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Recent diagnosis (16 year old w UC and Crohn's) + question on MRI scan

Hey there! I'm really new to this, so I guess it would be best to start with an introduction? My name's Jess, and I've recently been diagnosed with both forms of IBD, so I've have Crohn's and also UC, and I'm 16!

I've been reading everyones stories on here, and it really is such a relief to know that a lot of people feel the same way I do.

However, although I've had multiple colonoscopies, and endoscopies, I've never had an MRI scan, so I was just wondering what is it like? And what to expect? Because there is a chance they want to remove part of my colon, as I'm having a very bad flare up at the moment and the steroids and azathioprine aren't working.

Thank you very much!
 
Hi Jess!
Welcome to the forum! Sorry to hear of the trouble you are having getting this flare under control. Have your doctors suggested biologics? It sounds like that might be a useful next step since pred and aza aren't working well enough.

I've had a lot of small bowel MRIs. Mainly it's a little bit boring - you have to lie still for at least half an hour in the scanner, following instructions for breath holds. It's a little bit noisy (various different beepings from the scanner) but you have headphones and a button to press if you need to talk to someone or want someone to come in to see you.

The biggest issue people can have is claustrophobia - but usually only if they have such issues already. It's not a big space inside the scanner but it's not uncomfortable for most and you can close your eyes and have a bit of a rest - other than the noises and breathing instructions!

If you are claustrophobic - or go and find you do have issues - there are open scanners which are like a big doughnut so cause no such problems. For an open scanner you need to get referred to one of the hospitals that have them unless your hospital happens to have one of the few open scanners, so most try the conventional MRI and get referred if they can't manage. But it's good to know there is a way around this issue! My mum had to do this recently ;)

I agree the contrast isn't great to drink - though I believe there are different contrasts so experiences vary, and some people find all of them fine! As always, we're all different! I've always had the slightly gelatinous kind, which I don't love by any means but I have managed. The good thing is the prep is much easier than for a colonoscopy! For me the prep has just been fasting for about 12 hours before the scan and nothing more.

For all my scans they also put a small canula in so they can inject some contrast.

Do your doctors believe that your colon is affected by UC and Crohn's? Or is the Crohn's seen elsewhere in your bowel? I imagine the MRI may also be to check for signs of Crohn's in parts of the bowel not seen by the scopes, but I'm always curious about a double diagnosis like this.

I hope the scan goes well! Please do keep us updated!
 
Oh no, I've never even heard of biologics. Whenever I'm having a very big flare up they just up my dosage of everything that I'm on!

Thank you so much for explaining all about the MRI, I feel a lot better knowing it's nothing too scary- just very loud. Fortunately I'm not claustrophobic, so I think I'll be just fine:)

The Crohn's is in my small intestine, and the patch of inflammation is pretty long, but they want to see just how bad it is right now. And then the colonoscopies showed that I have quite a few ulcers in my large intestine hence the UC. So it's not great, I'm often in a lot of pain. And it's very hard because codeine is the only painkiller that helps, but it sends me to sleep and I have school- so the doctors are trying to completely switch everything off and stop my immune system from attacking!
 
I think that biologics might well be the best way to go for you! Usually people start with infliximab and see how that works but I'm going to call in some extra help for some more opinions on this!

Hopefully once the inflammation is under control you will not need the codeine - I can understand that that must be very hard at school. I found it tricky relying on codeine at uni but at least I could take it for part of the day and work from home a bit.

Also have your doctors ever suggested Exclusive Enteral Nutrition? It's basically having complete nutrition drinks instead of normal food and can be very effective at treating Crohn's inflammation.
 
Sure, of course. They've never suggested it, but if you think it could be a suitable option, then I will definitely run it by them and see what they think.

Yes that's what I was hoping, it's really hard to rely on codeine just to get me through the day. I'm praying that they'll be able to get this under control because right now it's pretty dreadful.

No they haven't yet, but I think it's on the cards as one of the next routes. But like I said, I'll be running all of this by them and see what they say. It's only quite a recent diagnosis after a year of displaying symptoms so they're still trying to find ways to control the flare ups that I've been having.
 

Jennifer

Adminstrator
Staff member
Location
SLO
Hi jesskirkham and welcome to the forum! :D

I would definitely consider biologics before having surgery (unless you are dealing mainly with scar tissue then medication won't help but it can help prevent and control current inflammation). Many often start with either Remicade or Humira but there are others to try as well. There are many different treatments out there. The most common ones are listed as subforums under the Treatment section here if you're interested it discussing any of them: http://www.crohnsforum.com/forumdisplay.php?f=16 If you do have surgery then you may want to consider continuing on a biologic after surgery as your current treatment does not appear to be working for you. Surgery should always be a last resort.

In the meantime if you haven't done so already you can change your diet to either low residue or as suggested a liquid diet may be beneficial. A liquid diet including EN has shown to be almost as effective as steroids. http://www.crohnsforum.com/wiki/Enteral-nutrition. If you don't have EN then you can use things like Ensure Clear to help you get much needed nutrition yet you can also make your own soups with lots or vegetables and strain it to drink the broth. You can start a diet change right away just be sure to inform your doctor whenever you're going on all liquids as this lets them know how bad your symptoms really are and they can help monitor you while you're on all liquids.

Keep us posted! :)
 

Catherine

Moderator
Hi

My daughter was also dx with Crohn's Disease at 16 years. She is now 19 and living in England. It took 3 courses of pred and many increases in her dose rate of Imuran to get her in a stable remission.

How long have you being DX? What medication are you on?
 
Hi there!

I've been diagnosed since January of this year. So the doctors are still trying to find a combination that will help. I'm currently on azathioprine and predisolone, as well as salofalk mesalazine enemas.
 
Welcome Jess,
My UK friends can correct me if I'm wrong but you may need to go through the medicine ladder to get remicade. Starting with a lesser drug and moving up to the biologics, but it sounds like it may be definitely something to mention.
I don't have Crohn's but my son and husband do. My son was diagnosed at 10 and will be 16 in July. He spent quite a few years on azathioprine and it just never seemed to completely control things. He has been on remicade for about a year and a half now and has never been better, doesn't even think about his Crohn's except once every 8 weeks when he gets his infusion.
The decision to move on to remicade from azathioprine was done after an MRI which showed a lot of inflammation in the small intestine as has been said the contrast is not good it's really sweet and you have to drink it fairly quickly but the MRI itself was not problem for him just hold still and hold your breath when they tell you.
I hope you get a good treatment in place that has you feeling well for a long time.
 
In regards to the med ladder and funding approval, I believe if your doctors decide you have failed azathioprine and they are talking surgery, then you would get approval for infliximab in the UK. They do always have the ability to decide on a case by case basis too for any med.

Are you under a paediatric GI or adult GI?
 
I haven't been on Azathioprine for that long, they've just put me on it because the oral mesalazine wasn't helping at all. And I'm under a paediatric GI!
 
Aza can take several weeks (6-8) to reach therauputic levels. When my son was on it we played with dosage for about a year before getting to theraputic levels. We kept upping the dosage on my son until he was at 150mg and still wasn't quite at theraputic levels he was 10 and about 32 kg and his father was on the same dosage at 91kg which to me just didn't seem right we ended up dropping down the aza to 50mg and added 100mg of allipurinol (made the aza more potent) and still had to up the dosage of aza to 75mg to reach theraputic levels. So I guess my question is have they tested to see if you are at theraputic levels?
 
No they haven't, I think that's probably because it hasn't been that long. I think the MRI will show them where we stand right now with this, because as I'm having a really bad flare up they're trying to find the right amount of medication to get it under control with the pred and the azathioprine.
 
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