A year of confusion!

[Kismet]

Hi hope you're having a "good" day

I've had IBD symptoms for about 16 months have had numerous blood and stool tests all of which have showed positive for inflammation and my white blood cell count is higher than normal also.

My GP has referred me to a Gastro specialist but I've only had 1 consultation and that was just to discuss my symptoms and to request a further blood and stool sample that was 2 months ago and I've just had a letter asking for further samples as they didn't test for the right thing (??? Really!)

I've spoken with my GP who has told me it is IBD and not IBS so I'm a little confused as to why the specialist needs more samples if my GP has already diagnosed me.

Getting frustrated with the lack of communication and information from my specialist

Any help and advice would be greatly appreciated

Sorry for rambling!

 

[Hope345]

Welcome to the forum.

As you have already found out, you are your best advocate.
My suggestion would be to call the GI and find out what tests were done and what needs to be done further.

You are obviously in a flare and I cant imagine why they are delaying your treatments. Call your GP also and ask for copies of all tests and start your own folder.

Are they planning a colonoscopy, endoscopy or MRE? Have they started any meds?

I am sorry you are having so many problems. IBD needs to be treated quickly, often with Prednisone to get your symptoms under control and they usually will also add other meds like antibiotics, Asacol and a 6mp. Everyone responds differently to medications so they often start with these meds first to see if it helps.

You will find a lot of information on this site, and lots of support.
Let us know what is going on and if we can help.

 

[Kismet]

Thank you for your response! I will defo ask my gp for copies of any tests done and the results.

My GI mentioned a colonoscopy but wanted to wait for further blood and stool results first though. I wouldn't mind this I he was clear on the reasons for these and what will be achieved by repeating them over and over.

I'm on omeprazole and have been for a few years due to acid but nothing else. I do take painkillers when my stomach cramps but after reading about the adverse affects painkillers can have on your stomach I'm a little unsure if I should be doing this?!

I'm getting a lot of bloating as well ( to the point I look about 8 months pregnant) anything I can take to help with this?

 

[Astra]

Hiya Kismet
and welcome

You could try some digestive enzymes for the bloating, available at any health shop or Boots.
Regarding your diagnosis, I'm afraid the specialist in IBD will have to confirm this, with the best will in the world a GP isn't a specialist, and I for one wouldn't take it (the dx) as Gospel, that's why there are calls for more tests from the gastro.
Sorry to be so blunt, but experience has made me very cynical!
Phone PALS, they can help and advise, good luck xx

 

[mccindy]

My guess would be that although they know it's IBD, they want to confirm whether it's Crohn's or Ulcerative Colitis so they can treat the best way possible. I hope they give you good answers and get you on the path to feeling better soon!

 

[Kismet]

Thank you for your replies

I know they're doing what needs to be done just very frustrating waiting especially when you feel like death warmed up most of the time lol xx