Saturday, October 08, 2005

Theory #...shit I don't even know what # I'm on anymore

Today's weather was rainy and dreary, very much like my mood after changing J's diaper this morning. Yup, you guessed it, more blood. And this time is was the most blood since his initial bloody stool. Here is a picture of it if you are really curiuos (and it's only visible to those marked as family/friends. If you aren't and want to be let me know). I'm not collecting pictures of his diaper contents for fun, it's part of my latest, but necessary, obsession with documenting my eating patterns along with his stool and reactions.

So my oversupply theory went out the window. I am still doing the block feeding but with no improvment and the typical self-doubt that sets in I'm on to other possibilities. This has been quite emotionally draining for many reasons. 1. Because I'm very worried about J 2. I'm giving up so many pleasures (yes eating gives me great pleasure) but it's for a good cause. 3. Not much support from the medical field or people in my life. Well they all give me their sympathy but usually followed with a "you can't live like this." There isn't anyone I can relate to, nobody who has shared this experience. Except for one lady I met on the iVillage forum. She saw one of my posts and got in touch with me because she went through the exact same thing with her son who is now 15 months old, healthy and still nursing beautifully. After many trials and support from her Pediatric GI specialist, it was determined the cause was Allergic Collitis (most often a delayed reaction - non-IgE mediated - food intolerance. Therefore it can take up to a week for symptoms to appear once a new food has been introduced. And we had J tested for these food allergies but RAST and skin testing both test for IgA allergens. There is no test for non IgE mediated allergens - only elimination and trials)

I'm following her advice right now since this is what the GI had her doing, I figured I'd try it for a few weeks before going to a GI myself. I'm keeping a food diary still, a diaper log and any notes on his behavior. And starting this past Tuesday my diet is more restricted than ever. No dairy/soy/eggs/fish/corn/wheat/peanut/tree nut/red meat/citrus/anything acidic. The logic is to let the gut heal since it's so inflamed now and get to 3 weeks of healthy breastfed stools. When my dogs had intestional problems the Vet had me feeding them boiled chicken and rice until their stool returned to normal so this seems logical to apply to J as well.

So what am I eating you ask? Not much that's for sure:

Free-range, hormone-free, antibiotic-free, all natural turkey, chicken or pork
Rice or potatoes (boiled or baked)
Vegetables, mainly squash and zuchinni
Only condiments are S&P and Olive Oil

Hot creamy rice cereal with pure organic Cane sugar and calcium-fortified Rice Milk
1/2 of an organic fruit, mainly pears

Leftovers from night before dinner and the other 1/2 of my fruit.


Yes that is IT. No variations, that is all.

The problem though is despite the evergrowing list of restrictions, he had more blood today than ever. AND he was pretty darn fussy today which he hasn't been in a long time as well as fussy/gassy througout the night. The only constant thing in my diet since this all began is rice. I think it's time for the rice to go. Usually rice is one of the safest things but the lady I've been corresponding with had to eliminate rice as well. (Although I think most doctors would deny rice could cause a problem.) And looking over my notes I had a LOT of rice yesterday plus the addition of the Rice Cereal this week instead of oatmeal. Normally I'd eat potatoes with the only rice being the milk at breakfast. But yesterday, looking for a little variety I got risky and changed it up. I had more rice than a person should eat, plus the rice cereal, plus rice milk, plus oatmeal and plus this stuff called Cafix which is fake, 100% caffeine-free coffee made with chickory, barley and beet root. (Quite tastey.) Since today was so bad for J and there has been zero improvment since the start, I figured the rice could be playing a part. But as my new friend pointed out there is gluten in oats and barley so I may need to be gluten-free as well. And after reading up on the Rice Milk, it is NOT gluten-free even though there is no indication on the ingredient label! As if this wasn't hard enough.

Now I know J is not allergic to all of this, the point is to get him back to normal before challenging in new foods. If we don't let his belly heal then it will be impossible to figure out the problem. I am hopeful (read: trying to desperately grasp on to any little glimmer of hope, any slight possibility we will get this figured out) that eliminating rice could help. I thought back to his very first bad poop and it was right when I went to my Grandmas who stocked me up with her kick-ass rice pudding that I couldn't eat fast enough, or get enough of and ate several days in a row. I thought it was all the dairy with it, which I am sure is a large part of it, but hell, maybe the rice played a roll too. I'm reaching here. I hate when I get all excited thinking "yeah, it has to be the rice b/c I was eating all that rice-pudding, etc" because I've had this excitement before. Thinking I was on to something only to get nowhere. I guess I can't say nowhere because since I initially removed dairy/soy, his fussiness decreased by 99%. That itself is worth it and tells me it helped a little with his comfort. I just need it all to go away and get him, including his poop, back to the perfect specimen he is.

I know some people out there may see this as selfish and think "give him the fucking formula already to see if it helps!" but trust me, I would not be doing this if I did not think it was in his best interest (plus he won't even take a bottle now so we wouldn't be able to FEED him the formula but that's a whole other discussion). I toss and turn daily with the thought that I could be doing him more harm than good. But every day I come to the same realization (with the support of my husband and some good friends) that despite all of these problems, breast is still best. I will live off of water and vitamins if I have to (by the way, did you know a lot of vitamins contain wheat? and dairy??) Fortunatly I don't have to be that extreme and as you can see eating poultry, vegetables and fruit is actually damn healthy! Damn boring, but damn healthy!

Even though I feel I am doing this for J's best interest and I wouldn't have it any other way, I am becoming totally depressed. The weekends are the hardest. Eating is such an intregal part of our fun. Going out for dinner with friends, going out for coffee and dessert, going out for a big, gluttoneous breakfast, eating ice cream while watching a movie, that's what we did for fun. We weren't into clubs and bars...we were into eating. And now we do not eat out. At all. Too many unknown and hidden ingredients and cross contamination. Wont even eat at someones house because chances are they aren't going to want the blandest meal in the world. Plus people don't realize how extreme it is. You say corn-free they think no corn on the cob. corn starch, no corn syrup (good bye hot tamles and sorbet) get the point. And wheat, my Lord is everywhere. I thought eliminating dairy was bad! So I feel like my weekends are no longer fun, they are more a form of torture. We can't even go out for extended periods of time because we have to be home to eat. No eating on the go. When I go out during the week I bring a lunch with me incase I end up at a friends house.

Ugghh, enough being depressed. Some days I'm more optimistic about this all, today just isn't one of them. Yes this is temporary, yes it will get better, yes I will be able to eat this food again. But for now, this just plain sucks.


Blogger jess said...

Wow, you're telling my story. When my, now 4 year old, daughter was baby i went through the blood in the stool, restriction diet, all of it. I can tell you the rest of the story and, perhaps, some advice if you want.

Take care, i know your pain.

10:42 PM  
Blogger Kira said...

i have a friend who is doing your ultra restrictive diet, who lives in baltimore. her newborn (4 weeks) is colicy and she is nursing, and her 3 year old has bad bad food allergies she may never outgrow. she has done a short formula trial while pumping at the same time, just for a few days. you really might get a lot out of emailing her. let me know if you are interested in getting in touch with her. her name is Jen and she is going crazy with all this stuff too.
I wish you luck. And your son is very lucky to have such a caring mother.

10:51 PM  
Blogger The Mom said...

You know, I was actually wondering today what was going on w/ J's bloody stools since you hadn't mentioned it in a while. I thought maybe it had gotten better. I was with you on the oversupply theory, especially after seeing that photo of your shirt! I just feel awful hearing what you're going through. I can't even imagine. You have every right to be depressed! If you ask me though (which you didn't but I'll tell you anyway), I think you're doing a good thing. Breast really is best, and you're definitely making every sacrifice to make it work. If you end up going to formula, you can't say you didn't give it your all. I know how you feel wanting the breastfeeding to work out, and I hope it does. I'll keep my fingers crossed that this all gets sorted out. If it's not too freakish a request, can I see the bloody stool photo? I don't think I've ever seen blood in stool and now I'm curious as to what it looks like. Good luck to you guys!

10:57 PM  
Blogger holli said...

Gosh - I'm really, really sorry - because you are not only having to obsessively monitor your own food intake, but be diligent about what is going on with him. I really REALLY hope they come up with a solution soon.. to say THE LEAST!!!

At least you are giving it your all. Seriously - that is so caring.. most people would have caved to the formula by now.

I know Faith has had some bloody stools, but it's because she will choose to eat nothing but cheese all day.

I'm really thinking about you - I can't wait for a good post about this.

11:00 PM  
Blogger Pip and Tom said...

I'm so sorry you're going through all of this.

11:02 PM  
Blogger Rachael said...

You need to print these posts for when J because an asshole teenager who says he hates you. then show them to him and say "See, I loved you enough to give up food all together".
Girl I have no idea how you are still doing this. But I am rooting for you. I thought I loved Gavi but if I had to give up anything I think I would have taken the selfish way out and just given up.
I am freaking proud of you and you should be too. I hope something works out soon and you can start reintroducing to see what is wrong with his little tummy.
Best of luck hun!

11:20 PM  
Blogger Mrs. Flinger said...

My god, I wouldn't even know what to say except that stick with your intuition and don't give up bfeeding if you feel it's best. You are the mommy and are totally looking out for J and everyone knows it. I hope everything gets figured out soon and he can go back to normal, and can you. Food allergies are so scary. I'll be thinking of y'all.

12:46 AM  
Blogger mamaloo said...

I'm sorry to hear that you and J have to go through this. You are doing a great job exploring your options and monitoring your intake. It will pay off in the end. Even if it's something completely different, you aren't doing anything that a doctor isn't going to tell you to do.

And, tht formula? Rest assured you have to take out a damned bank loan to be able to afford that stuff. The formula you would need is a specialty thing. I've known women who've had to get doctors notes to get it covered by a drug plan.

But, your instincts a good. BFing is best, especially in this situation. While there may be something getting into your milk that may be irritating Js bowel, you're also giving him loads of nutritious stuff that may be getting lost due to the bowel irritiation, as well as anitbiotics to fight off any infections lingering to take advantage. Formula can't give J that.

8:31 AM  
Blogger Little Miss said...

Any time I ate dairy, my daughter would have bloody stools. If I gave in for just a couple bites of ice cream, the next feeding she would be pulling her legs into her chest, gassy, crying, and then poop blood. Luckily for us, as long as I stayed away from dairy, she did alright.

After reading your post, I wonder if changing your diet so much isn't having an effect on him. I know you want to be drastic and just make him stop hurting, but something like this takes time to figure out. (I know it's unsolicited advice, but it's what popped into my head.)

10:22 AM  
Anonymous Carol said...

Hi Cara,
I'm sorry to hear that you are feeling so down and discouraged about things. I can only imagine how hard it must be to have to eat the way you are. But as you know, I think it's the right thing to do. And even if you have to do it for a while, it's still only temporary. I would definately take J in to see a Pediatric G.I.

As mamaloo mentioned, your breastmilk is more than just food for J and formula can't begin to give him those things.

Hang in there. You're doing the right thing and I will remain optimistic for you. Just think ~ You are eating so healthy now! J's certainly getting all the great vitamins & minerals that he needs from you. Plus, it's obviously good for you to be eating so well.

I'm going to sign into my Flickr account to see the pics of J's poo. If I'm not on your Friends list, would you please add me? And thanks for the sweet mention on your blog today too :)

10:50 AM  
Blogger RSM said...

This all seriously sucks. I totally get what you mean about the eating being a big part of your entertainment and to have that taken away must be really hard. I must give you mad props though for hanging in there so long with this. Don't listen to people to tell you to get over it and formula feed. You're doing what you believe is best for your child, and you're continuing to try even though it's hard as shit right now. There's not a normal person out there that could call you a bad mother.

So, here's to hoping that this problem clears up quickly and that you're back to eating all kinds of yummy foods again really soon. I guess the plus side is that you're probably ripping the weight off from being so restrictive. But ehhh, still no fun.

And if you want, I have an empty spot on my couch. You can come hang out here and we'll be depressed and gloomy together!! Now THAT is fun! ;)

11:10 AM  
Blogger Kiki said...

I also am sorry that you have to go through all this. Not only changing your diet but all the worrying about J too.

Breastfeeding is best and you are doing an awesome job! You are the perfect mother for J.

God bless.

3:35 PM  
Blogger Courtney said...

I hope everything
turns out alright.


7:42 PM  
Blogger AFGUY said...

wow...the leftovers sound great! I am in iraq, and i got your name from HOlli's blog! Stay safe and hey your weather is better than 101 degrees at 4am in the morning

9:17 PM  
Anonymous Carol said...

afguy ~ I just tried to leave a comment on your blog but couldn't because you don't accept anonymous comments nor would Blogger accept my username of Chaotic Harmony.

You should change your settings so that people who choose not to use Blogger can comment on your blog :)

11:51 PM  
Blogger Nerd Girl said...

Mama --

Maybe his little gut would be soothed if you took some Lactinex granules? We've given them to Lovegirl in her bottle and they worked wonders. You get them from the pharmacy but they're not prescription. Of course, they are derived from cows-milk. But - Lovegirl was breastfed for 10 months and is now on soymilk (no cows milk ever) and they help, not hurt her.

Good luck! If only the little darlings came with instruction books . . .

8:35 AM  
Blogger Brandi said...

Man that really sucks! I can tell you one thing for damn are a better women then I will ever be. If the same was happening to me J would have a bottle of formula in her mouth quicker then you could imagine, ummm and I would have a brownie in mine :)
Really sweetie. I am so proud of all your going through and in the end I am sure you will be so glad you did! Good luck!

9:31 AM  
Blogger Melinda said...

You have to be wasting away to nothing!! eating is such a huge part of entertainment, it has to be hard...SO hard to turn yummy stuff away! And you know what there is another way to look at the not giving him formula..I know people who did the formula had problem after problem finding the right brand, soy or not soy, etc.. It went on for months and Months, so formula is no gurentee of an end to the problem. I really hope you guys find the problem soon!

10:02 AM  
Blogger KELLI BELLY said...

That really sucks! I'm thinking of you and pray that it will all be resolved soon!

12:21 PM  

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