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Crohn's Disease Forum » Support Forum » Undiagnosed Club » How Long did it Take to Receive a Diagnosis


 
02-28-2014, 04:54 AM   #31
Holly95
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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.
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02-28-2014, 02:30 PM   #32
Ihurt
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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..
02-28-2014, 03:48 PM   #33
Justin1982
 
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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..
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.
02-28-2014, 05:31 PM   #34
Ihurt
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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.
02-28-2014, 06:40 PM   #35
LodgeLady
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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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03-02-2014, 08:40 PM   #36
Justin1982
 
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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.
Cleveland Clinic has financial assistance programs. However, no luck for Illinois Residents.

http://my.clevelandclinic.org/patien...ssistance.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.
03-02-2014, 08:42 PM   #37
Justin1982
 
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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.
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?
03-03-2014, 06:14 AM   #38
chuckmya
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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??
03-03-2014, 07:14 AM   #39
LodgeLady
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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?
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.
03-03-2014, 08:27 AM   #40
Ihurt
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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....
03-03-2014, 10:32 AM   #41
chuckmya
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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!!
03-03-2014, 02:15 PM   #42
Ihurt
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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?
03-03-2014, 03:40 PM   #43
Justin1982
 
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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??
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.
03-03-2014, 06:21 PM   #44
chuckmya
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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!!!!!
03-03-2014, 06:42 PM   #45
chuckmya
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I live in the northeast.... Anyone know of a good GI doc in the Boston area???
03-05-2014, 05:40 AM   #46
chuckmya
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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! 😁😁😁
03-05-2014, 03:59 PM   #47
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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.
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03-05-2014, 04:11 PM   #48
BostonWolf
 
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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!!!!!
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.
03-08-2014, 09:37 PM   #49
Justin1982
 
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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.
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.
03-09-2014, 02:47 AM   #50
LodgeLady
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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.


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.
03-09-2014, 07:49 AM   #51
Justin1982
 
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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.
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.
03-09-2014, 10:11 AM   #52
Kero
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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.
03-09-2014, 10:52 AM   #53
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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.
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03-11-2014, 04:42 PM   #54
mere282
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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
03-12-2014, 01:42 PM   #55
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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.
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03-12-2014, 07:22 PM   #56
hawkeye
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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.
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11-06-2016, 11:23 PM   #57
Cyndabell
 
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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.
11-07-2016, 07:57 AM   #58
MizzSarah
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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.
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11-29-2016, 05:00 PM   #59
gordan
 
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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.
11-29-2016, 05:09 PM   #60
jmp62575
 
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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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