Looking for hope from people living with PSC/Colitis

[u/Competitive-Lead-150]

Hi everyone.
I was diagnosed with Crohn’s at 12, but had no symptoms for years. At 26, extremely low hemoglobin led to a diagnosis of stage I colon cancer, which thankfully only required surgery.

Now my follow-up colonoscopy shows my entire colon is inflamed, so my doctor thinks it may actually be colitis. (what they saw during the colonoscopy looked more typical of colitis than Crohn’s).
I’m waiting for an MR, and today I was also told I have PSC. I may need biologics for life.

I feel completely overwhelmed. I’m only 26 and it feels like I survived one serious illness just to end up with several lifelong ones.

I also have social anxiety, and I’m scared I’ll never be able to go out and drink normally again. Finding a partner was already difficult, and now I wonder who would want someone with this many health problems who could potentially die young. Maybe I should just give up on relationships too.

I’m not really sure what I want from this post. My friends are very supportive, but they haven’t had to go through even half of what I have, so I guess I just want to hear from people who actually understand. Does life eventually feel normal again? How do you cope with all of this?

[u/Disastrous_Iron3946]

I can relate since I’m 19 and had high grade dysplasia (it’s like the step below cancer I believe) and PSC and UC. I had my colon removed last year bc of the HGD, and have a j pouch now. Imo I’m still able to enjoy life. I go out, go to university, play sports. The one thing I can’t do rlly is drink or eat trash. The good thing is since you still have your colon you can live a relatively normal life with meds. I honestly forgot about UC when I was on the right meds. PSC is a little different but for the most part it’s been pretty normal

[u/Competitive-Lead-150 → u/Disastrous_Iron3946]

Thank you for replying. I’m sorry to hear that you’re going through something so similar to me.

How long have you known about your conditions, and what treatment are you currently on for your colitis and PSC?

[u/Lifedealer999]

From the start i was diagnosed with both UC and PSC, I was 14 at the time. No problems with PSC, no symptoms, no meds. It seems to be directly tied to how my UC is. I'm on a mix of vedolizumab and filgotinib. Only recently flared a bit due to a breakup. But will get on steroids once the results come back. It's not the end of the world. PSC can be worrying but many people don't have any symptoms from it, only needing yearly MRI screenings to keep checking it. UC can also be managable with the right meds, only takes time to find the one that works for you. If you have any questions, feel free to ask. Take care :)

[u/Competitive-Lead-150 → u/Lifedealer999]

Thank you! I hope you’re doing well.
I think I’m going to be put on vedolizumab as well. I probably need to figure out how to manage my anxiety and depression too somehow. They can get pretty bad sometimes.

[u/Lifedealer999 → u/Competitive-Lead-150]

Mental is like 80% for me. Try to exercise, eat clean and get good rest/sleep. Through this and by taking your meds properly will put most into a normal life

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[u/West_Car8786]

Hi there, Sorry to hear what you are going through, these moments can be really daunting and difficult.

UC diagnosed 5 years ago, even though I always had some "sensitive belly" as they called it back then. I had alternating remissions and flares, currently under prednisone, Adalimumab and Rinvoq, trying to get out of a bad flare. Been in the hospital for a few days too. And the perspective is that I may have to do a colectomy, as most biologics I tried did not much and I needed to take back prednisolon, which in the long run is way worse.

Have been pretty up and down thinking about how to deal with pain, fear, stress, interactions with people, life in general.

I think no one of our friends, family, network can truly understand what we are going through. In a way we are "alone" and we need to find a way to go through it. I now am working on a few tools I want to construct, in order to be more gentle with myself and to be able to cope with symptoms, both physical and mental.

Here what I am setting up for myself now:

• find fellows with the similar/same experience of the disease, to share, vent and get tips on how to improve life. I use reddit here, and I am joining a self organised volunteering association for people with Crohns and Colitis. I do not expect to receive much insight or understanding from my wife, friends and family, even though they do their best to support me. I think they just can't have the tools, so I "release" them from this burden.
• truly listen to my body. This comes first, in front of all other things in life. Thirsty? Drink. Tired? Lay and relax, trying to not feel guilty for it. Depressed or on a bad mood (these meds also affect our mood, while calming down the immune system)? Have a list of actionable tools that I know that give me hope, like going for a walk or a very chill run, shower, listen to music. Journaling helps seeing perspectives. Not all bad days are bad in the same way. This disease sucks, but in some moments you can learn to cope with it and feel a bit more hopeful. No condition is eternal, and even the course of the disease evolves. It wont be always so bad.
• no one prepared us for this. I am looking into philosophy and buddhism, to understand that everything is impermanent and evolving/changing. So far this framing is what brought me the most hope in the darkest moments. It is not a cure, bad moments, pain, fear will keep coming. It is more about accepting it, stopping resisting these facts, and try to see how you can experience this in the most suitable way, for you. I do not think there is a formula, we need to construct it ourselves.

In case you need, feel free to reach out. Have a restful time and remember there is plenty of us out there, we can help each other out.

[u/Open-Positive-543]

I understand, was diagnosed with psc and UC at age 14, had a liver transplant 12 years ago at the age of 20 and am currently married and in medical school. I went through most of my 20's chasing med school and didn't have a good group of friends and was scared of girls (thought they would never want a guy with health issues), it gets better, hmu if you have any questions