Just diagnosed

Welcome New Member Introductions
1

Hi, everyone, I’m new to this group. First of all, I’m the mom not the patient. My son who is 24 was just diagnosed last week. This came out of left field for us. We havent even seen a Hepatologist yet. We have an appointment on June 16th at Weil Cornell in NY.

Background: my son was diagnosed with UC when he was 6 years old. He was more acute than chronic when it came to flare ups. Had about one a year, usually in the fall. He had his last major flare up when he was 14. It was the worst one he ever had. Was on asacol for many years and then they added 6mp. Fast forward to last year. It dawned on me that he had not been seen by a gastro for about 3 years and I figured he was overdue for a colonoscopy. As luck would have it, he started a flare the night before. Oh, he stupidly refused to take his medication around age 16. He said he was fine and didn’t need it, wrong! Anyway got him to see a new doctor and they did the usual battery of tests. They found that he had a number of precancerous polyps. So off to the surgeon. Jeff had his entire large intestine out in June 2014. We were under the delusion that this would cure his disease. Had another surgery to connect to the j-pouch and then the problems started. In March, 2015 the decision was made to take him off the j-pouch for 6-8 months for complete bowel rest. Last week he calls me and tells me he is jaundice. Off to the surgeon. He orders tests, etc and put him back in the hospital. After having a sonagrm, MRI, and that endoscope, they cleaned out his bile ducts and found evidence of liver changes. PSC. Why in everything I read about UC is this never mentioned? I feel like I’ve been punched in the gut. So, here are my questions. What is done to treat this disease? How does it progress? I’m so confused, I don’t know where to start. How do I know when the disease gets worse? What should we expect? Like I said, I’m so confused. What ever information you folks can give me, I’d so appreciate it. It’s been such a stressful and intense year for our family. We feel like we can’t plan anything because we never know how Jeffrey is feeling. Our life has been on hold for so long, all revolving around our son. Will we ever be able to live again?

Thanks, Jeffsmom

2

Hello… I just sent my daughter an email explaining what it’s been like living with PSC sincer childhood, and what life is like now at age 54. Well, I probably was gentl with my explaination so as not to worry her too much. But, I find myself wanting those around me to know more these days. I was diagnosed with PSC AT AGE 26. Had colectomy at age 42. Told i was cured. Had no idea why i was periodically sick with increasing severity, and frequency. I didn’t find out about PSC diagnosis until March this year. No one looked for PSC,though I had many evaluations, and just thought I needed to do something better in lifestyle. I imagine, and know, some around me were tired of seeing me sick. I got so I just isolated more & more with sick days,severe fatigue, or no emotional energy for others, I quit planning when I got tired of forcing myself to show up. After getting over the shock, and sadness, of diagnosis, io desperately sought ways to treat it, or feel better, prevent complications, slow progression. No one gives false hope of cure.
I’d love to hop in the car, and take a trip to see children, and grandchildren. But sadly, I don’t trust my driving safety due to foggy brain, energy, or comfort long enough.
I’m glad to know what it is, to not feel left out, for having a reason to isolate rather than feeling something is socially amiss with me. I mostly lived in denial of illness with no label, and focused on capitalizing the not so sick days, and energy.
It’s hard to explain the many symptoms not obvious to others, or the feeling. As a mother Whose child went through cancer treatment for over a year, I know how painful it is to watch your child seriously ill. She got mad at me, and shut me out for a long time, through her wedding, and first childbirth stating “it wasn’t about me, she was going through it.” It was a long time before I understood what she meant. I was paralyzed with fear for her at times, and driven other times. But, I never just sat, and let her tell me her experience of it.
I’m sorry you, and your son, face this now. As Stephen says diet can make a lot of difference to how good, or bad, your son feels. I encourage you to focus on learning to make the tastiest vegetable dishes you can with plant based proteins. Easier on the liver, and UC, and should help lesson symptoms. Learn how to eat out where you can get this these type foods. Always consider where the bathrooms are, and space to rest, and come, and go socially as he feels inclined. Give him permission to describe how he feels. Let him forget about it as he can. Accept this is part of who he is, as he has to cope with it as part of his life every day. Sometimes, I felt angry, other times cried, on good energy, and minimal symptom days I forget, and socialize happy to feel normal, I pray for your, and his, peace of mind, strength, and comfort.

3

Another thought, since he is so young, and already with severe complications, he’s not enjoyed many experiences of living. Perhaps yous share, and support well, acknowledge your interest in supporting not only his tough times with the condition, but want to support his enjoying life experiences. Maybe he will share his hearts desires. People can be amazing in their personal power, especially when well supported. I knew a young man who became quadriplegic due to an accident. He became a lawyer, with wife, and young children. Not the same type condition, but many complications, and barriers. I’ve seen many amazing things with people. There’s always hope, and living even with adapting to very difficult circumstances.

4

Hi,

I had uc and then psc which necisstated a liver transplant. It has been 11 years and I have not had a return of the psc.

I hope this little bit of news will give hope to you and tour son. The one thing you both will need is patience. I am in your corner.

Mary

5

Hi Jeffsmom, I'm sorry to hear about your son's diagnosis. Your feelings right now are completely understandable. The uncertainty that surrounds this condition can come as a shock but what I will say is that try not to get too drawn in by the statistics online. Knowledge is key to understanding the way this condition progresses and the symptoms to look out for, as described by Stephen above, but at the same time try to assume the worst.

I have had UC for 17 years now and was diagnosed with PSC last year. I can relate to some of what you say because my UC too has tended to be more acute then chronic. As a result I too went through the not eating meds stage (still do if I am honest) but last year was a wake up call. Like most newly diagnosed patients, I took to Google to find out what I had and what to expect. I understand the symptoms to come better now but until I experience them for sure I guess I can't comment on how it will feel. I spent a lot of time with myself last year trying to figure out what I wanted in life and how to prioritise it but in the end I have come to the conclusion that if I keep pondering over the what if's then I will likely stop living the now which I don't want to do. I would encourage to not give up on the now in fear of tomorrow. Only Jeff can tell you better how he feels. No doubt he needs your support during the flare-ups but don't fear making plans for when his condition settles. And remember you need to look after yourself too.

Lastly, I summarised the findings of my ' Googling' in a document last year and posted on my page. You are welcome to have a read via the following link:

http://forum.livingwithpsc.org/profiles/blogs/primary-sclerosing-cholangitis-a-summary

I hope it helps.

Stay positive and keep smiling... we're here for you! :-)

6

Jeffsmom-

I am so sorry about your son's diagnosis, and previous health struggles. This simply stinks and is such hard news to handle. My son was 16 when diagnosed. He's doing very well at the moment, graduated high school and is off to university in the fall. He's a competitive swimmer and while he hasn't been able to train with the intensity and frequency pre-PSC, he just competed this weekend and had two personal best swims. Life does go on. There are hard days, hard months, and there are fairly normal months when things seem ok and almost as though he didn't have this. I am well aware that this could change at any time and that there will be tough times ahead. I so remember wanting somebody to tell me how to handle this horrible news when we first got it. Nobody could. Be kind to yourself as you come to terms with this diagnosis. It won't always be the shock that it is right now. As far as treatment, we decided to give the vancomycin approach a try. So far so good - LFT are mostly normal and my son is mostly asymptomatic. His main symptoms are periodic fatigue and nausea, but he was on immune suppression for a while, and there's a possibility that was a side effect... we'll see. Our thought was that while the evidence on the vanco is slim, it at least offers the possibility of a positive outcome, or a chance to slow down the progression while researchers continue the search for a cure.

7

Everyone, I can’t thank you enough for all your words of wisdom and support. I can’t wait until we see the hematologist. I do have another question. Since my son was jaundice when he was diagnosed, what stage of the disease is he? The gastro folks lead me to think it was very early in the disease. The changes they saw to the liver was minimal,but he did need his biles ducts cleaned out. And what is a flare? What symptoms will he have and what do I watch out for? I figure a summer of hamburgers and hotdogs are out as well as ice cream and anything else fatty, am I correct. Oh, I’m not liking this at all. I must have been so whipped out Sat. Night because I slept for over 12 hours, getting up at 12:30 this afternoon. I have t done that in a long long time!

8

Hi everyone, thank you so much for your words of encouragement and support. I feel like I’m not the only one on this bumpy trip. Move been so overwhelmed as you all know and I just want to bury my head in the sand. Last week she went to NY to meet with a liver dr. News was promising. They feel he is at the very beginning of the disease. His gall bladder is slightly enlarged, his numbers have been improving. Surprisingly they are more worried about his IBD issues. He developed a fistulia in Nov/Dec last resulting in being on TPN for 8 weeks which may have caused the gall bladder to act up. But that seems far fetched to me since he has been off the TPN since March. And it didn’t get rid of the fistulia anyway. So I’ve made appointments with a GI doctor and and colon/rectal surgeon at Weil Cornell. We are scheduled to go to the Cleveland Clinic for these issues but the liver doctor feels they can handle the situation with out having to go to CC. I hope so. Anyone in the NY area that knows any of these folks?
But overall, I felt put at ease by Dr. brown. He felt it was not as bad as it sounds but they are going to keep a good eye on him. We go back next week to see the surgeon and GI folks, so I’m sure I’ll get even more information at that time. In the meantime, they put my son on some bile duct medication. I just hope he takes it!

So the saga continues use. I should write a book. If this was anyone else, I’d swear they were making it all up, that no kid could look so good and be so ill! Thank you, all. I’ll keep you posted.