Still struggling to live with diagnosis

I have a psychotherapist that i check in with regularly. It helps me manage anxiety from dealing with UC, helps me to understand what I can and can't control, and sometimes....it just helps to hear a professional tell me my reactions and feelings are normal...so i don't have to feel bad for feeling bad :p ...i am down a lot these days because I have not had remission for 3 years, and if my current meds don't work then the only option is surgery. And i do not have a lot of support from friends and family... So I've been reading and reading everything about surgery - especially there are some good people on this forum who had the surgery and take the time to tell us how great life is post-surgery, that has been incredibly helpful for me.

I understand why the not being able to face another flare... considering how sick you were and being hospitalised...traumatic pretty much sums it up. Correct that a clear scope whenever doesn't mean it will remain as such. Living in the dread of another flare is something (I'm almost sure) that we all dread, especially if we remember the worst we've ever been and believe it will only be that way. My perspective is that flares aren't full blown worst-case scenario out of nowhere. It's a process of inflammation, and with many of us, we feel the symptoms. In saying that, some don't, and they would rely on other tells...more visual.

Experience of flares and treatment options to deal with early rectal inflammation is a good start....learning what YOUR symptoms tend to be and comparing with others is helpful. Not all symptoms are a flare, however....figuring it out can be confusing and stressful.....even for the most experienced.... when something is out of the norm and when one has other health issues going on as well. Sorting it out systematically is helpful., and it wont all get sorted at once.

It took me over 3 years to figure out my med regimen and how my symptoms related to flare. The frustration was/is that I can't control the time aspect of how I heal, and there are always other factors of life getting in the way. I cried a lot....and still do about my other health issues when the frustration and overload is overwhelming. Shutting down is easy, especially with depression and anxiety. They work in tandum....allow yourself how your mind works, but do it with awareness.

Do you have a counsellor or therapist you can talk to? If you do, ask to learn cognitive behavioural therapy and maybe some relaxation ideas.
How do your parents react when you are in overload?

Hang tough....riding the emotional and physical waves of your mental hard-wiring and health issues may be a given. Seeking how to cope will be helpful for you in he long-run. If something doesnt work, there are endless options available....but you have to learn the why and what that can will work for you. There are options med-wise and supplement-wise that are available. Add basics rectally...hopefully they will give you some physical relief. That can work wonders on an anxiety driven fear when you can treat as needed earlier than much later.
Supplements and food changes can help with discomfort, motility, stool consistency, etc.

Hugs,
q

I’m just super hard on myself, while also trying to grant grace where I feel I can without letting myself spiral out of control.

Basically: I don’t allow myself the option of feeling too bad for too long. This is not an approach that will work for everyone, but it’s the only one that works for me. I’m a fixer. There is a problem (UC), it is intractable. So we have to fix it. Whatever that fix is. And I just have to be patient until I get there because this is my [expletive] life and I’ll be [expletive expletive] if some stupid disease is going to take it from me. No.

Being perfectly healthy is not an option. That sucks, but it’s fine because I’ll just find a different way to reach my goals.

Something I want to do? Either I find a way to do it, or plan to do it once I’m well if it can’t be accommodated in my present state. Nothing is off the table. I get to live my life—the life I want. I just have to be flexible about the approach and I have to realize that the way I accomplish things may not look the same as I thought they would before my diagnosis.

In all that, there are crappy days. And I let myself whine and cry a bit because verily, it it crappy. But then I remind myself that it’s not helping anything and I refocus on the ways I can improve my situation presently.

I’ve also allowed that if things get too tough, I will see a therapist. No shame. We all need help sometime. But for me the thing that made the biggest difference is committing to patience, which allows me to keep my eye on the life I want and how to get there.

Doe, I would start another thread. OP, meditation has been a huge help for my anxiety. I don't know how it works, or why it works, but it helps me tremendously, especially with the worry that comes along with having a disease that can pop up at any time and can cause a cascade of problems that our medical system is not equipped to deal with. There is plenty of research to show its benefits. The best thing it has done for me is to help me to accept what life throws at me. I started it after listening to a podcast that stated many of the most successful people in the world meditate...Bill Gates, Ray Dalio, Oprah, Michael Jordan, Kobe Bryant just to name a few. I remember some people recommending it when I first started reading this forum and I thought it was just hippie nonsense. Not so.

Hello,
Like others I agree with meditation. Or simply making sure you take quiet time to yourself each day, even do a yoga dvd at home. I find this forum helpful when I need to read about experiences when my doc is suggesting new things. So while I’m grateful for everyone sharing here, I still say the internet can be good and bad. People are much more likely to share negative things. While it’s so hard not to worry, you can’t let UC own you. Take one day at a time for now. I was diagnosed in my teens and it was horrible. Then I had over 12 years of remission! Autoimmune diseases can go away, sometimes short periods and sometimes long periods. Now that I’m sick again, I try to relax, I got a purse I like that has room to carry some meds and things I might need if I got sick. Just knowing I had supplies made me not panic. You are much stronger than you know and it’s amazing how our bodies can recover and or adapt. I’ve met other ladies that have it and they also have careers, husbands, travel. You will still be able to go after what you want, there just may be some detours from what you expected. You’ll get through it. Stress is bad for healing so think positive!

MariaMaria, Thank you for sharing the celebrity link. It's always reassuring to know we're not alone and so many people with IBD live long and healthy lives.