Pregnant and need support

I am looking for input from anyone with anything to share.
I am 18 weeks pregnant as of today and up until last week things were going superbly. However, last Friday we had a company BBQ lunch and I overstuffed myself. It seems to have caused a bit of a flair.
Spent all day yesterday in emerg being rehydrated and given pain meds. Still not eating and having pain on and off. I am tender to the touch and occasionally have pain which is unbearable and seems to come in waves. Those waves, depending on the level of the pain, also bring on vomiting....

I lost my last 2 pregnancies due to being so sick with the Crohn's so this is my first pregnancy which has gone beyond 8 weeks.

My last flair was on 02 and I am currently on 0 meds for the CD. Waiting to get into my gastro and and a wee bit worried.

Looking for input / feedback / reassurance etc... Have you had a successful pregnancy during a flair? Is this possible? What complications may I experience?

Post Edited (Timnlay) : 1/18/2010 5:22:09 PM (GMT-7)

Congrats on being pregnant!

I have been in your shoes twice! I flared badly through both pregnancies with obstructions, bleeding, insulin dependent gestational diabetes, and a heart condition too!

Both times when I was pregnant I ate the EXACT same foods almost daily for the whole nine months. If you are flaring and are at risk of miscarriage I strongly suggest you make a radical change in your diet even if you aren't crazy about the food.

What I did to get through my pregnancies:

Switched to sourdough rye or sourdough white bread which is much easier to digest for us crohnies, cut out ALL sugar products, (org. honey instead, even in baked goods that I made and decaf. tea), absolutely no processed food.

I basically ate mashed potatoes, well cooked veggies, baked sweet potatoes, non-acidic raw fruits or cooked fruits, and sourdough bread with organic peanut butter and jam sweetened with grape juice. I only used real organic butter and olive oil as fats for cooking. If I craved sweet stuff, I made my own cookies and apple crisp with honey.

If you are obstructed, then puree your food. Obstructions were a HUGE problem for me; my docs and I were talking surgery while I was pregnant!

I also took 1 Primal Defence Probiotic daily and digestive enzymes, which helped quite a bit. I strongly suggest you do the same, if you are not already.

I was also on prednisone and pentasa, a proven safe treatment during pregnancy.

My pregnancies were high risk, I nearly miscarried both times with severe bleeding and hemorrhage. I bed rested until there was no sign of bleeding for a few days. It was hard, but I was determined to do everything I could possibly do to bring my babies into this world.

I prayed continuously, I emailed prayer requests to various organizations. If you are a woman of faith, I suggest you do the same. I ended up having c-sections both times, and my first had a bit of trouble at the end, but they are perfectly healthy.

Try to be as calm as possible and set up whatever support you need with family, church, hiring home help or maid, etc.

I wish you the absolute best!

Post Edited (Roni) : 1/18/2010 8:22:02 PM (GMT-7)

Is there a reason you're on no meds? It's safer for the baby if you are taking something (safe) to control the disease.

The reason for no meds was that last year at about this time my immune system crashed out and I got desperately ill. Being that I was on Imuran and it is an immune suppressor I thought I should stop it for a while and let my natural immunities build back up.

 

Stupid??? Probably but.....  Worked out in my favour being that I was off of the meds for about 6 months before conception.

 

I found my Pentasa last night and am back on it. Am waiting for am appointment with my gastro to follow up.

Timnlay -- How are you feeling? Any better? Can you get into your doc soon? As the other posters said, having a healthy mom is the best way to have a healthy baby. Meds are usually needed for that and so many are okay. It may sound scary but many meds are less risk to the baby than a flare. Something like imuran may take too long to help you again now. Pred is fine and often used for pregnancy flares. Pentasa and others are safe for maintenance and minor symptoms. There are other safe ones too, I think Stef 17 probably mentioned Humira and Remicade.

Make sure your GI knows you are pregnant and stays on top of any changes. I know I call and clear things with my GI before each pregnancy. That way we go in with a plan of what meds to stay on and what to do with a flare if it happens. What is your OB saying (you're just around the 20 week ultrasound stage aren't you)? They probably know less about CD, but will want to monitor you more closely or refer you to a specialist if your flare gets bad. Hang in there and keep us posted.

Be pushy if you have to Layla. Make sure they know you're pregnant and flaring. My GI normally has long waits, but got me info for an emergency spot right away once they knew the whole situation. Glad you are improving with diet changes.

you should go on some meds...i have two little ones and was on 6mp the whole time for both pregnancy's and they are perfect! my first dr told me to have an abortion and then i spoke with my crohns dr at ucla and he told me 6mp is fine to take during pregnancy. I also ate like a pig for the first time in years cos my crohns never flared....60 pounds for each pregnancy!!

Hi Timnlay! I am 24 weeks and feeling a little flarish myself. I have tenderness where I think my terminal ilium is (not sure of the location since my belly has been transformed for me!) I've also had the worst constipation (so of course I'm worried about obstruction). On top of that I've had some sporadic vomiting. Not to mention I had a slight cold two months ago and I am STILL coughing.

To make matters worse, I moved to Japan right before we conceived. (This was definitely a surprise baby. We had two miscarriages in 2008-09 and decided to quite trying.) Anyway, I'm having difficulty finding a doctor who I can communicate effectively with (GI and OB/GYN). For now the baby is measuring where it is supposed to and my belly and breasts continue to grow. So the OB says not to worry--even though I lost 5 lbs during the first trimester and have only gained 1/2 lb since.)

All this to say--You're not alone. (And don't feel too bad about not being on meds right now. For various reasons I came off my meds and then found myself pregnant. Now I need them. But we can't change the past and can only go on from here to find answers and relief.)

Good luck at the doctor's office. I am going to see a new GI the first week in Feb. Keep your fingers crossed! And please feel free to contact me. I am sure we have some of the same questions and concerns.

Hey gang....

So I saw my gastro last Friday and he put me back on pentasa full time and also prescribed Entocort...  I am scared!!!  I have found nothing good or positive about pregnancy and Entocort on the web.

Anyone taken this during their pregnancy?

I can handle the pentasa, I know it is safe, but the other??!?!?  I do not want to end up back on pred as the effects on my body are way to harsh but....

 

Pred has been tested and shown safe for decades. Entocort is even better because you get fewer side effects. I wouldn't be worried about that at all. Just let it work and get you feeling better. I think I told you before I was on Pentasa last pregnancy and this one. My back up is pred, and that has never been a concern. Good luck!

**Update**

Went to pick my prescriptions up at the pharmacist today and when I asked for her to consult on the Entocort she went 3 shades of pale....

Said she would have to be on her death bed to take it during pregnancy.

There have been 0 clinical trials on humans and has been noted to cause birth defects in rabbits and rats.....

Sooooo, holding off on taking that drug. I actually left it at the pharmacy cause @ $200.00 for something I will likely not take is crazy.

Time to call my GP and OBGYN... fun fun!!

Timnlay,

If you are worried about Entocort, why not go on a lower dose of pred? The lower doses are easier to deal with than the high doses.
I went on about 30 mg for a couple of days, then down to 25, then tapered to 12.5 mg for the remainder of my pregnancy.

I tapered very very slowly starting at 6 weeks post partum until I stopped altogether at about 5 months pp.


Maybe try 20mg or 25 mg of prednisone to start and taper down to about 12.5 mg for the remainder of the pregnancy. It worked for me (along with pentasa).

How are you feeling otherwise?

I wish you the best.

It's not about not being on meds. I have no problem taking meds which I know are safe but the Entecort is scary. Skeletal defects in rabbits??!? Ya, I think I will pass.
I have lived 37 years longing to be a mother and now my dream is coming to fruition and I cannot put my baby at risk like that.

The only reason I have tried to stay away from the Pred is that it hates me, or I hate it.... I become dependant way to fast. Get arthritic in my joints. Gain excessive amounts of weight... More than most I think... Last time I was on it I gained over 70lbs in under 3 months.

If things do not settle soon with the pentasa and a mindfull diet then I may resort to the pred, I just really want to avoid that!!!

Thank you ALL for your input and support. I cannot begin to tell you how good it feels to know you are not alone...... :o)