How do you cope with the mental effects of uc?

Hi all,
Just wondering how everyone deals with their uc diagnosis in terms of mental health? Before being diagnosed 3 weeks ago, I already suffered with severe anxiety mainly health related and depression due to other difficult circumstances in my life and I feel like since being diagnosed my anxiety and depression have got even worse.. If that's even possible! Prednisolone is also adding fuel to the fire. I'm just really struggling mentally thinking about the future and the uncertainty of it all. Although the pred seems to have got my flare under control and I'm on mesalazine too, I can't stop worrying that my symptoms will return once I get off the steroids. And then I worry what next. How do people deal with this? I'm definitely the sort of person who always imagines the worst case scenario.

It is really quite difficult at times not to worry.

I too am a born worry wart and like to chatasrophise most health related things.
It’s incredibly draining when you have a bad phase:

My nurse likes to remind me that if I feel well, try not to worry about tomorrow.. baby steps.
Of course be aware of things. But don’t give it more head space than needed.

Things that keep me happy are my children, putting my phone down often. Exercise and being wth friends because during all those times I am not thinking about my colon or what it’s doing.

You don’t want to waste your life wondering about the what ifs and miss out on all the good stuff that could happen in the now.

Try and keep your chin up x

Yes, a new UC diagnosis is quite a head-trip, and a lot to wrap your mind around. The majority of us were young and healthy without any health complaints. And then *wham* UC falls out of the blue and we're stuck with the prospect of a lifelong, chronic illness with doctors, medications and the like to wade through. We've all been there ourselves, and can empathize. Hang in there, things will get better. In the end, you will survive and thrive despite having an UC diagnosis. We live mostly normal lives (other than the inconvenience of the occasional flare). We are able to pursue higher education goals, have families of our own, be successful in our careers, and pursue our hopes and dreams. The goal is to get us into what's known as a remission where we are essentially pre-diangosis. In a remission, I have one bm a day without urgency, without pain, and without blood. I can go about my day without giving a tinker's cuss that I have UC.

As far as coping goes, it does get a lot easier over time. Right now, as a newly diagnosed, you're worried about worst-case scenarios and worried that the sky-is-falling at the slightest unexpected sign. It's needless worry and anxiety that only makes your UC symptoms worse. To cope, invest in hobbies you enjoy and look forward to, as nobody can worry about his/her health 365/24/7 and expect to remain sane. Flaring might somewhat limit your options but there's plenty you can still do: get lost within a good novel series, binge watch netflix series, get lost in music, get a new game and obsess over it, etc. Find things that relax you, from light exercise to yoga, medication or mindfullness.

As far as living with a chronic illness goes, look at your feet and keep looking there. What matters first and foremost is how you're feeling today and moving toward a goal of achieving a remission. Life is random and absurd, and there's no knowing beforehand what the future holds for each of us (chronic illness or not). I could *wham* get hit by a beer truck tomorrow and that'd be the end of me. I could say a bunch of really dumb/awful stuff on Twitter and get myself elected president of the USA. There's no knowing what might happen, and plans don't always work out for even the most careful of us. In a remission you should be able to do anything without limitations. Having a chronic illness adds a bit more uncertainty to it all but there's no point worrying about things you cannot control. You have a few variables you can control, focus on those as the future cannot be controlled (far too uncertain for everyone).

The one golden rule with UC is that what's one person's miracle solution, does absolutely nothing for another, and might even make another's symptoms a whole lot worse. So my solution, is not necessarily yours. There's many here who've had very mild manner cases for decades that've only required the mildest possible medications like your mezavant. I'm a bit of a more difficult/severe of a case, and use a lot more medications.

Try and stay optimistic. Many have an uneventful taper off of pred. If you have any difficulty, then request mesalamine retention-enemas (such as Rowasa/salofalk/pentasa enemas) and add them to your daily prescriptions. You might want to add them right now, as they are very helpful and help you heal a lot faster.

If you start regressing during a taper, go back to your last safe dosage (the last dosage where you did not have any symptoms) and stay there until told otherwise, and call your doctor and report in on what happened. Typically, they adjust your dosages and add new meds, wait for that change to have an affect, and then try the taper again. It might delay your taper by 2-3 weeks or more.

I borrowed ideas from the book "Miracle Morning" by Hal Elrod. The book is a bit cheesy but the morning routine is pretty good, even if you don't use the whole thing. He uses the SAVERS acronym. (S)ilence and meditation, (A)ffirmation, (V)isualization, (E)xercise, (R)eading, (S)cribing or journaling. I no longer use the whole routine but I try to meditate and exercise every morning and repeat a positive message or goal in my head briefly. I read at some point or listen to books in the car.

This can be done in 10 minutes or an hour depending on how early I am able to wake up. It has changed my outlook to a more positive one. Meditation especially has been helpful, even though it was something that I never thought I would try. Many of the most successful people in the world meditate...Bill Gates, Jerry Seinfeld, Oprah, Ray Dalio, dozens of Fortune 500 CEOs etc.

https://www.google.com/amp/s/www.huffpost.com/entry/business-meditation-executives-meditate_n_3528731/amp

Yes, jsut use the salofalks as they will heal you. There's a small (less than 5%) chance you have an allergic reaction to the sulfite, a preservative used within the enemas, which is described as a dramatic worsening of your UC symptoms (like going from 1 formed bm a day without urgency to 6 very liquid and urgent bms).

Yes on both. Take tylenol at the very least, and get your B12 and D checked.

Pred withdrawl will do that as well.

Keep us updated on the enemas...are they 4g or 2g?

q

When I was initially diagnosed, just last year, I kind of freaked out because I could only think of two things: the potential for colectomy, and how the symptoms were going to seriously screw with my life. And while I will NEVER be the sort of glass-half-full-la-ti-da person that finds the best in terrible situations, I will say that my current, hideous, 9 month flare actually did a lot to make me less anxious. Because unlike my initial flare, I have seen the realization of one of my worries (the absolute tanking of my entire life) and grown very comfortable with my other worry (colectomy) as a result.

Simply: I’ve realized that there IS a way out of the worst of this, so the prospect of losing my colon doesn’t bother me the way it did initially. I can just try different drug protocols, realizing that, statistically, one of them should work. And if they don’t, there’s a way to get my life back.

It’s like I lit myself on fire and suddenly realized that taking a fire extinguisher to the face wasn’t actually the worst thing that could happen.

I think I’m recommending colon-specific situational nihilism.

Thanks all. My b12 is fine. Vitamin d lowish so on tablets. I guess I just have to stay positive that something will work.

Surgery worked for me.Mark how old are you ?? How are u able to be home so much??? People that work have to make a decision bc UC can destroy a good career.It got to the point where my UC was not getting better and i wasn't going to lose a great business i started.Surgery was the answer.Doesn't matter what the surgery is there are always risk we all take.One of my customers is a Dr and he says there are 2 reason hospital/Ins comp wants u out of hospital ASAP. Cost and Staff infection are the 2 big reasons, so theres always a risk.You seem scared/nervous about ever going the surgery route.I feel there are more positive stories then negative.This disease will never hold me hostage again-PRICELESS

I wish I had THE answer to how to deal with the stress. LOL I am currently in a minor flare. My dear wife and I had scheduled a long weekend visit with one of our 'kids' about a 7 hour drive away. I worried about how I would deal with that long drive without a restroom within 10 feet of me. But, I decided my kid was more important to me, than my worry. I loaded up on Imodium...not good advice...and my other 'anti-poop' medications, didn't eat the night before or that morning, and we went. Our kid and his wife were super understanding and we mainly stuck close to their house...but really did enjoy the visit. The return trip was pretty much the same. I have no idea what the future holds; my gastro doctor is trying his best to get my approved for Entyvio. Before we left, I had spoken with an Option Care nurse. I was supposed to call her the day we got home to set up a home infusion schedule. Well, had a phone message upon return to call her. My insurance ( primary- Blue Cross/Blue Shield) denied it. NOW WHAT?!! My stress level shot right up to about max again. First I was mad, then worried, then just thought the heck with it. But I'm going to keep fighting this crappy illness. I called my doctor and his staff are going to try to work it out. I am SO tired of U.C. , insurance, and the whole medical shuffle. I've been dealing with this flare for about two months now. Did a prednisone taper, dealt with the crusty face, shaky hands and fuzzy vision and finished the taper. Symptoms are still there and so is the stress. As for dealing with stress....just try to enjoy a little of ever single day. You WILL get into remission, just have to stumble upon what works for YOU. As ipoop said...the same things don't work for everyone. SO true. Just hang in there and know the steroids aren't forever. Try to get your mind on something that prevents you from thinking about your illness and get outdoors when you can. The sunlight and a little exercise help a LOT. ANYTHING that keeps your mind busy helps...at least in MY case. Again, we're all a little different. Good luck and NEVER give up.

So, basically it seems pred driven....

Call your doc asap....ask for something to help counter the side effects.

q