Pregnancy and Ulcerative Colitis – 107 Person Survey Results

More Than Ever, Thank You to Everyone

(all the 107 moms!) who participated in the Pregnancy Survey that was announced a few days ago on the newsletter.  Like all of the iHaveUC surveys, this would all be worthless without your participation.

I was amazed at how many people emailed me from the newsletter group right after I sent out the announcement of this survey.  Many of the emails were from people(hopeful mom’s and dad’s who have or have a partner with UC) who wanted to be sure they would receive the results of the survey ASAP.  I tried to respond to all of you explaining how the surveys work.  But, since it is obviously not clear to everyone, here is the process.

  1. When survey’s are conducted, a newsletter email is sent to the active newsletter group.
  2. People who decide to participate fill out the survey
  3. Once the survey is complete (usually 3-4 days is given) I compile all the survey results
  4. The survey results are emailed to everyone who is signed up to the newsletter

Now for the results of the Pregnancy and Ulcerative Survey

(conducted late April-early May 2013.  107 UC’ers Participated from 10 different countries: USA, United Kingdom, Canada, Ireland, Australia, South Africa, Slovakia, Russia, Japan, and Kuwait…Pretty incredible again to see the mix which hopefully gives the survey results a global feel)

Question 1:

Getting Pregnant was…

  • 50% – Not difficult, took about as long as I expected
  • 29% – Holy Toledo, happened much faster than I expected
  • 8% – Somewhat difficult, took a while longer than I had expected
  • 7% – None of the above
  • 6% – Took a much longer time than I anticipated

Question 2:

BEFORE my pregnancy/pregnancies my Ulcerative Colitis was…

  • 48% – In remission
  • 24% – Active in a mild flare
  • 12% – Active in a moderate flare
  • 11% – Other option (see below)
  • 5% – Active in a severe flare

 

    • The “other options” answers:
      • Was not diagnosed to have UC but had severe ibs
      • Was not aware of UC, suffered very mild symptoms of Irratable bowel after eating certain foods but was cope able
      • Right before my pregnancy was when I first began to notice symptoms.
      • Didn’t have until my 4th pregnancy – symptoms appeared during that pregnancy.
      • no blood, problems mainly during menstrual cycles
      • remission on Salofalk treatment 3g daily dose
      • Non existent
      • Just diagnosed
      • Moderate flare, minor flare, and in remission
      • Cured due to ileostomy performed 5 years previous to pregnancy.
      • I was diagnosed during my second pregnancy. Looking back now I had symptoms 2 years before after having my first child. So I would say I had mild symptoms. Then during my pregnancy I had a severe flare and was diagnosed with UC
      • Prednisone was keeping my UC under control

       

Question 3:

DURING my pregnancy/pregnancies my Ulcerative Colitis was…

  • 28% – In remission
  • 18% – Sometimes active, sometimes in remission
  • 18% – Active in a severe flare
  • 14% – Active in a moderate flare
  • 11% – Other option (see below)
  • 11% – Active in a mild flare

 

    • The “other option” answers:
      • became active in the first month. I was switched to a different medicine and was put into remission for the rest of my pregnancy.
      • I was fine the first trimester and then the UC became severly active starting the 2nd trimester
      • Within two weeks it had completely gone like I never had it before
      • actual gotbetter when I was pregnant.Had 4 kids.
      • blood, baaad cramping, urgency, etc – couldn’t leave the house for a while
      • 2 episodes of active colitis in the first 4 months and then active in a mild flare till delivery
      • From approx 2 months pregnant until after her birth
      • In remission during the first 3 months and worsened as I got further along
      • It’s been a roller coaster. I have had periods of remission and periods of severe flare. I take it day by day.
      • I was hospitalized for the 1st time.I was diagnosed w/colitis 30 years ago,and I was doing well with it until pregnancy.
      • I had the operation to remove my colon.
      • In remission for all of my first pregnancy, in remission until the last trimester for second currently have a mild flare

Question 4:

While I was pregnant, I used colitis medications…

  • 39% – exactly like I always did before becoming pregnant
  • 17% – I stopped all medications
  • 16% – I changed my medications, but continued using medications
  • 15% – I started taking medications
  • 7% – Other Option
  • 7% – I never used medications before or during my pregnancy/pregnancies

 

    • The “other option” answers”
      • it has been 27 years ago, but i think i took prednisone.
      • I reduced my medication
      • I had just started Cimzia and got pregnant in the same week… oops!
      • No medication necessary after the operation.
      • I reduced my medication
      • I continued with the meds I had been on but decided not to take new meds.
      • Had to add in addition to regular medications

Question 5:

It seems that while pregnant, my colitis symptoms…

  • 28% – improve and get better while pregnant
  • 24% – get MUCH worse while pregnant
  • 16% – stay the same as before pregnancy
  • 15% – Other Option
  • 13% – get somewhat worse while pregnant
  • 4% – I have no idea, there seems to be no correlation

 

    • The “other options” answers:
      • With three pregnancies I had no symptoms, with my fourth I now am having symptoms, but I believe recent repeated antibiotics may have played a part in the most recent flare.
      • Was diagnosed during my first pregnancy 2.5 years ago for the first time so my symptoms were extreme
      • My symptoms went away completely for the first 5 months then they returned so had to go on steroids
      • the symptoms changed and the pain was more down the side rather than the middle.
      • This is hard for me to answer as this is when my UC really appeared for the first time. I had some symptoms before the pregnancy, and they did get worse afterward though. I am not sure if this is due to hormones or simply due to the fact that the symptoms went untreated.
      • up n down
      • Was up and down, I didn’t have much weight gain as I was quite bad at the start
      • during both my pregnacies I never had any flare ups, other than being at the end of a flare up during my first couple weeks of pregnacy with child #2.
      • Seemed a little better first and second trimester (with mild peaks and valleys), but then I started to eat crappier toward the third and they are now worse. (I’m at 31 weeks)
      • Fluctuate. I had much worse symptoms, and some that are exactly the same. I’m think I’m more sensitive to the flare-ups now because I don’t want to hurt the baby.
      • Colitis cured.
      • I was in remission until 32 weeks and had a terrible flare between 32-37 weeks of pregnancy
      • Great pregnancy. Last couple months UC was a bit active.
      • got worse just prior to delivery
      • improved slightly.
      • Flared during first trimester all 3 times

Question 6:

My child/children were born via…

  • 60% – natural birth
  • 24% – cesarean (c-section)
  • 10% – Other Option
  • 6% – I’ve done both (natural and cesarean)

 

    • The “other options” answers:
      • 40 hours of hard labour
      • Induced one month early. Baby stopped growing inside. Vaginal birth.
      • Not born yet
      • not yet born
      • I don’t give birth until the end of June, but I thought I should contribute anyway as a person not on meds who tries to control my UC with diet.
      • I am due on July 21st.
      • I’ll know in 8 more weeks!
      • With assisted delivery
      • Was in the birth canal but would not come out. Emergency c section
      • 2 natural and one c-section
      • due in August!

Question 7:

Were you worried that your unborn child may someday have UC?

  • 56% – Yes, but it was only rarely on my mind
  • 23% – Of course, I thought about it everyday
  • 18% – No, this wasn’t something I thought about
  • 3% – Other Option

 

    • The “other option” answers:
      • I occasionally thought about it as they grew up
      • Still is a worry.
      • I didn’t worry about it then, but I do worry about it now, as I know more about UC.

Question 8:

My child/children…

  • 85% – Don’t have UC or UC symptoms
  • 13% – I’ve got no idea, I’m too excited being a mom to worry about UC!
  • 1% – Also have UC like I do
  • 1% – Some/one of my children have UC

Question 9:

What was the most difficult part of your pregnancy/pregnancies related to UC?

(there were many many responses to this question, below is just a random sample.  All the responses will be released in the future)

  • Now that I am flaring during my fourth pregnancy for the first time, I worry about the nutrition my baby is receiving while I am having blood, mucus and diarrhea in my stool. Also, I worry about any long term effects of Lialda (the masalamine that I take for treatment) may have on my baby and on myself. Or if I have to be put on Prednisone, I worry about the effect of that for my baby and for my self long term. But my OB has assured me that the baby only receives very small trace amounts of Lialda, any hydrocortisone enema’s or even prednisone that I may have to take. They feel the benefits of those drugs keeping the UC in remission much outweigh the small trace risk to the baby.
  • Yes this was the WORST time of my life. I almost died 2 times because of misdiagnosed issues. Bleeding for the whole 10 months of pregnancy. Only gained 20 pounds. My son was diagnosed with autism soon after he was born because of the meds the dr’s gave me. It took me 4 years to recover only after having a hysterectomy.
  • Staying in remission during pregnancy and dealing with colitis/bloating/constipation immediately after and weeks following birth.
  • My most difficult time was after giving birth to my children. I had a huge flare up within a week of giving birth to my second daughter and everytime I breastfed her I would have crazy urges to go to the washroom. As gross as it sounds 1/2 the time I’d be running to the toilet with baby latched on my breast in hopes I would make it on time. I lost about 15 pounds in a couple weeks due to this bad flare as well my baby was having a hard time putting on weight. She is healthy now and I got through the bad flare as usual.
  • None I was in remission for 7out if the 9months
  • Feeling like I always had to have a bowel movement along with having to pee all the time
  • Staying hydrated. I drink at least a gallon of water and Gatorade a day plus other fluids and sometimes its still not enough. Exhaustion is constant, and the sleep deprivation seems to never go away. I also had to go on prednisone for a while, and that always makes me really puffy and this time the puffiness didn’t go away after I stopped the drug.
  • Doctors wanted me to be on meds – and me not wanting to be on them!
  • My UC was most under control while pregnant. I could eat and drink anything I wanted, and felt great. Wish I could be pregnant all of the time just so my UC was under control. After my second (twin) pregnancy, my UC flared to the worst it ever has been. Resulted in 6 week hospital stay, and Remicade eventaully allowed me to leave the hospital. It’s been an uphill battle since then though.
  • The hardest part for me was/has been getting back into remission since having my son. Had a wonderful pregnancy took my meds without problems or complications to my baby. Had a smooth delivery with no complications. It has been three years since giving birth and I can’t seem to get back on track.
  • I was tired from bleeding and being pregnant at the same time. I was not diagnosed with colitis until after I had my first child that same year. I had my second child 2 years after I was diagnosed.

Question 10:

If you have any thoughts on Pregnancy and UC, or anything else related to the topic, feel free to share your thoughts below.

(there were many many responses to this question, below is just a random sample.  All the responses will be released in the future)

  • My only thoughts are, that if you are in remission, it is a great time to get pregnant. Just remember to stick with at least a somewhat low fiber diet, so as not to inflame your colon during pregnancy. Also, try to do all they things recommended to help your UC, like reduce stress, and some kind of relaxation, yoga, good sleep, good hydration, etc. I also encourage you to seek a naturopath or dietician for assistance if you do flare during pregnancy or just afterwards, to be sure you and your baby are getting adequate nutrition and to use more natural remedies whenever possible, as a GI doctor may not be as helpful in these areas. And do your best to discourage your OB from giving you antibiotics unless they are truly needed as they will kill off your healthy gut bacteria, which is a first line of defense for you against your colitis.
  • My first 2 pregnancies were not affected by UC. Last year, I was hospitalized with major flare and 1 year later I am pregnant again. I did have mild flare symptoms that were responding to mesalamine prior o conceiving and now 6 weeks pregnant still in moderate flare. SCD diet helping , but need to go on prednisone. Currently taking 4.8 g of Asacol, cortenemas and hydrocort suppositories….not helping.
  • My UC went into remission, or a quasi-remission, during my second trimester and I remained well until around my baby’s 6-month birthday. There seems to be something that often triggers a flare for UC women around the 6-month postpanatal mark. I’m guessing it must be hormonally connected but I don’t know. If you’re breastfeeding, that’s around the time when you start introducing solids to your child so your hormones will begin to experience a shift as your breastfeed less, as well as for other reasons postpartum. I started flaring again around that time and have been flaring ever since. I thought it was hard to be in a bad flare and be pregnant, but to be in a bad flare and be taking care of a young child is nearly impossible! I really started to go downhill. I recommend making a plan ahead of time to get help with childcare if you start flaring post-birth, so you can nip it in the bud and get your health back in your control as soon as you can. It’s so hard as a new mom to put yourself first but really this is what you have to do in order to get well and be able to fully take care of your child. I don’t want to end on a negative note, so let me say that even though my health was in the pits for a lot of my daughter’s first two years, being a mom has been a joy. It’s a challenge that’s worth every ounce of effort you put into it. And it gives back much more than it takes.
  • Although my UC was bad through and after pregnancy and I currently have a temporary illeostomy, it hasn’t put me off the idea of having more children.
  • I didn’t have problems getting pregnant but in maintaining the pregnancies. I had a total of 8 pregnancies. Two were before I was diagnosed. A year before my last pregnancy it was discovered that I have “lupus” antibodies. I had to be on blood thinners.
  • Stay on meds while pregnant, no matter how great you may or may not feel. Stay in contact with your GI doctor during pregnancy, even if you are having no symptoms. Be prepared for the worst after delivery because once hormone levels return to “normal” this may result in a flare.
  • Sometimes getting pregnant brings out lost of good in your body and helps you to heal; sometimes it brings on lots of stress and aggravates the colitis…you never know….
  • It’s weird and Doctors of course don’t give much thought to the correlation but my UC symptoms started after my first child was born. UC was diagnosed about a year later. I suffered with UC (hospital stays, missing work etc) for 6 years and then got pregnant (not planned because I was so sick)with my second babe and after she was born all my UC symptoms cleared and I was finally able to wean off of Pred. It’s been 4 years and I am still Pred free!
  • If your in remission when you get pregnant you usually stay in remission. Except for the occasional mild flare and morning sickness.
  • I think it is okay to have children and colitis at the same time. You do have to understand, raising children even once they become adults is very stressful. Not a good combination for us uc moms. I love my children and would do it again. Make sure you have a lot of support from you mate. It is possible.

************************************

Thank You Once Again to all 107 people who participated from the newsletter group.  As I’ve noted above, there are several questions which have more detailed individual answers from some of the participants, and those will be added to either this page, or to a new post in the near future, so please keep up with the site if you are interested in learning more on this topic.  In the interest of time and getting this information out ASAP, I’ve decided to post this info right away to those who are wanting to read it quickly.

I wish all of you, mothers, fathers, and UC kids, and non UC kids the very best, and hope this information is valuable to many people now and in the future moving forward.

Warm regards,

Adam Scheuer

******The full response list is now available to be read here:  http://www.ihaveuc.com/pregnancy-and-uc-detailed-responses/

7 Responses to “Pregnancy and Ulcerative Colitis – 107 Person Survey Results”

  1. RonnieMay 3, 2013 at 11:25 am #

    Thank you for this survey Adam and thanks to all the Moms, it helps alot especially since we’re considering a third baby:-)

  2. Nikki in Chico
    nikkiMay 3, 2013 at 3:17 pm #

    Wow I can totally relate to many of these women. I myself have two children. I was diagnosed at age 20 and had my first child at age 23. Both of my deliveries were normal, neither of my kids have problems of any kind. I took mesalamine (asacol) during both pregnancies. I had few to no symptoms until the last couple of months during both pregnancies. After the births I breastfed as long as I could, but strangely, as soon as my babies would latch on I would get the sudden urge to potty. I felt like such a freak! I think alkylglycerols which are present in high quantities in breast milk may somehow be correlated with the body’s ability to control inflammation. Wish I would have taken the survey. It’s an important topic. Yes, I worry that my kids may get this or some other autoimmune disease. Seems like everybody has something. It’s got to have something to do with the western diet. I feel empowered by my new way of eating. No grains, no sugar.

    • Nikki in Chico
      nikkiMay 3, 2013 at 3:19 pm #

      Oh yeah, my kids are aged 8 and 12. Both boys.

    • NehaMay 3, 2013 at 9:12 pm #

      Hi Nikki,

      Can you tell me which diet you are following?

  3. LauraMay 3, 2013 at 9:25 pm #

    I missed the survey – would have participated for sure!!! I was diagnosed with UC in April 2012. In remission from my first flare by June (when I became preggers with our second child). No issues until Oct/Nov when I started flaring again. Pretty much had bleeding until our son was born in late February. My colitis became much worse after the birth (which I’ve heard is quite common). I had a scope done 3 weeks after delivering and my GI put me on prednisone 40mg (8 week taper). By week 3 it was well under control.

  4. maryannMay 5, 2013 at 2:31 pm #

    Thank you for this survey and for all those who shared. My husband and I have been on the fence about having a baby because we both have UC. We both worry about the possibility of passing it on and what I could experience. This gives me a little more insight!

  5. BethanyMay 10, 2013 at 8:56 pm #

    Adam,
    thank you so much for doing this survey. My fiancee and I are struggling with our current decision on starting a family. I have gone through the gammit of medications and diets and what have you so I’m currently terrified of whats going to happen when we start our family. This definitely helped and made me feel more comfortable. My fiancee, GI, family, and I have more or less come to the conclusion that the chances of me going to surgery following my pregnancy are high so we are planning ahead and to care for me and our hopeful newborn. Thank you again. This was perfect timing!

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