Nothing seems to work.

[eleanorruby]

Hi,

I guess I'm just here to rant a little bit. I was diagnosed at 19, almost 10 years ago, and I've had three flare-ups that were significant enough to land me in the hospital for at least a week. My husband and I had our first child almost four months ago, and at first I was doing well, but in the past month I've really slipped. My weight is down to 87 pounds (definitely not the lowest it's ever been, but certainly not great), and I'm still trying to nurse.

I'm taking Humira weekly, and I've been put back on 20 mg of Prednisone a day, which freaks me out because, regardless of how much I've read about it, I'm afraid it will pass into the breast milk. And still, with all this medication, I'm having urgent, painful bowel movements a thousand times a day. They're never formed. Occasionally, there's blood. I've been trying everything with my diet, drinking two Ensures a day, trying to get more lean protein, stay hydrated, etc, but I just can't seem to kick this. I feel like a leper. At work, I've failed to make it to the bathroom on time twice in the past week alone. I'm too tired to get the exercise I know I need to feel stronger, and it's becoming increasingly difficult to stay awake all day to care for my baby. I'm just so worried I'm going to end up in the hospital again.

Does anyone else have this problem where the medication ceases to help? I don't think I've ever made it through a bad flare without first winding up in the hospital.

 

[Allison M]

:hug: Gosh I can tell you have so much on your plate! I hope things get easier for you. It's hard enough to be a new mom! Hugs and support are being sent to you.

 

[Ali29]

Is it possible to go on FLMA Leave until your GI can get you back under control. So sorry your having such a difficult time. Do you have an appt with your GI set up, sounds like you need to see the GI asap.

 

[Jabo]

I was in a similar situation and tried an elimination diet. I ate nothing that wasn't SCD Legal, FODMAP okay, and part of the high alkaline diet. Well...... that didn't leave much but a few whole foods. But I ate those and got a lot better. I used no seasonings at all of any kind and only cooked in coconut oil. Bought all my food fresh from the grocery store only if it was on the "approved" list and when possible bought organic.

 

[Mondowicked]

Have they tested you for C-diff? When I was first diagnosed this was my main issue. The prednisone made it worse for me. I second the GI visit. ((Hugs))

 

[eleanorruby]

Thanks everyone. I am seeing my GI doctor on Friday morning, luckily, so I'm going to bring up all of these things with him. Sadly, I can't go on leave from work because my husband doesn't make enough money to support us on his own, and we have a new baby to boot.

Also, haven't been tested for C-diff and know very little about it. I've had Crohn's for years, though; would that make a difference?

I was in a similar situation and tried an elimination diet. I ate nothing that wasn't SCD Legal, FODMAP okay, and part of the high alkaline diet. Well...... that didn't leave much but a few whole foods. But I ate those and got a lot better. I used no seasonings at all of any kind and only cooked in coconut oil. Bought all my food fresh from the grocery store only if it was on the "approved" list and when possible bought organic.

I've tried eliminating different foods I see as a "problem," but I've never gone as far as to follow the SCD or anything. Maybe now is a good time to try. I've basically wanted to eat nothing but banana, yogurt, peanut butter, and coconut water smoothies lately, but I can't exactly live on that. I ate a roast beef sandwich a little while ago, and that didn't go over very well. I'm just getting desperate.

 

[theOcean]

It sounds like you might need to get a blood test for low iron/hemoglobin or B12. That might be causing some of the fatigue since you're passing blood.

Is it possible for you to additionally go on an immunosuppressant? I'm sorry that you're suffering so much right now.

 

[David]

I'm so sorry to hear of your struggles

My suggestion would be to look into the clinical trial linked in my signature. I'm not sure if they'd allow a nursing mother in, but it wouldn't hurt to find out.

 

[eleanorruby]

It sounds like you might need to get a blood test for low iron/hemoglobin or B12. That might be causing some of the fatigue since you're passing blood.

Is it possible for you to additionally go on an immunosuppressant? I'm sorry that you're suffering so much right now.

My B12 is fine, amazingly, but my protein and iron are both low, which is definitely a huge part of the problem. I'm certainly getting more than enough of each in my diet, but my absorption right now is terrible (and, yes, I'm losing blood.) Unfortunately, I can't go on an immunosuppressant right now because they're basically a no-no when it comes to breastfeeding, and I'm just not ready to give it up just yet. Of course, if the flare doesn't subside, I might be forced to stop nursing altogether, in which case I think my GI doc will put me on 6MP along with the Humira (I've never tried the combination before, and he says he's had great success with patients.)

As for any clinical trials, I'm definitely out. No messing around with drugs when feeding the little one, I'm afraid.

 

[Jabo]

I've tried eliminating different foods I see as a "problem," but I've never gone as far as to follow the SCD or anything. Maybe now is a good time to try. I've basically wanted to eat nothing but banana, yogurt, peanut butter, and coconut water smoothies lately, but I can't exactly live on that. I ate a roast beef sandwich a little while ago, and that didn't go over very well. I'm just getting desperate.

Banana, yogurt, peanut butter (the less sugar the better, no sugar the best), and coconut water are all very safe foods for me. I also use to go to the bathroom up to 20 times a day. Now only once or twice.

If I can, I would like to introduce to you a few other foods that were really safe for me.

very well cooked carrots, mashed like baby food with grass fed organic ghee
organinc blueberry, banana, and pure coconut milk smoothie
Beef, shrimp, chicken, cooked on fire or cooked with only coconut oil and salt and or coconut aminos. (For chicken, a whole fresh chicken from a good source, salted, and put in a crockpot on "keep warm" for 10 hours turns out sooooo amazing)
Small amounts of sushi rice cooked with only water (like a small handful or very small bowel)
Deseeded and well cooked green bell peppers
tumeric, salt, coconut secret coconut aminos, braggs organic apple cider vinegar as spices
homemade beef bone broth soup
lemons, and fresh made lemon juice in water to make lemon water

For some reason, these foods seemed very safe for me. I could eat these and then know I could always have a safe meal that wouldn't put me in the bathroom all day. For a long time I would only eat a handful of foods. Eventually I healed and was able to add more and more things.

I would also really suggest trying some digestive enzymes. If the first time you take them you get a terrible and I mean terrible pain, it is okay. Just try less. That happened to me and a put me off of them for a long time, but after a while the pain went away less and less and I was healing more and more and bms were better and better.

 

[Whit]

Hi eleanorruby,

I too lost weight alarmingly and got an appointment with a nutritionist who got me on the right diet. Maybe adding this suggestion too all the others offered will help.
Whit

 

[shamrock15]

I am going to mention something I haven't seen here, and although I am male, it was something similar that I experienced when my child was born.

Sleep was crucial for me, and my health was terrible as long as I was doing the night watch. Are you sleeping overnight, or are you doing night feedings? If you can, my recommendation is that you make a deal of some sort so that your husband carries the nights as much as possible. When my daughter started to sleep through the night, my health improved.

You may need to consider remicade or similar medications, and if there is a possibility of transferring to breast milk, you may need to bottle feed. While it isn't ideal, here again is one thing we have done differently. My daughter needed to be bottle fed because my wife couldn't produce enough milk. Don't feel a guilt here, and there probably won't be any longterm health issues. My daughter is as healthy as a horse. Your child needs you healthy, and it probably means somewhere you will need to make a decision that isn't currently in vogue. Those decisions, in my experience, shouldn't have any form of negative impact on your role as a parent. Don't let them interfere with your treatment. The healthier you are, the more attentive you can be as a parent.

 

[eleanorruby]

Jabo, all of your suggestions are very helpful, and it's interesting because many of the foods you mention are safe foods for me as well. I have never tried taking digestive enzymes, but it's certainly worth a shot.

shamrock15, thanks for your support and advice. I spoke to my GI doc, and he's actually going to contact my daughter's pediatrician to let her know that I have to stop breastfeeding due to my health and ask for recommendations for formula. I do feel guilty, although I know how silly that is. Clearly, a baby needs healthy parents to thrive. I am doing what is best for both of us; it'll just take some getting used to. Also, yes, my husband's been on nighttime duty since my daughter was only a few weeks old. We realized pretty early on that waking many times in the night was not going to be possible for me, and he's been amazing (and exhausted) throughout all of this. What I could use is a few extra hours of sleep in general; there are just not enough hours in the day.

 

[Malice67]

snip -- peanut butter ----QUOTE]

If at all possible, avoid peanut butter while breast feeding.... my daughter had HORRIBLE eczema the first year of her life -- cleared up as soon as she was weaned. We later found she was allergic to peanuts and that was what has caused it.... though if you do switch to formula as it sounds like you are thinking, it would no longer be an issue.

I know -- so many things to consider --- good luck!!!

 

[eleanorruby]

If at all possible, avoid peanut butter while breast feeding.... my daughter had HORRIBLE eczema the first year of her life -- cleared up as soon as she was weaned. We later found she was allergic to peanuts and that was what has caused it.... though if you do switch to formula as it sounds like you are thinking, it would no longer be an issue.

Thanks for the suggestion, but I've been breastfeeding for months and we haven't had any issues. Given that I eat a lot of nut butters in general, I'm pretty sure my daughter doesn't have any nut allergies. I will be switching to formula, too, though, so it won't matter soon either way.