Pregnant and need support

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Timnlay
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Date Joined Feb 2003
Total Posts : 231
   Posted 1/18/2010 4:40 PM (GMT -7)   
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)


isergodur
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Date Joined Jan 2009
Total Posts : 831
   Posted 1/18/2010 5:19 PM (GMT -7)   
(((((( Big hug ))))))

Don't have advice sorry :(
25 year old female
Diagnosed with :
Endometriosis march 2007
Anxiety disorder august 2007
CD/UC they dont know witch October 2008
Autoimmune Hepatitis in July 2009

Medication - Humira, Asacol, Cipralex and Cerazette.
Past medication Remicade, Imuran
My wonderful dogs :) ~ www.poodle.is ~


Roni
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Date Joined May 2003
Total Posts : 2480
   Posted 1/18/2010 8:19 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)


inflamed
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Date Joined Nov 2005
Total Posts : 1340
   Posted 1/18/2010 9:12 PM (GMT -7)   
I'm on my phone my phone and can't post much now. Wanted to tell you I'm a week and a half ahead of you, and understand how you're feeling. You need to get to your GI and assess the situation. You may need sone meds, but many are safe during pregnancy. I had a mini-flare at 12 weeks we all thought. Turns out there was no active inflammation and it was most likely something irritated my strictures. Keeping on my maintenace meds just in case and eating carefully has me back to normal. Keep us posted on your condition and I'll pop in later to read your whole post.
Mom to a healthy Pentasa baby and pregnant with #2. 5+ years remission, woo hoo!


Rider Fan
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Date Joined May 2008
Total Posts : 1445
   Posted 1/19/2010 7:39 AM (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.
33 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. Proferrin iron pills.

Tried SCD, didn't work, now avoiding gluten and dairy.


Go Saskatchewan Roughriders!


Stef17
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Date Joined Feb 2003
Total Posts : 1811
   Posted 1/19/2010 11:13 AM (GMT -7)   
I was just going to ask the same question about meds... I have had 3 successful pregnancies, but all while taking my meds. I'm sure your GI might be hesitant (you too) to put you on something now, but seriously... I KNOW there is SOMETHING you can take that can help calm this flare and not harm the baby. If you continue to flare you could really compromise your health and eventually the baby's. Most maternal/fetal medicine specialists will tell you that healthy mom = healthy baby. I agree with Roni that if you can do anything to modify your diet it would be a good idea. I personally follow the SCD when I am flaring badly. You might not be able to follow it all the way since you are pregnant, but elminiating the sugars and complex carbs should help you quite a bit.

Call your GI's office and really badger them into seeing you as soon as possible. Do they know you are pregnant and flaring? Don't worry too much about the baby. I'm sure your peanut is just fine. The great thing is, the baby will take all of what (s)he needs from you and YOU will be the one to suffer. :) If you get too depleted and then the baby has nothing to take, then there could be a problem, but it sounds like you are on top of things and being very proactive. Try to rest as much as possible and get in to see your GI ASAP. Please keep us posted. My thoughts are with you!

Stef

Timnlay
Regular Member


Date Joined Feb 2003
Total Posts : 231
   Posted 1/19/2010 1:58 PM (GMT -7)   

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.


FunGuy
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Date Joined Oct 2009
Total Posts : 1070
   Posted 1/19/2010 2:12 PM (GMT -7)   
As far as immunity a strong sensible dose of Vitamin D3 works wonders for that. Ask your doctor what is safe. Eat sensible as possible and try to relax, meditate. This is all I can think of but as my screen name implies I have never been in your situation.
Good Luck
 


inflamed
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Date Joined Nov 2005
Total Posts : 1340
   Posted 1/20/2010 1:33 PM (GMT -7)   
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.
Mom to a healthy Pentasa baby and pregnant with #2. 5+ years remission, woo hoo!


Timnlay
Regular Member


Date Joined Feb 2003
Total Posts : 231
   Posted 1/20/2010 1:44 PM (GMT -7)   
Apparenlty no referral has been sent in to my gastro so I have to go back to my GP this weekend and make sure that gets done.... Was advised when I called the gastro yesterday that their waiting list is long. Thinking of trying to find another specialist that is closer to me. Will discuss that with my OB on Feb 8th when I see her again.
 
Have been on plain rice which has been ok and introduced soda crackers today, so far so good.
 
Work has been good and have been letting me leave early which has been allowing me to nap. Which is both good for a healing belly and a growing baby.
 
No bloody stools. Vomiting has pretty much ended. Just rolling cramping pains that come and go. Taking pain meds when needed and stayin on top of my pentasa.
 
Can tell I have a ways to go but I am def a little bit better than I was on Sunday. Baby steps I guess.
 
Thank you all for your support. I cannot tell you the comfort I find in not being alone and peace of mind is priceless.
 
Layla.

inflamed
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Date Joined Nov 2005
Total Posts : 1340
   Posted 1/20/2010 6:44 PM (GMT -7)   
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.
Mom to a healthy Pentasa baby and pregnant with #2. 5+ years remission, woo hoo!


Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 1/20/2010 7:43 PM (GMT -7)   
Timnlay,

Inflamed is right, if you want to get into a doctor quick, tell them you're high risk pregnant with active crohn's disease and you've lost two previous pregnancies because you didn't get your illness into remission quick enough. A doctor can always make room for a 15 minute patient and get you a prescription for some prednisone or pentasa or something.

Are you taking a prenantal vitamin? I took Jamieson Brand. They were more natural and great for me.

Soda crackers are processed and they're made out of wheat, so you might have a problem with them.

Instead of crackers, try some sourdough rye or sourdough white bread, toast it with some organic butter and org. light honey. It'll be easier to digest. Sourdough bread tastes the same.

A natural diet that is generally easier on the tummy for CDers and healthy for your baby includes: well-cooked veggies like potatoes and sweet potatoes, raw veggies (as tolerated), non-acidic fruit like bananas, red delicious apples, unsweetened applesauce, chicken breast, turkey breast, low mercury white fish like SkipJack tuna, rice, brown rice pasta, sourdough bread or sprouted bread, organic peanut butter, butter, olive oil.

Be weary of ready made food in a box, bag, can, jar, or frozen. The chemicals in these foods might cause you a problem.
Some organic processed food might be okay, but watch the wheat products unless it has sourdough in it.

Best wishes and keep us updated.

mindyiac
New Member


Date Joined Jan 2010
Total Posts : 15
   Posted 1/20/2010 8:08 PM (GMT -7)   
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!!

Timnlay
Regular Member


Date Joined Feb 2003
Total Posts : 231
   Posted 1/22/2010 2:01 PM (GMT -7)   
YAY.... Got an appointment with my gastro specialist for next Friday. Very happy about that.
 
Overall feeling 1000% better. Moved up from rice to chicken soup and onto white toast today and so far so good.
 
Keep you posted.
 

CrohnieYogi
Regular Member


Date Joined Oct 2006
Total Posts : 367
   Posted 1/24/2010 5:33 AM (GMT -7)   
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.

inflamed
Veteran Member


Date Joined Nov 2005
Total Posts : 1340
   Posted 1/25/2010 11:32 AM (GMT -7)   
Timnlay -- Glad you have an appt and are feeling better! Keep us posted.
Crohnieyogi -- Congrats on the baby. Sorry you are flaring now. I'm about a month behind you (just over 20 weeks). Glad baby is measuring right on. Hope your new GI helps.
Mom to a healthy Pentasa baby and pregnant with #2. 5+ years remission, woo hoo!


Timnlay
Regular Member


Date Joined Feb 2003
Total Posts : 231
   Posted 2/1/2010 9:26 AM (GMT -7)   
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....
 

fruitgirl
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Date Joined Feb 2009
Total Posts : 7150
   Posted 2/1/2010 9:38 AM (GMT -7)   
(popping in from the UC forum)
My understanding of prednisone (so entocort should be even safer, since it's not supposed to be systemically absorbed as much as prednisone) is that it's only a real concern in the first trimester, due to increased incidence of cleft palate. So you're what, 20 weeks now (yay, halfway!!!), so you're well beyond the concern for that. I know there are women on the UC board who were on prednisone during pregnancy and had totally healthy babies, so you should be fine!

If you want to read a good article about IBD and pregnancy (it covers the safety of the meds, even through breastfeeding), go to the UC page, and open the "sticky" thread titled "UC resources" at the top of the page. In there is the link to the article.

Hope the rest of your pregnancy is smooth sailing!
Co-Moderator, UC Forum
Status: Remission since May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son
Diagnosed with pancolitis on 1/30/09
Meds: Apriso (4 0.375g pills ONCE!! daily), mesalamine enema twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, multivitamin.  Used prednisone (starting dose 40 mg) to get into remission.
 
 


inflamed
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Date Joined Nov 2005
Total Posts : 1340
   Posted 2/1/2010 10:01 AM (GMT -7)   
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!
Mom to a healthy Pentasa baby and pregnant with #2. 5+ years remission, woo hoo!


lele91
Regular Member


Date Joined Mar 2007
Total Posts : 26
   Posted 2/1/2010 12:17 PM (GMT -7)   

Congrats & Good Luck!  I am a bit ahead of you at 29 weeks right now. I have been on Pentasa & Remicade throughout my entire pregnancy and I have not had any Crohn's related issues. If I can keep my preeclampsia in check now that I'm on bedrest everything should be fine.

I just made sure to have a high risk OB follow me closely and followed up with my Gastro every other month.

 

 

 

 
36 yr old female
Dx 2/04, symptoms since 1999
Gallbladder removed 1/04, resection 3/04
Currently on Pentasa & Remicade   


Timnlay
Regular Member


Date Joined Feb 2003
Total Posts : 231
   Posted 2/2/2010 10:35 AM (GMT -7)   
**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!!

joohana
Regular Member


Date Joined Feb 2009
Total Posts : 66
   Posted 2/2/2010 3:06 PM (GMT -7)   
Timnlay,
I realize that you are feeling bad and that you wanted to avoid medication in pregnancy, but definitely is true that a healthy mother means a healthy baby.
In our case-mother made feel as well as possible.

I had been diagnosed only towards the end of my 1st pregnancy so I was on no medication then, but I have been on Pentasa and Entocort the whole pregnancy and stopped taking Entocort only a week before giving birth in ordet to try breastfeeding.
And I know of mums who had healthy babies even after a severe flare who had to take an awful lot of drugs.

All I wanted to say-the less you worry, the better for the baby and also-the more relaxed you can be the better for the illness cool

All the best wink
Diagnosed with Crohn´s in 2005, 3 surgeries, . Pentasa 2x2, Budenoflak 1x2, 30 yrs old mother of two. Boy 05/2005 and girl 03/2009


Roni
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Date Joined May 2003
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   Posted 2/2/2010 3:20 PM (GMT -7)   
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.

inflamed
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Date Joined Nov 2005
Total Posts : 1340
   Posted 2/2/2010 3:41 PM (GMT -7)   
I can't speak to Entocort specifically, but you can't think about the fact that drugs aren't studied on pregnant women. NONE really are, that's why even really basic meds are still Pregnancy Class B. They just can't safely do a doubleblind trial with only pregnant women. That's why they have to go on reports from women who take it. Anyway, just wanted to tell you not to worry about that part. Talk to yours docs again, but remember to balance the risks (preterm birth, low birth weight) of a flare with the risks of the meds. I bet at this point, you're past the concern for birth defects because so much is already developed. Ask if, perhaps, there is a safer point in your pg to take it.

Hope you are at least feeling somewhat better so you can enjoy parts of this pregnancy. I'm past 20 weeks now and it's going too fast for me.
Mom to a healthy Pentasa baby and pregnant with #2. 5+ years remission, woo hoo!


Timnlay
Regular Member


Date Joined Feb 2003
Total Posts : 231
   Posted 2/2/2010 3:47 PM (GMT -7)   
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)
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