Join the iHaveUC.com FREE email list, and join over 15,000 other subscribers managing their lives with ulcerative colitis

Ten Weeks Pregnant and Practically Begging for Meds

me out in the VIneyards

me out in the VIneyards

Intro:

I was 23 when I got diagnosed, after many years and many doctors. At that time I was severely dehydrated in a hospital. It was the worst flare I’ve ever had and it lasted about six months.

Some more about me:

I am very active, normally, and really care about good food and nutrition. I am a teacher and I do Brazilian Jiu Jitsu.

Symptoms:

Gas, cramping, diarrhea, bleeding, pain, and weight loss.

Ten Weeks Pregnant…

So I’m in really bad shape right now. I’m terrified. Almost ten weeks pregnant and a flare that just went from slight to severe over the course of the past five days. I did not even start this pregnancy on a flare, and I stopped taking my meds (Lialda) initially, because I was told it was alright to do so. I imagined a lovely med-free pregnancy. My condition has been rather stable over the past three years or so. I am eating a very natural diet, great in variety. I was even able to drink coffee and have some beers every now and then. We wanted a baby very much and couldn’t believe when it worked out so quickly! Then, about five weeks in, the symptoms started. At first, I thought it was all pregnancy related, but it kept getting worse. Now, I believe the prenatal vitamins may have something to do with it. The painful gas is gone and I have less cramping since I’ve stopped taking them. My diarrhea is a lot more frequent, however.

I’m bleeding heavily now, from my colon, and I spend a lot of time in the bathroom. Any sudden movement seems to get me running instantly… I’m a teacher and can’t use the restroom whenever I want at work, which is a problem right now. I want to take Canasa because I know it would help. I normally have more inflammation at the rectum. I had some Canasa left over from a while back, used it, and had a fabulous night’s sleep. It was instantly soothing and I can just feel it is what I need to get me out of this quickly. But my GI changed his mind about prescribing it. My OB/GYN checked out the meds and ok’ed them. They are in the same category as tylenol. I was told it was safe to take them and that the OB/GYN has the final word in this.

I don’t understand what made my GI change his mind, but I have to see him for an appointment in five days, before I’ll know more. I am scared that this flare gets even more out of control and I lose more weight and I end up in the hospital or on steroids again, which are more likely to do damage to the baby. Not to mention I couldn’t possibly gain weight like this. Anyone with any experience or advice on this, please???

Medications / Supplements:

My main drug is Lialda. Besides that I normally take digestive herbs as needed and I trust in a healthy natural diet.

written by Rebeka

submitted in the colitis venting area




17 Responses to Ten Weeks Pregnant and Practically Begging for Meds

  1. Adam
    Adam September 21, 2014 at 1:35 pm #

    Hi Rebeka,

    If you have some free time, you might want to read through the “Pregnancy and Colitis Survey” that 107 people participated in a few months ago.

    I just scanned through the survey results again (which are located here on this page: http://www.ihaveuc.com/pregnancy-and-ulcerative-colitis-107-person-survey-results/ ) and I think that question #10 which was the open ended question at the bottom might provide you with some thinking from others who have had in some cases 6 pregnancies after being diagnosed with UC. That question starts like this:
    “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.”

    Either way, there are some really spot on ideas from others who have certainly “been there” and gone through what you’re in the middle of.

    Best of luck with your GI, and please keep us posted whenever you have time.

    best to you Rebeka,
    -Adam

  2. Camille M
    Camille September 21, 2014 at 4:38 pm #

    Holy cow, Rebeka, you are in a pickle! A wise doctor once told me that “they do not do testing on pregnant women,” so I would not trust anything to be safe 100%. Do you live near a major city or teaching hospital? I would look into another GI opinion, or at least talk to your OB/GYN about another GI opinion. Lialda has more side effects than many other Sulfa type meds, so I would guess you are smart to avoid it, at least for another 2-4 weeks. Then, the fetus is mainly growing and not developing as much, which is why the safety of everything changes at that point. What about topicals (i.e. enemas with steroids)? I would guess the Canasa is a good idea. Best of luck to you and remember that you need iron! If you cannot take regular iron, try Megafoods Blood Builder. It is plant derived and much easier to take than regular iron.

  3. Barb September 22, 2014 at 8:21 am #

    Hi Rebeka,

    So sorry to hear you are having a flare. I was pregnant with my 2nd child when I found out that I had UC. I can only tell you what they did for me. They put me on the steroid and a dose of Sulfate which is a mild medicine. It did work =) Now here I am 16 years later just got in remission recently. I had a bad flare up in 2013 when I had C-diff which caused a bad flare. Anyway did you try taking a probiotic??? I know you don’t want to take the steroid but they are life saving and you might have to. Good luck and will be praying for you to get in remission.

    PS) I was blessed to have a healthy son =)

  4. Nikki Hamlin September 22, 2014 at 9:46 am #

    I am so sorry you are going through this. My only advice is go to an ER, now. UC and pregnancy is not easy; they are both huge stressors on the body alone. I had horrific complications during my pregnancy and almost lost my unborn son and my life. Please get help ASAP from someone who knows about this disease and pregnancy. My GI had no clue and she was useless. Also, go to a hospital which has a colorectal surgeon; a good one.

  5. Rebeka
    Rebeka September 22, 2014 at 11:19 am #

    Thank you guys! I wrote the article about two weeks ago. Since then, some things have happened, but I am still in the flare. Several doctors said Lialda and Canasa are safe to take. I should have never stopped the Lialda and my GI should have told me that. I don’t think he really knew about UC. The OB nurse has no clue how the disease works, of course, she can only look up the medications.

    So, anyway, I did not go to see the GI five days later because I did not feel he could support me. I saw my OB and told them I was still losing weight and that I had bloody diarrhea. They just kind of expected that this will resolve itself eventually (“the first trimester is always rough”…) We started doing vitamin E enemas at night to get some relief and it worked in the area, but I started feeling weaker. I saw my primary physician after a trip to urgent care where they found out I was anemic. I took care of the anemia right away and by the time my primary tested me, I was normal. She gave me a steroid suppository and a referral to a new GI. I haven’t been able to go to work every day, because I needed some rest and time to heal. With the way our medical system works here, I have not heard from the new GI yet, a week later, but I am hounding them down. I need them to get me an appointment fast. They are being kind of evasive on the phone.

    Oh, in the meantime the OB also caught a urinary tract infection and they put me on antibiotics. Because if untreated, the infection could get worse and put me in premature labor. The antibiotics kicked off a fever that comes almost daily. I have two more days left of the course and I’m seeing the OB then as well. Though I think it’s a lot more important that I can get in to see the new GI. My primary said he actually has patients with UC that she knows of, so he’ll know the disease somewhat more.

    I’ve read pretty much everything on here about or by pregnant women and some said they had a flare the entire pregnancy. Most women continued on their medication and some took higher risk meds than Lialda and Canasa. I just worry so much. I want to get better. How did they do it? What did they eat? Because I can barely find anything edible or with enough calories. I went from 130lbs to 117lbs. Hopefully I’ll find more answers this week.

  6. Rachel September 23, 2014 at 3:52 am #

    Hi Rebeka

    I really feel for you :( It is hard enough being pregnant never mind having a flare too! For one, I have no idea why your previous GI told you to stop taking Canasa. Is that not a 5ASA med? I took Asacol all throughout my pregnancy and I was fine. I have a very active, healthy 18 month year old daughter. I was actually two weeks overdue with her and she weighed a very good 7 pounds 5 ounces and I also breastfed on the med for 6 months. I was told to stay on my UC meds and was literally forbidden to come off them in order to avoid a flare. Unfortunetely after I had the baby, I have had mini flares on and off and have found that I am not responding as well to meds as I used to. I am just coming out of a flare now after being put on Imuran (Azathioprine) which is what I believe is relieving my flare. Imuran will now be my maintenance med. Imuran is a lot stronger than the 5-ASA meds but my GI has told me that it is completely safe to use throughout pregnancy. All the research I have done online also suggests the same, even though it is a Cat D drug. My husband and I shall probably trying for baby number 2 next year and so I shall be staying on Imuran throughout my next pregnancy. Yes, I will be a little anxious but all you can do is put some trust in to the medical professionals and also go with your instinct. The main thing is that you are healthy and then baby has a better chance of being healthy too. A flare takes blood away from the placenta so you really need to get this under control as soon as possible. If that means taking steroids for a short time then I would personally do it. Many pregnant women have taken steroids throughout pregnancy and babies have been fine.

    Let us know how you get on. If you need to talk to another UC’er who has been through pregnancy on UC meds, then feel free to get in touch with me :)

    • Rebeka
      Rebeka September 23, 2014 at 9:55 am #

      Thanks Rachel!
      Congratulations on your healthy first baby!! :) I am glad you had some reasonable health professionals who urged you to stay on the meds. It’s what I found out later, that they should have done the same for me. I think I ended up with a GI and an OB who both do not know much about the disease. Now it’s really hard to get under control. I am on suppository steroids right now. I think they might be helping, but I wish I could keep them in a little bit longer.
      I do trust the medical professionals normally, unless I can tell they are not helping me. You can tell, when they know what they’re doing. When I feel like this I don’t mind following their orders at all, if I know they’re good at what they do.
      The new GI I was hoping to start seeing since ten days ago does not see pregnant women. So I wasted ten days and lost four extra pounds, just to be back at square one.
      Once I finally get help, I wonder if I might be upgraded to Imuran or something like that as well. Hope you continue doing well, and I am very happy to hear that someone with UC had a healthy pregnancy and baby (that was even overdue!).

  7. Emily September 24, 2014 at 12:28 pm #

    Hi there,

    I’ve had two moderate to severe flares while pregnant with two of my children, so I understand what you’re going through! My GI doc maxed me out on mesalamine products to get my flare under control- I took the highest dose of Lialda, Canasa suppositories in the am, and Rowasa enemas at night and that got my first pregnancy flare under control. My second pregnancy flare did not respond to that medication regimen although it has cleared up on its own since delivering my baby a week ago. My advice is to talk with your GI doc again and if they refuse to prescribe Canasa or anything else you need, I’d consider getting a new GI doc. That’s just ridiculous. You could miscarry or go into preterm labor if the inflammation doesn’t resolve. Not trying to scare you, but my biggest regret with my first flare-up was that I didn’t start the meds soon enough and suffered unnecessarily. By the way, I have 3 kids now, 2 of who I have been pregnant and nursed while taking all of those medications and had zero issues. Hope this was helpful for you and good luck!

    • Rebeka
      Rebeka September 26, 2014 at 10:53 pm #

      Thank you! You’re not scaring me. That was my fear all along. I’m responding in a more detailed post at the bottom, but I do have a new GI now. I got hospitalized because of all my symptoms.

  8. Emily September 24, 2014 at 12:44 pm #

    Ok apparently I should have read the rest of your comments to see your updates… Anyway, again I understand how hard it is to be in a flare while pregnant. My worst flare lasted from about 8 weeks prego until 25 weeks prego or so before I finally got it under control. I didn’t lose weight like you did, but I was miserable. I briefly tried the SCD diet but didn’t follow it strictly so I didn’t have good results. With this last pregnancy, my flare started up around 34 weeks pregnant and I did end up losing 8 lbs over a couple weeks because of dietary modifications and all of the diarrhea. I was so worried about delivering in a flare and considered oral steroids, but then ended up delivering my baby before having to take that next step. Miraculously, I went from 10+ bms the day I delivered my baby to 1-2 bms/day within 24 hours. I’ve continued to be virtually symptom free since my delivery a week ago.
    I hope you find a good GI and get this flare under control. And I think it’s good that you’re hounding them until you get in for an appt. My GI also mentioned Imuran if I were to get pregnant again, so I would also consider that if all other less serious meds didn’t work.

    • Rebeka
      Rebeka September 26, 2014 at 10:55 pm #

      Congratulations! Nice to hear it all worked out in the end :)

  9. Lorena September 24, 2014 at 1:34 pm #

    Hi, congrats on your pregnancy! This is supposed to be a happy time in your life so don’t let UC discourage you. I took asacol during my first pregnancy and also breasted after for a year. My son is ten today and healthy. During my second pregnancy y stopped taking my meds because I felt good and had been on remission. Right after giving birth to my daughter I experienced my first bad flare up and ended with steroids for about six months. I never stopped my meds ever since. I was on antibiotics this past December and flared up really bad and ended up on the hospital. I was on IV steroids for a week and have been able to stop them and am now on Lialda, Canasa and 6mp. Since then I’ve done a lot of reading and believe the antibiotics messed up my flora. I’m watching what I eat and want to stop 6mp soon because I’m loosing lots of hair. My GI is very good. I’m blessed he has helped me through two bad flare ups. But I also believe I must be informed and ultimately bring up any concerns or treatments to him. If you leave in LA I can recommend you to him. Please know that each person is different. You have to find what best works with you. Don’t worry, I guarantee this will pass and you will get better. Stress doesn’t help. I recommend you get a GI doctor that can work with u and your ob/gyn and get u through this one. Take care!!!

  10. Tita September 25, 2014 at 5:10 am #

    Oh, I’m sorry to hear that your condition worsened so thatp you cannot enjoy your pregnancy to the fullest. I’ve had two friends who told me that prenatal vitamins made them sick (they don’t have UC) so you might be right. I do wish you a speedy recovery and that all is well in the future!

  11. Rebeka
    Rebeka September 26, 2014 at 11:24 pm #

    An Update: I am currently writing from the hospital. I was admitted four nights ago through the Emergency Room. The straw that broke the camel’s back was when the new GI my primary had lined up for me told me he would not see pregnant women. But I was doing so badly. Who was going to help me? We waited eight days for the referral. Days in which I lost another five pounds. I was down from 130 to 116 at that point. 12 weeks pregnant. So we called my OB and my Primary and let them know we’re headed to the ER. They supported our decision.

    Because there was no reason to be optimistic, the ER doc admitted me to the hospital, where I waited 3 days to see a GI. Until today. Why? Because I was lucky enough to end up in the hospital served by the guy who doesn’t treat pregnant women. I cried to every nurse and MD that saw me that I need a GI, because nobody else could admittedly address my symptoms. They’ve been giving me IV fluids and IV antibiotics, diagnosed failure to thrive/I’m malnourished, low potassium, and a high white blood cell count. They had me on a regular diet and pushed me to eat. I said I can’t because it caused me so much pain. Luckily this is a nice hospital with room service and I could order a la carte. So they don’t bring me the trays fully loaded with stuff I wouldn’t even touch on a good day.

    On day 2, an MD prescribed prednisone and I was allowed to get pain medications. I’ve never considered those before, because I was usually toughing it out, but they said I needed to get rest. I took the morphine and it was quite the relief. Then the prednisone started kicking in too. My over night BM frequency dropped and I went over ten hours with a poop. It was heavenly. I’ll take the pred because I know I have to at this point. All the natural ways and my own tricks failed a long time ago. I want to get out of here and get well and let my baby finish growing in a strong body.

    The GI came finally today. He was the guy who refused to see me all along, but I know they kept calling him and prodding him day after day to go see me. Ridiculous, I know. Anyway, he ended up being a nice guy and quite knowledgeable. He adjusted the prednisone and made sure I was getting a mesalamine without harmful coating. Now I’m taking many many capsules however, because each only holds 250 mg of the drug. Lialda used to hold 1.2 g per pill. I don’t know how this will change the effect, because I’m sure the capsules dissolve much sooner in my body as well. This GI also said if I wanted to be treated by someone who knows what they are doing in regards to IBD, I should go to “Dr. Kim”.

    The good news is that the day my husband and I left to the ER, I told my Primary that the GI won’t take me as a new patient and I wondered who was there to help me then? She mobilized her nurse to get me a super fast referral to this magical Dr. Kim, and I was able to schedule an appointment. It will be in a little over two weeks, but I think with the meds I have now, I can survive until then and continue getting better. It will be nice to be seen again by someone who knows more than me about the disease. These past weeks, it seems that all I’ve been doing was educate medical professionals on the disease, the risks, the diet, the medications, their risks, the disease plus pregnancy, …

    Well, anyway, thanks for reading. I feel like today was a good day. Full on pred and all, I only had 4 BMs. Now on to night sweats and/or insomnia. I’ll take it as a trade-off.

    • Mike October 4, 2015 at 9:00 am #

      Hi Rebeka,
      My wife is going through something similar right now, and we are considering steroids – how did things go with the rest of your pregnancy?

      • Rebeka
        Rebeka October 4, 2015 at 7:40 pm #

        Hi Mike!

        The flare started in September and I had some complications from it: A rectal abscess and C-Diff. C-Diff had to be treated with Vancomycin, a super antibiotic, but I felt like I wouldn’t make it, or eventually my baby wouldn’t. I only needed one course of vanco, thankfully. I also did have to go on steroids before the vanco, but I was gladly taking them at the point I was at. I was on steroids until December, so for three months, because of the complications and how slowly the flare went away.
        I wasn’t doing well, but the baby was. They were monitoring us frequently after I got out of the hospital. The third trimester was kind of nice. I was able to eat again, and I was hungry all the time! Struggling to put on some weight and nurture us both. He was growing well, and at 32 weeks he was two or three weeks ahead of the average growth! That was good, because he came at 34 weeks and 5 days.
        He was a healthy baby, weighing 5 lbs 15 oz, and came out kicking and screaming! Some of the medical staff actually suggested the steroids helped his lungs develop. Throughout the entire pregnancy I had a feeling that my son was well, I was just very afraid that I was wrong. Now, Connor is over seven months old and perfect (of course, as a mother I would say that…)!
        Please let us know how your wife and baby are doing!

  12. Mike October 5, 2015 at 7:34 am #

    Hi Rebeka,

    Thanks for the update – we are really happy to hear that everything went well and that you have a healthy baby!

    My wife is also taking Vancomycin – she had c-diff and is now tapering off of the antibiotic. We just found out that she is pregnant, so it is still early (5 weeks). She started to flare almost immediately after getting pregnant and so just went on Prednisone yesterday. She’s now on 6mp, Remicade, Vancomycin and Prednisone. Of course we’d rather she didn’t have to take medicine during this, but it seems the best thing is to get the flare under control.

    We had some trouble figuring out if the flare was UC or if it was the c-diff coming back, but our best guess is that it is a UC flare from hormonal changes because of pregnancy. A c-diff test came back negative, but we haven’t found the tests to be that reliable, and the two diseases are so similar in symptoms.

    Thanks for letting us know your pregnancy went well despite the symptoms – it reassures us.

    Mike

Leave a Reply