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Awaiting chrons diagnosis - need advice!

awaiting chrons diagnosis - need advice!

Hi there,

I'm not yet diagnosed but with a 5 month history of constant diarrhoea, 5kg weight loss, extreme fatigue, erythema nodosum on my lower legs, borderline anaemia and raised white cell and CRP, scleritis of my left eye, anal skin tag and boils, mucous and blood....I'm thinking it's a strong possibility! Have made it as far as my GP and am waiting for a specialists appt, no medical insurance so no choice but to wait for the public system.

Guess I'm just in limbo waiting for appts and diagnosis etc. I am a nurse and have looked after many, many Chrons patients and am well aware of whats in store, but as my GP pointed out I have only seen the sickest of the sick and that many people live semi normal lives with chron's...so I have a few questions for you seasoned chronies!
-how long did it take to be diagnosed and what were your symptoms? I feel my symptoms are strongly suggestive but even though I'm a nurse I've never been on this side of things and not sure of the process
-how long did you have symptoms for before you knew something was wrong? I had a good 2 1/2 years of extreme bloating and tiredness before the diarrhoea started
-how many of you have other auto-immune disorders? I also have asthma, excema, hayfever, endometriosis and just for good measure alopecia-I'm a baldie!!
-How long after you were diagnosed did you start feeling better? I feel so wiped out all of the time and just want to get some normality back into my life


Thats all I can think of now but I'm sure there'll be more questions! Thanks for listening and I'm looking forward to hearing from you all

Anna:sign0085:
 
Hi and welcome to the forum, am sorry about what yr going through. I started with symptoms at the age of 17 and wasnt diagnosed until the age of 20, I was put on Prednisilone and it helped more or less straight away, it was fantastic, unfortuantly I started with a flare up about a year later, I also have hayfever and asthma in the summer months and had excema as a baby. I hope you get to see someone real soon as you cant go on like this x
 

ameslouise

Moderator
Hi Anna and welcome!

Wow, I do hate to say this, but it sure does sound like Crohn's! As you can read in the undiagnosed club thread, sometimes it takes a long time to get a DX. Scopes, blood tests, etc can all show inconclusive results. I hope this is not the case with you and that you can get a quick DX and get on some meds to help.

I agree that the fatigue is one of the most excrutiating parts of CD. For me, I was first DX with Ulcerative Colitis, and thought I was DONE after I had my colon removed. About six years later, I started having classic Crohn's signals - extreme fatigue, canker sores, sore eyes, joint pain, intermittent fever.

Hang in there, hope your public assistance comes thru quick and you can get on with it!

-Amy
 

xJillx

Your Story Forum Monitor
Hi Anna and welcome! Yup, it does sound like Crohn's disease. I sure hope you can meet with a specialist soon to get to the bottom of it!

-I was diagnosed pretty quickly immediately after a colonoscopy. The only symptom I had at the time was passing mucus. My GI suggested not messing around and doing a colonoscopy; I am glad she did. Inflammation was found in my terminal ileum and rectum. However, numerous tests (bloods, CT scan, lower bowel series, pill cam) after have been normal and now my GI is unsure of the diagnosis. So, it can be take a lot of testing and time to be diagnosed.
-I only had been passing mucus for about 3 or 4 months before the colonoscopy.
-No other auto-immune disease
-Unfortunately, I have developed more symptoms and I am not where I want to be yet. However, I have more good days than bad lately - so I shouldn't complain!

So, from my experience, I strongly suggest doing a colonoscopy and/or endoscopy sooner than later. In my opinion, they provide more telling results than imagining testing. And the sooner you know what's truly going on, the sooner you can start treatment and get well. Good luck!
 
Hi there,

I'm not yet diagnosed but with a 5 month history of constant diarrhoea, 5kg weight loss, extreme fatigue, erythema nodosum on my lower legs, borderline anaemia and raised white cell and CRP, scleritis of my left eye, anal skin tag and boils, mucous and blood....I'm thinking it's a strong possibility! Have made it as far as my GP and am waiting for a specialists appt, no medical insurance so no choice but to wait for the public system.




Thats all I can think of now but I'm sure there'll be more questions! Thanks for listening and I'm looking forward to hearing from you all

Anna:sign0085:
Hi Anna,
Constant 'D',weight loss,awful tiredness,erythema nodosum(back of my legs),
anemic,raised CRP,boils( i had 5 abscess),anal skin tag (i had two fistulas)mucous,blood(rare).
Sorry to tell you these were many of the symptoms i had before i ever got diagnosed.Despite right side hemi & a decade later resction of neo terminal ilieum,Steroids,Azathioprine,6mp,Pentasa most of those symptoms stayed with me, fluctuating from mild/moderate to severe, until i finally found the help i needed, and i gained complete remission from CD.

I hope you don't have to wait too long to find out what is wrong.
Hopefully then you can get yourself in remission.

best Wishes
 
....forgot to mention the sore joints, my fingers give me hell!!

I'm resigned to a diagnosis of chron's, I think one of my biggest fears at the moment is not getting a diagnosis straight away and having to faff about.

One other question I have....last year when I was having severe bloting I had about 3 months where my symptoms seemed to clear and I felt great....looking back at this time the only thing different was that I was taking cod liver oil everyday to try and clear my excema up, when I finished taking them my excema cleared and in hindsight I had a few months of wonderful months of no bloating....anyone else out there tried cod liver oil? Have just started taking a fish oil and evening primrose oil supplement and have to say I am feeling a little better, needed to do something proactive while I wait for my appt!
 
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