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Ulcerative Colitis and Pregnancy


Sun, March 15, 2009 12:00 AM

I have been searching endlessly through the internet to find information on UC and pregnancy.  I was diagnosed at age 20 with ulcerative colitis.  The first two years were pure torture.  Luckily I had a boyfriend at the time that was very supportive and is now my husband.  We are looking to start trying to concieve in the next couple of months.  I went to my GI doctor (who is the greatest!) and told him of our plans.  He got me in for a colonoscopy to make sure that everything looked good before we start trying.  He gave us the all clear and said we could start.  My OB doctor had told me that I should stay on my meds for the first two trimesters and then get off of them all the third trimester.  I currently take 1000mg of sulfasalazine (although I am prescribed to take 2,000mg-I just get sick of taking pills though), mercaptopurine (or 6mp) 100 mg daily, Imipramine 30mg daily, folic acid 1mg, Levothyroxine 63mcg (hypothyroidism - thyroid meds), Citracal 250mg+D (take 2-4 a day), Prenatal Multivitamin.  My GI disagrees with the OB and says that I should ABSOLUTELY NOT stop ANY colitis medications.

I know that research says that sulfasalazine is okay, but 6mp is a little sketchy.  I absolutely want to do what is best for my baby and myself, but am really worried about hurting the baby with these medications.  Has anyone had a healthy baby while being on these medications?  Especially the 6mp, I am most concerned about.

My other concern is breastfeeding.  I really want to try this, but again am worried about taking the medications.  Is this safe?

Thanks in advance for any replies, help, and information you can give me.

FPO rax10
Joined Mar 15, 2009

Mon, July 05, 2021 7:26 PM

Reply posted for jnse24.

I had my first 5 months ago. I was diagnosed with UC during my pregnancy and had c-diff at the same time. I was hospitalized for 2 weeks in my second trimester. It was really scary not knowing anything about UC and unsure if the babe would make it. I was put on remicade while in the hospital. Eventually things got under control and although being born 5 weeks early, babe is doing great. 


I am now thinking about my 2nd but terrified the same will happen. Things are currently under control, as with my first I was flaring lightly when I got pregnant. I also went thru 2 years of infertility. 


Anyone out there had this or similar experience? 

FPO LM85
Joined Jul 5, 2021

Mon, March 30, 2009 3:39 PM

 Reply posted for rax10.

I was diagnosed with ulcerative colitis at the age of 18 and I am not 23.  Ulcerative colitis is not fun to deal with and the thought of trying to conceive is scarey.  I got married last year and my husband and I plan to conceive next year-does anyone have any advice on pregnancy and Lialda? 

 

P.S. I wish the best for all of you and please keep in touch-alot of people dont know what we go thru.....

FPO durango18
Joined Sep 24, 2008

Mon, March 16, 2009 12:00 AM

 Reply posted for reymer.

Thank you everyone for your replies so far.....it is quite comforting to know that others have and are in the same boat with me.  Please continue sending me information as I think no matter what I decide I will still be unsure until I actually have a baby and see that they are fine and healthy.  Any other information that you can provide would be fantastic about what you have been through regarding this topic.

I did find some information on CCFA regarding pregnancy and IBD.  According to this pamphlet, it says the following:

"Aminosalicylates: Sulfasalzine and other 5ASA compounds such as mesalamine (Asacol, Pentasa, Rowasa, Canasa, Lialda), balsalazide (Colazal), and olsalazine (Dipentum) do not increase complications or harm the fetus.  Sulfasalazine may cause nausea and heartburn.  Women can breastfeed while taking a 5 ASA compound."

"Immunomodulators (Immunospressives) Immunosuppresive drugs such as Azathioprine (Imuran) 6-mercaptopurine (6-MP, Purinethol), and cyclosporine A (Sandimmune, Neoral) appear safe during pregnancy in standard dosages.  Both men and women should avoid methotrexate."

What is considered a "standard dose" I am not sure, but will be asking my GI.  I do believe that he would probably not be telling me to keep on everything if the benefits didn't outweigh the risks.  From the others who said that they were in the hospital for 5 weeks (so sorry about that! :-(  this makes me think that maybe it is best to avoid any flare-ups at any cause.......I am not sure what I will do, but will post more information when I find out from my GI.  If you come across any more research or information about this, please share.

Thanks a lot to all of you! :)

 

FPO rax10
Joined Mar 15, 2009

Mon, March 16, 2009 12:00 AM

 Reply posted for rax10.

Rax10 and other members,

I read your email and I am in the exact same boat. I have had ulcerative colitis for 3 years now.  I am on 6mp 100 mg and Colazol 750mg. I am ready to start trying to conceive.  My former GI doctor told me that I should start weening off the 6mp six months before I start trying to get pregnant. I should absolutely not be on it while pregnant. My current GI doctor told me the opposite that I should a not discontinue taking any of my UC medications. He said a risk of a flare while pregnant is worse than the risk of being on these meds while pregnant.  So, what did you decide to do? Will you stay on the 6mp or not during pregnancy.  Did you find any research supporting this one way or the other? 

Is there anyone out there who got pregnant and had babies without complications while on 6mp?

Thank you for your help

FPO reymer
Joined Mar 16, 2009

Mon, March 16, 2009 12:00 AM

 Reply posted for rax10.

I am 32 and diagnosed with UC at age 17. I now have two beautiful girls age 4 and 5. My UC has always been under control with the help of maintenence drugs i.e. Asacol and when a flare up occurred it was treated with prednisone. When I got pregnant, my condition got worse and steroids did not work. I had to then introduce 6mp and cyclosporine durning both my pregnancies and hesitiant for obvious reasons. The risks of not being on the meds, I felt would have been worse. So if you are in a remission now, I would stay on your medications. Prgnancy does funny things to you and you never know how your body is going to react. Like I mentioned, I always considered my case mild, then with my first I was in the hospital for 5 weeks to get it under control. I have amazing doctors who closely monitored me. My OB saw me almost weekly. Both children were perfectly healthy and are thriving. I was induced 2 weeks early with both and they were slighly lower in birth weigh (4.2 and 5.9), but nothing major. I agree with the lack of information on this topic. I did not breast feed though. Hope this helps!

FPO jnse24
Joined Mar 16, 2009

Sun, March 15, 2009 12:00 AM

 Reply posted for rax10.

I am not sure if you have done this yet, but your pharmacist can become your best friend at times like these.  Doctor's are great at knowing which drugs work best for which conditions, but if you really want to find out risks of any drug, the best place to go is your pharmacy. I have had the BEST luck with my small town pharmacist,  because he knows me and my family and I feel more comfortable there than at the huge chain pharmacies that seem to turn over staff like crazy. It also helps that the smaller pharmacies aren't so swamped with work, that they can spend 20 minutes talking to you if need be. I had similar issues related to medication use/or non-use when I was pregnant with my last child. (not UC meds-- I was suffering without diagnosis at that time, but those for other conditions)  I found that  the doctors knew a lot about the meds they personally prescribed, but not necessarily about ones written by other doctors, so  I finally got the most help by spending some time talking with my pharmacist. Even if you decide to follow one providers advice over another,  it never hurts to get an opinion from the people whose entire job centers around Medications.  Good luck with your pregnancy, I hope this helps.

FPO mara269
Joined Mar 7, 2009

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