3/16/2015

The Next Thing

Friday I wrote about the experience I have had with my health, how difficult the emotional weight has been. Today is a bit more technical, just letting people know what my doctor thinks is wrong and what we're doing about it. And, because it's me and I don't know any other way to live, telling you a bit of what is going on in my heart about it all.

It's a long story, but based on symptoms and other factors, both my naturopath and the gastroenterologist I saw believe I have something called SIBO (Small Intestine Bacterial Overgrowth). My most basic explanation for you is this: the good bacteria in the colon grow into the small intestine (hereon SI) and wreak havoc. They feast on not-yet-broken-down sugars and carbohydrates and continue to grow. They release gas and break down the mucus lining of the SI. This leads to intestinal permeability, or leaky gut, which triggers the immune system and a whole host of health problems.

For example, if you were feeling bored and wanted to list out just the symptoms I wrote about Friday and then compare them to these SIBO symptoms and these associated diseases, they're basically all there. A large problem is autoimmunity, and therein lies the preponderance of my illness.

Oh, and it's complex, but low-functioning thyroid is often connected to allowing the bacteria to overgrow and not be kept in check. My thyroid has likely been underperforming my entire life, but finally showed up in conventional medical testing (only testing TSH levels, which can allow hypothyroidism to go undetected until they get "bad" enough) when I was pregnant with Roger and suddenly my thyroid hormones tanked (which isn't uncommon in pregnancy). Additionally, SIBO is actually very common in gastric bypass patients like me, because such a large portion of my gut is bypassed that it's very common for foods to reach the end of the SI undigested, allowing the bacteria to feast on the carbs and grow.

In other words, I'm kind of a prime candidate because even if my body was keeping the bacteria in check, getting pregnant only 9 months after gastric bypass likely caused my tanked thyroid to fail my SI and the bacteria went nuts. Many of my problems and symptoms began around the middle of my pregnancy with Roger, and then skyrocketed when I got pregnant with Juliet 9 months after Roger was born. Since my pregnancy with her, and four months of just not sleeping (yes, she's worth it, but no, I did not think I'd survive) my body has just never been the same. But add up these factors and all of my symptoms and, even though my gastric bypass surgery prevents me from the test to definitively prove I have SIBO (long story short: it's a breath test that measures gases released from intestines and timed;  only the specific bacteria release certain gases, and the drink which the bacteria digest takes at least x-amount of time to reach the colon, where the bacteria should be. The problem is my shortened intestines would alter the times, because there would be no way to prove whether it is my SI or a quicker arrival at my colon, thus not definitive of whether I had the SIBO or not), this is what my doctors believe is going on and what led to the rest of my autoimmune problems.

So, the plan is to attack the SIBO in two ways. The first is to take an herbal antibiotic treatment to kill the bacteria. We chose this method for two reasons: one, my insurance won't pay for the conventional antibiotics since I can't take the breath test, and the herbal method costs less ($30 for two weeks instead of $1200 out of pocket--and yes, you read that right, we are paying 2.5% of what the conventional antibiotics would have cost), has fewer side effects and is safer, plus the herbal regimen actually was found to be significantly more effective. I found this study and my naturopath was really encouraged by it.

The second mode of attack is the Specific Carbohydrate Diet (SCD). This is used to treat intestinal disorders. What the diet consists of is...well, not a lot. It limits carbohydrates to monosaccharides, meaning no complex carbohydrates. Imagine paleo (so no grains, no dairy*, no soy, no sugar) plus I can have no complex carbohydrates (thus no starches at all, including potatoes / sweet potatoes, taro, etc), no nightshades (tomatoes, peppers, most spices) for quite awhile, no onions or garlic (THE HARDEST PART), no eggs for me at first, no meats processed at all beyond being ground, and zero emulsifiers or yeasts of any kind. Oh, and no chocolate or caffeine, and only very dry wine in moderation after the first 1-3 months, or whenever I'm feeling significantly better. Many fruits are allowed, but they have to be super ripe. I have to peel everything, deseed, and for a solid 1-3 months every veg has to be cooked / mashed.


If you are feeling super curious, here is the legal / illegal foods list on the website based off the book written by the woman who founded the diet. That said, the dairy* is that after the initial phase, in which I basically have chicken broth and, broiled meat (with only salt), and pureed carrots, I can slowly add the things on the linked list. If I don't have reactions I can eventually have aged (aka low lactose) cheese in moderation and am strongly encouraged to make my own special yogurt, plus it actually allows certain nuts and such and even some legumes, if properly prepared, are allowed later, around the six months mark. But point being, it's so strict for the first year or two that I can't risk even buying anything other than raw nuts that I dehydrate myself because most nut mixes have some sort of starch but don't list it on the ingredients. Yahoo.

How the SCD should help me is that the idea is for my body to break simple carbohydrates down in my stomach so that by the time they get to my SI there is nothing left for the bacteria to feed on. This is why the one-two punch is killing the bacteria with antibiotics and then starving them by providing no carbohydrates for them to feed on.

The results can be mixed. Some people feel better almost right away and within a few weeks just have a new lease on life. Others feel awful during die-off and take a few months to finally feel better. There's also the possibility of a lot of tweaking. Some people swear their healing took off after starting the yogurt, others swear they felt better when they cut it out. But for a lot of people with SIBO and/or autoimmune response from intestinal permeability, after a lot of trial and error to find what works for them, this sort of diet (there's also AIP [Autoimmune Paleo] and the FODMAP diet) brings healing and, though it's a pain especially in our convenience food culture, it literally changes their life.

So that's what is thought to likely be what's happening in my body and the plan for how to treat it. This is the next thing we're trying; we've have a few things that seemed like we'd found the problem and tried to treat me and it didn't work. While my doctors think this could be it, we've also thought that before. So again, this is simply the next thing. Maybe it's finally the thing, but for now it's the next thing.

I wanted to end with how I'm doing with it all. Practically, I'm nervous about how hard it is to eat that way for a long time. If you've ever cut sugar for even a few days, or done a Whole 30, you know how careful you have to be. I call this diet Paleo or Whole 30 on steroids. And then there's the fact that it's TONS of prep--making bone broth, all the preparing of the fruit, the fact that every thing I put in my mouth has had to be cooked or peeled or assembled by me. Since my symptoms are extreme fatigue and chronic exhaustion and pain, that makes me a bit nervous about how it will go. But those are things that I simply can only deal with in the moment, other than consistently asking Jesus to help me rest in him when I feel anxious about things I cannot control because they aren't even here yet.

The biggest stuff is deeper. I realized that part of me feels that same hope I've described before--maybe this is finally an answer, that magic key my naturo speaks of in other patients where they tried the antibiotics and suddenly every symptom just started falling down like dominoes. Maybe I'll heal and be able to live a simple, normal life. Maybe having two more kids starting next year isn't a pipe dream. Maybe cleaning up the piles of mail and paying bills for an hour won't feel like I just spent 12 hours in a dungeon.

But then there's the other part, the part that's afraid to hope. Afraid that I'll try so hard yet again and nothing. Time and energy and emotion and stress and money and my soul poured into something just so I can live that simple, normal life and more questions and no answers.

My heart currently looks like a twisting of those two--hope and afraid to hope--and a turntable of conversation with the Lord. It generally looks something like believing he's telling me to hope, to ask, to come boldly before the throne of grace and ask that this is it, that this will bring healing and I won't spend the rest of my life getting sicker and sicker like I have been. And then feeling that dreadful sense that it's bad to hope, that God's not a piñata. But then reminded again that it's beautiful to hope, beautiful to ask my father for this good thing while also asking that by his grace it doesn't become an Ultimate thing, wherein my joy in the Lord hinges solely upon getting healthy.

And, in and beyond all of the above, trusting that if I do, by grace, realize I'm treating the Lord like his job is to heal me and only then will I believe he loves me? Well, then I can repent, receive grace that Jesus has covered that sin, and I don't need to try to manage myself now in attempts of avoiding needing Christ later. Always desperate, my friends.

So, then, I want to share something incredibly vulnerable with you. I was feeling pretty sad a few weeks ago, because I was just so. dang. sick. And the thought of getting through the next ten minutes? HOW? So then, how could we even consider more kids? Especially since, both statistically plus my gut feeling, any future biological children are also quite likely to have autism and the same gamut of therapies and such that I have now, but just added to wherever we are with Roger and Juliet. Not to mention pregnancy and not sleeping and all of the normal difficulties of more kids for a generally healthy mom. I just felt like it wasn't possible and I needed to accept it. No more kids. Not even adoption. Maybe we're just meant to be a family of four.


My two favorite pics with my babes--just from this weekend!

My dream of having a baby with a '16 birthday (16 is the best. number. OF. ALL. TIME. and I LOVE numbers--happy 3.16, btw. Only 7 months until my birthday!) should just die.

The hashtag my friend Kerry started, #twomore because the existing Haggluniños are so dang amazing, should die.

My dream of having four biological kids, two boys and two girls, should die.

My dream of foster adopting a black sibling duo in 7-10 years should die.

My family dreams should just die.

I don't know what was self-centered despair and what was the Lord asking me to cling to him and not my own plan. I didn't feel angry with him, nor did I feel sweet release. I felt sad and and disappointed yet not abandoned.

So, then, fast forward to Wednesday. I was driving the kids home from Juliet's CUBS class, full of Roger's birthday joy, and just feeling thankful for our children and family. And suddenly I just felt very certain that the Lord's will for our family includes more children. That I'll be healthy enough to try for a baby to be born late next summer-ish. Or at least surprised pregnancied (yeah, I make up words), because we are two for two in the "what are the chances?" game.

And then yesterday. I was at church, seeing the many moms bouncing infants around the room (in their seats, standing in the back and to the sides of the sanctuary). I went to the bathroom and saw a group of dads in the common area, with the one-ish year olds underfoot, listening to the sermon and chatting out there. I thought about my many friends with babies in the room for nursing moms, listening to the sermon and chatting. I just thought, clear as day, "That's going to be me again. I'll be pregnant and then in with the other nursing mamas. More biological babies are in our future."

I have no certainty that it's true. And I wasn't thinking about the diet or healing and being able to have kids. But it didn't feel like me just deciding I'll make it happen. It felt like a promise.

So we'll see. The beauty of sharing it here is that if it happens, what a sweet joy to celebrate in together. And if not, I can share what has happened and how the Lord is with me right there, right where I'll be on that future day. There is no losing. The loss would be in being all scared and saying nothing, as though the Lord only gets to be talked about when we're certain, like when I'm holding babies numbers three and four (feel free to join my prayers for boy/girl twins), and only then say, "Well I actually had this thought once and since I'm right I'm safe to say it."

Nah. I don't roll that way. I'll likely still battle feeling foolish if I end up being wrong about what I thought the Lord was saying, but I was no less foolish if it was just in my head. I just feel less foolish if I didn't tell you. And even then, only sorta, because if I feel foolish inside I assume it's just all oozing out of me anyway. Why keep it in?

And, for me--which is to say it's not law or "best" or for everyone's personalities--I'm always most comfortable in my own skin just sharing things like this. Because I get such great joy in that piece later where we talk about where I was and where I am, and you think, "Oh, yeah, I remember that."

So. We'll see where we are someday. Today, I start the kill-SIBO regimen. Yesterday, today, and forever the Lord is good and trustworthy and man alive, he LOVES me! So I can rest in that.

While working realllllllly hard to convince myself that I actually *can* survive without chocolate. Because, just honestly, I know God sustains all things, but in a woman without chocolate even he probably wonders sometimes if he's gonna make it. ;)


No comments:

Post a Comment