Sheesh. What a learning curve. Question about breastfeeding and UC.

I am at that perfect place in our BFing relationship where it's so fun and sweet and the bonding is just superb. My 3rd DD is 7 months old this week and I REALLY don't want to quit. But I feel like I'm at a crossroads with everything I COULD be taking if I weren't breastfeeding, and my GI called today and is concerned that if my appetite is suppressed for the next month due to the Pred, the baby isn't going to be getting very high-quality milk anyway. Is this true? Isn't breastmilk generally perfect regardless of what the mother's getting from her own diet? She's doing solids now, but I really want to nurse to 12-14m like I did with the others.

How do you make that decision? I'm in a massive, crazy flare right now (probably due to delivering the little angel) and I'm sure all the crazy hormones from BFing and post-partum stuff really aren't helping, but it's really my first bad flare and I didn't know what to expect anyway. I just want to get out of this crazy pain. She's doing fine with the Pred, so I'm thinking maybe just get out of the bad flare with the safe drugs and then go from there? They mentioned Imuran and Remicade on the phone today, and they only diagnosed me two weeks ago. too much too soon? I haven't even really had a follow up after my scope, and I really want to talk about diet and alternatives first. I just feel overwhelmed. Help!

 

wmdcookies, I was diagnosed after the birth of my first child. I know how confusing it all is. In order for us to give you the best advice, it would be good to know more about the colonoscopy results you have.

From your post I gather that you are treating this flare only with prednisone? Did your GI mention rectal meds at all to you? Most UC patients use rectal mesalamine and/or steroids to help control their disease.

It is common to start treatment with prednisone, but then to quickly progress to discussing other kinds of meds. It isn't surprising that your DR talked to you so fast about Imuran and Remicade, but those are not the only options by a long shot. And it's also confusing from your post that you say your appetite is supressed by the prednisone? Most people find that they have increased appetite from this medication - is it the illness that's supressing your appetite? I hope that as the pred starts to work and your flare subsides, your appetite will increase. You cannot take prednisone for more than a few months without significantly increasing your risk of very serious long term issues. So you do need to start figuring out what treatment modality you want to try next.

I would be most concerned about the relationship between your diet and your future bone health. You need to eat a lot of calcium containing foods to provide good breastmilk and maintain your own calcium levels. You can also provide baby with plenty of good calories and find yourself shrinking away to nothing. At some point you are going to make less milk if you are not eating enough food, and then your baby will get mad and perhaps worse, fall off the growth curve. I don't agree with your GI (what's s/he know about breastmilk anyway?????) that you should wean to take different meds because the milk won't be "high quality."

Having breast-fed two past the one-year mark, I also want to ask about your weight. I found that when the darling nurslings were about 7 months old I could not maintain my weight no matter what I ate. After that magical month, though, they start eating more solids and start taking fewer calories from breast milk. So perhaps there's a change coming up soon for you in your nursing relationship too.

I ultimately decided to wean my 2nd daughter at 31 months because I had to increase my meds from 4 Asacol/day to 8. Plus she was getting really annoying at the breast and I needed to develop stronger discipline boundaries, so it was a win/win. Even so, there is a lot of data out there that the 5-ASA meds are safe in breastmilk, up to a point. Some babies get diarrhea from it. Look at this incredible web forum (http://www.infantrisk.com/content/webforum) for accurate information about different medications and nursing. This data was developed by Dr. Hale and is provided via a Texas Tech service.

Well, my experience was completely about rectal bleeding. So it was pretty easy to see when things were improving. The other issues that came along with IBD for me were more subtle and honestly have taken me the better part of a decade to untangle.

I understand how much energy you can get from pred - I personally love prednisone for the euphoria and the high energy. I don't quite understand your month-long plan. You will need to taper off the prednisone over several weeks, depending on where you are right now in your dose. If you are not feeling significantly better after 2 weeks on pred then you should not be tapering yet. The one time I took pred to deal with an IBD flare I started at 60 mg/day and stayed there for 3 weeks, until all the joint pain I was feeling went away (that flare had little to do with rectal bleeding and everything to do with global joint pain). It took me another 2 months to completely taper off the drug.

I became lactose intolerant during my first pregnancy. It was pretty instant and I count that as the first solid symptom of my IBD. Since then I have used lactose-free milk without any problems. I don't even like ice cream anymore for the way it makes me feel. Yogurt has very little lactose and I eat that as much as I can. You can certainly get a lot of your daily calcium from yogurt and hard cheeses and never touch a glass of milk. Prednisone is notorious for causing bone loss and joint pain, so again, start making a plan for when you're off the pred.

You haven't yet said what kind of symptoms brought you to this point (or maybe I missed your first post?) but again, there are many treatment modalities out there other than Remicade. Many GIs have taken to the idea of hitting IBD hard with biologics at the beginning of the disease to achieve a quick remission, and that is a good path for many patients. That doesn't mean its the right path for you. If your GI is stuck on this idea, maybe it's time to start looking around for a DR who fits your needs better. This is going to be a long relationship between you and your GI. I'm on my 3rd and I like this one a lot. It took me 5 years to find him.

Frankly, it's important to get a lot of calcium all the time, especially if you're nursing. Or you could be like me and present with osteopenia when you're 40!

I found your first post. So bleeding and mucous is not normal and should not be tolerated. Chronic inflammation in the rectum will eventually lead to scarring, maybe strictures, maybe worse (rectal cancer!). So please talk to your GI about rectal meds. They are extremely effective and should start reducing the rectal bleeding within a few days.

I would not reduce my prednisone dose on that schedule until I was sure I was getting better. You can decide to stick at 40 mg for a while longer until you notice significant improvement and then start tapering.

And you should read Dr. Hale's info on Lialda and probably start taking it again.

I live in Houston and noticed that you are a Texan. Are you in Houston too?

I'm sure someone can tell you how much your cancer risk increases if you have UC. But I think the message is that it is untreated chronic inflammation that raises your risk, not the existence of the diagnosis on your chart. You are not going to die anytime soon from rectal cancer, but I do want you to focus on treating all parts of your illness. It is natural to try and minimize things like that - we all do it. Now that you've gotten into a more significant flare you have an opportunity to really learn and make changes in your approach that will lead to lifelong health.

It's cold in Houston too!

I see my GI's PA first thing tomorrow morning. I don't know how I could even START to taper right now, as I've had NO change at 40/day. I'm supposed to step down to 30 tomorrow and that's definitely not happening. One day at a time...I got through a horrendous trip to the ER last night and was finally able to nurse her again this afternoon. At this rate I'm just going to try to limp my supply along and do what I can to get out of the flare. It really doesn't seem like there's an end in sight. :-(

Aquafly, "cold" just means we have to trade the flip-flops for real shoes. But what a hassle!

I ended up in the ER last night for IV pred and painkillers because my 40mg pred wasn't even touching my symptoms. It had been doing great, but it seemed to be lesss effective yesterday. I took 20mg in the am and 20mg around 4pm, and by 11pm I was in the bathroom with the worst pain I've EVER had in a flare. (I'm still new to the flaring, but it turns out that what I thought was pain over the weekend was nothing compared to last night.) I was on the toilet with my hips just screaming and my teeth chattering so hard I thought I was going to dislocate my jaw. I've had three babies, I'm no stranger to pain. I had NO idea my belly could feel like that.

My supply seems to be doing pretty good, all things considered. She's doing solids now, too, so I'm less freaked about it than I could be. I'm just putting her off here and there when I feel like I've taken a lot at once, and my doctors seem to be trying to work with me as much as they can. Luckily, she's a fantastically easy baby who really just wants to ride around with me and enjoy the view!

I hope you are feeling better. It sounds like you have had a rough time. I have dealt with similar issues as I have flared after the births of both of my children. With my daughter, my inflammation was limited to the rectum, and I was able to manage my flare with steroid enemas, melamine enemas, and canasa suppositories. The rectal meds seemed safer for breastfeeding, so, although I would have preferred to be med free while bfing, I felt okay about these choices. It seems that the rectal meds can be really effective for some people, so you may want to give the rowasa a try even if the lialda didn't work. If it kept you off the immunosuppressants and biologics it might be worth it.

With my son things were more complicated. I tried all the rectal meds with no success. I took prednisone. (I had to stay on 40mg for two weeks before things started to normalize. I think the longer the flare has gone on, the longer the pred takes.) This seemed to work, but the bleeding resumed on the last day of my taper! My GI wanted me to take Imuran, and I was really resistant as I was determined to continue bfing my son. I had nursed my daughter until the age of two and wanted that option for my son. I tried several other things: SCD, antibiotics, got a prescription for LDN. But I was getting really sick and my milk supply seemed almost nonexistent. I could barely eat. My GI did a colonoscopy, and I had severe inflammation throughout my colon. I had to start another course of pred that day and the Imuran within a week. I had to wean my son pretty abruptly and I still have a lot of issues with this. (He was 8 months at the time.) So this was back in July, and I am feeling almost normal now. It seems like it was the right thing to do. I couldn't care for my children in the condition I was in.

A couple of things I learned that might help...

Don't start a course of pred without a maintenance drug to take over once you are off the pred. This could be mesalamine for some or something stinger for others. Have a plan.

Many doctors told me not to breastfeed while on Imuran. Even the nurse on the infant risk hotline (associated with Dr. Hale) scared me about this. But I did read that these recommendations might be outdated. One doc recommended taking the Imuran at night, pumping in the morning, then bfing as usual. My pediatrician said she wouldn't do it with her kids, but you might want to discuss this with yours. It might not be as bad as it seems.

You might want to investigate Low dose naltrexone. It seems several people on this forum have had success with it. It is an L1 drug, the safest for breastfeeding. I found a doctor to write a script for me, but didn't end up using it as I was too sick to wait to see if it worked for me. I needed to get back on steroids immediately. I had already done one course of pred, so I didn't want to risk getting off of it to find out the LDN wasn't working which would mean I would have to get back on pred again.

Taking Imuran and weaning my son was difficult, but it was the right decision for me. It seemed like the end of the world at the time.

I know this is all overwhelming. The steroids and hormones do make you crazy. I'm glad you have an easygoing baby. That definitely helps! I hope you have some help at home, too.

Let me know it I can give you any more info. Good luck, and I hope you are feeling better soon.