Hello everyone,
I am very pleased to have stumbled across this board and it’s fountain of knowledge and very friendly and helpful users. This is my first post so I apologize if I rant too much. I was diagnosed with Ulcerative Colitis 10 years ago when i was 15 and only a year ago was I diagnosed with PSC. The doctors figure I probably have had it for years due to my ALT and ASTs being super high and just never properly checked out. The I have had a few pretty bad UC flares and each time i’ve had to add a new medication. At first it was prednisone for the flare and then using Imuran, next Humira and Imuran and now i’m on Remicade. I was on Humira for 2 great years and now Remicade for the last year and a half which have been awesome. As a 25 year old who has just wrapped up college but is still very in the party stages I have had a very hard time staying away from alcohol. Especially after my diagnosis of PSC, I had a hard time dealing with it and figured all hope was lost. I didn’t see any light at the end of the tunnel and drank more often and heavier because I assumed if it took off an extra year or 2 from the 10 year average big whoop. It took me quite some time to finally come to the realization that there is hope. I read a lot of other members stories of living for years with no symptoms and have been reading about some hope with Anti-histamines and Vancomycin. These have made me realize that I need to do everything I can to stay healthy as possible in hopes for a possible cure to come.
My drinking has now cut way back to absolute max of 5 drinks over a weekend, I know this is still probably too much but i’m trying my best. It is very hard being surrounded by it at this age, with all my friends wanting to drink and go out all the time and I have yet to tell many of them what is actually going on with me. However, I am eating way healthier, whole foods and in the gym lots too. I have noticed a big increase in energy now when i used to be so tired all the time. I’m hoping to keep on this path and hope to see more light on the road ahead.
Couple of questions for you all:
- Is it normal to get some bad cramping in the upper right abdomen? It can hurt quite a bit and last over night but i only seem to get it every other month or so.
- Does anyone else have their ankles and feet swell up with red rashy patches when they go through a UC flare or maybe it could be PSC?
Thank you all and sorry for ranting!
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Various types of pain in the ruq is quite common in psc.
I never had those patches you mentioned with my uc or psc.
I am glad you have both cut way down on the drinking and working out. Keeping as fit as possible will pay dividends with your psc.
No worries about the rant. That’s what forum is for.
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Hi MattyGerm, I agree with Jeff…rant away.
I have had several episodes of URQ pain over time. For me, I determined that it was related to caffeinated soft drinks. When I cut them out, it stopped happening. So, I don’t know…
I have had some foot and ankle swelling and some small areas of red, dry skin a few times. I’ve thought it was PSC related?
I’m sure that it is all very hard for you. Especially, dealing with it all at such a young age. I can tell you that it’s not great at 50 either. LOL I’m sure happy that you are feeling a little more hopeful! One of the only things that I can tell you for sure is that none of us ever know what might be out there waiting for us?! And we rarely know when that little bit of extra effort will make all the difference. There is a great deal of
pain in this life, but there is WAY more beauty. It is all around you. 7 or 8 years down the road you might find yourself willing to give anything for 2 more minutes (much less 2 years) with someone that you love more than life itself.
I have a real good friend of 22 years. He is a PHD level geneticist. He is also a very spiritual, Rasta/Taoist kind of dude. A really brilliant guy. He called me a week or two ago to check in and said something very profound. (To me at least.) He said this based on all of the plant biology/genetics science that he has spent his whole life studying, as well as the spiritual endeavors that have been a huge part of his life. He said, “Hey man. It’s ALL magic! Nothing BUT miracles!”. I needed to be reminded of it that afternoon. Now, I’ll tell you the same thing. “It’s ALL magic! Nothing BUT miracles!” Believe it.
Doug
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I don’t have PSC but I have had chronic migraines for 30 years with drinking being a huge trigger. I gave up drinking 90% at… well, we’ll say 21 but I was in college in America so it might have been younger >>>WinkWink<<< … and I gave it up 100% at about 24. It’s just not worth it.
What you can do to keep your non-drinking to yourself is drink “near beer” or what used to be called 3.2 beer. I believe O’Doul’s is one in America. Basically the beer taste and look without the actual booze.
Another thing you can do is switch to fruit juice “mixed” drinks. A bar tender can make a juice drink that looks like a tequila sunrise without the tequila. That way you have a “grown up” drink without the booze that could be a negative for you and you’re the only one who knows.
azurelle
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MattyGerm.
At 40 I got PSC and bad UC which has resulted in the removal of my entire colon.
Anyway here in Austalia often business is very much linked to “network meetings” which either see your promotion chances or business opportunities rise or fall. So while you may be only 20 the problems are the same as you move through life. I elected to be the “skipper”. I offered to drive mates all the time and here in Aus if you do the right thing and drive your mate while they hit the gas, then they pay for your nights soft drinks. So you still get to hang with the boys, but you are sober, the police love you and your mate appreciate a safe ride home. I also used to insist they by me drinks in a spirits glass (soda and lime) and then everybody thinks your drinking vodka anyway.
After a few months its not a problem and then next thing your a non drinker except for the very rare occasion.
Tough as a young buck, but remember you want to live long enough to embarrass your grand kids.
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GazfromAus – you make me chuckle. I’m always the designated driver with my group here in America and often that gets me free drinks from the bar tender. Lemonaide, Sweet Tea, Soda. It’s definitely not a bad thing to be the driver. And, it made me recall a great joke about being the designated driver:
“When you’re the designated driver, have fun with it, drop your drunk friends off at the wrong houses.”
azurelle
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As someone who’s also in their mid-twenties, my heart goes out to you. Having a chronic illness can make socializing difficult. I follow a strictly low-fat diet to avoid getting bad RUQ pain, and when I’m the only person eating a salad and the rest of the group is eating burgers and fries I feel like such a jackass (even though I know no one really cares that much). I used to love eating fatty and indulgent food, and it makes me feel bad to be the girl who only eats salads.
Social drinking is a huge challenge for me. It seems like it’s inescapable at our age, plus it’s a super easy way to blow off steam after a long day. I would love to be able to drink without worrying about my liver like I did before I got sick. Some days I feel really resentful toward my body and the changes I’ve had to make.
But the way I see it is that now that I’ve got this illness, there’s things I can and can’t control. I have no idea how fast or severe my illness will progress, but what I can do is make the diet and lifestyle changes that will increase my chance for a functional life. You mentioned working out and I think that’s so important- personally helps give me more energy while alleviating some of the anxiety that I deal with on a day to day basis. And as for drinking, yeah it’s a good way to destress and socialize, but I try to keep in mind that there’s a ton of other activities I can do to fulfill those needs. And if I have to go out, I can make myself DD so that I have to be limited to one (or two) drinks.
We’re not perfect, and as humans we’re bound to slip up. But we’re doing our best, and that’s all we can do. I wish you the best of luck!
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Thank you for your kind words, Doug. I appreciate hearing your own story and the motivation you gave me.
Thanks Azurelle, I’ll try some of those drink ideas you’ve given me. Might be able to find more realistic looking near beer.
Thanks, Gaz. I appreciate the help in coming up with ways to keep the drinking down.
It’s nice to hear from someone who’s currently in the exact same boat. I feel the same being the one who’s always worried about whats in the food and having to ask what a friend may be making for me. It feels like i’m just annoying everyone all the time.
I also get a lot of the same days where i’m just mad at my body for what I have to put up with. But that only makes things worse so usually I can snap out of it pretty quickly.
I really wish i could drink more because I feel like I miss out on a lot and try to avoid drinking situations now and don’t get to see my friends as much. But I feel like i’m making a lot of progress and getting a lot better. Putting all my efforts and extra time towards the gym and making something positive out of it. Which is just what I need to do because this is the hand that i’ve been dealt in life and I need to play to it. (If you are a card player you’ll get this lol) .
It’s also nice to hear that some others indulge in a little bit of alcohol now and the. Thank you for your story and giving me someone to relate with.
With a desire for balance on this topic, I want you to understand that PSC’s eventual end leads one to Stage-4 cirrhosis. Any continuation of the consumption of alcohol only accelerates this process as the disease progression intensifies. It would be very wise to work on completely eliminating the intake of alcohol in any form as soon as possible. No social relationships are worth your life. PSC is a very nasty disease that eventually will lead to death without a transplant. For some, that is many many years down the road, for others like myself it was 4 years from diagnosis to transplant and I have never consumed alcohol in my lifetime. So for those who do, you can see that this progression could be even quicker. I’m sure all this is a struggle for you but I do encourage you to change this habit as soon as you can. To give you a bit of perspective, here’s a photo of my liver at Stage-4 when it was removed at my transplant. I am not trying to frighten you in any way, but I do want you to see this in perspective. Trusting you have a good week to come.
Mark
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And for a bit more balance – there’s absolutely nothing that you can do drinking the you you can’t do while not drinking. Drinking isn’t what makes the event or evening fun, the people are.
And, this makes me sound like an old fart, but drinking out is expensive. Save the money you would have blown on drinks for something amazing.
azurelle
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Mattie I’m very concerned about you. I’ve lived with PSC for 17 years. I gave up drinking soon after diagnosis and even though I was a light drinker I still miss it. But, there is probably nothing that is worse for your liver than drinking alcohol. Five drinks on the weekend is a very big load on your damaged liver.
I found the best way to live with PSC is to treat yourself, especially your liver, with love and care. Take care of your liver as you would a child or a beloved pet. You wouldn’t feed them toxic drinks and if someone pushed you to do so, you would feel fine, not embarrassed, saying no thanks.
Because you’re young, life has so much to offer you that’s fun and exciting even though you have PSC. Please think about what you have to live for and those you care about instead of speeding your death by liver failure. Remember it is hard to get a liver transplant. Active drinkers cannot qualify and no alchohol is allowed after transplant.
Please take care of yourself and your liver.
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Hi Jennifer,
Thank you for your concern, I will do my best to keep my alcohol consumption as low as I can.
Thank you,
Matt
Matt,
Please keep in mind that there is a 6-month abstinence requirement before they will even consider you for listing for liver transplant if you are consuming alcohol. They will be able to tell from blood tests whether that is the case or not. When I was listed in January, 2015 my MELD was 12. By July, 6 months later I was MELD 36. If I had been a consumer of alcohol and had to go through the waiting period requirement, I would be dead today.
Not even one drop should be acceptable in your mind as a liver disease patient. With PSC things can rapidly move and you may not have time to change your life style then.
Just some food for thought. I wish you the very best as you go through these struggles.
Mark
