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Newly Diagnosed with UC, Pregnant, and Overwhelmed

pregnant woman with ulcerative colitis

Introduction to Liz:

I’m a 29 year old female, diagnosed in April 2012 while pregnant with my first child, attempting to maintain my full time position in an office 90 minutes away without losing my mind or my baby.
Colitis Symptoms Right Now:
Horrible cramping and loose stools, only occasional blood after very bad days (hoping it’s hemorrhoids and not UC bleeding anymore).On a good day, I wake up, and within 10 minutes or so experience moderate cramping, run to the bathroom, and poop a whole bunch (of what usually looks like cat-poop) over the next 30 minutes or so. After that I’m usually fine for the rest of the day.On typical bad day, i wake up, don’t get cramps, and then spend the day in fear of when the cramps will come… because they almost always do. And then they don’t stop.

My Story:

Being raised by a mother with terrible UC, in and out of the hospital, culminating in a scary but successful J-Pouch, I’ve lived my life in fear of one day being diagnosed with UC. Luckily, I’ve been generally healthy up until this year. I’ve had my run ins with digestive issues (Lactose intolerance – I’ve survived on lactaid pills for years; C-Difficile infection after a trip to a 3rd world country and a course of CIPRO; monthly diarrhea with menstruation), but since I never had any blood, we thought I was in the clear since I’m almost 30. I did start experiencing some increased bloating over the past year or so and had started to experiment with a gluten-free diet, which seemed to help, so all in all I thought things were going pretty well.

And then I got pregnant. The pregnancy was planned, and I was healthy going into it. But almost as soon as I saw that positive test, I started having crazy diarrhea and cramps on an almost daily basis… with constipation in between. “Ok” I thought… “maybe I have diarrhea instead of the more common puking”. But then I started bleeding… which I sincerely hoped was hemorrhoids (what have I become… **hoping** for hemmorrhoids?!?)… but I talked to my doctor and decided to consult a GI. They were leery of performing a colonoscopy in my first trimester to look for colitis (given the family history), and equally hesitant to prescribe medicine without a diagnosis (which was fine with me since I was terrified of poisoning my baby) so as long as I wasn’t bleeding profusely, they recommended we wait a few weeks. So I just continued life as best I could for the next few weeks, blaming most of my absence from work on morning sickness (which, lucky me , I was also experiencing).

The bleeding backed off before the colonoscopy, but I was still feeling pretty crappy and they ensured that it would all be safe for the baby, so I went through with it in week 15 of my pregnancy. I was diagnosed with “mild to moderate pan colitis”, and prescribed Lialda (initially 2 pills/day, stepping up to 4/day). They say Lialda is PROBABLY safe for the baby, and although I was very hesitant to take drugs while pregnant, the doctors convinced me that it was more dangerous to the baby if I left my colitis untreated. I asked if i had any chance of healing without medication, and they said “I highly doubt it”. So I am taking the pills.

Since my colonoscopy 2 months ago, I have hardly bled at all. I still have cramping almost every day, occasionally severe, and I have bled 4 times – all after really bad days, blood all at once, and then no blood the next day.

I maintained my gluten free diet until mid-May, when I went on vacation to Spain, and found that eating gluten free and meeting pregnancy restrictions while on vacation in Europe was practically impossible, so I began eating “fresh” gluten containing items, like fresh bread but not packaged crackers. For the most part, this is still the diet I’m following.

My doctor insists that diet cannot cure UC, but that some diets might make me more comfortable… she suggested the FODMAPS diet for decreased bloating/cramping. From all the things I’ve read online and on this site, the SCD, Paleo, and GAPS diets are all highly recommended for helping achieve and maintain remission. Pregnancy guidelines, on the other hand, all recommend tons and tons of fiber containing grains, fruits, and vegetables.

My questions to the UC community:

**Does it help to make some dietary adjustments (say, reducing sugar intake), or do benefits only come with an “all or nothing” approach?**
From what I’ve read about the SCD diet, Elaine Gottschall insisted that the guidelines must be strictly adhered to… but being pregnant and stressed and overwhelmed and working full time with a long commute and a husband who doesn’t cook, I just don’t see myself being able to commit to the crazy amount of time preparing, cooking and cravings that come with the SCD diet. I’m starting to feel that if I want to be healthy, I have to quit my job and become a full time chef… this can’t be true!

**Have you found anything in particular (and hopefully safe during pregnancy) that helps with the cramping?**

**Is there anyone else on this site who is currently pregnant and terrified out of their mind about how the UC and/or medication will affect their baby?**

**Does anyone out there believe they have successfully warded off a post-birth & breast-feeding flare up with diet? Has anyone had a post-birth flare while already on Lialda?”

**How do you deal with all the conflicting information you receive from different websites and doctors?** Two examples:
1. Even my dr agrees that sugar is bad for colitis. But she recommends I take citrucel… which has sugar in it.
2. Probiotics – I read the other day (on the Breaking the Vicious Cycle website) that we should never consume bacteria begining with “Bifid”. Yet, that’s what all of the “clinically proven” probiotics are now… align, activia, etc. Is Elaine’s research outdated? Or are all the new probiotics bad?

I’m sorry I wrote so much! Thank you for taking the time to read my story if you made it all the way through!

Where I’d like to be in 1 year:

Mother to a healthy baby, cramp-free, and able to eat in a restaurant occasionally.
Medications I’m Taking/Taken:
Lialda – I’m not really sure if it’s working or not. Most of the blood stopped before I started taking… I suppose my cramps are not quite as severe as they used to be, but otherwise I don’t feel like much has changed.
Citrucel – Just started last week, still only taking a teaspoon each day.
Align – I’ve been taking on and off for a few years, at doctors suggestions. When I stop taking, things… smell worse.
Prenatal Vitamin – Thank goodness, because I don’t feel like I’m getting very many nutrients from all this low fiber food!

written by Liz

submitted in the colitis venting area

9 thoughts on “Newly Diagnosed with UC, Pregnant, and Overwhelmed”

  1. First off congrats with your pregnancy. Second, I’m sorry you’re going through colitis while pregnant. I’ll tell you a little about my process with colitis. I started feeling bloated and had a little bit of mucus with my poo at the very end of 08 while living in London. Then in April of 09 I started getting light pink on my toliet paper and was dealing with constant constipation. My mom was a nurse in the GI hospital ward. So I decided to go see a doctor in July 09 (I’d already moved back to the states by then). By this time the mucus was greater and a little blood in tp. She said I needed a colonoscopy but I put it off until the end of October. On November 20 2009 they called me in to tell me I had mild proctitis. I was in such denial and said no to all drugs except to try canasa. Well after being in that for a few days my colitis seemed to get worse! The bleeding just progressed and cramps were bad. So I stopped all meds. They put me on lialda for a bit in early 2010 but this just made things worst and I had bad joint pains. Finally at the end of February 2011 I was really sick. I found myself in the hospital needing a blood transfusion bc I’ve lost so much blood. My main symptoms were bleeding, crippling urges, and mucus with occasional cramps. I was so depressed. I got the blood transfusion and had another colonoscopy to find that I had severe procitis and my disease traveled up a bit. So they put me on rowasa enemas, asocol, and predisone. I never felt better and my colitis was clearing up. By the end of December I was pretty much symptom free but not all the way cleared of bleeding. So I stopped asocol and started vaporizing weed bc I heard its great for colitis. Well to my surprise the bleeding had stop and it was like I had no colitis at all. Then on February 14, 2012 I found out I was pregnant (not planned but so happy now:). My colitis hasn’t returned and I’m off all meds. I’m praying my remission stays. I’ve heard that asocol is better then lialda while pregnant. Also do try the rowasa enemas. They stents nice to start but I really feel this is what helped the most. You’ll learn to love them :) I’ll pray for you to be in remission. My GI doctor wants me to start back on asocol as soon as I deliver bc they say the flare ups are worst once delivered. I haven’t decided yet. Asocol is safe while breastfeeding but can cause diahrea in infants. I would say scd is worth trying but start slow bc otherwise you won’t last. I’d also say cute out all sweets and bad carbs. Feel free to message me anytime. I’m 24 weeks Wednesday.

  2. Liz~
    congrats on the pregnancy!! I know what your going through, one day I need to write my story before I forget everything. My first ever flare up was when I was pregnant. It got really bad really fast and for a week I pregnant in the hospital without answers to my horrible pain, blood, diarrhea. My daughter was born premature at the end of that week. The next day I had my first colonoscopy and finally got an answer to my problems….UC
    I wanted to breastfeed and was ok’d by my OB, NICU pediatricians, GI doctors to take medication to heal & maintain my health. Prednisone, Flagyl, Asacol, and I think a couple others. I successfully recovered slowly but surely and was able to breastfeed. The food I ate was bland and more for fuel than taste. I worked up to chicken breast, rice, potatoes,etc. I did not stick with a “diet” but I just learned more by trial, error and use best judgement. I wanted to eat healthy as possible but those foods did not agree with me. No fresh fruits, veggies, dairy, yogurt, etc. But keep up with your prenatal vitamins and eat what your body can tolerate.

    Last year I got pregnant again and expected the worst. I had a major flare up again, a lot of major blood loss I had to get two blood transfusions. It was scary! I am just one of those people that flare when pregnant this pregnancy I took Apriso, as it is said safer for baby than Asacol. I was able to carry this baby full term! I now have two healthy babies and hope they never have to go through this.

    I can’t answer all of your questions but would be glad to talk to you more if you want. I hope that you have a great pregnancy and baby is healthy! I can say “Don’t stress out” but I know everything is amplified when pregnant. So I wish you the best, don’t try to be a hero ask for help, take care of yourself. I hope you have a great support system. I’m here for you if you need support Sorry I wrote so much


  3. I just had my baby 4 weeks ago. I was diagnosed with UC in summer 2010 was put on pred refused all mention of a maintanance meds because I’m a hippie and I don’t want prescriptions to be part of my life. So a month on pred and started the SCD diet I went into remission didn’t have another peep from UC until I got pregnant. I only lasted about 2 months on SCD at that time but still stayed in remission eating whatever. I kinda thought it was a big fluke that I didn’t have it cause it’d been 2 years since a symptom (good thing I didn’t put 2 years worth of “maintanance meds” into my system for nothing)
    The first flare up in my pregnancy I went strict back on SCD and started homemade enemas (probiotics, vit e and aloe). Also took Metagenics Ultra Inflamx and drank aloe. Got it under control myself stayed on diet until an anniversary dinner that I just could not resist the french crusty bread and said oh it’s my night I’ll splurge and I ate about 3 loaves of it. BUT then the next day I couldn’t stop my binge. I ate cake and then a pizza and then a week later of all out binging I flared uncontrollably. Getting back on diet did nothing I was on the toilet 30+ times in 24 hours. Loosing tons of blood. I got severly anemic. Stayed out of the hospital though. Went to a GI got on pred at 35 weeks and started back strict on diet. Got better. The GI was of course horrified that I was seeing a midwife and having a homebirth haha He also thinks diet has nothing to do with UC. UM ok dude! He thought I should be near an Operating Room to have my baby. I had a completely wonderful uncomplicated homebirth with my midwives so he should stick to his expertise which to me saying diet has nothing to do with inflamation in your gut makes him not even an expert in GI!
    Was weaned from 40 mg of pred to start at 35 weeks to 10 mg by my due date. Had a peaceful lovely birth at home not a single complication. Breastfeeding my new babe and tandem breastfeeding my toddler as well. I started pregnancy ast 160lbs at 39 weeks I was 154lbs and after baby born 143. UC and grainless/sugarless/low carb diet made gaining weight impossible during pregnancy. Don’t let it scare you my baby came out completely healthy 6lbs 10 oz and breastfeeds like a pro and is now almost 9 lbs! I had regular ultrasounds to insure baby’s growth was on track even though I was loosing or maintaining the same weight most of the pregnancy. About a week after the birth poo began to soften up and took a couple steps back in consistancy but still only going twice a day still on 10 mg pred just because of the threat of flares after having the baby. SO I got back on Ultra Inflamx and bought Good Belly probiotic drinks now things are back firm and long perfect poo about to get off the 10mgs of pred.
    Yes I’m kinda thinking that the research in the SCD book and website can be a little outdated. There are soo many new natural health food products and supplements available. But I guess it’s just finding what works for your body cause we’re all so different. I use maple syrup and it’s illegal with no problem. I use coconut sugar which is a newer product not even listed on the website but most people assume is illegal. I’ve learned from a lot of trial and error how to cook grainfree using great websites like and just to name 2 out of hundreds of recipe sites for paleo and scd diets. I just got my food sensitivity test done to find out if I’m eating something constantly that’s causing inflamation. Inflamation is caused by something and finding the cause of each individuals inflamatory response to me is the key to controlling UC.
    I say go with your gut (pun not really intended) try different things to get your UC under control. Lots of probiotics and Ultrinflamx with SCD works for me. I also think homemade enemas work wonders.
    Congratulations on the pregnancy,

    1. Hi Katie
      I have U.C and just found out im 6weeks pregnant my flare is really bad lossing alot of blood Im am like you and will not take meds i just ordered the scd diet and would like to try the enemas do you have the recipe you used never done this could use all the help I can get
      thanks melanie

  4. hey just wondering if anyone has any info and getting either unemployment or what forth for needing to take time off work for being sick?

  5. Get rid of the stress. Take a medical leave from the job and learn to relax. Get rid of Gluten and Wheat. Relaxxxxxxxxxxxxxxxxxxxx.

  6. HI Liz,
    My name is Shalynn I was diagnosed at 17 I had my one and only baby at 21 I had a relatively symptom free pregnancy with that said After having my daughter my body had a complete shut down My colitis flared like nothing my dr had ever seen. It took me a few months before i started realizing something was really wrong. I was weak,and very sick i was85 pds and almost dead by the time i checked into the hospital just few months before that I was 125pds!! i had the worst symptoms i couldn’t even pick my daughter up. as a result i had 5 blood clots all together in my legs from not moving for such a long period it was all bed and bathroom for me I was hospitalized for 1 month before I was well enough to return home It was so hard not being with my newborn baby girl. I couldn’t breast feed anymore and she pretty much forgot who I was :( SO out of all this I know first time mothers don’t take very good care of ourselves after birth but please please pay very good attention to how your body is doing keep in close contact with your GI, Ive been so scared to have another baby because of how things went my daughter is almost 7 now. So please don’t make the mistake I did take good care of yourself its best for both you and ur baby!!!

    good Luck and God Bless

    1. I was diagnosed with uc in 2009 &was cleared to become a surrogate mother. I took asacol and successfully delivered a set of twins for a lovely couple and went on to do 2 more surrogate journeys afterwards. 2 sets of twins and a singleton later I can happily say that all of the babies are of good health and my colitis is not nor will ever be cured but it is in remission. All my best. After my last colonoscopy my Dr stated that I didn’t have uc and told me to discontinue my meds,at the moment I’m waiting for a reply back to my email when I inquired “how could u have diagnosed me with uc and then tell me I’m ok?” my family Dr is purplexed as well as she has stated that I was probably in remission at the time and I should still be on asacol. Lately I’ve been experiencing a flare up and now I’m convinced to never hold back on any questions!!! We have the right to a 2nd opinion,,always. Take care xoxoxo

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