Pregnant and UC Flare

pregnant with colitis flare

Brookie, 29 years old & pregnant.

Meet Brookie G:

I’m a 29 year old caucasian female from Minnesota. I’m currently 20 weeks pregnant. I have had IBS symptoms since junior high and spent the majority of my high-school years in the bathroom. How cool was that! But, I managed to keep it a secret from most people. I was diagnosed with proctitis in 1999 and with full blown UC in 2002. I’ve had c-diff once before and a couple of hospital stays over the past 10 years and treated with Asacol on a daily basis since the diagnosis with bouts of prednisone on and off when flares popped up.

Colitis Symptoms:

urgency (even through the night), frequent BMs, and dying the toilet with bright red blood. C-diff ruled out. Weight loss of a few pounds

Pregnant with a Colitis Flare:

I had been in remission for about 4 years. I have been on daily Asacol for the past 10 years and have always eaten a lower carb diet as a life style (not too strict) so thought it was a great time to try to start to have a family. I could basically eat and drink what I wanted. I have eaten a lower carb/sugar diet to stay in a healthy weight range on my 5 foot frame and wasn’t really due to UC. Even though I take Asacol on a daily basis, I felt like UC was in my past. I rarely had symptoms. 20 days ago (around 18 weeks pregnant in my second tri-mester), I got the dreaded flar!. My GI Doc started me on 40 mg/day of prednisone for 20 days and just tapered down to 30/day. Symptoms are maintaining but not getting better. I lost a few pounds of the ten I gained during the 1st half of pregnancy. This is the first time in my life where the prednisone doesn’t seem to be working like a magic pill and I still dye the toilet with blood. I HATE the insomnia side effect! I have been on spurts of prednisone for 6 months at a time and know all to well the Moon Face. I started the SCD a couple of weeks ago after having a “Freak out” phase, started feeling better and then ate like crap for a few days. Thus, my gut didn’t like me going back to the sugary/carb stuff and now am starting the diet up again. It’s hard having the pregnancy cravings and eating on this diet! Anyone else on this diet while they were pregnant? Were you able to put on enough weight on? Were you on prednisone? Is your baby ok? I’m worried about anemia and pre-term delivery. Did you have a high-risk OB? My GI doctor said that is usually common for people to continue to have a flare up during the remainder of the pregnancy due to all of the changes stress on the body. I down a probiotic yogurt every morning too. Any feedback would be helpful.

Where I’d like to be in 1 year:

Symptom free, like I used to be (even if I have to continue on Asacol).

written by Brookie G

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20 Responses to Pregnant and UC Flare

  1. Barb October 22, 2012 at 8:29 am #

    Brookie,

    I too was diagnosed with ulcerative colitis at the age of 29. I was four months pregnant. My symptoms were the same as yours. I lost 14 pounds. I thought I had a stomach virus and for 3 weeks the GYN told me to eat rice and bananas which I did however, still having the symptoms I went for a check up and sure enough they admitted me into the hospital for a week and they found out it was UC. I was treated with prednisone and sulfadiazine. My son was 3 weeks early but other then that he is now a healty 14 year old boy. I have had flares here and there.

    Just over the past year I had a flare because I quit smoking. I battled for 11 months off an on with the Prednisone and Ascal. Which normally would make go back to smoking but not this time I choose to fight this flare up without going back to smoking and it has been over a year that I have smoked. The doctor even put me on shots of Remicade, which did not work. From there I switched doctors and she did the colonscopy and started me with 40mg of Prednisone for 4 weeks then went down to 30mg and so on I am now down to 10mg and taking Ascal. I am feeling much better however, the side effects are taking over but by next week I will down to 5 and I order Adam’s books so I am hoping to find some good recipes.

    Hope this information has answered your questions. Best of luck!

    • Brookie G
      Brooke October 22, 2012 at 4:30 pm #

      Hi Barb, (I’m sorry if this is a repeat post, I’m not sure if my last one that has this same information had gone through.) Thanks for your post and support. Congrats on quitting smoking by the way and fighting through that! That is awesome and I’m glad there is light at the end of the tunnle here for you. It’s always comforting to here the success stories and am so happy you have a healthy 14 year old boy! Adam’s recipes are great. The diet was bit of a shock for me as I had been the on-the-go type and didn’t do much grocery shopping, prepping – lots of prepping and cooking which this diet requires. I still cheat here and there and give in to time and cravings but seem to always go back to it when symptoms flare. The egg dishes are pretty good (if you like eggs). Again, thanks for taking the time and energy to write and enjoy the recipes!

  2. Destini October 22, 2012 at 9:05 am #

    Hey congrats on being pregnant! I have not been pregnant while having UC but i just wanted to let you know that there is a board on babycenter for mommies with crohns and UC, so if you dont get answers here, they are very helpful! Heres the link! I hope you find relief soon.

    http://community.babycenter.com/groups/a19275/crohns_diseaseulcerative_colitis_mommies

    • Brookie G
      Brooke October 22, 2012 at 4:31 pm #

      Hi Destini! Thanks for your post and support. I will definitely try out babycenter’s site. I appreciate you bringing that to my attention!

      • Destini October 25, 2012 at 6:19 am #

        Your welcome!! I hope it helps!

  3. krisi October 22, 2012 at 10:34 am #

    Don’t freak out! The exact thing happened to me! I got a high risk doc who walked me thru the whole pregnancy and kept me at ease. I flared for the first eight months. Lots of blood loss but with proper monitoring and implementation I went full term and had a healthy baby boy at 38 weeks. Yes, it was hell on my body, but my baby was fine. Email me anytime for support.

    • Brookie G
      Brooke October 22, 2012 at 4:40 pm #

      Hi Krisi! Thanks for your post and re-assurance. I can’t imagine flaring for 8 months during pregnancy. I’ll consider my self lucky to have been flare free for the first trimester! I visit my regular OBGYN this coming Wednesday. My GI doc has recommended that I have a high-risk OB so I’m going to ask to be transferred to one then. I think I will feel better with one. So much of this stuff is psychological! I do tend to freak-out, especially when I’m awake all night and day with the prednisone. My GI also put me on steroid-foam enemas. They typically take 14 days to start working and I’ve got one week left to see if they start to help – no luck yet. I’m happy to hear you went full term and your baby was fine. What a relief! What type of monitoring did they do? Did they put you on prednisone through out the pregnancy? Thanks so much for your feed back. I really appreciate it.

  4. krisi October 23, 2012 at 7:04 am #

    My GI refused prednisone during my pregnancy. All docs are different. I stayed on Asacol (4800mg/day) and Canasa twice per day. Plus my high risk OB tested me for other things that happen with UC’ers, which yours will do as well. I don’t remember specifics (I was SO SICK all of it is a fuzzy memory for me) but I did not produce enough folate and also was at higher risk for blood clots. So, I was also on extra folate pills, plus my prenatals, low dose aspirin for blood clots (that was a dispute with GI and high risk OB, and high risk OB won), extra iron pills for the blood loss and I think that was it. I was talking 18 pills per day, and joked about it often for therapuetic reasons! I also lost about 10 pounds at the beginning of the pregnancy from the UC flare and morning sickness, but slowly began gaining. I reported any small or big change to all 3 of my docs (reg OB, high risk OB, and GI) and they all continued reassuring me that if I follow their direction and try to keep my body as nourished as I could then my baby will continue developing as well. As a high risker you get LOTS of extra ultrasounds to check on baby, so that was a perk! And, you know what? After all of that, it is so rewarding for me to see my healthy 2 year old boy today! Hang in there, Brooke! Use your outlets for support, it is so worth it! And rest as much as your body asks you to. It is so important.

    • Brookie G
      Brooke October 23, 2012 at 3:18 pm #

      Thanks so much for your feedback and reminder to rest! I’m a super type “A” personality and need to remind myself to rest (prednisone does not help at all in that respect!). I appreciate your words and encouragement.

  5. krisi October 24, 2012 at 7:25 am #

    I’m also Type A so it ROCKED MY WORLD when everything felt so out of my control during my pregnancy. Seems like we have a lot more in common than we thought! Best wishes to you, Brooke!

  6. Sara November 1, 2012 at 11:10 pm #

    Hi there,

    I have had colitis for some time, don’t know how long. I was always told that it was ibs but 6 months ago I had a colonoscopy and they found out it was uc. It’s been a tough ride..l.i just got into remission for 6 weeks or so, and I found out I was pregnant….and wham, the preg caused a really bad flare up. I’m in my really early stages now, so I don’t know what will happen now. I don’t know if my pg will progress further….or what could possibly happen. Reading the posts on here has given me some reassurance. I’m still doubtful. Everything seems so bleak…and the pg hormones are leaving me in tears all the time. I hate the frustration…..and not knowing what to do.

    • Brookie G
      Brooke November 16, 2012 at 4:00 am #

      Dear Sara, I’m sorry I’m so late in getting back to you. I haven’t been back to this website for a coulple of weeks and didn’t realize you posted. How have the last couple of weeks gone? My flare didn’t start until the 2nd trimester so I’m not sure I can give any suggestions to 1st trimester flare ups. My heart goes out to you! It just plain old sucks to be pregnant and have a flare too. They say 1/3 or UC patients get better during pregnancy,1/3 of people’s symptoms stay the same and a 1/3 of people get worse and we just happen to be in that not so lucky category. I’ve been on prednisone (with no postive results as blood loss and symptoms continue) for over 2 months now. I had been and continue to take Asacol through the pregnancy. Asacol had previously kept me in remission for many years. The prednisone has helped with weight gain and I have the lovely moon face and insominia. I’ve had one visit with a high risk OB and he basically said that even though us mom’s with UC are in rough shape, will be anemic and feel “shitty”/lethargic, the baby does a really good job at taking what he/she needs to grow and survive. I shed tears quite often too. And it’s ok to do that. We get hit with not only the normal hormonal pregnancy changes but by this UC psychological drama. My GI doc wont put me on any other remission med while pregnant, even though the High Risk OB said it was ok. I trust my GI do a lot more. Please continue to message me if you have any questions, concerns or need support. Besides having UC, this pregnancy is one of the most trying times of my life! Hang in there. brookengramling@gmail.com

  7. ann January 3, 2013 at 5:03 am #

    eqSo you can still pregnant and have kids and is it more difficult

  8. Jenny Mom
    Jenny March 21, 2013 at 8:26 am #

    Hey Brooke,
    How did everything go? I think that if I’m doing the math right, you have had your baby by now. Boy or girl? When did you give birth? Did your symptoms get better, worse, or stay the same after birth?
    My hubby and I REALLY are ready to have a second baby, but I just got diagnosed in February, and I am on Lialda. So far I am still bleeding, but only having 1-2 BM a day, so it’s gotten better. I guess I was just afraid to start trying to get pregnant before going into remission, but if pregnancy could possibly just cause another flare, now I’m thinking… why not just start trying now? Haha. My symptoms didn’t start until my baby was 4-5 months old, so the last time I felt REALLY good was when I was pregnant, so I think I’m kind of romanticizing that time in my head… like if I were pregnant again, my symptoms would stop. :)
    Anyway, I just wanted to see how everything went for you! You should see if Adam can post a pic of your baby so we can all see, too!
    Best wishes,
    Jenny

    • Brookie G
      Brooke March 21, 2013 at 11:44 am #

      Hi Jenny! Thanks for your post. I ended up having a little girl, Addison Quinn. She was born just about 2 months early at 4 pounds and 1 oz on January 10th. She wasnt due until March 1st! The doctors have no clue why she came early. I had a bad cold for about 2 weeks prior to her birth and one night was watching TV, had a coughing spell and my water broke. They don’t think it was related to my colitis and baby just wanted out. The UC drugs i took during pregnancy were asacol, prednisone, a steroid enima…none helped my symptoms. i just kept bleeding and my iron levels got lower and lower. I definitely got the prednisone cheeks being on the drug for 6 months. My colitis symptoms (lots of bleeding and multiple bms) went away as soon as Addie was born. My doctor was shocked. My GI doc did a colonoscopy 6 weeks after postpartum and I’m in full remission right now, only taking Asacol a couple of times per day. He can’t explain it. He said that 1/3 of people’s colitis will get worse during preganancy (like mine), a 1/3 will remain the same and a 1/3 will improve. I’m hoping you are one of the lucky ones whose colitis improves:). My doctor recommends being with out symptoms before getting pregnant but if symptoms aren’t too severe, I say go for it!! :) I’m not familiar with Lialda and it’s effects with pregnancy. How old is your first child? Let me know if you have any other questions or if I can help in any way. This disease is something else!

      • Jenny Mom
        Jenny March 21, 2013 at 12:46 pm #

        Wow, I’m so glad that she’s okay! Congratulations! Little girls are just the best.
        My little girl was just over 3 weeks early and 5 1/2 pounds, and I thought that she was so tiny… I can’t imagine 4 pounds!
        That’s awesome that your symptoms cleared up immediately! (Stinks to have a colonoscopy only 6 weeks after birth though!) I think Lialda is similar to Asacol… is that mesalamine? I’m not really sure what all the drugs are, either.
        My girl, Lizzy, is already 14 months! It goes by so fast. Her birthday is January 12, so pretty close to your Addie’s! Snuggle her as much as you can while you can! The only time Lizzy snuggles me anymore is when she’s not feeling well… which of course, isn’t really a happy snuggle.
        I’ll let you know how things go! I have a follow-up with my GI the first week of April, so then I guess depending on what happens we’ll decide if we’re going to start trying yet or not.
        Thanks for replying so quickly!
        Jenny

        • Brookie G
          Brooke March 23, 2013 at 3:01 pm #

          Yes, please let me know how every thing goes! Hope you’re having a great w/e:)

  9. Erin February 12, 2017 at 11:42 am #

    Hi Ladies. I just came across your thread from 2012/13 as I find myself in a similar situation. I am so sorry that we have all struggled with uc and pregnancy…what a tough combo!
    I am 32, was diagnosed with mild colitis in August. My first flare cleared up easily with only meslamine and colifoam and I was blissfully in remission for a few months. At the same time, my husband and I have been struggling with infertility for nearly 4 years, 2 in treatment. Low and behold, after many, many failures, I finally got pregnant on this last cycle. I started a horrific flare (30+ bloody diarrhea/day) almost right from the positive pregnancy test. I was admitted to hospital for 10 days but even 60mg iv prednisone doesn’t seem to help. I am almost 7 weeks pregnant now, and we just found out that we are expecting twins! Great news but double trouble for hcg levels and this flare. After 2 weeks on prednisone I am down to about 15 urgent bloody diarrhea per day, but I have lost 7kg and and totally exhausted. I am so afraid that this will continue throughout my pregnancy (even the first trimester!). I have so far to go, and we fought so hard for these little beans…but now I just fear I can’t cope. What do I do? Any ideas for relief? Did anyone try antispasmodics? I was thinking they might help with urgency and at least let me rest for more than an hour at a time.
    ps- I am a Canadian but we live in Finland (my husband is Finnish) which has made this whole thing even more difficult to navigate….with my family so far away, everything in a foreign language etc.

    • Chrissy February 18, 2017 at 2:02 pm #

      Hi Erin,

      I have just read your thread and I’m so pleased for you to hear you are pregnant and with twins, and I totally 100% emphasise with the fear you have for the safety of your beans.
      I am 33, live in England, and was diagnosed with UC (proctitis) in 2007. I didn’t realise the severity of the condition, as symptoms disappeared right at the point of diagnoses, and so I didn’t even read about UC or return to the gastro team. Later in 2013 I started to flare, and so researched UC and realised what I had and would have long term :-( I got meds from the gp as I was literally about to go travelling. I didn’t take the meds and yet again, my symptoms totally dissapeared. Later they returned in 2014/2015, and i had a sigmoidoscopy and did also a colonoscopy which confirmed full UC. I got quite bad, and ended up on for the first time; Octasa (cheaper version of Asacol but basically the same), 6 x 400mg a day. I believe this is a low dose of a generally ‘good’ drug to have to take so I consider myself lucky. Anyway, I had been in remission for about a year, then fell pregnant in September 2016. I am now 24wks + 4. At the start of trimester 2 I flared slightly, increased my dose to 8 x400mg a day and it calmed pretty quick. Now, for the last 2 weeks, as I’m entering my 3rd trimester I’m flaring bad. I’ve increased to 12 x 400mg a day and belive this is the maximum you can take. The pain is not as bad as it was but
      I am still very regularly having bloody diarrhoea with urgency and it’s just hideous. For about 3 days I have barely eaten as too scared to, but also worry a huge amount for my baby.
      I think I will be put on prednisone for the first time next week which Im scared about. I feel like it won’t work. And I’m so sorry to hear it is not working fully for yourself, and wish I could advise you on some magic cure because the worst thing about this condition is that we seem to have no control and can just take each day with hope that it will go, even with the help of meds (which I absolutely hate to take, especially when pregnant).
      I’m not sure about you but on top of that I have the stress of trying to remain at work and a fear every minute of the day for needing the loo or worst case not even making it to the loo! I can’t go off sick because I was off a lot with incredibly bad morning sickness and also didn’t declare my UC when I took this job a year ago, and so I’m worried I would lose my job.
      This is a really crappy hideous disease to have which no one other than those who have it could really understand what we have to live with. I really wish you all the best and hope you are improving and baby beans are doing OK. If you get this and you can then keep me posted.

  10. Brookie G
    Brooke February 21, 2017 at 3:49 pm #

    Hi Ladies, Congratulations on your pregnancies! I am 18 weeks and some change pregnant, now 34 years old – but, I no longer have a colon. I had a total colectomy March of 2016 – almost a year ago. It is a night and day difference from my first pregnancy (when I had my diseased colon/UC flare). Besides my ileostomy bag (which has caused no problems at all) I’m having a total normal pregnancy. No steroids, immuno-suppressants, asacol, etc, etc – After many years of suffering it was either get the colon out or stay home, go on disability have no quality of life and live in the bathroom – wish I would have done the surgery when I was first diagnosed, many years ago. Do you have access to the IV Remicaid infusions? I live in the USA (side note… tail between legs, I have to live under Trump….yuck!)….Any way, Remicaid infusions was my last hope and it did keep me in remission for about 1 year. Before I had my colon removed (and I was planning on becoming pregnant) my GI stated I could have the every other month infusions until 8 months of pregnancy so maybe that is an option? I don’t know if they will start the infusions once you are already pregnant though. My heart goes you to you and your babes. If you ever want to chat about having your colon removed – I’m a huge advocate for it and would be happy to discuss the pros and cons with you.

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