What will happen if I don't treat it?

Hey guys, this is my first time posting, and I just want to thank you in advance for your help!

I'm 18 years old was diagnosed with UC about 4 years ago, when I was 14 years old. I had a big lifestyle change when I started playing field hockey in high school. It was a huge increase in physical activity as well as stress, which led to a flare up. Other factors included a genetic component - my dad has UC - and a long stint on antibiotics for acne. My UC was diagnosed with an endoscopy/colonoscopy, and then my doctor put me on Prednisone and Asacol for about 4 months. These medications seemed to fix me, and I even went off my maintenance medicine after a while. After this, I was fine for about 4 years (had minor flares in between, but these would only last a day or two, as I would switch to a low fiber diet at the first sign of trouble). I really haven't had to think about my UC for a long time.

Unfortunately, after I entered college this past fall, my UC flared up once again. It started with just seeing blood in my stool, but progressed to cramping, urgency, and bowel movements 3-5 times a day. And there's lots and lots of blood and mucus every time. Ever since this flare up started, I've also started getting migraines :( This has been going on for 2.5 months now and I haven't really done anything about it except switch to a mostly low fiber diet. I'm reluctant to restart the process of seeing a GI doctor and taking medicine (which I hate doing). This flare up is really unpleasant, but I guess I can live with it.

I guess I have a couple questions. What are the odds of this just going away on its own if I control my diet? What do you guys suggest I do? And what I'm most curious about is, what will happen if I just leave it untreated?

I'm pretty clueless about UC, so your advice is much appreciated.

Post Edited (sj123) : 1/15/2016 10:18:00 PM (GMT-7)

sj123 said...
And what I'm most curious about is, what will happen if I just leave it untreated?

Nobody knows. It might just spread and get worse. I doubt you can control this with diet.

Nobody knows. But the longer a flare-up goes on for, the less likely it is to go away of its own accord. Frankly I'd just get back on the meds if they worked the first time. Everybody will say how you should stay on meds for life, but I feel like that's a personal decision. At the least you should get back on meds to get you out of a flare-up.

PS: Only a minority of people with UC follow a severe disease course. You are far, far more likely to carry on limping along miserably the way you are now than to end up in hospital with toxic megacolon and emergency surgery. Obviously there are always exceptions, but you can't live your life in fear of being an exception.

Post Edited (NiceCupOfTea) : 1/16/2016 6:08:33 AM (GMT-7)

The first thing you need to do is have another colonoscopy and see what's going on inside. It's possible you can treat your UC with rectal meds plus diet but if you have extensive inflammation then oral RX will be the rec. from your GI.

You need to watch out for inflammation because it can cause CRC (colorectal cancer), it's not just the symptoms you need to treat it's the possibility of getting cancer. CRC is generally slow growing but you may not know you have it because UC symptoms can mask cancer symptoms.

Diet has been my biggest way of controlling my UC symptoms which works for you too. But you need to see the bigger picture of your colon health and be proactive. Should you take daily pills? That's up to you but please get a c-scope ASAP and probably every 2 years so you know for sure what's going on inside. Don't let things get worse and have regrets about what you could have done.

if you can even consider not treating it, you are lucky to have only a minor fare.

know that it can get much worse. 30-40 bm a day, constant blood to the point of anemia that needs iron infusions. for some, lots of pain. by the time I was diagnosed I was desperate for a treatment.

I hope you don't get a serious flare.

Post Edited (DBwithUC) : 1/17/2016 2:09:30 PM (GMT-7)

DBwithUC said...
if you can even consider not treating it, you are lucky to have only a miner fare.

know that it can get much worse. 30-40 bm a day, constant blood to the point of anemia that needs iron infusions. for some, lots of pain. by the time I was diagnosed I was desperate for a treatment.

I hope you don't get a serious flare.

You shouldn't ever tell somebody they are "lucky". Even if you think it, it's just freaking annoying to hear and doesn't help the person who is troubled enough by something to post about it.

It's all relative anyway. Somebody with severe disease may go into remission for years, even decades, while somebody with 'mild' disease may still have quite bad symptoms and be suffering, year in, year out, without a break and with none of the meds doing anything. I know which position I'd rather be in.

Like others have said.
Not treating is dangerous.
You need to make an appointment with a GI who specializes in Ibd. Usually ones who practice out of academic institutions are a good move

While diet may help control the symptoms it does not stop the inflammatory process. Taking asacol is a very safe drug.

Make sure to get a stool test to rule out an infection

Read up on UC from legitimate places (mayoclinic)
Get educated and make wise decisions.

DBwithUC said...
I don't know if you find people with minor symptoms annoying

Dunno where you got that interpretation from, since I was basically sticking up for people with mild symptoms.

I'll put it another way. It's pointless telling somebody they are lucky, when there's about a hundred unknown variables you don't know about. It's even more pointless telling somebody they are lucky when the message is undermined by everyone else doom-mongering about how they will end up with toxic megacolon and colon cancer in the future if they don't treat their supposedly "minor" flare up and then stay on meds forever. (The former is unlikely; the latter depends heavily on disease location, length of disease activity and severity.)

Update for anyone interested:

I went to see my GI and he started me on Lialda. According to him I don't need another colonoscopy for a couple more years because I'm young and haven't had UC for too long. He said that once I've had the disease for 8 or 9 years it will become important for me to start getting a colonoscopy every 1-2 years. Thanks to everyone for their responses!

I have had UC for more than 30 years. So, no, don't expect it to go away. Sorry.