Naturally Gutsy

Surviving SIBO, IBS-C, Celiac Disease, Motility Disorder, & Pelvic Floor Dysfunction …. with a smile.

GI And SCD Update

It has been a long time since I’ve written on Naturally Gutsy, yet I get a lot of visitors daily asking the same questions I’ve asked over the years while trying to manage my gastrointestinal (GI) disorders. So I know you’re out there. The two main search queries I get are from folks curious about whether SCD (the Specific Carbohydrate Diet) really works and is worth the effort and those who want to know more about biofeedback to treat pelvic floor dysfunction and constipation. I can only offer you my personal experience; don’t take it as medical advice.

Specific Carbohydrate Diet

I’m still STRICTLY adhering to SCD. Depending on my gut’s stability, I’m able to eat between 30 and (at best) 40 SCD-legal foods. There are lots of people in other countries who survive on 10 or less foods because they don’t have the luxury we do of getting food from all over the world. I’m ALWAYS grateful that I can now eat solid foods and I’m happy with my 30 foods because I’ve learned to make all kinds of things with some culinary creativity! My food is flavorful and others often enjoy it too. Using herbs and spices has kept me from cheating because I can taste wonderful varieties. Our tastebuds become more joyfully sensitive after we’ve followed SCD for a while. I can now taste preservatives and all those things that don’t belong in my food – and they taste icky! Don’t know how I ate that stuff before.

I’ve been on the diet since November 20, 2011 – almost three years. I never thought I’d be able to say that! I’m not often tempted to cheat because when I have cheated (about once every 6 months), I pay for it severely and all my previous gut symptoms return, even with one cheat meal or snack. It an take weeks to recover. I know by the third year many on SCD seem to have few symptoms and some can even slowly resume a more “typical” diet. I’m not one of those people. I can now accept that this may be a lifelong lifestyle for me and I’m not usually sad or frustrated by that.

http://www.SCDLifestyle.com has been instrumental in my progress. Without Steve and Jordan I just don’t think I could have done this diet! If you need support or ideas, check them out! You won’t regret it. Their plan helped me walk, step-by-step, through starting and growing on SCD. They added to what Elaine Gottschall began and made it practical to daily, contemporary life.

I’ve learned in the last year that I have Dysautonomia, or Autonomic Dysfunction of my autonomic nervous system which controls all those things you usually don’t think about – breathing, temperature regulation, sweating, blood pressure and even the movements of our GI tracts. Mine’s seriously screwed up. I believe this has lead, in large part, to my constant SIBO (Small Infection / Bowel Bacterial Overgrowth) infection because slowed motility will do that. I can’t change that my brain mixes signals, even with the strictest diet. I believe that as my motility has slowed as my other conditions have worsened, and this makes knocking out methane-predominant SIBO nearly impossible.

I do still take laxatives. I’ve tried every one on the market including prescription laxatives. While I’ve felt magnesium citrate has been the most effective and gentlest on my particular GI tract, I’ve learned that it also irritates my bladder, so I’ve recently stopped taking it and I’m searching again for a laxative solution. I’m on a high salt diet to treat my Dysautonomia, and lots of salt can pull water into the intestines so I’m experimenting with salt capsules I compound myself (to make them SCD legal) to see if I can not only increase my BP with salt and water loading, but also get a laxative effect. So far it has helped, but I still need more assistance, so I’m considering going back to Miralax and/or trying Linzess. When I keep my laxative regimen in check daily, the bloating is much more manageable and I can fit my size 6 pants again (instead of wearing maternity pants because my poor belly was so distended).

How does my gut feel? Pretty good when I’m strict on SCD AND I’m taking a laxative that works for me. It’s not perfect, but it’s lightyears better than it was several years ago and I’m satisfied with my progress, especially considering the challenges presented by Dysautonomia. I don’t use antibiotics. I still prefer to do a colonoscopy prep in order to clean out the bacteria in my gut if the SIBO flares badly, though those flares are much less common now unless I let the constipation get a hold of me because of decreasing my laxative use. Some days I get nausea still and I don’t know what triggers that. Most days my Bristol scores are between 3 and 5. My gut is no longer the center of my world and I’ve moved on with that part of my life because the diet has been as effective as it can be for me (hence my silence on this blog).

Of late (the last three weeks) I’ve had trouble because I tried a stimulant laxative due to the necessary discontinuation of the magnesium citrate (which had been working wonderfully). All stimulants, from Dulcolax to senna tea and castor oil give me level 9+ pain intestine cramps. So all stimulants are OUT for me. I’m going to try Linzess soon, and I’ll let you know how that goes. I’m also increasing my fat and water intake.

Biofeedback for Constipation / Pelvic Floor Dysfunction

I still don’t have the sensation that I need to have a bowel movement like most people do because I have rectal dyssynergia. Instead, I get pain and then I know I need to use the bathroom. It’s not as bad as it used to be, however, and I don’t feel anxious about going to the bathroom. I also don’t throw up when I have a bowel movement. Biofeedback doesn’t promise that our sensation will change. It teaches us how to go more effectively and retrain our muscles.

If you want the nitty-gritty details on my experience with biofeedback and what you can anticipate if you are going to do it, check out this post.

My ability to have a successful and less painful BM is better now than it ever has been despite the fact that I haven’t had more than a few checkups since sometime early- or mid 2012. I do have pelvic floor problems if I let my Bristol scores get out of hand by not drinking enough water, not taking laxatives, not moving around, eating lots of fiber and not enough fats, etc. These problems are resolved once the triggers are addressed.

I’m not afraid to use public restrooms and I do so successfully without enemas. Every once in a blue moon I have trouble fully evacuating. I carry a baggie with two nitrile gloves, some lube and wipes in case of emergencies. Manual evacuation is NO FUN! But it’s a whole lot better than suffering for hours. Stress can trigger pelvic floor issues; doctor appointments in particular. I have learned not to leave home without my little survival kit. It’s even more unpleasant to try to manually evacuate without gloves, lube and wipes. Better safe than sorry!
To Sum It Up…

My gut isn’t perfect and I’m still symptomatic. But I’m happy and satisfied with my progress because I never thought it could even be managed this well when I was in the thick of it a few years ago. Following SCD is a lifestyle for me now. I’m content. I still continue to work out the kinks when they come, and they will come, and I often remember where I was which makes me grateful for where I now am. I still flare and need anti-nausea drugs or Levsin to control spasms, but that’s typically because I’ve had to change a part of my routine due to other health complications. I am still tweaking my diet.

Considering SCD? I say GO FOR IT! Has biofeedback been recommended? Try it! Really, if you’re already suffering, what do you have to lose?

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Gutsy Girl’s SCD Cauliflower Pizza Crust

Gutsy Girl’s SCD Cauli Pizza Crust

1/2 head cauliflower, finely grated
3/4 cup shredded cheddar cheese
1/3 cup fresh Italian herbs, if available (basil, parsley, oregano); or use dried herbs in smaller quantities
1 egg
1 tsp minced garlic (more is allowed if not kissing anyone soon)
salt and pepper (to taste)
your favorite toppings

Don’t wash the cauliflower. God made dirt, dirt don’t hurt, and if any germs can survive that hot oven and kill me, I say “let’s have it on”. Managing the amount of moisture in the mixture is key. Finely grate cauliflower in food processor, salad shooter (my fav) or by hand. Preheat oven to 425.

Mix cauli, 1/2 cup shredded cheddar (reserve remainder for topping), herbs, egg, garlic together. I like to get my hands in it and pretend I’m an Italian chef – it just seems more “authentic”. Add your salt and pepper and mix until uniform.

Line a pan or cookie sheet with parchment paper and don’t skip this step – you’ll thank me later. If you can’t find parchment paper, well-oiled aluminum foil is your next best option. Naked pan is a lesson in patience!

Now go for it – press it all into whatever shape you desire (heart perhaps?) in your pan. Bake at 425 for 15 minutes, then at 450 for another 10 minutes. Your baking times may be longer or shorter. You want it to get fairly dry so it won’t be soggy.

Add your toppings and the remaining cheddar and throw it under the broiler for just a few minutes. WATCH CLOSELY because it will burn easily. This gets the cheese nice and bubbly/crispy and also holds the pizza together better.

If you find the crust falling apart, try adding another 1/2 to 1 egg next time. You can also add more cheddar. Both help it stick together. I do suggest, however, eating this pizza with a fork and not expecting it to hold together quite like dough pizza.

There are lots of cauli pizza crust recipes on the net that require cooking or steaming the cauli first and draining it and then sticking it in the fridge to cool before baking. I’ve tried that before and I’m too tired to mess with all that! I’ve found that the results of this simpler recipe I’ve made come very close to the results of other more intensive recipes, so I’m satisfied with taking a few shortcuts this time around.

SCD NOTE: I think for some folks on SCD this is going to be a more advanced recipe. Make sure you can handle cooked cauliflower (think Beano!) and cheese (think casein) before trying this one. Tomato is a nightshade. If you’re ready, have fun!!

Here are some pictures (I’m definitely NOT a photographer):

After pressing the mix into the pan. Note lack of parchment paper - lesson learned!

After pressing the mix into the pan. Note lack of parchment paper – lesson learned!

Pizza crust is done!

Pizza crust is done!

Let's get SAUCY!

Let’s get SAUCY!

Added cheese and bacon. This is after the broiler did it's magic.

Added cheese and bacon. This is after the broiler did it’s magic.

Mmmm! It passes my taste test. :)

Mmmm! It passes my taste test. :)

Let me know what you think!

Gutsy Girl

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Observation Keeps Life Interesting

I often have long drives to and from doctor’s appointments each week.  These drives can take 3 hours a day, so I tend to pass quite a bit of scenery along the way.  For example, just last week while driving I saw a wild turkey crossing the road (I wanted it for dinner – that was one HUMONGO bird!).  I also timed the flight of a sparrow by matching its speed with my car and reading the speedometer – 35 mph!  I had already clocked a buzzard months ago at 45-48 mph.  I also saw a poop truck, oh excuse me, I meant “Sanitation Truck” with this sign:

This Truck May Be Transporting Political Promises

This Truck May Be Transporting Political Promises

I don’t really care what your party affiliation is – this applies to all political parties IMO.

Gratefully, what I have NOT yet seen is this truck:

We haul milk on weekends.

We haul milk on the weekends.

In any case, there’s usually something that makes me smile or laugh or think about something other than my problems as I drive back and forth.  I’ve seen a family of peacocks – real peacocks! like the ones in the zoo that chased my (screaming) mother because she was wearing a big blue and purple broom skirt – who normally hang out at one particular intersection from 7:45-8:10am in the summer.

I enjoy crossing the lake on the bridge and looking at the water and the boats.  During the fall, when the leaves hit their colorful peak, my mouth is hung open for most of the way there and back; the colors are amazingly beautiful.

There’s an old man who lives in an old house next to a BP gas station.  A friend of mine knows him.  The man doesn’t work at the BP, he doesn’t have a car.  I don’t know what he does all day, but 3 out of 4 times I find this old man sitting on the front porch of his rickety house in one of the 3 recliner chairs that persistently rest in the rain and elements.  Heat and cold seem to leave him unaffected.  I wonder what he does all day at home and if he’s just bored.  I wave when I see him.

There are several farms I pass along the way, and being a horse lover, I’ve actually learned some of the horses’ personalities.  My favorite horse is hilarious!  He’s gray and white and he loves to roll on his back.  When he eats grass, he sort of nuzzles it before he pulls it.  He gets picked on by the full-brown horse but somehow prevails.  One of the more aggressive brown horses eventually had a blinder put on his head; it wrapped around his face to cover both his eyes.  This functionally blind horse still found that food bucket, though!  Guess my happy gray and white horse won after all!

There’s a cute little shack along the way decked out in coke signs with an antique gas pump and so forth.  I have no idea if it’s a store or just someone’s little shed.  It is cute though, and when I see it I know I’m not too far from the hospital.  It seems like the owner of the shack keeps adding new road signs every few months; it wasn’t as cluttered when I first began driving to and from the hospital in 2011, but I still enjoy it’s antique and friendly touch.

When I leave the hospital to go home, I have to pay my ticket at the teller windows while exiting the parking deck.  Guess I’m a regular, cause almost all of the tellers know my name and face.  They greet me and I ask them how they’re doing and I always request a receipt.  Though now they usually print my receipt before I even ask, like a greasy-spoon waitress who knows her regular’s order by heart.  “Haven’t seen you for a while,” the Asian woman told me last week as she slid my ticket into her computer slot.  “That’s a good thing I think!” I said with a chuckle.  I told her I’d be coming more often for a few months, so not to worry.  :)  It surprises me that for as many people and tickets as they process each day – surely hundreds if not more than 1,000 – they still all know me.  I’ve noticed for some reason I’m hard to forget (which means I can’t get away with ANYTHING naughty!).  :/

All these things make the drive to and from more interesting.  I often listen to the radio in my car if I’m in the mood.  Usually a Christian AM station with Bible teaching.  Occasionally I’ll surf the waves for something interesting and new, some new style of music or whatnot.

I take the back roads because they’re often shorter (unless I get stuck behind a bunch of “political promises” and red tape…or old people in OLDsmobiles who’ve forgotten the “MOBILE” part of the equation…) and I just enjoy the scenery on these roads more than the view of the lovely highway blacktop and other annoying drivers.

Happy observing.  :)

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The next step in healing – getting a life

I had an interesting and ultimately encouraging conversation with a friend today. I said, for perhaps the 20th time “I just feel like I have no life. I am at home often, managing health issues from sun up to sun down, and I feel like that basically sums up my life. At times I don’t even know how to talk to people anymore if it isn’t about health stuff, and I hate it. I don’t want to be like that.”

My friend Rachel, who knows more about my health and life issues than possibly anyone else, began a very helpful monologue. I needed a “talking to.” She explained that I do actually have a life and a ministry, even though its not what *I* had planned for myself.

“I love talking to you because you tell such great stories about how you see God working in your life and how you have been involved with reaching out to other people. Your stories are often funny too. Don’t downplay what you have been able to do! Its a lie to say you don’t have a life, and its a way Satan can try to discourage you. You bring Mike to church every week, you teach him life skills he hasn’t learned, you take Mary and Mike to the grocery store, you sit and talk to Charles, you send long email responses back to people who email you from all across the globe who have contacted you looking for support regarding gutsy problems…and you do it all even though you are more often than not in significant pain. You are at a point now where you are trying to find a balance with all these things in life, knowing that you can’t talk about it or think about it ALL the time, and that’s a good place to be – that’s where you are growing. A lot of people really care about you and you miss some significant things God has done and is doing in your life and those around you when you disregard and fail to talk about these other parts of your life. They aren’t insignificant. You have been on SCD and fighting to win the war with your guts for over a year and a half (longer if you count pre-SCD battles) and despite all the energy, pain, and hard work you’ve put into that, you still always have taken time for other people. Before you knew Mike, you were friends with JR and that took a LOT of energy. And that was while you were very sick too. You spend time with people even when you know its going to cost you – it may cost you rest, you may be hurting so much you are trying to make it through a conversation and pay attention or wondering if you can continue the conversation without excusing yourself. But you do it. There is a lot of fight left in you, and in some ways I think its even stronger now than its ever been.”

I needed the correction and the pep talk. Rachel encouraged me to talk about these aspects of my “real life” more with friends and online. I had come up against a writers block for my http://www.NaturallyGutsy.com blog, and Rachel encouraged me to write more about how life moves on even when you have a super long list of hard diagnoses, how I still stay active in spite of the challenges.

As she talked, I realized that this very thing is the next step in my healing. Its been a consuming year and a half dealing with tough health issues. No, its been a consuming 10 years dealing with tough health issues!!! Who am I kidding?  Lol. Though I have another whole ball of wax to bounce around with my new diagnosis of CRPS, and that too feels utterly consuming, I know it may become less consuming in time as I learn to fight and manage it more appropriately.

In fact, when I started SCD a year and a half ago, I didn’t really think I would get to the place I’m at now. I mean, God and http://www.SCDLifestyle.com have brought me gut freedom I’ve never had before, I’ve learned to really cook great meals now, and I am healthier in mind and body generally than I’ve ever been. SCD isn’t so stressful to me now. I know my allowed foods by heart, and I also have a solid base for my super safe foods which I can fall back on when the gut gets wonky. So while its still a significant amount of work on my part with frequent marathon cooking days and planning ahead, SCD is freeing rather than stressful to me. I don’t hate my kitchen nearly as much. My attitudes towards and about food are much more positive and most of the time I look forward to eating. Couldn’t have said that a year ago! Gut pain is mostly controlled.

Before my CRPS flare, I was doing well at getting out more, being more active, and doing lots of thing I had not done in AGES (roller skating while using my rolling walker, for example!). My setbacks now are more often CRPS related than gut related. And if it wasn’t for the CRPS, I would still be doing more nowadays.

I do have a mountain to climb with the CRPS diagnosis. I need to tackle it just like I’ve tackled taking charge of my gut. So in its way it will be more work than gain for a good while, just as my gut was. But eventually I might get back to that happy place where I’m able to do more in the future. One never knows.

But in either case, I think Rachel is right – one of the main goals to achieving health while still responsibly managing these diseases is to be grateful to God for what I do have in life by properly recognizing its significance. This next step in my healing is more mental, spiritual, than it is physical. And yet its these mental and spiritual changes which I believe can have the greatest impact on our physical wellbeing (think of the connection between stress and physical illness!). I do believe its possible for us as gutsy people to continue to live healthy lifestyles with our minds, bodies, and relationships as we put forth the extra effort it takes to achieve what is most important to us. The fact that we do try itself is a testimony to others of the human spirit and God’s life-giving power.

For me, I choose to put significant energy into relationships and taking time to be there for people. I’m also looking into some new ways to use my creative talents to drive my disability-adjusted career goals.

When life throws a curve ball, we adapt. We move on, doing what we must to take responsibility for those things which are naturally ours to manage. We keep choosing what is important, what we will fight for, and we commit to it, grabbing the bull by the horns and pushing forward come rain, snow, sleet, hail, or falling pianos. When another curve ball comes, we repeat the process by adapting again. That’s life.

I would love to know how you think about your new and different life post-diagnosis or post-SCD. Are you tempted to feel like you don’t have a life? What are you using as your definition of “having a life”? What meaningful activities can you engage in or recognize you are already doing so that you can more healthfully appreciate your life?

Gutsy Girl

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