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 almost dying to be diagnosed as I was misdiagnosed countless times.
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.Took me almost dying to be diagnosed as I was misdiagnosed countless times.
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...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?
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.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
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.I agree, diagnostics is so far a huge failure. It costs lives. It does remind me of the TV series "House"
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.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..
Cleveland Clinic has financial assistance programs. However, no luck for Illinois Residents.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.
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?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.
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.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?
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.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??
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.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!!!!!
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.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.
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.
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.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.