30 weeks pregnant...can't get flare under control...feeling helpless/hopeless

I'm 30 weeks pregnant. I started flaring right before Christmas. I upped my Lialda and Rowasa from maintenance doses to flare doses 2 to 4 / nightly. Didn't help. Started cort enemas at night Canasa during during day. Didn't help.

The pregnancy seems to be making me resistant to the meds that used to work for me. Landed in the hospital on New Years Days. IV steroids for 3 days and left on a 40 mg prednisone taper.

Got down to 25 mg and the flare is back. GI is having me up the pred back to 40 mg today, scheduling a flex and beginning to discuss Remicade.

This is my second flare and I don't want to have to jump to biologics if its mainly the pregnancy hormones making everything that much harder but I have to get it under control.

I'm terrified I'm hurting the baby. I'm terrified of pre term labor. I'm terrified of Remicade. The steroids have me spinning and I feel helpless and hopeless.

What worries me is the flare getting worse and going into pre term labor. Right now all I'm passing is mucus, blood and bits of stool. I've been on prednisone for over a month with no real improvement. Blood hasn't stopped and I have only had a few days of passing normal stools before it goes back to pieces (I don't really get D but C) that aren't easy to pass.

I was diagnosed after my first pregnancy but I was able to use Rowasa during it to get it under control. This time with no luck. I flared horribly post partum and it took me a year to get things under control. Thinking about going through that all over again with a 2.5 year old and a new born makes me have panic attacks.

I'm so confused...I did everything I was supposed to to combat the flare and nothing is helping.

Remicade is absolutely the safest option for you at this point. Prednisone is not great for the baby or for you. Remicade is VERY VERY safe during pregnancy and breastfeeding - the molecule is too large to pass through the placenta or into breastmilk (see infantrisk.org). There are timing issues, though, if you are late into your pregnancy.

What does your partner think about all of this? The steroids are undoubtedly clouding your judgment on things. You should get your OB and your GI talking with both you and your partner to help make the best decision.

{{{{HUGS}}}}

kazbern - thats exactly how I feel about timing. From what I've read they stop infusions around 30-32 weeks because of it passing the placenta and then resume post partum around 40/41 weeks.

My husband thinks that the steroids will eventually get it under control but I don't think he understands how rough they are on me...no sleep, anxiety, fog head, etc. I want off of them asap. We are both very concerned about starting Remicade this late into the pregnancy for a number of reasons. I am open to it post partum. I would love to have this calm after the baby is born.

I keep wondering if Uceris could help...anything but prednisone. Plus the pred has never been my "i feel better in 24 hours" drug and tapering has never been easy for me...this will be my 3rd round since diagnosis.

I have a flex sig at 4 pm today to see what is going on inside and I am sure we will discuss all options. But this forum has been my foundation for this disease and treatments (my GI never even knew of SF Rowasa). Reaching out to you guys helps me balance this mess of a disease.

I definitely will.

Has anyone been pregnant and had these types of issues getting things under control? Or their body's reacting differently to meds that once worked?

@TotesMagotes : Just wanted to give a suggestion. It is very early days for us to declare any victory. My daughter who was in consistent flare till Dec 2014, had her FMT last month and so far has not any blood in stools (one day exception when she had constipation). We still have not checked her labs yet as it is too soon. Remicade may be dangerous when you are pregnant for the baby. I would consider FMT instead.


PS: We started FMT for my daughter just last month. I can not consider one month of blood free formed stools as remission yet. Her abdominal pain is still there. But at the same time there has been some improvements. When you are pregnant and between Remicade and FMT, I would say FMT is more safer for the baby. Just my 2 cents.If it works then you may be in remission with just one FMT infusion.

Post Edited (kamakya) : 1/29/2015 10:39:59 AM (GMT-7)

I appreciate everyone's input. I am open to anything that is safe for me and first and foremost the baby.

I'm curious if anyone else has had these issues while being pregnant. I know the rule of thirds and I am unfortunately in the 1/3 that gets worse. Especially since I was in a great remission for over a year prior to getting pregnant.

The more research I do on Remicade I don't think I would even be eligible by the time approvals came thru since I m 30 weeks already. FMT is something I have heard about but never looked into.

I need off these steroids before I mentally lose it. I just can't put myself in a position to get even worse while I'm pregnant. It's so much harder when there is someone else's well being thats more important to worry about than your own.

Thank you for all of the replies. I have felt so awfully alone the last few weeks. Its been a really rough time for me. My husband is being as supportive as he can be and I am grateful to him for that but sometimes family and friends don't get how much this can beat you up - mentally, physically and emotionally :(

I am missing anything else I can do topically?? I've tried Rowasa, SF Rowasa, Cort Enemas, Cortifoam, Hydrocort supps and Canasa. I've spaced them out, switched them up, daily, nightly, etc. Everything seems to make the bleeding, cramping, frequency and tenemus worse.

The last 36 hours I am literally only passing mucus with a tinge of blood. What does that even mean??

If the steroids are making you crazy it is definitely time to stop.

For some people, a liquid diet like Ensure or other meal replacement drink can induce remission about as effectively as steroids. That might be the lowest risk approach at this point, but I think it will be challenging to get enough calories that way. Your baby might be born a bit small....but the steroids have probably pushed the baby's growth a bit so maybe it all evens out. You really need to have your OB on board.

Aside from the misery of multiple bms, are you able to eat in this flare? Are you losing a lot of liquids or blood? Are you currently anemic? If not, maybe just living with the flare is an option. It might trigger early labor....and again, you need to have your OB on board to make sure everyone's ready for a preemie. It might be time for a high risk OB at this point.

Pregnancy changes a lot of things. UC flares are hard to manage sometimes and I'm sorry that pregnancy has made this even harder for you. I found that my asthma became a stubborn beast during my 2 pregnancies but my IBD was quiet. Who knows.

FMT can be VERY dangerous while pregnant. The stool screening protocols are not ready for a pregnant person, sorry kamakya. Fecal matter can start diseases you haven't even heard of yet, and the donor hasn't yet experienced. The Microbiome is little understood. That said, a probiotic/ antibiotic might be helpful, but it's a long shot. Try to call or get into a major IBD center that deals with pregnancy- you need a real pro right now, and time is not your friend.

Katmom said...
FMT can be VERY dangerous while pregnant. The stool screening protocols are not ready for a pregnant person, sorry kamakya. Fecal matter can start diseases you haven't even heard of yet, and the donor hasn't yet experienced. The Microbiome is little understood. That said, a probiotic/ antibiotic might be helpful, but it's a long shot. Try to call or get into a major IBD center that deals with pregnancy- you need a real pro right now, and time is not your friend.

On the contrary, antibiotics can worsen and cause infections. FMT (assuming the donor is healthy) can reverse those issues, UC included. But yes, one must take caution while on prednisone.

if it's constipation that's causing the pain, have you been taking a stool softener and/or a laxative to keep things moving? Constipation is often a problem during pregnancy anyway; your OB and your GI should be able to offer reasonable solutions to this part of your problem.

Do you have any help at home with your toddler?

I was lucky enough to be in remission throughout my pregnancy. But I also flared post partum and have never really been able to control it properly. I also am not responding the meds the way I used to after pregnancy. Something has changed in my body. I used to respond to pred straight away and now it takes about two weeks and is getting less and less effective.

I'm also 30 weeks pregnant and recently started to flair, I was diagnosed with gestational diabetes and was put on a high fiver/ high crab diet which upset my colitis. Most of the time my colitis is pretty mild and I can go months without my meds and as soon as I get the warning signs, I take a few salofalk packs and things settle down pretty quickly.

I have found this time whilst pregnant my meds are not having the same effect either, its been several weeks now of blood, D and mucous which hasn't settled down yet and I have had a iron transfusion today because of anaemia.

Its very unusual for me to not respond to my meds so perhaps its normal for our bodies to be more resistant whilst pregnant, I don't really have any advice with regards to diet or meds apart from saying that any vitamin/ iron supplements are a big no no for me but they have affected me from the beginning. Try to get as much rest as you can and not to stress too much. I hold on to the fact that I haven't got long to go and if I do go into labour early, the chances of my baby being fine are pretty high.

Good luck with your pregnancy, I hope you get things under control soon x