life was to have surgery. And on the 24th October 2014, I had a total colectomy. They then said it was UC and not Crohn’s. I stopped all medication as the removal of the colon should have “cured” me. Little did I know, that 2 years later I would be officially diagnosed with Crohn’s disease and could no longer have the pouch surgery and be back on medication.
I am currently on stelara and currently waiting for my biopsy results and my consultation to see whether I could have surgery to connect my small bowel to my rectum
