Just diagnosed, advice needed please!

Okeydokey,
just back from hospital seeing IBD nurse. First of all, she was excellent. Very professional and informative.
I've come away a bit more unsure in some respects now though. To summarise what I've been told:

1. I have 'indeterminate' IBD. She says the pathology couldn't say for sure if it was UC or Crohn's, but it looks to the Consultant like UC.

2. I will only know for certain what I have if they take other biopsies sometime in the future, which may show which type.

3. My notes have been lost.

4. I wasn't referred at all, so no appointment with the consultant had ever been made, so I'll have to wait from the beginning again.

5. My dosage for Predisnolone tapering down is wrong (should be 5mg rather than 10mg at a time). She reckoned this was maybe why I had started bleeding so much again.
(When I was in the hospital, because of where my bed was I heard a lot of the conversations with the medical staff. I can clearly remember a very young Dr. saying to a nurse, "Can you remember how much the decrease/taper in dosage for Prednisolone is? I can never remember if it's 10mg or 5mg. Ach, I'll just go for 10mg, I'm sure it will be fine"). The IBD nurse was not happy about that! :D

6. I've to go for blood tests at my Doc's (FBC, U+E's, LFT's, CRP, ESR) god knows what all that is, but that was after I mentioned the yellow skin.


The IBD nurse was very apologetic about it all, saying she felt the Western was a centre of excellence for IBD. I could see she meant it. It's not her fault, quite the opposite, she's doing her best to help me, but it is rather frustrating the way this has all happened!
Anyway, I'm in the system now so no point moaning.

The big shock for me was I went in wanting to know what type of UC I had, i.e. is it pancolitis, and the associated increase in cancer.
Now I don't know for sure what I have, with no way of knowing if I ever will, or when.
It seems, from what I've read, the treatment and outlook/diet, etc is quite different between the two diseases.
Hmm, lots of twists and turns!
Thanks for bearing with me on all this!

FBC...Full Blood Count ... Complete Blood Count (CBC)

http://labtestsonline.org/understanding/analytes/cbc/glance.html

U+E's....Urea (BUN) and Electrolytes

http://labtestsonline.org/understanding/analytes/bun/glance.html

http://labtestsonline.org/understanding/analytes/electrolytes/glance.html

LFT's....Liver Function Tests...Liver Panel

http://labtestsonline.org/understanding/analytes/liver_panel/glance.html

CRP...C-Reactive Protein

http://labtestsonline.org/understanding/analytes/crp/glance.html

ESR....Elyctrocyte Sedimentation Rate

http://labtestsonline.org/understanding/analytes/esr/glance.html

Hope you go soon for the tests..Let us know the results.

quincy

Hi Cameron,

Sorry to hear all the hassles you're going through to get a diagnosis. I know how frustrating that can be, on top of dealing with the IBD symptoms themselves. I can't believe the doctor said that about the pred tapering! How unresponsible and unprofessional! I would be pretty ticked off if that happened to me.

As far as determining what type of UC you have, I still don't know what type I have. At first, I was very concerned about it as well, just like you. But, when I had my first c-scope (in March), they couldn't go all the way through because my intestines were so inflamed and they didn't want to risk perforating my bowel. I know I had inflammation at least all the way up my left side, and I'm guessing I probably had inflammation throughout (pancolitis) but I'll never know for sure. My second c-scope (in August) showed mild inflammation only in the rectum. I think the amount of inflammation can change with each flare, so, i think you could have, say, pancolitis now, and later, only have left-sided inflammation. So, I don't know that the label really makes that much difference.

Good luck with everything and I hope you continue to get well soon. Oh - and welcome to the forum. I've found this to be a great, caring, informative place.