Where do I begin? This journey started in October of 2004 when up until then I was a ‘normal’ teenage boy, going to grade 12 and playing as many sports as possible at school. I was the captain of both the volleyball team and the local A level hockey team. I was active all the time with practices 4 times a week, 2 hockey games and one volleyball tournament every weekend. That was the normal schedule from September to December when volleyball would end and then it was only hockey for sports that were outside of school time. This all changed though when shortly after Thanksgiving, which in Canada is the 2nd Monday of October, I started to have, as I know now, Ulcerative Colitis (UC) symptoms. These symptoms occurred for more than two months until I could no longer bare them and approached my mother (a 25-year nurse currently working in emergency) with the problems I was having. I am not sure why it took me so long to tell her about it, likely because the symptoms of UC and Crohn’s or other inflammatory bowel diseases are not flattering. For those people that don’t know the symptoms I will let you research them but the most common are intense bowel pains, cramping and bloody stool should the disease progress that far as well as always feeling the need to go to the washroom . So it is December of 2004, I have just informed my mom about my symptoms and she immediately takes me into emergency where I have no wait time due to how I look/feel and the doctor sees me right away. I have blood tests done and a scope (and not one that any person would enjoy) and they take biopsies of my large intestine.
The results come back and I am informed that I have Ulcerative Colitis and now need to start a major regimen of drugs, Prednisone mainly; and also Flagyl (metronidazole) and Cipro (ciprofloxacin). This ensued for the next 13 months. I ended up adding Imuran (azathioprine) to this deadly cocktail of drugs that were supposed to cure me, which takes 3 months of ingestion before it even starts to work. Needless to say a year later I was tired, out of shape, weak, cranky and fat due to the prednisone (my normal weight was a fit and lean 170 lbs., I was now 190 lbs. and not a lot of muscle). The side effects (or effects because you will get them) of these drugs are absolutely awful and I do not wish it upon anyone to be on them, here are a few of the main side effects: Prednisone – increased blood sugar, mood swings, weight gain, loss of thought, facial swelling, depression, fatigue, osteoporosis, severe join pain, anxiety; Flagyl – nausea, and diarrhea, also cannot consume alcohol while on it; Cipro – can have major side effects up to peripheral neuropathy, tendonitis and liver failure. As you can see the side effects of these drugs are nothing to laugh at and nothing that anyone should ever want to be on when there are other options such as the Paleo diet, but I’ll get there later. Needless to say I was unhappy and none of these drugs were making a difference, I was only getting worse. That Christmas after finishing my first semester of a Bachelor of Engineering from the University of Alberta in Edmonton, AB, Canada, I developed pneumonia and therefore this was not the best holiday. At this time my family and I decided to start looking into alternatives to the western way of dealing with IBD. I would like to stress that people should do some research on western medicine and how we “cure” people of diseases/syndromes. I say this because western medicine isn’t designed to cure IBD, it is designed to only treat it by having you ingest medications for extended periods of time, and this process only keeps repeating itself. Anyway, we started researching natural path remedies and possible diet changes. It’s at this time that I WISH I would have found Paleo but alas this was not to be the case. I went back to school for the 2nd semester and my mom decided to tag along with me for the first couple weeks to help deal with changing my diet to what we thought would help from reading on natural path diets. I am not sure exactly what that diet was but I know that it included no dairy and cutting out wheat however it didn’t last long. The 3rd day into the semester was one of the worst days in my whole life and my mom decided to take me to the emergency again, thank God for her being with me at that time, because I am sure I would have been too stubborn or embarrassed to go.
This trip to the hospital was even more eventful and one of the last few times that I would go to a hospital again. I walked in, was so dehydrated that I was sent right into the back and hooked up to an IV to get fluids in me. The blood tests followed along with another scope. This time the results were even worse. My WHOLE large intestine had deteriorated to the point where it could not be saved, the hospital booked a room for me, the doctor came in and told me I could go on a new drug they were testing but most likely I would have to have my large intestine removed anyway as he figured I was months away from contracting Bowel Cancer, therefore my surgery date was set for 15 days later. These 15 days were some of the hardest times I’ve had to endure; I was not allowed to eat as they were prepping my bowels for the surgery, therefore I felt I was starving even though I was getting ‘sufficient’ nutrients through IV. I lost a massive amount of weight in that short period of time due to not being able to eat and the 20+ bowel movements I was having a day. My pre-hospital weight was between 180-190 lbs. and after I left the hospital which was a 21 day stint including the recovery time from the surgery I was a mere 130 lbs., a weight I had not been since I was 14. The surgery is called the J-pouch surgery or ileoanal reservoir total colectomy; it’s an intense surgery performed in 2 parts. The first is to remove the whole large bowel; the small intestine is then divided into 2 parts with the lower part formed into a pouch (J-pouch) with a volume of approximately 1 cup, the higher portion is protruded outside of the body where they attach an ileostomy bag. I had to live this way for 4 months while the lower portion of the small intestine (J-pouch) healed, I then had a second surgery to ‘reverse’ the ileostomy and hook the small intestine back together. Needless to say I dropped out of university for that semester but was determined to not let this disease get the best of me. I headed back to university the following September and completed my Mechanical Engineering degree in May of 2009.
At this point they call you ‘cured’ from ulcerative colitis. This may be true as you no longer have a large bowel for the disease to attack but you are anything but normal or ‘cured’. You need to learn how to control bowel movements again and adjust to having 6-8 movements a day due to there not being anymore storage capacity. Although this may sound horrible, compared to the horrific pain of living with UC and all the side effects of the drug cocktail that I was on; this felt like and still does feel like freedom. I was and am medication free.
So you may be asking yourself how does this fit in with the Paleo diet or where am I getting to. Well I lived like this from June 2006 until June 2011 with little to no symptoms of colitis. As you may not know, after you have the surgery you can develop what is called “pouchitis” which essentially is colitis of the J-pouch, it has all the same symptoms as Ulcerative Colitis. I had a few bouts of pouchitis over the 5 years and every time was back on cipro and flagyl for 3 weeks and this cleared it up. Other than that I ‘seemed’ to be able to eat and drink what I wanted without consequence or so I told myself. In June of 2011 I became sick again with another bout of pouchitis and this time it was worse than all the others, I had full blown colitis symptoms. I went to the doctor and was put on Cipro and a different form of flagyl as the last time I had an adverse reaction to it. The regime was supposed to be for 3 weeks and this would again ‘cure’ me. This was when I found PALEO. I had been on the drugs for 5 days and nothing was getting better, if anything I was getting worse, and I was getting depressed as I had seen this all before. The medications quit working and I have no more intestines to lose, should the meds not work the doctors will want to set me with an ileostomy bag for life. At this point I turned to one of my best friends who, until now, I thought was crazy for the type of eating habits he maintained; he told me he had Celiac’s disease and was also lactose intolerant (I think this was just his way of not having to explain Paleo to everyone). I turned to him, I was done with the meds and decided to take myself off of them as they were not making me healthier and the side effects were only making things worse.
It was that fateful day of June 26, 2011 that I was introduced to the Paleo diet and lifestyle. I had my meeting with him in the afternoon; he is a trainer at a local gym and an ex-crossfit athlete. He told me about the diet, what to avoid and what to eat, what supplements to start taking (Vit D and Omega-3). Some of this was not new to me as I had dabbled with taking out dairy and bread before but never to this extent and never legumes or sugar. I left the gym with a printout of the FAQ of Robb’s site, the quick start guide and the grocery list; as soon as I got home I bought the book. That night I cooked my first Paleo meal and have never looked back.
After 5 days of Paleo eating I was SYMPTOM FREE!!! I thought that this had to be a miracle. A few days of eating healthy and all my pain and symptoms were gone. Needless to say I started wondering what would have happened if I had found this diet 6 years before, maybe I would still have all my organs but I am not one to droll on the past but look to the future and that is why I am writing this article. I want to help those who are having IBD symptoms or have been diagnose with Crohn’s disease or colitis.
This lifestyle (I don’t want to call it a diet as that seems like a fad and this is for life) will help you. I have been living the Paleo lifestyle now for 7 months and have never felt better. I have toned down and started building muscle with the workout regime I’m on; I am playing several different sports at this time, have more energy than I know what to do with and am very productive at work. No longer do I get the 2 o’clock slump in my work day. I have no symptoms of ulcerative colitis anymore and NO PAIN, which for me is something that I have not felt for 7 years.
My suggestion for people that have IBD or those that have been diagnosed with Crohn’s or colitis would be to read the quick start guide that Robb has provided. Immediately get off of all grains, dairy, legumes and sugar. Start the Paleo diet, get the book and read it, don’t skim any sections actually read the whole book and understand the science and truth behind this diet and why it works; and why the diet that is pushed to us through our health and medical systems does not work. Trust me; you do not want to go through the drug cocktail and side effects that I did which don’t work anyways. Start this lifestyle and you can live medication free, be healthier and more fit than you ever have, live life to the fullest. There is nothing to lose other than the terrible pain that IBD causes. I know there can be hesitation to give up the grains and sugars you like so much (are addicted to) but stick it out for 30 days without cheating and I guarantee you will see results in your symptoms and how you feel.
If anyone has any other questions on what life is like living with Ulcerative Colitis or what it is like after having the surgery, please feel free to ask.
As a side note my parents and sister are on this as well and have been for about 5 months with great results. My mom and sister also suffered from IBD symptoms for their whole lives without any success of controlling it with medication. They all now feel so much healthier, they have no symptoms, my dad has lost 35 lbs. so far; they all agree that they have way more energy.
I would personally like to thank Robb Wolf for his research and guidance with this topic. Without him I would be on so many meds and so unhealthy, I don’t even want to think about what life would be like.
– Miles Miller
Awesome story, Miles! It’s scary, reading your story, how many lines read just like my story. I was never as bad as you, and never officially diagnosed with UC. But I did have a long battle with IBS and problems only got worse when I was in college. I, too, graduated with my degree in Mechanical Engineering (about a year before you). But the most important similarity is how much better we feel living Paleo!
Keep the word out there, and hope the rest of the intelligent world catches on. Until then, you’re an inspiration to those who need help now. Thanks for sharing!
I was also diagnosed with UC and took the prescribed medicines for 3 years, then as the drugs were not helping, the doctor said I needed to schedule another colonoscopy to see the damage to the colon. Thank God it was right then when I found the books The Primal Blueprint and then The Paleo Solution. After a month of being primal/paleo, I canceled my colonoscopy and have not been back to see the doctor. That was one year ago. I haven’t felt this good in years.
Thank you for sharing your story.
Hey JC, was wondering how u are doing with ur Paleo lifestyle? Any problems with ur UC since?
Thanks for sharing =)
you really do need to have regular colonoscopies if you’ve been diagnosed with UC even if you’re in clinical remission. Your elevated cancer risk doesn’t go away just because you’re in remission.
Actually it does. While the calculated risk may stay the same based on the diagnosis itself, the chronic inflammation and subsequent damage to the tissues is what increases the risk of cancer. When you remove the inflammation, you reduce the risk back to that of a population without IBD. Beyond that, this young man’s story sounds like his IBD was probably a hereditary issue with gluten and or lactose reaction. An immune response to allergen (or general aggravants) will mimic IBD. So, it eating paleo cures the condition, then what are we really looking at? Immune response. Remove the trigger, remove the response, restore the lining of the colon, and your risk returns to normal.
You can’t have a colonoscopy if you don’t have a colon…
Congratulations, Miles! It sounds like you have gone through a horrific journey. I’d like to add one other book/web site for people with IBD: “Breaking The Vicious Cycle” by Elaine Gottschall (breakingtheviciouscycle.info). Gottschall created what is basically a Paleo diet called The Specific Carbohydrate Diet (TM) where she clearly identifies “legal” and “illegal” foods for people with UC and IBD. (Anyone following a Paleo diet will find the list quite familiar!). But the best part is that there is a large online community available for IBD/UC sufferers.
Best of luck to you, Miles, and thanks for your inspiration!
Thank you! “Breaking the Vicious Cycle” saved my life when I had a severe flare of UC and no health insurance!
UC is a nasty, awful condition for sure! I’m so sorry you suffered through so much with it, but what an amazing story about the healing properties of a paleo diet!
Thanks for the support everyone. It’s been a hard battle that’s forsure, but without this battle I would not have found Paleo nor would I be able to share my story with everyone. I am far and away a better person from living through all this and my goal now is to share my experiences and help people so that they do not have to suffer from IBD anymore.
Miles, your story is equal parts heartbreaking and inspiring. I’m so glad you found Paleo. It’s unfortunate that you found it *after* experiencing this whirlwind of medical procedures that must have been as tough on you psychologically as they were physically.
Stories like yours make me want to take uninformed medical professionals and slap them upside the head. It’s an absolute travesty that the vast majority of them are so ignorant of the power of REAL FOODS that they would sooner recommend pretty much the complete removal of half a young man’s GI tract than suggesting he change his diet.
We “converts” have to be careful not to proselytize to everyone we meet, but I sincerely hope you won’t be afraid to speak up if/when you come across other people suffering from IBD and related conditions. This information NEEDS to get out there. Your story is amazing. Never doubt that you can give other people hope and literally save their lives. Robb and his crew do it every day! 🙂
Thanks for sharing Miles. Sounds like you’ve been through hell and back in your prime. Congrats on the amazing recovery! Your example and others like it will go along way in helping others see there is hope.
Hi, Isuffer from UC and IBS. Which book would you reccomend to follow, looks like there are several. I am interested in this very much.
Thanks and Happy Holidays
Chris read Robb’s book and start to follow the diet to a tee, for at least 30 days if not longer. Only once your symptoms are gone should you try and bring things such as butter and cream back into your diet. Read Robb’s book “The Paleo Solution” follow it and see the results. Should you have any other questions regarding living/training/playing sports with UC you can ask me anything. Hope this helps and keep us updated on your progress.
Miles
Hi Miles,my name is Aurora I just read your story and I cried, I have a daughter who was diagnosed wit UC a little more than a year ago she’s on a few medications too I would love to have a chance to talk to you and may be you can guide me in a better direction so that I can help her. Thank you so much
Thanks Miles for sharing this. I have Ulcerative Colitis as well since last February and I was lucky enough to discover the Paleo diet from the start. Because my first flare up was very severe and affecting the whole Colon, i’ve been given Prednisone and Azathioprine. I’m now symptom free, but still on Azathioprine. I would like to know how you did to get off medication. My gastroenterologist told me that it is dangerous to stop medication, as it can trigger another flare up. I would like to be able to do it safely. Can you please share your experience?
Thanks.
Miles, I’d also love your thoughts on Adeline’s question. I have Crohn’s and am symptom free on Paleo, but am still on Azathioprine. Same reaction from my doctors, and I’d obviously love to get off of the stuff in a safe way!
Hi Stephanie and Adeline Glad to hear that you guys are living symptom free and personally i would attribute that to the diet more so than the medication. As for trying to get yourself off the medication i do not know if your Gastro will ever tell you to go off of it, you are most likely going to have to do this by yourself without his/her approval. My suggestion would be to slowly reduce the intake of medication of a couple months. you will most likely need to buy a pill cutter so that you can take half and quarter pills towards the end, but this is much similar to how you need to come of Prednisone if you have been on it for a long time. Again, this is just my suggestion, I am not a physician and if you feel that you want to live medication free I would tell your doctor that, and work your way off it. If you start having symptoms again (I doubt you will) then I would consult your doctor again about going back on. best of luck to you both and hope that you can live a happy healthy medication free life!!
Miles
Hi Miles.
I have been flirting with Paleo the last few weeks and have found it easier than I expected. I was halfway to it prior to this as I have Fructose malabsorption so had to avoid wheat anyway. I’m loving the lifestyle and will do the 30 day challenge from Jan 1(over Christmas is really not an ideal way to commence).
Enjoying this as much as I do ,I have been gently trying to prod my brother to investigate this to help him with his Indeterminate inflammatory bowel disease. He went through a very traumatic initiation to this disease a few years ago which culminated in an emergency’ life threatening surgery for a total colectomy. He spent a very long time in ICU, his weight dropped to103 pounds(he is 6 ft 6in) and looked like a prisoner of war. Couldn’t go from a sit to stand without help.
He is still struggling with this condition and it has been joined by a thyroid problem(can’t remember which one) and maybe ankyLosing spondylitis…he is having so much fun.
I am going to share your story with him as one of my dearest wishes is for him to be happy, healthy and living life to it’s fullest.
Thankyou for sharing
Tam
Miles,
Thank you so much for sharing your story. It has given me hope! I have had Crohn’s disease for 16+ years with multiple surgeries and the last one resulted in a temporary colostomy. I have been symptom free since that surgery and am looking for ways to remain that way without medication as I can’t tolerate the side effects. I am just learning about the Paleo diet and am hoping it will be as wonderful for me as it has been for you.
Thanks again for the inspiration–reading your story brought tears to my eyes as I can totally relate to everything you have gone through. And it further validates what I’ve always thought and believed, which is that diet is a huge part of this disease.
Hope you enjoy continued good health!
Carolyn
Thanks Carolyn, it was a tough journey for sure but without that journey I would not be who I am today, I dont feel sorry for myself I look at this as a way to try and help people from having to go through what i did. Please send an update on how you are doing with the Paleo diet, I have a feeling that you will start to feel good right away.
Happy New Year!
Miles
Hi Miles, my story is similar to yours, but my journey took place over the last 25 years. I was diagnosed at age 25 with UC, treated with medication(lots of side effects). At age 40, had my colon removed, but had a pull through, so no ileostmy. I had colon cancer, went through chemotherapy, did fine. 4 years later, had my rectum removed, had rectal cancer, more chemotherapy, & 6 weeks of radiation. Had the ileostmy for 5 months, my J- pouch survived the radiation.
Was put back together, but took about a year to feel OK. I am now 50! About 2 years ago, I started running, lost 25lbs and feel great. I have been working with a cross fit trainer for the past 4 months & she told me about the Paleo solution. I have not gotten into the Paleo lifestyle yet, but am going to start the new year with trying it.
I am a member of CCFA(Crohn’s & colitis foundation): you should check out this great organization.
Thanks for sharing your story.
All the best, Mark
Hey Mark, I feel for you. That’s a long time to be battling this disease and to keep having issues. Glad to hear that you have survived cancer twice!! As for the Paleo diet I would highly recommend that you take it 100% for the first bit and get yourself turned around and feeling well! Hope it works out and we are all here if you need help and support. As for the CCFA, I live in Canada and am a member of the CCFC, I am on the board of my local chapter and working with them to starting putting research dollars into discovering the CAUSE and not a “CURE”, because if you find the cause and eliminate the cause there is no need to a ‘cure’ in pill form. Not good for pharma company revenue but much better for the rest of us.
Miles,
Thank you so much for sharing your story. My daughter was diagnosed with UC a few days before her 12th birthday and within a few days before her 13th birthday she had gone through all you had gone through and an additional 2 surgeries as her first j-pouch died and they ended up having to make a straight pull through instead. She has been “cured” and medication free for a year now, she just turned 14. Before all this happened we were just getting into Crossfit and learning about Paleo, but our entire lives were thrown off track and for the last year we have been eating terribly as the nutritionist insist that she needs white rice and regular pasta etc. in her diet to help “glob” everything together.
I am so tired of eating like this and feeding her foods that I feel are hurting her health. I have gained the weight I had lost eating paleo, but more important I want us all to be as healthy as possible and teach her a good nutrition foundation that I hope she will use in her life.
I am cleaning out the cupboards and going to fill up house with paleo friendly foods and see how her body reacts. We were told she needed to eat more white carbohydrates, because this thickens the pouch output and reduces the risk of dehydration. Any Paleo friendly foods that you have found to help with this?
Thank you for your time.
KG,
Sorry to hear about your daughter. It is such a brutal situation to be in, and a person feels so helpless and does not know why they all of sudden go from “normal” to dealthy ill overnight. Glad to hear she is doing better and medication free.
As for foods that help “thicken”, I wouldnt say i’ve found one certain food yet, still somewhat searching for that, haven’t played around with good carbs (sweet potatoes) too much though, but that may help. What I can tell you is that when I eat pure Paleo, no cheating, am active (working out and playing sports), and I drink a TON of water, I am “thicker” and go way less often. Honestly water is a big key, with the loss of the large bowel I don’t think you can drink too much water, and the more water I drink the “thicker” i am, and less often I go. (seems backwards but that’s how my body reacts).
So I would try her on the paleo foods, make sure she is keeping her fluids up and just monitor it. Keep track of intact and the results, etc. and if you find something please post and let me know, incase there is some “magic” food out there to help, but I think the whole diet change is good.
Hope that helps…
Miles
Mike,
My cross-fit trainer recently sent this article in an email to me. I have had stomach aches for as long as I can remember, just recently in the past 6 months to a year they have become chronic. This past Friday I went to the emergency room due to the same stomach pains you talk about and was diagnosed with colitis. The docs prescribed me some of the medications you have listed. The first round of medication sent me back to the emergency room Monday, my body was not a fan of them and they gave me new meds which I have been on the past few days, so far so good. I am scheduled for a upper and lower scope next week for more answers. Ever since I started cross-fit last year they have pushed, for lack of a better word, the Paleo diet. This last episode has scared me so much more than previous that I am pretty ready to not have to deal with them anymore. If you have any tips for me as into getting started and sticking to it I would really appreciate it. I am willing to change my diet, I just know it will not be easy. Any guidance would definitely be helpful. Thank you!
Dallas,
Sorry to hear about your luck but this is becoming an ever common theme among people I talk to. Honestly in terms of suggestings to change your diet and start off on Paleo I would really suggest reading Robb’s book, but in the mean time go to his FAQ’s and the quick start guide. This basically gives you the overview that you need to cut out all grains (wheat, oats, rice, corn, etc), legumes (peas, soy beans, soy products), all dairy (including butter and cream for the first 30 days), sugar, and potatoes.
I know this sounds like a lot and you might ask yourself what can I eat then. Well every vegetable you can basically think of, meat, and good fats. I don’t know if there is a way to “ease” into Paleo because if you don’t just right into the deep end you aren’t going to see the benefits and then wonder why am I doing this?
So honestly I would suggest you jump in the deep end, get rid of all the products you have around that aren’t “Paleo approved” and start the diet, get plenty of rest, if you are doing cross-fit i’d tone it down to 3 days a week making sure you give your body lots of time to rest, and heal itself from your new disease and see how things go. I believe this will help you get better and quickly.
Let me know how its goes.
Miles
Dallas,
I have lived with Crohn’s disease for 30 years, the first 24 of those on a standard American diet. The last 6 I’ve been on something close to the Paleo diet. I actually started with the specific carbohydrate diet and morphed into paleo over time. So, I’ve done this both ways. My advice to you is this. Suck it up! You say you “know it will not be easy”. It really isn’t that hard, especially compared to the alternative. Once you get going and find acceptable staple foods (when in doubt, eat eggs, rotisserie chicken, etc.), it really isn’t that hard. After a while, you stop looking at the cookies, cake, pizza, etc. that everyone else eats as food. You have to ask yourself. Is eating cake or pizza or pasta really worth feeling like garbage or making a trip to the emergency room? Is it worth risking your life, or at the very least, your quality of life?
My suggestion is to pick a date at least a month into the future and commit to yourself that you will comply with the diet as closely as you can until then. I did it for 3 months. After the first week or two, I felt so much better that I haven’t really looked back for six years. Another suggestion is to keep a food log at least until you get into a rhythm. That will keep you honest and introduce a sense of accountability, even if only to yourself.
Congratulations on deciding to make this change long before I did. Now, don’t wimp out. Do it.
Todd
Todd,
I am glad to hear that this diet is working for you with Crohn’s. I get to add a new chapter to my story that I posted above. As I stated last June I became really sick again and on meds for what they though at the time was “pouchitis” and i was referred to a specialist. I then went on paleo which seemed to help the symptoms and I got back to ‘normal’, but I have still had the odd symptom here and there and lately no matter what i did I was still having problems.
Well I found out why last week, I finally got into the specialist and my j-pouch is fully inflamed with Crohn’s. It is inflamed the whole way up the small intestine and they took biopsies to rule out cancer. I hear back on May 1 the results of the tests and find out what drugs I am going to be on. I don’t really want to do the drugs but I’ve been strict Paleo and can’t seem to get over the edge and into remission so i am going to take some drug therapy to hopefully get me there and then stick to a paleo life.
Are there any foods on the accepted list that still affect you? looking for any help possible on this new journey with Crohn’s. I’m one of the lucky 3% that develops both Crohn’s and Colitis.
Keeping my head high and going to document my journey to share with everyone.
Miles
Miles,
In addition to Crohn’s, I also have ulcerative colitis. You asked if there was anything considered Paleo that still bothers me. For me, it really depends on my current status. If I am having a minor flare due to high stress or less than perfect compliance on my diet, I have a more difficult time handling raw vegetables. Broccoli, in particular, can really have a profound negative impact on me. However, even if I am having a flare, I can eat most vegetables if they are cooked or steamed.
In general, I use Paleo as my “maintenance” diet and the “specific carbohydrate diet” as a tool for getting myself out of a flare-up. The biggest difference between the two (at least as I execute them) is that Paleo allows sweet potatoes and the SCD does not. When I am completely healthy, I use sweet potatoes as my post-workout carb source. When I am having problems, I’ll switch to ripe bananas and other fruits for that purpose. Also, if you are currently sick, I’d suggest you puree, steam, blend, etc. to give your digestive system a head start and keep residue to a minimum.
Like you, I do whatever I can to avoid drugs. However, if you are in an acute flare, drugs do have their place. I’m not a big supporter of maintenance drugs when you are healthy. But that is something you’ve got to be comfortable with.
Positive attitude and stress reduction are also critical, though not as easy to implement in the real world. However, I think the benefits are worth some perseverance.
Good luck.
Todd
Hi Miles
I’m really sorry to read about this latest setback. Your story reminds me a lot of my son’s: He was diagnosed with ulcerative colitis in the fall of 2010, just before his 18th birthday (like you he had been suffering for quite a while but was too embarassed to say anything until he started seeing blood in the toilet on a daily basis). He took 6MP for 8 months with so-so results until blood tests showed significant liver inflammation; for the past year he has been on varying doses of prednisone and infusions of Remicade every other month. He still had significant symptoms, but managed to go away to college, and survived freshman year AND his dorm meal plan. His gastroenterologist is discouraged that he hasn’t had a better response to the Remicade and has been telling my son he should consider having his colon removed. He is refusing at this point. I have read a lot about Paleo, SCD, GAPS and Perfect Health Diet, and since he came home for the summer he has been doing a blend of all of these…Paleo plus grass-fed butter, aged cheese, white rice and some white and sweet potato. I am going to try making the SCD yogurt, and I make a lot of homemade broth (which I cook the rice in). He noticed an immediate improvement, started sleeping 8 to 9 hours without having to get up, and we were able to go shopping without having to stop and look for public facilities. Woohoo! Unfortunately the other day he went to a pizza place with a friend (resisted the pizza but had breaded chicken) and saw a worsening of his symptoms – wanted to give him such a dopeslap, but settled for pointing out that any chain restaurant is fast-food. He is trying but it’s a long process…
All the best and I hope you find yourself in remission, finally, very soon. Thank you for sharing your story.
Thanks Todd and Suzanne for the positive words. I started my remicade infusions last week and have noticed a difference already, I have another infusion on Thursday and then again at the end of June. If the improvements keep coming at the same rate I will hopefully have this all under control shortly.
I am still doing Paleo and thinking that has something to do with the seeing such great results in a short period of time.
Suzanne as for your son I wish him the best. I would suggest him going on full paleo with no cheating. I think it will definitely help him especially cutting out all the grains and dairy ( that is one easy thing to do even on a prescribed meal plan at college as all you have to tell them is that you are celiac and lactose intolerant and they will need to provide appropriate foods for him then). Trust me he wants to do everything possible not to go through the surgeries and set backs that come along with it.
Miles
Miles, just wanted to say thanks for posting your story and my heart goes out to you, hope that you are better now and off the Remicade. I have a client that is on that particular med and it is nasty stuff, we are trying the autoimmune protocol and hopefully will see some changes, I’ll be sure to post the results on here for all to see. Best of luck Miles, thanks again.
Thom,
I am definitely feeling much better on the Remicade now but sticking with the paleo lifestyle. If I cheat (I don’t and will not have grains) but if i have some popcorn or corn tortillas or surgar I don’t have full blown Crohn’s/colitis symptoms but I do start to have issues. So sticking with the diet and the remicade i am doing the best i have since before i became sick.
I will hopefully one day get off the Remicade but i will never go back to the SAD diet. Love the paleo lifestyle and how i feel on the diet and I do not plan on changing it.
I go for a scope in September to check if the inflamation of my small intestine has improved, if not a may lost most of it and live with an ileostomy forever so here’s hoping, but going by how my symptoms have improved I am thinking it is back to normal!!
Miles
I am a young 20yr old Female from Sydney Australia and I have been hospitalised ever since I was 15 and diagnosed with Crohns. I was moderately healthy until May last year and have had a really bad flare up.
I am now on chemotherapy and a whole range of other drugs, Azathiaprone wasn’t working and I have been trying to do everything right.
I am in hospital at this very moment and this morning I had one of the scariest moments of my life, and its all because of high fructose corn syrup, or an ingredient called Maltodextrin (don’t mind my spelling)
I am about to take on a full switch to Paleo and was wondering how quickly other patients have noticed changes?
I was meant to be medication free three years ago, and these chemical sweeteners and additives are actually killing me.
What are the best Paleo foods, that I can eat in your opinion, right now to build my strength?
I am completely incapable of looking after myself, the nurses have to look after me 24/7.
I’m slowly slowly improving only because I’m on so many drugs and have been on feeding tubes for a week now.
Please someone help me
My life is dependant on this and I have heard and spoken to so many about success with this?
I’m just at a loss, because mainstream doctors don’t want to admit diet can help cure these horrifying auto immune diseases.
Its great to see so much RELEVANT and RECENT positive information.
I’m feeling less depressed already! I can say I am thankful to see other people in my position who are slowly improving.
Sarah,
I am sorry to hear things are going so poorly for you. My personal experience with Crohn’s is probably not all that relevant because I’ve never been as sick as you are. However, if I were in your position, I would try the Specific Carbohydrate Diet, but I would blend, puree, and steam any vegetables you eat to make them easier to digest. I would also use the doctors for what they do best (prescribe medicine to treat disease). Hopefully, the combination of medication to treat the disease state you are in and proper diet to address the root cause will be the answer you are looking for. If you focus on only one aspect, it might not be enough to get you out of this mess and keep you healthy.
Do as much research as you can and don’t expect your doctors to bail you out on their own. They are there to treat your disease. They typically are not good at addressing the root cause that got you there in the first place.
I wish you all the best in your journey back to health.
Todd
I hate to write in forums because it is a waste of time,but I know I can help so it will be wrong not to do it.
Don’t have much time,neither want to spend much time writing so I will be short.It’s up to you how serious you will approach the little information I will give you(do you want to be healthy?)
Been dealing with Ulcerative colitis and other autoimmune diseases for about 5 years.Tried pretty much everything that can be tried in the world of dieting and suplementation with mixed success.However the knowledge was building up with the years and for the last 1-2 years I have been symptom free and feeling great(When I cheat on my diet the problems return until I make 1-2 days back into the diet).
Now paleo is great but its major flaw(as well as SCD’s flaw) is fruits and vegetables(fiber) being allowed for people with all kind of colon/gut problems.Sounds crazy doesn’t it? When was the last time you have heard that fibre is bad for you? NOT NEVER! That’s why so few people have any permanent success with dieting.I was one of those people who were questioning everything-gluten,grains,casein,lactose,fructose,soy,nightshades,sugar,sweeteners etc. etc…but it never came to my mind to question fiber…Everyone is telling us that fibre is healthy. Well it f*cking ain’t!!!!! There are many links and sources I can provide but I don’t have time.You can check this and from there on if you are interested do your own research.
Everything you can find from Konstantin Monastyrsky(this guy is a life saver).Try to find his book Fiber Menace.
http://www.biblelife.org/bowel.htm (This guy is crazy person overall but he has tremendous amount of knowledge,especially when we are talking about diet,food and diseases)
My basic principles to get healthy and to put colitis at least in remission are-
1.Paleo with no fiber and no potatoes/sweet potatoes/nightshades.You can have meats,fish,eggs,fats.Some of you may tolerate cheeses,creams and yogurts(only some).White rice can also be tolerated if you are on your way getting better.A lot of Paleo followers eat white rice post workout.You should be careful with that though.
2.Get sunshine exposure for vitamin D.I don’t care what you eat,you are not getting enough Vitamin D from food and the type vitamin D found in most suplements sucks.Read Doctor Mercola’s take on sunshine and vitamin D.He has great free report.You also shouldn’t use sunscreens because they block vitamin D production.I don’t care what is your diet,without optimum Vitamin D you are gonna have a lot of issues
3.Fish oil(Cod liver is the sh*t),Ghee(clarified butter),Virgin Coconut oil are must
4.If you are predisposed towards constipation you may have problems with the combination of white rice+no fiber.Just cut out on the rice consumption and eat it only post workout.However with no fiber and no rice,just meats and fats you will be having perfectly fine bowel movements.BTW the people who need rice are those who want to gain muscle mass and need carbs,if you do not care about building muscle you can go without it.
5.If you are really messed up,the diet may not work right away.You probably have a lot of bad bacteria in the gut and you have leaky gut and food allergies.Food allergies can be allergies even towards perfectly fine foods like chicken.You should slowly clear those out.I had problems with the bacteria klebsiella and I had to take antibiotic(this was 2 years ago),nothing worked before that,after the antibiotic I was fine for a while eating everything,but after few months the symptoms returned.When I implemented the current diet that’s when everything went back to normal.However my point is that if you can find good specialist to test you for bad bugs and they find which ones you have,you may need an antibiotic.Antibiotics are dangerous but sometimes necessary.If you are going to take antibiotics don’t forget to take a lot of good probiotics during and after the cycle.Overall probiotics are required for good gut health.Watch that there are no sugars,dextrose,potato starch,maltodextrin etc.
6.Google is your best friend.The information is out there.There are people who have been healed and they have shared info.It’s up to you to search and read.There is so much info out there,there is no excuse for you not being healthy.
I was diognosed when I was 7 with ulcerative proctitis and at 16 I lost my lrg intestine. That was in 1986. I’ve have been lucky, I’ve never had a bout of pouchitis. I control everything with diet. I can have dairy and wheat. The only thing that really bothers me is meat and canned veggies or fruit. I thank god that I was at the right place at the right time. The Dr. who did my surgery in 1986 was Dr. Stan Lenard and he had been at the university Hospitol in Seattle teaching how to do the J-pouch surgery. I was given a 5% chance at surviving if I didn’t choose the surgery. Well today I’m 42 next month. Off course there are things that I deal with because of this disease but for the most part I’m healthy.
Mike, I am really thankful that you shared your story, I recently was diagnosed with UC, and I have had a hard time dealing with it. Started up a little over a month ago when I woke up to the most excruciating and uncomfortable pain I thought imaginable, I tried dealing with it a week, being hospitalized for a few days, tried taking the Flagyl and Cipro (doing nothing for the pain), then finally my scope. I actually enjoyed to clear liquids for two days because it was the least painful for me. I lost 15lbs, I was a fit 140lbs from CrossFit and just being active in general, but now I’m 125, I have no definition, I look sickly, I’ve been depressed,and haven’t been able to go to the gym. I am so happy to have come across this testimonial because I feel hope for something better. I will be doing this diet and I will be 100% healthy. Thank you!
9/12/12
My 27 yr old daughter was just diagnosed with crohns disease. any advise anyone can give would be appreciated. We are still in shock and not thinking clearly. She just got out of the hospital and is still in pain (healing?) She refused any of the drugs they want to give her at this time. Miles it’s been over a year for you on Paleo are you still doing ok?
I think that this lifestyle would be good for our whole family.
thank you for your comments everyone, we need hope, we are sooo depressed right now. to much stress in our lives.
Donna,
I am doing well on Paleo and can definitely tell that if I ‘cheat’ that my body does not like it. I am on major meds as well right now, Remicade, which is given by infusion but this is due to my past history. Because I have had the surgery and no longer have a large bowel and due to the progression of my Crohn’s my whole j-pouch (lower 3rd of the small bowel formed into a pouch which acts as my large bowel now) is completely ulcerated, and so I am doing the meds along with the diet in hopes that I can get it under control and will not have to have surgery to remove the pouch and live with an ileostomy the rest of my life. I actually go for a scope next tuesday and will update everyone on the progression of the disease, hopefully everything is healing up. As for your daughter I feel for her as this is definitely something scary for sure. I would totally recommend getting on the diet ASAP and there should be dramatic changes right away. Everyone I know that has UC or Crohn’s seems to be doing well with this diet, especially those recently diagnosed and that have not had major surgeries yet. I am not positive whether i will ever be medication free as right now I cannot risk losing the small bowel as well, but the diet has helped my symptoms and I will have actual visual proof next week.
As far as your daughter goes is she having major symptoms? Is it isolated to one portion of the large or small bowel? How long has she been having symptoms for? It is a hard disease forsure but most people only have one flare up in the lifetime and are ok for the rest of it and I hope your daughter is one of those people. If there is any information/help you want please let me know, I am connected with the crohn’s and colitis foundation of canada and working on getting on their board so I will be able to help more people with these diseases and treating them through a healthy lifestyle rather than meds as I have been on all the meds, have had all the surgeries and don’t wish any of that on anyone.
Let me know if there is anything I can do.
Miles
Good Morning Miles,
I have been thinking about you all weekend. Tuesday is approaching and I will be praying and having positive thoughts.
thank you for the kind words and concern for my daughter. She has the quick list going and even though she hasn’t totally done all of the changes, she has started.
Have you ever heard of Shaklee Vitamins? We have family that uses them and she has sent over some information. I am going to order a product called Vivix to start and see how it will be tolerated and then go from there along with Paleo. I am switching the whole family over, I am not very healthy either, so I am counting on miracles through diet, Miracles happen every day. Everything is expensive, but health is priceless and we take it for granted until something happens. Please keep in touch, you are an amazing person and I am grateful for yur drive to help others.
Great to hear Donna, hope it all works out for you and I’m sure it will. yes it seems expensive compared to premade boxed food but for me I can sacrifce other wants in life for the need of health. People give me this argument a lot with this diet that it is expensive and this and that, well eating healthy now is much less expensive than spending time in the hospital and all the medications out there. Trust me I know as my Remicade shots at $5000 a piece and in the last 4 months I’ve had 4 of them. So yes it may be more expensive then “crap” food but it is well worth the cost and well worth giving something up in your life to enjoy health and happiness. Just make sure to cook enough for leftovers as they are essential in this style of living. Please keep me updated on your daughter and how she battles with this disease. If she has any personal questions regarding the disease and living with it I am here, there is no question too personal for me, I have been there done that with this disease and am here to help.
I will update everyone with my results from tomorrow.
Miles
Hi Donna
I sympathize with your situation – my 19-year-old son was diagnosed with ulcerative colitis two years ago. It’s been quite a journey since then, scary but a lot of learning along the way. My son has been on some strong meds, Remicade, prednisone, mercaptopurine and Lialda, none of which put him in remission. A few months ago after the gastroenterologist tried unsuccessfully to talk him into having his colon removed, he got serious about his diet. We experimented with a few types, ultimately what has made the biggest difference for him was the Specific Carbohydrate Diet. It’s similar to Paleo in that there are no grains, processed foods or sugars (other than honey) allowed. One big difference is that SCD does allow certain dairy products, with a big emphasis on homemade yoghurt for the pro-biotic effect. My son has seen a huge improvement in his symptoms and was able to return to college feeling so much better than last year. The diet is not easy, but well worth the effort. He has been gaining weight again and works out diligently at the gym.
Here’s a link to the official website:
http://www.breakingtheviciouscycle.info/
Paleo books, including Robb’s, are also very helpful, and Paleo recipes add great variety too. I have been following the diet and my daughter is trying it too. Whether your daughter goes with SCD or Paleo, I’m sure she will see a big improvement. Just getting away from processed foods is huge.
Best of luck to you and your daughter.
Hey everyone,
So update on my status, had a scope procedure yesterday. In 4 months my inflammation is down 70% and everything is healing up nicely. I go for another scope in 6 months and at this rate will hopefully be 100% healed! So pumped!
Miles
Awesome news!! Keep us posted! This is so great!
Hi Miles
Glad to hear you are on the road to recovery. I hope you will be able to get off the Remicade soon.
Our insurance was being billed $18K/infusion for my son’s treatments. Is it any wonder there is so little incentive in the medical community to study dietary therapies for IBD?
I wish you the best. Here’s hoping for 100% healed!
hey miles. your IBD story has really had an effect on me. i really hope you are still doing well and that your inflammation has gone down. i have UC and have tried all the medicines, too. remicade failed for me unfortunately as well as a ton of other alternative therapies like LDN and fecal transplant. I have been doing paleo for over two months now. i’ve gotten better, but not remission. still having 6-7 bm’s a day with pain and urgency. i hope i can eventually feel well again and be able to work. my life has been staying on the couch and watching tv. not fun at all, but i’ll be patient if paleo is what can help me.
Joanna,
Please keep us updated as I hope Paleo will work for you. I take it from your message that you aren’t working due to this disease. But on that note as hard as it is you need to get some exercise in. Doesn’t have to be much, I would look at Primal Fitness from marksdailyapple.com as it has different stages for your abilities and doesn’t take long. Great way to start with and only a few days a week. This will help build your body up physically as well as mentally. It will be a great stress release for you as I know you have tons of stress with this brutal disease.
If there is anything else you need please ask.
Miles
hey miles! thanks for responding. i actually “exercise” 6 days a week using the primal guidelines. just a lot of walking/dancing and i do strength training with random weights i have at home. i’ve definitely gained muscle mass so far, but my doctor is never satisfied. i always hear “well, you’re still underweight” even though i gained weight at every appointment since i start paleo.
but you’re right. i’m not working due to UC. i was working at a doctor’s office and personal training/fitness instructor at a gym. it just got to be too hard running to the bathroom and i had accidents. i’m honestly too embarassed to even go back to those places when i am well again.
are you able to work now? i feel bad that i have to depend on my mom for everything even though i’m out of college.
do you take supplements now?
Joanna,
I do work. I moved straight from university to work life but i’m not going to say it was easy. I have my days and I work for a really great company who understands my needs and allows me all the days off I need providing I still get my work done which I do. As for supplements nothing more than Vit D and Omega 3’s.
Personally I wouldn’t feel embarrased about going back to those places, if they can’t hanlde it that’s their issue. I find with UC or Crohn’s and patient needs to first be able to accept the disease and talk about all the complications openly and then you are able to move on and live a free life accidents and all lol. I tend to just laugh at this disease because what else can you do. Might as well find it funny. It took me several years to get there, but now that I am it is amazing.
Hope your journey turns around for you, don’t stop trying or believing. It will get better! you will most likely never be “normal” again, but hey we are all different so what is “normal”. Just find your new norm, accept it, and love life. We only get once chance at this, might as well enjoy it 🙂
Miles
hey miles.
well, looks like i’ll be starting humira next week. i just haven’t been getting any better on paleo even though it’s been 4 months. i actually just had two blood transfusions because my bleeding is so bad. i’ll probably need another one soon and i’m hoping i’m not in the hospital for christmas. uhh this disease is ruthless!
there are multiple crohn’s studies going on in my town, pgh, pa, and are stem cell transpants and helminthic therapy. i so wish i could try them.
if you ever want to email about UC or just life, my email is jazzngym21 at aol dot com. i don’t come on this site too much but it would be nice to have a friend to talk to about this stuff.
Hello Miles,
You mentioned at the very beginning that when you were on Prednisone that you had a lot of joint pain. I too was on Prednisone for 3-1/2 years with U.C. I have been off of it for 4 years. I still have the joint pain. Did yours go away after going off the Prednisone? My doctor has had several tests done on me ie. x-ray, mri, and ultra sound, but it showed nothing. My massage therapist suggested just the other day that I should get in touch with my family doctor as 4 years have gone by and I still live with the pain on my right side (ribs and beside my breast) as well as just around from the right in my ribs at the back. Would love to hear back from you and see if your pain from the Prednisone is still with you, and if so, what are you doing for it. Many thanks Miles.
Marlene,
As arthritis is very common with people who have UC and Crohn’s as it’s another auto-immune disease, I am guess that this is what your symptoms are from. Yes I still have joint pain but it is now to do with arthritis and a side effect of the Remicade.
Miles
Hi Marlene,
I was on prednisone for years. I have had UC for 46 years. Within the last 5 years, a new dr. I went to informed me that all the joint problems I was having was due to the prednisone I had been on. As a woman with UC, you should be on more calcium and vit. D than is ‘normal’ for other women. Also if you are or were on prednisone, your body desperatly needs folic acid. Hope this helps.
Miles, Your story is so inspiring!
I’d love to get your opinion on my situation. I just have been diagnosed with colitis procitis. of course as ive been reading the doctor prescribed me meds (steriods or something) for 2 months then i go back to be checked up on. I’m debating even taking the meds since i believe in the Specific carbohydrate diet ( as i bought the book in suspecting i may have colitis)and i will religiously follow it. As of now my symptoms arent bad its mainly bloody/mucuous stools, bit of cramping and fatigue. I’m don’t know what to do, if i go on the meds i risk side effects, but if i do the diet i guess my risk would be it getting worse? Any insight would be much appreciated im so stressed about what route to go. Either way Im doing the SCD diet… but do i do it with meds or avoid it completely.
Thanks for any input,
Katherine
I have had UC for 5 years and I went through all the nasty medications – none of which worked very well. I couldn’t get off of prednisone even though I was taking Humira and Imuran. I was facing colon removal surgery and I decided to try one last thing – the Specific Carbohydrate Diet (very similar to paleo) – and it worked. I have been eating paleo for the past 3 years and I’m off all my meds except Asacol and things are going great. Oh yeah – I work as a gastroenterology nurse and I even have a few of my doctors suggesting this diet to some of their IBD patients.
Hi All,
An update on my status with my Crohn’s battle. It has been just about a year now since I was diagnosed with Crohn’s and there was a possibility of removing my j-pouch and having to live with an ileostomy bag for the rest of my life. I was put on Remicade and Imuran but in part with that I was doing the Paleo Lifestyle.
Well I had my scope today and there is no more inflammation and I am in remission!!! Best news in quite some time. My health is amazing, I’m in great shape, active and looking and feeling the best I have in quite a while if not ever.
Robb I’d like to thank you for spreading this diet information, I will forever be grateful.
I think the combination of paleo and the remicade/imuran I was on allowed for the dramatic results I have seen in such a great time. My blood numbers, BP, and resting heart rate are amazing and that is a testament to paleo.
I am now working with my doctor to come off the meds and live a healthy, drug free life where a couple years ago I didn’t see myself living without a bag the rest of my life.
Hope everyone is having a great 2013
Miles
Miles,
Congratulations on achieving remission!
Right now, I am where you were a year ago. I had UC and had my colon removed and j-pouch constructed in 1999. I had no issues until a Crohns diagnosis in January of 2013. Now I am starting Remicade and have started the SCD diet. I’ve lost 30 lbs and haven’t been able to work or leave the house for nearly three months. My doctor says we are trying to “save the pouch”. I hope that with diet and Remicade I will get to remission as well.
Matt
Congratulations Miles, that’s terrific. I wish you the best going forward and hope that you will be able to go med-free soon.
My son continues with SCD as best he can in a dorm environment with a meal plan and no cooking facilities. He works out regularly. He continues to have some symptoms but remains med-free and his weight is stable. It’s been challenging, and he’s looking forward to being home this summer and really going strict SCD. One of the hardest things for him is not being able to work, and being dependent on us for money. He had worked part-time as a cashier but got in trouble with his supervisor because of lengthy “bathroom breaks”. He was too embarrassed to tell her about his UC and they declined to rehire him last summer. That has bothered him as much as any of the other challenges that come with this condition.
To all of you have dealt with IBD of any sort, you have my empathy. I began having digestive problems in 1973 when I was 14. When I was 16, joint inflammation was added in to my health problems. The official diagnosis of ulcerative colitis was given when I was 26. Numerous flare-ups and hospitilazations have occurred over the years, some more intense than others with some Crohn’s symptoms showing up as well. Having tried many supplements and healing diets, I am in the process of switching over to eating Paleo, which has supplied many health solutions for me.
However, prior to eating Paleo, I have been taking Wheat Grass Juice (for me, taken in tablet form) for almost three years now, and it was the first time since my teenage years that my bowel movements have been regular and formed. (Those of us who have been diagnosed with any IBD know how beautiful that can be!)
I wish all of you the best as you take ownership of your health. Please consider trying Wheat Grass Juice–it’s been very gentle and healing for me.
Diana
Miles, my brother is suffering from ulcerative colitis… the story is not one for me to post since it is not about me. He is 46 and has lost so much weight over the last month. What is the best way to reach you? I follow Paleo and have the book etc. Any help or advice would be appreciated. Best, Kirsten
Kirsten,
You can contact me at [email protected]
Miles
I would quickly like to share my thoughts on relieving Crohn’s colitis with the Paleo diet. I was diagnosed in 2004 (aged 21), had surgery in 2007 etc etc. I was trying to solve the problem with various diets (dairy-free/white rice/veggie), and only since starting the Paleo diet in January 2013, have I seen a true reversal of symptoms (no more pain, weight loss, no need for meds at all).
Now something for those who are just starting the diet to be very aware of. There are foods that cause pain when your gut is inflamed (meats, veggies, fruit), and there are foods that cause inflammation (grains, dairy, legumes). Because they are completely different people think that meat/veggies/fruit are causing them problems as they are painful to digest when you are inflamed. Do not be fooled! Eliminate grains/dairy/legumes completely for 30 days, while eating Paleo foods that are well chopped up and well chewed! Your inflammation will go down if you stick to the diet and you can eat normally prepared Paleo recipes, you just need to be strict on it. Thanks
Hi Miles,
I was diagnosed with Crohn’s 20 years ago but quickly went into remission until 3 years ago. I was in and out of the hospital, failed all the meds and eventually went on Humira which really helped for a year. I got pregnant and was back to square one, back to taking high doses of steroids, back to the mood swings, back to the horrible moon face. I gave birth to my son a year ago and the Humira started working again as long as I took the shot every single week. Two days ago, I was a day late with my shot and after a weekend of memorial day celbrations with food and drink, I was in pain. Today is Day 1 of Paleo because I just can not do another round of prednisone. I hope it works! Thanks for sharing your story because it is giving me motivation to keep it going!
-Keiranne
Thanks for posting everyone. I was just diagnosed with collagenous colitis (from everything I’ve read it’s chronic and there’s no cure) and was put on endocort for 8 weeks. I have to think long term, there is a better solution, like one that can control my condition through what I eat. My problems started in 2011 when I had a urinary tract infection and was put on cipro – which seemed to clear it, but it soon came back and I was put on another antibiotic. Soon after, I was having all sorts of digestive issues and then got really sick with a fever for 3 days. Up until then I was healthy and working out at the gym everyday. I was put on cipro again and that time I seemed to have a reaction to it. Floaters in my eyes, anxiety and depression and still had digestive problems. Looking back, I think it was the concoction of all the antibiotics I was put on, but I don’t know for sure. Bottom line, I want to figure out how to cope with this diagnosis long term without being on meds as I think there has to be a natural way with diet and I’m worried about side effects. I’m already exercising and ride my bike to the gym every morning. I’m 60 years old and otherwise have been in good shape. Has anyone else had a similar experience with antibiotics or endocort (which I’m nervous about being on long-term)? Thanks in advance!
I really appreciate this blog for bringing up the liver problem symptoms.I believe this blog will help many people out there who are suffering from liver disease. Keep this up and be healthy to all who gonna read this!
I was also on a huge long list of drugs & lastly on Remicade every 8weeks. I finally decided that I wasn’t ok with the side effects & started researching natural routes, which was always discouraged by my Drs to do. I have been eating Paleo for about 8mths now & have been completely symptom free. It has literally been a miracle for me. However in the last few weeks I’ve started showing signs of it flaring again. Is there any suggestions you have to do. I have heard about taking vitamin D & I just recently started doing the apple cider vinegar drink. Please help! I don’t want to go back there.
Hi Miles,
My daughter’s story is very similar to yours. Her colon was removed in 2009 and she now has a J-pouch. She has never had any J-pouch problems but lives with almost constant heartburn. She is considering a Paleo diet. My question is do you modify your Paleo diet from the typical or classic Paleo diet in any way? Do you find you have up the higher carb Paleo foods like sweet potatoes to maintain optimum health? She is already quite thin.
Thanks,
Becky
Hi
I’ve just had a total colectomy which came as a total shock, I am still coming to terms living without a large intestine. Can I still continue on with Paleo? I recently introduced GF bread again and have to admit have been enjoying immensely. Had fried white rice last night, within an hour bloating and heartburn appeared. I am now on a “low fibre” diet and am finding it very difficult to find interesting recipes. My main concern at the moment is that I cannot have lettuce/salads for next 6 weeks. Would love to hear from anyone with suggestions on recipes etc
Thanks
Flooz (Australia)
Just curious, when you say cut out sugar, you are referring to all sweeteners? (honey, syrups etc.).
hi hi , have been suffering for a few years now and sick and tiered of it , confused as to what does and doesn’t work , tried RAW, JUICING,vegan, and many healing docs , just wondering if paolo keeps the body in an alkaline state as this is something i think i do believe in ….saying that from all replies of remissions maybe you guys no best , stuck and confused and need a bit of guidance
thanks so much for your story though , this gives me hope but suppose just loosing confidence as changed so many things so many times with no results, or results briefly and than BANG flare up comes bk ,
http://chriskresser.com/the-ph-myth-part-1
I’m just wondering how I can eat the Paleo diet with Crohn’s and UC when I can’t eat fiber. If you take out the veggies, fruit, and nuts, this leaves nothing to eat except chicken/fish.
With some people, they might need to do something like soups/stews with meat and bone broth at first until their guts heal enough to eat well cooked veggies. There are some supplements and things that can be helpful as well. I would recommend working with someone like Amy Kubal or a good functional medicine doctor that’s experienced with this.
Basically the same question how to do low residue with paleo? Meat/fish and well cooked vegetables; paleo bread without whole nuts or seeds; stewed apple; paleo pancakes. I would love some ideas as I currently have pouchitis and on antibiotics a long time. If things don’t improve soon I will have to get an ileostomy. Many thanks
Linda- That is a great idea. I’ll see if i can get one of our RD’s to write a piece on this. I still play with the right fiber content for myself.
That would be great! Recently recommended diet by fellow j-pouch patient in DC. GI consultant in DC advocates paleo diet along with probiotic VSL#3 to her patients to combat pouchitis. She wants her patients off antibiotics; she based her recommendations on Dr Martin Blaser’s book Missing Microbes. Most low residue diets recommend refined carbohydrates that probably feed the bad bacteria making the inflammation worse? Look forward to reading piece!
Linda
Linda
I’m just wondering, do you find that starting the Paleo Diet during the flare-up helps? Or is it better when the flare-up subsides? My husband has UC and this recent flare-up, no medication seems to work or jumpstart the healing. It’s been almost 6 months. We’re pretty exhausted trying out diets, and even going completely liquid has not helped. This looks like the next thing we want to try, but want to see what your opinion is on when to start, as some natural methods seem to be better at keeping things at bay (like maintenance) better than it is stopping the symptoms.
I’ve just stumbled on this after looking around the web for people’s stories of dealing with IBD . I’ve had UC for 4 years and I’m on Infiximab (Remicede), I am in the UK.
I think its great to read the journey others are having and what they have discovered. I have thought about the Paleo diet many times but I am always nervous of making changes to my diet, because every time I change anything the symptoms start. I live with very mild sysptoms all the time, but they get worse if I catch a cold, get too tired, stressed etc.
Thank you so much for taking the time to help others. So many people suffer alone and don’t have anyone who can offer any real support.
Keep us posted Clare.
This story is a duplicate of my son’s. It took Luke almost 2 months to share his UC symptoms with me. We tried probiotics at the advice of his pediatrician. When symptoms remained, he was referred to a gastroenterologist at Nationwide Children’s Hospital. He had a colonoscopy and endoscopy in September, 2012, which gave him his UC diagnosis. He tried different medications; all of which failed to put him into remission. In July, 2013, he had Total Colectomy and Ileostomy surgery and began living with an ostomy bag. He, too, decided to have J-Pouch surgery which was performed in December, 2013. He had multiple complications and spent 53 days in the hospital and left the hospital weighing 105 pounds (age 16, 5’9″).
He continues to have problems with his J Pouch. Just recently he was diagnosed with Pouchitis; however, I think it has been an ongoing problem since his J pouch surgery. He has been on Cipro since January, 2014. Every time he is weaned from the Cipro, his UC symptoms return.
Luke has been an active boy. He played soccer and basketball during the height of his disease. He has given all that up because of his energy level. From a mother’s standpoint, it crushes me to see him give up what he loves.
I would love for our entire family to try Paleo. How can I get recipes and instruction on how to make the changes necessary?
Your help with this is GREATLY appreciated.
Angela
Angela!
just go to the front page, drop in your email and you will get a free quick start guide, shopping and food guide and a host of other goodies:
http://robbwolf.com/
hi I read a bit of your story about being diagnosed with UC at 6. Six is probably about the time my symptoms started as well. I was not diagnosed until I was about 15 though. I’m 52 now. They ripped my stomach open and tore out my colon when I was a junior in high school at age 17. That was followed by two more gut wrenching surgeries for a continent illeostomy which I still have.
When I was about 13 or 14 I was a nationally ranked distance swimmer. Sounds strange when I think back to this, not sure how I did it. My swim coach was the biggest bastard that ever lived. He used to abuse me by making me swim like 12 miles per day both morning and night. Currently I am an ocean swimmer at nantasket beach in hull massachusetts. I swim with a group called the crusty barnacles http://crustybarnacles.com
I feel fortunate when I read all of the horrible stories people post about this awful disease! Why is it always females posting???
I tried Paleo (The Paleo Diet TM) for about 6 months circa 2009-2010. During this time I was in good health, was following the You Are Your Own Gym program and starting a voyage in my running career that took me to ultra marathons. But I started getting disillusioned with paleo as I researched more about what our ancestors ate pre agriculture and I found evidence of grain consumption, I was also put off by the way the VLC movement had kind of hijacked paleo… At the time our family was moving to France and the pull of fresh bread and pastrys from the boulangerie, was too much and I succumbed to it! My diet that previously had no sugar in it (apart from gels on race day) suddenly lapsed, I was cynical about paleo and I started eating everything and anything telling myself that a sneaky McDonald’s won’t hurt, or a nice pizza… Food in France is generally much better quality than in the UK, but it’s still far to easy to eat too much sugar… Anyway that’s a little bit of my background story, fast forward to last year (July 2014) I was going through a stressful time at work and fell ill with what I thought was a bacterial infection from drinking mountain stream water… After a month of diarrhea and loads of tests I was referred to a Gastroenterologist and the diagnosis was Ulcerative Colitis. This didn’t come as much of a surprise as my mother had it around the same age as me, although she’s been fine for over 20 years now… I was really ill, but mesalazine got me back on track for a while, but with low energy levels I had to decide whether to keep running or go to work, not a difficult decision when your financial situation is dire! I was able to achieve a semi remission on mesalazine for close too 6 months with the odd small flare up now and again. But things got worse and my meds were changed, I was put on Azathioprine and then just recently I’ve started taking Remicade. The doctor is pleased with my bloods, inflammation has gone down but I’m still suffering from diarrhea 5-10 times a day. I’ve come to the conclusion that I need to tweak my diet and have started the IBD-AID protocol. Whilst it’s not strictly paleo, it’s quite close, it appeals to me as the emphasis is not “how our ancestors ate” because I don’t buy the simplicity of this idea, and epigenetic research kind of contradicts it. The point of this diet is to focus on the microbiome and reestablish a healthy guy flora. It eliminates most things that Paleo does except for some grains (oats, rice and quinoa) and some legumes. The idea is that these foods ferment in the gut and as a prebiotic feed our good bacteria. I can attest that over the years my diet has slipped, I’ve been overloading on the sugary snacks and this may have contributed to an imbalance – a few months before I got ill, I had a suspected case of Lymes. The test came back negative but they don’t mess about here, I was on heavy antibiotics for 8 weeks. I believe that the combination of these antibiotics, lifestyle, stress and genetic predisposition made me ill. It seems logical to me now that my lapsed diet was contributing to my illness. Today is day 2 of IBD-AID, I’m keeping positive and hoping that this will work for me… I need to get my life back! Here’s a link for anyone who’s interested in IBD-AID http://www.umassmed.edu/nutrition/ibd/ibd-aid-reference/ so far it’s the only diet that’s got a tiny bit of research behind it for treating chron’s and colitis.
Hi Nick, my story is similar to yours, with the timeline. Do you have an update how the IBD-AID worked for you?
It almost sounds too good to be true? In tears reading the comments. I had UC many years ago and my entire Large Intestine removed ergo my J-Pouch back in 1998. Every few years I’d get pouchitis but a round of Flagyl would cure it. This time around however, it did not. My GI surgeon went up with the scope and saw significant inflammation and my gas and bms though only 5-8 per day have a resounding uniquely putrid smell. They now want to put me on the ever toxic Cipro and I’m afraid to take that particular chemo-theraputic-antibiotic. I consume copious amounts of milk, dairy, cheese and have been for years. I’m wondering if I should start the Paleo or take a chance on the risky Cipro. I have no blood or mucous or fever and only between 5-8 bm’s per day. But the mild cramping and feeling of unease with my pouch in addition to the GI validating inflammation has let me know that something is going on. Fair game to hit the diet hard tonight? Thoughts?
Hey Miles,
I was diagnosed with UC in June 2015 by way of a colonoscopy that showed I also had a fistula. My labs came back positive for E. coli, staph, and strep as well. I was put on Lialda and Imuran along with some strong antibiotics for the infections. Fast forward to November 2015, I had another colonoscopy showing I am in remission however a biopsy came back positive for C. diff, for which I was placed on antibiotics. The only dietary changes I have made are avoiding red meat and pork and all seafood except fish. My husband and I are trying to get pregnant so I am wanting to be at optimal health. I have read lots about the paleo diet and have tried it but never stuck with it. All the recommended diets like SC and paleo rely heavily on meats and vegetables. My concern is that I would have great difficulty with these diets since I am already having to limit most meats. Do you have any suggestions for this? Thanks in advance!
Thanks, great article. I can say ditto to it all. Now I live on flagyl and ciprol …but 6 weeks ago I started the paleo diet… so I feel amazing, well so much better -not off the antibiotics yet but working on it, stress really makes things flare up so I am exercising, and looking into ways to cope with a stressful job- but I am able to work which is something to be thankful for. People with UC that I have met have one thing in common – high achievers, they really are hard on themselves. Anyway thanks for sharing your story you give us all hope ?
Miles,
Have you heard of ASEA? You have no idea how incredible this stuff is and is a breakthrough. Please check it out! https://www.youtube.com/watch?v=zP5BQF7pp8M
Seven Minute Quick Draw Video:
http://www.amazingmolecules.com/product/#!/-1/
Nine Minute Video:
http://www.scienceofasea.com
No offense Hollie, but this screams pseudoscience and multi-level-marketing BS.
Has this happened to anyone else? I started the paleo diet at the beginning of the month about 10 days ago the first 6 or 7 days i was doing great followed by 2 days or worsened symptoms then before i stated and now I’m doing good again. was that the UC trying to fight to protect itself or something? Thanks for any input you guys can give me. I want to beat this thing like I am sure we all do
I had j pouch surgery for ulcerative colitis back In 1990 and have been lucky enough to have no bouts of pouchitis. I have had major joint and kidney stone issues over the years and after ruling out Lymes ( had 4 out of 5 bands positive first time then none the following- wierd!) I have been diagnosed with rheumatoid. Not sure if it’s the methotrexate or the RA but have terrible mouth ulcers and thrush. So now rheumatologist took me off methotrexate and suggesting Humera. I be decided to wait and have been on whole 30 for 3 weeks – not much difference like others experience which is discouraging but I’ll try anything to avoid Humera. Any hope for me or should I be trying a more restricted AIP diet? Any advise is greatly appreciated.
@#$@$ unreal. Absolutely deceptive and proves absolutely NOTHING except deceive people into reading an article which has absolutely NOTHING to do with the title. Fuck you liar.
Hey guys my GI doc was involved in a horrible accident and I was taken over by his Jr. partner.
IBS for years. UC just Dxed. He started me on a non Rx VSL#3. I changed my life. It is an expensive probiotic but worked well for me. Try it. Beets taking Vanc every 6 Months. Not a cur, but if helps any person its worth it. Takes a month to work. I feel your pain. Lyles
Fuck this mutilation cult bullshit, go to nutritionfacts.org and learn shit to save your fucking life from the MD cult and its lies. You don’t have to go full vegan, but at least 100% no dairy to start, then cut out as much oil as possible, only use EV olive oil, no sugar drinks, no pop, low fodmap foods. Take 1 teaspoon of kratom per day. Research other herbs, there are thousands of them we have been kept from knowing even exist or brainwashed against by the lies of the deviant atheistic MD cult. Eat mostly boiled mashed potatos, boiled squash, brown rice, bok choy, carrots, lemons, limes, mint, cilantro, ginger, sweet potato, lettuces of all kinds especially bitter ones. Supplements, apple cider vinegar, berberine, betaine, nootropics, fresh ground flax meal, anchovy purified fish oil, organic ghee occasionally. If you once a week have beef or chicken, boil it in a stew instead of frying or grilling. Going mostly vegan saved my life from the mutilators who only gave me the option to rip out my whole colon and with that comes your asshole and ability to use your dick to procreate as well, and then they cut you open and hang a bag outside your body so you can remain their slave for life perpetuating their wickedly evil cult.