'Indeterminate' inflammatory bowel disease!

[NatashaChampion]

Hi, I have just been told that i have got indeterminate inflammatory bowel disease and Im so confused!
I have no idea what this really means even after seeing the consultant the other day!

I just don't get it! And they have said that they don't even want to do any more tests!

If anyone knows anything about this I would be so grateful if you could give me some advice because Im starting to stress!

Many thanks x

 

[SarahBear]

It means you have inflammatory bowel disease for sure, but they're not able to determine if it's Crohn's or ulcerative colitis. Have you had a lot of testing done recently? While it is important to determine which form of IBD you have, they may have a reason for not wanting to test anymore. Did you ask them what their logic behind that decision was? My guess is that, if you've had a colonoscopy done and biopsies taken recently, and the results were still indeterminate, they're likely seeing no point in immediately repeating the test. Giving it some time may allow for changes that would solidify a definite diagnosis for you.

Have they started you on a treatment plan? Treatment for Crohn's and UC is pretty similar, so if your symptoms are severe right now, they might just be worried about healing you up more than getting you a more specific diagnosis.

Do you have any more appointments scheduled with your doctor? I suggest you write down all of your questions and take it to your next appointment. Don't leave until you're satisfied with their answers, and feel as if you understand your situation.

:hug:

 

[NatashaChampion]

Hi, if they cant determine which one it is does that mean there are signs of both or not enough signs of both?

The reason i mention not doing any more tests is that they have only done a flex sig of which they didnt get all the way, so they have got no idea what my large intestine looks like at all! So how would they know if i have got signs of ulcerative colitis or not:/? To be honest i dont really want to go for a colonoscopy because the last one was bad enough, i just dont see how they can rule it all out without knowing?

I was started on all the normal medication like steroids and stuff a month a go on the same day as the flex sig as he was 99% sure it was Crohn's.

Do not have an appointment with a consultant now for two months but im not really fused because he didnt help me, so im going to book an appointment with my gp so see if she can explain things more clearly.

I even tried to ask him about diets and be didnt have a clue! Just said dont eat fibre!

Just feel so unsatisfied with the appointment i had but he was so irritating and unhelpful there was no point me staying to try and understand.

Sorry for the rant x thankyou for the reply x

 

[monkey]

They look at lots of factors to determine it... Location is important as UC is just colon but crohns can be anywhere in GI tract. A flex sig doesn't look all the way in so it'd be hard to tell... They take biopsies and the tissue samples tell a story too! For years i was 'indeterminate' because the samples said crohns but i only have colon involvement so presents more like uc... I wouldn't worry about being 'indeterminate', the tests will one day give a firm diagnosis. In the meantime, you being better is important! Try not to stress over it, take your meds and eat well... You will learn the foods to avoid!!
The forum is full of wise people if you have questions too
Sending hugs, hope you feel better soon!!
xxx

 

[NatashaChampion]

That makes slightly more sense than what the consultant was saying. I just dont like not know what is wrong with me and being told Indeterminate was not what I really wanted to hear:/
Have made an appointment with the GP now so hopefully she will be able to answer some of my questions
Thanks for the support x

 

[mrjohns2]

I would recommend going through with another colonoscopy. What were your issues last time?

 

[NatashaChampion]

Well I went along to the consultants appointment thinking I would leave with a date for a full colonoscopy but he doesn't want to do one because he said he wouldn't find anything different?!
Seems strange to me.

 

[Kev]

Hi there

I was in the same boat. In my case, turns out I had both. (some 'experts' said it wasn't possible to have both... there are about a handful of us on here who know otherwise).

It becomes essential to know whether Crohns or Ulcerative IF they advise surgery. If you have UC, and they remove your colon, your UC is gone forever. If it is Crohns Colitis, and they do the same, then there is a significant risk it will return as Crohns Disease.

I've posted photos of my colon... (not for the squeamish)... the big old nasty scar tissue that shows up... that is from my Crohns... the (now) healthy pink areas... that is where the Ulcerative colitis once was (by happy coincidence... the presence of Ulcerative colitis kept my outbreaks of Crohns minimized... it really was a blessing in disguise, you see?).

So, typically (and I'm no expert)... Ulcerative colitis spreads out uniformly, covers lots of area, and can result in a lot of bleeding... but doesn't go deep into the tissue of the colon.
Crohns breaks out in spots... but it can go deep into tissue (fistulas, fissures, resulting in lasting scars)... AND, if you try removing it by cutting it out surgically, it will usually just come back elsewhere. That is my layman interpretation of it... zero medical training, OK?

 

[NatashaChampion]

Were they able to tell that you had both of them from one biopsy? All I have had is one flex sig of which they didnt manage to even get all the way due to the amount of inflammation meaning it was very painful for me.

Nothing has been said about surgery at all to me! Not even a mention. Do you think that surgery would be necessary at such as early stage?

I understand you are not medically trained but thanks for all the info, been getting more help on here than any doctors at the moment!