Crohns / ulcerative colitis sufferers

Princey said:
I've recently been diagnosed with Pan UC, after spending 4 years going to the toilet 15 times a day and bleeding so much that I ended up severely anaemic with a resting heartrate of 130 bpm and getting out of breath just walking up a single flight of stairs. I've now been on 3g of Mesalazine for about 2 months and its been a life changer, toilet just once a day, no bleeding, no pain, and no discomfort.

However, all this has taken a toll on my liver and it looks like I'm going to be diagnosed with primary cholangitis sclerosing which is a result of UC. I had an MRI scan about 3 weeks ago so I'm now just waiting for my results. Unfortunately its terminal and the only treatment is a transplant and even then it can return.
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LeMson said:
I also have pancolitis and primary sclerosing cholangitis. Had it for about 10 years now, honestly thought I'd have needed a liver transplant or be dead by now. I took all my meds like a good boy and over the last few years it's acquiesced, I think my liver is still on the slide slowly, but I've been off med's for my bowels for years and I go like a normal person, once a day, sometimes even longer. I take 1 ursodeoxycholic acid for my liver a day. I've sorted the rest of my diet, I eat well, exercise, and my job has a physical element, fingers crossed it's not all doom and gloom mate, you aren't alone anyway
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Sorry to hear about the PSC diagnoses. Dr Google does seem to be quite pessimistic with its long term outcome for PSC sufferers.

I joined a PSC group on Facebook and going by a lot of the posts on there, many people live with PSC with very few symptoms for a very long time, without the disease progressing. Also, those that do have transplants tend to do very well afterwards, for the most part.

How did you both get diagnosed with PSC out of interest? Was it symptomatic or via bloods?

I'm sure @chipperhead had a liver transplant due to UC / PSC? I don't know how well he is doing now but maybe he can update us!
 
DanTheMan said:
Sorry to hear about the PSC diagnoses. Dr Google does seem to be quite pessimistic with its long term outcome for PSC sufferers.

I joined a PSC group on Facebook and going by a lot of the posts on there, many people live with PSC with very few symptoms for a very long time, without the disease progressing. Also, those that do have transplants tend to do very well afterwards, for the most part.

How did you both get diagnosed with PSC out of interest? Was it symptomatic or via bloods?

I'm sure @chipperhead had a liver transplant due to UC / PSC? I don't know how well he is doing now but maybe he can update us!
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It was from bloods, I have zero physical symptoms at the moment. I am just waiting for the results of the MRI to 100% confirm it and see how advanced it is.
 
DanTheMan said:
How did you both get diagnosed with PSC out of interest? Was it symptomatic or via bloods?
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Well my liver consultant said they can't 100% confirm it until they go digging around in my liver post-transplant, but it was done via bloods and some scans that showed beading, I've also had a liver biopsy as well about 7 years ago
 
Princey said:
It was from bloods, I have zero physical symptoms at the moment. I am just waiting for the results of the MRI to 100% confirm it and see how advanced it is.
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LeMson said:
Well my liver consultant said they can't 100% confirm it until they go digging around in my liver post-transplant, but it was done via bloods and some scans that showed beading, I've also had a liver biopsy as well about 7 years ago
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Thanks. I'm always concerned that I've got some form of PSC. My bilirubin is always raised in bloods but the doctors think that is quite common. I know there are other liver markers that tend to be better used for diagnosing psc but I'm not too sure if they were higher than usual.

I did explain the link between UC / PSC to my GP and they sent me for an ultrasound but it came back fine. I'm still not sure if that show the full picture though.
 
DanTheMan said:
I'm sure @chipperhead had a liver transplant due to UC / PSC? I don't know how well he is doing now but maybe he can update us!
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I got diagnosed with PSC in 2007, I was fine until aprox 2014 with only minor symptoms and then started to go downhill but kept working. 2016 I started to go rapidly downhill, I kept working when at times I really shouldn't have been but at the time I don't think I realised how poorly I was. Also I'm a firefighter so not the ideal job to be not performing at 100%
I got put on the transplant list October 2016 and was so ill got a transplant 11 days later.
It took me a year to recover and get back to work and in January 2018 manged to resume my role as an operational firefighter. Everything has been going great since however about 3 months ago my liver function tests values started rising and after an MRI got diagnosed with recurring PSC again a couple of weeks ago.
It hit me for a while but now I've just kind of forgot about it and just living my life, there's no point dwelling on things.
 
chipperhead said:
I got diagnosed with PSC in 2007, I was fine until aprox 2014 with only minor symptoms and then started to go downhill but kept working. 2016 I started to go rapidly downhill, I kept working when at times I really shouldn't have been but at the time I don't think I realised how poorly I was. Also I'm a firefighter so not the ideal job to be not performing at 100%
I got put on the transplant list October 2016 and was so ill got a transplant 11 days later.
It took me a year to recover and get back to work and in January 2018 manged to resume my role as an operational firefighter. Everything has been going great since however about 3 months ago my liver function tests values started rising and after an MRI got diagnosed with recurring PSC again a couple of weeks ago.
It hit me for a while but now I've just kind of forgot about it and just living my life, there's no point dwelling on things.
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PSC just seems like such an awful disease. I'm glad you're managing to live life as best you can. I suppose its either that or worrying about it constantly.

Did you get diagnosed with the PSC around the same time as the UC? I've had UC for 13 years and an ileostomy for just over one. I always had it in the back of my mind that I probably have PSC too, mainly as my LFTs are always slightly raised and even now the UC is under control, I struggle with fatigue a lot.
 
my brother has crohns and the weight loss was shocking. I think he gets on with life best he can but it a life changer for sure, my mother also has IBS and that is no joke either
 
So after waiting 12 weeks for my colonoscopy results to come back, I got told I have Chron's today. Consultant said it's the first time he's seen someone with an all clear colonoscopy to come back as Chron's. Biopsy showed I have patchy chronic inflamation, microscopic colitis and scattered granuloma.

I've been having symptoms since December 2020, which are cramping pains in my right and left flanks toward the back, which are much more painful at night, and diarrhea/loose stools pretty much every day

He's going to put me on Pentasa first, and have to have an MRI scan to see if there's anything in the small intestine and a load more blood tests

I am a bit confused though, as I thought microscopic colitis and Chron's are two different things
 
Just been invited for my 4th covid jab due to being on immunosuppressants. First heard of it back in October via CCUK, but only received an invitation today. Will be due mid January, 12 weeks after my 3rd.

Anyone else?
 
Ive had my 3rd and I've been told I'll get a 4th (booster)
I also received a letter from the NHS yesterday with a PCR test telling me If I test positive (after symptoms) then to contact them and I can get a new drug to help fight it straight away
 
DB_SamX said:
Just been invited for my 4th covid jab due to being on immunosuppressants. First heard of it back in October via CCUK, but only received an invitation today. Will be due mid January, 12 weeks after my 3rd.

Anyone else?
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Nothing here and I had my third a similar time to you, however they recorded my third primary as the booster due to that being the only option on their screen.

I will be surprised if they even offer me one given my first and second jabs were late due to an 10 week delay and endless calls/emails to get my GP to correct my categorisation plus they only offered the third primary after I asked the hospital to write directly to them.
 
WantoN said:
Not even Azathioprine?

Had my third yonks ago now, not heard of a 4th. Then again my IBD appointments keep being cancelled and pushed back.
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Nope nothing had my bowl removed so don’t need them now. I was on steroids up until a couple of months back. I only take loperamide now to slow things down a bit.
 
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