Pregnant. Flaring. Miserable.

Hi all, haven't been on here in quite a long time, but I could really use some advice if any of you have it.

I was diagnosed about 3 years ago, and have yet to get into remission. I've tried all sorts of drugs: cortifoam, asacol, immuran, remicade, methyltrexate, prednisone...and others I simply can't think of right now. No luck with any of them, other than prednisone, which as we all know isn't a long term solution! I started Humira at the end of February, and saw minimal results. Well I guess it helped more than it seemed, because I found out in May that I'm pregnant! Dating shows I conceived on April Fools Day, how fitting LOL! I'm now 13 weeks, and the past two-two and a half months have been MISERABLE. I'm flaring like crazy, I'm cramping really badly off and on all day every day, and the bm's and urgency are so bad that some days I literally can't leave the washroom for hours on end. I'm going to the washroom at least 20 times a day, and am up at least 7-8 times during the night. My bm's are basically liquid to start, but then I feel constipated too. I'm still on the Humira, and my dr added cortifoam too. The pain from cramping is killing me but I can't take any painkillers, and on top of it all, my morning sickness is soooo bad! My obgyn says that he doesn't know what to do for me, as most ladies in his experience have gotten better during pregnancy and flared after birth, when they could medicate with whatever they want. The only good news from him is that they believe UC doesn't affect the baby at all. However, my feeling this horribly can't be good for the baby, and when I'm this sick my nutrition can't be good, and I'm scared my hemoglobin will drop to the point I need another blood transfusion (I've had half a dozen or so pre pregnancy). My specialist is away until I see him on July 10th, but has so far said he feels Humira is fine for the first two trimesters, and then I would be safe to go back on prednisone in the third trimester if I need to. Honestly I don't know if I can last another three months like this before I can get back on prednisone and get some relief! Has anyone gone through a pregnancy while flaring? Any advice? I'm so miserable! I can't sleep, can't eat, can't live anything even remotely like a normal life :(

I am so sorry you're feeling so terrible. I don't know too much about pregnancy and flaring - i've never been pregnant but I completely understand that you're uncomfortable and you need to get some relief. I wasn't aware that you couldn't take prednisone during the first trimesters. That's going to make things really difficult because a lot of the medications are scary while pregnant (or unknown), especially to start something new while pregnant, of course you'd prefer to wait it out until after the baby's born but it may not be possible :( I guess you will have to try to wait until the 10th and if you can't, you will have to go to whoever is covering for your specialist and ask for treatment options. Some people's UC improves with pregnancy and it's possible that there will be a point where yours will calm down and you get a break. I hope that's the case. Have you tried adjusting your diet? I know when I am going 20x a day, I don't eat much of anything - but being pregnant, that's not an option...

Are you still using rectal meds? probiotics?

I agree with Kloe, as many women who get into remission during pregnancy - the same number don't get into remission during pregnancy. In fact, it seems like on this forum many women flare in their first trimester and then things quiet down until after birth. Of course, there is no way to predict what will happen to you.

I do want to say that my "morning sickness" (which is a ridiculous name since I felt awful all the time and threw up dinner more often than breakfast) gets worst around 11 weeks and then gets better. While most say that it ends in the first trimester, for me it really went away for good around 20 weeks of pregnancy. Nutrition in the early trimesters is important, yes, but not as important as it is later, and we can only hope that you will be doing better in a few weeks.

I think you should be able to stay on Humira throughout the pregnancy and hopefully it will help more as you get further along. You might want to get into a high-risk ob practice at this point since it seems likely that you will indeed need a blood transfusion.

best wishes

I'm sorry to hear what you are going through. I was flaring horribly through my pregnancy, but I was undiagnosed at the time. Looking back at my notes, it started around 15 weeks slowly. By about 23 weeks it was 20+ BMs per day. I was put on modified bed rest for a separate problem (short cervix) and along with the flaring it was so stressful. I couldn't sleep more than 45 min without a mad dash for the toilet. My pregnancy weight gain peaked about 21 weeks before I started loosing some. My OB Gyn insisted I gain 2 lbs within two weeks and I tried so hard to track my food sand get calories in me. I was so frustrated that no one could help me with my diet or how to tackle what was going with my GI tract. A chiropractor I was seeing was the main one who spent a good amount of time with me and tried to help me think of easy to digest nutritious foods for baby. She advised me to eat as much avocado as I could handle. Her thought was to eat as many as 5 a day if possible and take Ensure drinks. My mom made me zucchini bread regularly and added protein powder. There was any magical food that stopped it, but some were way worse. Beef left me spewing from both ends. Tmi. I lost my appetite because I think I developed a fear of eating knowing it would cause me so much pain. Towards the end when I lost weight and was trying to gain it back, I would force myself to eat a turkey burger or chicken breast. I eliminated all dairy for one month as I was undiagnosed and just trying to figure out anything to give me relief. ...it didn't help.

People kept telling me not to worry about the baby because the baby gets what he/she needs first. I found that almost impossible to believe. The quantity I would see in the toilet everyday was unimaginable, and within minutes of eating. I could not fathom how a baby could grow in that situation. But my little girl was born at 34 weeks 4 lbs13 ounces. Remember I also had a short cervix so I'm still not sure why she came so early. My water broke. She was small but healthy. She didn't even stay in the NICU. I felt so relieved and I still pause at the thought of her miracle. I feel like I went through so much during much of that pregnancy and she fared so well. It is possible!

Do what you can to think positive and reduce stressing about it. Prayers for you.