I wonder if I could gently invite a discussion up on this topic?
I'm pretty sure that I've lived all my life with low grade PSC without knowing it, because when things were really bad with me about 5 years ago and it was diagnosed, I recognized that the pain was familiar - just not to such an excruciating degree.
However, some big things were going on in my emotional world at the time of this flare up, which happened in my early 50's.
I was in the process of having flashbacks, nightmares and memories of some deeply traumatic material from my childhood.
My mental attitude during this period was one of extreme disgust and horror. That fits with how gall and bile are often referred to in a metaphorical context (eg Shakespeare).
Unfortunately , a lot of the medical procedures that I had to go through at the hospital were very triggering, and fed this emotional and physical agony.
Happily, with time spent on focusing on my overall well-being and recovery, things are a lot more settled now for me, and I've been able to tread the path towards more emotional peace, at the same time as feeling my physical health improving.
Does any of this mean anything to anyone else with PSC?
I can't relate to this personally but I do believe there is a relationship between the state of our mind and PSC, if not disease in general. One of the more obvious connections is stress, something you were going through in an extreme manner. The fight or flight mechanism is meant to help us but when it's triggered constantly due to high levels of stress, it wrecks havoc. It's well known fact that PSC lives in our body for years before rearing it's ugly head.
I am glad you are overcoming your past. I wish you the very best.
Thank you so much for your compassionate response to my post, Stephen.
I do my best to see if there's a choice available for me when it comes to getting stressed now. And if I see it (and can do it) I'll take an alternative mindset.
Wishing you well, too Stephen. Thanks for being there. I've appreciated your kind comments to others in the community.
Stephen Cox said:
I can't relate to this personally but I do believe there is a relationship between the state of our mind and PSC, if not disease in general. One of the more obvious connections is stress, something you were going through in an extreme manner. The fight or flight mechanism is meant to help us but when it's triggered constantly due to high levels of stress, it wrecks havoc. It's well known fact that PSC lives in our body for years before rearing it's ugly head.
I am glad you are overcoming your past. I wish you the very best.
I have noticed this link in my son, who is now 11 but was dx with UC and PSC last year. He seems to flare up when under stress - I know how stressed can a 11 yr old get? - but at least when he is worried about something ( a test a school, baseball game, etc.) I firmly believe in the mind body connection when it comes to disease and healing.
My doctors all tell me that stress and PSC are not linked, but I feel differently. Stress messes with the immune system which is messed up for PSC patients anyway. I twice had PSC flares while being under stress at work.
I have not yet had any major complication with my psc. But I can relate to your story with my year of dealing with UC and recoveries from my two surgeries.
Stress is tough on UCers, but UC to me means having a boatload of stress. During the year I had UC, I worked in a trafficy part of Atlanta (redundant!) Knowing that I was approaching stopped traffic when I could get at any time a two minute warning that I had to be on a toilet caused a lot of stress and worry.
I have read on several occasions that people who have/or had UC can get ptsd. I believe it, and think that may be an issue with pscers also once complications rear their ugly head.
Yes, the consultant I was seeing at the time laughed when I told him I thought there was a connection with what was going on for me psychologically and the symptoms I was having with PSC!
I told him that was my personal view anyway, and I was going to do all that was in my power to take care of my emotional well-being.
Our daughter, Ava, is also 11 and we believe that stress definitely contributes to her flare ups. Unfortunately, the more she has to deal with this diagnosis through tests, appointments, meds, supplements and general parental concern, the more anxious she becomes. It's a bit of a spiral and we spend a lot of time debating how to manage it. We've considered anxiety meds but haven't tried them yet. I do believe that stress management is a key to getting a handle on this condition. In fact, her diagnosis was made after a particularly stressful event sent her into severe flare-up.
More specifically, SJ, I'd love to hear about your experiences with your son We were diagnosed about 16 months ago (at 10) and have so far been on Immuran mostly. We used Urso for a while, but I took her off it once I became concerned that it was masking progression (and her enzymes popped up right away). We're in the process of getting into Dr Cox's study but also working with a bio-energetic specialist to try to re-modulate her immune system and cleanse her liver. It's a constant struggle!
Really hope your son and family are managing well.
SJ said:
I have noticed this link in my son, who is now 11 but was dx with UC and PSC last year. He seems to flare up when under stress - I know how stressed can a 11 yr old get? - but at least when he is worried about something ( a test a school, baseball game, etc.) I firmly believe in the mind body connection when it comes to disease and healing.
eogray - would love to connect offline and share experiences so far. My son is on urso and his enzymes have been in the normal range since he started on it. Dr. says that's the best we can hope for - but I questioned the Dr if that meant the disease was progressing more slowly - and she indicated if the enzymes weren't high - then he was doing OK and not progressing. Admittedly I haven't explored the Cox study or any other means of treatment. He's been asymtomatic for a while - so I guess waiting until that changes to react. I'm interested in the cleansing you mention.
eogray said:
Our daughter, Ava, is also 11 and we believe that stress definitely contributes to her flare ups. Unfortunately, the more she has to deal with this diagnosis through tests, appointments, meds, supplements and general parental concern, the more anxious she becomes. It's a bit of a spiral and we spend a lot of time debating how to manage it. We've considered anxiety meds but haven't tried them yet. I do believe that stress management is a key to getting a handle on this condition. In fact, her diagnosis was made after a particularly stressful event sent her into severe flare-up.
More specifically, SJ, I'd love to hear about your experiences with your son We were diagnosed about 16 months ago (at 10) and have so far been on Immuran mostly. We used Urso for a while, but I took her off it once I became concerned that it was masking progression (and her enzymes popped up right away). We're in the process of getting into Dr Cox's study but also working with a bio-energetic specialist to try to re-modulate her immune system and cleanse her liver. It's a constant struggle!
Really hope your son and family are managing well.
SJ said:
I have noticed this link in my son, who is now 11 but was dx with UC and PSC last year. He seems to flare up when under stress - I know how stressed can a 11 yr old get? - but at least when he is worried about something ( a test a school, baseball game, etc.) I firmly believe in the mind body connection when it comes to disease and healing.
definitely. would like that. Perhaps email me at eric_o_gray@yahoo.com and we can connect? Where are you based?
SJ said:
eogray - would love to connect offline and share experiences so far. My son is on urso and his enzymes have been in the normal range since he started on it. Dr. says that's the best we can hope for - but I questioned the Dr if that meant the disease was progressing more slowly - and she indicated if the enzymes weren't high - then he was doing OK and not progressing. Admittedly I haven't explored the Cox study or any other means of treatment. He's been asymtomatic for a while - so I guess waiting until that changes to react. I'm interested in the cleansing you mention.
eogray said:
Our daughter, Ava, is also 11 and we believe that stress definitely contributes to her flare ups. Unfortunately, the more she has to deal with this diagnosis through tests, appointments, meds, supplements and general parental concern, the more anxious she becomes. It's a bit of a spiral and we spend a lot of time debating how to manage it. We've considered anxiety meds but haven't tried them yet. I do believe that stress management is a key to getting a handle on this condition. In fact, her diagnosis was made after a particularly stressful event sent her into severe flare-up.
More specifically, SJ, I'd love to hear about your experiences with your son We were diagnosed about 16 months ago (at 10) and have so far been on Immuran mostly. We used Urso for a while, but I took her off it once I became concerned that it was masking progression (and her enzymes popped up right away). We're in the process of getting into Dr Cox's study but also working with a bio-energetic specialist to try to re-modulate her immune system and cleanse her liver. It's a constant struggle!
Really hope your son and family are managing well.
SJ said:
I have noticed this link in my son, who is now 11 but was dx with UC and PSC last year. He seems to flare up when under stress - I know how stressed can a 11 yr old get? - but at least when he is worried about something ( a test a school, baseball game, etc.) I firmly believe in the mind body connection when it comes to disease and healing.
I too believe that emotions have alot to do with it. The doctors often say that my daughter's blood tests etc do not correlate to the happy little girl they see dancing and singing. Even a couple Christmases ago when her blood pressure was 130/100 and she should have been complaining of severe headaches, she had spent the whole day making friends around the hospital by singing, dancing and playing. Even now they always say they look at her test results and look at her and it is like different children.
I truly believe there is a very strong connection between mental health and PSC. My husband has told me more than once he feels way more tired when he is stressed. So glad to hear you have been able to start down the path of mental and physical wellness. Good for you!!!
Thanks for your encouraging words, Lisa, and all others who've replied on this subject.
It has certainly shown me that I really can develop a practice of choosing whether I allow myself to get upset and troubled over something...or, if I can, take time out - albeit only a few minutes - to regulate the stress levels in my body.