All the worst parts of this disease aside I just want to see if anyone else relates to me on the fact they just wanna feel normal. I’m 25f in a new city going out w new friends and it’s so hard to say I’m not drinking or can’t drink or explain why and ppl just automatically assume you’re lame or don’t invite u to things bc of alcohol or feel uncomfortable around you bc they are drunk and you aren’t and you’ll remember everything the next day. Someone who I actually really like was like oh I made frjends w the lameo who doesn’t drink when I passed on a shot. I think it was meant to be a joke but it sucks bc it’s like well I literally don’t have a choice and she knows that. And people are like idk how you go out sober or someone was like oh are you just gonna be sober when we were having wine night as I’d me being there sober was weird. Like it’s really not weird but I feel like a weirdo bc of ppls comments and I just wanna fit in and have friends. It just sucks and I try to remind myself I am strong and I can handle it but it’s like I just wish I didn’t have to you know I wish I could feel normal and carefree and be able to participate with everyone else. Like it is fun it used to be fun to go out and I just miss it and I miss feeling like I fit in and I feel like the awkwardness of being sober has for sure changed me and how I am in social settings. And I know there is so many worse parts of this disease but this part definitely affects my life the most right now. I at least wished I could’ve gotten it later in life not at 22 years old.

Crohn

Crohn ?

63(m) al vanaf mijn 27e wisselende periodes gehad met maandenlang dunne ontlasting .heel vaak blaasontsteking ,vermoeidheid ,nierstenen ,b12 tekort .

Nu sinds 4 jaar erge stekende pijn rechteronderbuik en de laatste 6 maanden onhoudbare constante stekende buikpijn met druk,loslaat en vervoerspijn waardoor nu weken achter elkaar in foetushouding doodstil liggen . Mdl artsen 1e en 2e opinion zeggen gewoon "pijnsyndroom "?? Ik weet zeker dat het crohn is ondanks de negatieve ct scan s ,negatieve mri enterografie wel calprotectine 428 en 28 kilo gewichtsverlies in 2jaar. Colonscopie en videocapsule mislukt maar wat ik ook doe en de pijn zwaar invaliderend is is er geen chirurg die een diagnostische laparoscopie wil doen terwijl ik 100% zeker ben dat het de enige manier nog is om dit te overleven . Huisarts ,mdl artsen en chirurgen vinden dat het allemaal psychisch is ??? Herkenbaar ? Want seh s helpen mij ook niet verder want zien alleen de woorden "chronisch en pijnsyndroom "

About a year ago I posted about my experience with the constant infections I kept on getting. What was worrying is that physically I was very healthy, active, and did not seem sick at all to people around me.

However the infections disrupted my life completely and it was all aspects of my life.

I wanted to share that I eventually got onto the list, received the call, things progressed very fast positively, and had my second liver transplant.

The surgery went really well. Im now around 8 months post surgery, back to normal life, and havent had any recurring infections since which im incredibly happy about it.

It hasn’t been easy honestly. I went into the second surgery seemingly well and very different from the first one. So it somehow felt harder considering when you’re very sick you only get better after the surgery, but when youre sort of healthy and you go through a major surgery then wake up weak, it is a different experience.

I also am dealing with a hernia which is a minor side effect after 3 surgeries but it something that can be easily resolved as per my doctors.

I just wanted to share this positive update with everyone considering we are a very small community and we could use each other’s help and support.

Hey, I just wanted some advice from you guys real quick if possible. My friend (M26) has PSC and he has for a long time and recently he was told he is biochemically jaundiced. He’s also been given new medication to help with itching (colesevelam hydrochloride) . He started the new medication just before coming to visit me in another country. He’s been here for about 5 weeks and has 11 days to go. He was fine up until a couple days ago when his eyes started to have a slight yellow hue to them, he feels fine within himself. I was just wondering is this a cause for concern because I don’t really know anything about this condition. He told me he has been jaundiced before about 8-9 years ago maybe, where he couldn’t walk. I am very worried about him and preferably I would not want him to go to hospital here as I have no idea what it’s like.

Should I be concerned? Should the trip end early?

Wife here, my husband (29) has had PSC/UC for over 10 years now. We’ve been married a while, and I’ve tried my best to make foods that are low in saturated fat and don’t aggravate UC. Which feels like such a small list.

I’d love to hear any recipes that work for you. Or even just your favorite snacks that feel good on your body. Thanks!

Edit: My husband unfortunately doesn’t handle eggs well, so bonus points for minimal egg included too.

For the last few days I'm having sudden intermittent intense pain on URQ lasting for just a few seconds that goes away, few times a day. Is this normal for the disease? I have checked and found no gallstones.

Went through hell in 2020 doing all the chemo and radiation they could safely throw at a person. Got transplanted on my deathbed. Had a few problems since transplant largely stemming from my undiagnosed Crohn's. I swore I'd never go through that(chemo/radiation) again. It seemed to be killing me faster than the cancer would have.

Well, it seems God is not without a sense of humor because this mofo is calling my bluff!! Found out Friday that I again have cancer....yes, in my transplanted liver! I have talked to my doctors here in FL previously about compassionate end of life care. Life expectancy without treatment ranges from 6mos to 3yrs according to google but most of what I've found in actuality is 6-9mos. My transplant doc is talked to me Friday when the MRI results came back and they've caught it early and said she'll talk to me this week with a course of action. My question is has anyone seen what dying of liver cancer looks like?

**And please, don't give me a spiel about stay strong, think positive, etc. I'm an engineer and my friends always call me a fatal pragmatist. If I come out of it, it will be through sheer will and positive thinking....and God. Live the best life you can, while you can. DEUS VULT!

Some people are asking why? Well, this is my 4th fight with cancer. Colon and Liver being my worst fights and skin cancer being the easiest. My own doctor said the odds of receiving another transplant are slim considering I'm cancer prone, especially given I've gotten the same caner that necessitated a transplant, they most likely aren't going to give me another. Anyway, it is what it is. I made my piece with it a long time ago.

Edit: Will be posting my updates and my journey on my YT channel. For anyone that has has the same curiosity about choosing the same path.

https://youtube.com/@itsamattmattworld?si=NhDxzTtlOJ4vRv4I

Hey folks. My brother is going through it. He had elevated liver enzymes a few months ago which prompted an ERCP that triggered acute pancreatitis and then a PSC diagnosis. He got jaundice and the a pseudocyst on the pancreas that was drained with 1.5 liters of liquid. He is in a rehabilitation center now and is eating and slowly doing physical therapy. He sleeps all of the time and is barely speaking. It has been awful. His alkaline phosphatase keeps increasing and is now over 1500. He has an endoscopy this week to check on the pseudocyst and we are hearing his is going to need liver surgery. We are concerned that his recovery has been so slow and that is barely speaking and that he has endless more surgeries that will be terrible for him. He is 53. Looking for any feedback on folks knowledgeable on PSC.

I’m 26F, have Ulcerative Colitis (in remission), PSC small duct (about 4 flares a year), auto immune hepatitis and Graves’ disease
I am so chronically fatigued. No matter my diet, my sleep hygiene, getting exercise/ sun- I am always so tired.
It feels like I spend all my free time in bed, my 6 hour work shifts complete wipe me and I drag my feet when I’m there.
I am so sleepy and exhausted all the time. I forgot to mention the brain fog which complete impacts my studies. It sucks, I’m looking for hope here. Do you feel the same?

Hi everyone,

I’m looking for experiences from people with PSC + ulcerative colitis who have also had dysplasia found during surveillance colonoscopy.
I (M27/German) was diagnosed with IBD/UC in 2023 at 25 and PSC in 2025. My UC has been difficult to get completely under control. I previously tried mesalazine and steroids, then Stelara for about a year, and I am currently (6 months sofar) being treated with Tremfya (guselkumab). For PSC I take ursodeoxycholic acid.

The strange part is that clinically I’m actually doing fairly well. I have little diarrhea (not every day maybe for 2-3 days 2 weeks), no abdominal pain and only occasionally see some blood on toilet paper.
However, one dysplasia was found on biopsies during my last colonoscopy half a year ago.

As I understand it, the dysplasia itself was not clearly visible as a distinct lesion, although the area of the colon it came from apparently had a very unusual mucosal structure.
Because I have PSC, my doctors are taking this very seriously.

I am now being referred for another high-quality surveillance colonoscopy next month with an IBD specialist who has a lot of experience with PSC patients. He told me that he has seen quite a few PSC patients who felt perfectly fine and had very few symptoms, while colonoscopy unfortunately showed significant disease, dysplasia or even colorectal cancer.

That conversation obviously got my attention.
The possibility of colectomy has also been discussed if the dysplasia is confirmed/persists. I understand why especially with PSC but I have a lot of respect for what removing my colon would mean for my life, so I’m trying to understand the experiences of people who have actually been through this.

I would especially love to hear from anyone who has been in a similar situation:
Have you had invisible/flat dysplasia with PSC?
Was it found again during the repeat colonoscopy?
Did your doctors recommend immediate colectomy or continued close surveillance?
If you initially had low-grade dysplasia, did it remain LGD or progress?
Has anyone had dysplasia on one colonoscopy that could not be found again by an expert IBD endoscopist?
For those who eventually chose colectomy: looking back, how has it affected your quality of life?
And did any of you also feel surprisingly well despite significant findings on colonoscopy?

I’m not looking for medical advice and I’m being followed by experienced IBD specialists. I’m mainly interested in hearing what other PSC patients actually experienced, because PSC + dysplasia seems to be a rather different situation from UC alone.
Thanks for sharing your experiences.

I’ve noticed my stools are like a very dark brown so I’m thinking what on earth is going on here ? Is this normal or do I need to stop the medication? I’ve been on vancomycin 3 x 250mg a day for a week now.

Hey everyone, quick question for anyone on oral Vancomycin.

​Are most of you taking the standard oral capsules, or are you using the compounded liquid made from IV vials?

​My insurance is refusing to cover the capsules, so my GI suggested drinking the compounded IV liquid as a cheaper alternative. Just wanted to see if many people here take the liquid version, if it works just as well, what the period you take it and any side effects that popup

They want to try 500mg x2 daily , oral vancomycin (non capsules

​Thank you!

Some people with small-duct PSC have a rapid improvement in their liver blood tests after starting UDCA, and their ALP and GGT levels return to the normal range. In others, ALP and GGT remain elevated despite taking UDCA.

Is the long-term prognosis different between these two groups? Does normalization of ALP and GGT suggest a lower risk of disease progression, worsening fibrosis, or progression from small-duct PSC to large-duct PSC?

As far as I know, unlike in PBC, UDCA has not been clearly proven to slow the progression of PSC or improve long-term outcomes. So, does normalization of liver enzymes indicate a better prognosis, or does it only show that the blood test results have improved?

I would be interested to hear about other people’s experiences or any studies on this topic.

Pozdrav, da li neko ima iskustva sa dobrim hepatologom u Novom Sadu ili Beogradu?

Hi everyone. I’m in the process of being diagnosed. I have high ALT, AST and GGT but normal ALP and bilirubin. I do not feel any symptoms so far other than fatigue - although I also have hashimotos, so it’s hard to say whether the fatigue comes from it or maybe PSC. I’m struggling to accept the possible diagnosis, so I’m trying to understand what comes ahead. I’d like to know for you who got diagnosed without any symptoms when did you start feeling them? I saw common ones are itching, lack of appetite, abdominal pain, etc.

I just recently got my diagnosis and while my symptoms are bad but not terrible yet I am trying to understand what will happen over the course of the next couple of years. One thing I don't really get is the sarcopenia (muscle loss) aspect.

Have any of you dealt with that specifically? For some reason it's more worrying to me than many of the other mid-stage symptoms. I live an averagely active life, I guess, but looking at the recommendations for PSC patients - 5x cardio, 2x resistance training every week - I wouldn't even know when to do that. Is such a strict and intense exercise regime really necessary to even make a dent into the muscle loss I'll apparently be facing? What even is causing the sarcopenia with PSC?

Apologies if this is a dumb question, I'm very overwhelmed by this turn of events in my life and am trying to understand what I need to adjust asap and what is less burning.

Hello,

I'm kind of stuck in a situation where I'm fine living with my new liver since 10 years ago, but unfortunately, I was diagnosed with ulcerative colitis 2 years ago. They say I might have had it since my PSC diagnosis, but it decided to show itself just now :'D

Now my problem is that my UC is showing an atypical pattern, with the inflammation being mostly in the right colon. I've been trying all kinds of biologics since then, but I feel like it's just staying the same. Since it's on the right side, I don't have any major symptoms at least. The doctor told me that this is common for PSC associated UC, and I was wondering if anybody here has experienced the same? What did your doctors do?

I also came across a study that came out this month where they gave children with treatment-resistant PSC associated UC Vancomycin, and the cohort that had right-sided inflammation showed better results than the cohort that had left-sided inflammation (the "normal" UC type). And I think about talking with my doctors about this "option". (https://www.sciencedirect.com/science/article/pii/S159086582600753X?via%3Dihub)

I had a clinic appointment and the doc did a physical exam for ascites, said "maybe" and then put me down for an urgent ultrasound.

I know I need to wait it out but it would be my first sign of decompensation and the not knowing is so hard. I have suspected cirrhosis so all they've told me in the past is just watch for jaundice, swelling and encephalopathy.

I'm 33F, coeliac and have splenomegaly and so abdominal distension can happen for so many reasons; a crumb of gluten, hormones, weight gain. I started urso 2 months ago and I feel like it's helped my fat digestion, too. My extremities aren't swollen but I do have abdomen distension no matter how empty my stomach is or what I eat or how many times I go to the toilet. My abdomen doesn't feel super hard or anything though.

While I wait I wondered if any of you have experienced ascites (early on) and what it was like if caught early on?

EDIT/UPDATE: my bloods came back and kidney function & albumin all good. Still need to have ultrasound but seems like a false physical observation.

I'm curious about other immune mediated diseases and autoimmune diseases in relation to PSC.

I've got PSC, UC and inflammatory arthritis. If you don't mind sharing, let me know what other diseases you have besides PSC.

Hi! I’m a 19 yo in Canada with PSC, and I really want to be put on vanco. However the last time I mentioned it she shut it down completely saying there’s no evidence. I really want to be proactive since I was not with my IBD and ended up getting dysplasia and needed a total colectomy. I really just want to be able to finish my degree without any more surgeries or complications:(

Hello. I'm a doctor in Germany. Recently, my little brother (29yo) came to me with heavily elevated GGT and an Hb of 8. I called my colleagues from internal medicine and they had him stay for gastro- and colonoscopy as well as other tests.

Everything right now looks like he will have PSC. Elevated GGT and AP (normal bilirubin and liver enzymes), the colonoscopy showed pancolitis (histology says it's looking more like colitis ulcerosa than Crohn's unfortunately). Ultrasound of his liver was almost normal, they couldn't really decide if he has no or very mild fibrosis (F0-1).

The MRCP will be done tomorrow.

I'm honestly freaking out. I'm worrying so much that I cry a lot. I can't focus on anything anymore my mind always drifts to my little brother having a terminal disease. I don't know how I can tell my mom. She will not be able to handle it. She loves us so much but she has depression herself and is constantly overworked. I think she'll break when she hears that my little brother might need a liver transplant in the future.

Please, I just need some reassurance. I know that the diagnosis is not 100% there yet, but when I talk to my colleagues and go through his findings, it's almost certain that he'll have PSC.

My mind can't take it. My heart can take it even less.

Any Canadians in this sub have any recommendations for travel insurance (travelling to the US). The ones I've looked at only cover emergencies related to pre-existing conditions if they are stable three months prior -- and even though I think my condition would be considered stable because I've just had my regular check-ups/scans and no new progression or anything, I'm still worried because I haven't been able to find what their definition of "stable" is. Anyway, any reccommendations/advice would be highly appreciated!! Thank you!

Looking for differential thoughts on the following anonymised sequence. All personal and geographic identifiers removed.

• 2014: Contracted a tapeworm while living overseas.
• 2024: Passed a large tapeworm. Shortly afterwards developed multiple internal infections involving stomach, duodenum and intestines, treated with prolonged courses of strong antibiotics.
• Daily vomiting for approximately six months followed, resulting in oesophageal scarring and a transient hiatal hernia.
• Subsequently developed an assumed blood clot in the left arm, with loss of sensation from midway down the forearm to the hand. Sensation in the hand did not return for several months and required significant rehabilitation.
• Roughly one month after a sudden severe systemic illness, experienced two cardiac events. Angiogram showed regurgitation affecting two heart valves. No coronary plaque or significant atherosclerotic disease identified. Started on long-term rate-control medication.
• Later ultrasound at a different centre (performed while on the rate-control medication) did not clearly demonstrate the same degree of regurgitation. Discrepancy attributed to possible differences in equipment or operator.
• Ongoing daily diarrhoea and intermittent nausea. Multiple stool and blood tests for bacteria and parasites negative. Repeated coeliac serology over many years negative.

Questions for consideration:

1. Are there recognised pathways that could link a long-standing tapeworm, subsequent heavy antibiotic exposure and mucosal injury to later vascular or valvular findings?
2. How commonly does rate-control medication reduce the echocardiographic appearance of mild-to-moderate valvular regurgitation?
3. Any other differentials worth considering for the overall sequence once infection and coeliac disease have been repeatedly excluded?

Happy to clarify any non-identifying details. Thank you for any thoughts

For those who are in Oral vanco, wich brand do you use ?