Scared of the future and what it could bring with it.

Hi Raffi,

I know it's a lot to have to process, but the first thing you need to know, is there are countless IBD sufferers out there that are living perfectly normal lives. That's providing you get the appropriate treatment and medications. There are also severe cases, like many that are here on HW.

To go through your questons,

0. Sounds like you could have thrush. Could have been brought on by the antibiotics. There's a rinse your Doctor can prescribe, but an old fashioned tougue scraper works very well too. For your eyes, I would book an appointment with an ophthamologist.

1. There is a chance of side effects on any medication, even Tylenol. Most do quite well on most of the maintenance meds required for Crohn's.

2. Aza can take up to 6 months to reach effectiveness. It may prove to be enough to control your symptoms, but if not, you'll likely have to consider Remicade or Humira.

3. There is no cure for Crohn's. You will require some sort of maintenance medication for the rest of you life. The good news is, you're still pretty young. In the next 5,10,15 years, there going to be many advancements in treatment.

4. Definitely going to able to resume a normal life. Exercise included.

5. At one time it could happen. Today, it's extemely unlikely with the kind of treatment and care we have now.

Eye inflammation can be an extra-intestinal symptom of Crohn's but if your eyes look normal (no redness, distorted pupils, etc.) and they've been checked out by an opthalmologist, then I highly doubt you've got anything seriously wrong with them. You could be allergic to something in the atmosphere, straining your eyes with too much computer/phone use, or whatever. That said, did your eye doctor rule out dry eye syndrome?

Now for the rest of your questions... >_>

1. Erm... Probably the longest side-effects I got were from prednisolone. To cut a long story short, I ended up steroid-dependent a few years ago and could not get off them without the disease very quickly flaring up again. Eventually I couldn't even drop down to a low dose. I had surgery. That got rid of the disease, but I had one hell of a crash after coming off the steroids post-surgery. The main symptom was overwhelming fatigue, plus a DEXA scan showed I had osteopenia (bone loss). That lasted for a few months. I'm not sure what state my bones are in today, but I've started taking a vitamin D supplement in order to try and minimise bone loss from now on as much as possible. (I've also had bone loss in some of my teeth, resulting in periodontal disease. Hard to know whether that's from past steroid use or the Crohn's itself though.)

Prednisolone is the most dangerous drug used in Crohn's. That's the one you really want to avoid as much as humanly possible. The drug you're on, azathioprine, can have rare serious side-effects, which is why you have to have blood tests every 3 months. But all such side-effects are reversible upon stopping the drug: you are extraordinarily unlikely to come to any permanent harm.

2. Aza takes between 2-3 months to start working, but may take a month or two longer than that to reach full effectiveness. It's slow, yeah.

3. Rather unlikely. Aza is an old drug which is only still knocking around because the biologics are so prohibitively expensive (and also because two drugs, perhaps not surprisingly, have a stronger effect than one: an aza-biologic combo is very common). But the biologics will fall in price (with 'biosimilars', that's already happening in fact) and new, ever more targeted, drugs will come out.

4. I see absolutely no reason why not. You may have to put stuff like the gym on hold during severe flare-ups, but most people can achieve remission - or at least something close to it - most of the time. If you have a genuinely mild case (as opposed to one that starts off mild but gets worse...), you may never even experience a severe flare-up.

5. There is virtually no chance of this, particularly with modern day treatment and surgery. Crohn's, by itself, never kills anyone. But complications such as a bowel obstruction or toxic megacolon can potentially be life-threatening: you're not gonna get either of those with only one ulcer in the terminal ileum and no stricturing/narrowing. But for people who do get such complications, however, the pain tends to drives them to the emergency department of their hospital well before perforation or sepsis happens.

Did the eye doctors check for dry eye with the little paper strips?
Go easy on yourself and give yourself some time , it's hard to get a diagnosis no matter how mild or severe they say it is. It's a lot to take in all at once. It's great though that the doctor thinks it's a very mild case. Again, just staying on top of symptoms and not ignoring something until it gets worse, you should be fine. Make sure you have a doctor you are happy with. Do you have a primary care doctor? It's a good idea to have one.

My eyes have become vastly more sensitive over the last few years and I'm not sure whether that's connected to the Crohn's or not. I keep on getting uveitis (which almost certainly is Crohn's-related), but even when that's under control I still have problems with glare and sensitivity to light. Headlights at night are a nightmare when driving. And I couldn't use a computer screen without f.lux. Even in the daytime the glare of the sky can be horribly uncomfortable. Next time I see an opthalmologist I'm going to ask him/her about the glare. My dad thinks it could be cataracts but nobody who has tested my eyes has mentioned it to me.

Do you use f.lux by the way? If you don't, I would give it a try. The screen will look orange at first but you very quickly stop noticing it and it does provide a real relief to strained eyes. (Apple/Android have their own versions on their respective stores. On Android I recommend Blue Light Filter - Night Mode. No I'm not getting paid or am a relative of the developer.)

That's the thing: when nothing can be found, all you can really do is manage the symptoms.

As for Crohn's there's two types of 'mild' Crohn's. One type is genuinely mild and stays that way; the other type starts off mildly but gets worse over months or years (the rate of progress varies from person to person). I wish I could tell you what type you had but I can't, I'm sorry. Your doctor has probably seen some severe cases of Crohn's and, next to them, your case is extremely mild right now. But he's wrong to fob you off, 'cos he can't know whether you have just got a very early diagnosis or whether your disease is naturally mild.

That said, worrying about an outcome you can't control is pointless =/ Just deal with the Crohn's as it is today: it's all you can do. Life is stressful enough in the present, let alone without stressing about the future as well. I know it's almost impossible to avoid worrying about the future entirely, not least because we make plans for the future. But we can make as many plans as we like; life will still have other ideas. Things will happen that you never expected and the things that you were almost certain were going to happen don't happen.

Cool :p F.lux on Android seems to be in permanent beta, so for my phone I'm using a different app. It took a bit of trial and error, but I've thankfully found a really good one. I put it on my mum's tablet but her eyes are made of sterner stuff than mine and she doesn't use it.

I would try not to worry about hospitalisation and stuff like that. Forums like these aren't really unrepresentative of the entire IBD population: they are skewed towards the newly-diagnosed and the long-timers with refractory or complicated disease. People whose Crohn's is mild and easily manageable rarely join up, because they don't need any help.

As far as your eyes go, I've suffered from a condition called Blepharitis, which is a complication of Crohn's and Ulcerative Colitis. The treatment is a steroid ointment that must be prescribed by a doctor.