• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Just been diagnosed little freaked out

Hi,

So went for Colonoscopy, Gastroscopy and CT Scan, doctor reckons that it's quite likely I have crohn's although he is not 100% as the biopsies weren't completely consistent, apparently there is something indians and pakistanis get that I'm unlikely to have that woudl present the same.
So long story short he thinks I have crohns. I was expecting this, he warned me from the outset, but I'm kind of freaked out, he told me over the phone and I couldnt' ask any questions cause he kept saying it would be better to discuss in person.
Scared and really confused. What does this mean for my life, at the moment I'm pretty much asymtomatic, apart from some pain when I use the bathroom possible fistula or something. Although it was every day diarrhea for a while.
I kind of need someone to tell me what's going to happen or what might happen. I keep reading about really serious cases of crohn's and then turning white at the thought of it.
Maybe I have a mild version? Maybe this is going to be ok, or am I deluding myself?
Also he is going to talk about treatment, is there medication I should prefer? I've heard some of them are really heavy.
Would really appreciate someone giving me advice on this. :(
 
Hi EvaKnievel

First piece of advice, don't jump your motorcycle over any buses. :D

Second, don't panic. If you have Crohn's it is a chronic condition, but it just becomes a question of managing it. There are some pretty effective drugs out there now. And you might have a pretty mild case. You can have a very normal life even with Crohn's.

And there are a lot of fellow travelers here, happy to help you out.
 

valleysangel92

Moderator
Staff member
Hi there

Don't panic. There are lots of people with crohns who lead near enough normal lives and almost forget they have it.

I won't pretend that there isn't a chance you will get worse. Crohns is an unpredictable condition and no one can say for sure what will happen as it's a very individual condition. However it's completely possible that this will be as bad as it gets for you in terms of symptoms.

If you have a fistula you don't really have a 'mild case ' as a fistula is a sign of aggressive disease, but it can get better. The important thing is to work out a treatment plan.

I know some of the medications seem scary, but honestly the side effects are only a possibility and you will be monitored carefully. Don't get caught up on the ifs and maybes. Crohns isn't something you want to leave to its own devices, it can get nasty without proper treatment.

Go and see what your doctor has to say, load yourself with information from the forum and from nacc.org.uk (or the American equivalent) and make sure you ask your doctor any questions you have
 
Thanks for replying :)

I'm probably wrong about the fistula, someone just mentioned that could be the cause of BM pain. I do know I have ulcers though from the conoloscopy biopsy.

I guess what really worries me at the moment is the cure rather than the disease. I mean a lot of the drugs I've seen for treatment are really heavy duty, some of them are used for treating cancer and it seems like they are prescribed pretty often for crohn's even if it is pretty mild.

Then there are surgeries which half of people end up having.

Anyone able to fill me in on what the standard paths for treatment are at the early stage? What do i have to look forward to/dread?
 

valleysangel92

Moderator
Staff member
You could be getting bm pain purely because you have inflammation there, or you could have small tears called fissures which can occur.

There isn't a cure for crohns. The treatments aim to reduce flair ups and to try and prevent serious long term damage. I know the meds seem heavy duty but honestly they usually aren't as bad as they seem. Remember that what you find on Google is usually inaccurate and disproportionate. People will write more about bad experiences than good because the people who have bad ones want advice and encouragement.

If you are started on one of the stronger medications then you will be closely monitored to make sure they are not having adverse effects. The problem is that if you leave crohns disease untreated or don't treat it aggressively enough it can cause very serious complications. Very often the symptoms don't reflect the severity of the internal damage and so aren't a good indication of the treatment level needed for a lot of us.

The effects of the medications are only a maybe. They are not a definite. But if your crohns is not treated correctly it will get worse and potentially become very serious. Prevention is better.

Treatment is a very individual thing. Doctors all have very different approaches and it can depend upon the severity of the inflammation. It's important to remember that while your symptoms may be mild the inflammation could be more severe, so your condition will be categorised on damage as well as symptom level.

A common course is to start with steroids and maybe an anti-inflammatory like pentasa which works on the surface of the intestinal lining. This class of drug usually has few side effects but it's often not enough to keep crohns under control. The next step might be immunosuppressants, which can have more side effects but are safer long term than recurrent courses of steroids (which are only suitable in short doses). If a patient does not respond to these then they may progress to a biologic. These medications target a specific part of the immune system in the hope of stopping the abnormal immune response.

As I said though, different doctors have different approaches and each case is different. The best thing to do is to talk to your own doctor and see what they think is the best course of action for you. Express your concerns and ask them any questions you have, but remember that you do need adequate treatment.
 

valleysangel92

Moderator
Staff member
We've all been where you are now, we all know how scary it is and how daunting things seem. It's hard not to get caught on all the 'what ifs ' but try not to worry. Stress and crohns aren't the best of friends. The medication seems scary I know, but if they weren't safe we wouldn't be allowed to take them. Every medication has * potential * side effects, even paracetamol (telynol) , if you focused on the side effects you'd never take anything. You will be well monitored and if anything starts to be a problem they will act quickly to counteract it.
 
Top