What was your Crohn's onset like?
September 5, 2015 7:00 PM Subscribe
I have been wondering if I have Crohn's disease. I want to get evaluated by a doctor, but I would like to hear about your experiences of onset and diagnosis to see if I'm on the right track with this.
It seems unlikely that one person could get food poisoning this many times, so I've wondered for a while if there's something going on with my GI tract. Crohn's runs in my family and my 23andme test reported that I have many genes increasing the risk of it, so I suspect that it's a possibility. I did go to a GI clinic a few years back and got a diagnosis of small intestinal bacterial overgrowth, but I'm not sure about the reliability of that, since they seemed to give the same diagnosis to everyone who went there, and the treatment didn't really help. I was tested for celiac at the time (negative) but nothing else.
I know I need to go to a doctor to find out, so I'm not looking for you to guess based on my symptoms. But I would like to hear what the onset of Crohn's disease looked like in other people (age when it started, initial symptoms, whether you were diagnosed with anything else before it was identified), so I can see if I'm totally barking up the wrong tree. I was able to find general information on the Internet, but I'm more interested in personal experiences.
It seems unlikely that one person could get food poisoning this many times, so I've wondered for a while if there's something going on with my GI tract. Crohn's runs in my family and my 23andme test reported that I have many genes increasing the risk of it, so I suspect that it's a possibility. I did go to a GI clinic a few years back and got a diagnosis of small intestinal bacterial overgrowth, but I'm not sure about the reliability of that, since they seemed to give the same diagnosis to everyone who went there, and the treatment didn't really help. I was tested for celiac at the time (negative) but nothing else.
I know I need to go to a doctor to find out, so I'm not looking for you to guess based on my symptoms. But I would like to hear what the onset of Crohn's disease looked like in other people (age when it started, initial symptoms, whether you were diagnosed with anything else before it was identified), so I can see if I'm totally barking up the wrong tree. I was able to find general information on the Internet, but I'm more interested in personal experiences.
Crohns and colon cancer run in my family too. I began having GI related issues starting age twelve. I was diagnosed with Irritable Bowel Syndrome. Symptoms included abdominal pain, bloating, and basically never being regular. During my twenties I began having really severe pain, with passing of blood. A colonoscopy and endescopy revealed a stomach ulcer which had greatly irritated the rest of my GI tract. I had to take some medication to heal the stomach ulcer, and was on a strict diet for about a year.
You don't state how old you are, but my unsolicited advice is to get a colonoscopy to get a definite answer about what is going on.
posted by LilithSilver at 9:32 PM on September 5, 2015 [1 favorite]
You don't state how old you are, but my unsolicited advice is to get a colonoscopy to get a definite answer about what is going on.
posted by LilithSilver at 9:32 PM on September 5, 2015 [1 favorite]
I was diagnosed at 28; the event that preceded my diagnosis was a trip to the ER with vomiting and severe abdominal pain. I was told I had a narrowing of the intestine, rather than a full on blockage, but it required a four or five day hospital stay, an NG tube, the works. I was finally diagnosed after a colonoscopy that showed active Crohn's. I had been having diarrhea and abdominal pain since I was around 12, but my primary care doctor had always told me that it was "just normal for me." (Thanks, Doc.)
Crohn's can be kind of elusive, as I understand it; it is difficult to get a definite diagnosis unless the person's disease is active and can be seen by a colonoscopy. The best thing to do is to have one while you are experiencing symptoms.
posted by lemonwheel at 9:43 PM on September 5, 2015 [3 favorites]
Crohn's can be kind of elusive, as I understand it; it is difficult to get a definite diagnosis unless the person's disease is active and can be seen by a colonoscopy. The best thing to do is to have one while you are experiencing symptoms.
posted by lemonwheel at 9:43 PM on September 5, 2015 [3 favorites]
I was diagnosed with Crohn's after a colonoscopy--I basically just had sharp pains and was like "uh, this isn't normal."
I'm surprised you were diagnosed with SIBO--I had that once but it was a pretty intense 3-hour testing process. If they didn't do that, I don't know how they could diagnose that.
Anyway, I'd go to a GI and take it it from there. You don't say what your specific symptoms are, but since you mentioned food poisoning and SIBO, I'm guessing diarrhea. That could be Crohn's, but it could also be a lot of other things--IBS, Celiac.
posted by Automocar at 11:46 PM on September 5, 2015
I'm surprised you were diagnosed with SIBO--I had that once but it was a pretty intense 3-hour testing process. If they didn't do that, I don't know how they could diagnose that.
Anyway, I'd go to a GI and take it it from there. You don't say what your specific symptoms are, but since you mentioned food poisoning and SIBO, I'm guessing diarrhea. That could be Crohn's, but it could also be a lot of other things--IBS, Celiac.
posted by Automocar at 11:46 PM on September 5, 2015
I mentor a man who has got a damn nasty Crohn's thing going on. He has Crohn's, but Crohn's has him, morelike.
Interestingly, one of the questions a doc will ask when determining if a person might have Crohn's: Are you Jewish? Specifically, are you of Ashkenazi Jewish heritage? Crohn's, Huntingtons, a few types of cancer, they'll show up more in people with Ashkenazi Jewish bloodline.
Mike has gotten deeply involved in the community of those suffering it, he's a good public speaker and he's used that skill, he's got lots of contacts both IRL and online -- there is a tremendous amount of online support, both live chats and forums, for people suffering Crohn's. Mike has found a lot of good there, references to good information, to good doctors, also doctors to shy away from, etc and etc.
Depending upon what state you live in (I'm assuming US), a lot of people have found that medicinal marijuana has been really helpful. And more each day, more research each day, breeding strains of it that address this illness or that one -- marijuana looks to be a boon for many that no other medications can reach. And it's not like you have to turn into some Grateful Dead freak and smoke the stuff all day long and act the fool, it seems that just a bit does the deal for many people, and it can be smoked at night and the effects hold through the next day. Again, all dependent upon what state you live in, because the US is insane, but if you're in Colorado or California or Arizona it might be worth looking into, at the very least discussing it with your doc.
I'm going to see Mike tomorrow -- shoot me a note if you want more info, Mike is always glad to help.
posted by dancestoblue at 2:01 AM on September 6, 2015 [1 favorite]
Interestingly, one of the questions a doc will ask when determining if a person might have Crohn's: Are you Jewish? Specifically, are you of Ashkenazi Jewish heritage? Crohn's, Huntingtons, a few types of cancer, they'll show up more in people with Ashkenazi Jewish bloodline.
Mike has gotten deeply involved in the community of those suffering it, he's a good public speaker and he's used that skill, he's got lots of contacts both IRL and online -- there is a tremendous amount of online support, both live chats and forums, for people suffering Crohn's. Mike has found a lot of good there, references to good information, to good doctors, also doctors to shy away from, etc and etc.
Depending upon what state you live in (I'm assuming US), a lot of people have found that medicinal marijuana has been really helpful. And more each day, more research each day, breeding strains of it that address this illness or that one -- marijuana looks to be a boon for many that no other medications can reach. And it's not like you have to turn into some Grateful Dead freak and smoke the stuff all day long and act the fool, it seems that just a bit does the deal for many people, and it can be smoked at night and the effects hold through the next day. Again, all dependent upon what state you live in, because the US is insane, but if you're in Colorado or California or Arizona it might be worth looking into, at the very least discussing it with your doc.
I'm going to see Mike tomorrow -- shoot me a note if you want more info, Mike is always glad to help.
posted by dancestoblue at 2:01 AM on September 6, 2015 [1 favorite]
I have a Crohn's/UC (they haven't fully decided which-- different doctors, different diagnosis; I stopped caring which).
I was diagnosed at 24, but I'd had symptoms for years before that. Mine presented atypically-- I present first with the arthritis and low level fever before the bloody diarrhea starts. Since I didn't have the classic signs until later, I was diagnosed with everything ranging from IBD to "it's all in your head". Basically, until the ulcers turned up, they didn't have much to go on. I've always been told Crohn's is familial, but they don't know exactly how.
posted by frumiousb at 2:12 AM on September 6, 2015
I was diagnosed at 24, but I'd had symptoms for years before that. Mine presented atypically-- I present first with the arthritis and low level fever before the bloody diarrhea starts. Since I didn't have the classic signs until later, I was diagnosed with everything ranging from IBD to "it's all in your head". Basically, until the ulcers turned up, they didn't have much to go on. I've always been told Crohn's is familial, but they don't know exactly how.
posted by frumiousb at 2:12 AM on September 6, 2015
Response by poster: Automocar: about the SIBO, they administered the lactulose breath test, but the result was negative. Then they said the result must have been negative because I had a variant form of SIBO, so I don't know why they bothered with the test in the first place. I can't remember if they did tests for anything else, too. At one point my regular doc at the time said I probably had IBS. I know I've never had a colonoscopy.
I don't have fever or weight loss. I do have mouth ulcers and am Ashkenazi Jewish. Symptoms are mainly severe, painful diarrhea that goes on for hours immediately after eating. There doesn't seem to be any pattern apart from it happening when I'm already not feeling well. Also lots of bloating. It started in my mid-20s (no problems before that apart from anxiety-related stomachaches) and has gone on for 6 years. Some years are worse than others.
If there's a more likely problem or kind of doctor I should see, please tell me that too. Thank you all for your answers.
posted by lilpinksockpuppet at 4:28 AM on September 6, 2015
I don't have fever or weight loss. I do have mouth ulcers and am Ashkenazi Jewish. Symptoms are mainly severe, painful diarrhea that goes on for hours immediately after eating. There doesn't seem to be any pattern apart from it happening when I'm already not feeling well. Also lots of bloating. It started in my mid-20s (no problems before that apart from anxiety-related stomachaches) and has gone on for 6 years. Some years are worse than others.
If there's a more likely problem or kind of doctor I should see, please tell me that too. Thank you all for your answers.
posted by lilpinksockpuppet at 4:28 AM on September 6, 2015
I had mouth ulcers and swelling/arthritic-type symptoms in my ankles and knees and fevers as well as extreme fatigue and rapid weight loss. The GI part was actually lower on the list.
A colonoscopy will likely play a large role in helping you and your doctor rule things out. The CRP sedimentation rate in blood tests is also something to check for an indication of inflammation in your body.
posted by stefnet at 5:55 AM on September 6, 2015
A colonoscopy will likely play a large role in helping you and your doctor rule things out. The CRP sedimentation rate in blood tests is also something to check for an indication of inflammation in your body.
posted by stefnet at 5:55 AM on September 6, 2015
Mr. Purenitrous had mouth ulcers, GI symptoms-maybe sudden weigh loss, too. He had already been diagnosed with pretty severe psoriasis, another auto-immune disorder, and his birth mother has RA. His barber noticed he was developing weird random bald spots. Still, with all these classic symptoms-which the most cursory googling identifies as likely Crohn's-it took forever for his GP to refer him to a gastroenterologist. One colonoscopy later and he was diagnosed. And, as an aside, 6 years later and his disease has been very well-managed with biologics-currently Humira. Thank God for good health insurance.
posted by purenitrous at 8:21 AM on September 6, 2015
posted by purenitrous at 8:21 AM on September 6, 2015
I was diagnosed with Ulcerative Colitis last year. My only symptoms at the time were diarrhea for a couple of months and eventually, bleeding. I lost a fair bit of weight as well but didn't make the connection until afterwards. I was diagnosed by colonscopy. I'm at the end of my first flare up and that was completely different - I had a month of increasing cramping/abdominal pain before the bleeding and diarrhea kicked in. My abdomen in still noticeably swollen after three weeks of steroids but I've never had a fever.
Your symptoms actually sound similar to my boyfriend's before he was diagnosed as gluten intolerant (not Celiac) - hours of diarrhea every day, constantly bloated and terrible heart burn. He did a blood test after a number of family members were also diagnosed. When he was diagnosed he decided to do the FODMAP diet for a few months and it turns out he can't eat onion or garlic either - maybe you have an undiagnosed food intolerance?
posted by Wantok at 7:34 PM on September 6, 2015
Your symptoms actually sound similar to my boyfriend's before he was diagnosed as gluten intolerant (not Celiac) - hours of diarrhea every day, constantly bloated and terrible heart burn. He did a blood test after a number of family members were also diagnosed. When he was diagnosed he decided to do the FODMAP diet for a few months and it turns out he can't eat onion or garlic either - maybe you have an undiagnosed food intolerance?
posted by Wantok at 7:34 PM on September 6, 2015
Definitely get yourself to a gastroenterologist. My UC diagnosis at age 20 came after several months of severe diarrhea. Basically a gastro doc will first rule out easy things like c. Diff and other bacterial things, then they might do various other tests like a barium enema, or they might just go directly to a colonoscopy. Don't be afraid of that, it's a super-simple procedure. You fast for a day on clear liquids, drink some salty stuff to clear out your colon, and then they knock you out for the short procedure itself. You then go back home and eat lightly and maybe nap a bit. Super easy and zero pain.
After 20 years of treated colitis (or maybe Crohns if they diagnosed me wrong all those years ago) I developed a tumor, which caused narrowing of the colon, which got me emergency surgery and a colostomy last week. The symptoms of that were not being able to to eat solid food without it feeling like it was getting painfully stuck at a particular point in my gut. So get your colon checked out thoroughly now because the price if it IS something serious is high. Push your doctors on this.
posted by MsMolly at 7:34 AM on September 7, 2015
After 20 years of treated colitis (or maybe Crohns if they diagnosed me wrong all those years ago) I developed a tumor, which caused narrowing of the colon, which got me emergency surgery and a colostomy last week. The symptoms of that were not being able to to eat solid food without it feeling like it was getting painfully stuck at a particular point in my gut. So get your colon checked out thoroughly now because the price if it IS something serious is high. Push your doctors on this.
posted by MsMolly at 7:34 AM on September 7, 2015
Hopefully you'll still see this...
I was just diagnosed with Crohn's at 26. I've had GI symptoms since about 17 years old (and my dad has Crohn's), but started experiencing persistent lower abdominal pain last fall, and then severe pain this past spring, and then diarrhea and a sudden 10-lbs-in-a-month weight loss this summer, when I finally had a colonoscopy and was diagnosed. Definitely see a GI and don't let them tell you it's "nothing" unless there are test results to prove it.
My doctor is also great about treating based on quality of life, not just on what test results so, so look for an empathetic doctor who actually cares about how miserable your life is when your intestines are slowly destroying themselves.
posted by raspberrE at 6:32 PM on September 17, 2015
I was just diagnosed with Crohn's at 26. I've had GI symptoms since about 17 years old (and my dad has Crohn's), but started experiencing persistent lower abdominal pain last fall, and then severe pain this past spring, and then diarrhea and a sudden 10-lbs-in-a-month weight loss this summer, when I finally had a colonoscopy and was diagnosed. Definitely see a GI and don't let them tell you it's "nothing" unless there are test results to prove it.
My doctor is also great about treating based on quality of life, not just on what test results so, so look for an empathetic doctor who actually cares about how miserable your life is when your intestines are slowly destroying themselves.
posted by raspberrE at 6:32 PM on September 17, 2015
This thread is closed to new comments.
Onset for my mom was significant weight loss without trying and severe abdominal pain that persisted for months. She was treated unsuccessfully by a psychiatrist (!) for almost a year before a GI admitted there could be a physical cause for her symptoms.
Onset for me was painful, urgent diarrhea that lasted for months and gradually worsened to diarrhea with blood. I was treated empirically on suspicion of C. diff (negative) and then diagnosed by colonoscopy with UC.
Both of us were diagnosed in our early 20s -- the most common time to develop IBD.
For what it's worth, while there is certainly a genetic component to IBD, it is not a monogenic disease and the 23andme analysis is not particularly good (according to them my IBD risk is very low), because no one really knows the genetic basis of IBD.
posted by telegraph at 7:31 PM on September 5, 2015 [1 favorite]