Newly diagnosed, and a wee bit lost:/

Hi my name is Bryan,
I'm quite recently diagnosed and know that forums ect are a great place for help and info so figured I should join up, maybe learn a little!

I was diagnosed after having pains, bleeding cramps and lots of toilet visits. I was put in fair fast for a colonoscopy and diagnosed there & then with Crohn's, which has gotten steadily worse

I was in hospital for a fortnight got out just last week, and seen there just how bad it can get, I was admitted with severe pains all over which we think was thanks to azathrioprine sickness vomiting pains all over, dizziness - anyone else with these symptoms??

They first tried me on pantasa which failed horribly I am now on predisilone, mecaptapurine, cyclazine and tramadol

The belief at the moment is that the disease is active, and is present in the large & small intestine and spreading

I am finding myself shocked at how fast it has gotten worse - this time last year I was fine!!

But anyway that's my story so hi not sure what more. Can say other than has anyone else has similar escalation?

Thanks
Bryan

Hi Bryan. I like yourself am newly diagnosed and struggling with things a bit. This forum has been an amazing source of support for me. Every time something worries me or I'm curious, I will always find the answer here. Everyone is so lovely and helpful and it has truly been a lifeline for me. I'm sorry to hear you've been so poorly these last few weeks. I hope you start feeling better soon. Just wanted to say hello and welcome you Sarah

Hello Bryan,

Welcome to the forum

The symptoms you describe are sadly very common with crohns disease, there will be many people here who can relate to them.

Pentasa is one of the mildest medications used for crohns disease and it's actually quite common for it not to be enough to control the condition. I'm currently taking it myself and I am slowly getting worse as I lower my steroids, but I'm on the waiting list for a colonoscopy and my consultant is reluctant to use the harsher drugs until I've got that done.

Unfortunately crohns is a sneaky illness. There aren't that many nerves in the digestive tract, so by the time we feel pain the condition has often progressed quite a lot. It's pretty common to go from fine to this in next to no time. That's why it's really important that you make sure you keep yourself monitored now, when you start feeling better it might be tempting to not go to the doctors as often or maybe even skip meds, but as youve unfortunately discovered, this illness doesn't give warnings, it will pounce when you least expect it so it's best to be one step ahead.

That being said, there's no reason that you won't be able to go back to doing a lot of what you did before. You might find that your treatment takes a few months to fully work, but when you have found the right medications for you and the right doses of those medications you should feel a lot better. You will need to be sensible with your diet and lifestyle, but you can have a full and happy life.

If you have any questions then please feel free to ask us, there isn't much we haven't seen or heard so don't be embarrassed. You didn't ask for this condition so you have no reason to be ashamed or anything like that. If you ever just need a rant then that's totally fine too, we all understand what living with this condition is like and we will always do everything we can to support you.

Hi Bryan and welcome.

I don't have anything to add. Sending you my support. Hope things turn quickly for you.

Hi Brian,

I'm not sure why they put you on Pentasa if the Azathioprine didn't work, would seem like a step backwards really. Pentasa is used mainly for maintaining remission and it sounds like you haven't really achieved that yet. However they did try me on it when it was clear I was really unwell.

Is this NHS or private healthcare? And may I check how old you are? I only ask as NICE have quite a difference in recommendations for different age groups. For example, if you are under-25 they are more likely to try and avoid surgery and minimise the use of steroids. Whereas if you are over-50 and you don't respond to steroids, pentasa, azathioprine, liquid diet or similar, you can pretty much guarantee they'll at least take a slice out of your bowel.

If you are a young person and you do not respond, chances are they will eventually put you on Infliximab before trying surgery.

It sounds like you have been fortunate in getting a diagnosis early, mine took a couple of years and then a further year of different treatments before remission. Been pretty good (it's all relative) for well over a year.

In contrast, my brother had one severe episode, spent two weeks in hospital followed by a course of steroids. He has been on Pentasa for 10-years and not had any problems since.

As far as Azathioprine goes, I have been on it for about 18-months in combination with Infliximab and I have suffered serious fatigue, dizziness and headaches ever since. As it was the last resort before surgery - and worked like a miracle - I am willing to put up with it for now!

I hope this information helps you Bryan, any questions just ask.

Queen Crohn's

Thanks for the welcome

Sorry pantasa was the first thing they tried, failed horribly, then azithrioprine, which made me really unwell now starting a course of mecaptapurine, on the NHS AN 24 yo
Going back to ninewells on Thursday to see how I'm responding :/ bit also on predisilone, tramadol and cyclazine

Hopefully that will help - don't worry, it may take a while but there will be a treatment that works for you. Good luck and let us all know how you get on with mercaptopurine

QueenCrohns