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Crohn's Disease
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Posted 4/12/2010 1:50 PM (GMT 0)
I was diagnosed in 2007, but I've never stayed on medication for very long. I realize now that I have not been taking Crohn's as seriously as I should have. Since giving birth in 2009, I have started having a flare up that has slowly, but definitely become worse. The past four weeks I have been so weak I am unable to take care of my 11 month old daughter. I have been extremely nauseated, vomited a few times, been achy, and had mild fevers. My pediatrician would not give me an ok for taking Asacol or anything similar while I'm breastfeeding, but my GI doctor says that she has patients who take it while bf. I am already kind of "against medication" so I just accepted the pediatrician's recommendation until I became very sick. I'm receiving pressure from everyone I know, including my husband to wean, but my daughter will not take a bottle at all, and we have been unable to get her to take cow's milk or formula in a sippy cup. Should I just ignore my pediatrician's warning and take medication? I'm having a difficult time deciding what to do, but I'm afraid for my health. I'm hoping for some advice from breastfeeding moms with Crohn's if possible. Thank you.
Posted 4/12/2010 2:11 PM (GMT 0)
I think meds are very much needed with this disease. I personally learned the hard way what happens when you don't treat this disease, and believe me emergency surgery was not pleasant. That being said, I do believe we have a few mom's on this very forum that have taken Asacol or Pentasa while breastfeeding, hopefully one of them will be along soon. Hugs!
Posted 4/12/2010 2:14 PM (GMT 0)
What about Remicade or Humira?
Posted 4/12/2010 2:43 PM (GMT 0)
I don't really know anything about Remicade or Humira. My GI doctor has never mentioned these. I've only been given the option to take Asacol or some other form (I forget the name). I really dislike my doctor, and am in the process of looking for another. I did look up those two medications and it says nothing is known about the effects on breastfeeding. Maybe that's why I was never offered either one. I don't know.
Posted 4/12/2010 3:51 PM (GMT 0)
I wasn't on medication while breastfeeding and actually had to give up quite early with my first daughter because I got ill and my parents took my daughter for a few days. Pumping just wasn't enough to keep up production. But, if you continue down this path, you won't be any good for your baby or yourself. You can't take care of anyone if you don't take care of yourself first.

I watch 2 little ones for a friend and when it was getting close to the end of her maternity leave with the last one, she wouldn't touch a bottle either. This was going to be a problem. We just had to stay strong and hold off feedings a bit until she was really hungry. We tried about 5 or 6 different types of nipples until we found one she liked and eventually she would take a bottle for a few feedings a day. At 11 months, your daughter could be on solid food and just taking a few bottles a day. The little girl I watch is 8 months now and she has 3 baby food meals a day and 5 feedings of breast milk, either bottle or nursed. Can you try to sub in one bottle feeding when your daughter is really hungry? perhaps first thing in the morning?

What would you do if you got so sick that you ended up in the hospital?
Posted 4/12/2010 8:37 PM (GMT 0)
It sounds like you really do need treatment to control the flare. Perhaps a short course of prednisone or Entocort might do the trick. I know that many doctors are comfortable prescribing these during pregnancy, although offhand I don't know the guidelines for breastfeeding. If you want to avoid medications, another very safe treatment option that would not be problematic during breastfeeding would be the use of enteral nutrition (use of a special liquid formula diet for a few weeks to induce remission or using it in conjunction with regular food and beverages to help maintain remission). If it's going to work for you, you'll generally see considerable improvement within the first 10 days, so you would likely be feeling better just about as quick as you would with prednisone or Entocort.
Posted 4/12/2010 8:45 PM (GMT 0)
You need to do your own research. I BFed my daughter for 15 months on Pentasa with no problems and that is very similar to asacol. ALL indications are that it is safe. Many meds also don't pass through breastmilk.
There are many safe meds to take. Pediatricians are not the experts on this. Talk to a Lactation Consultant who has Dr. Hale's book or go to his website and search yourself. There's no reason for you to have to wean or get sick. You can safely take care of both of you.

I'd post links, but my daughter is up from her nap. Nevermind, here's one:
http://neonatal.ttuhsc.edu/discus/messages/53/877.html
Posted 4/12/2010 11:27 PM (GMT 0)
I b/f'd all 3 of my children while taking all of my meds (asacol, prednisone, nexium, and remicade then humira). Asacol is really pretty benign. It is made to break apart and be absorbed by the large intestine/colon having a localized effect instead of a systemic effect in your body. Dr. Hale says it is safe to use while breastfeeding. I took 8-12 pills a day while b/f-ing my kids. Also, because your daughter is 11 months old she is nursing less than an infant because she is eating solids - so the risk of her being exposed to your meds is even less. I highly recommend getting on meds to get your flare under control and you don't have to wean if you don't want to. Just check out your meds. The ped only told you that because (s)he doesn't know enough to tell you. My kids are now 6, 3 &1/2 and 15 months and all are healthy and smart kids. Good luck and Keep us posted!!!!
Posted 4/13/2010 12:35 AM (GMT 0)
As Stef points out too, at 11 months you can time your dose for bedtime, so it will be mostly out of your system before the next nursing session.
Posted 4/13/2010 1:26 AM (GMT 0)
Dear BeCool--GO TO YOUR GI IMMEDIATLY!!!!!

If you don't like him, then find another. But you need to treat the disease. PLEASE, please listen to me. Today I get to celebrate TEN WEEKS I'm the hospital. My preemie is still in the nicu and my family at home is falling apart--all because I ignored my disease and a doctor who said he "knew" crohn's disease.

You will not do you or your family any good if you cannot function at home or if in the hospital. If you want to try asacol again it is ok to breastfeed. The only thing to be concerned about is if you are on a high dose. And even then the only "side effect" it MAY have on the baby is D. MOST crohn's meds are ok to breastfeed on. If your pediatrition or gi have any questions, have them reference Dr. Hale (breastfeeding expert mentioned in earlier post) and Dr. Sunanda Kane. Dr Kane is THE expert on women, childbearing, and IBD.

And if for some reason you have to wean, just be thankful for the time you had--almost a full year. Unfortunatley I have only had a handful of unsuccessful attempts. My son was born two months early--too early to know how to suck, so could only be fed by tube. Now that he is eating a little by bottle and starting to get the hang of nursing my meds ate changing and they are the ones truly not compatable with bf'ing.

For your sake and the sake of your family--go to the doctor. Good luck.
Posted 4/16/2010 11:48 PM (GMT 0)
Hi there,
I haven't been on this forum for months and came upon your post today so sorry for the late response. You may already have come to a decision.

I know what you are going through. I tended to worry more during pregnancy about medications because I felt so great I didn't see the point of it. But with all three pregnancys (have four children, third were twins) I flared horribly about six weeks after birth. After my first I was hospitalized for two weeks and didn't nurse him for three days (105 fever and all the other lovely things associated with crohns) while waiting to be diagnosed. One day after my diagnosis I had enough energy to pump and pumped for five days with zero milk production so had to give it up.

I flared after the birth of my next three. I nursed my son for 12 months while taking pred. and asacol. I nursed the twins for 14 months while taking 75 mg of 6mp before bed and entocort. My pediatrician, pharmacist and GI doctor had no problems with this.

Ultimately I think it is a choice of what you are comfortable doing. I came across many people that were horrified that I nursed on these meds. But I was and still am fine with nursing on these medications.

Your child is, at this age probably going longer between nursing so you can time your medication. I always took mine (except pred.) before bed when they would usually go 5 or 6 hours without feeding. And pred. is safe to give newborns and because it kept me up at night I took it in the morning!

Oh my Gosh! Sorry this is so long! You are so very fortunate to have been able to nurse as long as you have! I hope it all works out for you! I know what you are going through and my heart goes out to you! Hang in there! I flared after weaning too. But now that I am two years out from nursing and babies I have been flare free for one year and two months! But I still take my meds because you never do know when a flare will hit you!

Sally
Posted 4/17/2010 4:18 AM (GMT 0)
We must have been in the same boat! I was breastfeeding my daughter who was born in october 09, I basically went off all meds even though all my dr's (OB, Pediatrician, GI) told me that the Mesalamine drugs were okay to breastfeed with (I believe they were all Cat B). When I had my last colonoscopy the end of Dec (I was flaring really badly) I was dx with CD and my GI wanted me on imuran, however that was not safe for breastfeeding. I had a difficult choice to make. In the end I decided that my daughter needed me to be able to care for her w/o relying on family members to help 24/7. I stopped breastfeeding, however I had saved up enough milk for a months supply in the freezer so she was able to continue for a while longer while we transitioned between breastmilk and formula. My daughter was able to do both bottle and breast from day 1 so I think that's what made it the easiest (she didn't have any nipple confusion).

Right now I'm still flaring, but it's my normal flare that's been going on since Oct 08. Some days it's bad to where I can't even get out of bed or lift my daughter up. I can't do so many things because of how this CD has affected me. That being said, I believe CD needs to be treated. If you are flaring this badly then you need to at least get it under control, once it's under control then maybe you could go off some of the meds. Good luck with everything. I wish you the best!
Posted 4/18/2010 7:11 PM (GMT 0)
Hi, really sorry to hear you are unwell.
Definitely start taking meds before it gets worse and believe me it will get worse unless you start doing something with it.
I have been taking Pentasa and Entocort my whole second pregnancy, stopped the Entocort asmy doc seememed to think it would be better not to take it whilst breastfeeding. Continued taking Pentasa and breastfed with it for a year. Was told it was no problem and I have a healthy 13 month old girl.

I have an experience how I felt with no meds and caring for a small baby just before I was diagnosed- was diagnosed when 32 weeks pregnant and flaring after birth of my son,including 3 toilet visits per breastfeeding session and joint pains,not nice.

Hope you get better soon !
Posted 4/20/2010 1:02 AM (GMT 0)
I took Pentasa the entire 19 months that I nursed my daughters and had absolutely no problems. I did cut back my dosage when I was pregnant and while nursing. She is fine, too. She is 3 1/2 now. I should've re-upped when I was done nursing, but I was doing so well that I didn't. I paid for it a year later with a Crohn's-related arthritis flare which is not back under control. My husband is a pharmacist and he was completely comfortable with my using the tapered down dosage of Pentasa while nursing and pregnant.
Posted 4/20/2010 1:04 AM (GMT 0)
Correction: My Crohn's is now back under control. typo above
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