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06-20-2016, 06:10 PM   #1
danielle.wilson411
 
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How to Stay Positive while Pregnant

Hi everybody,

I have an interesting story regarding my pregnancy. In April 2015 I miscarried my first pregnancy which of course was a very traumatizing experience. It happened at 7 weeks so we were told it is very common. This began almost a year of constant trips to the bathroom or severe stomach pains which would sometimes induce vomiting. I dealt with it until January 2016 when things became terrible and I could hardly make it through a work day without running to the bathroom to either relieve myself or vomit. And keep in mind we were still trying to conceive with no success since May.

I ended up hospitalized in February where I was officially diagnosed with Crohn's. I have been healthy my entire life (hardly even got the common cold) so this was going to be a learning experience for me. I was terrified to say the least. I was put on prednisone right out of the hospital and stayed on that until about the middle of May. It worked wonders. I honestly wish it didn't have the long term side effects that it does because I would stay on that for the rest of my life if I could! And since it did work so well it must have put me in remission because we got a nice little surprise in mid April when we found out we were pregnant! After the year of trying it happened when we weren't even expecting it. We actually had the red light from the doctor until I got my treatment started but life has a special way of working itself out and here I am today.

I am now 14 weeks pregnant and had my last Remicade induction infusion a few weeks past. The problem is, is that I have been terrified/stressed this entire pregnancy. I am so afraid that things are going to end up badly like my first one did. The doctor thinks I may have gone into a flare and that is what caused my first miscarriage but of course we can't say that for sure. Everytime I go to the OB (I had an ultrasound 3 weeks in a row because I was stressed) they tell me that baby looks healthy and that they don't have any cause for concern. I wish I could be that positive!

Has anyone else had a story like mine or got pregnant shortly after a flare and had the same worries I do? I just don't know how to cope with it sometimes. Every little pain I feel I either wonder if its something wrong with the baby or my Crohn's. They do blood work every three infusions and it looks like my inflammation numbers went up a bit the last time I had blood work done (two weeks ago). My GI doctor knows I am pregnant and doesn't seem to be worried so I feel I need to calm down and just trust my body to carry this baby but how do I do that? Any advice from the ladies out there who have been pregnant with Crohns?
06-20-2016, 08:04 PM   #2
Scared1
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Hi Danielle,
I am not pregnant with Crohn's but I was and am still pregnant when my husband was diagnosed with Crohn's (just entered by 9th month). And while I cannot provide advice on how to handle the flares - I can for sure give you my perspective on stress. I swear to you - when he was diagnosed, I panicked so much, didn't know anything, was worried out of my mind. It got so bad that I went to the OB and she kept asking me are you ok, and I was holding back tears constantly, not knowing what the future held for us. I didn't eat, constant stomach pains from worrying (I am naturally an insane worrier so you can imagine), and I couldn't sleep. I kept wondering how much am I hurting my baby unborn daughter - not eating, stressing, but I couldn't remove that feeling of fear of the unknown. I know you probably think I am exaggerating, but it was a shock to say the least and I just didnt know what to do to stop feeling that way and relaxing. But, our body - meaning females - I think are very resilient, and babies are also:-) Women often don't know they are pregnant, and even some are outright neglectful (which is horrible and I am not in any way condoning that) - AND, the baby still develops into its own little miracle. I know you are worried and you are stressed, and I don't think the stress and worry will cause you to have a miscarriage on their own - because if that was the determining factor, I would NEVER have gotten pregnant because my natural state is worrying and being stressed ALL the time! My OB said, as long as you take your vitamins and try to eat protein at least, your baby will be fine and I am sure your will be also. Just try to relax as much as you can (yes, easier said than done), but techniques that help me when I was stress - take long showers, sleep, watch a movie, little things that, although, you cannot stop your brain from thinking about it, it will lesson the focus on it more. Do what you can and that is all that is expected of you in this pregnancy and life in general and take solace in that fact - like you said, life has a way of happening:-) Keep us posted - I am sending positive pregnancy thoughts your way!
06-21-2016, 08:54 AM   #3
caretothepeople
 
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Hi Danielle - just wanted to pass along this info guide from the CCFA on Crohn's and pregnancy in the event that it has useful info.

http://www.ccfa.org/assets/pdfs/pregnancyfactsheet.pdf
07-01-2016, 02:19 PM   #4
JaimeM
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Hey Congrats on the pregnancy! I just saw a post from you, last time we talked you were TTC. I had really bad white coat syndrome when i was pregnant. I was always worried something would be wrong.. I've also had a miscarriage, but also have a healthy little one. Try to do some relaxation exercises, do pregnancy yoga, that really helped me. Remember that you need to do what is best for your body and that will be what's best for the baby. If something bad is going to happen, it will happen regardless if you worry or not. Just have to pray it will be a good outcome I had a great pregnancy when i was pregnant. I had the weird pains and stuff, but probably the best my Crohns had ever been. Good luck to you!
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Diagnosed Terminal Ileum Crohns 2008
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Switched to Cimzia but didn't work 2015
Back to Remicade and added Azathioprine 2016
07-01-2016, 11:18 PM   #5
InkyStinky
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Hi! I'm so sorry about your miscarriage.

I'm almost never on the forum because I have a baby I hadn't flared for years prior to conceiving but my entire pregnancy I had this background worry that I'd lose my baby. I didn't flare and my baby is happy and healthy

Anyway, I only have a min so I only skimmed the other replies but I just wanted to pass on a great piece of advice I got - think it might have been from The Pink Kit (online childbirth prep course)? Anyway, they said that you should ask yourself "what do I want to do now?" Think it was in regards to labor, but really was helpful during my pregnancy. So, I could say "what do I want to do now?" and then do something for myself/my baby - take a gentle walk, do stretches, sing comforting songs (hymns for me), FaceTime with a friend, etc.

They had a pregnancy yoga class at my hospital but by the time I'd thought about going I'd pulled a muscle in my hip badly so that was out the window!

Are you part of any support groups? A church? Meet with any friends/family regularly who make you feel better for having seen them?

Oh, I also read to my baby every night while pregnant.

This prob sounds like I was all relaxed and glowing for 9mths but really I spent way too much time and energy worrying. For me "don't worry" does no good at all. I have to (try to) replace worrying with something else. Have you talked with your GI about what symptoms you should report? Maybe having a game plan would help... so you can say "if this continues for x amount of time or if y happens too I'll call my doc".

Also my OB had a 24/7 nurse call line - have you found out if yours does? Call that if you're worried - it's better to talk through what's going on than to worry if it's something you should worry about!

))Hugs!((

Edit to add: according to my GI the odds of having a flare are higher in the first trimester and postpartum. But not to worry much about pp flares because they could pump me full of all sorts of drugs and not have to worry about baby, lol. Anyway - I was always super confused by weeks/trimesters/different ways of counting how far along my pregnancy was, but you are either in or close to the second trimester, right? Not sure if statistics are reassuring to you or not but thought I'd add that incase they are!
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IBD diagnosed 1990 @ 8yrs old (current dx: Crohn’s); Blood clots 12/2009 (DVT, bilateral PE)
6MP: 50mg/day

Ethel: “So, is everything okey-dokey?” Lucy: “No, it’s inky-stinky” ~ I Love Lucy

-Are you looking for a new treatment option for your Crohn's disease? If so, I suggest you look into the ongoing clinical trial by Qu Biologics for their SSI treatment. Click here for more information or to help spread the word.

Last edited by InkyStinky; 07-01-2016 at 11:32 PM. Reason: adding stuff :)
07-06-2016, 03:59 PM   #6
danielle.wilson411
 
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Thanks for your replies everyone! I wasn't getting notifications that people were responding so I didn't think to get back on and actually see for myself. We are about to hit 17 weeks tomorrow and I had a 16 week appointment and the heart beat is still great and my OB is still not worried about a thing. Only three weeks to go until the big ultrasound where we find out gender so I'm just going day by day trying to comfort myself a little more as time passes. It's reassuring now because I am starting to show but losing it is still in the back of my mind. I won't be meeting with my GI doctor until September so that's a little upsetting because I just want his reassurance that everything is ok how it is now. I know I can always contact him but its just hard knowing whether what I feel is pregnancy or Crohn's problems.

I am definitely trying to keep busy though and stay optimistic and my OB office is great. They offer free nurse visits so I can go in and listen to the heartbeat whenever I want so I always do that right in the middle of when I go for appointments because waiting 4 weeks is just too dang long!

Anyone who's been pregnant find that it was hard to eat healthy? In the first trimester I would try to eat fresh fruit but I found that normally after a few pieces of fruit my body would say "absolutely not"! I am now trying to add salads into my diet but am a little hesitant since I had eliminated all raw veggies right after I was diagnosed but it seems to be working good so far. Just don't want to push it. I know protein is important so I'm trying to make sure I get enough of that in my diet but I find that its hard to eat healthy.

But I definitely appreciate all your guys' help! It's reassuring to hear others stories of successful pregnancies with the disease :-)
07-07-2016, 03:12 AM   #7
Thedreamof2016
 
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I am too worried as well !! Am really worried about the meds that i am taking and the effects on the fetus .. Especially the azathioprine .. I just cant stop thinking and worrying about it
07-11-2016, 10:05 AM   #8
JaimeM
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If it helps, my drs put me on azathioprine bc its ok to be pregnant on. I went to mayo earlier this year and bc we want to have another baby they put me on azathioprine and remicade bc they were the safest to be on while pregnant.
07-13-2016, 11:38 PM   #9
InkyStinky
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I am too worried as well !! Am really worried about the meds that i am taking and the effects on the fetus .. Especially the azathioprine .. I just cant stop thinking and worrying about it
I've been on mercaptopurine (sister drug of aza) for years - was on it my entire pregnancy. My little one has no know health issues and is a very happy baby.

My GI doctor was involved in a recent study about pregnancy and mercaptopurine/aza - I'm sorry I don't have any references for you but she said that the doses used for IBD (very small compared to what's used for other conditions) are not showing any kind of increased risk to the developing baby.

There is a lot of scary stuff about mercaptopurine/aza, but to my knowledge that is all in regards to doses much higher than would be used for IBD.

Anyway, pubmed has encouraging studies like this one:
http://www.ncbi.nlm.nih.gov/pubmed/25939351
"CONCLUSIONS:
Adverse pregnancy outcomes attributable to thiopurine and allopurinol co-therapy were not detected in our case series. Our study provides reassurance for clinicians and patients who wish to continue the thiopurine-allopurinol co-therapy combination before conception and during pregnancy to maintain remission of IBD."
07-14-2016, 12:01 AM   #10
InkyStinky
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Anyone who's been pregnant find that it was hard to eat healthy?
Yes! I found I was ok with veggie juice so I drank (store brand) v-8 juice. I stuck with cooked veggies for the most part - I did eat raw carrots with hummus but I'm typically ok with carrots raw. If you've done well without raw veggies I'd stick with veggie juice and cooked veggies. Bags of frozen veggies are great because it cuts out the pre-cooking prep!!!!

One thing I found really helpful was "the brewer pregnancy diet" template. http://drbrewerpregnancydiet.com/id96.html Although the website says "you must eat at least...." I necessarily didn't hit all the servings of all the categories. I used it more as a tool to help me try to get a bit more variety - of food types, not necessarily of foods. If that makes any sense. So like for "Milk" I would only do yogurt, cheese, kefir, sometimes cottage cheese... and I typically don't do a lot of grains so I wouldn't necessarily eat the 5 servings a day. But having a template with suggested categories/servings helped me. I could see if I was eating a lot of the same category and then try to eat other things as I was able.

If that's something that might help you i think there are apps for tracking brewer diet categories - I just used an old-school paper checklist on my fridge

If it doesn't help you or would make you stress about "meeting servings" just focus on what you can eat without difficulty!!!

Do you do ok with eggs? It really helped me to have hardboiled eggs in the fridge for a quick snack.

So glad your OB's office is great! Baby heartbeats are amazing <3
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