I just want to say hello to everyone. I often come on this site in the morning and wonder how everyone is doing ? Some of you are doing ok, your PSC is stable and you are living your life to the fullest. Others are suffering both physically and emotionally. I wish I could do more to help. I hope this site helps some of you.
Although the questions I see posted here are most often about specific medical issues, this site is also meant for anyone who wants to vent. Sometimes sharing your frustrations, anger and fears helps. It helps to know you are not alone.
I think it's often the way of these things. When people are well they will lost interest in this and just enjoy getting on with their lives. It makes for scary reading when you first look up PSC though.
As for me I've only recently joined and I'm not yet officially diagnosed (but I think it's pretty likely that I have PSC - ALP in the 400's for the last year) and I feel just fine. I'm cycling to and from work everyday, playing sport and everything. Long may it continue this way!
I got my colon out on May 1st and went the J pouch route. Edned up getting an infection and three weeks later I was finally out of the Foothills here in Calgary, Ablerta, Canada. Should have second surgery in late September (awaiting a date from the surgeon). My liver doc tells me I'll get pouchitis and it may trigger my psc and probably be back at square one in five years. I am not a fan of this bag attached to me and I am certainly glad at least I am going to give the J pouch a whirl. Obviously another major surgery will suck if I have to do this again but ce la vi. I hope my psc stays in "control" for a while yet. Been diagnosed in 1997 and all is pretty good. My energy is great, my counts have been the same for ever it seems like, the surgeon who removed my colon said he looked at my liver and said he wouldn't have even known I have the disease if I didn't tell him. So I am happy on all fronts. My liver doc says its all in the plumbing though so we need to keep an eye on the ducts and hence the annual MRI. Obviously cancer is always a concern but if they monitor me like they have been and hopefully catch it early - all will be ok. All docs feel I am years away from even being concerned with that but obviously I am always thinking it can happen to anybody and I know this disease can take off in a flash. So enjoying every day I can and hopefully this ride continues for years. Reading people's stories and updates is scary and I simply just hope all the best for everyone until we find a cure for our horrible disease. This site informs me of what to expect down the road (hopefully a long ways off) and I am so happy to be part of this group. I do believe a cure is coming and I hope it is in our lifetime. My liver doc here in Calgary is also optomistic about the future. Some things are in trial and to limit or stop the disease from progressing any further with meds sounds like a given in our lifetime but the side affects is always the concern. Here's to hoping we can ALL get together and tell stories where they ALL have a happy ending.
This site was a great help to me when my boyfriend was first diagnosed and it remains beneficial today. It was cathartic to have a place to read about others experiences and learn from them while also sharing our story. The BF remains in good shape. He went to Mayo for a check-up recently and things are calm and going smoothly. So far he is almost completely asymptomatic which is wonderful. I know things will change in the future and I'm sure I will turn to this group again when that occurs. Like Riz above, I am also very excited for the promising research being done and meds being developed.
In August I will start medical school here in my home state and my BF just got a new job in the same city. We start moving in next week! It's all very exciting and I feel so lucky and grateful that life is going well. Please don't be concerned if I drop off the map in the near future. Thank you for all your support and words of wisdom. I wish you the very best, Stephan! Everyone in this group will remain in my thoughts. If you ever need a dietitian's advice just message me :)
Thank you Stephen. I joined this site a few months ago when my daughter had her first attack and first stent inserted and I have to say that I felt much more reassured by the help I received. Thankfully my daughter is doing well and her bloods are good regarding the PSC but she thinks she has pouchitis and will not go to the doctor as she fears being re-admitted to hospital. She seems to be coping with it though and her next appointment is not too far away. I do regularly check in to read new posts and hope everyone is doing well.
Hi Stephen, so far so good here. I had my annual MRI last month and the ducts are stable and my bloodwork is normal, and I am relieved. My UC is in remission after three years of hospitalizations, woo hoo. I recovered from c-diff as well, so this year has been a big healing event :) I was diagnosed with UC around 27 years ago and have an annual scope, this next one is in October. I changed gastroenterologists last January and my "new" doctor is very vigilant and responsive. Previously I had suffered for a long time before meds were introduced, and my UC has to be caught quickly before it becomes a hospital stay. Have we heard anything new concerning vancomycin for adults with PSC? I was on vanco last January while hospitalized with UC, as a precaution. The hospital also gave me Florastor, a probiotic that works against the c-diff. When I was diagnosed with c-diff I googled treatments and learned about Florastor. It's an essential probiotic to heal c-diff and many patients don't know about it.
My 3 year old marriage is enduring my health issues and I feel more comfortable knowing my need to hit the bathroom three times or more before I leave the house is considered standard, so I feel more relaxed. Chronic IBS is just the frosting on the cake.
Thanks, Stephen, for inviting us to chat. I pray daily for a blessing to get us all through today and in the days ahead.
Brave Bunny - I believe the results from a small (7 adults?) high-dose Vancomycin trial at Stanford will be released later this year. A larger Stanford adult high-dose trial is still recruiting and we probably won't get results until 2016.
For me, this past year has been a rollercoaster. I started the year scrambling to get listed for transplant due to an almost fully occluded common hepatic duct and recurrent cholangitis attacks. I took care of the pre-transplant requirements but was recently denied being listed because I've been too healthy. I'd been experimenting with Vanco and finally got it to click for me. I've been asymptomatic with normal LFTs for 5 months. Part of me is still waiting for the other shoe to drop but so far so good. I'm a believer that antibiotic therapy is the future for both pediatric and adult PSC/UC patients.
jtb, I'm thrilled to hear your results with Vanco; I'd like to know what dose worked for you.
For me, the important variable was brand (manufacturer) rather than dosage.
I took generic Alvogen oral Vancomycin 1500 mg for four months. My ALP improved from ~600 to ~300 and most symptoms were eliminated. I then stopped taking Vanco to see if this improvement was a natural improvement of the PSC or if it was influenced by the drug. About 45 days after stopping Vanco I had a cholangitis attack and my symptoms returned. ALP returned to 600+.
I returned to Vanco treatment, this time with compounded IV Hospira generic 1000 mg (taken orally). One of the reasons I changed formulas is due to a number of clinical trials showing that the effectiveness of Vancomycin between generic brands is all over the map when treating various infections. I wanted to see if a different brand would make a difference for PSC. In my case, it did--my ALP hovers around 110 and I am asymptomatic.
Thanks so much for giving all of us somewhere to come to vent, to share our updates, to get advice or to get answers to obscure questions! It's great (and also quite sad) to realise there are so many of us out there, with this disease none of chose to have..
I am mostly doing okay thanks Stephen, apart from the bloody annoying pain under my right ribs, which varies in it's intensity... apart from that, I am feeling pretty good, almost normal in fact (TOUCH WOOD!!!)
Hope you are going okay too and great to hear everyone else's updates too!!!
Take care Stephen & everyone else who reads this... Wishing everyone the best of health & sending positive vibes out to you all....
Cheers - Erin :)
Thank you for posting this. I know it sounds crazy, but sometimes when things get too heavy I can't even come on here to write. I know this should probably be the first place I come to because at least the people on here can relate to what my daughter and I endure. I have silly challenges with my laptop and sometimes that frustrates me so much that I end up giving up on trying to log on here. We all have our journeys and although I do not physically have to face what the majority of you all face, seeing my little girl or reading/hearing her results seems to take its toll and often the pain is excruciating on so many levels.
Thank you once again.