Noone takes me seriously

[elz100]

Hi
I was diagnosed uc in 2010 and later they said it was probably crohns.
I had a flare up, usual signs, in September just took steroids. Raised inflamm markers. Now i keep getting erythema nodosum on my legs and my joints are killing me. Hot and cold and clammy. Havent really got diarrhoea but feel nauaeous and abdo pain, which happens. Saw gastro, showed them my blood results and photos and she said i hadnt had a flare up it was IBS! Refused to start me on any medication, and said follow the Fodmap diet! Dont know what to do.

Also has anyone lost weight without having diarrhoea? I think ive lost some weight even though my bowels arent horrendous. Weird

 

[Trysha]

I think you really need a second opinion especially with the symptoms you are describing.
The erythema and joint pain are cause for concern.
Don’t continue to suffer like this when you are entitled to second and even third opinions.
Be careful in your choice and ask fellow sufferers for promising referrals if you can.
Feel better soon
Hugs
Trysha

 

[Mountaineer01]

See a different doctor. Sounds like more than just the standard IBS.

 

[elz100]

thanks, I dont know anyone else round here with IBD, and have seen numerous gastroenterologists throughout the years, although true I have only seen this one since Ive had all of these symptoms.

This was a top London hospital (UK), so really no clue what to do/where to go. completely depressed and fed up of being ill, and them just fobbing me off and doing nothing. refusing to start me on meds when I should be on meds for IBD anyway regardless!

 

[Trysha]

Have you tried St Marks Hospital.....they specialis in GI problems.....or used to..
Worth a try.
There’s more than one top hospital in London....years ago there were six that were the absolute tops..
Don’t know what it’s like now.
Feel better soon

 

[Merv S]

Hi ElZ,
Trysha has given you some sound advice about seeking a second opinion.Not all gastroenterologists are the same. At times there is little distinction between CD and IBS regarding both the symptoms and location of the affected areas in the GIT. Some GI's are brilliant , but to others it is just a job!

After close to a decade, my CD diagnosis was not confirmed, simply because the histopathology results from numerous biopsies were regarded as being 'atypical'. Nonetheless, my then specialist continued to treat my problems as if it were the real deal. None of the medications did much more that to make me feel even more miserable.

Even though multiple colonoscopies were unable to reach into the upper ileum because of strictures, the whole exercise became pointless. Ultimately, I requested a surgical cross referral, Within a matter of weeks I had an appointment and a subsequent resection of 32 cm of the ileum. Surprise , surprise, the post operative results came back confirming active Crohn's.

This this is what one is up against and you have my sincere sympathies. This may sound odd, but for your sake I so hope that it not Crohn's. Has anyone suggested that the symptoms that you experience have any possible relationship to appendicitis or cholecystitis?

Just remember with Medicos they are no closer to the Almighty that you are. What I do, although my present doctor iis great, is to arm yourself with a list of questions prior to an appointment. Also make notes of what and when you experience pain etc. Do NOT take no for answer. You have a right to know what is going on with your body and general health. Never forget you are paying for their new Mercedes!
Cheers,
Merv

 

[Bufford]

You have got a lot of good advice. I may add, if you don't like your current GI then its time to find another one. They are only people, and make the same mistakes as anybody else. I have 'fired' a few doctors over my lifetime and have found some very good ones, but it takes some time and legwork.

I like to lay all my cards on the table so to speak when I see a doctor to provide them all the information possible to help them form a consensus of my health conditions. The more information conveyed to the doctor the better.