Today I was diagnosed with PSC….

[ThomasJFowler]

hey, i am new to this group. And today i was formally diagnosed with PSC.

I just wanted to reach out and say hi.

I am a fitness and mindset coach so this diagnoses will significantly impact my business. As over the past 6 months i have been in and out of hospital.

I also have gallstones, to which my gallbladder is going to be removed … pending a surgery date.

I appreciate everyone’s recovery times etc are different. But anyone been in a similar situation and could offer any advice/ tips.

Thanks in advance

[AyrshireK]

Welcome aboard ThomasJ, hope you find us a welcoming and supportive bunch.Sorry I can't provide much help with your current situation, just wanted to show someone had read your post.

The BLT has some useful information/ advice pages on both PSC and Gall Bladder at:-

britishlivertrust.org.uk/in...

britishlivertrust.org.uk/in...

Katie

[ThomasJFowler in reply to AyrshireK]

hey thank you so much for the reply. I will have a good old nose at BLT. I hope you have an awesome weekend

[Readlots]

Hi Thomas, welcome to this group. I know several people who have had gall bladder operations and they’ve bounced back at different rates. Your consultant would be best placed to advise on recovery times, does your hospital have a leaflet about recovery? Sometimes they are online.

[ThomasJFowler in reply to Readlots]

thank you for your reply. I really appreciate it. I didn’t get much info sadly. But i am going to did into BLT as advised from further up this thread. Have an awesome weekend.

[Katt12340]

Hi Thomas, I also have PSC and have had my gallbladder removed. As above we all heal differently, but I can tell you that being fit in the 1st place is significantly improving your chances of a swift recovery 😊While I can't comment on how soon you'll be back at it, I can say I was sore for around 3 weeks, but then felt able to go back to my daily activities. It's just keyhole surgery and you'll be a day case if it's plain sailing, hope this helps alleviate some of the unknown for you.

Katy x

[Kristian]

Hi Thomas and welcome to the PSC club. Unfortunately I can't comment on gall bladder surgery as mine went with my liver, but as others have said recovery should be straight forward but as with everything does have its risks of complications. But, those are not limited to folks with PSC.

In addition to the info on the BLT site, in the uk there is an organisation called PSC Support UK. They too have lots of great info and also have a Facebook group that is worth joining. Lots of good stories there and also helpful info. Also a bunch of really friendly people too.

Good luck with your journey and feel free to ask any questions.

[Bikafella]

I had gall bladder removed by conventional surgery (it was when keyhole surgery was just starting). I was very fit and back to my sporting activities two weeks earlier than expected. Now the keyhole surgery has reduced all the previous time frames. Because of my History of Ulcerative Colitis, this should have alerted surgeon to likelihood of PSC occurring in due course (it actually started about 20 yrs later in the event). Fortunately I was told that removal of the G.B. would not affect my lifestyle in any way at all and that's been the case. PSC is something that you'll just have to live with as there's no cure but it's not the end of the world. In fact even though I had classic symptoms of Nausea, change of colour of excretion and occasional jaundice I never lost a day at work. The liver gets blocked and bile leaks into the bloodstream causing the above issues. PSC Support is very helpful and you should seek help and advice from them. A good gastroenterologist will be your best friend in the end.

[Kristian]

Hi Thomas,

There is a Facebook webinar tonight with the PSC support folks and one of the PSC specialist doctors aimed specifically for those new to PSC. The link to the webinar is:

facebook.com/groups/pscsupp...

Its starts at 7pm tonight so hopefully you catch this in time.

[Bikafella]

I went through this (Ulcerative colitis since childhood, gall bladder removed in my early 30's PSC developed in 2001 & transplant in 2017) I was able to work through all this (except for the gall bladder op (10 days pre keyhole surgery) BUT have always and still kept fit and over the years developed a positive outlook on life and everything that affects me and my family. Maintaining your fitness is absolutely 100% crucial to coping with the PSC. In fact it's the only POSITIVE thing you can di fir yourself There's every chance that this will delay the onset of serious liver failure which is the main issue eventually. As a Mindset Coach - now is the time to use it for yourself as well as your clients. When I was in the transplant ward most of the patients had led very poor lifestyles and this confirms my point. Many had Alcohol related cirrhosis (poor lifestyle choice way back) Fitness and strength for long operations as you get older does not come without years of hard work. Recovery is generally quicker for fit people.