Hi everyone,
I’m a 36 yr old woman that was diagnosed with UC and PSC in my teen years. In the past 20+ years I’ve had various flares and remissions of UC, but I never experienced a single PSC symptom till earlier this spring in my last trimester of pregnancy. Healthy baby boy was induced at 36 weeks and I try to remind myself of that blessing everyday. But for me I’ve progressed from bilirubin in the normal range to now up to 27 just in 8 short weeks. Doctors are telling me I need a liver transplant immediately. Meantime I am trying to survive life as a
PSC patient while caring for a 2.5 yr and 6 week old baby. I am FULL of questions.
1:has anyone else out there had PSC flare during pregnancy and then managed to achieve remission? I want to avoid or at least delay transplant if possible.
2:has anyone with a jpouch undergone liver transplant? How does this change complexity of the transplant surgery, and quality of life post Tx? Do flare ups of UC and PSC increase or decrease post Tx?
3:does getting a liver transplant eliminate my cholangiocarcinoma risk?
Thank you for your input…I’m on a crash course to learn everything quickly
I noticed that you haven't received a reply on your post and unfortunately I can't answer your questions. But I do know that there are a lot of women on the PSC Partners Facebook group that might be able to help you. You might want to post it there.
I hope you are doing well and congratulations on your new baby.
Hi! I am 30 and have been living with PSC for 13 years now. I became pregnant at 25 to my miracle child. The pregnancy was horrific. Gallbladder removal at 16 weeks followed by an ERCP. That is when the pruritis started. The pruritis has been so bad for me that I have open wounds on my whole body. I use a fork to itch my feet. I now take copious amounts of medications to control the itching. They work some but the itch continues. I literally have been itching For 5 1/2 years.
There really isn’t anything else you can do to hold off a transplant. Yes a transplant will eliminate the risk of liver cancer. I am currently waiting for a liver with a MELD score of 22 which I wish were higher because my current life is debilitating.
So your question of remission after pregnancy did not happen for me.
With a bilirubin of 27 and a six week old I would imagine that it would leave you the same boat as a transplant. There are so many improvements to transplant care that I willingly trust my doctors.
I hope this helps.
Hello… I will try to add a little to your knowledge, but I have questions to help me understand your clinical picture. First, I’ll tell you mine, so you can consider, anything I share against your circumstances. I’m 54,diagnosed officially with PSC a few months ago, and UC AT AGE 27, with JOouch at age 42. I’ve had 2 children, and do not recall flares during pregnancy. But, do recall “flares” as early as 11 years old with gradual increase in severity over the years. I’ve had a few episodes of pancreatitis, and failing liver function…each time improving with bowel rest (not eating, and rehydration, and avoiding fat, and animal products. I’ve itching the past three years, and the GI symptoms all worsening when I consume those foods, and subsiding within days when I resume the diet restrictions. My PSC has created strictures throughout the small bile ducts in the liver. Although technically UC isn’t present withoutncolon, there may be systemic aspect of UC. My personal opinion, is PSC, and UC, flares… systemically feel the same to me.
Now, for your situation. Where is the damage of PSC SHOWING? You had ERCP, does that mean you had a dilation, or stenting of large bile ducts? Has your clinical picture improved since baby born? Have you been treated for infection from pooling bile? Are you nursing, or using birth control? Have you had any immunosuppressants such as prednisone? What is your meld score? Are you on transplant list, or begun the transplant work up? Do you have relatives willing to donate?
Have you sat down to talk with a transplant nurse?
your just 6 wks postpartum, and your body is not yet back to pre pregnancy state. This is something to consider. And, do you notice change in symptoms with diet change? I would include OBVIOUS/GYNE Specialist consultation.
transplant involves anatomy above JPouch, and should not effect complexity. Though you could discuss with GI surgeon who did surgery. PSC can occur in new bile ducts post transplant surgery for a percentage of people. With two little children the risk is far more worth it. Your question about UC flare ups has me curious as to what you are experiencing as UC flare ups post colectomy. Is it symptoms of generalized autoimmune inflammation? Or infection, or both?
Cancer can occur in different areas. It’s not predictable, and is a separate issue in deciding on transplant. If doctor says you need transplant immediately to live, that is your only priority. Again with two little children, unless your condition can improve, what choice do you have… The doctor has based that recommendation on specific facts… You can get a second opinion, the doctors could help you do that quickly.
You could call the Mayo clinic? Any input you get here, can help you more with posing your questions, and getting support. The questions must be discussed with doctors in context of your complete clinical picture. My prayers are with you for peace, and a good support system of family, friends, and doctors.
Hi Jesslin007 - congratulations on the birth of your baby.
I was diagnosed with PSC at 17 with UC shortly thereafter. I'm now 32.5 and had my little miracle baby 12 weeks ago. She was delivered early at 34 weeks 4 days as I developed pre-eclamspia with really bad edema, hypertension and very low albumin levels. I became much worse after delivery - albumin got down to 13, I had bad ascites, bilirubin went up to low 50s and all other LFTs worsened … but I am slowly getting better. After albumin infusions and a short stint on diuretics my albumin started to improve, the ascites drained on their own through my c-section scar, and my LFTs are a bit better. You're still only 6 weeks pp so give it more time. I am on strict orders to get plenty of rest, sleep and lots of protein. I know that's very difficult, especially with a newborn and a toddler, but do you have family or friends that could help out? I'm lucky that my mum has moved in to help as it's hard enough to get a moment to eat let alone a nap! But it's really important you look after yourself as well.
In terms of bilirubin levels, mine have been in the 20s/30s for a long time (currently in the 40s) and I'm definitely itching a lot more but my GI wants to give my body time to recover from the pregnancy before doing a gastroscopy/colonoscopy and any other necessary treatments. Historically, I have had a stent put in once for a week after my first bad itching episode in 2008, and balloon dilation a couple of times. I do not yet need to meet with the liver transplant unit.
Pregnancy takes a huge toll on our bodies even if we were "normal healthy" women so for us I think it takes a lot longer to recover. I would ask your doctor to explain exactly why he believes you need an immediate transplant and, if you haven't already done so, I would contact your nearest Mayo clinic … unfortunately there isn't one here in Australia!
I wish you the best of luck and hope your health improves soon.
Hi everyone- thanks so much for your comments and sharing your stories with me. I am writing you from Johns Hopkins Hospital, on day 2 recovery with my new liver! Beanie708 and Windward you were so right that I should trust my doctors recommendation if it’s transplant time. I already am feeling worlds better today with my new liver.
So it ended up that in the short week since I wrote this initial post my liver went into massive failure mode. I got listed on June 5 with a MELD of 33 and was hospitalized June 17 in my local hospital because my INR rate had climbed to 8 and my doctor was worried about my falling risk at home. By Then my MELD had reached 42. The very next day, June 18, Hopkins called with a liver! I was helicoptered over to Baltimore and on the operating table by 8 pm.
Healing is going well. Bili was 35 pre-op, 18, post-op, and 5 today! I started walking the hospital floor today and was put on clear liquids. I must say I feel better today than I have in months, in many ways I feel like I’ve gotten a reboot for life with this new liver.
Wishing you all health and comfort. 9-image.jpg (691 KB)
Hi Jesslin. Just reading your story for the first time tonight. Absolutely delighted for you and your family. Hope you are stilldoing well since your last post
