PSC Update-Video 37

[@UCandPSC]

I agree Faith! If there IS any positive to having chronic diseases, I think it makes us pay more attention to our mortality and the importance of actually living life! PS-I responded to your email!

[@annetterochelleaben9207]

Tuesday, October 1st would have been your Grandmother's birthday... I sure do miss her and love YOU!

[@UCandPSC]

Hey Bev! GOOD to hear you made it through the hardest surgery...IMO anyway! I also had some issues w/ output post 2nd surgery. My nurse said to shoot for 80% of the time having thicker output. If you're already using the Imodium, the other things I would suggest are to decrease your liquid intake in early/mid evening and try and increase your carb intake...any kind of white flour stuff, like graham crackers, goldfish, bread, rice crispy treats worked well...LOL!

[@flowry2]

I'm so happy your uc surgery process has gone reasonably well :) going to Hawaii and being conversational in Spanish are things i def wanna do too! we won't ever regret actually living :) - Faith ps I emailed you cause my most recent blood work came back with a high liver alkaline level and they want to test it again in a couple months

[@bevlarabie8393]

Hi Jay jus started watching your videos ,very helpful & glad to hear u doin well .I had j-pouch surgery in july & waiting for take down surgery hopefully soon.my question is'i cannot seem to control my stool thickness at nite while sleeping. every mornin complete liquid even though i take immodium @ bed. i watch what i eat & stop by 7pm. i also doin 3 part surgery,but never had this problem after my initial surgery. im stumped and any suggestions would be great.. All the best BEV

[@UCandPSC]

Hey Bev! (Part 2)..sorry...I ran out of room! Just make sure that you're getting enough liquid throughout the day so you're not dehydrated...not sure if that's an issue for you or not. The thinner stool is probably from too much liquid OR to many foods that don't bulk the output? I think the Imodium helps w/ frequency by slowing things down so that CAN affect consistency but I would try more diet related stuff for the consistency. I'm a HUGE H20 drinker and had to slow down after the 2nd sx.

[@murphyp4537]

God bless u

[@MrPassword48]

Thank you so much for your video, I have very recently been diagnosed with PSC, feeling very lost and unsure of what is best to do to help the disease. Some websites can very daunting with the information and stories they provide but your video help to answer a lot of my thoughts and questions. thank you again.

[@UCandPSC]

+lisa jane Hey Lisa! Thanks you for reaching out! And you are correct...most of the information out there IS very daunting. I remember crying MANY times from reading things on-line and feeling like I had just been handed a death sentence. I just had my "annual" liver MRI last week and meet with my Hep next week to review. I hope you are doing well! :)

[@UCandPSC]

I know! I think about her often! Love you too my Inspirational Cousin!

[@blinky1369]

I'm getting ready to start the whole colectomy process and watching your videos have answered so many questions. I too have PSC which I had symptoms of before the UC was diagnosed, but was officially diagnosed 1 year after being diagnosed with UC. My question is my surgeon said that people like us develop "pouchitis". Have you heard anything about this or have you had any issues with this (so far)?

[@UCandPSC]

Hey Blinky! I'm SO glad that the videos have helped! That was my hope when I started them...:)! There's not a lot of space allowed to type here so if I don't answer your question completely, hit me up at [e-mail]. Your surgeon is correct about the pouchitis. ANYONE w/ a Jpouch can develop it but it seems that those w/ PSC have a higher incidence of it...lucky us! It's basically an inflammation of the pouch that is usually cleared up w/ some oral anti-biotics. So far (now don't jinx me!) I've haven't had any issues of pouchitis that I know of. The symptoms can be: increased frequency, increased liquid out-put, bleeding, cramping...sound familiar...LOL! There has been some research that taking a probiotic consistently (I take a prescription version as I think that the research was conducted w/ this kind but don't quote me. I know that some of the OTC ones aren't potent enough.) can decrease the chance of developing pouchitis. I take VSL #3 in powder form and mix it into an applesauce cup every morning. Once again, like the UC and the PSC, they aren't exactly sure what causes the pouchitis. I was concerned about this prior to surgery also, but now that I see how my life has changed, I'm glad I took the risk...of course I'm saying that without having developed pouchitis so far...LOL!

[@blinky1369]

Thanks for the input! When I was first diagnosed with UC the doctor put me on the VSL to see if that would help along with another anti-inflammatory but after only a few months I started right back to where I was before I was diagnosed. But I will definitely ask my gastro about the VSL and possibly starting back up on the probiotics :) I mean they can't hurt right? And on another note for the PSC I know you mentioned on the groups and boards about the Urosdiol helping with PSC, It really does help! I had elevated enzymes for 10 years before they finally chose to do the biopsy and they put me on the Urso right away. Finally after 4 years of the medications my enzymes are only 5 points away from being back in the normal range. I would HIGHLY suggest talking to your hepatologist about getting started on it.

[@sensboy1]

I've had my j pouch for almost 2 years now and like you I've had chronic pouchitis all that time. I've been on antibiotics and also Entyvio. Recently I've had HORRIBLE itching and sure enough the doctors found something strange in my blood test that indicates potential PSC. The MRI didn't show any PSC and my liver is functioning at 100% at the moment. Thank God. But the doctors will monitor me closely andI've been prescribed cholestyramine to help with the itch. I just wanted to ask you if you've also had severe itching and how's your PSC doing today?. Thanks.

[@UCandPSC]

Hey there! LUCKILY, my PSC has been stable since diagnosis in 2009. I've met w/ a few specialists and they seem to think (at least at THIS TIME) that I'm one of the fortunate souls who HAS the disease but will most likely die WITH it and not FROM it sometime LONG in the future...LOL! Mine was diagnosed through liver biopsy after elevated liver enzymes. I've also never had the "itching" although I have heard that intense itching, especially on the palms and feet, can be d/t "liver issues" w/ bile backing up. As long as you're being monitored by some knowledgeable people.

[@aceofspades66661]

Do u feel your j pouch feeling up with stool?

[@UCandPSC]

I wouldn't say that I can "feel" it filling up w/ stool but I CAN tell when it's time to go to the bathroom which I translate to the Jpouch filling up? Hope that makes sense?

[@aceofspades66661]

U get that urge like u did when u had a colon.

[@UCandPSC]

john wallace Oh no...not like that AT ALL! I have NEVER had "urgency"...just the "feeling" that I need to or could go to the bathroom. ALWAYS able to hold it though..NOTHING AT ALL like the urgency w/ colitis.