Quick background on Lauren:
I am a jack of all trades. I am addicted to trying new things and constantly adding new skills to my toolbelt. I enjoy creating textile art, hunting for mushrooms on a hike, solving difficult engineering problems, singing and dancing, and everything in between. There is so much worth experiencing in this crazy life.
Current Colitis Symptoms:
I am currently in the middle of a mild flare. I have pain mostly on my left side, using the restroom about 3-4 times per day. There is some blood in my stool and excess gas.
Lauren’s Story:
My name is Lauren and I was diagnosed with moderate – severe left sided, Ulcerative Colitis about 10 years ago. It has been one heck of a journey. Receiving the diagnosis at the start of my college career, I felt overwhelmed and defeated. “Why is this happening to me?” “Isn’t this something I should be dealing with much later in life?” “Am I being punished for something?” Are questions that frequently ran through my head, especially being one of the younger patients sitting in the waiting room to see the gastroenterologist. At this point in my life I was consumed with a demanding engineering program, work, maintaining relationships, and prioritizing my health in some way. I wanted whatever the doctor could offer that would make me “normal” again.
I went on and off mesalamine and sulfasalazine oral and rectal medications for several years, with bouts of steroids to control the really intense flare ups. I had a few wonderful periods of time in remission without the use of any medications, my doctors would always get upset when I stopped taking my meds. I’ve tried every diet in existence it felt like, vegan, vegetarian, high carb, keto, fasting, but nothing ever seemed to work long term.
I heard about the Selective Carb Diet reading Adam’s book and Breaking the Vicious Cycle by Elaine Gottschall was a resource that frequently came up, but I never took the time to delve into this diet. I think I was dieted out, I had already tried all of these other diets that people swear by and they didn’t work, so what would make this experience any different?
In November of 2022 after having a life-threatening flare up, I’ve had close calls before but I really believed this disease was going to take me this time, so I decided to give the SCD elimination diet a fair shot. At this point my body was no longer responding to mesalamine or sulfasalazine (I actually felt worse taking these drugs) and my gastro doctor wanted to progress my treatment to biological injections. This is something I personally wanted to avoid! I have been disciplined and patient advancing through each of the stages of this diet, allowing my body proper time to heal itself. I’m currently not on any medications, finding ways to manage mild flares, and preventing full blown flare ups. I decided to document this journey as a video diary on my YouTube channel, Sangre de Buja (https://www.youtube.com/@BrujadeSangre), to show the raw progress that I’m making and help give others a realistic view of how this diet may also help them.
I believe there are many pieces that need to come together in order to heal from diseases (environment, diet, mental health, stress management, etc.) as opposed to only taking medication and thinking this is the end all be all. My goal is to encourage others to incorporate alternative healing methods, know there are other options available to them, and do their own research because health is so specific to each body. Please join me on my journey (https://www.youtube.com/@BrujadeSangre) experimenting with alternative healing methods, I’ll be sharing everything I’m testing on myself from food to biohacking tricks!
Question to Everyone:
One thing I forgot to include was asking fellow UCers that are currently managing their UC solely with diet, what tips and tricks they have for getting out of a flare?
written by Lauren B
Submitted in the Colitis Venting Area
My name is Lauren. I am a learner and a maverick who is passionate about the medicinal properties of plants and food. I am currently transitioning from the tech industry to the agricultural realm with a mission to provide easy access to healthy food to the underprivileged people in my community.
When I was true to the SCD diet, my UC symptoms stopped. I quit it because I just burned out on the few recipes I could fix with grain replacements ie: almond flour and I am allergic to potatoes so the grain-free flours were out. My husband does not eat vegetables and it was a struggle to do two separate meal plans and I work full time . I also have RA and am so scared of all the meds they put me on, though, that I am ready to go back to the SCD diet and see if it helps both UC and RA. Thanks for sharing your story.
Kris, thank you for your reply! The diet feels harder than dealing with the UC sometimes. Very few recipes in the beginning, making everything by hand, taking your food everywhere with you. Taking care of yourself becomes another full time job. I hope you find time to try again, I would love to hear about your future progress!
Good luck on your great success getting off of the meds. I take 4 lialda once a day and eat paleo. No symptoms. I’ve tried to reduce the meds and by the end of the day I start cramping and know if I don’t get the pill in me I’m gonna have blood in the stool next.
Thank you so much Lori! I remember having success with Lialda specifically in the past. How has the paleo diet been?
I definitely feel better on paleo. I was hopeful it would help me at least reduce lialda to 2 with no luck. I have to take brand name lialda. I used generic for years and something changed in the medication. I contacted the manufacturer and the have a program, Takeda help at hand and able to get it at no cost.
Hi Lauren,
Looking forward to seeing your YouTube video. I currently am pretty much symptom-free. I manage (like Lori) with 4 tablets of Lialda daily. I am a mild to Moderate UC’er. From time to time I get mild flare-ups due to poor diet choices. Alcohol (I believe) is a strict no-no, btw. But there can be other triggers, such as cookies, chocolate. I once was able to trim my lialda down to 3 tablets, but when i tried alternating days with 2, then with 3, I flared up. After that I decided to just stay on 4. I also switched to generic brand with no ill side effects or problems for those of you that might be in a similar insurance issue. Wishing all of you UC’ers healthy and hearty poops. -Thomas
Thank you for your reply Thomas! Lialda is one of the more mild medications? I feel like my body is rejecting things. I definitely can’t do alcohol, table sugar, starch, grains, even medicinal cannabis started making me feel weird. God wants me sober and med free I guess :)
Hey there Lauren,
Thanks for taking time to share your story. It’s a different story for everyone there is no doubt.
I was diagnosed with UC ( early stage) nearly 7 years ago. Luckily I am med free possibly 6 years. It’s an ongoing life practice to subdue it.
Brain and gut are connected, we cannot underestimate the physical influence of personal stress and unease , buried traumas and ongoing reflex responses. Addressing stress, noticing life events patterns along with physically sensing the early stage flare can help bring in mental practices ( eg . and physical : walking, yoga, swimming) of not spiralling into repetitive thoughts , (possibly from triggers of stress, internal or external, ) which then can subdue inflammation. This is an ongoing life skill ( the personal advocate one ) that has to be incorporated permanently.
Creating and maintaining boundaries with people that suck your energy is very effective.
The SPD diet is a great outline to use in conjunction with personal adaptations to it.
I really think we need to use our intuition and common sense , and with all of the above being med free or using occasionally using it may not be just a dream.
Of course there may be different versions of UC cause , this has been my personal experience and I have a best friend who has had his large intestine removed due to UC and we look at the personality type and life response type a lot.
Best wishes, and may health be with you.
Trish
Thank you so much for sharing Trish! I agree with you and I’m glad you’ve found relief from incorporating these changes that are definitely not mentioned during a gastro visit. If I don’t do yoga or set my self up for success, my progress takes two steps back it feels. I’m still learning the best self care routine for me.
It’s actually good to give feedback to gastro doctors & nurses on the non traditional med approaches. They are usually supportive I find. It helps open their minds too for the patients.
Win win .
Just to add Lauren, I had mentioned the SCD is helpful, I use it only as an outline really as there are many things on it that do not suit my gut eg. Kefir, general dairy unless it’s hard cheese, soya, vodka, citric foods,pork, … to name only a few. A lot of uncooked raw food or juices are very aggravating for me.
So my way of finding what suits my gut and metabolism is to use a kiniesiologist occasionally. I had amazing results within a 2 week period the first time I went.
They can figure foods to include or eliminate in a one hour session. You don’t need to completely eliminate long term as the body adapts. Anyway it’s another tool to look at if you are so inclined .
The very best of good health & happiness to you
& all here with this challenge that is UC.
Trish
The breaking the vicious cycle diet is simple an hardcore paleo diet. To be clear for me it will work for everyone how has UC, why? Because the secret is only to remove every sugar. When I start this diet it was in august 2015, I knew from bottom of my heart that was the key I don’t know why. I never ever cheat with this diet and the first result appear only 6 months after I started the diet. I know lot of people Would have given up because is too long. But today I have no more symptom and now more meds since september 2015!. My only msg here for every people who has UC is to buy the book breaking the vicious cycle and take the SCD diet without zero cheat.
Thank you so much for sharing! I know everyone’s experience with the diet is different. I also truly believe this is the best way! I’m good about not cheating with foods outside of the diet, but from time to time I cheat with more advanced foods :(. Really great to hear a realistic time frame of 6 months. I’m not giving up!
God bless you I know you will find a good way to fully beat this UC!
Dear Lauren
I was diagnosed in my 20s (21 years ago!) and I can’t believe I’ve lived with this disease for such a long time. The SCD worked great for myself for a while and I believe the 24hr fermented yogurt was the best part of it. I was on asacol for many years and it worked great. Then my doctor put me on biologic meds which have been awful. Nothing but side effects including alopecia and anaphylactic shock. I am currently on Stelara which isn’t doing much but am trying a low sulfur diet. When I stick to it, it’s like I never had UC and symptoms instantly stop. But it’s a very challenging diet. Constantly looking up levels in every food! I am also on waiting list for the surgery. I was so very sick during covid lockdowns and don’t ever want to be that way again.
I really hope you find the right balance and gain remission. I think it could help many others feel more positive about their futures. Good luck.
Your story is right on time for me . I stopped all Rx because 2 yrs of Remicade
caused me to have Lupus . So now I’m DETERMINED to control flares thru diet . Just came out of a wonderful 6 mo remission , I believe personal stress is to blame. Exasperated, went to get steroid injection just yesterday . Things I know work for me are Pre & Pro biotics ( I take the Rae brand ) , Adam from I have UC’s water kefir recipe, 24 hr yogurt , ELIMINATING gluten & lactose 100%, eating an almost entirely plant based diet, I take a steady protocol of Cymbiotika supplements b6 B12 magnesium C zinc folate D , and iron ; I also add spirulina , collagen peptides , chia , flax , pumpkin seed oil . And when I’m needing boost I also take a bit of Shllajiit. My main smoothie recipe is Carnation instant breakfast w peanut powder protein & almond milk to which I add a mix of berries & spinach & kale. It sounds like a lot , but I can do all of this with my eyes closed now …it’s my daily routine that I developed and researched and what I know makes me feel good. I also make sure to drink a ton of water that I enhance with DripDrop brand electrolytes.
Well done Lauren you’re on the right track , after 10 years of the drugs merry go round I decided there must be another way . So I quit all medication and went for high fibre low carb diet and take a daily stool softener . Over 3 years later I’m free of bleeding and flairs , it takes time to consider what you’re eating but as they say , you are what you eat . There is another way it’s just finding what works for you .
Hello Lauren, thank you for sharing your story. I also wonder how people who manage with diets can tackle a flare. I’ve been doing SCD for about 5 years while taking Asacol HD. (And had done the Rowasa , canasa and uceris for flares. Whenever I “cheat” with either potatos or rice then a flare usually comes which honestly is so tough because I would love to just eat a potato! But like you I really don’t want any heavy duty meds like biologics so I just do the diet and actually tried weaning myself off the oral meds but so far couldn’t quite do yet. So I keep chugging along.
I was diagnosed with ulcerative colitis with my very first colonoscopy at the age of about 57. I had no symptoms of colitis what so ever until I had the scope. It was downhill from that day forward. Prednisone for flare ups, then finally on a nightly suppository of mesalamine. I didn’t take the dose of four large pills daily of mesalamine because I did fine with just the suppositories. Did the suppositories every night for a full year. Finally after 10 years of dealing with everything, I thought it’s time for another colonoscopy. As much as I dreaded it I knew it was time. I should mention this, the most important part, I changed my diet to fruit and juicing. I would do up to three weeks at a time of nothing but juice. Then I’d eat carefully things I knew I would do fine with. Then a couple months later I’d do another 2 weeks of juicing and fruit. I’d eat as much fruit as I wanted, especially during the summer. My favorite being watermelons, cantaloupe, peaches, and the best, mangoes, the large green mangoes I’d order by the case from sprouts. Well, my blood tests were coming back perfect, then the truth was my colonoscopy. It was the cleanest colon my Dr. said he’s seen in a long, long time!! No sign at all of colitis!!! I know it’s just a remission. But he said no more suppositories and he’ll see me in 10 years for the next colonoscopy. Alrighty then! I’ll stick with my mostly fruit diet and stay away from caffeine, deep fried foods, sweets, which is really hard for me, and processed garbage food. I’m now able to enjoy a salad now and then. I stick with fruit, juicing and mostly raw diet. Rarely ever eat meat, but once in a while I want a burger and I’ll have it. I consider myself extremely lucky. I’m going to enjoy this life while I can. I pray it doesn’t return.
“UC began after first colonoscopy”… really caught my eye ! Think about it…a gallon of PEG to clean the bowel, wiping out billions of microbiota that were critical to a healthy immune system and digestive processes.
I wonder how many people share that history as the genesis of their experience with this terrible disease began.
My 15 year history with UC( since 2008 ) began that way and progressed to pancolitis,
c-diff, 16 bm’s/day, SCD, through all the meds except biologics , to finally some control with mercaptopurine 2yrs ago and some remission this past year.
Not a pleasant journey but thanks to a great
and patient doctor at the VA and a wife that showed remarkable skill in coping with bowel emergencies (even on road trips! ) , most of that is behind us ! (pun intended)
DJ
Telling this to the nurse who did my IV before the happy juice was shocked. He mentioned something happening during the colonoscopy that would cause this rare problem. I was tested for c-diff and all kinds of different things as well. thank god it all came back negative. I wonder how many other people end up with colitis or problems after a colonoscopy. Hmmmm
My sx of colitis started after a colonoscopy. Colonoscopy showed no problems . Unfortunately my brother had colon cancer, mom diverticulitis, nephew colitis…..this places my family in a high risk pool.
I was misdiagnosed in the beginning,, so I was given a bunch of antibiotics because they thought I probably had an infection. I was naïve and uninformed until I got much sicker and ended up in the hospital for 3 separate thirty days inpatient.
Five years after the colitis started, it was out of control. I was diagnosed with severe pancolitis. I did have surgery to remove my large intestine and five years after that, I now have a J pouch.
I tried every medication and the SCD.
I wish I had been more informed at the very beginning, and had recognized that I needed to do everything to halt the progression of colitis. I think I would have had a better outcome.
I wish everybody a long and healthy life.
I am in my 70’s and have had IBD and Celiac my whole life. I was first diagnosed with Crohn’s for many years. Then I was diagnosed as Crohn’s/ Colitis for about a decade. Then a new gastro doc decided to change my diagnosis to just UC. I have had my share of bad flares and been on several meds. Lots of prednisone for many years caused a lot of damage to my body, and eventually didn’t help with flares any more. Asacol worked for years, but switched to Balsalazide Disodium for cost reasons. I finally found an anti-inflammatory diet called IBD-AID out of U Mass that has worked well for me, along with VSL 3 probiotic. Anyone who finds SCD too hard or restrictive should check out IBD-AID. I don’t eat any gluten ,alcohol, red meat, any sugar (except some fruit) , dairy, or processed foods. I have been in remission now for about 5 years and feel good most of the time. Proper sleep, exercise , and meditation have also been key. Good luck in your journey to better health.
Hey Lauren,
Thank you for sharing your story. I’m sorry that your journey has been so long and exhausting. I’ve been on the SCD diet for 15+ years now and believe it has made a tremendous difference in my life. The other thing that makes a huge difference for me is the stress level. Major life changes both good and bad have been debilitating at times for me. I’m trying to practice more meditation, deep breathing, and prayer when those times come around now. The lock down of Covid was horrible and my symptoms were erratic for over a year. Once things started calming down, so did my symptoms.
I admit the SCD can be limiting, but I’ve learned to make adjustments to old favorites with sometimes great results! At times when I’m symptom free, I find I have more freedom and can tolerate a few sweet potato fries, a piece of breaded fish, or some rice with my meal. I love the homemade yogurt and make it regularly. It’s a great snack or quick meal with some fruit and a scoop of nut or peanut butter and a few coconut flakes.
It can be time consuming and a hassle at times, but I remind myself that feeling good and being able to travel, and take part in so many activities is the best gift I can give myself, even it takes work.
Good luck to you!
I was originally diagnosed with mild colitis in 2015 but it progressed from there. I was not eating well and had a lot of stress in my life. I made a lot of changes and it was a journey. As soon as I was diagnosed I went to see a Naturopath and looked for alternate ways to help. I was given Salofalk enemas in the beginning but it never made sense to me. You insert it and then you have to go to the bathroom all the time so I stopped. I was prescribed meds (Salofalk) and my Naturopath and I looked at the side effects and decided that my symptoms were less so I didn’t take the meds. I used diet and supplements. I found the biggest thing is inflammatory oils. I only use coconut, avocado & olive oils, beef tallow, ghee, pork lard and butter. I don’t use the butter and olive oils for high temps as they don’t have a low smoke point. This was a game-changer for me. I started to eat an anti-inflammatory diet which is basically whole foods and I tried to stay away from processed foods. I am now eating a mostly whole food ketogenic diet and I have been symptom free for over 4 years. My GI doctor doesn’t know what to do with me because she is used to patients getting worse. I tried an essential oils protocol and I found that was helpful. I’ve had my stool tested through Viome which was interesting and they give you a specific food list and supplement just for you. I have made changes in my life to do with work and stress. I have been walking 10K steps daily and feel much better. Working from home has helped. I find that I do better eating better quality meat and veggies, but too much fiber is not good for me. I gave up drinking alcohol a long time ago that was a big trigger for me. I don’t eat much gluten or grains. I am healing but it takes time.