How Long did it Take to Receive a Diagnosis

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Justin1982

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I'm just wondering how long everyone else suffered before getting an "official diagnosis". Took me a good 20 years, 120 pounds of weight loss, and a huge reduction in quality of life....

Wonder why Crohn's is so hard to spot...
 
It took about 10 years. First diagnosis, after a scope, was IBS, so I just lived with it for years. Then it was lactose intolerance, but after a couple of months lactose free, symptoms came back. Ended up in ER with diverticulitis, and the Crohn's showed up on the CT scan. They called it "suspected Crohn's" and it was a few months later when the diagnosis was confirmed by scope! It does seem to take a while to diagnose!
 
Seems to be a running theme here. Lack of proper diagnosis.

I too was "IBS" for years. I didn't know IBS caused 55% weight loss + Kidney Stones.. but hey.

I wonder if Doctors are leery to diagnose Crohn's or too few understand the disease.
 
Similar story here. I was first diagnosed with IBS and I just assumed it was correct for five years.

But then things got worse and worse and I ended up in A&E. I got an immediate clinical diagnosis of Crohn's that night and was put on steroids immediately, with the Crohn's diagnosis being confirmed by colonoscopy a week later.

I put my misdiagnosis down to my GP being too proud and stubborn to admit that she might have been wrong. Towards the end of the five years I questioned my IBS diagnosis several times, but she just kept insisting that was it and refused to even do a blood test for me. I even suggested Crohn's at one point after reading about it in a magazine and was told that it wouldn't be anything that serious.

I often wonder whether, had my Crohn's been seen earlier, I would have had all all the difficulty I have had in getting it under control and needed all the surgery that I have had.
 
Wow and I thought a couple of years was a long time. Ten years ago I had a Traumatic Brain Injury at age 15. For the first six years, I had severe stomach issues but my docs at the time discounted it as gastritis from all the meds I was taking and IBS from stress. It took loosing 30lbs in 6 weeks for my GI doc to finally believe that my issues weren't just IBS. I guess it did help that I have a family history of Crohn's (my grandmother has had it for years), so it was one of the first considerations.
 
Seems like a common theme... Diagnosed with IBS for at least 10 years prior to crohns diagnosis. IBS seems to be a go to catch all syndrome to cover all GI related ailments until it gets really nasty.......
 
24 years of changing diagnosis. Lactose intolerance, Gallbladder, finally IBS until being diagnosed with Crohns on the operating table for resection due to full obstruction. Surprise!

My gp is pretty young and when the GI said IBS she just went with it even when I lost 70 pounds and kept vomiting. The ER sorted things really quickly.
 
IBS for 3 years until it got unbearable, constant D, pain, cramping etc. Once I found a specialist and pushed to look deeper, it didn't take very long. He went procedure by procedure until a barium drink with a small bowel follow through highlighted the problem in my small intestine. It's been a fun ride ever since...
 
Amaze said:
Took me almost dying to be diagnosed as I was misdiagnosed countless times.
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Same here. Took 4 years, countless scans, 3 hip dislocations, down to less than 92 lbs (that's my post-hospital weight), unable to swallow for almost a month, etc. before a GI got involved and I got scoped. I was never diagnosed with IBS; codeine for the joint problems and throat ulcers masked my gut issues. Before being diagnosed with Crohn's, nobody was sure what I had, and I saw infectious disease specialists, rheumatologists, physiatrists, dermatologists, etc. Nobody put it together that all the different organ systems that were going haywire were going haywire from one underlying cause.
 
Took me 6 months of c-diff infections, 4 years of "IBS", lost 30 pounds, and 2 primary docs and 3 GI specialists before I was finally diagnosed with UC. I knew there had to be more than just IBS so I was so glad when I met my current GI who diagnosed me after her first scope which she did as soon as she could after she met me.
 
3 years of IBS diagnosis and multiple scans etc... until it was found by accident I guess. Nothing else eased my symptoms untilIi started on the most basic of drugs, Asacol. After that they gave it a second look and said Crohns of the TI along with Colitis . The Colitis faded and comes back every so often . Constant pain with the TI but now my doc just dimissses it and says he is not convinced either way.
Very poor system indeed. Extremely frustrating. Lost my career as a musician and has taken me four years to get my life back on track.
Doctors need a lesson in humanity/ honesty
 
jeez...I had no idea that it took so long for other people to actually get a diagnosis. I had symptoms for about 3 months, then I got my results about a week and a half after my colonoscopy...I must be lucky :I
 
Took about 3 months to get a diagnosis. Had flu like symptoms for many months prior before the extreme blood loss. I was hospitalized the entire time they tried to get a diagnosis. This happened 23 years ago so I'm not entirely sure why it's taking longer these days to get a diagnosis. Might just be the luck of the draw with doctors.
 
I was very lucky and diagnosed through a colonoscopy 5-6 months after I started getting symptoms, but it was because me and my doctor knew the warning signs as my brother had been diagnosed 2 years before.
 
Its sad its such a long process I think it would be easier if Drs listened. I was 10 when I started to get Symptoms pain, Rectal bleeding, fatigue and growth problems. Mum took me to the Drs straight away and got referred to a paediatrician. But for three years my parents where accused of abusing me, i was accused of being lazy or bullied. Was sent to a dietician as they decided it was an eating disorder then a shrink o and a special school! During this time not one person did a scope, it was not until my mum lost it was my GP he referred me to a Surgeon who scoped it and diagnosed it immediately I was 13 by this time. Because it had been going on so long I was so ill at that point I don't know how I survived, severely stunted my growth though.
 
I have been in pain now for 8 months, still undiagnosed. I have had CT scans, ultrasounds, x-rays, everything but a traditional scope. Seen a general surgeon twice about a possible scope, both times he suggested other tests and sent me back to my GP.
 
Hadn't been "right" for years, but after bleeding for a few days, saw my GP ,had sigmoidoscopy and biopsies at hospital, and was on meds in under 4mnths.
 
It was about two months. However in that period of time I was waiting for my consult date with a GI, things went downhill quickly, I ended up n the ER near death, and was diagnosed with having either Crohn's or UC during the week hospital stay. They confirmed which ne it was at my follow up.
 
It seems like for most of us it wasn't until we were "near death" or gravely ill that we got a diagnosis? I feel that the issue lies within physicians being cognizant of signs/symptoms. I work in public health, and physicians daily and can understand both sides but it really shouldn't take as long as it does.
 
It took me nine years. My problem was that my mother didn't believe me and told every doctor I saw that I was faking it. They chose to believe her over me, so my symptoms were dismissed. Eventually they increased in severity, and while my mother continued to alternate between, "You're faking it," and, "It's anxiety," (I never indicated in any way that I had anxiety) I finally got a doctor to refer me to a GI.
 
Amaze said:
Took me almost dying to be diagnosed as I was misdiagnosed countless times.
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I've counted up about a dozen doctors in the last 5 or 6 years... Guess you've got to be on death doorstep to acquire a listening ear.

I had IBS, Celiac, Rapid Gastric Dumping, Hypochondria, etc....

Got to point I stopped eating because food repulsed me. I got sick whenever I ate a bite and had zero appetite... Took 7 months to stabilize that out after my 20 yrs of pleading for help.

Something to be said about doctors, huh?
 
Justin1982 said:
I've counted up about a dozen doctors in the last 5 or 6 years... Guess you've got to be on death doorstep to acquire a listening ear.

I had IBS, Celiac, Rapid Gastric Dumping, Hypochondria, etc....

Got to point I stopped eating because food repulsed me. I got sick whenever I ate a bite and had zero appetite... Took 7 months to stabilize that out after my 20 yrs of pleading for help.

Something to be said about doctors, huh?
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the medical world sucks. The other day I had an appointment with my primary doctor but she cancelled and I wasnt notified so instead they stuck me in with one doc who couldnt tell where her head begins from her ass. She literally pulled out her phone and googled my symptoms I was telling her...


Before I was diagnosed a doc told me it was all in my head and it is humanely impossible to go to the bathroom that many times. Another doctor told me I just had a stomach ache and I was drug seeking for narcotics... I have many horrible experiences with doctors I dont know where to start

you're right. Death is the only way for them to notice. Took me almost dying.... no joke... almost dying
 
About 4 -5 months back in 1990 his primary Dr thought he had a stomach virus. Then months later his dad took him to the ER & that's when he had his first surgery.
 
18 years. A lot of IBS thrown at me in between psychotherapy, pain management and physical therapy for "chronic pain syndrome." Got my diagnosis of UC after 18 years of that and 2 years later my colon came out. Finally have my life back!!!!
 
Amaze said:
the medical world sucks. The other day I had an appointment with my primary doctor but she cancelled and I wasnt notified so instead they stuck me in with one doc who couldnt tell where her head begins from her ass. She literally pulled out her phone and googled my symptoms I was telling her...


Before I was diagnosed a doc told me it was all in my head and it is humanely impossible to go to the bathroom that many times. Another doctor told me I just had a stomach ache and I was drug seeking for narcotics... I have many horrible experiences with doctors I dont know where to start

you're right. Death is the only way for them to notice. Took me almost dying.... no joke... almost dying
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A bit off topic, but here's one for the story books (Non Crohn's). I was 16 or 17 began to feel ill over winter break. So I told my mom I REALLY needed to see a doctor, and I don't think we'll be able to go visit her parents.

My family doc was gone for 3wks and there were fill-ins. First doctor told me I had the flu, go home get some bed rest. I knew to high hell it wasn't the flu. Day or two later, I said mom I REALLY need to go back to doctor. So we go a second time.

Dr. #2 tells my mom what's your ulterior motive? Your child was JUST HERE few days ago. He has the flu. He's being a hypochondriac and to get him rest.

Well I get much much worse and tell my mom I REALLY need to see the doctor. I think a week or two passed. So I go back in, and by this time I'm hacking up blood. MY NORMAL doctor, very concerned asked, "Why weren't you here sooner and has anyone done a chest X-ray"?

Yes... Jackass #1 and #2 told me nothing's wrong and No X-ray.

Come to find out, both lungs had become engulfed in blood. They wanted to immediately hospitalize me. I refused. I ended up having a SEVERE CASE of double pneumonia that nearly killed me. Took 6 weeks and almost missed a month of school before I was better.

Moral.... Medicine isn't about doctors being right on their own preconceived notions. It's about doctors listening so a proper diagnosis can be made.
 
durwardian said:
I agree, diagnostics is so far a huge failure. It costs lives. It does remind me of the TV series "House"
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If Dr. House were real, we'd all have a diagnose pronto. Unfortunately, many have suffered long and hard, before some doctor came along with open ears.

Sad, but true. In my experience, doctors are more interested diagnosing a problem, than being right about the diagnosis.
 
For me, I got my first diagnosis for Crohn's disease when I was 18. I ended up in the hospital when I was 17 and was there for three days with what they wanted to call a Kidney Infection. I was put on strong antibiotics and pain killers for a month and told it would go away. It didn't. They did a barium x ray, found inflammation, then moved on to a colonoscopy. My first GI was a knuckle head and said that even though he found ulcers and inflammation in my ileum and large intestines, he thought I probably just had IBS. Unfortunately, this diagnosis postponed treatment for a year for me. I changed GIs and my new one diagnosed me right away. Started on treatments, went into remission. Recently, I am having another flare up and she wanted to make sure I actually had Crohn's. My third colonoscopy confirmed it without a doubt. Now I am on Humira and hoping that kicks it into remission.
 
Well, I'm not sure if this counts but I'll post it anyway.. It took me about 4 months to get officially diagnosed, but 2 months after my first stay in the surgical ward of the local hospital... I got diagnosed on October 22nd 2013 (by a private surgeon who deals with a lot of Crohns).... And then on February 14th I traveled away to see a GI, who promptly told me in a very long winded and technically worded story that he didn't think I had Crohns.. So bam, my diagnosis got taken away and I got taken off my pentasa (have been getting steadily worse ever since, but never got better while on them) and now I'm back in no-mans-land waiting for the next word of whatever is going on... The GI thinks it is Endometriosis showing up as Crohns, so I see a gynecologist next week.. The wait begins.
 
I have been having gut issues for over 2 years. I have been told IBS even though my symptoms do Not fit the IBS criteria. I had lots of tests so far but nothing has been able to be picked up. Here is the scary part, when you have these tests, it all depends on how good the doctor is who is doing the test or reading the Scans. I mean you can have all the best tests and have a doctor who is mediocre and not efficient at his/her job. That is where people get mis-diagnosed.

I have lost faith in the medical profession sadly. I mean I know there are some good doctors out there, but sadly, that is becoming a thing of the past it seems. It gets to a point that you go to the doctor and you come out broke and with still No answers. I really think doctors do Not know much about these diseases. They are very complex and hard to treat. The medications they use to treat the disease are sometimes more dangerous than the disease itself!

I agree though, it should NOT take so long to get a proper diagnosis. I mean again, it all depends on the knowledge of the doctor a person is seeing. If you have a doctor who is nonchalant and passive, well you are not going to get anywhere. The hard part is finding a good doctor who is willing to take the time out to listen and to really help. This is the hard part..
 
Ihurt said:
I have been having gut issues for over 2 years. I have been told IBS even though my symptoms do Not fit the IBS criteria. I had lots of tests so far but nothing has been able to be picked up. Here is the scary part, when you have these tests, it all depends on how good the doctor is who is doing the test or reading the Scans. I mean you can have all the best tests and have a doctor who is mediocre and not efficient at his/her job. That is where people get mis-diagnosed.

I have lost faith in the medical profession sadly. I mean I know there are some good doctors out there, but sadly, that is becoming a thing of the past it seems. It gets to a point that you go to the doctor and you come out broke and with still No answers. I really think doctors do Not know much about these diseases. They are very complex and hard to treat. The medications they use to treat the disease are sometimes more dangerous than the disease itself!

I agree though, it should NOT take so long to get a proper diagnosis. I mean again, it all depends on the knowledge of the doctor a person is seeing. If you have a doctor who is nonchalant and passive, well you are not going to get anywhere. The hard part is finding a good doctor who is willing to take the time out to listen and to really help. This is the hard part..
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The level of treatment hinges upon a doctor's competency of what's being treated. Check out Cleveland Clinic if you're in the U.S. I had success there seeing some of the top ranked physicians. Where all else failed, I finally found a receptive ear.

No fun to suffer in silence, and be told nothing is wrong. Good luck.
 
Justin1982,

Thanks for the tip. Unfortunately, I live in Chicago IL and my insurance will not cover me getting treatment out of network. I could not afford it. I went to the mayo clinic back 8 years ago in Jacksonville Florida for another health condition and ended up having to spend over $10,000 out of pocket. No way I could afford it unfortunately. I mean I could not even afford all the re-testing.
 
So far it's taken 5 years and two GI doctors. Was diagnosed after inflammation found on biopsy at TI, BUT also had an inflammed GB that was just removed. Now he wants to " reconfirm" the diagnosis in light of the bad GB. Go for another colonoscopy in 10 days.
 
Ihurt said:
Justin1982,

Thanks for the tip. Unfortunately, I live in Chicago IL and my insurance will not cover me getting treatment out of network. I could not afford it. I went to the mayo clinic back 8 years ago in Jacksonville Florida for another health condition and ended up having to spend over $10,000 out of pocket. No way I could afford it unfortunately. I mean I could not even afford all the re-testing.
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Cleveland Clinic has financial assistance programs. However, no luck for Illinois Residents.

http://my.clevelandclinic.org/patients-visitors/billing-insurance/financial-assistance.aspx

Ohio, Nevada, and Florida Residents are eligible for reduced to free care. Cleveland has been a godsend. Too bad it's financially prohibitive. I don't know where I'd be without my doctors.
 
LodgeLady said:
So far it's taken 5 years and two GI doctors. Was diagnosed after inflammation found on biopsy at TI, BUT also had an inflammed GB that was just removed. Now he wants to " reconfirm" the diagnosis in light of the bad GB. Go for another colonoscopy in 10 days.
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No rush, right? Nothing like wanting a quality of life or not feel sick. So have you gotten an official Ulcerative Colitis, Crohn's diagnosis, or are you awaiting confirmation?
 
H everyone!!! These stories hit home!! Sounds like my life for the past 25 years!! STILL undiagnosed though!! Several surgeries, bowel obstructions, a lifetime of constipation, abdominal pain and cramping etc. Had a preliminary diagnosis of crohns after my 2nd bowel resection surgery after small intestine developed a perforation only to have a GI negate the diagnosis of crohns! Been living in pain and desperation for a diagnosis every since! Most recently had a GI bleed! Colonoscopy reveal the source of bleeding to be ulcers on the terminal ileum! BUT can you believe no biopsy was done??????!! Surgeon and GI decide it's erosions from NSAIDs! I don't feel I take that many NSAIDs! Current have extreme constipation extreme fatigue, sleeplessness, general malais and flu like feelings!! Any would appreciate any I put you have to offer!!!I'm pushing for a diagnosis!!! This has gone on for way TOO long??
 
Justin1982 said:
No rush, right? Nothing like wanting a quality of life or not feel sick. So have you gotten an official Ulcerative Colitis, Crohn's diagnosis, or are you awaiting confirmation?
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I was given the Crohns's diagnosis, although the biopsy showed mild inflammation. Since the GB has been removed ( 1 month now) still have cramping , weight loss, constipation. He wants to rule out symptoms post surgery vs. inflammation. He is going to take many more biopsies than before. I should hopefully have se answers in 3 weeks.
 
Chuckmya,

Oh wow, this is terrible. I am shocked that your doctors have not given you a diagnosis with all that has happened to you! I mean resections and surgery, yet no diagnosis?? Sounds like you have some incompetent doctors. I would seriously look into getting an experts opinion, especially seeing that you have had serious issues already. For your GI to just say NSAIDS caused you to have inflammation is so outrageous. I mean I will be honest, usually with overuse of NSAIDS, there is also inflammation in the stomach as well. I find it very odd that your GI would say NSAIDS was the cause of inflammation only in the TI. I am so sorry you are dealing with all this. I do feel for you. There are sooooo many BAD doctors out there, it is very hard to find one who has expertise in their field these days....
 
Thank you so much for your comment ihurt! Sometimes these doctors make you feel like your making these things up!! There's no denying obstructions perforations and surgery to correct these issues!!! I just wish they had done a biopsy of those ulcers on the terminal ileum! That might have given them the confirmation they needed!! Ugh!!
 
Yes, I agree with you, why the heck did they not take a biopsy? So ignorant on the doctors part. I know when I went in for my colonoscopy, I made sure I told the doctor to absolutely take biopsies no matter what. It is sad, but you have to be your own advocate these days. But seeing as you have had so many issues already, some that have required surgery, that speaks for itself. I would point blank ask your GI if he does not think you have crohn's, then what does he think you have? Also, I would definitely question his thoughts on why he thinks NSAIDS have caused ulcers in your TI. Inflammation from NSAIDS usually always cause inflammation in the stomach and duodenum as well. If your ulcers are Only showing up in the TI, this likely not from NSAIDS. I am so frustrated for you. Is there any way you can try and get a different opinion from a different Gastro doctor?
 
chuckmya said:
H everyone!!! These stories hit home!! Sounds like my life for the past 25 years!! STILL undiagnosed though!! Several surgeries, bowel obstructions, a lifetime of constipation, abdominal pain and cramping etc. Had a preliminary diagnosis of crohns after my 2nd bowel resection surgery after small intestine developed a perforation only to have a GI negate the diagnosis of crohns! Been living in pain and desperation for a diagnosis every since! Most recently had a GI bleed! Colonoscopy reveal the source of bleeding to be ulcers on the terminal ileum! BUT can you believe no biopsy was done??????!! Surgeon and GI decide it's erosions from NSAIDs! I don't feel I take that many NSAIDs! Current have extreme constipation extreme fatigue, sleeplessness, general malais and flu like feelings!! Any would appreciate any I put you have to offer!!!I'm pushing for a diagnosis!!! This has gone on for way TOO long??
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Don't know where you are in world but cleveland clinic in ohio has been my lifeline. Only doctors to cut the bullshit, finally listen, and give me a proper diagnosis.
 
I'm in the northeast!! Anyone know of a good GI doc in Boston??? Beth Israel deaconess, mass general or danna farber??? Plz help if you know of a good doc in the boston area! Thanks!!!!!
 
In 2000 I had a major surgery due to perforation! I ended up with bowel resection surgery with a temporary ileostomy! I was @ that time diagnosed with crohns and placed on Asacol. Then was referred to a GI would also took the diagnosis away!!! Ugh!!! It's been a uphill batal every since several obstructions later and several surgeries later I'm still struggling with and the symptoms and complications! 😁😁😁
 
I first went to the pediatrician 6-9 months after I started having symptoms(which started off very mild) and was diagnosed 2 months later.

Ironically I first went to the pediatrician for chest pain, a racing heart and lightheadedness-I didn't mention the digestive symptoms because I was too embarrassed and was convinced they were no big deal. My 17-year-old self was certain that there was no possible way diarrhea could be serious.

I was found to have a hemoglobin count of 5.3 - not a typo. They were in shock I was still up walking around.

The night those results came back, my mom got a call that I was expected to show up at the pediatric hematologist-oncologist at 8 AM the next morning and we better be there. Good thing I was so naive as to think that was just the top-notch customer service they offered patients and didn't realize that getting told to go to hem-onc with no appointment means they think you're dying. I can laugh about it now, right?

It's a complicated story, but I ended up at the correct specialist the next month and was spared the normal 3 month wait for an appointment and gotten in immediately for an appointment and a scope that found pancolitis. The rest is history.
 
chuckmya said:
I'm in the northeast!! Anyone know of a good GI doc in Boston??? Beth Israel deaconess, mass general or danna farber??? Plz help if you know of a good doc in the boston area! Thanks!!!!!
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MGH and BWH have Crohn's/Colitis Centers, and Beth Israel has an IBD Program. I am sre you could find what you need there.
 
LodgeLady said:
I was given the Crohns's diagnosis, although the biopsy showed mild inflammation. Since the GB has been removed ( 1 month now) still have cramping , weight loss, constipation. He wants to rule out symptoms post surgery vs. inflammation. He is going to take many more biopsies than before. I should hopefully have se answers in 3 weeks.
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Good luck. Worst part of Crohn's is people see you and think hypochondriac. Until I literally dropped down to the point I resembled a skeleton, getting a diagnosis was hard. I'd lost 120 pounds,, stopped eating, etc.


Mild... Is there ANYTHING mild about Crohn's? My doctor said Mild Ileitis. Mild or NOT, sick is sick. Luckily, he's treating me aggressively and I'm starting to improve, gain weight, and get some energy back. I have my good days and bad still.

My Biopsy showed:

Patchy active ileitis with focal pyloric gland metaplasia. The biopsy from the terminal ileum shows patchy and mild neutrophil-mediated surface and crypt injury. A single focus of pyloric gland metaplasia is identified.

Had a positive Fecal Occult, too.

Lucky here, no resections, fistulas, etc. I have a lot of kidney stones due to Crohn's, though. Assume GB = Gall Bladder? Are you on Medication? What Drug? I'm on Entocort 9mg for the past year.
 
Right now I am not on any medication. My GI doesn't want to start anything until after the biopsies. My inflammation is also in the ileum ( ileitis). Yes GB means gallbladder . Further reading is telling me inflamed GB's are common in people with Crohn's. Mine was totally inflamed and non functioning had to come out. People I know don't understand why I am so concerned about losing the weight. Everyone thinks I look great. I am down 20 lbs. haven't gained any since GB surgery. 6 weeks ago. Makes me feel bad for mentioning it. People just don't understand.

Well I start my prep in 8 hrs. Colonoscopy Monday. Praying for some answers.


Justin1982 said:
Good luck. Worst part of Crohn's is people see you and think hypochondriac. Until I literally dropped down to the point I resembled a skeleton, getting a diagnosis was hard. I'd lost 120 pounds,, stopped eating, etc.


Mild... Is there ANYTHING mild about Crohn's? My doctor said Mild Ileitis. Mild or NOT, sick is sick. Luckily, he's treating me aggressively and I'm starting to improve, gain weight, and get some energy back. I have my good days and bad still.

My Biopsy showed:

Patchy active ileitis with focal pyloric gland metaplasia. The biopsy from the terminal ileum shows patchy and mild neutrophil-mediated surface and crypt injury. A single focus of pyloric gland metaplasia is identified.

Had a positive Fecal Occult, too.

Lucky here, no resections, fistulas, etc. I have a lot of kidney stones due to Crohn's, though. Assume GB = Gall Bladder? Are you on Medication? What Drug? I'm on Entocort 9mg for the past year.
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LodgeLady said:
Right now I am not on any medication. My GI doesn't want to start anything until after the biopsies. My inflammation is also in the ileum ( ileitis). Yes GB means gallbladder . Further reading is telling me inflamed GB's are common in people with Crohn's. Mine was totally inflamed and non functioning had to come out. People I know don't understand why I am so concerned about losing the weight. Everyone thinks I look great. I am down 20 lbs. haven't gained any since GB surgery. 6 weeks ago. Makes me feel bad for mentioning it. People just don't understand.

Well I start my prep in 8 hrs. Colonoscopy Monday. Praying for some answers.
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Ugh on the Colonoscopy Prep. I don't know how you react, but I become very sick for a good week or two after prep. Not fun.

Seems Crohn's can cause a numerous complications. Did you get Gallstones or did the GB just stop functioning?

Mine is a damaged kidney and one loaded with kidney stones.

Ah weight loss... Try Boost / Ensure. I had to do that diet for like 4 months when I stopped eating. I was down to 109 pounds (when I use to be obese and 230). 20 Years of complaining culminated into getting so sick, but no one listened... First time in 5 years, I have gained weight. Up about 18 pounds.

People don't understand Crohn's and how miserable things can be at times. Heck, I had one doctor tell me I was still a hypochondriac even AFTER Cleveland Clinic gave me a diagnosis. Said they didn't know what they're doing.... Finally turned around and stopped being a jackass, but that goes to show the mentality of people.
 
I had my gallbladder removed as well. Wasn't full of stones, but was seriously infected and wasn't working right (only at 25%). Doc had also found signifigant GERD damage. Funny thing is, I can count on one hand the amount of times I have had heartburn and felt it.
 
I was diagnosed fairly quickly after noticeable symptoms at age 12 with UC, which changed a little while later to a diagnosis of crohn's.


Before I was diagnosed I was always get mouth sores but the dentist just chalked it down to sensitive gums but they stopped as I became 'older.'

A bit tmi but I'm pretty sure it's fine here but being 12 and finding a huge amount of blood in the toilet came down to thinking I started my period. I called my mom, she called the doctor because obviously the blood was coming out of the 'wrong' hole.

I had a colonoscopy a few days later and was told I had Colitis. Later on after getting food poisoning I had another colon and endoscopy and they decided i had crohn's.

We thought it didn't run in the family but my little brother was diagnosed with UC a few years later (fun fact: his girlfriend from high school has crohn's too. They didn't know this about one another until after they started dating, haha).

But I suppose I was diagnosed quickly because I was young? Not sure.
 
It's been almost 3years.
I've gone from ibs, crohn's, then back to ibs
then suggestive of crohn's.
to maybe it's time to see the university dr's
but take theses meds in the meantime..smh:ybatty:
 
Wow I am so sorry to everyone here. My boyfriend thought I had appendicitis and took me to the emergency room. One week and 20 lbs of weight-loss later, I came out of the hospital with a diagnosis. I thought THAT was traumatic. Whew. This sounds miserable. I am truly sorry to people who suffered for decades.
 
A few (maybe 4) weeks, went to the GP, he had a strong inkling that it was IBD, GI diagnosed it with a scope about 4 weeks after that.
 
On Thursday, we were just told that my 18 year-old son most likely has Crohn's disease. It started out about three years ago with him complaining of a stomach ache, so I took him to the doctor, and they said he most likely had a bug of some kind and that these kinds of bugs are not always specific. So, I accepted that because my son didn't complain that much and it seemed like his symptoms went away for awhile. When they did come back, I just assumed that it was another bug or that it was IBS since both his grandmother suffers from this frequently and his father on occasion as well. My son is not a complainer, so didn't realize how bad it had been getting for him until one day, I went in the bathroom after he had been in ther and saw blood in the toilet. When I asked him about this, he told me that this had been going on for quite a while. So, I took him to the doctor and had my son tell him of his symptoms. The doctor felt around his abdomen for anything unusual, then checked him for anal fissures and said that this is what the problem was. He also said he checked him for celiac disease, and said the test came back clear. I, stupidly, accepted this and just figured that it was IBS or a bug and didn't think it was anything serious. In the meantime, his usual doctor noticed that he had lost about 7 pounds since the last time he was at the doctor and did some blood tests which showed that he was iron deficient and also showed protein in his urine. We thought this may have something to do with his feeling sick to his stomach and were terribly worried that he might have kidney failure since my mother had it. They gave him iron vitamins and had him come back three more times to recheck the protein in his urine and twice, the protein was increasing, but the third test (which he brought from home) showed zero protein in his urine. We were so so relieved about this and figured the problem was his low iron count. We went back to ask about his stomach issues and the doctor had us schedule a scope and colonoscopy for the following month. Fast forward to Monday of this past week, before his colonoscopy appt, when I tried to get my son to eat his breakfast and he snapped saying his stomach was hurting him a lot. I got very worried because it is so unlike him to do that and I knew something must be very wrong, and tried to get him into the doctor that day, but could not. I tried to get him to let me take him to the emergency room, but he refused to go. I cried on the phone while trying to get him in sooner than his original appointment, and I think this is why they called me to say they could do the procedures on Thursday. I am so emotional and worried for him. I am so full of guilt for not realizing something else was going on, and so worried of what his CT will show. The one thing I cam say is you have to pay very close attention to what your kids tell you, and ask lots of questions since they don't always reveal things to you themselves. Thank you all for sharing your stories. God bless.
 
7 long years of suffering prior to any sort of diagnosis. I was diagnosed with reflex sympathetic dystrophy at 15 when they noticed I had less blood flow in my left leg. Then that progressed to idiopathic pain syndrome. Unexplainable pain mimicking arthritis. Swollen limbs. Weird rashes on joints. Severe pain in joints. Summer of 2014 I then noticed Crohn's symptoms. Frequent washroom trips. Unable to keep down foods. Sharp pains below belly button and all around. Etc . My dad has Crohn's as well so even he was getting concerns. Sent for colonoscopy as a precaution and they found Crohn's. I know in my dads experience he had arthritic issues after awhile from the Crohn's. But in my case I had the arthritis problems before the kick of the disease.
 
Wow! I'm relieved to have seen this thread. While I've been dealing with my stomach pains and issues for a while, it gives me relief to know that this can eventually be diagnosed. Granted the longer it goes on, the worse I physically feel but I know mentally I can stay stronger now.
 
It took two year for a diagnosis. The first few Dr. visits were same old story,, IBS. Even though my identical twin brother had been diagnosed over 10 years prior.
 

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