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I need advice and help - I'm 16 and worried

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Ulcerative Colitis
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Posted 3/10/2017 10:36 AM (GMT 0)
I'm currently 16 years old and I was diagnosed with UC when I was 13. I'm currently on 4g Pentasa, Mesalazine a day.

I'm starting to get worried that I'm not going to live a good, healthy life due to me being diagnosed young. I have a range of questions I was hoping you could help me out with...

What would my life expectancy be? How old will I be able to live too? How long have you had this disease?

Am I going to be able to travel the world?

Would I be able to potentially move to another country when I'm older? Have you?

How old were you when you were diagnosed? How long have you had this disease now?

Am I likely to die young of this disease?

I know these questions are quite morbid, but I'm just paranoid and worried about my upcoming life and success, and would greatly appreciate it if I could get the answers I've so longed for.

Thank you,

Tyler Laffar
Posted 3/10/2017 2:23 PM (GMT 0)
Folks with UC statistically have a normal lifespan. The main risk - and this is only after decades of untreated inflammation - is of getting colon cancer. People with UC usually have regular colonoscopies and dysplasia (abnormal cells which may become cancerous) is found early on. If the dysplasia is high grade, then colectomy tends to be recommended.

So no, you're not likely to die any younger than normal. You should be able to have a normal life: travel, move abroad, have a family, that kind of thing. The only thing which would stop you is severe UC which doesn't respond to medication - at which point you would most likely have surgery. Once the surgery recovery is over, you will be able to live a normal life again.

Hope this helps a bit.
Posted 3/10/2017 2:57 PM (GMT 0)
Great answer!
Posted 3/10/2017 3:13 PM (GMT 0)
Getting long and sustained periods of remission will allow travel. The particular habits, supplements, dietary care, and medications that work for you may make extended-travel in some places difficult.

In your long life, you can also expect many newer therapies and breakthroughs.

If you flare often and have trouble managing flares and obtaining remission, you young life may be cramped a bit. Incontinence and dating not a great combination, for example. But, lets assume that you case is well managed unless it turns out otherwise.

good luck
Posted 3/10/2017 5:36 PM (GMT 0)
Many people with UC have long and sustained periods of remission where they live a relatively normal life. I had 12 years of remission!

The vast majority of people with UC do not have severe disease and are able to travel, finish school successfully, work, have a good social life etc. I've had UC for over 15+ years and have a very good career.

I have a friend who was diagnosed at age 6 and was able to finish college, get married, work and has 2 children.
Posted 3/10/2017 7:28 PM (GMT 0)
I can understand why you'd be scared and unsure about what you have to deal with in the future. But I think you do have to remember that for the most part, this is a treatable disease. My doc reminded me that worse case scenario we take the colon out and it's done! I know that's simplifying it and probably terrifying for u being so young. But I always try and equatent to crohns or something that isn't curable (per say).

Some of the treatments and medications are intimidating and have some pretty intense side effects, but not everyone has the same reaction. If you're lucky (again, I use that term loosely), you'll be able to identify your triggers (stress, food, etc) if you have any -and then work to treat them accordingly. There's multiple levels of treatment and medication. I always feel like by the time I'm. Ready for he next level of medicine, I don't care so much about side effects bc I'm just so ready to feel better and for my colitis symptoms to go away!

My new doc said there are some really good treatments coming down the pipeline and are going to be available in the next few years. So that ado gives me hope.

I'd say your best bet is to try and find emotional support in your life and work with your doc to be the healthiest you can be. And as much as I find this board helpful, it also scares me- so take posts in stride! Use it as helpful information but as with anything, don't overdo it. Hang in there!
Posted 3/10/2017 11:55 PM (GMT 0)
Hi Tyler, I was diagnosed when I was 17. I'm now 32. Life expectancy is normal and quality can be good if you're in remission. I have traveled, even while flaring. Good preparation is necessary like having your meds and cleaning supplies and extra clothes. In Europe you an get a handicapped key so you have easy access to restrooms. I moved to a different country and it's definitely possible! Keep your chin up smile
Posted 3/11/2017 4:42 PM (GMT 0)
I was diagnosed at 16 and I am now 71. So yes, you can have a normal lifespan. I also went to college, and became a teacher and taught for over 40 years.
Posted 3/11/2017 7:58 PM (GMT 0)
I think you've gotten some good advice from the posters above. All good news, UC isn't as bad as you feared smile
Posted 3/11/2017 11:08 PM (GMT 0)
Thank you for all your great replys, they're really appreciated and have helped me alot smile

Thanks again,

Tyler
Posted 3/14/2017 8:29 PM (GMT 0)
You have every right to feel worried up front, but the truth is what most of these awesome other folks are saying.. Most UC cases are well managed after finding the right treatment. Some people here have mentioned long periods of remission (some over 10 years!). It is probably in your best interest to keep up with medication so you can treat your inflammation and reduce your risks of other conditions coming up, such as colon cancer. But like others have said, one good thing that happens to us is a frequent monitor of our colon such that cancerous cells would be found earlier than most people who end up with it.

I have only had UC for a year now, I am 24. My flares have come and gone about every three months but I found great success under a 4 week rigorous application of the SCD diet. I let my diet slip a little and have landed in a flare again but have some hope that I can get it back with my current meds and diet before moving on to a different medication. It is pretty rare to have severe UC (not totally rare but CCFA reports less than 5%). Moderate UC is pretty common though around 25% +/-5%... Most cases are in remission or having minor UC symptoms (around 75%). I would say its tougher to get into remission than coming back out of it. You will learn some things as you move forward and I think that we are all still optimistic, even researchers and scientists that better treatments are on the way

Best of luck!
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