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Crohn's Disease
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Posted 12/28/2013 3:57 AM (GMT 0)
Three months ago I got thrush from breast-feeding. I got a cold and my PCP gave me a week taper of pred to lower inflammation to get fluid out of my ears and sinuses so I wouldn't get a sinus or ear infection and to avoid antibiotics.

The pred made my thrush go systemic and I was hospitalized because the week of oral anti-fungals didn't work and I was worse. It took two weeks of IV anti-fungals and another week of oral to get it to clear up.

Then I got influenza week later.

Then the week after that I got mastitis really, really bad because of the cracking and damage from the thrush. I was hospitalized for 5 days because oral antibiotics didn't work.

All the antibiotics sent me into a really bad flare of 20+ daily bloody BMs. I was put on 40 mg of pred and we tested for c. diff. (thankfully negative - I had it 3 times last year). The MRE showed inflammation in my small bowel and at the site of the draining seton in my RV fistula.

The flare caused an abscess, which they did emergency surgery to cut and drain. Then I went septic and spent the week in the hospital with even more antibiotics, making the flare worse in spite of the pred.

Now, just as the flare is starting to ease up a bit, the thrush has come back full-force in my breasts and I can't do my Remicade infusion tomorrow like I'm supposed to.

I cut back to 20 mg on the pred (under direction of PCP since GI is completely out of touch until end of January), but tonight I started bleeding again. Plus the thrush isn't responding to the anti-fungals and I'm starting to get pretty sore when I pump.

Plus, the draining seton is absolutely killing me. I ended up going to the ER Monday night for IV pain meds (see my other post about pain meds). It's not infected, but it's just inflammation from everything. I haven't had pain for this since it was put in! It was like a pierced ear - no pain, the seton would just slide easily if the know on the outside slid up into the inside. Now, however, I touch it or have a BM and I feel like someone is shoving a sharp stick up my bottom.


I just feel like I am caught in this endless domino effect that keeps going around and around and around in circles.
Posted 12/28/2013 2:46 PM (GMT 0)
Scifigal, I think you should consider stopping pumping and getting the baby on formula. Your health is the most important thing now. Have you used gentian violet to try and keep the thrush away? That may help. I'm so sorry that you've struggled so mightily. You have done an amazing job with providing breast milk for your beautiful baby and she is growing and thriving. Now please focus on YOU.
Posted 12/28/2013 3:18 PM (GMT 0)
Kazbern has a good suggestion. Beyond that, I don't have any ideas, but I'm so sorry you are so sick! I've gone through phases with this awful disease where like you, one thing leads to another and it all seems endless, but hopefully, you will eventually move past this and stabilize. You are doing a great job calling your docs and getting help when you need it. I hope things turn around soon!
Posted 12/28/2013 5:50 PM (GMT 0)
The hardest decision I ever had to make was when I flared after my first child was born. I flared so badly afterwards, but I kept nursing her. I was down to 89lbs and so sick. I had been in and out of the hospital. My PCP was an amazing woman with two daughters of her own and she really understood why I just couldn't stop nursing. But she sat me down and said, "Stef, you're a great mom. You've given your daughter the best of you, but you're suffering physically. It's OK to put her on formula so that you can keep giving her the best of you. She needs a mommy who is healthy." I cried so hard. It was tough on me, but I knew she was right. It was a huge sacrifice for me to give that up, but in the big picture it was the best thing.

I know it's a very personal issue and a very emotional issue, so I hope you aren't offended. I think Kazbern is right. I say that, having "been there, done that". But I also acknowledge that every person has to decide what is best for themselves. I just know that for me, I couldn't see it (because you never can when you're in the middle of it) and it helped so much that my doctor, as a friend, gave me "permission" to do something different. To mother my kiddo in a way I just hadn't considered.

If you want to try Gentian Violet for the thrush, look for a water based one, most have an alcohol base. Hard to find a water based one, but I'm sure you can on the Internet.

You've been through hell. There's so much of it that is beyond your control. I feel for you soooo much because I went through similar things when my daughter was born almost 10 years ago. It was a HARD road, but there IS a better road ahead. Hang in there. Sending prayers your way.
Posted 12/29/2013 3:24 AM (GMT 0)
I can relate that this disease has wreaked complete and total havoc in my life the last couple years. Keep on fighting! Try not to let it get you down. I wish you all the best and hope tomorrow is a brighter day for us all!
Posted 12/29/2013 10:57 AM (GMT 0)
Thanks everyone. :)

Stopping pumping has been on my mind a lot, especially the last hospital with the mastitis and sepsis. I had so many antibiotics going into me that I had to pump-and-dump for a week. With the thrush back (actually, I'm not even sure it went away the first time), I've been really considering it. But I don't feel good about it, though. On Friday I went to a Mormon temple and spent some time in prayer and reflection. I felt very strongly that continuing to pump is something that I need to do. I don't know how to explain it, but the feeling was overwhelming.

Gentian Violet is a good idea. I've had a hard time tracking some down, but I think that I found a Walgreens that will special order it. I've also had a vaginal yeast infection for the last couple of weeks, and so I think that thrush just never really went away all the way the first time (I would still itch on occasion), but all the pred and antibiotics just made it come raring back.

Thanks for listening to me just complain. I appreciate it. I know I've been doing it a ton in the last few weeks. I really have so much to be grateful for. I have a wonderful husband and daughter, lots of love and support from family and friends, and my health really could be so much worse than it is. I have insurance and I live in a place where good care is possible.

James Allen once said, "For true success ask yourself these four questions: Why? Why not? Why not me? Why not now?" I keep thinking that I'm glad it's me that got CD than someone who is a single mother of young children, or someone who lives in a third world country who can't get care. Not sure if that makes sense or not - it's super early and I'm rambling.
Posted 12/29/2013 3:13 PM (GMT 0)
Scifigal,

When I was nursing my little ones there was a great resource in town called "A Woman's Work." They moved their shop but they're still around. You can find them here: http://www.awomanswork.com/. They have lactation consultants on staff who are excellent and you should be able to get Gentian Violet from them. They may have other suggestions for you.
Posted 12/29/2013 6:43 PM (GMT 0)
Thank you!!!
Posted 12/30/2013 1:24 PM (GMT 0)

Sci....I can not speak from being a Mom, but I can speak from the position of someone who puts others first.  I know you have prayed on this, but I hope you will continue to consider ending breast pumping.  I am worried about you.  It seems you and your baby have bonded and you have been there for her so much even at your sickest.  I hope you can heal yourself to make your future time with the little one even more enjoyable.

Please know that cycles do break and there is a time for you.  Take care.

Posted 12/31/2013 10:40 AM (GMT 0)
@habs - thank you, I really appreciate it. I promise I will keep considering it. There are so many pros to stopping, but there are three main reasons that all of the pros can't seem to outweigh: the milk is helping my baby have a strong immune system and body (since she was a preemie and I did Remi while pregnant, she really needs it still), how I feel when I pray about it, and formula is really, really expensive. The last one isn't really as much of a consideration compared to how much hospital bills are, of course, but it still is there. The second I feel okay with switching, I will in a heartbeat.
Posted 12/31/2013 9:56 PM (GMT 0)
You definitely need to take the answers to your prayers into consideration first and foremost. That being said.... IF the time comes that you decide to switch to formula... You don't need to worry that you took remi while pregnant. It doesn't cross the placenta until after 30-32 weeks, so any infusion you had after 30 weeks will have had minimal effect on her if any at all.

And the cost of formula is insane, but since the 90's formula has been regulated by the FDA and all formulas contain adequate nutrition for baby. I always bought the Parents Choice brand from Walmart because it was literally half the price of the name brands. My kids are 9, 7, and 5 and none of them have been sickly or more prone to colds, illness, etc.

Please don't take my post as continued pressure. I am 100% supportive of you going with your feelings on the issue. I just wanted to clarify the remicade worry and offer a more affordable option IF you need formula.
Posted 12/31/2013 10:01 PM (GMT 0)
Honestly, you are super Mumma for continuing to pump through everything you have been through. I think you need to give yourself permission to be ok with easing up or stopping the pumping when you are ready. No guilt needed! Hope you're feeling a bit better.
Posted 1/3/2014 2:45 AM (GMT 0)
Thanks ladies. :) All of the love, support and concern on this forum is incredible. It helps.
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