Hello everybody! At the moment i am in the black tunnel, waiting for my biopsy to confirm psc. Probably overlap with AIH… i am from Netherlands and it goes very slow here, so i have to wait for another 8 weeks… I trying my best to stay positive, but having terrible ups and downs and dont know what i would do if i didn’t find that forum.
At the moment, i feel great phisycally, (not emotianally of cours) and would like to ask you some advices.
Can i carry on with gym? I always did running and weight, can i still do it?
What i have to exclude from my diet?
I dont get much info from dutch doctors, probablly because diagnose still to be confirmed.
Thank you for being here for me🌸
Dear Belgium22,
Thanks for your latest update. I’m sorry that the medical system in the Netherlands moves so slowly. I do hope you can get your test results soon. As far as your inquiry regarding exercise at the gym, most certainly keep doing that for as long as you can. It is very important for patients with PSC to get some level of core strengthening exercise through the disease process. This makes recovery from transplant surgery go so much better. So, by all means, keep up that exercise. As far as diet, there are so many different theories of what’s best for you. My doctors told me I could eat anything I wanted. There will come a time that certain smells and tastes will cause you nausea so you will have to deal with that. It is helpful I would say to minimize fried foods. They are harder to digest since your bile flow is restricted. Hope this helps. Feel free to reach out to the group any time.
Mark
PSC 2011 / Liver Transplant 2015
Hello Belgium22, Have a look at Dr Gundrys plant paradox diet and “Leaky Gut”. It may help keep inflammation in check. It’s helping me.
Mike
PSC 2000 / Liver Tx 2013
Thank you,Mike.
Have a nice weekend!
Hi Mark,
Arjen here from the NL. My son of 19 had overlap AIH/PSC and now ‘only PSC’. This often happens beacuse in children it is hard to dissemine what the exact diagnosis should be. He had two biopsies which took far less than eight weeks. Where is your hospital/who is your doctor? My son is treated at the AMC in Amsterdam by Prof. Beuers. He receives Vancomycine(following the advise of dr Kenneth Cox from Stanford Childrens hospital) and Ursochol which is keeping his liver values more or less stable in the past year. Sports /staying active is as I understood it quite important, if you have the energy for it.
Keep up the good spirit.
Kind regards, Arjen
Hi Belgium22,
Welcome to the community. I want to reiterate what Mark said. Keep staying active, go to the gym, running etc. Don’t let PSC interfere with your life, until it forces itself on you. Each case is different, some go years without a major incident. If you are feeling good physically, then my recommendation would be to keep living life, get blood work twice a year just to see how your liver levels are doing. We all go through the initial stress at the beginning. That’s to be expected.
Steve
Hi Arjen, i am also from NL, Den Haag. My diagnose is still to be confirmed. On april 5 i had appointment ( haga ziekenhuis) and got result that my SMA is positive and it doesn t look like AIH but more like PSC. ( my ggt is 450). Actually, with that i was send home and have to come back after 6 week with new blood work… And 20 may i will hear, when it will be possibility to have biopsy to confirm… i am in so terriblle stress, that i had to take off from work. I busy with that from february 6 and still know nothing.
Start thinking about changing hospital…
Lena
Thanks Steve!
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Thank you, Mark! You can not imagine, how huge support this community gives to people. I was completely broke before i found that group.
I Wish for everybody a good week!
Lena
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Hi There Belgium22!
I’m so sorry for your struggles as you work to figure out what’s going on with your body. I can appreciate the emotional roller coaster and just how overwhelming this can be. I was diagnosed in January 2018. I will say only this, it’s very easy to say… Live Your Life and don’t let PSC or AIH or any other chronic and incurable disease rule - but reality is… that takes time to take to heart and incorporate into our current life path. There are many factors that come into play in how well we all respond: current life relationships from home, to work, to family, to finances, to our own personal struggles (good and bad). My life has been and still is pretty upside down BUT I am finding that slow and sure I am beginning to come up for air and see the Beauty in Life again and not feeling so angry and upset that some disease has stolen my dreams and goals. I just have to now work slowly towards re-creating new ones and keep those that are still realistic.
Please be as patient and loving with yourself as you can. Start to build up a support group around you. Not easy as no person “gets it” until it happens to them, but it still matters. Exercise is SO important. Part of my pity party I quit working out (plus other physical issues that made any kind of working out difficult) but I’m getting back onto the other side and boy, It Matters. I also connected with a few groups on FB. I recommend when you are ready to reach out - the info in support groups is based on personal experiences - not all roses, but plenty of them:). I’ve met folks from all groups, some in person!!! and it has been wonderful to be able to share. I was fortunate enough to be a caregiver to a beautiful and strong PSC Warrior whom I met through a group who received the gift of life November 2018.
Continue to talk and reach out. It’s why we are here. I’m sorry your wait is so long, I’m in the US and my wait times are not long but the costs are astronomical as I’m a self employed, single woman. So… there always seems to be a check and balance. lol
Sending loads of hugs and luvs and powerful uplifting prayers your way!
Jennifer
FB Groups:
PSC Partners
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Hi Jennifer, thanks soo much for your warm words! I almost cancelled my holidays to Vegas( aftre 6 weeks) , but when i red your post i decided to go on and not to make my life miserably! I am quite strong person, but that waiting of 3 month killed me in some point.
Thanks again. Big hug
Lena
Hello Lena, and welcome to Ben’s Friends. I’m so glad that you are discovering the great emotional and social support that this community can bring. I see you’ve received some good advice from the wise folks here, as well as “meeting” someone closer to your home. That’s the way Ben’s Friends is supposed to work, and we’re glad that you are finding comfort and friendship here.
Did you know that this community is one of over forty for patients with rare diseases? Here is the story of how Ben’s Friends came to be.
It’s great to hear that your experience at Ben’s Friends is exactly what Ben wanted other patients to have!
All the best to you
Seenie
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Thanks🙏🏼
Hi Arjen,
It was good to hear from you today and I’m glad others responded to you as well. My doctors are located at Duke Medical Center here in the States in Durham, NC. My hepatologist while I had PSC was Dr. Andrew Muir. He was very instrumental in getting me onto the transplant list. My current hepatologist post transplant is Dr. Carl Berg also with Duke. I’m 3-1/2 years post-transplant and doing well.
Yes, encourage him to stay as active as he can, live life to its fullest. PSC will slow you down or stop you when it needs to, otherwise just go on living life. Take care and do let us know how your sons progress goes.
Mark
Hi,
I am sorry that you will not know the results of your exam for 2 months. It is nerve racking waiting a few days here in the USA. My advice to listen to your body and do what ever you can for as long as you can. I was diagnosed in 2016 with PSC and my son was my living donor in November 2018. I played a lot of golf and exercised as normal in 2016 & 2017 but 2018 my body started to really slow down as my MELD score rose and the disease really started to progress. Today, almost 6 months after transplant I feel really good and returned to hitting the gym and the driving range to hit some golf balls. My black lab is also happy that I feel well enough to take her for a one mile walk a day. With regard to communication with the doctors, like in the USA you will have to push that conversation. The doctors don’t say too much so my suggestion is to come armed with questions to each appointment and push the envelope on treatment. For example, I was initially told that I was not a candidate for a living donor so I asked another doctor and he said that may be my last chance. Amen! I went home and talked to my sons and both overwhelming agreed to be tested. Had I not pushed the question, I may be still waiting on the Transplant Waiting List.
Please let me know if there is anything else I can do to support you.
All the best,
Kevin
Thank you, Kavin, for your inspiring post.
It is great to hear your story and happy that everything goes good with you. I am now in the begining of the way, but i can tell, that you are guys, all Heros💪. Positive, helpful, open for any questions. You all can be proud of yourself and i hope one day my brain will switch))) and i will be also on that strong and positive side)).
Best regards
Lena
Belgium22, I would love to hear how you’re doing. Any updates? I pray you are well, both physically and mentally 
Hi jessmarunder29! Thanks for your message. I am ok and stable, still ( after 18 month)my diagnose is not really confirmed. PSC of small billy ducts or AMA negative PBC. I am on Urso , my bloods are under control and i am fine. Hope you also doing well. Thanks again for your text:cherry_blossom:
Belgium,
Glad you are doing well. Surprised, though, that they have not been able to give you a diagnosis.
Jeff