PSC and possible bile duct blockage

Posted by sandyjr @sandyjr, Feb 15, 2020

My daughter has Crohn’s disease and PSC. The Crohn’s was in remission for about 20 years, but flared in the fall of 2018. Things have not been good since then. Also around this time her ALP started to rise and after many tests she was diagnosed with PSC. In August 2019, she had surgery to remove about 8 inches of her intestine. It has been a struggle since then. The surgery and recovery from that were easy compared to what she has been dealing with. She is on several medications. Most of her hair has fallen out...she itches all the time...she now has gout from her knees down...she is very tired...and she just got results from her last blood work that her ALP had risen by about 30 points to 285. I think one of the faciliatators had suggested that she get her iIg4 tested. She mentioned that to her doctor who told her that an iIg test was done, (but it was not iIg4). The doctor seems concerned that her bile ducts are currently being affected...she is not sure if they are internal or external...she is going for an MRI this coming week. Also, her husband has been laid off from work and her health insurance ends March 1. She has a part time job at a B & B and her boss told her if they gave her stents in her bile ducts that she would not be able to work anymore...I assume there...my daughter was so upset, she did not ask why. She has a very stressful life (husband a recovering alcoholic/drug addict). I know the stress could be affecting the Crohn’s, but could it be affecting the PSC?

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Justin McClanahan, Moderator | @JustinMcClanahan | Feb 16, 2020

Hello @sandyjr. I'd like to invite a few members you connected with in the following discussion, https://connect.mayoclinic.org/discussion/psc/. @sandyblair, and @jacinta shared their experience with PSC in that discussion, but may be able to share a bit more specifically about whether or not stress affected their PSC in any way. You also met mentor @rosemarya. Rosemary, you've mentioned in the past on Connect that you were devastated to receive your PSC diagnosis because you actually weren't experiencing any symptoms. Once you were diagnosed, did you ever experience symptoms before your transplant? Did stress make anything worse for you?

@sandyjr, your daughter is dealing with a lot of external factors besides the difficult diagnoses. You'd mentioned in the past that your daughter was in a difficult situation with her husband, which now sounds as if it has not gotten better as he is now also laid off from work. Has your daughter sought any other forms of insurance to prepare for March?

Rosemary, Volunteer Mentor | @rosemarya | Feb 19, 2020

@sandyjr, I had PSC. It is a stressful and frightening diagnosis. I would say that PSC is a major cause of stress, not that stress causes PSC. The cause of PSC is not known and researchers believe it could be related to environmental and genetic factors. It has been well established that stress does play a major role in our health. My experience with PSC is that it is much like being on a roller coaster. I have not heard of hairless being associated with PSC, but that does not mean it can’t happen. What are the doctors saying about the hair loss?