How long til you were diagnosed?

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LuSmith

Joined
Jun 6, 2012
Messages
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Hey everyone,

I'm just curious how long everyone had symptoms or how long it took for doctors to make a diagnosis of your condition.

I feel like most doctors in my country are reluctant to do the proper tests when you are young (I'm in the uk) and so put you through other things first before deciding to send you for anything.

I've got a nice doctor who wants to finally get to the bottom of this but I feel like he will only give me a colonoscopy if really necessary. I'm not saying I truly want one as I would have a hard time (hemmorhoids, acid reflux problems) during prep but I feel that I'm always told to try this or try that.

Why is the attitude this way and did it take you a while to get doctors to take you seriously? Just generally interested to know.

I've had symptoms for 10 months now. :ybatty:
 
I had symptoms for about 14 months before diagnosis...but started with investigations after about 2 months - just a long time to find out what was wrong due to its location when it first reared its ugly head.

It depends what symptoms you are having, it is that really rather than age that determines what tests are done. If you have 'alarm' or 'red flag' symptoms they are more keen to do the more invasive tests eg weight loss, bleeding, vomiting, inflammation in the blood etc

Are you under a gastroenterologist?
 
No I'm not yet, but I had problems with my previous doctor for 8 months as they failed to believe my symptoms were real. My new GP is more inclined to help depending on how meds go etc but I haven't had any scarily huge amounts of blood or anything. (just little amounts in mucus from time to time). No weight loss. My main symptoms are frequency (going up to 7 times in a day), pain and tenderness in abdomen, discomfort and rectal pain/lower back ache. My stools are mostly softish, never firm and smell quite horrible sometimes. I get a lot of gas.

All this led me to draw up my conclusions it was IBS but recently I took this to the new GP after having a flare and some maroon mucus and because my brother has UC he thinks it's likely it could be an IBD. He's given me sulfasalazine but I'm going away in 2 weeks so waiting til I come back to start.

I have no way of knowing though whats truly going on and I'm only 27!
 
It isn't really accepted practice to start you on ibd therapy like sulphasalazine without having a diagnosis by a gastro. I suggest you insist on a referral to a gastro...who I don't think will be impressed that you have been started on meds without tests.
 
have you been referred to a gastroenterologist yet? if you have and they won't perform the necessary tests on you, then something is a bit wrong. colonoscopy or flexible sigmoidoscopy is pretty much the first thing they will do to you when you first visit one.

if you are still going to your GP about this then it shouldn't take 10 months to get referred, mine referred me within a week of my first visit (just had to wait to get blood test results back, which is pretty much the only diagnosis your GP is able to perform on these type of diseases).
 
"It isn't really accepted practice to start you on ibd therapy like sulphasalazine without having a diagnosis by a gastro. "

I don't think it's really accepted to bung you on any type of drug without any diagnosis, in fact it's bordering on malpractice. I'm pretty shocked that the GP has actually done this. get him to refer you asap and possibly find a new GP while you're at it.
 
This is my second doctor and its the only other one in my area. I'm happy with the GP I have, wasn't aware that he was doing something wrong. :(

I haven't been referred yet, no. My blood tests originally came back with a low level of white blood cells, and borderline anaemic (but I was having uterine bleeding for 7 months so that is probably why). After iron tablets I had another blood test and it was all normal.

Not sure why they've all been reluctant to refer me so far, possibly because I don't red flag symptoms..? Not sure :(

I will make sure I get a referral but my GP is away on leave now and also I think if I question his motives he will probably get frustrated as I'm already thought of as bonkers by my last GP for going back every week as I was suffering.
 
Basically, if he thinks you have IBD- which he clearly does as he started you on sulphasalazine, then he should have referred you to a gastro...end of. He should not really have started you on IBD meds, thats for the gastro after diagnosis. GPs can alter meds or start new meds for IBD...AFTER a diagnosis has been made by a gastro.

You need to be referred, any GP in the practice can do that. Don't worry about what he/she might think, its a perfectly reasonable request. I take it you are having the relevant bloods taken after starting the sulphasalazine to make sure they are not causing any issues.
 
Don't worry about it, I had several red flag symptoms and although my GP tried his best the GI wasn't interested... 6 years on I am sicker than ever, more symptoms and still no diagnosis.
 
I had symptoms of some kind for 5 years before being diagnosed with Crohn's at 23 years old. I was misdiagnosed with IBS, so followed a high fibre diet the whole time.
Eventually I was given a clinical diagnosis in A&E at Kings in London and put on pred immediately. The colonoscopy, capsule endoscopy and SBFT I had were just to dot the i's so to speak.

I hope you get some firm answers soon, it can be a fight.
 
I've been seeking a DX since 2 years old but when I was DX at around age 5 with IBS after a scope my family & I just accepted it. Then things got CRAZY when I was 13 and we pursued a DX endlessly until I was finally DX with Crohn's at age 15.
 
I was 9 years old and went to the ER because of a toilet full of blood. Had flu like symptoms for almost a year before. I was hospitalized and they ran all sorts of different tests for a little over two months until they sent reports to different doctors around the country who suggested Crohn's. They told me I likely had Crohn's disease and sent me to a GI specialist who did some scopes and confirmed it. So the diagnosis took about three months but they really wanted to know what was wrong as I was a child and I also found that I was the first case of Crohn's in the area. Three months is pretty quick compared to many others on the forum unfortunately.
 
littlemissh said:
Basically, if he thinks you have IBD- which he clearly does as he started you on sulphasalazine, then he should have referred you to a gastro...end of. He should not really have started you on IBD meds, thats for the gastro after diagnosis. GPs can alter meds or start new meds for IBD...AFTER a diagnosis has been made by a gastro.

You need to be referred, any GP in the practice can do that. Don't worry about what he/she might think, its a perfectly reasonable request. I take it you are having the relevant bloods taken after starting the sulphasalazine to make sure they are not causing any issues.
Click to expand...

I haven't had any discussions regarding bloods being taken but will look into it at my appointment next month. I'm nervous about taking them now but my doctors are hard to see without a reasonable reason. Do you think he would be mad if I just didn't take the medication? I think they believe that googling and believing what you read online is taboo and he'll probably be under the impression that I'm not cooperating with his wishes. I don't know.

I'll press for a referral in any case.
 
Absentminded said:
I had symptoms of some kind for 5 years before being diagnosed with Crohn's at 23 years old. I was misdiagnosed with IBS, so followed a high fibre diet the whole time.
Eventually I was given a clinical diagnosis in A&E at Kings in London and put on pred immediately. The colonoscopy, capsule endoscopy and SBFT I had were just to dot the i's so to speak.

I hope you get some firm answers soon, it can be a fight.
Click to expand...

I hear you on that. Ive tried altering my diet so many times and it's had no effect or change in my bowel habits. It's very frustrating. The precious doctor did nothing to even help me, and insisted it was in my head.

I know that I'm probably not suffering as badly as some people on this forum, and that my symptoms may seem quite mild as I've only had severe stomach pain a few times, and the rest has all been rectal based and lower back pain. The main issue I have is the frequency, the consistency and the mucus or blood. I hate running to the toilet 7 times a day especially because it makes my rectum sore and inflamed as hell!

Did they put you on the pred before the scopes or after? I'm curious to know whether it's dangerous for me to take this meds without a diagnosis.
 
I was put on pred before having any scopes.
The doctor in A&E that night happened to be a gastroenterologist, and so decided to put me on steroids straight away after hearing my symptoms. I think I may have had a blood test while at A&E, but that was it.
I realise that how i was treated may not be a common, but I'm sure the doctor wouldn't have put me on it if he hadn't been relatively sure of his diagnosis.

There will always be someone worse off than you, no matter how bad you are feeling.
But if you're not as you should be then that's something that has to be out right.
And I hear you about the sore bum from going to the loo a lot!
 
Its probably not common practice, no. Do you think my GP would have had a relatively good idea based on my symptoms? I'm not sure whether to take the meds on his recommendation and see how it goes.. If it won't harm me then it's worth a try?

Did the pred improve your symptoms?
 
The pred made me feel better pretty much immediately, mind you I was on a rather high dose.

As I'm not a doctor, and only speaking from personal experience I can't really advise you on whether to take any meds. Personally, I would hope that any doctor prescribing medication would be pretty convinced of a diagnosis before doing so.
 
Well, the first time it took about six months, even then my doctor was like I doubt you have crohns but try pentasa since it has relatively low complications. Well pentasa worked miracles for a time, with solid poo, weight regained, and feeling a ton better, until it stopped being effective. He recommended I see another Doctor, who then said I did not have Crohns, just uncontrolled diarrhea. I went through IBS meds, even Lotronex, parasite testing, celiac and food allergy, two sets of scopes, upper and lower, MRI enterography, ct with contrast, small bowl series..and nothing. She referred me to yet another physician, who by chance did the IBD blood panel, which came back positive with ANCA (indicative of crohns) and my c reactive protein and e sed rate were through the roof...this was about a month ago. Had another colonoscopy endoscopy last Thursday, with moderate to severe inflammation, and then did the pill cam on Monday. Still waiting for biopsy and pill cam results..but back to the crohns diagnosis.

So in total Ive been seeing a GI for over a year and a half trying to figure out what this disease was, and just truly diagnosed a few weeks ago. Ive had symptoms since 2009... and had an endoscopy then where inflammation was noted, but never really became bothersome till the past year or so.

My insurance company may want to kill me at this point, Oy vey.
 
Your GP should refer you to a GI to confirm or rule out a diagnosis of IBD depending. If you present with any red flags of which bleeding is one the you need further investigation to exclude serious pathology. It is a varied process as no two individuals with bowel disease are the same, that said they have a duty of care to not misdiagnose you.

It is not unreasonable to request a referral yourself as it is also not unreasonable to question what medication they wish to put you on. It is your body and therefore you have to speak up and take charge never ever worry that they will be mad at you that is not how the medical field works. If it helps bring someone along with you to your appointments and question everything. You are also entitled to a second opinion regarding any treatment / investigation so again don't be shy about asking for one.

My advice is educate yourself on all the investigations / medications etc available and go armed with knowledge. Don't just except their word as final. There are some very good doctors as well as some very poor doctors about. I got diagnosed within 6 weeks as luckily for me I was referred to a professor he then referred me onto a GI for treatment as that is their field.

Good luck and keep asking loads of questions.
 
Thank you everyone for your replies. I'll make sure to get all the answers I need.. Not sure whether to take the medication as some days I feel better than others and I get slightly concerned at the risks of taking something else my body will have to get used to (I've had so many meds this past year). I had my ESR bloods done recently which was normal as far as I know and 8 months ago I had my CRP done when I was in labour and it was normal. I think I haven't had the CRP done since.

Nikimazur I hope you get to the bottom of your problems! Sounds like you've been through a hard time, I can only hope things improve.

I don't think that my doctors bad in any way, I think slightly old fashioned perhaps in practice. He seems happy to figure out what's going on but I guess I have a number of complicated problems also that need to be sorted alongside my bowel problems so it's working things out as we go. Im gonna have a long hard think regarding the meds, I don't need to take them for a couple of weeks yet but am v nervous!
 
Lu- The medicine isn't inherently dangerous beyond side effects, it won't kill you just because you don't have uc/crohn's, it just won't do anything. That said, a positive reaction (symptom improvement) after starting drug therapy would be highly indicative of inflammatory issues.

It's not a purely standard way of doing things, but any test has sensitivity issues and risks, especially more invasive tests such as drug trials or colonoscopies. However, at least one forum member (Cat-a-Tonic) was given some answers when her prednisone trial was a success.

It's your call. I would go for it, but then I'm jaded and frustrated with doctors after 2.5 years of looking for answers.

Best of luck
Nathan
 
I agree with the others, YOU NEED BLOODWORK done with Sulfasalazine. Those who say you don't probably haven't even been on Sulfasalazine. Sulfasalazine can make your liver enzymes go SKY HIGH & can cause different types of Anemia. I know of a few people who had to be immediately taken off due to their liver enzymes being high.

I take Sulfasalazine & everyone I know who has, myself included, has to get bloodwork done monthly.

Prednisone is a miracle drug for the majority of people with IBD but it really doesn't do much for me because I can't absorb the pills. I have to usually go to the hospital to be put on IV steroids due to my malabsorption. I wouldn't take any IBD drugs if I wasn't DX. I know of someone who was DX via capsile endoscopy(without biopsies) and they gave her Crohn's medications and come to find out, those ulcers were from an infection and she spent all that money on medication for a disease she didn't have.

I hope you feel better & never give up! If your sick, you are justified in searching for answers!
 
Okay, I'll make sure I bring this up with the GP. He's only given me a two week trial, would it be safe to take and then request blood work when I see him? Based on how I react to the meds he will probably decide his next protocol dependant on if they work or not I guess.

personally I'm nervous because of the side effect possibilities, I never cope well with sickness. I wish I'd been given Pred or something but beggars can't be choosers.

Thanks though, I'll probably start the meds on my return from my trip away and see how it goes, it's only two weeks I guess.
 
Being on the tabs for 2 weeks and then having blood tests is fine. Usually checked 2-4 weeks after starting so your GP may have that planned for when he sees you next anyway.
 
LuSmith said:
Hey everyone,

I'm just curious how long everyone had symptoms or how long it took for doctors to make a diagnosis of your condition.

I feel like most doctors in my country are reluctant to do the proper tests when you are young (I'm in the uk) and so put you through other things first before deciding to send you for anything.

I've got a nice doctor who wants to finally get to the bottom of this but I feel like he will only give me a colonoscopy if really necessary. I'm not saying I truly want one as I would have a hard time (hemmorhoids, acid reflux problems) during prep but I feel that I'm always told to try this or try that.

Why is the attitude this way and did it take you a while to get doctors to take you seriously? Just generally interested to know.

I've had symptoms for 10 months now. :ybatty:
Click to expand...

I had symptoms for about 7 or 8 months before having the courage to go to a doctor, I have a close friend who also had crohns and when i was speaking to him online about my problems it sounded all to familiar so finally went, after that it took about 3 months, It would have been longer but because I got so bad I ended up in hospital my diagnosis came around a bit quicker.
 
My symptoms hit right before Memorial Day this year (May 27th 2012). I had all these tests done and still are getting done the last one is July 12th 2012. My doctor has concluded due to my results so far and a family history of Crohn's that this is what I have. Although it's not set in stone quite yet, he has talked to me about treatment and put me on the Ensure diet, since I can't eat and keep food done, plus I've lost my appetite. So I suppose really it will have taken me 2 months for a proper diagnosis, but in reality it only took a a month.
 
I feel pretty lucky because it only took eight months from the first major "event" to diagnosis. Having been given one now, my mother is convinced I've been dealing with it for years (always had undiagnosed stomach problems), but in terms of the extreme life-changing turn of events it was less than a year.

Story in a nutshell: Started with the frequent, constant, 20+ bathroom trips per day in August 2011, had a couple of stool culture tests, bloodwork done then. Went to ER at end of August/beginning of September because the major bleeding had started, more stool samples and bloodwork, referred to U/S only because I insisted there was something more than 'rhoids going on. U/S showed nothing, back to GP where we had more stool samples and referral for a sigmoidoscopy in November. Sigmoid showed nothing but symptoms had slowed down after a 3-week clear liquid diet, so I didn't do anything until things started back up February 2012. Back to the GP who referred me for a upper GI/bowel xray which came back likely for Crohn's in April, referred back to the GI for a full-on colonoscopy at end of May which confirmed Crohn's diagnosis.

Now I'm on the lovely prednisone attack, and I go back to see my GI to have conversations about the future next week. I'm actually surprised doctors (my GP especially, he's always had a sense of humour with me because my health has sucked since he took over) took me seriously because I was fully prepared for them not to. Not sure how young you are, but I've been 24/25 through this ordeal and aside from the ER docs who were convinced it was just random diarrhea with crazy blood, my doctors have been pretty good about getting to the bottom of things. :(
 
to_neverwhere said:
I feel pretty lucky because it only took eight months from the first major "event" to diagnosis. Having been given one now, my mother is convinced I've been dealing with it for years (always had undiagnosed stomach problems), but in terms of the extreme life-changing turn of events it was less than a year.

Story in a nutshell: Started with the frequent, constant, 20+ bathroom trips per day in August 2011, had a couple of stool culture tests, bloodwork done then. Went to ER at end of August/beginning of September because the major bleeding had started, more stool samples and bloodwork, referred to U/S only because I insisted there was something more than 'rhoids going on. U/S showed nothing, back to GP where we had more stool samples and referral for a sigmoidoscopy in November. Sigmoid showed nothing but symptoms had slowed down after a 3-week clear liquid diet, so I didn't do anything until things started back up February 2012. Back to the GP who referred me for a upper GI/bowel xray which came back likely for Crohn's in April, referred back to the GI for a full-on colonoscopy at end of May which confirmed Crohn's diagnosis.

Now I'm on the lovely prednisone attack, and I go back to see my GI to have conversations about the future next week. I'm actually surprised doctors (my GP especially, he's always had a sense of humour with me because my health has sucked since he took over) took me seriously because I was fully prepared for them not to. Not sure how young you are, but I've been 24/25 through this ordeal and aside from the ER docs who were convinced it was just random diarrhea with crazy blood, my doctors have been pretty good about getting to the bottom of things. :(
Click to expand...

Wow, sounds like it was quite a hassle to get things diagnosed, but it certainly seems like the doctors all took care of you and took you seriously. Tbh my first GP surgery I was with for 8 months or so and they didn't take me at all seriously or listen to me, I moved a couple of months ago and am since seeing a GP who is helping me more but it's still taking its time. He's old fashioned in his ways so he's doing things the odd way round but I guess I am grateful he's helping for what I got before was a joke.

I'm 27, btw, not much older than you. My brother was diagnosed with UC around 26/27 too, he is now 29.
 

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