PSC & Pregnancy update

After a pretty smooth pregnancy, I started developing edema in my feet/ankles/legs a few weeks ago. My albumin levels also started dropping and despite increasing my protein intake nothing seems to get them up. Last results they were 17 g/l.
Now at 34 weeks they’re pretty sure I have preeclempsia - kidneys and liver way overworked, I have developed about 1L of ascites in my abdominal area and the edema also moved up to my thighs and much worse. Blood pressure up and down (from 155/95 to low 130s/80s). Feeling pretty crappy, ocassional upper left & right quadrant pain. I know it’s possible for a “healthy” female to get preeclempsia but my gut says this is related/made worse by my PSC, esp the ascites!
Thank goodness baby seems ok so far but looking like the plan is to deliver end of this week. Today I have my last steroid injection to help mature bub’s lungs.
Feeling worried for both baby and myself. Would love more than anything to see her grow up healthy. Praying everything turns out ok!
Will update but if anyone has been through something similar would love to hear. Thanks. Hope you’re all doing well.

I am sorry to hear of your difficulties. My thoughts and prayers are with you. Hang in there.

I had major struggles with my PSC during pregnancy. I had to have an ERCP while 25 weeks pregnant. That was really scary. Developed pancreatitis and had complications. I spent the following two months in the hospital and my baby was born at 32 weeks. Thankfully, he was healthy and well-developed. He was only intubated for less than 24 hours.

I don't know how far along you are with your baby, but rest assured, preemies catch up very quickly most of the time. My son's first birthday is this Friday, and he is already caught up growth-wise. If he is behind cognitively, it isn't evident enough to matter. I wish you all the best! And really, once your baby arrives, it is so worth it.

Thank you both for replying!
I’m just in a really bad place at the moment. Things were getting worse so was admitted to hospital on 25 March - gave birth on 27th via c-section to a beautiful girl at 34 weeks 4 days. Thank goodness she is doing well and is only on a feeding tube (special care nursery, not intensive care).
I am still in hospital - blood pressure has pretty much returned to normal and the kidneys but the ascites!!! After delivery I continued to look 9 months pregnant, have had 6 albumin infusions and am on lasix/aldactone diuretics. The ascites started draining two days ago through the c-section and over 5L has come out so far … My stomach has gone down but looks like there are many more litres to go. Keeping fingers crossed the albumin/diuretics kick in soon, the wound doesn’t get infected or open. I’m just so scared and feel hopeless. We’ve managed to get albumin up from 13 to 28 but I’m not sure it’s enough. All I want is to live and be with my daughter and husband for decades to come but I dread this is not what this disease has in mind.
Has anyone had bad ascites and is still “ok” years later???
I know I need to be positive but just feeling so down and scared at the moment.

I don't have experience with that. But have hope. Upward trend is good. And also be aware that especially after giving birth, baby blues can definitely add to your panic. I had a huge meltdown about it after my son was born. I know hope can be hard to see, especially when things are rough. But if your numbers are going up, however slightly, that is still progress. Grab that and hang on for all you are worth. Any progress, any forward movement is hope that you can hang onto. Congratulations on a healthy baby! Hang in there, mama. :)

(Also, March 27 is also my son's birthday! He was born at 32 weeks. Having a preemie can be scary, but they catch up fast. My son is fully caught up, physically and developmentally, at a year. Don't panic!)


I have Chrohns and PSC and became pregnant. My pregnancy went surprisingly smooth until at 34 weeks, 4 days my water broke. I was not in labor so they kept me in bed for 2 days and then induced labor. Our little boy was in the NICU for 17 days but is now 2 months and is doing great. Having a baby early is scary but there are great doctors and nurses out there. Good luck and congrats on your baby girl.

Updates, Ivy? How are you?

Thank you everyone for replying and checking in - I'm sorry I haven't been on to reply. I did get to go home after 2 weeks in hospital and my baby girl came home after a bit over 3 weeks. Although it's taking time, things are improving. Ended up having over 8 or 9L of fluid come out of the C-section wound over a few days but luckily didn't need a tap after that and there were no infections. For me I think the albumin infusions were a life saver and I have been advised to not have another pregnancy.

One other complication was that out of nowhere I had pain in my sacrum on the left hand side and couldn't weigh-bear which put me on crutches for a month. My GI suspected ankylosing spondylitis due to UC but by the time I saw the rheumatologist for a follow-up the pain went away and I was walking normally. An MRI showed a lot of inflammation and oedema in both joints but I'm waiting to see another rheumatologist as I wasn't given any clear diagnosis.

My little one is doing fantastic knock on wood - she has doubled her weight and is just so precious. She is falling asleep on my chest as I type and it's just wonderful! My mum also moved in to help out which has been a godsend as I'm on strict orders to get enough rest, eat lots of protein and put on weight.

From the bottom of my heart thank you for the kind replies and encouragement. I was in a really bad place for a while and reading your messages did help.

Congratulations Ivy.... I'm glad to hear you and the little one are doing well. Good to hear that your mum has moved in to help as well... sounds like you will be as right as rain before long to enjoy many more such precious moments (",). Wishing you and the little one all the best. Take care x