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NatashaChampion

NatashaChampion

Joined
Feb 9, 2014
Messages
85
I was diagnosed with Indeterminate colitis a few weeks ago which I still can't get my head round, makes no sense to me.

I'm starting to feel very alone with this disease even with all the support I am getting. My parents, family, boyfriend and friends are all being so good but I still feel very alone with know one who truly understands.

I have been to see three GP's now and a consultant and to every one I have had to explain my story over and over again! Theres no continuity in the whole process which is making it harder for me to get to grips with the whole thing.

Originally, the doctors were like we will being seeing you a lot and making sure your okay but it just feels like they have sent me away with numerous drugs and expect me to understand whats going on. The GP I saw the other day actually asked why I was on Pred!! I felt like shouting at her saying well if you don't know then I have got no hope in hell!!

I just don't know what to do with myself at the moment, I pretty much cry every night from just feeling like crap and in pain. I have got no motivation to do anything and it really starting to effect me.

I am down to 20mg of pred tomorrow which is a great achievement but I'm starting to wonder what happens after! none of the doctors have actually discussed with me what the process is after this or how I am meant to feel! I don't even know what I'm supposed to be feeling, I can't tell if I'm getting better or not to be honest!

I also don't know what to put on forums, such as if you wanted to do fund raising they ask do you have Crohns or Ulcerative colitis? I haven't got a clue as I have neither!

If anyone knows anything about indeterminate or any websites or forums that I can join please let me know.

Sorry for the long message! I just need to get things off my chest without making everyone in my house feel sorry for me!

Many thanks xx
 
Hiya NatashaChampion

As far as I know indeterminate colitis is IBD, inflammatory bowel disease, and shows characteristics of both ulcerative colitis and Crohn's, someone correct me if I'm wrong!
How did you get this diagnosis?
We're all here for you, you're not alone with this, any questions just shout, in the meantime have a mooch around this forum, the best on the web, and educate yourself with knowledge of IBD. Keep a food diary, document everything, symptoms, times etc. Arm yourself with this ammo and talk to the gastro, insist and persist, as a UK citizen you have a right to your care in the NHS, but you have to be assertive, you are your own health advocate.
Pred is a short term solution, but it's masking what's going on. Start by familiarising yourself with other treatments, read our treatment forum.
Good luck xxx
 
As Astra has already explained indeterminate colitis is inflammatory bowel disease (IBD)
which shows the characteristics of both ulcerative colitis and crohn's.
She has also given you some excellent advice.
In time one or the other will become apparent and you should receive careful and caring observation..
The steroids you are taking could be contributing to your depression.
Did you have upper and lower endoscopies for this investigation.
Have you had lots of blood tests.
It is usual in these circumstances for a patient to be seen at regular intervals by the GI.
When will you see the GI again?
If you are not happy with your treatment there is an excellent hospital in London, St Marks Hospital ,that specialises in IBD disorders.
Feel better soon
Hugs and best wishes
Trysha
 
My daughter first started out with the indeterminate colitis diagnosis. I read everything on crohns & UC. It took about 6 months to finally know what we were dealing with and get her diagnosis of Crohns. We hated not knowing! Now that we know there hasn't been really any difference except for the relief of uncertainty. They are treated in many similar ways. I know this is hard to wrap your head around. We told people she had IBD and than explained. Most people have no clue anyways and need explanation no matter what it is. Stay strong! It will get better.
 
Thanks for all the replies.
Starting from the top, Astra thanks for the support means a lot, i have only had a flex sig where they took biopsies and they have said that they don't want to do any more tests:/ seems odd to me as even though as Supportivemum says they are both treated relatively the same but the idea of not knowing is really difficult to come to terms with. I'm definitely going to start keeping a food diary especially now as I am tapering off the pred.

Trysha as I said above I have only had a flex sig and they don't want to do any more tests to even attempt to decide if it CD or UC, i have also only had one blood test since being diagnosed. My next GI appointment is on the 23rd April which is when i should be supposedly off of the pred by then. Just feel so unsatisfied with the GP's and GI's especially when it comes to slight depression, each one of them have just said to keep talking to people, which does help but not always enough.

and supportivemum, did they do other tests in order to determine which one your daughter had? I understand that they are both treated the same I just hate the word indeterminate, just feels like the doctors don't really know whats wrong with me so they just put you in this band for both!

One last question, I have just tapered down to 20mg today and I have just been to the loo and there was a small amount of blood in my stools! I don't really know what to do, stay at 20mg for a few days and see what happens or go back to 25mg for another week?
I don't really want to go back up again:(

anyway thank you all xxxx
 
To answer your last queastion, that happened to me as well, it seemed to slow down / stop before I tapered again (then it would start again). Do you normally have blood?

Afterwards it did stop. I would keep your eye on it and if it gets worse, or if it bleeds for more than a week or so I would have a word with your GI.

Just to let you know I didn't go back on Pred due to the bleeding, but they started me on Infliximab instead as aza didnt seem to be working
 
Well I had bleeding for about 7 months prior to being diagnosed and going on the pred.
I was on 40mg originally for a month and then been doing a taper of 5mg per week. When i went to 30mg the bleeding came back so went back to 35mg for another week.
I kinda dont want to go back up again though, i hate the side effects that i am getting from being on this drug:/
I think i will stay at 20mg for a couple more days then call the GI if nothing changes.
And do you think that if the bleeding continues that they might start me on something else?
 
To be honest, even my GPs are annoying me! I had a really nice doctor who was lovely and i really felt like i could talk to her, however just as i was diagnosed she went on maternity leave:/ since then i have seen three others who i just cant get on with!

Im currently on pred, asacol, omeprazole, iron tablets and calcium tablets.
 
Apart from Asacol I would say that the rest of them will only help with the symptoms of crohns/UC and not really control it.

My GI always said that Pred was a last go to medicine due to the side effects and only used short term to control the disease whilst they either try new medicine, or see if the stuff I was on already works.

Do you see an IBD specialist or is it all done through your GP?
 
In my case its seemed like pred was there first point of call to apparently control the flare up and hopefully into remission?!! They havent even mentioned any other drugs but maybe they will when i see the consultant on the 23rd of April (which is when i should be finishing the pred if the taper continues okay)!

I just have an appointment with the gastroenterologist? I dont know if they are a ibd specialist?
 
Okies... Theres a lot going on for you here.
First up, please try to stop stressing!! Stress and this disease are a really poor combination!
Secondly, GPs are not great, unfortunately, they are really only able to send you on to other people or give you fairly low level drugs so you will find you get little joy from them and tbh, they probably know less about your condition than you do, so thats not really anything new!
Pred is a horrid ugly drug, the side effects are terrible, remember it is an artificial hormone so basically screws any and every hormone system in your body, so it's like the very worst of pms for weeks on end... It's ok to feel lonely and worried and tired and emotional, it's the nature of the beast. However, most people on this forum have been on it at some point, and for most people it's a nice quick-ish fix, to get you feeling better again....
Long term, it may settle and you'll be fine for years! That happened to me, a few months of treatment then had like 7 years of little to no symptoms with NO medications... So don't despair!! Your gastro doc will give you meds of some sort as a maintenance if necessary but they probably just wanna see how you get on with the steroids first.
Try not to panic about the diagnosis, i'm still indeterminate... I mostly just tell people I have crohns, cos people have heard of it, plus its less of a mouthful... It doesn't really matter what you have, just that you get treated right!
I would recommend seeing if you have an IBD nurse at your clinic, they are amazing, and pretty good at talking you off the ledge - I've had many a day when I've just had enough and need a rant... They're better than the doc for listening!!
Okies, that was pretty long.... Anything else, PM me for sure...
Take care!
 
Hi monkey, yes i really do need to stop stressing, its probably my biggest weakness!

Glad to hear that you have done so well for so long, at the moment its proving hard to see my self getting better but will hopefully get there eventually.

I think i will just tell people i have Crohn's especially since they dont want to do any more tests anyway so im not going to get an answer anytime soon!

And okay i will look in to that, is an IBD nurse likely to be at my local doctors or something at the hospital?

And thankyou x
 
The IBD nurse will belong to your gastro doctor at the hospital. You should just be able to phone the secretary and ask, the nurse can call you back...
You're gonna be fine, it is just a lot to get used to in the beginning :) like a whole new world... But it gets easier :)
Take care!
 
It would be worth keeping a log of your symptoms, how many times you go to the toilet, General well being as well as any questions you have. That way when you see the GI you will be prepared and you will find you will get more out of the meeting. If you are into phone apps gimonitor is pretty good
 
D got her indeterminate diagnosis after her colonoscopy/ endoscopy. The scopes showed crohns, the pathology showed UC. She was extremely inflamed everywhere which made it hard to determine (she had list 35 lbs, kept no food down, going 30+ times a day). She had an MRE a few months later that saw a better result to determine. I admit it was frustrating not to know what form of IBD it was. Now that we know it hasn't made much difference and she still has had only moderate relief. Diagnosis is only part of the battle. Save your strength for the medication. That has been a bigger issue for us than the diagnosis. I agree with the prednisone only managing symptoms. You need to be on medication that can promote some healing. Prednisone is a quick fix, but not even close to a total fix. Talk to your doctor about other meds like methotrexate, ASA, and others. Biologics may or may not be the way to go (Humira and Remicade). Your doc can give you better ideas. Know we are all here for you. This forum is a great place of knowledge and a real life saver for stress and anxiety!!
 
Thanks supportivemum, i will try to just get on with being indeterminate for now then haha!:) i really need to get my head around all these drugs, when i read about them it all becomes very confusing! Im going to try and talk to an IBD nurse today so they may be able to help! Hopefully:)

Thanks for everything x
 
Natasha,

I have UC. I pretty commonly have a small amount of blood. If that's the only problem I'm having, it isn't a big deal. Its when I have pain, cramps, etc. that I have to worry. You definitely should talk to either a doctor or a nurse about the blood, but if your other problems are getting better, I suspect they will continue to taper you on the pred.

I'm on Asacol too (well, actually I'm on a different brand of it, but same difference). I've had no side effects from it; it is a much nicer drug than prednisone.

As to what to tell people... tell them whatever you are comfortable telling them. ;) I suspect more people have heard of IBD than Crohn's, so that might be easier.

Best of luck
 
Hi Natasha, I'm sorry you are not getting the help you need. :( I have Crohn's disease and was diagnosed by my GI doctor, who my family doctor recommended. I had a colonoscopy and blood test, followed by a capsule endoscopy (swallowing a camera to get pictures of upper intestine in my case). My understanding is that you need at least a colonoscopy so the doctor can see what the inside of your entire large intestine to look for the lesions typical of Crohns, or other intestinal diseases. Also, my GI said that prednisone should only be used in the short term, followed by drugs that can be tolerated longer, such as imuran, or 6MP. Remicade and Humira are the big guns to use if the other meds don't work. My point is, don't bother with the GPs if you can help it, you need a GI doctor who has experience with your type of condition. Since I am in the US, I don't know how you would go about finding a good GI doctor in the UK, maybe some of our British friends on this board can help?
Good Luck.
 

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