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Primary Sclerosing Cholangitis (PSC) - Online Support Group

Medicinal Cannabis

Good afternoon everyone. I have a question regarding marijuana and it’s purpose in health science. As we all know, cannabis has been used as a medicine for well over hundreds of years. And as well all know the legality surrounding the plant across the globe, and most certainly the different views government bodies have regarding the " well being" for society. Have or do people in this support group resort to this substance for any daily issues we battle with psc? And, what are your thoughts or personal experiences with cannabis with conjunction with psc? I’ve been diagnosed over 11 years now with psc, and truthfully I’ve been a user of cannabis for 8 years under the guidance of physicians. I’m not worried of political conservative, or liberal views, nor religious views and what’s right and wrong…just looking for genuine feed back from people who deal with psc.

Hi Triple R,

Thank you for posting this. I have been curious too about this issue. I haven't tried it, but I think it could be beneficial for some PSCers dealing with nausea and pain. How has it helped you? Also, I live in Washington state and I am thankful that if I want to try it, I can do so legally.

Becky

Hi crew mom,

I would like to say that I’m not endorsing pot or saying its safe to use and it’s the cure of all cures. I use it for a variety of issues that I encounter on a daily basis. Lower Abdominal pain, weight loss, URQ pain, and sleep deprivation. It also helps a fair bit with my colitis. My first 3 years of being diagnosed were just awful…my blood test were everywhere. I tried all sorts of pharmaceuticals for pain, Eventually my bathroom was just full of medicine. I first tried pot to control my emotions and dealing with the disease and the anxiety attacks that came with it. Drugs for this, drugs for that… Over time, all my blood work was coming back normal…as my doctor tells me, “better then a clean Olympic athlete”. I told him what I was taking, and from there I was prescribed medicinal pot. 8 years later, I still use and it works for me…and it’s not because of living a liberal life. It’s also because of my life changes (daily exercise, clean diet, and tons of water). Fortunately I live in Canada, where our laws are boarder line illegal (and if caught using you won’t be sentenced to life in prison for medical purposes) but I’m still able to “purchase” through government licensed dispensaries in British Columbia.
I find it’s much to difficult to listen to doctors pushing pharmaceuticals, and listening to commercials on television about drugs that do wonders…but 98%of the commercial is related to the dangers of that specific drug. Again, I’m not endorsing cannabis at all, just looking for feed back on personal experiences…good or bad.

Triple R

Does it help with itching???

Hi alix,

I couldn’t tell you if it works specifically to reduce or eliminate itching. I’ve always experienced mild, to moderate itching, for that I’m thankful. I do find that when I go in for a ercp, and my ducts are cleaned, or brushed, it reduces my itching a ton. A clean diet definitely helps with the itching.

Triple r

Everyone on these boards and my doctor also tell me that if thc is found in your blood you won’t qualify for a transplant. That being said I have been to a few mmj conferences put on by reputable organizations offering continuing Ed credits for nurses and doctors. They did not cover PSC specifically but they did cover liver fibrosis. If you have liver fibrosis you don’t want any mmj that is high in thc, you want mmj that is high in cbd’s. Thc will make fibrosis progress.
I have found that when I take a high cbd oil I don’t get stoned, which is terrific, and it helps with any pain o may be experiencing, plus it gives me that added benefit of sleeping better and not ripping of my skin from scratching. I only take it at night before I go to bed.

1 Like

Hi bird mango,

Thanks for the feed back. Ultimately, i have full confidence with the team of suegeons and the guidance that has been filtered to me. I only use in the evening, like many of us, I have a career, and a family to provide for. I never tried CBd version, but am aware of it. Question, does the one dose last you 24 hours of relief? The main reason I don’t use during the day is because of the high…so, when I wake up, I deal with it until 9pm and crash…sweet relief. Could you take it during the day and get relief without the high? Or does it impare you and not be able to operate a vehicle? Would you recommend a capsule or in its original form? I’d make the switch if that’s the case. Fortunately I specifically use this for my condition cause it works for me and don’t abuse it nor addicted to it.

Triple r

Works for anxiety, appetite, fatigue and who knows, maybe more. (Cramping, pain, sleep, cancer). Care does need to be taken if you are on a transplant list. There have been some sad stories because of it and it is too bad, since it is so much better than assaulting your liver with pharmaceuticals. There are many studies that it can treat cancer, too. As far as an itching remedy... unfortunately it has not been helpful. A careful diet and the cholestyramine seems to work fairly well for pretty severs itching so far.



detmsh said:

If they were to detect it in your blood, then you'll have to wait 6 months to get "clean", as with alcohol, and re-listing only occurring after the completion date. I assume some sort of class attendance would be required as well with the random testing throughout the period?

Hi detmsh,

Yes, you on the right track…depending what state, or country. But for the most part, you are correct from what I’ve been told.

Wow... excellent post.. I can ad to this discussion.... Pot/Weed has gotten such a bad and false reputation.. I am so THANKFUL for the use of it when I was first diagnosed because my sleep disturbances were awful. My doctor would not prescribe anything for me to sleep, also the itching was terrible in the begining, I rarely itch now.. I had lots of anxiety when I was 1st diagnosed w/ PSC in 2012...but I continue to smoke Pot during this time all my doctors knew I smoked it an NOT ONE of them told me not to smoke it..

I can say Pot is a miracle HERB... it really helped me sleep, relaxed me and it did help with the itching too. It should be legal because you can't get addicted to it, you can't overdose on it.. and pot has never killed anyone.. However alcohol is legal & it does damage to the liver & it kills people..

I smoke pot through a pipe/bowl because I don't like using any forms of paper to roll it.. and sometimes I smoke it through a water bong.. which filters it.. But overall it helps an it will save you a s-it load of money in unnessesary pharmecuticals like anti depressants, anxiety , or pain pills..

so put gets 2 thumbs up from me.. Thank you Dr. Sanjay Gupta for doing an extensive expose' on marijuana & retracting all the negative things, & myths about marijuana..

Crixus



Triple R said:

Hi crew mom,

I would like to say that I'm not endorsing pot or saying its safe to use and it's the cure of all cures. I use it for a variety of issues that I encounter on a daily basis. Lower Abdominal pain, weight loss, URQ pain, and sleep deprivation. It also helps a fair bit with my colitis. My first 3 years of being diagnosed were just awful...my blood test were everywhere. I tried all sorts of pharmaceuticals for pain, Eventually my bathroom was just full of medicine. I first tried pot to control my emotions and dealing with the disease and the anxiety attacks that came with it. Drugs for this, drugs for that... Over time, all my blood work was coming back normal....as my doctor tells me, "better then a clean Olympic athlete". I told him what I was taking, and from there I was prescribed medicinal pot. 8 years later, I still use and it works for me....and it's not because of living a liberal life. It's also because of my life changes (daily exercise, clean diet, and tons of water). Fortunately I live in Canada, where our laws are boarder line illegal (and if caught using you won't be sentenced to life in prison for medical purposes) but I'm still able to "purchase" through government licensed dispensaries in British Columbia.
I find it's much to difficult to listen to doctors pushing pharmaceuticals, and listening to commercials on television about drugs that do wonders...but 98%of the commercial is related to the dangers of that specific drug. Again, I'm not endorsing cannabis at all, just looking for feed back on personal experiences...good or bad.

Triple R
1 Like

Hi Dennis,

I will state again, that I am not promoting the use of weed in any way. Obviously, there are PCs patients who resort to this form of medication and see the benefits in some sort of way. I don’t know if I would say that the cannabis is ultetmely the one thing that has slowly stabilized my condition. I firmly believe, having a balanced mental state of mind from the beginning has given me the strength to move forward with my life. I’ve always said that this disease has made me a better person, and there are so many individuals that have it worse. I don’t mean to offend any one by saying that. Yes, I deal with mental and physical pain everyday for the past 10 years. But surrounding myself with only people who have a positive approach in life really helps. Physical excersise is the most important thing I have done to my body and to keep or maintain a healthy mental state. If you crawl behind a rock, you will suffer, no doubt!!! A clean diet is the 2nd most important aspect I took control of. Regardless of your ethnic, or country where you live, it is imperative that you change your diet!! I don’t want to stereotype but man…if you eat fast foods for breakfast lunch and dinner, you will suffer no doubt!! Fried chicken isn’t that important America!! The more positive you do routinly to your body apposed to negative is key.again, I don’t want to offend anyone. I understand that there are PCs patients who are unable to participate in physical activity…but there are always alternatives…like medicine. Yes, I suffer from PCs on a daily basis, but I choose to take the appropriate steps to help my condition regardless of my situation. Weed is not the answer…a live donor, or a deceased donor is. I try and be an advocate on the promoting on live donar donations and converting people to being a donor once their brain is dead. This is the true battle we face ladies and gentleman…and care givers to children. We need to educate our communities the lack of knowledge there is regarding the gift of life…Stem cell and organ donations. I’m sure most people have heard of the story in Canada most recently regarding an NHl club owner who needs a liver. This man went public with his need, and over 2000 people reached out to help him. I think that is great! He has the right to try and save his life. But let’s wait a second and think…over 16000 people in Ontario alone need the gift of life in some sort of way. Will these people help them? Will countless children who have not yet been able to live a life like this individual has, have that chance? Or even have the chance to live as long as I have (37 years)? Things aren’t fair in life, that’s why we need to speak loud and educate…it always could be worse my fellow Psc’rs. Regardless of your current state, try your best to be a better person, and good things will happen.
Triple r

Hi Dennis,

The changes I made with my diet…sorry I forgot to touch base. Let’s put it this way, a litre of good quality olive oil can last me roughly 8-10 months. I eat a ton of fish, roughly 3 days a week, Turkey and chicken. None of my food is fried, and usually baked or bbq. I faithfully drink a minimum of 1.5 litres of water a day. But I also drink a ton of natual orange, apple juice. A drink called “bolt house” is really a life saver…look it up, I’m sure you can find a flavour of choice. Lots of veggies and fruit. Yes, I brake to temptation and have the odd slice of pizza and stuff. Stay away from all sugars if possible (my opinion). My diet may sound boring, but I’d rather eat lean, and stay in good shape. We all know some what the “patient manual” for a liver transplant…health and body fat is a factor. It’s never the same in most cases. I know a friend who had a successful liver transplant. He was also taken off of the list as well…every story is different, including doctors, states, countries. NO Alcohol at all!!! Even a single beer isn’t worth it on a hot summer night. Take good care of your body. Every small change is a huge win for PCs patients. Hot yoga will clean anybody’s person. Yes, it takes ton of energy, but once you adapt and build energy, you will find you feel better physically and most important mentally. I’m not a tree hugger trust me (pot smoker, yoga lover, clean eating), I just take the proper steps as I go along. Your doctor won’t tell you to speak to a dietitian (pharmaceuticals are the answer),I will tho. A dietitian will help eliminate unessasary pharmaceuticals in my opinion. And you only need a hand full of appointments to make the change. Look at it this way…8 of 10 Americans are on at least 1 form of pharmaceuticals. I’ll only resort to it if I need to(anti rejection pills ect). Yes, funds are sometimes hard to find to pay for these luxuries…but is it worth it? Yes it is…

Hi
Can i just ask, how are you getting on at the moment.

I have recently looked into the above and just wondered how you are 4 years on.

Recently diagnosed and i do believe food is a really important medicine. Also i do know several people who have had good results with other illnesses.

Kindest regards

Hi Debra - i hope you find this well.

I’m sorry to hear about your diagnoses. Ive been in fairly decent health the past 4 yrs. I found that eating a proper diet is has helped me.

Kind Regards

Romeo