Diagnosed Today

[Lorella]

Hey guys,

So not really sure where to start :/ Back in March I was hospitalised out of the blue with horrendous D&V and terrible cramps. They performed ultrasounds & bloods, gave me 4 IV bags of antibiotics, even contemplated taking my gall bladder out, after 3 days I went home with no answer as to what had happened.

Things never really picked up from here. Whenever I ate I'd be in the loo, I was forever seeing undigested food coming through, things like sweetcorn, mushrooms, raisins etc literally within the hour they'd be out of me. I started having accidents as well where I couldn't control my bowel so I cracked and went back to my GP who sent me for an Endoscopy. His thought was Ceoliac.

Endo came and went and nothing happened from it, no Ceoliac so I was given diagnosis of IBS. Now to me, what I was dealing with daily, was NOT IBS. I pretty much stopped eating as I was scared of food and what it would do to me, I slept most of the day and my joints cracked whenever I moved and hurt.

So I went back to the GP and demanded more which got me a referral to a GI who wanted a stool sample and said it would come back without inflammatory markers.... my delight when it didn't. So I was sent for an MRI & Colonoscopy which I had today.

The prep is horrendous for this, maybe 30 times I went to the loo in 24 hours and I was in so much pain at one point I was considering going to A&E.

But the Colonoscopy went well and was a breeze really despite my anxiety. And boom there was all the evidence they wanted to diagnose Crohn's. I am happy to have an answer, for months people have been pushing me around saying I had IBS, including family members and friends, saying that maybe this was partly psychological. If it wasn't for my long term boyfriend of 4 years keeping me sane I'm not sure what I'd have done.

However the thing that worries me now is the options the GI gave me after which were surgery or medication which may include pred which I've been on many many many times for asthma and really dislike. I will see my GI in the new year and discuss things properly but it's kind of a shock now to think I will have this forever, I'm currently 21 years old and wondering what a life with Crohn's will be like :/

Sorry for rambling, there is lots of relief in this post :soledance:

 

[suschex]

Welcome! I am so glad you were finally able to get the correct dx! You will find so much great info on this forum as well as many great people! Did they put you on any meds? Are they just leaving you to wait until the new year for any sort of treatment? Although pred. is not fun (I am currently tapering off of 40mg) it does the trick for a lot of people to get them into remission.

Glad you have the relief of a diagnosis!

 

[25times]

Welcome to the club!
It can take forever to get a diagnosis of crohns. I think most of us has had the ibs ******** excuse given to us. I'm 21 too, and although it has been hard, I'm doing much better now and hopefully you will too. It might take a while to get into remission, and you may never be the same, but things will get better. Pred really helped me when I went on it, but make sure they wean you off sooner than later. You could also try entocort, which is also a steroid but has less side effects. Alot of people have had success with biologics, like remicade and humira. They're expensive, but they can be a godsend. Make sure you read up on crohns, as there are alot of extraintestinal issues that can manifest. Like eye inflammation, skin and hair problems, perianal issues, ect.
Good luck and congratulations on the diagnosis!

 

[Crohn's 35]

:welcome: Lorella. I know you are scared and upset. YOU have every reason to be. At least you know what you are dealing with. Took me a full year of tests, it wasnt fun.

Prednisone is best to avoid as much as possible, there other meds and now the best is to hit it hard to get it under control, and then be on a maintainence drug.

There are many here to help you so dont hesitate to ask us questions. Hang in there sweetie, it can be treated.

 

[Jessi]

Hi Lorella and welcome to the forum.
You found a great place to join.
I find so many answers here, as well as friends and support.
I know you will too. :hug:
Make sure to look around and really get to know it.
There is so much valuable information here.

 

[crazycanuck]

Welcome to the forums and I'm sorry but happy for your diagnoses

Now you get the chance to get started on feeling better finally and get on with life again. Be sure to weigh all your options carefully and make sure you ask a ton of questions. Remember doctors are there to help you and you do not have to accept everything they tell you as what you should do or what is right....well look at what you were first diagnosed with.

As Pen said take a look at other options outside of Prednisone as well. I've told my doctor unless I'm literally out of all other options I will not take that drug. I had Budesonide which as I understand is a much more mild steroid to help get things under control quickly and then to maintain.

Do lots of research before your next appointment and I'd advise having at least a basic understanding of the major drugs out there, what all the surgery terms mean, and literally everything else you can think of. I'd keep a piece of paper with all your questions so you can keep track and that way you won't be kicking yourself on the way out because you forgot to ask whatever.

 

[Lorella]

Thanks all for your lovely replies

I've not been put on anything but the GI said it will be very early into Jan I will see him to discuss treatment plans. He did mention another drug beginning with "A" but I can't remember what it was called off the top of my head.

Thanks again for the warm welcome and advice, nice to know there are people here who are going through or have been through the same thing. :cookie:

 

[Angrybird]

Hi Lorella and :welcome: It is always a relief when you have a name for what is causing you so much grief. The med your doc may have been talkng about could be Azathioprine, out of all the meds I have been on I got on with this for the longest. When I got diagnosed I was nearly 17 and self concious about my body, I thought it figured that I would get an illness involving me arse and requiring that people poke it on occasion I defintely gained a sense of humour about crohns - it was either that or end up in the loony bin! I hope things go well with the next appt and let us know how you get on.