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How long did it take to be diagnosed with Crohns?

D

DMac

Location
Hertfordshire, UK
Hi :)

I'm interested in hearing from you about a couple of things. How long did it take to have your Crohns diagnosed? And did you know anything about Crohns, prior to your being diagnosed?

My condition deteriorated very quickly and within the space of a couple of weeks I was displaying all the symptoms. Excessive bleeding, severe stomach cramps, loss of appetite etc... My initial diagnosis was UC and it wasn't until I has undergone two reversals that I was told I had Crohns.

I had no knowledge of the condition prior to becoming ill.

Thanks :)
 
T

Tay

Hi DMac
I started with the shits, belly ache and weight loss aged 13. Sought medical help aged 14 and had all the usual nasty investigations. Couldn't make a firm diagnosis until I was 16. Initially thought it was cealiac disease. Then had another sigmoidoscopy which showed characteristic crohns lesions in colon. Bingo! Never heard of it, that was back in 1975 so not many people had - still plodding on! Best wishes.
 
Devynnsmom

Devynnsmom

I took 6.5 years to have my daughter diagnosed with Crohn's, 2 years later they also diagnosed her with Ulcerative Colitis. Her symptoms started at around 18 mos old and she wasn't diagnosed until she was 8. She had abdominal pain, joint pain, mouth ulcers, bm that would go from diareah to constipation in the same sitting, body rashes, fevers. It was always either *a virus* or *growing pains* or coxsackie virus. I had no knowledge at all about either disease prior to her diagnosis.
 
Terriernut

Terriernut

Moderator
My first bad 'flare' was when I was 33. Of course I'd had lots of the big D long long before that. They 'suspected' crohns, but were very iffy about it.

I wasnt properly diagnosed until almost dead at age 47. After another perforated bowel. Joy.
 
Nyx

Nyx

Moderator
I was diagnosed within six months of my symptoms appearing (at age 36). My first hospital stay and the first of many blood transfusions, blood tests, CT Scans, and colonoscopies. It was very obvious that I had Crohn's. I knew about the disease prior to my diagnosis as a very good friend of mine also has it.
 
2thFairy

2thFairy

I started having symptoms at age 23, but wasn't diagnosed with UC until about 18 years later. Two years after diagnosis, I had my colon yanked.

I had heard a little about Crohn's and UC way back then, but only because I had started researching on my own trying to figure out what was wrong with me. I knew it wasn't just IBS and depression, as I was being told.
 
K

Karen!!

Hi Dmac,
I started having symtoms at the age of 18. It took around half a year to get a diagnosis. That was last year.

I've known about crohn's from a great aunt that has it. (we're not even blood related)
 
Miss Underestimated

Miss Underestimated

I first got sick in 1986, didn't get diagnosed until 2008, when my colon perforated. I spent about 3 years trying to get a diagnosis of something in the late 1980's but when they started in with the psychosomatic carp, I quit going to the doctor, and handled it myself - until the big emergency.

I didn't know the first thing about Crohn's until they told me when I came to in the hospital. I had heard the word, but didn't know anything about it.
 
Matt.B

Matt.B

I was 23 and had stomach pains, diareah which was shortly after Sydney had a water scare with lots of bugs in the tap water which made lots of people sick. My symptoms were similar and thought it could be that so i was treated for it but no change so i went to see another GP who reffered me somewhere else and i gave a few samples with no change or result and i was only getting a lot worse. I went back to my regular GP who instantly sent me to a gastro specialist who diagnosed me with Crohns. It took about 6 months and I'd never heard of it before.
 
K

kristenpaige96

Hello everyone!
This Is Really A GOOD Question:)

It took me 3 months to get diagnosed!! But I went through hell and back so I guess it was easier for me to get diagnosed bc I had 2 surgeries within 3 days.. And while my second surgery my doctor who was operating on me found all this infection fluid in my abdominal cavity and around my liver. It was two fatal infections (CDEFF and Parentenitus) my spelling could be wrong. but yeah I spent a long 4 1/2 months in the Hospital and a whole month in ICU! It sucked
But before I got diagnosed I never heard of it....
 
D

Dawn Gibson

Location
Southampton,
For me, I started getting a stomach ache every night when I went to bed, I was 15. It was a slow onset thing, after about 7 months I sought medical help (I'd started vomiting and had lost weight) and then about 3 months afterwards I was diagnosed.

By Grandmother had had colitis and later Crohn's. I never saw her being very unwell with it so I had no idea what I was in for. Little did I know! I think I'm glad I didn't know at the time, I would have been terrified.
 
FruitLoop

FruitLoop

I was lucky in that i was pregnant so a diagnosis was needed urgently for the sake of the baby.

I had about 3-4 weeks of chronic D and lost about 25 lbs which being pregnant was a big no no.

I was admitted on the Monday, diagnosed on the Thurday after a sigmoidoscopy, dosed up on steroids and flew to Tennerife on the Sunday!

I had never heard of Crohns and thought it was a kind of temporary thing that would just clear up on steroids.

How naive i was!
 
G

gracifer

I was 19, and first had gastritis so for 5 months everyone just thought it was that. After that, the doctor had the audacity it was in my head and i should go home and eat 'proper food'. It wasn't until I started vomiting regulary, had appendix type pain, and one hospital stay that they realised what it was. All in all about 7 months. Those 7 months were the longest of my life though.
 
QuicksWife

QuicksWife

I wasn't feeling well in late 2009. I lost alot of weight, many bowel movement a day and not being able to eat. Doctor sent me for a ct scan and they told me I had crohns. So I found out within a couple of months. In sep of last year I got hospitalized for a assess in my small intestine. I have been doing pretty well since then. I feel my meds don't work. I take them and they make me cramp up and not feel well. I will be going to my GI on the 23rd. We shall see what they say. Also, has anyone ever had problem with mouth sores??

2
 
S

shamrock15

For me, it started when I was about 17. I was in pretty good shape, but started showing "love handles" at my waist. Decided I would try to lose a little weight. Sleep habits before this changed - went to about an extra 3-4 hours daily. Thought my exercise regime was working until I started getting pain after eating. Then came painful bowel movements, bleeding. It went on for a year, until I was diagnosed in my second year university. I nearly quit that year, and it seriously screwed up some of my courses. I remember that first course of prednisone, thinking that it was like a gift form above...
 
queenlizard45uk

queenlizard45uk

Location
Norfolk
It took nearly 2 years for me. I was living at home in Wales, and having loads of tests. I had a colonoscopy and told i had nothing wrong with me. When I moved to Norfolk 6 months later, The doctor reffered me to a specialist, who proformed another colonscopy and discovered i had crohns and was covered in ulcers. No idea how they missed them in the other hospital, and theyre massive and theres loads of them!!


always get a second opinion!!!
 
D

debbie261

When I found out I had Crohn's,about 25 yrs ago,not much was known about it.It took about 2 yrs of testing to find out it was Crohn's.I was even sent to a therapist who told me it was all in my head!When I got the diagnosis I wanted to go back to that therapist and tell her that no my being sick wasn't in my head,it was in my bowels!I had lost about 75 lbs very quickly and had stomach pain so bad I couldn't get out of bed or off the toilet most days.
 
2thFairy

2thFairy

Debbie, I had a similar situation. I even went to a therapist for about 4 years all because one GI said it was depression and I didn't want to work, and every doctor after that dismissed me after seeing that on my chart. When I was finally correctly diagnosed and treated, I wanted so badly to go back to that first doctor and let him know how badly his chart notes affected the next almost 20 years of my life, but he had died. It's probably best that I didn't get my chance.
 
gers1980

gers1980

My first symptoms developed when I was 7, I went in and out hospital for tests for abdominal pains and fevers. The doctors then diagnosed me with celiac disease. Their course of treatment was to put me on a gluten free diet for 6 years and re- evaluate me after this period. I'm sure todays gluten free food is a lot better than it was in the mid 80's, but it was awful!!

After re-evaluation the quacks came to the conclusion that I was symptom free and took me off the gluten free diet. I then had a good period of 4 years of being well, until I developed a abscess under my bum cheek ( which at the time I thought was a football injury), which the cause was traced back to me having something called crohns. After this diagnosis I very quickly went down hill, became very ill until I needed major surgery.

From my first symptoms it took ten years to correctly diagnose crohns. I just which they came to this conclusion earlier as I would've never had to go on rough gluten free diet.
 
annawato

annawato

Moderator
Staff member
Toothy I had the same experience as you. Spent 20 years feeling guilty for feeling sick.
 
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