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New to website, 21 male with pancolitis

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Ulcerative Colitis
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Posted 12/25/2016 6:52 AM (GMT 0)
Hello, I'm new to this website and was diagnosed with pancolitis. I'm a 21 year old male and I'm very scared and find myself obsessing over this disease. I feel as though I have let it take over my life and it's all I think about. I constantly search on the internet about UC and read things that send me into a spiral of anxiety and depression to the point where I feel as though life is not worth living. It's just tough having so many questions I want answered. I just have so many questions I want answered. Will I get colon cancer since I have pancolitis? What should I do to help my condition that actually works? What's the best diet? What is the likelyhood that I will need surgery? Should I see another GI for a second opinion? Do the medications eventually give you other problems? I would very much appreciate any response, and I'm so eager to find the mind set to live a normal life again. Thank you

Post Edited (Harris) : 12/24/2016 11:57:45 PM (GMT-7)

Posted 12/25/2016 8:50 AM (GMT 0)
Hi, Harris. There's a lot more people on here that can answer your questions better than I can, but I just wanted to let you know--you're not alone on the obsession part! I've done the same thing. It's understandable, and it's good to be informed about your condition...

...but don't obsess over it.

When I got this whatever I have (see my signature!), I must've spent six hours a day looking up stuff on UC, c-diff, and everything in between. I scared myself silly. At one point I was curled up with a stuffed animal, sobbing that I was going to die--and I'm 44 years old! Seems crazy now, but that was me 7 months ago.

I finally had to convince myself that this sort of behavior wasn't healthy. Anxiety and stress actually make UC worse (honestly, they make any condition worse--I know a guy who beat pancreatic cancer because he simply refused to let it win). So the more you worry about it, the worse it gets. Trust me...I'm the biggest hypochondriac on the planet! Don't be afraid to reach out for help, whether it be a support group, friends, a therapist (that's what I did), and/or medication if you have to.

You're in for a lot of hit or miss in the future. I've gone through two GI doctors, and gotten five different diagnoses, half of which turned out to be completely wrong. I'm seeing a third one next month. UC's a tough one to pin down. The good thing is that it can be controlled. For as many horror stories that you read, there's five stories of people doing fine in remission.

My advice is to stop worrying as much as you have been, don't spend too much time on the internet self-diagnosing, find yourself a GI doctor that's honest and good for you, eat what you can handle, and stick around here too. The folks here are great. Above all, live life. It's not an easy thing to do, but it's worth it.
Posted 12/25/2016 9:33 AM (GMT 0)
My daughter was diagnosed with severe UC pancolitis at age 14 in 2015. She finds that eating plain broiled or sautéed fish, plain red meats, rice, cooked eggs, chicken, beans and occasional smoothies make her feel good. There are many foods she stays away from. She is on Remicade. She has accepted that she must be on a limited diet. Anything spicy is bad for her. She was able to eat the meat dishes at Chipolte, then, all of a sudden, she wasn't able to eat the meat because of spices. She can't have any milk, but she can have cheese. I keep lots of cheese in the fridge and a bag of frozen fish, and meat in the freezer. A lot of it is about making choices that are going to help you. It can be hard to do at such a young age.
Posted 12/25/2016 3:52 PM (GMT 0)
Welcome to the forum Harris but sorry you have to deal with Ulcerative Colitis like we all do. First, listen to holo100 as there's a lot of good advice in that post.

First, step back and take a deep breath as it's going to be okay. Most of us live mostly normal lives, have successful careers, families, and enjoy fun activities and hobbies. UC doesn't impact our mortality rate in any statistically significant way, so don't worry about that. I know a new diagnosis is a lot to wrap your head around, so much to learn about and we tend to fear the very, very worst. Some have very mild mannered and easy to control uc, others have more moderate cases that require strong medications, and some find surgery very quickly as there's doesn't respond to any treatment. There's always a solution that we'll find, give it time and patience.

What you and I aim for with Ulcerative Colitis treatment is remission which is a total absence of UC symptoms. You can essentially forget about uc and live normally. I had a good 2.5 year remission recently but I'm now recovering from a minor flare. And that's important to note as uc is characterized by periods of remission and flares, as flares are inevitable. You just want to aim for the longest possible remissions to have and infrequent, short, and mild flares.
Posted 12/25/2016 4:07 PM (GMT 0)
Will I get colon cancer since I have pancolitis? There's a 95 percent chance you will not get colorectal cancer. Only 5 percent of uc patients ultimately do get crc. The biggest variable in crc odds is years since diagnosis. After 10 years with uc, our crc odds do go up and as a consequence we get more frequent screenings through colonoscopies. It's almost always caught early, it's a slow moving cancer cured by removal of the large intestine.

What should I do to help my condition that actually works? Much of the initial treatment of uc is trial and error based. Your gasteroenterologist will start with mild anti-inflammatory mesalamine-based drugs and see if you respond within 4-6 weeks. If not, stronger medications are added like immunomodulators and/or biologics. We all want an instant-gratification solution, but the reality of the situation is our doctors usually don't get it righ on the first try, second try, or sometimes even the third try. It's frustrating and can take a series of months to find your ideal treatment to control your symptoms and regain a good quality of life. Uc is extremely individual and no treatment works universally for everyone.

What's the best diet? Whatever works for you. Remember that uc is individual bit, that applies doubly to diets. What is somebody's miracle, doesn't work for another, and can even make another's symptoms much worse. The Internet is full of contradictions for that reason. Keep a food diary, record what you ate, your symptoms the next day and look for correlations. I eat normally as i never found specific things that bother my uc symptoms.

What is the likelyhood that I will need surgery? The odds say 80 percent of us do not need surgery. Only 20 percent of uc patients ultimately require surgery. Surgery is only applicable to those who don't respond to any of the available treatments.

Should I see another GI for a second opinion? Only if you cannot work well with your current doctor or disagree strongly with your treatment plan and your doctor won't compromise.

Do the medications eventually give you other problems? For me, taking medications is like eating sugar pills as i have no side effects from them. Some do have adverse reactions and discontinue a medication to resolve it. Allergic reactions upon initally taking a new medicine are most frequent reaction.
Posted 12/25/2016 5:33 PM (GMT 0)
What meds are you on?

Obsession with information and worry is normal....eventually you will figure out the answers to your satisfaction and settle down a bit.

Again...what meds?

Welcome to the forum.

q
Posted 12/25/2016 9:14 PM (GMT 0)
The one thing that helped me to cope, and should help you, is to know that the likelihood of needing surgery is statistically low (20%, maybe less at this point). The even better part, is that if it got to that point, which it won't, you can live a good life after surgery. I had surgery, and all my fears, and thoughts about UC, are in the past. I live a normal, full life now. Try not to worry about the worst case - as it is rare. Get on medication, you can go forever with medication. If the GI you've seen wasn't helpful, yes, see someone else. Find someone you like and feel comfortable with. You have tons of options and most do not have terrible side effects - actually, many people take even the highest level of medications without many side effects. Try to calm your nerves, being on edge isn't going to help your condition.

Happy holidays! smurf
Posted 12/26/2016 8:09 AM (GMT 0)
I Can't answer your questions any better than the other posters have. I just wanted to say I can relate. After my pancolitis diagnosis. I was depressed and would give myself panic attacks thinking about the same things you are. I was severly depressed during my first terrible flare.

That was all going on before I had an actual diagnosis or I recived any treatment. What really helped me shake those feelings was finding a GI doctor I felt comfortable and confident in that would answer all my medical questions. I had a lot of similar questions to the ones you have.

It was definetly a life changing event. It took some time for me to process it all. I think I essentially went through the seven stages of grief. I still worry every now and again, but it passes pretty quickly.

The in short version. Find a GI you feel you can trust and give yourself time to process. Know that you aren't inherently doomed. There are plenty of treatment options to try.
Posted 12/27/2016 5:02 PM (GMT 0)
I'm currently on 6 pills of sulfasalazine. I was on prednisone, but I've successful tapered and been off it for a month. Thank you everyone so much for the replies. It definitely gave me some positive thoughts and I look forward to learning more form this site 👍🏻
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