I have had psc since March 2007 and I have been on urso and pentasa ever since. My lft tests flare up every now and then but are usually under control. Me and my partner are wanting to try for a baby very soon (starting this month) but I am not due back to see the hospital for a few months to seek advice on pregnancy with psc or colitis was just wondering if anyone knew anything? Also the urso advice leaflet states that it is not to be taken during early stages of pregnancy so should I just bring myself off this? Sorry for the long essay but I’m confused about it all. My gp isn’t much use as he always says to discuss everything with my hospital consultant and won’t offer advice. Thank you!
Hi Sharpous
How courageous! A huge decision and worth gathering all the information (even if delaying things a couple of months?)
Maybe contact your hospital consultant (ASAP) and find out the risks involved with pregnancy and going off any medications? You may have to wait to get meds out of your system as well. It may take a few months to sort out, but is this not better than unnecessary risks to you and baby in the long run?
I had 2 children after a total colectomy with a J-pouch 25 years ago. Everything seemed to settle down during pregnancy and I was very careful of nutritional requirements. I was watched very carefully as well and had complications after c-sections with each. All turned out OK though and my son who is now 24, was the donor for my liver transplant!
Big decision! I hope you and the your doctors can find a path to make this dream possible for you!
Ruby
Thank you ruby! Yea I suppose your right, my original thought process of just starting to try was that my psc and colitis dont really make me feel poorly as since being diagnosed they progressed very much at all. So difficult to get in contact with my hospital consultant as he seems to have the view that until I get worse or my bloods elevate more that he doesn’t really have to do anything more for me and just sees me once every six months. Thank you.
Practice, practice, practice!
I can't say about psc and pregnancy, but I used to go to jpouch.org a lot, and remember posters saying they handled pregnancy reasonably with colitis.
Hi there! I am 27 and have been living with PSC and ulcerative colitis (in remission) for well over 10 years. My husband and I are also considering trying to conceive and I've been asking the very same questions -- and I've asked several physicians at my hospital where I work. I am not a clinical professional, but having access to these physicians has been tremendously beneficial.
Here's what I can tell you that I've learned -- but keep in mind I don't know your exact situation and it may be different than mine, so this is just what the physicians have been telling me. To begin, I was previously on Urso years ago, but I had a bad feeling about it so I just stop taking it -- a year later the liver specialist I was seeing said a study had revealed that it makes your blood work numbers look better but the people taking it needed a transplant sooner -- so I was glad I was off of it! I haven't taken it for well over 5 years and my disease has not progressed and my liver numbers via blood work are stable, so that's good! My suggestion would be to stop taking it, but of course check with your physician first.
Regarding pregnancy specifically -- my physicians (I've talked with two high-risk OB specialists and my GI/Hepatologist). All are in agreement that they simply don't know what's going to happen if / when I get pregnant. There just isn't enough data -- so I will be monitored very closely but just treated as high risk. When you are pregnant, your body's immune system shuts down slightly to protect the baby -- therefore, I might actually feel BETTER when I'm pregnant because my body won't be attacking itself through these autoimmune diseases.
They suggested that I do the typical pregnant steps -- take a daily vitamin and folic acid, eat healthy, exercise -- but other than that they aren't pushing anything else until we see what happens. HOWEVER, they all did warn me that I will be at higher risk for miscarriage, early delivery and could go into liver failure. Pregnancy puts tremendous stress on the liver in a "normal" person -- already having damage and disease makes it that much more complex. But again, my doctors have not discouraged me from getting pregnant. You just need to be realistic and discuss with your family the risks and what could potentially happen.
I'd be happy to stay in contact with you if / when you get pregnant -- I'm interested as well! If nothing else, I hope my scenario can offer some medical insight to help others with PSC who are considering pregnancy.
Overall, I suggest having a POSITIVE ATTITUDE because stress and worrying won't help and could just cause more issues. I'll be praying for you! Best wishes for that you get your little miracle! :)
Thank you very much for your reply Stacy. I think from reading yours and others comments that I need to wait and see my consultant first rather than just diving in at the deep end. Would be really good to stay in contact with you though and to offer advice to others. I have my annual colonoscopy on Monday so maybe I can pick someone else’s brain at the hospital other than my consultants, will keep you updated! 
X
I do not have any advice or insight on the subject, simply sending well wishes in whatever you and your partner decide. Kudos to you for seeking information before acting. God bless.
I’m not sure about medications, I was diagnosed just shortly before I got pregnant with my twin girls but I can definitely tell you that I felt so much better when I was pregnant! It seemed like everything I was experiencing before the nausea, loss of appetite, pain and frequent diarrhea all vanished while I was pregnant. I can’t offer much advice on the meds like I said but I figured I would let you know, I thought it might be encouraging. I am just now starting to feel crappy again and my girls are a year old (I wonder if it’s because I just stopped breastfeeding recently) I hope you find some answers and I would like to say good luck
Hi There, I've had two successful pregnancies with PSC and UC. I was on Urso before both and it didn't affect my ability to conceive and I didn't have to go off it until I was actually pregnant. Both diseases went into remission during my pregnancies which is very common but it all got worse after I delivered. It was definitely worth it but I wouldn't chance a third pregnancy, I became a bit worse after each time, particularly with the UC. Good luck!
Hi Sharpous,
My son just turned one last week and I was diagnosed with PSC in 2012.Before my pregnancy my LFTs were all very high with my GGt over 1000. I am very happy to say that throughout the pregnancy I had regular LFTs taken and within my last trimester some of my results were in the normal range.It was amazing!My Drs where amazed and put it down to the natural steroids and hormones that were created in the body during pregnancy and also the increased blood flow. I kept a very healthy diet during the pregnancy and gained as little weight as possible.After the pregnancy the LFTs went up again and have been fluctuating ever since.
However the only medication I had been on was Colostid to stop the itching but that was safe to take during pregnancy just not during breast feeding.So that’s all the advice I can give you.Good luck with everything you have amazing journey ahead of you.
Hi all,
Thank you for your posts! I appreciate them as I am also venturing down this road of potential pregnancy. I hope you don't mind me asking a few more questions -- this is something I've been exploring for months now and it's nice to finally have someone that has successfully given birth with PSC.
Can you describe your symptoms prior to your pregnancy so I know what you mean when you say they went away? I'm always itchy (terribly itchy and it's horrible at night or if I get too hot), I'm extremely exhausted all the time, I eat constantly but know my body isn't absorbing nutrients, I have skin issues and back pain because of my liver. Did you have similar symptoms? I hate to say it ... but in addition to bringing a beautiful child into the world, I'd love to just be symptom-free for nine months! I've said for years that I'd give anything just for one day of feeling "normal".
Also, how long was it after delivery that your symptoms came back / blood work became elevated? Was it immediate, a few days, a few weeks, a month? Just trying to get a better understanding of all this.
Thanks for you insight!
Well I didn’t have many symptoms before the pregnancy.They only picked up the PSC when we had a miscarriage which they don’t put down to the PSC.I get upper abdominal pain every now and then and that started many years before I was diagnosed. During the first trimester I had really bad itching to the point that I would draw blood but I was put on a drug that stopped that and I could take that safely throughout the pregnancy.As for the tiredness I knew that I should expect to get tired from the pregnancy but I didn’t experience any increase in tiredness after the first trimester. After the pregnancy I had my first bloods taken at about 7 weeks and they had gone up to more than what they were before I got pregnant.But they have gone down a little now.You get tired anyway when you have a newborn so I always slept when baby slept that help keep on top of the exhaustion.Dont worry about the housework you just need to look after yourself so you can look after the bub.I also kept away from diary during the pregnancy and after as I noticed a real lack in energy after eating any diary products.So overall I felt pretty good during my pregnancy and didn’t get to complain a lot like many of my pregnant friends had done!We are planning on a second baby soon while I’m still pretty healthy.Let me know if I can help further.
Hi Sharpous6 - my husband and I are currently trying for a baby. It depends on the stage of your PSC but I would suggest seeing a high risk obstetrician and make sure he/she speaks with your gastroenterologist as this will be a team effort! I'm still on Ursofalk and Colozide and have not been told to go off it (although I think I'll ask about this again). Wish you all the best! I'm here if you'd like to share experiences or need support.
My symptoms prior to pregnancy were itching, fatigue, high LFTs, joint inflammation and pain and the even less joyful UC symptoms (diarrhea, extremely painful cramps, etc.). Once pregnant everything went away except the joint pain and obviously fatigue but pregnancy makes you tired anyway. My LFTs were still elevated but not at an alarming level and remained exactly the same until the end of the pregnancy. I felt well enough to exercise regularly and I slept very well (except the last few months of pregnancy which are very uncomfortable due to the gigantic size I was). I was off all meds during this time (although I wasn't on UC medication before both pregnancies because although my gastroenterologist always suspected, my UC wasn't officially diagnosed until after my second baby was born). My OB/GYN didn't do much in the way of extra tests for me except running full liver function tests every time I had routine blood drawn. I kept seeing my hepatologist but there wasn't much to be done because things were stable. He said that this often happens when women with PSC get pregnant. It can go one of two ways, things get really bad or things go into a temporary remission. It's as if the body knows it has to protect the fetus. But unfortunately we can't stay pregnant forever and about a week after giving birth, my UC symptoms in particular came back with a vengeance. By the time I was a month postpartum I had incredibly painful abdominal cramps, shocking diarrhea. In hindsight if I had had the colonoscopy to confirm UC prior to my second pregnancy, I would have simply gone back on my meds after giving birth but because I got pregnant a couple of weeks before I was due to have a colonoscopy, they wouldn't do it. As for PSC, all symptoms returned and were initially worse than before pregnancy but they did calm down after I fully recovered from the delivery (which was naturally, not a c-section). My LFTs went way up again (I was tested 6 weeks postpartum). At this point I started test after test to confirm UC, stage PSC, determine what was causing which symtoms; basically all the tests my gastroenterologists wanted to do but I kept getting pregnant. When I finally went on UC meds (Pentasa), things finally settled down and I felt a whole lot better (3 months postpartum). I am now 8 months postpartum and my UC is still stable, my PSC has settled down to the usual symptoms, I have kidney stones which I pass every now and again and I'm on a pain management plan for my arthritis. It's been advised that I don't have any more kids because I did fair worse postpartum the second time but luckily my husband and I are stopping at 2 kids. I should also warn you that I was advised not to breastfeed because a lot of the medication for PSC and UC can pass through the milk and it's also an incredible strain on your body which could exacerbate the symptoms. I chose not to breastfeed and it was the best decision I could have made. I had enough going on taking care of a newborn (and the second time, with a toddler too), being sick with PSC and UC that the last thing I needed was the stress of breastfeeding. It would have also made it difficult for me to have the follow up tests I needed (MRI, Colonoscopy, Bone Scans, Liver Biopsy, etc.). Things stabilised faster because I was able to go on meds ASAP. I was also able to rest more because other people could give my baby a bottle. That's about it as far as my experiences went. I hope all goes well for you. Good luck! :o)