A ton has happened since my last blog.
I started studying Homeopathy.
One daughter had a colonoscopy and upper GI scope that came back negative of all things.
Another daughter had a colonoscopy and upper GI scope that came back Crohn's.
Those 3 things have had me in a tizzy, to say the least. The homeopathy piece is bigger than I can explain in a paragraph. How I got there... my last blog post is a HUGE reason. Determining that there MUST be another way has forced me to read and read and read. Having a disease that I don't want to use traditional medicine unless I have to has forced me to listen to podcast after podcast. Being a 6 on the enneagram has caused panic inside of me.....because of all the "worst-case scenario" moments I can come up with.
But what is one to do when the people you love MUST make their own health decision and lifestyle choices?
The daughter whos scopes came back negative needs only to manage stress and food. ( and maybe a little homeopathy sprinkled here and there :-) There is no disease to manage. The other daughter has a disease to manage. She lives in a dorm with no kitchen and works insane hours at an amusement park. Living my food life (paleo) would take heavy commitment and grit. And a lot more homeopathy.
After her colonscopy, she and I sat with the same doctor I have. He gave her the same speech he gave me. Remicade....Humira......Remicade.....Humira BLAH BLAH BLAH. At least that's what I heard in my head. But I really had to come to terms with "This is HER disease and HER choice". She has to make the choice and she has to live with that choice. Be it a food choice and alternative medicine or a traditional medicine choice.
Ever since I met this doctor I have said he is a great doctor for "sick people" or "disease crisis". She is sick. Her disease is active and it needs to be actively managed.
My last post I talked about "who is in charge". My thoughts on that have not changed, but have definitely been challenged. As my "baby" (who stands a little taller than me), walks this newly diagnosed world she has to find her voice. She has to be in charge of her health. At 22 that is hard. It is hard to read up and study on your disease. It is hard to make food choices to live and not be sick. It is really really hard (even at 40) to choose alternative medicines. It is hard to be sick and not have the energy to do any of this.
I told her right after she was diagnosed that maybe this is her "Lot in life" or her "thorn in the flesh" you can let it point to Jesus.
My Crohn's has given me compassion that I truly lack. It has given me eyes to see a world full of invisible diseases. It has kept me in prayer. Sometimes through pain, but sometimes through peace. My heart looks different because of my Crohn's. My sickness does not define me, it gives me a lens to see through. Finding ways to be thankful......Is the only way.
The journey in our home right now is crazy. My learning about medicine that many think is a bit out there. A daughter who has stomach stuff going on without disease. A daughter who has stomach stuff going on with disease.
Where does it all land us?
Moving forward. Sometimes that movement is a crawl and sometimes it is a run. But however, you or we move forward.....do.
LL
Tuesday, July 30, 2019
Wednesday, May 22, 2019
Who's in charge
I am a few weeks past my latest GI appointment. My old GI left so I found myself looking for a new one. This wasn't something I actually wanted but felt like it would be wise to have one in my corner.
I was actually a little excited at the thought of this new doctor. He had come highly recommended due to his specialty being Crohn's and Colitis. He has also been at Vanderbilt and I felt like would be very up to date on the newest Crohn's stuff.
After getting back into the patient room I waited over an hour. So by the time I actually saw the doctor I was an hour and a half past my appointment time. To say I was upset was an understatement. The only reason I was there was to establish him as my doctor. I wasn't sick. I felt stuck. I knew I needed to establish him as my doctor and that is the only reason I stayed.
When he came into the room he ran through my medical history as he understood it. He asked me to fill in the holes where ever I saw them. It was a productive conversation for him to get the full picture of my health.
But then he said something that floored me.....
"Since you are in remission and haven't had any health issues except a recent minor surgery, I think we should put you on Remicade or Humira".
I explained that I had had some joint pain and minor stomach issues that started about 4 years ago and I radically changed my diet to help my Crohn's stay in remission. The no sugar no grains way of eating had gotten rid of my joint aches and brought my stomach issues to a halt. I had been feeling great! He seemed a little surprised that sugar had helped so much. But then went right back into his talk about how the medication would keep me healthy.
If I'm really honest I would tell you that I knew this was going to happen. I knew that I would hit roadblocks when I approached a GI doctor with diet conversation.
YES YES YES I know that GI doctors deal with the GUT and diet should be a key part of EVERY conversation that a GI doctor is having. But it's not. In fact, I have had 5 GI doctors, 2 colon surgeons in the past 10 years and NEVER have I had ONE talk about diet or food modification. All of my diet modifications have come from studying and learning myself.
So here I sat. Not sick and a doctor telling me I needed to go on medications. The really hard part for me in this, is that I believe he is a good doctor. In fact I believe he could really help me if ever I was very ill. But I'm not. So the dance is to keep him in my corner without following his protocol. Doctor's don't seem to like that way of thinking. He kept spewing information about multiple options of drugs. All of the drugs he was naming were infusion type drugs or monthly shots. The infusion medication would require me to go to an infusion center every 6 weeks and receive the drug for 3 hours or and it would cost $1500-$2000 every time!!!!! Don't even get me started on the side effects.
Oh, and remember......
I'm NOT SICK!!!
Here are a few questions that I asked the doctor:
(Shhhhhhh, I already knew the answer, but I wanted to hear him say it out loud)
Q- How fast does the medicine work?
A-Very quickly! We actually give it to patients in the hospital to deal with Crohn's flare-ups.
My response- So, What if I wait and IF I have one of those types of flare-ups, you could give it then?
His answer- Well, you could do that. But you could start taking it now and avoid that flare up.
In my head- "HUH, so I could take a crazy expensive drug from now until Jesus comes back and maybe keep me from being sick and deal with all the insane side effects, or...................
I could eat a modified diet and continue on the same path that I have been on for 4 years with no medicines, and maybe one day have to take a crazy drug that works almost immediately?"
I felt like I was in the twilight zone.
Q- How long would I need to be on this drug?
A- Um, forever. Or until a newer drug came out.
(Insert fancy doctor, proud of himself voice) "And there are some great new drugs that are coming out in the next 8-10 years."
He read my face......
He comes back with- But we could just put you on it for 6 months or so and see how you feel then. And if you are feeling good and no signs of flare-ups we could just take you off.
At that point, I was so confused by the conversation that I lost all words.
I didn't understand.....
Did he say ....."If you're feeling good and no signs of a flareup we can take you off the medicine?"
BUT....BUT.....BUT..... I feel like that now??!!?!?!?!?!
He followed up his statement by saying that if I went on the medicine and then came off in 6 months I could never go on it again. Because my body would build up antibodies to it and it wouldn't be a useful drug.
So let's recap:
The doctor wants me to go on medicine to keep me in remission.
But I haven't been on any medicine for 8 years and I'm in remission already.
The doctor wants me to go on a life long drug that would cost me a fortune indefinitely.
But I could take this drug at any point IF I needed it and it would work immediately.
The doctor wants me to take a drug I currently don't need, but if I stop taking the drug when I don't need it, I can never go back on it.
I guess he could tell by the look on my face and the questions that I had asked, that I wasn't going to say yes. He followed all of it up by saying, "Why don't we get some labs and see if there is anything going on that we don't know about." He went on to say that I could go home and think about all of the options he had given and I could come back in a month and we could discuss everything.
I went down to the lab and had a bazillion vials of blood drawn. He ran all sorts of test. I had specifically asked him to run a celiac panel because that is something that has never been ruled out. After I finished my date with the vampire I left and went home.
The farther I got from the office the angrier I got.
I was mad that we didn't ever talk about the amazing way I feel because of all that I have done on the diet front.
I was mad that his biggest "fix" was to use medicine.
I was mad for the amount of courage it took to show him that I was informed, well read, and educated about my health.
I was mad that I felt nervous to do something different than mainstream medicine, even though it is MY HEALTH.
I was mad for all of the people who walk into doctors offices and don't feel like they have options other than the ones their doctor gives them.
I was mad for all of the people who feel like they just have to accept the pills, needles, injections, and don't have the option for other ways.
Where am I now.....
My labs came back.
43 tests were run on my blood. None of them came back with issues. ALL are within normal ranges.
and the Celiac test was negative.
I fully understand the way this doctor is coming at my disease. There are 3 types of medical approaches to Crohn's all depending on where you are in your disease.
Again, I think he is a great doctor. I actually have another appointment with him for one of my kids. But it will be to diagnose her. We will think, learn, and talk long and hard about the many options for how to treat whatever they might find. But we will also be discussing diet and root cause in this appointment.
The next doctor's appointment you go to, ask lots of questions. Be prepared. You are your best advocate and you have to live with the sickness, disease, and treatments. Medicine might be the right road for you, your sickness, but it might not be. The choice is yours. Remember.... at the end of the day, you pay them for a service. You are in charge.
If you want to know more about the drugs that have been recommended to me:
Remicade
Humira
The diet I chose instead:
Specific Carbohydrate Diet
LL
PS- He sat with me for 45 minutes. That is why he was so late getting to my appointment. He has a great bedside manner and really spent time. I have to give him props for that.
I was actually a little excited at the thought of this new doctor. He had come highly recommended due to his specialty being Crohn's and Colitis. He has also been at Vanderbilt and I felt like would be very up to date on the newest Crohn's stuff.
After getting back into the patient room I waited over an hour. So by the time I actually saw the doctor I was an hour and a half past my appointment time. To say I was upset was an understatement. The only reason I was there was to establish him as my doctor. I wasn't sick. I felt stuck. I knew I needed to establish him as my doctor and that is the only reason I stayed.
When he came into the room he ran through my medical history as he understood it. He asked me to fill in the holes where ever I saw them. It was a productive conversation for him to get the full picture of my health.
But then he said something that floored me.....
"Since you are in remission and haven't had any health issues except a recent minor surgery, I think we should put you on Remicade or Humira".
I explained that I had had some joint pain and minor stomach issues that started about 4 years ago and I radically changed my diet to help my Crohn's stay in remission. The no sugar no grains way of eating had gotten rid of my joint aches and brought my stomach issues to a halt. I had been feeling great! He seemed a little surprised that sugar had helped so much. But then went right back into his talk about how the medication would keep me healthy.
If I'm really honest I would tell you that I knew this was going to happen. I knew that I would hit roadblocks when I approached a GI doctor with diet conversation.
YES YES YES I know that GI doctors deal with the GUT and diet should be a key part of EVERY conversation that a GI doctor is having. But it's not. In fact, I have had 5 GI doctors, 2 colon surgeons in the past 10 years and NEVER have I had ONE talk about diet or food modification. All of my diet modifications have come from studying and learning myself.
So here I sat. Not sick and a doctor telling me I needed to go on medications. The really hard part for me in this, is that I believe he is a good doctor. In fact I believe he could really help me if ever I was very ill. But I'm not. So the dance is to keep him in my corner without following his protocol. Doctor's don't seem to like that way of thinking. He kept spewing information about multiple options of drugs. All of the drugs he was naming were infusion type drugs or monthly shots. The infusion medication would require me to go to an infusion center every 6 weeks and receive the drug for 3 hours or and it would cost $1500-$2000 every time!!!!! Don't even get me started on the side effects.
Oh, and remember......
I'm NOT SICK!!!
Here are a few questions that I asked the doctor:
(Shhhhhhh, I already knew the answer, but I wanted to hear him say it out loud)
Q- How fast does the medicine work?
A-Very quickly! We actually give it to patients in the hospital to deal with Crohn's flare-ups.
My response- So, What if I wait and IF I have one of those types of flare-ups, you could give it then?
His answer- Well, you could do that. But you could start taking it now and avoid that flare up.
In my head- "HUH, so I could take a crazy expensive drug from now until Jesus comes back and maybe keep me from being sick and deal with all the insane side effects, or...................
I could eat a modified diet and continue on the same path that I have been on for 4 years with no medicines, and maybe one day have to take a crazy drug that works almost immediately?"
I felt like I was in the twilight zone.
Q- How long would I need to be on this drug?
A- Um, forever. Or until a newer drug came out.
(Insert fancy doctor, proud of himself voice) "And there are some great new drugs that are coming out in the next 8-10 years."
He read my face......
He comes back with- But we could just put you on it for 6 months or so and see how you feel then. And if you are feeling good and no signs of flare-ups we could just take you off.
At that point, I was so confused by the conversation that I lost all words.
I didn't understand.....
Did he say ....."If you're feeling good and no signs of a flareup we can take you off the medicine?"
BUT....BUT.....BUT..... I feel like that now??!!?!?!?!?!
He followed up his statement by saying that if I went on the medicine and then came off in 6 months I could never go on it again. Because my body would build up antibodies to it and it wouldn't be a useful drug.
So let's recap:
The doctor wants me to go on medicine to keep me in remission.
But I haven't been on any medicine for 8 years and I'm in remission already.
The doctor wants me to go on a life long drug that would cost me a fortune indefinitely.
But I could take this drug at any point IF I needed it and it would work immediately.
The doctor wants me to take a drug I currently don't need, but if I stop taking the drug when I don't need it, I can never go back on it.
I guess he could tell by the look on my face and the questions that I had asked, that I wasn't going to say yes. He followed all of it up by saying, "Why don't we get some labs and see if there is anything going on that we don't know about." He went on to say that I could go home and think about all of the options he had given and I could come back in a month and we could discuss everything.
I went down to the lab and had a bazillion vials of blood drawn. He ran all sorts of test. I had specifically asked him to run a celiac panel because that is something that has never been ruled out. After I finished my date with the vampire I left and went home.
The farther I got from the office the angrier I got.
I was mad that we didn't ever talk about the amazing way I feel because of all that I have done on the diet front.
I was mad that his biggest "fix" was to use medicine.
I was mad for the amount of courage it took to show him that I was informed, well read, and educated about my health.
I was mad that I felt nervous to do something different than mainstream medicine, even though it is MY HEALTH.
I was mad for all of the people who walk into doctors offices and don't feel like they have options other than the ones their doctor gives them.
I was mad for all of the people who feel like they just have to accept the pills, needles, injections, and don't have the option for other ways.
Where am I now.....
My labs came back.
43 tests were run on my blood. None of them came back with issues. ALL are within normal ranges.
and the Celiac test was negative.
I fully understand the way this doctor is coming at my disease. There are 3 types of medical approaches to Crohn's all depending on where you are in your disease.
- Achieving remission (the absence of symptoms)
- Maintaining remission (prevention of symptoms or flare-ups)
- Improving your quality of life
Again, I think he is a great doctor. I actually have another appointment with him for one of my kids. But it will be to diagnose her. We will think, learn, and talk long and hard about the many options for how to treat whatever they might find. But we will also be discussing diet and root cause in this appointment.
The next doctor's appointment you go to, ask lots of questions. Be prepared. You are your best advocate and you have to live with the sickness, disease, and treatments. Medicine might be the right road for you, your sickness, but it might not be. The choice is yours. Remember.... at the end of the day, you pay them for a service. You are in charge.
If you want to know more about the drugs that have been recommended to me:
Remicade
Humira
The diet I chose instead:
Specific Carbohydrate Diet
LL
PS- He sat with me for 45 minutes. That is why he was so late getting to my appointment. He has a great bedside manner and really spent time. I have to give him props for that.
Monday, March 25, 2019
Hope in the pain
It has been a hard few days and some of the most beautiful ever. When I left my home we had 4 children, plus one son-in-law, plus one grandson. I now have returned back with an additional, beautiful, tiny, little granddaughter in the mix. That has been the beautiful part of my past few days.
The hard part has been that one of my children has been struggling with stomach stuff. She is sick and can hardly eat. She is in pain and has very low energy. She has been sent to the hospital twice in two weeks. Dehydrated, scared, and doesn't live near enough for this momma to just drop by and check in. It has been so incredibly hard on me. To watch someone you love go through something that you can't stop, change, or make better is excruciating. But it doesn't compare to what I know she feels. How do I know? Because I have been there. I have sat in the sick seat. I have felt alone, confused, and in pain. But because I have sat in that seat I also know that it can get better. I also know that it doesn't get better for some people. Some people stay sick for a very long time. Some people die sick.
So what do we do with this reality?
We hope.
We hope with the idea that we can, could, might, maybe get better. Hope is something that could only come from God. It is a gift that has come through salvation and redemption. The idea of hope comes from the cross. It comes from death, and despair being redeemed through resurrection. I am not sure how people can go through any pain that this world has to offer without hope. Hope that one day, someday all will be made right. We will be fully healed, reconciled, loved, welcomed, not ashamed, not alone, without grief and in the arms of a Heavenly Father who has always promised to never leave us or forsake us.
Life is hard. It is painful, both in physical sickness and in mental anguish. But it is not hopeless with Jesus. I hope moment by moment. Praying that the pain will be eased, the grief lightened, the dispair eased. I know that it might be today, in this body, in this life, that relief will come, but I know that it might not. Getting up each day with a mountain or a kernel of hope is a gift that I pray you to have. Let it be what sustains you in your hurt and carries you in your pain. Hebrews 13:6 So we can say with confidence, "The Lord is my helper so I will have no fear. What can mere people do to me?"
My Prayer is that you understand this hope that I talk about. Whatever your pain, I pray that you come to understand that God is with you, beside you, in it with you. I pray that you will feel the loving arms of our Heavenly Father wrapping around you and sitting with you in your heartache.
LL
My Prayer is that you understand this hope that I talk about. Whatever your pain, I pray that you come to understand that God is with you, beside you, in it with you. I pray that you will feel the loving arms of our Heavenly Father wrapping around you and sitting with you in your heartache.
LL
Sunday, February 24, 2019
My parallel
When I talk about my world with Crohn's disease and or with a strict diet I often talk about how difficult it is to eat and live the way I know that I should to best help my body. Recently I have been talking about this and realized how similar it all sounds to my spiritual journey. Paul talks in Romans 7:15-16 and says this:
I don't really understand myself, for I want to do what is right, but I don't do it. Instead, I do what I hate. But if I know that what I am doing is wrong, this shows that I agree that the law is good.
These verses could just as easily be talking about the way I should be eating and taking care of my body as they are about sin specifically. I have come to see that my struggle with eating is the same as my struggle with sin. They are both struggles of this world and of the flesh I was recently on a mission trip and a doctor on our trip referred to our stomachs being our god. This has really hit home for me. I grew up in the church. I know all about the Ten Commandments and the first one being "..have no other gods", I began to see that my stomach was a god. Was I putting it before God? Maybe, sometimes. I don't really know the answer. But I do know that my stomach was something in my life that controlled my choices. Directed my paths (sometimes literally). When it growled or had a request...I submitted. Even though sometimes that submission would cause the rest of my body great harm. In verse 16 it says "But if I know what I am doing is wrong, this shows that I agree that the law is good." After I have given in and submitted to my stomach with things that I shouldn't, I feel guilty. I regret that decision. Yes, sometimes it is because of the physical result of my choice, but sometimes it is because I just simply know better. I beat myself up because I know I should have chosen differently. That tells me that I agree that there is another way, a better way. Paul goes on in Romans 7:17- 20 to say: So I am not the one doing wrong; it is sin in me that does it. And I know that nothing good lives in me, that is, in my sinful nature. I want to do what is right, but I can't. I want to do what is good, but I don't. I don't want to do what is wrong, but I do it anyway. But if I do what I don't want to, I am not really the one doing what is wrong; it is sin living in me that does it.
Paul speaks here of the sin that lives in us. These verses could leave me feeling pretty hopeless. Both for my sinful behavior in making my stomach a god and in other sins. But Paul goes on in Romans 8:5-8 and says this:
Those who live according to the flesh, have their minds set on what the flesh desires, but those who live in accordance with the Spirit have their minds set on what the Spirit desires. The mind governed by the flesh is death, but the mind governed by the Spirit is life and peace. The mind governed by the flesh is hostile to God; it does not submit to God law, nor can it do so. Those who are in the realm of the flesh can not please God.
This tells me that through Christ in me I can make different choices. I can choose to make healthy food choices and respect my body as the temple it is. I can choose to make God my God and not my stomach. Without Christ in me there is no fight. Our flesh wins. But with Christ, I have the power of a resurrected God living in me that allows me to choose a different way.
The same goes for other sins. Be it lying, stealing, gossiping, shows that are bad, losing my temper, etc etc. We/I can choose to live differently because of Christ in me. Is it hard? Yes. How do we live and make choices of good health in a world that is full of bad choices?
I struggle constantly with trying to not be consumed with thoughts of food, both healthy and unhealthy food, but everywhere I turn is food or events that require food. We live in a society that is centered around eating. I want to make good choices, I need to make good choices, but it seems like such an uphill climb. So I compromise... SIGH. I eat a bite of the ice cream. Or salad dressing with sugar in it. Or corn tortillas. I hate myself afterward.
"I don’t really understand myself, for I want to do what is right, but I don’t do it. Instead, I do what I hate."
It is a journey that I pray gets easier. The burden that I bear is not too much because I do not fight alone. Christ walks and fights with me. So whatever your struggle is....whatever the sin that entangles you is (Hebrews 12:1) know that there is a God who will walk with you. He will hold you in your struggle and forgive you in your sin. You do not have to journey alone.
I don't really understand myself, for I want to do what is right, but I don't do it. Instead, I do what I hate. But if I know that what I am doing is wrong, this shows that I agree that the law is good.
These verses could just as easily be talking about the way I should be eating and taking care of my body as they are about sin specifically. I have come to see that my struggle with eating is the same as my struggle with sin. They are both struggles of this world and of the flesh I was recently on a mission trip and a doctor on our trip referred to our stomachs being our god. This has really hit home for me. I grew up in the church. I know all about the Ten Commandments and the first one being "..have no other gods", I began to see that my stomach was a god. Was I putting it before God? Maybe, sometimes. I don't really know the answer. But I do know that my stomach was something in my life that controlled my choices. Directed my paths (sometimes literally). When it growled or had a request...I submitted. Even though sometimes that submission would cause the rest of my body great harm. In verse 16 it says "But if I know what I am doing is wrong, this shows that I agree that the law is good." After I have given in and submitted to my stomach with things that I shouldn't, I feel guilty. I regret that decision. Yes, sometimes it is because of the physical result of my choice, but sometimes it is because I just simply know better. I beat myself up because I know I should have chosen differently. That tells me that I agree that there is another way, a better way. Paul goes on in Romans 7:17- 20 to say: So I am not the one doing wrong; it is sin in me that does it. And I know that nothing good lives in me, that is, in my sinful nature. I want to do what is right, but I can't. I want to do what is good, but I don't. I don't want to do what is wrong, but I do it anyway. But if I do what I don't want to, I am not really the one doing what is wrong; it is sin living in me that does it.
Paul speaks here of the sin that lives in us. These verses could leave me feeling pretty hopeless. Both for my sinful behavior in making my stomach a god and in other sins. But Paul goes on in Romans 8:5-8 and says this:
Those who live according to the flesh, have their minds set on what the flesh desires, but those who live in accordance with the Spirit have their minds set on what the Spirit desires. The mind governed by the flesh is death, but the mind governed by the Spirit is life and peace. The mind governed by the flesh is hostile to God; it does not submit to God law, nor can it do so. Those who are in the realm of the flesh can not please God.
This tells me that through Christ in me I can make different choices. I can choose to make healthy food choices and respect my body as the temple it is. I can choose to make God my God and not my stomach. Without Christ in me there is no fight. Our flesh wins. But with Christ, I have the power of a resurrected God living in me that allows me to choose a different way.
The same goes for other sins. Be it lying, stealing, gossiping, shows that are bad, losing my temper, etc etc. We/I can choose to live differently because of Christ in me. Is it hard? Yes. How do we live and make choices of good health in a world that is full of bad choices?
I struggle constantly with trying to not be consumed with thoughts of food, both healthy and unhealthy food, but everywhere I turn is food or events that require food. We live in a society that is centered around eating. I want to make good choices, I need to make good choices, but it seems like such an uphill climb. So I compromise... SIGH. I eat a bite of the ice cream. Or salad dressing with sugar in it. Or corn tortillas. I hate myself afterward.
"I don’t really understand myself, for I want to do what is right, but I don’t do it. Instead, I do what I hate."
It is a journey that I pray gets easier. The burden that I bear is not too much because I do not fight alone. Christ walks and fights with me. So whatever your struggle is....whatever the sin that entangles you is (Hebrews 12:1) know that there is a God who will walk with you. He will hold you in your struggle and forgive you in your sin. You do not have to journey alone.
Friday, February 22, 2019
What do I eat on the SCD as of right now
First, let me say that I am really new to all of this. Second I really have adopted the mindset of "doing the best you can with what you have". At different points of my food journey, we have had different budgets. We have also had different time budgets and allowances. We have also had different "life happenings". All of these things affect us and how we are able to fully invest in a food lifestyle. But I firmly believe that ANY step forward is a forward step. So if you are trying to change the way you or your house eats, then make any change. You don't have to do an overhaul on the first day. YOur body will hate you, your house will hate you and your bank account will probably hate you. There are some hard and fast rules that exist for the SCD lifestyle. I don't follow all of them. I try to follow as many as I can. Coffee is supposed to be light. Yeah, that one ain't happening. You should always know your meat source and it should be grass-fed and organic. I try this but my budget doesn't always allow it. But eating chicken that is antibiotic free that I cook at home is better than processed chicken nuggets from a drive up. When meat is on sale and I can buy the way I want, organic and grass-fed, then I do. But I don't beat myself up for stuff.
Here you go. This is what a typical meal plan looks like for us. Maybe there are some new ideas on here for you. Or maybe you can share some with me.
Coffee
I'll put coffee first because it is #1. It is my first love in the mornings. Through coffee, I love my family better. Without coffee. Well, let's just say I am to be avoided. My favorite it coffee with some kind of heavy sugar cream and a nice whipped up something on top.
Then I began eating Paleo a few years back and that changed how I drank my coffee. I tried many things:
coconut milk and coconut sugar
almond milk and maple syrup
black
tea
mixed almond and coconut
canned coconut
coconut and dates
None of which I loved. But I did learn to like some of them more and more. My favorite was Coconut milk and maple syrup. Or bulletproof coffee. (grass fed butter, almond milk, coconut oil, honey, and vanilla)
BUT.....that was my old life. My life before SCD.
Now honey is the only sweetener and coconut milk or almond milk are my only "creams". ....sigh.....
and tea or black coffee.
I did recently discover soaked cashews + dates+vanilla bean+full fat coconut milk= creamy coffee
It is yummy but...it takes work and it's pricey when you really look at the overall cost.
My goal is to LOVE black coffee. Cheaper and easier
Breakfast
coffee.
Don't judge. I'm trying to fix this broken part of my day. But I'm not awake enough to think through what to eat let alone what to cook ....and from scratch.
In the warmer months, I am a BIG smoothie person. That's easy. Fruit. Honey. DONE. ok ok yeah yeah yeah you can add veggies.
I like eggs but with stuff. I do enjoy bacon and eggs and will sometimes eat that for lunch. An omelet is also a great option. But I have never been a breakfast eater or cooker. So this was a challenge before my new way of eating.
Lunch
I have found that I am in the best mood and most willing to cook or experiment for lunchtime. I have the rare privilege of getting to be a stay at home mom.
Here are some things I rotate for lunch:
Salmon and zucchini
salad
Shredded chicken (I will sometimes make a huge crockpot batch at the beginning of the week.)
Smoothies
zucchini noodles and shrimp
soup in the instant pot
simple chicken salad with plantain chips are an easy lunch. Especially if I have to make shredded chicken at the beginning of the week.
....or sometimes I just pout and drink a cup of grape juice some other juice and don't eat at all. Because I am lazy, tired, or in a food mood swing. If this happens then I am starving by snack time and eat apples and legal peanut butter. A LOT of it. Or chili lime plantain chips. Or pork rinds (which are growing on me).
Chips and salsa used to be my lunch go to. I could eat small snacks all day and then eat real food for my dinner meal. But now that I am really having to fight through my food choices and I have to be more intentional with lunch. I have a feeling the further I get down this SCD road the same thing will happen with Breakfast and I will get better with it and more intentional. But for now, I am just trying to get lunch and dinner under control.
Dinner
Dinner is another beast altogether. This meal has always brought more stress for me than any other. It is when there are 6 opinions about what is going on the table. Questions about what's for dinner, when's dinner, do we have to eat at the table, what time will dad be home, etc. etc. That doesn't even begin to get into the "ewwwwww what is that? Do have to eat ALL of it?" Sweet mercy the dinner time stress.
In the past, when I was only eating Paleo I would typically fix the house one thing and then myself something else. It just made life easier...and cheaper. But since then I have had a change of heart. After dropping almost 6 grand on surgeries and doctors in 3 months I figure cost was something we needed to re-evaluate. If I truly believed that eating healthier meant you were actually healthier and that meant fewer trips to the doctor, then eating clean definitely had to be cheaper than doctor bills. I don't want to digress away from dinner too much, but the bottom line is that this mindset change caused me to re-think my groceries. It also required me to be less territorial about my "healthy" food and allow the entire house to eat them too. After all, I want my house to be healthy not just me, right?
I won't lie. I do have to bite my tongue when someone is eating the last avocado or munching on my parmesan cheese crips. But keeping "health" in mind I am able to take a deep breath and share.
So here is what dinner looks like recently:
First off Against all Grain is a great website and youtube channel. Danielle Walker doesn't specifically follow SCD but she is very close to it. And the recipes that she uses normally have options that include SCD. She is beautiful, her food is beautiful, her attitude is beautiful.
Cashew cream sauce over chicken with a veggie or over zoodles (this recipe calls for nutritional yeast. You can omit that if you want a creamy sauce. Add it for a cheesy flavor.)
Salmon and zucchini (if I didn't eat it for lunch and if the kids aren't joining. They aren't fish fans)
Creamy Mexican chicken soup
Steak and veggies
Hamburgers with or without buns for those who can eat them and a veggie
Salads Salads Salads
Taco Salad (which is a go-to when the rest of the house is having tacos or nachos)
If I have eaten a larger lunch I will sometimes eat my 24-hour yogurt with a little honey and mixed berries. It is my favorite right now. The yogurt takes some work on the front end but once it's made, I have enough for the week.
There you go. Hopefully, my lists will continue to grow. My journey is forever expanding. There are still days that I order the kids a pizza and have a smoothie for myself for dinner, just because it is easy. Or even because I am not in the mood to talk my teenager into trying zucchini again. Soups and salads are my saving grace. When I need to fix the family an "old favorite" like spaghetti or nachos, I am able to easily eat something in my lane without totally derailing to SCD process.
DateNight
As if eating at home wasn't hard enough, eating out adds another level of complexity into my life. My husband and I do date night once a week. This has proven to be tremendously difficult. We love to eat out. We love our quiet, uninterrupted eating time, our conversations without the kids, eating without sharing. But trying to find a place that can accommodate all of my needs is next to impossible. This is not something I have figured out yet. My best answer right now is to just do the best I can. Stress is probably more of a trigger than food anyways. So being stressed about where to eat is not helpful.
Right now we go to restaurants and I eat a steak with salt and pepper as the seasoning (which you have to ask for). Or I do a salad with balsamic. The other night I was adventurous and we had Pho. Which had rice noodles (a SCD no-no) but gluten free and no additives. I truly enjoyed our date night and didn't feel sick afterward. The main point of SCD is not letting bad bacteria grow and feeding your guts with good. So eating simple foods, allows them to be digested and used quicker, therefore not growing bad bacteria. Rice is not simple. I honestly don't know if rice noodles actually hurt my stomach or not. Maybe it did and I just couldn't see it.
This is the biggest struggle right now. How to eat to live while actually still living. I am not fully sure how to do this. In a culture that lives to eat. And lives to eat things that are not good for us. It is hard to swim upstream.
I am a work in progress. Here is what my kitchen looked like yesterday. From left to right I will list what you see. CHicken in the crockpot for the week, Nutritional yeast, Ghee, Liquid aminos, Olive oil, milk cooking for 24- yogurt, yogurt jars, dates, cashews soaking in the Blendtec and my yogurt maker. Oh yeah and my mixer that wasn't being used yesterday.
Whew- This is my life in the kitchen while the kids were schooling and the dog was sleeping.
LL
Here you go. This is what a typical meal plan looks like for us. Maybe there are some new ideas on here for you. Or maybe you can share some with me.
Coffee
I'll put coffee first because it is #1. It is my first love in the mornings. Through coffee, I love my family better. Without coffee. Well, let's just say I am to be avoided. My favorite it coffee with some kind of heavy sugar cream and a nice whipped up something on top.
Then I began eating Paleo a few years back and that changed how I drank my coffee. I tried many things:
coconut milk and coconut sugar
almond milk and maple syrup
black
tea
mixed almond and coconut
canned coconut
coconut and dates
None of which I loved. But I did learn to like some of them more and more. My favorite was Coconut milk and maple syrup. Or bulletproof coffee. (grass fed butter, almond milk, coconut oil, honey, and vanilla)
BUT.....that was my old life. My life before SCD.
Now honey is the only sweetener and coconut milk or almond milk are my only "creams". ....sigh.....
and tea or black coffee.
I did recently discover soaked cashews + dates+vanilla bean+full fat coconut milk= creamy coffee
It is yummy but...it takes work and it's pricey when you really look at the overall cost.
My goal is to LOVE black coffee. Cheaper and easier
Breakfast
coffee.
Don't judge. I'm trying to fix this broken part of my day. But I'm not awake enough to think through what to eat let alone what to cook ....and from scratch.
In the warmer months, I am a BIG smoothie person. That's easy. Fruit. Honey. DONE. ok ok yeah yeah yeah you can add veggies.
I like eggs but with stuff. I do enjoy bacon and eggs and will sometimes eat that for lunch. An omelet is also a great option. But I have never been a breakfast eater or cooker. So this was a challenge before my new way of eating.
Lunch
I have found that I am in the best mood and most willing to cook or experiment for lunchtime. I have the rare privilege of getting to be a stay at home mom.
Here are some things I rotate for lunch:
Salmon and zucchini
salad
Shredded chicken (I will sometimes make a huge crockpot batch at the beginning of the week.)
Smoothies
zucchini noodles and shrimp
soup in the instant pot
simple chicken salad with plantain chips are an easy lunch. Especially if I have to make shredded chicken at the beginning of the week.
....or sometimes I just pout and drink a cup of grape juice some other juice and don't eat at all. Because I am lazy, tired, or in a food mood swing. If this happens then I am starving by snack time and eat apples and legal peanut butter. A LOT of it. Or chili lime plantain chips. Or pork rinds (which are growing on me).
Chips and salsa used to be my lunch go to. I could eat small snacks all day and then eat real food for my dinner meal. But now that I am really having to fight through my food choices and I have to be more intentional with lunch. I have a feeling the further I get down this SCD road the same thing will happen with Breakfast and I will get better with it and more intentional. But for now, I am just trying to get lunch and dinner under control.
Dinner
Dinner is another beast altogether. This meal has always brought more stress for me than any other. It is when there are 6 opinions about what is going on the table. Questions about what's for dinner, when's dinner, do we have to eat at the table, what time will dad be home, etc. etc. That doesn't even begin to get into the "ewwwwww what is that? Do have to eat ALL of it?" Sweet mercy the dinner time stress.
In the past, when I was only eating Paleo I would typically fix the house one thing and then myself something else. It just made life easier...and cheaper. But since then I have had a change of heart. After dropping almost 6 grand on surgeries and doctors in 3 months I figure cost was something we needed to re-evaluate. If I truly believed that eating healthier meant you were actually healthier and that meant fewer trips to the doctor, then eating clean definitely had to be cheaper than doctor bills. I don't want to digress away from dinner too much, but the bottom line is that this mindset change caused me to re-think my groceries. It also required me to be less territorial about my "healthy" food and allow the entire house to eat them too. After all, I want my house to be healthy not just me, right?
I won't lie. I do have to bite my tongue when someone is eating the last avocado or munching on my parmesan cheese crips. But keeping "health" in mind I am able to take a deep breath and share.
So here is what dinner looks like recently:
First off Against all Grain is a great website and youtube channel. Danielle Walker doesn't specifically follow SCD but she is very close to it. And the recipes that she uses normally have options that include SCD. She is beautiful, her food is beautiful, her attitude is beautiful.
Cashew cream sauce over chicken with a veggie or over zoodles (this recipe calls for nutritional yeast. You can omit that if you want a creamy sauce. Add it for a cheesy flavor.)
Salmon and zucchini (if I didn't eat it for lunch and if the kids aren't joining. They aren't fish fans)
Creamy Mexican chicken soup
Steak and veggies
Hamburgers with or without buns for those who can eat them and a veggie
Salads Salads Salads
Taco Salad (which is a go-to when the rest of the house is having tacos or nachos)
If I have eaten a larger lunch I will sometimes eat my 24-hour yogurt with a little honey and mixed berries. It is my favorite right now. The yogurt takes some work on the front end but once it's made, I have enough for the week.
There you go. Hopefully, my lists will continue to grow. My journey is forever expanding. There are still days that I order the kids a pizza and have a smoothie for myself for dinner, just because it is easy. Or even because I am not in the mood to talk my teenager into trying zucchini again. Soups and salads are my saving grace. When I need to fix the family an "old favorite" like spaghetti or nachos, I am able to easily eat something in my lane without totally derailing to SCD process.
DateNight
As if eating at home wasn't hard enough, eating out adds another level of complexity into my life. My husband and I do date night once a week. This has proven to be tremendously difficult. We love to eat out. We love our quiet, uninterrupted eating time, our conversations without the kids, eating without sharing. But trying to find a place that can accommodate all of my needs is next to impossible. This is not something I have figured out yet. My best answer right now is to just do the best I can. Stress is probably more of a trigger than food anyways. So being stressed about where to eat is not helpful.
Right now we go to restaurants and I eat a steak with salt and pepper as the seasoning (which you have to ask for). Or I do a salad with balsamic. The other night I was adventurous and we had Pho. Which had rice noodles (a SCD no-no) but gluten free and no additives. I truly enjoyed our date night and didn't feel sick afterward. The main point of SCD is not letting bad bacteria grow and feeding your guts with good. So eating simple foods, allows them to be digested and used quicker, therefore not growing bad bacteria. Rice is not simple. I honestly don't know if rice noodles actually hurt my stomach or not. Maybe it did and I just couldn't see it.
This is the biggest struggle right now. How to eat to live while actually still living. I am not fully sure how to do this. In a culture that lives to eat. And lives to eat things that are not good for us. It is hard to swim upstream.
I am a work in progress. Here is what my kitchen looked like yesterday. From left to right I will list what you see. CHicken in the crockpot for the week, Nutritional yeast, Ghee, Liquid aminos, Olive oil, milk cooking for 24- yogurt, yogurt jars, dates, cashews soaking in the Blendtec and my yogurt maker. Oh yeah and my mixer that wasn't being used yesterday.
Whew- This is my life in the kitchen while the kids were schooling and the dog was sleeping.
 |
LL
Thursday, February 21, 2019
SCD Specific Carbohydrate Diet, Crohn's disease and my journey to healing
So let's get real about this stupid diet. I'm on it. And I accept that it is good for me and will help heal my guts. But it totally sucks. I feel like a 3-year wanting to throw a tantrum and freak out because I want food that is easy, comforting, and makes me happy and right now THIS is not any of those things.
Ok whew! I feel better. (Tantrum over)
Let's back up a few steps and tell you how I got to this spot in time. Twelve or so years ago I was diagnosed with Crohn's disease. (If you are reading about SCD then more than likely you already know what Crohn's disease or Ulcerative Colitis is so no need to click the link.)
Before being diagnosed I was on a health rollercoaster. I would be sick with pain and diarrhea (yes TMI but gut diseases are normally full of TMI so press on) for a day, then I wouldn't eat to prevent being sick, then I would be starving with no energy so I would eat, only to be sick with pain and diarrhea again. It was a cycle that went on for a year and a half. Doctors for that my gallbladder was full of stones and assumed that was my problem. So I had my gallbladder removed. Felt better for about 6 weeks. Then I went right back to being sick. Then the medicines game started. One and 2 pills 3 times a day turned into more and more. At one point I was taking 16-18 pills a day. INSANITY. That went on for a year or so and then I got a stomach bug. That stomach bug + Crohn's landed me in the hospital for a week.
Fast forward a little while. Out of the hospital and on a buttload of pills, I finally reach "healthy". Now, in all honesty, it WAS the "healthiest" I had been in a long time. But I now know that health is about perspective. "Healthy" while being dosed with prednisone and other crazy drugs is not what I would consider healthy but that is another blog for another day. So let's just say I was symptom-free (on pills) and my doctor referred me to a surgeon. That surgeon suggested that we remove the diseased portion of my colon. Because I don't have severe Crohn's that has multiple places of inflammation and scarring, removing a ten-inch section would be removing the only portion affected. So I agreed.
Fast forward some more. After my colon resection, I went into full remission. MY body was behaving "normal". Especially in comparing it to the past 3 years of sick, dosed, hospitalized, surgery laden, person I had been. The only medicine I was on was a sulfa drug meant to help keep me in remission. I continued to see my doctor for regular check-ups and eventually asked to stop that drug (because I thought it was useless). Years have passed. In fact, it has been ten years since my colon resection.
If you will notice in my story I never mention diet. I never mentioned food at all. That is because it was NEVER mentioned to me. Since my first diagnosis, I have lived in 3 states and had 4 doctors and 2 surgeons. Not ONE of them has ever mentioned food.
I HAVE A FREAKING GUT DISEASE!!!!!!!!
Years after my resection and reaching remission, I started doing some reading. One day I was sitting in my living room and I proclaimed to my husband, "I know Crohn's is incurable. I know that one day it will come back and I will have to deal with it again. But medicine will NOT be my first choice. I will eat rocks and dirt before I live that life again." I wasn't having any signs or symptoms of Crohn's. But I also was eating anything I wanted. I had simply determined that if symptoms arose again, I would be willing to be very drastic about my food choices and lifestyle changes in order to avoid the pill game. I had only done a small amount of reading, but somewhere in the stuff I had gotten my hands on I was impacted that there must be another way.
Moving on....
About 3 years ago I started to notice that my hands hurt. I would find myself rubbing them or putting a heating pad on them. Then I noticed sometimes that "ache" was in my wrists or elbows. So I started reading. Everything I was coming across was saying word like "Rheumatoid arthritis", "autoimmune"and "inflammation". That reading lead me to read more and more about autoimmune diseases. I began to see the connection between my symptoms and Crohn's disease. INFLAMMATION. I was scared. Could I be having signs of RA? I began to panic. I began to remember all of those pills, and blood draws, and side effects. I cried and cried. I did NOT want to go there again. "Why can't I just be normal?"
I regained my ..... whatever......I guess we will call it "resolve" and started reading more. This time I started reading about ways I could help myself. Everything I was coming across was diet related. Everything I was reading spoke of treating root issues of inflammation instead of the inflammation itself. I was confused. Why weren't my doctors saying this stuff? Why weren't my doctors talking about what was causing my sickness? I began to see things through new lenses. I decided then that I was going to cut the foods that were best known for causing inflammation. Sugar and Grains. So I did.
I am not a "moderation" person. I knew the only way for me to be successful at this was to completely cut it out. Cold Turkey. So I did. This sugar addict cut sugar the week of Halloween. It was NOT easy. Over the next 2 years, I learned to live in this way of eating. I would give in here and there based on special occasions or foods that I had learned wouldn't make me sick. For example, I discovered that corn was a no-no, but corn tortillas were fine. Rice was a no-no, but rice noodles didn't bother me. And cake...at a wedding...with thick gewy icing....well it made me sick.....but it was SO worth it. I learned to live within the parameters of my diet, my body's reaction and the world in which I lived.
For the last 6 months, my eating according to my diet has relaxed to about 75% of the time. And...... I have now found myself to be sick. Inflammation has caused 2 abscess spots that have had to be surgically dealt with and my surgeon was mentioning that he felt like I needed to go on a Biologic drug (Those are the Big Daddy drugs like Remicade, Humira, Cimzia). I am angry with myself. I am angry with my body. I am angry at the doctors. I am angry with our food culture. I desperately wish life was different and for that, I find myself really sad. But nevertheless, here I am. I had 1 of 2 surgeries in November and then the 2nd surgery planned for February.
In December, I began coming across this thing called the SCD diet. I had never heard of it before. I was intrigued that it was specific to gut diseases. And it offered a little hope that I could be very strict for a couple of years and then potentially move to a less strict version after my stomach/guts were healed. I ordered Breaking the Vicious Cycle and felt hopeful.
I goaled that after some scheduled international travel and the holidays I would adopt the SCD lifestyle. (There was no sense in losing my mind overseas or around at Christmas dinner) My plan was to start the diet after the holidays and giving myself as much time to heal before the planned Feb. surgery. That would give me 4 solid weeks on the diet before the surgery. Hoping that when they went to do that surgery they would find no signs of inflammation and I would be taking huge steps towards healing and a life without medicines.
So, here we are. It is mid-Feb. 2019. I have been on the SCD for 6 weeks. I am past my surgeries and I am prayerfully healing both on the inside and out. When the surgeon performed the 2nd surgery he noted that he did not see any signs of inflammation. That is SO exciting. I am two weeks into my healing from my surgery and I can tell you that my stomach feels better than it has in a long time. That too makes me excited.
But here is the reality check....
What doesn't make me excited is food. I find myself hating food right now. Mainly because it is exhausting. Everything I eat, I make from scratch. We live in a microwave, convenience food, quick living world and nothing about eating clean feels quick and easy. Reading labels and making everything from scratch takes time, energy, and thought.
I was so excited the other day when I bought horseradish hummus at Trader Joes. I thought, "this is great, it's quick, it's easy, it's store-bought, it's clean." I dove into my hummus with plantain chips (insert eye roll) and was so surprised at how much I liked it all. Then I started thinking about it and remembered that hummus = chickpeas. "Did I read something about chickpeas in that book?" I thought. So I grabbed my phone and typed in CHICKPEAS SCD in the google search. (This is my quick way to find legal and illegal foods. There are tons of sites that list legal and illegal foods for you. But I just google it.) .....CHICKPEAS ILLEGAL..... Sigh. Huff. Puff. Sigh. Here I am eating this strange food, that almost tastes really yummy, that I am actually excited to eat, only to find out that I can't. I go on to read that you can make your own hummus from white beans. White beans are simple carbs and chickpeas are not. I wanted to jump up and down and throw a tantrum.
"I don't want to make my own. I want to go into Trader Joes and walk to the shelf and buy it! I don't want to make EVERY.FREAKING.THING."
It is hard enough to change your food routines. But changing your taste buds is even harder. My body really likes Oreos, cheese dip, cupcakes, and soda. Why.....BECAUSE THEY TASTE GOOD! Teaching my body to find new foods that taste good is a huge challenge. That is why I got excited about the hummus and plantain chips. Not because they taste like queso and scoops, but because they were in the lane of almost being yummy. I knew I could train my taste buds for it to replace the junk my body thinks tastes good. If I looked at a "normal" eater and said, "I'm so excited about cashew cream sauce, fermented yogurt and plantain chips." They would think I'm on crack.
That's where I am right now. Trying to figure out how to truly live with this diet. I KNOW it is helping me. There is no doubt in my mind about that. But I want to live in a way that I am not constantly thinking about food. Everything I do revolves about food right now. Making it, buying the stuff to make it, taking it, containers to take it in, ingredient lists, etc. and don't even get me started on trying to do date nights or going out with our family.
I decided that this journey will be what I write about. Not because the world needs one more blog. But because I have to have a place to process. I have to have a place to throw a tantrum or be super excited. My family is precious. They patiently walk with me down my Crohn's road and sit at my table of strange foods. But they do not always want to hear about plantain chips and food mood swings. The beauty of writing it down here is people can read it....or not. My prayer is that someone will feel "not alone". Someone will read this and say "YES!" I so agree, why can't they make all yogurt 24-hour yogurt, with honey and no sugar? I don't intend to give a lot of back story for Crohns or SCD. I will try to link to those. There is so much information out there, that I don't need to be another research site. If you want to learn more about things click on the links. If you are walking this road too or walking it with someone, say HI. I would love to hear how your journey is going.
LL
Ok whew! I feel better. (Tantrum over)
Let's back up a few steps and tell you how I got to this spot in time. Twelve or so years ago I was diagnosed with Crohn's disease. (If you are reading about SCD then more than likely you already know what Crohn's disease or Ulcerative Colitis is so no need to click the link.)
Before being diagnosed I was on a health rollercoaster. I would be sick with pain and diarrhea (yes TMI but gut diseases are normally full of TMI so press on) for a day, then I wouldn't eat to prevent being sick, then I would be starving with no energy so I would eat, only to be sick with pain and diarrhea again. It was a cycle that went on for a year and a half. Doctors for that my gallbladder was full of stones and assumed that was my problem. So I had my gallbladder removed. Felt better for about 6 weeks. Then I went right back to being sick. Then the medicines game started. One and 2 pills 3 times a day turned into more and more. At one point I was taking 16-18 pills a day. INSANITY. That went on for a year or so and then I got a stomach bug. That stomach bug + Crohn's landed me in the hospital for a week.
Fast forward a little while. Out of the hospital and on a buttload of pills, I finally reach "healthy". Now, in all honesty, it WAS the "healthiest" I had been in a long time. But I now know that health is about perspective. "Healthy" while being dosed with prednisone and other crazy drugs is not what I would consider healthy but that is another blog for another day. So let's just say I was symptom-free (on pills) and my doctor referred me to a surgeon. That surgeon suggested that we remove the diseased portion of my colon. Because I don't have severe Crohn's that has multiple places of inflammation and scarring, removing a ten-inch section would be removing the only portion affected. So I agreed.
Fast forward some more. After my colon resection, I went into full remission. MY body was behaving "normal". Especially in comparing it to the past 3 years of sick, dosed, hospitalized, surgery laden, person I had been. The only medicine I was on was a sulfa drug meant to help keep me in remission. I continued to see my doctor for regular check-ups and eventually asked to stop that drug (because I thought it was useless). Years have passed. In fact, it has been ten years since my colon resection.
If you will notice in my story I never mention diet. I never mentioned food at all. That is because it was NEVER mentioned to me. Since my first diagnosis, I have lived in 3 states and had 4 doctors and 2 surgeons. Not ONE of them has ever mentioned food.
I HAVE A FREAKING GUT DISEASE!!!!!!!!
Years after my resection and reaching remission, I started doing some reading. One day I was sitting in my living room and I proclaimed to my husband, "I know Crohn's is incurable. I know that one day it will come back and I will have to deal with it again. But medicine will NOT be my first choice. I will eat rocks and dirt before I live that life again." I wasn't having any signs or symptoms of Crohn's. But I also was eating anything I wanted. I had simply determined that if symptoms arose again, I would be willing to be very drastic about my food choices and lifestyle changes in order to avoid the pill game. I had only done a small amount of reading, but somewhere in the stuff I had gotten my hands on I was impacted that there must be another way.
Moving on....
About 3 years ago I started to notice that my hands hurt. I would find myself rubbing them or putting a heating pad on them. Then I noticed sometimes that "ache" was in my wrists or elbows. So I started reading. Everything I was coming across was saying word like "Rheumatoid arthritis", "autoimmune"and "inflammation". That reading lead me to read more and more about autoimmune diseases. I began to see the connection between my symptoms and Crohn's disease. INFLAMMATION. I was scared. Could I be having signs of RA? I began to panic. I began to remember all of those pills, and blood draws, and side effects. I cried and cried. I did NOT want to go there again. "Why can't I just be normal?"
I regained my ..... whatever......I guess we will call it "resolve" and started reading more. This time I started reading about ways I could help myself. Everything I was coming across was diet related. Everything I was reading spoke of treating root issues of inflammation instead of the inflammation itself. I was confused. Why weren't my doctors saying this stuff? Why weren't my doctors talking about what was causing my sickness? I began to see things through new lenses. I decided then that I was going to cut the foods that were best known for causing inflammation. Sugar and Grains. So I did.
I am not a "moderation" person. I knew the only way for me to be successful at this was to completely cut it out. Cold Turkey. So I did. This sugar addict cut sugar the week of Halloween. It was NOT easy. Over the next 2 years, I learned to live in this way of eating. I would give in here and there based on special occasions or foods that I had learned wouldn't make me sick. For example, I discovered that corn was a no-no, but corn tortillas were fine. Rice was a no-no, but rice noodles didn't bother me. And cake...at a wedding...with thick gewy icing....well it made me sick.....but it was SO worth it. I learned to live within the parameters of my diet, my body's reaction and the world in which I lived.
For the last 6 months, my eating according to my diet has relaxed to about 75% of the time. And...... I have now found myself to be sick. Inflammation has caused 2 abscess spots that have had to be surgically dealt with and my surgeon was mentioning that he felt like I needed to go on a Biologic drug (Those are the Big Daddy drugs like Remicade, Humira, Cimzia). I am angry with myself. I am angry with my body. I am angry at the doctors. I am angry with our food culture. I desperately wish life was different and for that, I find myself really sad. But nevertheless, here I am. I had 1 of 2 surgeries in November and then the 2nd surgery planned for February.
In December, I began coming across this thing called the SCD diet. I had never heard of it before. I was intrigued that it was specific to gut diseases. And it offered a little hope that I could be very strict for a couple of years and then potentially move to a less strict version after my stomach/guts were healed. I ordered Breaking the Vicious Cycle and felt hopeful.
I goaled that after some scheduled international travel and the holidays I would adopt the SCD lifestyle. (There was no sense in losing my mind overseas or around at Christmas dinner) My plan was to start the diet after the holidays and giving myself as much time to heal before the planned Feb. surgery. That would give me 4 solid weeks on the diet before the surgery. Hoping that when they went to do that surgery they would find no signs of inflammation and I would be taking huge steps towards healing and a life without medicines.
So, here we are. It is mid-Feb. 2019. I have been on the SCD for 6 weeks. I am past my surgeries and I am prayerfully healing both on the inside and out. When the surgeon performed the 2nd surgery he noted that he did not see any signs of inflammation. That is SO exciting. I am two weeks into my healing from my surgery and I can tell you that my stomach feels better than it has in a long time. That too makes me excited.
But here is the reality check....
What doesn't make me excited is food. I find myself hating food right now. Mainly because it is exhausting. Everything I eat, I make from scratch. We live in a microwave, convenience food, quick living world and nothing about eating clean feels quick and easy. Reading labels and making everything from scratch takes time, energy, and thought.
I was so excited the other day when I bought horseradish hummus at Trader Joes. I thought, "this is great, it's quick, it's easy, it's store-bought, it's clean." I dove into my hummus with plantain chips (insert eye roll) and was so surprised at how much I liked it all. Then I started thinking about it and remembered that hummus = chickpeas. "Did I read something about chickpeas in that book?" I thought. So I grabbed my phone and typed in CHICKPEAS SCD in the google search. (This is my quick way to find legal and illegal foods. There are tons of sites that list legal and illegal foods for you. But I just google it.) .....CHICKPEAS ILLEGAL..... Sigh. Huff. Puff. Sigh. Here I am eating this strange food, that almost tastes really yummy, that I am actually excited to eat, only to find out that I can't. I go on to read that you can make your own hummus from white beans. White beans are simple carbs and chickpeas are not. I wanted to jump up and down and throw a tantrum.
"I don't want to make my own. I want to go into Trader Joes and walk to the shelf and buy it! I don't want to make EVERY.FREAKING.THING."
It is hard enough to change your food routines. But changing your taste buds is even harder. My body really likes Oreos, cheese dip, cupcakes, and soda. Why.....BECAUSE THEY TASTE GOOD! Teaching my body to find new foods that taste good is a huge challenge. That is why I got excited about the hummus and plantain chips. Not because they taste like queso and scoops, but because they were in the lane of almost being yummy. I knew I could train my taste buds for it to replace the junk my body thinks tastes good. If I looked at a "normal" eater and said, "I'm so excited about cashew cream sauce, fermented yogurt and plantain chips." They would think I'm on crack.
That's where I am right now. Trying to figure out how to truly live with this diet. I KNOW it is helping me. There is no doubt in my mind about that. But I want to live in a way that I am not constantly thinking about food. Everything I do revolves about food right now. Making it, buying the stuff to make it, taking it, containers to take it in, ingredient lists, etc. and don't even get me started on trying to do date nights or going out with our family.
I decided that this journey will be what I write about. Not because the world needs one more blog. But because I have to have a place to process. I have to have a place to throw a tantrum or be super excited. My family is precious. They patiently walk with me down my Crohn's road and sit at my table of strange foods. But they do not always want to hear about plantain chips and food mood swings. The beauty of writing it down here is people can read it....or not. My prayer is that someone will feel "not alone". Someone will read this and say "YES!" I so agree, why can't they make all yogurt 24-hour yogurt, with honey and no sugar? I don't intend to give a lot of back story for Crohns or SCD. I will try to link to those. There is so much information out there, that I don't need to be another research site. If you want to learn more about things click on the links. If you are walking this road too or walking it with someone, say HI. I would love to hear how your journey is going.
LL
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