Hey Hey Hey! What is going on all my UC friends?
How is everybody doing? Well it has been about 2 months since my last update for you guys. Forgive my absence but I have been living without internet or cell service for the past month and a half. It’s actually been kind of nice, reminds me of how we used to survive “back in the day!” Anyways, my name is Kyle. I am from WA state. I love Jesus. I love my amazing wife and I was diagnosed with UC just over a year ago, July 18th would be my UC anniversary : ) And have been climbing uphill ever since my diagnosis.
Today (August 8th) my wife and I are actually celebrating our family holiday “SUCK IT UC” DAY, believe it or not, one year ago today I was admitted to the hospital where I would spend 29 days because of a severe UC flare coupled with a bacteria infection known as C DIFF. So today we are sticking it to UC and celebrating living! : ) If you, your spouse, your kids, or someone in your family is suffering from UC find ways to remind yourselves that things will get better, it’s important to celebrate and keep our focus on our victories.
Alright back to the update, last time I blogged I told you guys that I had an allergic reaction to Remicade and was going to be placed on Humira. Well, I started out with the four shots of Humira, and much like Adam’s story with Humira 4-5 days later I started to notice a slight pain in my right shoulder, being aware of Adam’s experience, I called my GI and let him know when it was time for my next 2 shots. He advised me to continue but to keep an eye on things. Two more shots in the legs and here we go. When it was time to take my next single shot, one month into Humira, I noticed these red shots on my feet and ankles. Nothing like Adam or others have shown, but even my wife said she noticed some similarities, I called the GI and he advised me to hold off and come in and see him if things haven’t cleared up in a week. His thinking was it was an Athlete’s foot type of fungal infection. One week goes by and I am applying the OTC cream he advised and these spots are not going away, now thank the Lord they are not getting any worse but they are not clearing up. So I made the appointment with my GI, still being advised not to take my Humira shot.
Now let me just back track for you, my wife and are all in on SCD. We started right around the same time I started noticing the red spots on my feet. So my meeting with my GI was one month past my last Humira shot and one month since starting the SCD and things have been going pretty well. I would say since being diagnosed I am feeling as good as I have felt in a while being on the SCD. So going into my meeting with my GI, my plan was to tell him I wanted off the Humira and wanted to be solely on the SCD.
Here we go; I had prepared myself throughly for this conversation with my GI because I know doctors are usually medicine first and I wasn’t sure how things would work out. I was blown away by my GI’s response. He is so supportive of my wife and I going solely on the SCD. He has given us a few “back-ups” just in case things start to flare at any point. But his first words when I told him about the Humira effects were, “we gotta get you off this stuff!” I am so blessed by the GI that I truly feel the Lord brought. He has been at my side every step of the way and so supportive of my wife and I through this whole process.
So after a year of wanting to start the SCD, here we are, ALL IN! Medicine is no longer an option and we are going for it : ) And just a small piece of advice for married couples, if you are going to try SCD, do it with one another, it has made things so much easier having my wife support me while making this huge change in our lives. Here is the truth though: I am super excited. It has definitely been challenging at times (eating out) but I have truly felt this whole time this was the best option for us.
So for all my SCDer’s out there. I gotta couple questions for you:
1. What things surprised you as legals and illegals when you first started the diet?
2. What the heck did you do for snacks? And what are good things to eat to make sure your still getting your calories up?
3. How did you go about eating out? What places did you find make it easier for SCDer’s?
4. How long did it take before you noticed the majority of your symptoms going away? (All seems normal in my body except for left side tightness, not a serious cramp, just a pinch there at certain times of the day)
5. Any extra supplements I should be taking along with the SCD? (I noticed a lot of vitamins have hidden “starches,” So what brands specifically work for you?)
Happy Suck-It UC day to all my UC peeps!
May you Praise God in the joyful times, Seek God in the trying times, Worship God in the still moments that life brings, Trust God in moments when it hurts and thank God for each and every moment you get!
My name is Kyle. I am from the Evergreen State of Washington. I joined team UC in July of 2012. I am currently working in a school district seeking a full time teaching position. I also serve as a youth pastor in my local church and am sold out servant of Jesus Christ. I try to stay very active, current days it looks different, but I love all sports. I love playing basketball and running. I have an amazing wife, who I have been married to just over a year now, and let me tell you I married up! I would be willing to debate anyone that I got the cream of the crop : )
You make me want to go SCD just because of your awesomeness! I love that you continue to praise God even when your circumstances suck. For me, my UC reminds me that I am not in control and that I can only trust my health and body to the One who made it. He literally saved my life when Lialda stopped my organs from functioning. I have never felt better in my life than the moments and days after that experience. “You have made known to me the path of Life, you will fill me with joy in your presence, with eternal blessings at your right hand” Psalm 16:11. I am still struggling with the UC but when I put myself in His presence, I am more peaceful and better equipped to handle my day.
Amen Amen! Thanks for responding. I pray you continue to trust in God’s provision for your life! May his healing hand be upon all of us in our times of struggle. : )
1. some cheeses that we thought were legal turned out not to be. I’m very careful now with cheese and only buy cheese that states on the package how long it’s been aged or lactose-free. We also quit using Welch’s grape juice even though all claim it’s legal – it made me nervous because it says from concentrate. We use orange juice, apple cider and pineapple juice from Trader Joe’s.
2. Deviled eggs, jello with yogurt, applesauce (homemade)with yogurt, almond flour muffins, bananas
3. We rarely go out to eat. We went to a Japanese steak house and took a list that I found somewhere on the internet of what he can and can’t have. The chef looked at it -cooked his meat separate and veggies separate – no rice. He was fine afterwards. Church potlucks – he takes his own food and eats it – might get a few pieces of fresh fruit off the line if there is any even though that is something he doesn’t eat a lot of at home.
4. My son (18) has been on SCD for 2 years and he’s still a little up and down. Right now I’d say he’s symptom-free. He still takes Lialda.
5. Carlson liquid lemon fish oil. Country Life vitamin D capsule, GI Prohealth S. Boulardi and yogurt starter. Freeda buffered vitamin C powder – only when sick. My son also has allergies and takes Singulair every night at bedtime and uses a steroid nasal spray. He also uses low-dose naltrexone cream, and also uses Rowesa enemas from time to time. He’s not totally “home-free” yet.
We’re Christians too. I’ve never read your blogging before. Happy to hear someone else is turning to SCD and doing well! May the Lord Jesus continue to bless and heal you!
Thanks for the ideas. We are back on the basic now as I have had some symptoms returns. So it’s a lot of chicken noodle soup and broiled burgers. But we are getting through. Have noticed some weight loss but I am hoping I can kick the flare with just the diet! We shall see. Have a blessed Sunday!
And a very Happy Suck-It UC day to you too Kyle!!
Hi Kyle! And I thank God in all my remembrance of you (Philippians 1:3)! Seriously! I read what you wrote today and I’ve been thinking all day and smiling about it! You are a great encourager to all us UCer’s out there! I am so thankful for your story, your courage, your wisdom on trusting God, worship in the quiet times,trust Him in moments when it hurts. So true, and I have been learning over the years just that. The times UC has hurt have far outweighed the other times for me the last few years, and I too have been trying to start the SCD. I have been having a really hard time with allergies — I have anaphylaxis to all nuts, peanuts, nut/peanut oils, carrots, apples, watermelon, peaches, pears, I can’t even list it all! I have to carry an epi shot with me wherever I go because contacting these things makes me stop breathing if I don’t take the shot and get to the hospital fast. I wish I could figure out how to do the SCD with all this – I tried the chicken soup home made ( I make everything home made because of all these allergies anyway) but when I added the pureed carrots I was so, so sick for days. It threw me into another flare. So I feel a little stuck with all that…any suggestions??? But I thank God for hearing your story – you make me smile and have hope, and remind me that in suffering or in joy, I am always in the palm and strength of His hand — so I borrow His strength every day :) Thanks, too, Sharon, Bev and Terri – I hope you are all doing well – you have been great supports for me and so many others! God bless! – Hope
I have no major suggestions for you. Maybe the carrots were just added a little too early or you just didn’t respond to the carrots and they just need to stay out of your diet. Have you tried homemade apple sauce or pear sauce? It is more of a phase 1 food but it definitely gives you a whole lot more variety than just carrots : ) Glad my story could encourage you. May you have a blessed Sunday!
Its cool your wife does scd with you! I wish i had a partner. Aug 17 is one year on the scd for me! Doesnt feel that long haha i just stick to lots of meat and kefir banana smoothies. I dont go out to eat at all just because i dont know any organic restaurants near me. Im sure they would cook in weird oils and flavors that aren’t good for me. My favorite supplement is collagen! It makes my hair look so thick and strong. For symptoms, i still havent found remission and was just in the hospital for a week with a severe flare- i had a micro colon perforation and was on high dose prednisone. I still wanna stick with scd just because its a healthy diet. I just wish it did something for my UC since that is what i initially started it for.
You would hope to see some change after a year that is for sure. I know I have found a lot of things hidden in foods that I thought were legal. I am currently battling in a little mini-flare right now, going back to the intro phase of the diet and slowly working my way up this time. I was in a pretty good place with my UC when I started but I might of went a little too hard in the beginning. I am a little nervous of the low amount of calories I am taking in and have noticed I am loosing a little weight but I hope to be moving up the phase list as my symptoms slow down. Hoping not to have to go the steroid route, my doctor did give me a new type of steroid called, “uceris,” as a just in case but I have not tried it yet as I am trying to work out of the flare on diet only. Thanks for commenting!
Hi Kyle. Sorry to hear meds did not work for you. I was in the same boat. I also tried the scd unfortunately it did not work for me either. I was wondering how severe your UC has been classified as and if you have spoken to a surgeon about possible surgery?it has been a year since my takedown surgery and I now have a j-pouch. Curious if this has come up at all for you while being treated.
Surgery has not been a topic of conversation yet. Last summer when I had the UC flare and C. Diff combo package, they did discuss the idea of removing my colon but not at length and it never made it past a discussion. I think they like to use surgery as a last resort and I wasn’t in that boat just yet. Hopefully I see the success in the UC that so many others have seen and am able to continue with.
LOL…ah yes, the old UC C-diff ‘combo package’…
Not such a great deal…
The SCD has worked for me, coupled with supplements. Your attitude is great, and will work in your favor. Start slowly and progress even more slowly. The SCD diet is eventually awesome because you have tons of options, but at first you need to be pretty controlled and careful, especially if you’re symptomatic. You cannot simply jump into the legal list and start eating away. It has to be a progression of reintroducing foods to your GI tract after the initial intro diet. The websites pecanbread and SCDlifestyle give a lot of instruction in how to approach the diet. Especially check the pecanbread stages of SCD as this is something that Gotschall does not outline in her book very clearly. As for eating out, I would say to wait a few months at least. I am able to eat out occasionally now–I usually order steak or fish seasoned only with salt and pepper or a salad sans dressing–but it’s still rare that I eat. On the plus side, my family has saved a lot of money over the last year!
It sounds like your symptoms are pretty minimal right now so I can imagine it’s tempting to just jump in with the full diet but I still think going slow is the best way. I was very symptomatic when I started though, and we all have our own journeys with this. I still have some remaining symptoms even now, over a year on SCD, but life is way better than what it was before SCD. Since you have added healing/less inflammation from meds you’ll likely have an easier turnaround. Also, at some point start a good probiotic and L-Glutamine. Check out Bev’s posts for more on this!
whoops, meant “still rare that I eat out!” I eat though. I eat lots.
I totally appreciate your advice as I had not been fully directed on how to go about the diet other than the BVC book, which let’s be honest does not give us a full gameplan of how to go about the diet other than Intro and Post-intro. I found a great Intro/phase list and have been going off that as my symptoms have returned. Nothing as severe as I have seen in the past but I am definitely only seeing partial forming in the morning and the afternoon no form at all working about 1-3 BM’s per day, cramps and also experiencing some weight loss. So my wife and I are stepping back and going at it phase by phase. We just finished four days on the intro and are now adding things in from the phase one list, starting with apple sauce yesterday! How long before you started seeing change? Were you seeing weight loss in the first phases of diet? I have read not to be taking probiotic or any other vitamins during intro phase, was this true for you? Thanks for reading and chatting. I look forward to your response.
I am a Christian too (Lutheran [like everyone in the Midwest] from Wisconsin, living in Minnesota) Jeremiah 29:11 is one of the Bible verses that got me through my horrible flare and trying to figure out WHY this was happening to me. Psalm 27 is another good one — my fav!
I would just like to say first of all, that I LOVED your Crohn’s and Colitis Rap. That is the most awesome thing ever! Yeah I know that was like months ago, but it’s still awesome.
I’m sorry to hear about your allergic reactions… that’s no good!
I totally know what you mean about the “pinch” on the left side at certain times of day… that’s a weird one.
I am on a very strict diet, but it’s not SCD. It’s mainly the “anti-inflammatory diet”. A snap-shot of the anti-inflammatory diet: NO Gluten, NO Corn, NO Soy, NO Processed foods, NO Peanuts, NO GMO’s, NO non-organic dairy, NO non-organic eggs or meats, NO non-organic sugar, almost NO fructose… I think with UC what works for one person is not necessarily going to work for everyone else, so unfortunately, there is some trial and error that goes on.
Unfortunately in the U.S., they allow so much antibiotics into our food supply… which of course, disrupts our gut bacteria/intestinal flora, which we are trying to repopulate. That is the reason for the organic eggs, dairy, and meat… with organic eggs, dairy, and meat, you won’t be getting all of those unwanted antibiotics and growth hormones into your system (not to mention all the chemicals and pesticides and everything). I also do not use antibacterial soap… because that is killing not only the bad, but also the good bacteria that we need.
Oh, and my husband is on the same diet as me… but if they go out for lunch or something at work, then he eats gluten and a burger or whatever, but yes… I agree with you… it is MUCH easier if you and your spouse are on the same diet… I’m glad we don’t have all the things that I can’t eat here at home.
Snacking is hard. I never go anywhere without a banana. That is my main go-to. I take almonds and cashews with me usually too.
Like everyone else, I rarely eat out. Here in Minneapolis, we do have a few all local and organic restaurants… so there are a couple of places I can go (and are delicious), which is great. The places that I have found that I can go are “hipster” places if that makes any sense… I would search for “organic restaurants”… good place to start!
(Minneapolis/St. Paul folks – Namaste, Galactic Pizza, French Meadow, Seward Cafe and Ultimate Cafe are options!)
The Deflaming process takes time- make sure you get enough Vitamin D and TURMERIC is wonderful getting your body down from that inflamed state. I took Source Naturals Turmeric 1000 twice a day when I was really really flaring, then I was down to once a day for a long time, now I only take it on Mon, Wed, and Fri. (I buy my supplements on swansonvitamins.com – best prices that I’ve found, and they have sales every month.)
I drink about 8 oz. of coconut water every day (Vita Coco brand) and it helps me feel great! It’s super high in potassium, as people with GI issues cannot absorb potassium correctly, so it’s really good for you.
I don’t know what supplements you’re taking, but I would definitely say: Probiotics, Vitamin D, and fish oil!
Also, I take digestive enzymes before I eat, and that helps a ton! I take Garden of Life Probiotics – Primal Defense (and I know that it is not SCD legal) and I take Garden of Life Omega-Zyme digestive enzymes (don’t know if that is SCD legal or not).
Happy Suck-It UC day!
Hugs from Minnesota,
P.S. Col, I am glad that you’re still eating lots!!! LOL!!!
P.P.S.S. Kyle… you are from Washington State?!?!??!?!? They are voting very soon, I think, on the labeling of Genetically Modified Foods… I am PRO-labeling, obviously… if you are too, please vote!!! :)
Holy Smokes! Sounds like what you are doing is way more intense than the SCD : ) Thanks so much for taking the time to comment and give me your thoughts and ideas. I hope to keep in touch with you. Thanks again!
Hi Kyle, having a supporting partner in eating SCD is key I think. It’s hard to watch other’s eat fast food or yummy desserts right in front of you.
Have you had Butternut Squash Fries??? If you haven’t they are so good and you won’t feel like your missing out on potatoes if you pair that with a hamburger covered in pickles and mustard with onions and all the good veggie toppings. Also my mom made buns for me using cottage cheese !?! That would be a great addition to the burger.
I do eat lots of bananas too. I also buy Almond Flour to make little muffins from a super easy recipe and if you have those, you don’t feel like your without bread at all.
If you eat out, ask for a gluten free menu. Many restaurants like the Olive Garden, O’Charly’s, Elephant bar have them and that will help you eliminate wheat, I usually bring my own dressing with me to eat out – some of Annie’s Dressing is made with honey and gluten free. I order water with lemon and it tastes fine to me.
I don’t think it’s a hard diet to follow, it just takes more time and you need to plan ahead if you’re used to eating quick service type meals or snack foods.
Adventure – Thanks so much. I am back on the intro diet now as my symptoms have returned. They have not came back viciously but I am experiencing the D, cramping and weight loss. I am hoping to be able to kick this based on the diet only but do have some back up steroids, Uceris, just in case. I am really hoping not to have to go the med route and be able to kick UC in the face SCD style but we will see in time. I am starting my new job on Wednesday, so I would like to have things some what under control by then. : ) We will see, God’s got me under control and we’ll be good! Hope you have a great Sunday!