Diet, food, drink, snacks…WHAT should we eat with colitis and WHY?
Ever since starting this website, it’s been amazing to see how many people truly want to treat their disease with their diet or more simply, by eating and drinking things that agree with their bodies. I think it’s great!
Much of what I do in terms of diet is based on the “Specific Carbohydrate Diet™” or SCD. And its been a pretty incredible journey to say the least. After 5 years of success, I’m happy as ever that my body has come back to life and hopefully you’ll feel the same very soon too!
Here’s an email I received in January from a UC’er who follows the site and diet, her name is Peg-
Adam, please encourage your readers to give at least 6 weeks or more to try a diet that will kill off the bad bacteria in the gut and get the body going to produce the good bacteria. UC is a sign that our body is screaming out to us for help. Healthy food, the right vitamins and good probiotics will start us on the right path for recovery. I have been in remission for several months and it’s a blessing that I am not obsessed of always thinking of where is the closest bathroom. Thanks again for being there for all of us suffering from UC. Peg
Adam and Family,Thank you for your website and your positive attitude. If it weren’t for you I don’t know how long it would have taken to find out about SCD (diet) for UC!My daughter has been on SCD since last year (just after she was diagnosed) and she is doing great, a fantastic girl, she is involved in school and sports. With Lialda and SCD she has the life everyone should have, no flares!Sincerest Gratitude,Karen
SCD has actually been around for several decades, but to most people it’s previously unknown. (It’s almost never talked about in the doctor’s office…and I think that’s a big mistake.)
I’d never heard of it either. Not a single doctor ever told me about treating my UC with diet. The Specific Carbohydrate Diet™ has actually been tested out for well over 45 years by two pretty spectacular people. Both Elaine Gottschall and Dr. Hass spent thousands of hours figuring out what works well and what does not in terms of foods. And I’m very grateful for all their hard work.
What’s great is that diet has worked for so many people who follow this site (including me) by healing and helping our UC symptoms.
Many UC’ers who use diet are amazed that their doctors never said anything to them about it. But there’s no reason for you to be angry or upset with your doctors, (actually, feel free to be pissed at them if it makes you feel better). The reality is drug companies and most health care system can’t profit when colitis patients begin to feel better on their own. It’s simple math at that point. If you don’t control your UC with medications…you don’t purchase medications. No rocket science needed here right…
If there was a way for lots of money to be made, and for drug companies as well as doctors to profit from diet changes, you definitely would have heard about this a long time ago, probably at your first doctor visit. When I started treating my symptoms with diet, I didn’t need all this “help” from the medical world anymore. I didn’t need to constantly be re-filling my prescriptions every month. Drug companies hate people like me, they don’t make a dime off people like me. Pretty cool right!
But there’s more, by moving away from medications and on with diet, I finally stopped worrying about medication side effects. It really frustrates the hell out of me when other UC’ers email their long list of side effects that their medications are inflicting on their body. Prednisone/Prednisolone is probably the worst in terms of side effects, but there’s a bunch of others that can contribute to the side effects that are so unfortunate.
“By Changing My Diet, I put my UC into remission,
and got OFF ALL MEDICATIONS.” -Adam
The Science behind this diet is pretty simple. I’ll try to explain it to you in simple terms. “Bad bacteria” in the colon are triggering the immune system to fight. And, that bad bacteria we create from certain foods we eat that isn’t fully digested(certain breads, wheat products, certain sugars for example, corn).
So, when we eliminate those “bad” foods that cause “bad bacteria growth” our immune systems don’t have to keep killing off invaders and attacking. That’s the idea.
It’s Pretty Simple.
Below is a list of some Good and Bad Foods:
(there is a long list of different meals/recipes in my 100 plus page eCookbook (which has been ordered by UC’ers and concerned family members worldwide) with easy to use instructions and ingredient lists)
- Chicken (baked, broiled, even off the BBQ if that’s all you have)
- Chicken soup (without noodles)
- Hamburger meat, along with most other meats (baked, broiled, off the grill)
- Eggs (many people can tolerate eggs very well, some people cannot, so don’t freak out if that’s you)
- Vegetables (a common misunderstanding is that vegetables are bad for people with UC. I eat veggies everyday and have for years since my diagnosis. There are times however, like if you are in an active flare where you may want to limit and/or cook veggies more than usual to easy the digestion process)
- Fruits (many people can handle some fruit in their diet, especially when symptoms have calmed down)
- Beer and most Alcohol
- Milk and most milk products
- Most processed foods (often there are all sorts of unknown ingredients/additives)
How about you? Where do you fit in terms of the lists above? Are some of the foods you eat in the “Bad” list? If so, you might want to consider making some changes to your diet, especially if colitis symptoms are out of control and active right now.
To read and learn more, I’d encourage you to learn more about the ebooks I’ve written. Along with my wife, I’ve written up all of the most common meals we prepare. I’ve outlined the meals I ate when I was coming out of a flare, as well as the foods I eat to stay in remission.
My ebook’s details are here: Adam’s Ebooks Page
But, I’d suggest first off, read reviews from so many other UC’ers about how this diet has worked for them. You can read SCD diet reviews here.
If you are looking for a change and willing to invest a little bit of time. And if you’re looking to get control back into your life and not having ulcerative colitis run you around, I think you’ll really enjoy my ebooks.
In good health,
Thank You for the website love!! Yours is off to a great start, I can’t wait to see what’s in store!
The diet has helped me. I still take medication, but I feel much better. I was going to start taking Aciphex for Acid Reflux, but since starting the diet, I don’t need it. I recently bought a yogurt maker to make the SCD yogurt and that has worked out well. I am getting better at reading labels. I shop more often at Trader Joe’s for specialized items.
I love the corn tortillas. After reading that they were okay to eat, my husband bought some for me and I was hooked. They make lunch at work better.
I am just starting the diet after a year of this crap. I was wondering what varieties you have to fill the tacos, thought they would be a nice change, and Adam seems to get away wih eating them.
Like you I found my cure with diet modification after 10 miserable years with UC.
Although I started out on the SCD I found I had to change/eliminate foods to have best results. The book I HIGHLY recommend is “Life Without Bread” which really gave me insight on the foods that hurt our colons, that is carbohydrates.
My diet is no carb, very little fruit, no fruit juices. High amounts of animal protein (no soy), all veggies with no starch (no potatoes for example), nuts and nut flour are good. Dairy does not do well with my colon except a v. small amount of hard cheese.
It sounds extreme but I am SO willing to do it compared to the agony of UC which I have had for almost 10 years. Drugs never really made any improvement for me and I never had any “remission” until I started the diet.
BTW I tried the SCD over 5 years ago with no results. I think this is due to that diet needing to be modified for my narrow requirements and I was too new at this to figure it out. It took desperation for me to try it one more time and really listen hard to what certain foods did to me and eliminate them.
Daily I also take an Acidophilus pill, a teaspoon of fish oil, 2000 IU Vitamin E and a couple juice-size portions of “greens” juice made at home every day.
No doctor ever suggested anything but more pills for me. This makes me lose respect for medical doctors. Not just one doctor, I’ve had 4 over the years.
All they want to do is another colonoscopy and prescribe pills. They are not in the business of curing us, they want a lifetime patient which is what UC is unless we find a cure on our own.
Thanks for the comment. In fact, comments like yours are my FAVORITE types of comments for a few reasons, and I am sure all of the others who look at or will look at the site will agree.
The fact that you struggled with UC, tried a bunch of potential treatments, tried the diet I was told, modified it to fit you, and have found awesome results is SO DARN COOL!.
Congrats for figuring out how to get past UC. That is great news and I can’t wait to tell people to go to your comment when they write in feeling down in the dumps. Thank again, you rock!
I have indeterminate colitis. I had septic shock and nearly died. The medics don’t know how I got from you septic shock to colitis.
I have had diarrhoea for six months.
I fast for 24 hours to give my colon a rest. A bit like a sprained ankle, rest it.
I am in England UK and I don’t pay for drugs.
I think your views on drug companies and big business is a bit off.
Without drugs I would have died from septic shock. Someone had to develop these drugs and it costs lots of money.
I have noted your diet suggestions and will try it out.
No more cheese and pickle on toast.
Good luck with the diet changes, and I’m really happy that medications helped you thru that hard times regarding the septic shock. The do work wonders for some people, but unfortunately for ulcerative colitis, they don’t always work for everyone. Good luck and keep us posted on your progress,
Denise, you are so right about the doctors, mine just keeps doing colonoscopys and I have been on Flagyl, and now Asacol., and oh don’t eat anything crunchy, a low fiber, low residue diet. So far nothing has worked, I did by the book Vicious Cycle, but it seems you really have to cook all your own meals. I have no idea what to take to work for lunch, and I still have to cook for for my husband. I work and don’t have lots of extra time. Is there any way to just stay away from carbs without going to the extreme of making your own condiments and yogurt? Can this diet be made simple? I would appreciate your imput.
You’ve got a great question, how die hard does one need to get to see results?…
For me, I don’t make any yogurt, and I don’t really make any condiments of my own. I just make use with what I can get at the grocery store.( If I was a better cook, I would like making my own stuff, but that will probably never be the case)
I never got into making the yogurt for probably the same reasons you seem to have, not enough time, and was not into that.
For me, a common meal is a salad with either steak or chicken. I make chili quite a bit, I’m sure I break some rules with that, but for the most part it seems to work fine for me.(burger meat, McCormicks seasoning, onion,tomato, can of kidney beans without any sugar.)
Also, for breakfast I make bacon and eggs quite a bit, seems to work reallly good for me.
Lunch, I have quite a few more salads than I used to do in my former life, and also, quite a bit of mexican food, with corn tortillas.(many people following a diet for UC don’t eat Corn at all, for me it has not been a problem)
I make up a morning smoothie quite a bit and it seems to work well, and I can make one up in just about 2 minutes flat, so my guess is faster than anyone else’s typical moring breakfast other than cereal which is a Major NO NO for me.
Let me know if that helps out at all,
With regard to yogurt, one thing that you can do to improve a commercial yogurt by removing any remaining lactose is to store it in a warm place in your kitchen for 24 hours before you put it in the refrigerator. Do this only with a fresh unopened/sealed plain yogurt. If the sealed container bubbles up, it means it has gone bad, so do not eat. This has never happened to me so far. This extra fermentation in you kitchen allows the culture to eat the remaining lactose. This is what I do when I am travelling and can’t make my own yogurt.
Making yogurt at home is very very simple. Boil milk till you see a layer on top. let it cool down till its warm to little hot.- slightly hotter than warm . Add 1-2 spoons of yogurt. If you don’t have the culture, ask any Indian or borrow from an Indian restaurant.They will be happy to lend you some. cover and let sit. In summer, it will be done in 4-5 hrs. and 8 hrs. in winter. You can add a dried red chili or a piece of tamrind just to be on safe side- it quickens the process or guarantees but not necessary.
Hi Adam I am confused about cereal A No NO !! I have Ulcerative Colitis and Celiac Disease I eat gluten free cereal it seems to work , but absolutely no carbs .
One thing I think everyone should think about is that if you are doing well with something and no symptoms….great. For me, I don’t use medications and I stay away form all cereals gluten free or not. I’m not sure if you use medications as well, but if you are symptom free and eating different things than what I wrote about, that is a win!! best of luck to you, Adam
Thats contradictory, gluten free cereals but no carbs?
grains are carbs?
I saw your message and it sounds like me exactly. What is this book you are talking about and what modifications did you make. I just got out of the hospital again and everything I eat I get such cramping and pain I can not take it anymore. Any suggestions I would greatly appreciate.
I can relate to cramping pains when I eat things that are on my list of sensitivities. I was diagnosed being Histamine Intolerant after 6 years of being diagnosed with colitis. The cramping is something not digesting in your system. listen to it, realize what it was you ate, and avoid for awhile. then try it again.
Foods that I have to avoid that trigger cramps are any processed meats (avoid anything with Nitrates), older aged cheese. I actually don’t do well with milk, but somehow young cheeses in small quantities work okay for me at times (no more Parmiggiano Regiano, which is hard for a girl who grew up in a Italian Canadian home). Eggs, milk and most nuts came up on the list too. Legumes and beans are a definite NO, however funny enough doc was surprised I am okay with Soy (I get the bio only, ethical reasons). Another food that gives me mega reaction in my joins is fish and seafoods (I enjoy the rare occasional shrimp dish from my hubby, but I deal with the symptoms and try to be good the days after. Tummy tea is my friend (fennel/anis, nettle, camomile, and a few more). Pre-prepared food also contain more histamines so I do cook more fresh, soups are great, or stews without tomatoes (also high on the histamine food list)! I total agree with Adam a nice portion of meat (red or wild, turkey, chicken) with veggies (at the moment cooked), but salad was also good before the flare (I think due to covid). However if you are sensitive to the histamines anything with vinegars, or grapes contain lots of natural sulfides, and histamines. For a Salad dressing I like a good portion of Olive oil with salt oregano, a touch of apple juice or some other okay fruit.juice. however some fruits can be a culprit of inflamation, ie. overripe bananas, and strawberries (containing lots of histamines. to the grain issues… I am not celiac, but gluten is a culprit too. the grains I stick to are rice and corn (as Adam also notes corn is okay for him). I enjoy the occasional popcorn with butter and salt (although that is an occasional treat as it can be abrasive on the darm). That is just a bit in a ‘nutshell’ ;-) good luck experimenting and finding what works for you. We are all different and need to find what is in our picture frame ;-). Cheers!
I am convinced that keeping away from white flour is a good start. Different diets may work for different people. Many health problems including UC begin with bad habits, then continuing bad habits lead to a chronic health problem. After dealing with several serious health problems and 30 years of research I have found some common foundations that are useful for a variety of health problems. UC begins (in my opinion) with the breaking down of the mucus lining. Without this lining the enzymes and acids necessary for digesting food would literally eat our stomach’s tissue. But this lining or protective layer protects our sensitive tissue. If this lining heals properly UC can be eliminated entirely without worrying about reoccurrence. Once the mucus lining deteriorates in a segment of the stomach sores develop, and until this lining is rebuilt and new tissue regenerated the condition worsens,
Saccharides, and in particular mucopolysaccharides are necessary for the rebuilding of this tissue. Pantothentic acid and colloidal gold may also prove beneficial if used with mps, One good source of mps is aloe vera. Since av may have a laxative affect in the beginning one should start with one to two ounces twice a day and increase gradually.
Just remember that ulcerative colitis is a breaking down of this lining and tissue must be restored and made healthy again.
Is there a test or a way to find out if the intestinal lining has healed properly?
Now that I have not replied for an entire year I must with embarrassment answer. A colonoscopy can sometimes find the areas where tissue breaking down has occurred–or whatever test was used to make the diagnosis of UC to begin with.
I have similar negative opinion about doctors in the US (Medical Mafia). I feel as if they intentionally want to keep you hooked to your disease as well as the expensive medicines so they can cater to the Drug Mafia. I specifically asked my doctor if taking ‘pro biotic’ or changing my food/diet will make any difference at all, and he categorically said, “NO”. A few months after I came to India (May 14, 2014), I started Homeopathic treatment, consulted with a Nutritionist and changed my diet, going completely Gluten Free, no milk, tons of home made Yoghurt with all Pro-biotic intact (which are killed with Pasturization), and also take Pro-biotic as supplement, and I am already off 6MP, Steroids, and am now tapering off Lialda 1.2 Gm x pills a day. I am taking my own sweet time to tape off Lialda, but I am doing it for sure, with no negative consequences. I have been in remission since November 2014, with no episodes at all. I am so happy, feel free and alive. Please try Homeopathy, if you can find a doctor in the US. I know there is a Holistic Healing centre in CA, which may be able to point you in the right direction. Hopefully you can also get better with Homeopathy and dietary changes. Good luck!
Connie I am 52, just diagnosed with UC this past week. I weighed 132 on Monday, 1 week later I am 126. Have no idea what I can eat! Can someone tell me during this flare? I feel I am dying!
Agreed Connie 100 percent with all you said!
I’m right there with Adam, Denise, I LOVE to hear stories like this!!! I know for sure that millions of people could be a lot healthier if they’d just make the commitment to heal naturally. I’m so glad you shared your story!
I’ve tried every diet imaginable… including liquid diets and baby food… nothing worked. i wish i was as lucky to have diet work, then i probably wouldn’t be talking surgery like i am now!
I’m new to the site & will post my story later however, I’ve had UC since I was 4 years old so it has been quite awhile for me. I’ve found that most carbs bother me in way or another. Anyway, I will post more later & I’m happy to be here.
In regards to Peanut Butter in Ireland and UK …Kelkin Peanut butter is what I use it just has peanuts and oil! Its great. Kelkin are great for making produce for dietary needs. Also for anyone with a sweet tooth I love making my special jam…which is apple and blueberry jam…I basically throw them in a pot and stew them and add honey instead of sugar…its soo sweet you would swear there is a ton of sugar in it. :)
Are you really ok with eating corn tortillas? (Just a note they are really not allowed on SCD ;)
I originally went gluten-free before SCD and tried corn tortillas and the experience was pretty awful.
What’s up! I think I am doing pretty good with the corn tortillas. I definitely break the rules of the true SCD with a few things, but seem to be doing pretty darn good. But I am always looking for ways to feel even better, so I will try to cut back on the corn tortillas for a little while and see if anythings happens.(Don’t hold me to it though right away, I’m a massive sucker for mexican food) Thanks for keeping your site active too. Side note to anyone reading, got to Kat’s blog ASAP, there is a link on everypage of this site down at botom right hand side.
Hi christina here just wondering does anyone out there have Celiac Dosesse & Ulcerstive Colitis ??
Hi Christina again,
Yes, there are people who have both of the diagnosis, not super common, but there have been others who have written about that.
I have microscopic or collogenous colitis. I had a horrible flare that sent me in for a colonoscopy in October of 2007. I was on the Asocol for a while but grew very tired of taking the horse pill! At this point I am in constant pain and will be trying diet changes as you are suggesting to combat the problem. I’ll let you know if it works!
I’ll keep the fingers crossed that you have good luck like me.
I hear you loud and clear about the Asacol horse pills, I started calling them Crapacol pills to my wife.
Not sure where you are at, but if you are in the states, and would like me to send you my copy of the book I talk about on the site which has the diet in it, just let me know. you can email me at firstname.lastname@example.org if you like. Otherwise, you can get it yourself.
Wow! That’s pretty startling but not really surprising. I’ve cut way back on my diet soda intake but that sucralose stuff has found its way into so many 0 calorie drinks it’s hard to get away from it.
I am in the same shoes as you with no time and making meals for other people. But it can work! I find SCD meals are quick and easy and I don’t have any yoghurts or condiments. If you have a blender it makes it easier. You can make smoothies for breakfast and you can make soups say after dinner. Cook a few veggies and then throw them in a blender and bring to work the next day. Also use lettuce leaves as wraps for chicken or tuna and for dinners I find omlettes are quick and easy. Or last night I made honey and garlic chicken. It tastes amazing! All the family would love it. It is in the BTVC book. Then throw on veggies for everyone and maybe potatoes for everyone else like I did! Sorted!
I was just recently diagnosed with UC and I was very scared to eat anything pretty much. I found this site and started face my fears about eating things that i love. Well i am eating very well and have stopped the need for meds. so i thank ya’ll for this site
That’s awesome news, what type of diet are you using to get things back in order? Thanks for letting us know how you’re doing buddy!
I am kind of desperate here. I was diagnosed about 5 years ago with UC and it was all because I quit smoking. The doc told me for some reason the nicotine kept the inflamation down so therefore I never had a flare up when I was smoking. I quit to better my health and then get this. I have three children but at the time when I was smoking I was able to chauffauer my kids around with there friends and be the very attentive and fun mom. I am no longer that person and feel that it has impacted my kids lives, in fact I know it has. I am just tired of dealing with this. I am sick of not being able to be spontaneous and say to the kids, let’s get in the car and pick up your friends and go shopping or go to the movies. When I do go out I am always looking for a bathroom. I am on the generic brand of colozal now after already trying Lialda & asacol. I have been hospitalized three times and have tried to stick to a gluten free diet because I was told that helps but it is very expensive. Mornings are the worst for me. As soon as I open my eyes I immediately have to go and that will last about two to three hours. What is remission exactly because I do not think that I have experienced yet?
I am so sorry to hear about how this nasty colitis has affected you and the rest of your family so much. I definitely understand exactly what you are talking about. In fact, i am in the middle of a nasty flare up at this very moment, and wanting more than ever to get things back in order to move on through life(its a great feeling writing like this to someone who knows exactly what I’m talking about)j
Anyways, to answer your question as best I can “What is remission exactly..?”
For me, I felt I was in remission finally after just about one year of being diagnosed. After my diagnosis I had tried prednisone,asascol,colazal,sulfasalazine,Remicade, and Humira(in that order) also some enemas mixed in. Anyways, nothing seemed to get me in any type of symptom free state for more than a day or two, so I considered them all a failure in that respect. Once I started the SCD diet after trying all those medications, things started to improve. By improve I mean harder bowel movemnts, blood getting much less in volume and in frequency, and gaining weight back. Eventually after about 6 weeks on the strict diet, I was off all medications and taking 1-2 craps per day. Things were looking really up for the next 14 months. But, now, I find myself in a pretty bad flare up once again. I have not gone on any meds yet, and the bleeding and loose stools are back. I do believe that me changing my strictness on the diet over the last six months very well could be the contributing factor in why I am where I am currently. So I still have faith in the diet, especially as I know far too many people who have had much more continued success on it than me, and who are also more strict on it than I am.
I hope this helps answer some of your questions. In a nutshell, for me remission is, no bleeding, no cramping, 1-2 bowel movements that are hard per day, normal energy levels, and no joint pains or lower back pains.
Adam are you okay now? I heard about your condition read all your posts… Please tell us your updates and how you are presently doing since then… hugs
I’m feeling really good. Have put on some weight even in the past few years so am back where I was before my diagnosis. Strength is back too which is nice. And I’m sleeping through the night once again which is awesome. I wish you the best with your UC too!
I was diagnosed with UC two years ago. Have been put on lialda, enemas, asacol, prednisone, Integra ,and now Doc really wants me to go on Humira. Diet definitely helps but not entirely. although I have to admit I do eat the gluten free cookies which probably have other ingredients in them that are not good for me? Also I wanted to know what it was like being on Humira? Did it make you feel better?
I’m a little nervous to go on that medicine.
Roughly five or six months after my diagnosis I started Humira. Unfortunately, it became pretty clear quite quickly that it wasn’t helpful for me. I was part of a group of patients who had some severe reactions to the medications actually. that story is here: https://ihaveuc.com/side-effects-from-humira/
Thanks so much for this valuable information. I really love my 3rd doctor….but even so….he’s just really always pushing the drugs. How do you respond to the doctors without damaging their egos? I plan to buy your book and follow the diet which I have been doing somewhat of a gluten free diet, etc. but clearly not restrictive enough. Do you happen to have a hard copy of your book for sale? I need larger print.
Also, do you know anything about Tramedol? long term side effects? I have to take it three times a day for pain… and would really love to ween off the stuff.
Again, I can’t thank you enough for doing this!
Warmest wishes for a Happy and HEALTHY New Year
Beverly, Regarding your questions from Jan 22nd, the ebooks are available only in digital format. You can print them whenever you like from a home printer or at a print shop. As for Tramedol, I myself have not heard of that medication and I can’t recall it being mentioned heavily on the site previously. I wish you the best, and keep us posted on how things go:)
Hi Adam I came to your blog searching for an answer over the Internet. Great blog by the way! My 5 year old son was diagnosed with UC on April. We’ve been on prednisone pentasa Imuran and now they want to introduce remicade. Does the diet really works? We are in the hospital now. We don’t want to start the remicade treatment yet. Any words of advice? He also has light osteopenia.
There are many people who have had great success with using the diet, and others who have not been as successful as is the case with all of the different UC treatments that exist. I would take note that it would be very difficult to start a diet like this while in a hospital enviornment since you are relying on others to prepare most/all of the meals. Better would be to begin the diet changes once home again(in my opinion).
This is merely an opinion and not intended to replace his regular attending physician. Osteopenia is not that common for a 5 year old and it may be related to the UC. Blood calcium levels should show up on his regular blood profile. Another consideration is magnesium levels. It seems that some doctors for whatever reason continue to test magnesium levels by blood or blood serum–neither being an acceptable test for magnesium—more accurately determined by hair analysis. Calcium and magnesium deficiencies often lead to inflammation–and it prolonged there can be a deterioration of the mucosa which protects the stomach and the intestines from acids and digestive enzymes. So, it would be logical to connect the osteopenia with the UC–and in fact one would likely be a medical marker for the other. A reasonable approach would be to take a cal-mag supplement 3 times a day and one to 2 ounces of aloe-vera 3 times a day. It is always possible that the aloe could have a laxative affect–so don’t think more is necessarily better.
The reason that calcium and magnesium levels can often lead to deterioration within the stomach and gut is that both are alkaline–though broken down by enzymes in the stomach. After being broken down that reduces the ph within the stomach and the intestines. Too much acid or the wrong mix of acids within the stomach lead to a breaking down of the mucosa which is a thin lining in the stomach that protects the stomach from acids and enzyme activity. If not for the mucosa the acids and enzymes in the stomach would literally eat the stomach up. Osteopenia and UC at the same time sounds pretty much like cause and effect.
Hi Gary! And my best regards to Adam!!! My name is Edward. My son Daniel is 17 and had uc for two years. He is in the hospital now and colonoscopy was performed yesterday that showed he has pancolitis severe form. Next step his gi Doctor prescribing Is Remicade. We definitely want to avoid that and move forward with the proper diet and try a non conventional medicine approach. Either Chinese (combination of acupuncture, diet and herbal remedies) or homeopathy (combination of strict gluten, dairy and sugar free diet plus remedies. Which aproach would you recommend first? Any other recommendations?
I have had UC since my late 20’s. Can’t stand prednisone (weight gain) and Sulfasazaline gives me horrible headaches. I have maintained my self for the most part with nicotine lozenges for over 5 years. If I do have a flare up I take the sulfa for a week. Over the last 6 months tho, if I have vodka in mixed drinks, I have an almost immediate flare up that goes away in a couple of days without taking the sulfa, as if it is an allergy. Any one else experience this?
P.S.I have been on a very specific carb diet (Adkin’s) but didnt know it could help UC
What you are talking about I haven’t heard yet from anyone else on the site(with regards to the nicotine lozenges helping your UC. But, geez, that sounds great! Good for you for doing something super alternative. Have you also been on the adkins diet for the past 5 years too? I wondering what you feel is helping your uc stay out flares the most, (no vodka, nicotine lozenges, diet etc…) any thoughts on that?
As for similarities, I definitely had horrible headaches when I started sulfasalazine, and they only went away once I dropped the dose way down. I think I recall a few others talking of the nasty headaches after that drug too. I don’t drink alcohol, so can’t really comment on that one though. best of luck to you!
Adam is unbelievably nice. Adam has a great site here and I think it is helping a lot of people. Beth, you really need to stop the alcohol. Hey Beth, if you are motivated enough to stay on Adkins (not an easy task–I know) then you ought to be able to stay off the alcohol–at least for a while. I am putting on my helmet and raising my shield before you reply–ha.
Hi Sherri, I also smoked. I was diagnosed with UC when I was 15. Took meds for maybe less than a year and then started smoking when I was 16. I went into remission not even really realizing it. Now, 24 years later, I quit smoking a year ago to live a healthier life and all signs and symptoms have returned!! Was it the nicotine or all the chemicals that kept it at bay or both. Geezz! I was actually thinking about the nicotine patch(might be to potent though), but maybe the lozenges may help? Certainly do NOT want to smoke ever again. I have come across some articles about smoking(nicotine) that help suppress our intestines. We might not be stressed but our intestines do not now that. As far as the SCD, I love it! and it has helped me quite a bit. Been on it, well, actually 1 month today. Although does anyone know about the alomond flour. I think I may have been eating too many muffins and alomond flour bread that it has irritated my colon. Thank you…
Interesting stuff regarding SCD, smoking, and almond flour for you.
Hey, regarding the almond flour, there have been several people who have also said that too much almond flour has definitely irritated them, so it might be a good idea for you to take it easy with that stuff until later when you are either more healed, or just to go light on that for quite some time.
I try not to put down too many muffins myself when I am not feeling 100%, even though they taste so good.:)
Hi my name is Andrea, i have uc in the whole of my colon, i am in remission now on gastriwin 40mg and pentasa 3000g 3 times a day.What works is forget about stress and just relax live life and if someone bothers you, say so what! Do not take on all the resposibilities. Enjoy life and you dont need people who put you down. Make sure y.ou take your meds correctly. Nicorette also helped my colitis. I used to smoke only on weekends when i had a drink. I had diarrhea and thought to stop smoking for my health.Good luck to you all out there, the problem is people dont understand this disease and running to the toilet and being very tired. Prednisone brought me out of a flare. Milk is a bit of a problem, have an occasional icecream. I had heamrroids internal too removed and am feeling better now.
I always had very mild colitis for 25 years, and then I quit my occasional smoking~ not even a pack a week~ and my colitis got worse immediately. The same thing happened to my sister when she quit her pack a day habit~ now she has her hands full with very bad symptoms.
Hey Sheri, did you manage to get through it. Have things settled down down there?
Im going to try and do the scd diet but there are alot of ingredients that you cant have and ive just been into the kitchen cuboards reading different labels and the majority of food has startch ingrediant in or glucose! Im realy finding it hard!! Im not eating bread or potatoe although im not usualy too bad after potatoe. I have usualy redy brek for brekfast with milk and im usualy ok. Do you think i should change this?? Please help i just dont know what to eat! And now i know your not suppose to have that ingredient im scared of eating it! :/ xx
Have you ever tried eating hard boiled or scrambled eggs for breakfast? I do that alot, and it seems to be working out great for me. I think you should for sure give the SCD diet a go. As for me, I don’t have any milk products anymore, I used to cheat and have some in my coffee, but I have stopped that 100% and I think its helping alot for me. Most people on SCD don’t drink any milk, or atlease if they do, they do VERY rarely. best ofluck with it, and keep us posted on how it goes!
I am thinking the diet connection applies to all of us who have an auto immune condition, whether UC or not. I am cutting out milk and breads. What is your take on protein powders? Mine are whey protein isolate. I DO buy the flavored kind which contain sucralose. Hmmm… But is they whey considered an allergen in same way other dairy products are?
Most people have not had the best of luck with protein powders. I myself have never tried them since getting diagnosed so I don’t have any first hand experience. If they are working for you, great, if not, I’d consider making a change and substituting for something else..
Is a colonoscopy the only way the tell if you have UC or is there other ways before we take that step
Colonoscopy has traditionally been the gold standard, and even more than that, a colonscopy with biopsies taken(which is very very normal and nothing to be scared of) which is then followed up with pathological exams by specialists who get the microscope out is all that I have ever heard of for a conclusive diagnosis. With this said, there may be some other options that the medical world can use to judge/guess etc…if someone has UC, but I’m not aware of that/those ideas. I wish you the best no matter how you move forward(or whomever you are thinking of),
Hey!! Thanks for the breky tips! Ive been doing it for 3 days and have began to get realy hungry! And some times stomach ache! Is this normal? I spoke to the ibd help line which my doctor had gave me and when i mentioned this specific diet she hadnt heard of it. Its so confusing my gaestronoligist told me to have a healthy balanced life style and to have potatoes and veg etc. Im thinking of doing a food diary and trying to pin point the different foods that give me an upset stomach. I dont eat much bread or startch anyway but i am usualy too ok to eat potatoes. I realy wish i could have a normal digestive system people take it for granted!! Its putting me on a downer! Everyone else seems to manage on this diet! Xx
I have had UC for 15 years. I thought I knew what it meant to live with UC, but I really had no idea until this last flare. Things got out of hand when I got pregnant and and continued to spiral out of control after Mickey Jean was born. She is now 15 months,and I just got realeased from a 3 week hospital stay. I have been on prednisone no less than 35 mg and up to 60 mg doses for over six months now and two weeks ago I had a scope done that sbowed very liittle decrease in inflamation. I have also developed pyadirma with this flare up and have skin lesions breaking out all over my body. I am so afraid that I am going to be faced with surgery and I cannot wrap my head around that as an option. When I got home from the hospital my mother and my husband informed me that I am going on the SCD diet and I am scared enough to try anything at this point. I am praying this works, as I havenot been able to take care of my own childern, my house, my husband, my life for almost a year now. I am so tired of my body hurting me. So many positive stories related.to this diet give me hope. Thank you.
Hey, hang in there, I know almost exactly what you are talking about/going through (minus the having kids part as I’m not there yet.) but most definitely i hear you on worrying/thinking about surgery. I was having meetings with the surgeons before I tried the SCD diet the first time.
I wanted to ask you a question though about the skin lessions, because I had those too when I was in the middle of trying all sorts of medications. Did you take Humira or Remicade infusions for your UC? Reason being, there was a recent study published, that I posted about on the website about a small percentage of IBD patients breaking out with psoriasis type lessions after taking those types of drugs. Anyways, just wanted to throw it out there if it might be the case for you, as it was for me. I have another post somewhere with pictures of what my horrible looking skin looked like at the time, thankfuly, it has all cleared up and gone away for the most part, minus some that is still on one foot. Keep me posted, and best of luck with the SCD diet! I wish you good success like so many others of us have had with it!
Hi Elizabeth, new to this website, I too got pyoderma after a bad flair, not too many people know about this horrible disease, hope you are ok
How are you doing? Have you started to feel any better? I really hope so!
I have had UC for 27 years and at one stage was on 33 pills a day + enemas .Now I am down to one tablet a day which is for acid reflux – this is a side effect of taking high blood pressure pills .I have gradually stopped bp pills and it is normal .I have been veggie for years and since last year been 100% vegan and my health has improved enough for me to go to uni and do a complementary therapies degree .Energy is coming back ,joints don’t hurt ,no flare ups – just the odd upset .As I am intolerant to potatoes ,wheat ,tomatoes ,and grapefruit I avoid these most of the time and eat fruit ,vegetables ,brown rice ,seeds ,soya yoghurt and soya milk ,sweet potatoes ,quinoa , amaranth .I also use lots of essential oils ,give and receive reiki ,take flower essences and life is so different to those dark days of spending hours in the bathroom ,scared to leave the house ,totally exhausted .There is always hope and if we listen to our bodies they give us messages as to what they like and dislike .Love to everyone
Thank-you so much Pam for your experience strength and hope. My Doctor thinks I have SC and is sending me to a specialist who I see next week. Have been suffering a flare-up for about two weeks. Taking antibiotics that I think are finally helping. I like Adam and many other suffers don’t want a temporary fix. A nutritionist at my health food store told me you can heal yourself one day at a time through diet. Can you tell me what you have for breakfast being Vegan??
Thank you all for your comments and advice. I no longer feel alone. I see the connection between quitting smoking and colitis. I am recovering from my third bout with colitis. I have gotten a little of my strength back. I have not been given any medication except for an antispasmodic stomach pill. I am trying today to eat just a little bit all day. I am so thin that I’m sure I would feel better if I could eat and experience not experience cramping and if I could go back to the gym. I am just not there yet. It is a real challenge to discover that food I can eat. For me, it might be grilled, baked chicken and fish. I don’t know of much else – scrambled egg and sometimes biscuits. I ate a pancake and a scrambled egg and it has settled pretty well. I ate a half of a banana and next will try a soda cracker.
And…here we start! I have been diagnosed with UC on Monday and now I am in the process of building my new diet. Thanks A MILLION for your advices, sir!
First off thank you very much for putting up this website. It helps us all feel as if we are not alone. I was diagnosed 3 years ago with UC and had not much luck with Asacol so I had to switch to Imuran. Me and my husband are wanting to have kids soon so I decided to completely change my diet and lifestyle so I could not be on medication since Imuran is not recommended. After 5 months of success I am currently flaring. I feel the cramping, little blood in stools and I go to the bathroom 2-3 times per day. I don’t know what I should do now. I don’t want to go to my doctor because he will just say its because I am off the Imuran. Basically that would mean I could not have kids. Do you know what drug would be safe for pregnancies or someone who has taken a medication being pregnant. I can’t really try to have a baby during a flare either so I am really torn about what to do. Please help anyone!
Hi all I haven’t been diagnosed yet with uc as my doctor thinks it might be ibs but I can relate to some of your posts. I’m finding it difficult to know what foods to eat as when I suffered from ibs I could eat oats but now I can’t. Caffeine appears to irritate my symptoms a lot even in hot chocolate! Alcohol I think also but we have been invited out to the pub next week and worried about what to eat/drink obviously safe option is water but I can’t have that on someone’s bday celebrations? Also I was wondering if any of you are affected in regards to going for a pee more often or getting the urge to? And do crackers irritate many people I.e. Cream crackers like Jacobs?
I have not heard of people mentioning the need to pee more due to UC, however, with UC, pretty much anything is possiblee. As for crackers…I’d stay away from them for sure. Grains are not a very good idea in my opinion (which is why I’ve been off them for 5 years now:)
I find probiotics are helpful as they are meant to contain good bacteria. Yakult and fage Greek yoghurt although the later I suggest eating with something else – bit sour!
Wow.. This is site is amazing! So great to read other people’s experiences with UC, I know I am not alone. I was diagnosed 2 months ago, after several months of bleeding and loose stools. I would be running to the toilet every hour, loosing a lot of blood, and being so fatigued. I am a student at university and it made studying and overall life extremely hard. I started on Lialda and about a month ago switched to Asacol. I have also been on the SCD for about a month (quite strictly) and can happily say I am symptom free. Although I have continuous beige colored mucous that comes out throughout the day (have you had experience with this?). I don’t know whether to attribute my remission to the medication or the diet however. I don’t like taking the big horse pills everyday and am eager to get off of them and just continue on the SCD…. I’m scared that I will get a flare up again though. I went to a homeopathic doctor and he recommended I take Boswellia, a natural anti-inflammatory, in substitute for the Asacol. What do you think? Ease off the medication? What has been your experience once getting of the western meds?
Has anyone used the McDougal diet (plant based diet) to curb their UC. I have a freind who is really encouraging me to do this.
My 7 year old has UC. I believe she is starting to have another flare after lowering her meds. I can tell because her gas she passes is extra smelly. I started her on a gluten free diet and now cut a lot of stuff out like bread and some fruit but she wanted Udis and some gluten free cookies. So I don’t know if it was because of lowering the meds or the carbs. But why smelly gas and poo?
Just about impossible to say. The smell and color of things coming out can often change radically when symptoms come up, but hopefully, things will change. As far as gluten free cookies, if that’s what the label reads, they are probably not SCD legal foods, as grains in general (gluten or not) are not allowed.
Diagnosed December 2012 and have checked off 5 ASAs, Rowasa and sodium butyrate enema’s, and Remicade so far. Only prednisone works, so off and on that to calm down symptoms when they return. Will start Symponi next. My question to all is, how soon after food intake do you feel a negative effect? I understood that it takes 24 – 30 hours to discharge our waste, but how soon after food intake do you think, viola! And rule that food out of your diet? Thanks.
Great question Teddy,
I remember asking my first GI doc who I was with for over a year the same question about foods and how long it takes to digest. The answer he gave me was quite a bit different than you wrote about discharging foods, he said within 8-12 hours typically.(Still seems strange since I’ve for sure gone longer than 12 hours without pooping before…but anyways)
I don’t think anyone can conclusively say that within 24-30 hours you can rule out with certainty that a particular food causes you harm. Instead, I think several days of testing with a particular food while not changing other variables such as other foods you commonly eat with no apparent issues is a better way to go about it. What can make this investigation perhaps a bit more challenging is that some foods our body may not tolerate well at a specific time, but days/months or even years later our bodies may do perfectly well with a certain food.
But the show must go on, I’d take several days with a new food to help the decision making process. Best of luck to you Teddy!
Adam, thanks for the reply. I actually have some mind-blowing news to share (at least for me) that I hope is not premature, but am passing it on for however you think it might help others whose diagnosis was/is “indeterminant” UC. After the onset of symptons over 2 years ago, and going through the treatment modalitities above, I started backtracking only to realize a correlation between symptoms and dental retainers (invisalign), which I wore virtually every night for the past 3 years until about 2 weeks ago. The first day after NOT wearing them I had a marked improvement in symptoms, which continue to improve. I am at the point where I clearly still have some proctitis issues, but it may also soon be clear that they are not related to UC! I’m having completely normal days for the first time since the end of 2011.
Now, I was not able to find much (only one useable reference)that ties proctitis together with plastic or polyurathane dental retainers on the www, but that may be because I have a unique, otherwise non-measurable intolerance that just does not show up with many other people. Nonetheless, I pass this on in the hopes that others may benefit from my experience. I’m still considering how else I might get this word out. In the meantime, my heart goes out to all those that truly are sufferring from this dibilitating disease (indeed, all IBS/IBD sufferrers), and that I have sympathized with over the past 2 years. Please keep up your good, uplifting work for them (and you).
I am 70 years old and have had colitus for 28 years. I also have Parkinson’s. I play tennis three times a week,
And I have never gotten sick on the courts. Well here is the problem. I want to go on the scd diet, however I
Keep eating junk, and can’t get started on it. The more I say I want to start, I indulge even more.
What do you suggest?
What you’ve mentioned is quite possibly the most common problem, and it is not one with a simple solution. The desire to try something 100% can only come from within the person who wants to make changes. I’m guessing your UC symptoms aren’t as severe as mine were (but that’s only a guess) because for me, the desire to get better finally, far outweighed my desire to continue to eat foods I’d always had in my previous life. I don’t know what to say other than I wish you the best, many people have been where you are before and found great relief with SCD eating, myself included, hence the reasons why I started this site and spend 3,000 hours each year maintaining this. Best to you,
I just got done reading your book and I can’t tell you how many times your story had similarities with mine. I was diagnosed with UC in late 2011 and had two great years medication free until it’s violet return February 2014. I made a huge leap from Lialda to Humira this summer and it’s terrifying to say the least. I’m currently in a bad flare that I would like to attribute to my half-marathon training I was trying to do (only made it to 11 miles and I think I’m throwing in the towel on the race). I just felt terrible after every run and I know I shouldn’t put my body through this. I just started Entocort in addition to the Humira, but I am eager to begin the SCD-Lifestyle to hopefully get off some of these meds. I was curious about caffeine and on-to-go snacks. I’m a student, so I rely a lot on caffeine during classes to keep me awake. Do you drink caffeine? If so, what do you recommend? Also, what are your go to snacks that you carry with you? Thanks for all of your help!
Great question on caffeine. Kinda funny you’re asking right this moment because as of yesterday, I’ve gone about 28 days now with zero caffeine which is not usual for me in the past 5 years since starting the diet. But, I’ve been thinking about kicking it completely for some time and decided to finally give it a go since I’m back in school (after 15 years off…) and wanted to prove I could make it through the day without it.
So…that said…you’re probably wondering how the heck that’s possible right…Yeah, I was kinda doubting it was possible too since previously I was drinking mainly decaf coffee for my first few years on SCDish eating, then I moved back and fourth between regular and decaf coffee. Previously I was drinking 1-2 cups per day, no milk, no sugar except for honey, and I tried to make the coffee relatively weak. Starbucks coffee was too much for me, so I would usually make my own at home with a french press and again it was often much weaker than what my wife would make for herself for example.
The problem I would somtimes run into with coffee came about in the mornings. You see…there would be times when I’d wake up and want a coffee really bad and I’d end up having two cups BEFORE eating anything… And, later in the day, I’d realize via the bowel movement changes and just not feeling as well that having coffee in the morning before any food (especially more than a cup) was a BAD idea….
So, if you are going to have coffee in the morn…I’d suggest having something in your stomach prior. Coffee is pretty high on the acidity charts, and I think its too much of a body shock unless there’s something else in there.
If you are wanting to try and kick the coffee, I’d suggest changing over to ginger tea (fresh ginger and throw in some squeezed lemon and some honey). And maybe some fresh mint if you have access. (It’s pretty awesome and I have been making one EVERY morning for quite a few months now).
As for snacks on the go. I have been doing a banana for a snack many days and I think it works great in between meals. Also, small salads in tupperware with something like chicken, maybe some strawberry slices, and a honey/mustard dressing…That kind of thing goes well for me. Just for sure, stay away from the vending machines at school. I don’t think there’s anything in there that’s good for us, especially the candies, definite no-no there in my opinion.
I hope the best for you Lacey, and I think its a good idea to throw in the towel (for now) on the race deal, especially if you’re flaring. Let your body recover, and for sure there will be plenty more races in the future.
Best to you,
Had the first colonoscopy today..
This forum is such a blessing. Thanks people.
I have now done this diet for over a month now with military precision and have had zero results. I am starting to believe that this diet isn’t going to work for me as it has for so many people. It’s impossible to know what foods trigger a problem when you can’t stop the problem in the first place. I am happy that it is working for you but even Elaine said that if you aren’t improving in a month this diet isn’t for you. How long did it take before you noticed a change?
I’m sorry to hear you have not had any luck so far. And one thing is for sure in that this diet does not work for everyone in terms of controlling symptoms. So don’t feel like you’re the only once because you’re not, and over the past 5 years I’ve heard from several people like you who have gone about things this diet changeover in a full on effort type of way with little/no positive results.
I myself started seeing positive results within just a few days. Please realize that when I initially started the SCD diet, I was also on a mild prednisone taper, so that may have been a positive influence on things. But, also please realize that I have had a couple of flare ups in the past 5 years and I’ve controlled those with going back to basics on this diet and that has allowed me to get things back under control.
No matter what decisions you make moving forward I wish you the best of luck with regaining control, and I’m sure you will.
Happy Saturday everyone. I was diagnosed with UC and Diverticulosis and Diverticulitis in 2001 right before 9/11. I worked in Tower 2 and lost a brother-in-law and several acquaintances and former co workers. I had just moved to New Jersey and the commute was then about an hour and twenty to an hour forty each way. My father developed medical issues and I was tasked with getting him back and forth from a NY hospital, getting to work, getting home, waiting for the authorities to find my brother-in-law’s remains and negotiating the physical and emotional devastation of the area. My UC flares got worse and worse..no wonder right. I was hospitalized twice in 2002. The commute increased to 2 hours, now it is about 2.5 each way. It is a HORROR.
All the sulfur meds prescribed caused diarrhea and ocular pressure, the retention enemas worked for a while but I can’t tolerate the discomfort. So what helped me? I’ll give a small list:
#1. Prayer. As a Roman Catholic I received great comfort and healing through the Holy Sacrifice of the Mass, Confession, through the Charismatic healing prayers of joyful praise music and thanksgiving and uniting my sufferings with Jesus on the Cross. It is truly amazing. I had many people praying for me and over me including my wife. The laying on of hands and prayerful intercession are so healing.
#2 Prednisone is a miracle drug and was the only thing that helped me (until recently).
#3 Bing cherries… a lot of them. The red in the cherry is an antioxidant.
#4 Avoiding whole milk.
#5 Avoiding stress… impossible lol.
The gastro doc recommended that MP6 drug – I think that’s what it was, a cancer drug, I said no. The med’s side effects can cause more problems than they solve. What is amazing about this disease is that there is not one solid fix for any one person. We are all so complex and what works for one doesn’t help another. This is a great web site, thank you Adam. It helps me see patterns as to what we all suffer, why, when and what helps. Training yourself to keep positive is a main ingredient in healing. Not easy to do. Prayer helps me a lot to stay positive. I keep focusing on my blessings.
I was in complete remission in 2009. The last colonoscopy showed no uc. That was the last time I had a visit with the gastro guy. My uc has been flaring since last December 2013 and has reached a point where I am now in the can’t leave the house without being near a bathroom in a pinch. It is stress related. My DO put me on prednisone and is sending me to a new gastro guy. I am now scheduled to see a new gastro guy in a few days and not looking forward to it. I am almost finished with the prednisone but I am still showing small amounts of blood showing as light pink mucous, frequency and urgency.
Lately chicken soup has really been great for me along with hamburgers and grilled cheese. Here is my mother-in-law’s recipe. This is the best. I put in pasta because it doesn’t affect me. Plus I have been drinking plenty of cherry juice, iced tea and water.
Netty’s Chicken Soup
Prep time – 7 minutes
Cooking time – 90 minutes
Serves 4 – 6
1 cut up chicken
5 stalks of celery
5 carrots peeled
Salt and pepper to taste
1 large onion
12 cups of water
Place all the above ingredients in an 8 qt sauce pot and bring to a boil on high heat, lower heat
and simmer for 90 minutes stirring occasionally. Remove chicken from the pot and let cool.
When cool, remove skin and bones and shred chicken meat to be added back into pot later.
Remove carrots, celery and onion and in small portions with some broth liquefy the vegetables in
a blender (be careful not to overfill the blender with contents – use a ladle full of broth to help
liquefy and use a towel to hold cover on top as heat sometimes will cause the cover to pop up
and make a mess). Strain broth for any bones and then add the liquefied carrots, celery and
onion along with the chicken meat back into the broth and serve with your favorite pasta.
I am praying for all of you and your families. May the Creator and giver of all good gifts heal each and every one of us soon.
Thanks for this site. I dontnhink I have ic, becauwe I dont have blood in he stool and have a history of pancreatitis…but I have chronic diarrhea, fatigue and other similar symptoms. He traditional medical community has not been much help. One, like you mentioned, the industry is driven sell tests and pharmaceutical, but at least I have a family doctor whomisnr into that. I know something is wrong, but because it comes and goes and doesn’t always pick up on a blood test, I get blown off. Ive had food allergies since I was akid, andi see where lactose intolerance and celiac get worae as you age. Hmmmm….. coincidently one of he times I felt best stomachwise was when I was prescribed prednisone for plantar facitis. Hmmm again
I was thinking about engaging a dietitian and or chiropractors to help be solve yhis misery a little more wholistically. The dietician because I am just food pryamid dumb, and the chiropractor, well has anyone had any experience here?
Its so relaxing to find a site where “poop” can be discussed. I once was on a comute into town when he uhoh moment hit and I oulled into the bank lot, the only store off the diagonal, and the guy didnt want to let me use the restroom. Im holding a squirming toddler, im sweating and trying not to cry, fortunately the lady let me use it. But its yhat attitude of people yhat just cant comprehend how an “upset stomach” alters your life. Another time, waitinf for a shuttle bus from airport parkinf to terminal….I couldnt wait. My apologies to the lightpole and the returning passengers if it didnt rain. Living rural, I cant count rhe times ive had to jsut stop while taking my kids to soccer, etc. Amazing it doesnt bother my teenagers.
Looking for some answers. I have been experiencing irritable bowel symptoms on and off for about 10 years. Only seemed to bother me when eating spicy and greasy foods but really no specific food. Cut to April of this year and I began having bloody stools. Needless to say I freaked out and had to have two blood transfusions and was in outpatient care for a week on fluids, steroids, and antibiotics. Had a colonoscopy and it revealed Inflammation of the intestines and deep ulcers. My dr said I needed to start Humira right away which I did even though I had never tried anything else prior to this episode.
Cut to 6 months later I just had another colonoscopy and the ulcers are still there but much better and only in my upper right intestine. Dr said its Undetermined Colitis or IBD. I was told prior to this it looks like Crohns. So as you can imagine its very confusing. I actually think I’ve been more sick while on the Humira. Its hard to say since I started it right after the initial flare. I had a nasty sinus infection that I didn’t even know I I had for weeks because I had no symptoms. now I feel like i am getting sick and am due for my shot and wanting to skip it. The Gastro dr says try an anti inflammatory and go off of Humira and my gp says stay on it for another year? Btw-I am in Germany so my gp handles everything over here…only see the Gastro for colonoscopies. Haven’t changed my diet mainly because I wanted to see how well the humira is working. Any suggestions or thoughts are greatly appreciated. Thanks!!
My thinking if I was in your shoes would definitely be to make some diet changes. Right now, if you stay consistent with your medication program that you are doing but change up the diet. It might give you a chance to find out if there are any positive benefits from the diet together with your meds. If you’re feeling better than you were before the meds, that I think is a good thing right?
And if you do meds and diet together and feel even better…that’s pretty good too.
if that is all the case, then you might be someday thinking…heck…maybe try the diet alone and see how that goes. That’s my thinking.
Let us know how it goes, and I apologize for my late response to you here with your question. I’m usually way better at getting back to comments, and hopefully some others may have some ideas to this too.
Wonderful web and I enjoyed your humor. I have had success with the SCD with my son. Sometimes there are no short cuts to food.I believe Elaine G expressed, “Better to live in the kitchen than on the potty”. Train the brain to think differently, it takes time but people are so very creative and determined like you.
If any whom are on a special diet and still experience problems, you might consider this.
There is newer information concerning food aside the most common GMO and every kind of chemical used on our food for what ever reason, the addition is MSG. It is not just a Chinese flavor enhancer. It happens to be in over 90% of our food and the last I understood GMO is over 70%. What a mess.
Getting chemical free is an undertaking that can take several weeks but the out come is wonderful.
MSG is not labeled as msg or as some food companies label “no msg” they are far far from the truth.
The thinking is that ingredients should be just the product and if you do not understand what you are reading then leave it. Food companies often change ingredients ( chemicals) for cost savings to them and the source of infraction can be difficult to track. One might be able to buy that gf,organic frozen pizza but all of the sudden will start experiencing problems and not understand the source.
An important start is to take pleasure in the kitchen and accept that cooking takes time.
No canned goods, they are sprayed with chemicals and not correctly labeled.
Stay to whole foods and learn to cook simple. It’s a pallet change but once you adjust nothing else will impress you.
Use work weekends or time before or after work to focus on meal planning, also if you make larger batches of food you can freeze small or individual portions that will help for quick grabs.
Google Dr Katherine Reid you can watch and use her printable list for 50 msg food ingredients to avoid.
Thank you so much for your website, not only do I find it humorous but informative. I look to order both of your books and I’m very excited about it. Nine years ago I had a normal colonoscopy four and a half years ago my colonoscopy showed ulcerative colitis and last week it has progressed to pancolitis. Pancolitis is very rare because I am in my 60’s this disease usually happens before 30 years old.
This past year has been total stress in that I took care of my mother who passed in August so I’m in the process learning how to live without stress.
I experienced frequency and blood but I do not have the frequency your readers describe. I can go 5 days between movements. I am in total fear of pancolitis but often results in colon resection and can lead to colostomy.
I certainly am going to try and live by your diet and hope that it makes some changes in my life I do want to add that the first thing I did was get rid of milk and milk products and I’m drinking lactaid and it does not upset my stomach.
I can only hope that I’ll have something positive to add that might help some folks in the meanwhile I will look to you to give me tips and ideas on how to improve my life thank you for being a lifeline for so many.
I just came across your side when I searched the Internet for natural help to stop the bleeding. I have colitis since I was 17 I’m 43 now. In the first few years it was treatable with suppository salofak then I was on and off medication. Also cortisone which was the worst experience. I felt always a big pressure to go somewhere in public always on the look out for restrooms. Not having control and always running to the bathroom and not making it on time was pretty devastating. Only my close friends and family could understand other people and coworker would look at me and say you don’t look sick which was again pressure on me. 3,5 years I been a patient of a natural healer I changed my diet and not taking any medication anymore since 3 years. I started with avoiding sugar, milk products and ending up to eat a most plant based died which I felt worked best. I could make sometimes exeptions and all worked just fine even thou doctors always told me I have to stay on medication the rest of my life. But I can’t lie I love food and since I was doing so good I said I could make exceptions on Christmas. Well this turned out to last till 6 January and I noticed that I had more gas and few bleedings. On top it was really stressful at work and at the moment my colitis is very active with allot blood. I really don’t wanna go back take medicine but it seems to be really hard at the moment because the bleeding won’t stop. I read in your article about avoiding any grain that never crossed my mind because I’m a big bread eater noodles potato rice and so on. I never felt that could be bad for me. I do drink everyday a green smoothie which i think it’s good because there is no problem with digest it. I think the stress triggered my colitis to finally break out again. Can you suggest me what I could try to stop the bleeding please. I’ m fine during the day most I hve to get up in the night because gas is bothering me and in the morning from like 5-10 am this is were I’m running all the time. So it would be nice to hear from you.
It sounds very possible that the holiday season, eating some things you don’t usually, along with stress very well could be the combination that has you where you are at currently with your UC. We’ll never know for certain, but definitely possible. But, don’t stress it, it can call turn around.
Yes you are correct, I don’t eat any grains, and nearly all of the UC’ers how have decided to go that route are very pleased with that elemination element of the dieting ideas I follow. Grains include cereal, oatmeal, breads, rice, gluten, even no gluten things. Beer…that as well is in the “grains” group.
What I would recommend is for you to take a look at a video I produced a few years ago. It’s been watched by thousands of UC’ers in your position with active flares, and it documents EVERYTHING that went into my mouth for a full week, which led to my symptoms getting better. I hope it gives you some clear ideas into how I handle colits flares:
Hi Adam, I love your site and your attitude!!! I am just wondering about coffee? Is that bad food? Thanks
Cool Stuff!!!…..I always knew that my digestive system have gone weak and cannot digest lactose but it was my cravings for the chocolates that lead to flareups. Anyway which drink is safe to have i mean alcohol????
Everything within limits right…but for me, and quite a few others, Vodka on the rocks followed by a glass of water, and back and fourth seems to be a good plan that I follow a few times a week lately without any problems.
I’d for sure stay away from beer, and white wine, and for sure other stuff that has lots of sugars (those drinks you put in a blender with some premade mix…I never dare play with those guys)
Since i work on cruise ship i cant escape completely from the crew bar parties…anyway your SCD diet with mesalamine 800mg had worked wonder for me in the past….but after getting wrong vibes that i finally got cured of colitis i started with all the high inflammatory food list with milk and alcohol being the biggest culprit and the result is for the first time i cant seem to get in remission…for my diet i have included egg whites, turkey, fish, and kiwi fruit(should i exclude fruits?) + measacol 800mg. …..this are the only things i eat whole day long….but i am still not in remission and have blood and mucus twice a day…..Any feedback from your side will be highly appreciated in this matter as i still have 3 more months to disembark from the ship and feeling little bit helpless on-board.
What up D,
Yes sir captain, I’d cut the fruit if I was you. And I’d try to party with the rest of the crew with just some bottle’s of the ships finest water. Come on man, if I can do it on a rinky dinky sailboat for 6 months…you can do it on a massive cruise ship. Cheers and let us know how it goes, Adam
Sweet!!! I will definitely let you know…..Ciao
The best I ever felt was wen I ate a vegan diet for 2 years. I drank during that time, and had no symptoms. Now I am having a bad flare, hospitalized for panceraitis an on a liquid diet for 5 days. The nutritionist said low-fat low residue diet. GI said Bland diet. I’v been eating pretty much rice, eggs and mashed potatoes. my husband and I decided to cut out meat again to see if it helps (veg, not vegan. I eat my chicks eggs and i eat greek yogurt). I also started back on 40mg prednione at the same time. I am interested in the scd, but I can’t figure out how it can be done with no meat, and soy (tofu). It would b pretty void of protein. But if going veggie doesn’t help I will give it a try for sure.
Ulcerative Colitis is an elusive disease. During the flare-up no body can control it without steroid, but one thing which is very much true that is we should control ourselves by strict discipline of diet and lifestyle. I am suffering from this disease since last 30 years.
I have taken it now it very easy. During flare up I maintained a diet of of simple nature –
I start my day with a bowl of curd with one spoon honey. One hour I don’t take anything.
Brown rice with green Papaya boiled.
Sugar intake keep minimum
No spicy food. No fired food.
Small quantity of broiled chicken once in a week.
vegetable of soft nature
Defcort – 6
Yoga – Surya Namaskar
I am happy with my life. Hope those you suffering from this disease may overcome their own hurdles by self care.
Does anyone have any smoothie recipes ? I’ve made the coco colitis smoothie for my husband and he seemed to like it and it seemed to do well with him! Just looking for something different to slowly add in to his diet.
Adam I just got out of hospital after major flare up of uc.It also ran my sugar way high and sent me into afib.i am on a walk down script of prednisone.have not healed yet better kinda getting better. I used to be 480lbs but through diet and exercise am down to 300 and heading to a goal of 240.i am very encouraged by what you have written,however at least for now I have to watch my sugar as well.because of this How should I modify what you have laid out.i also have diverticulitis so gotta be careful about nuts and seeds.any info you can provide so me as I am just getting started would be great.thanks for what you do.
Congrats on the weight loss, and I hope some serious improvements can be made with regards to your IBD as well in the near future. As for sugars, I limit my sugar intake to sugars from fruits and also from honey, and that’s just about it. So compared to the normal person, I for sure take in waaaay less sugar. And for several years now, this has been great for me and my UC. I hope the same goes for you and many others who are looking towards diet changes to get UC under control.
I was diagnosed with UC when I was 20 years old…I’m 28 now. I’ve been on prednisone for months and for the first time ever my flare actually got worse while on it resulting in my need to raise my dose. I was on the SCD diet when i first flared (not knowing what the diet was) and people told me I was glowing, Once I got over that flare I haven’t gotten back on it because i found it too difficult to keep ( i eliminated ALL dairy and carbohydrates – with the exception of berries). However I am going to start the diet again now with hopes that i will have the same luck. The only difference with my current flare from all flares in the past is that i now have hemorrhoids, a fissure and EXTREME diaper rash. I don’t with this pain on anyone. I let me disease get out of control because i refused all medication while pregnant.
If anyone can post on natural homeopathic remedies please do!
wish me luck!
Good Luck Michelle, and I hope you have seen some improvements or even better complete resolution of the symptoms since you commented. If you go to the site map page here:
You can see all the different sections (or on the site their called “categories”) of the site. One sections is called alternative medicine, and if you click on that link, you’ll see about 70 different stories you can read.
Wishing you well, and thanks for posting,
Thank you so much for this awesome website !!!
I was wondering if the Cheddar Cheese and Coconut are allowed in the SCD ??
Thankssss so much in advance
I was diagnosed with Ulcerative Colitis in May 2014. I started the SCD diet in August, on a strict intro diet. I eventually recovered for a serious flare, however over the past year I have been getting minor flares here and there with increased mucus and blood. When I get them I retract back to “safe” foods, meaning no raw veggies, mainly just steam veggies protein, SCD yogurt, chicken soup etc. The problem is that I feel I have been in limbo with my diet a good proportion of the whole year. I will get a flare and then slowly reintroduce food, yet to be set back again with another flare. I feel I haven’t been able to eat the variety of food that SCD has to offer. My question is, when you have a relapse does anyone retract back to intro/phase 1 food? Or is this only necessary when you start the diet from the get go? SCD is restrictive but my diet this past year has gone even further beyond that! I am currently in another minor flare and getting super frustrated with the daily ritual of steaming zucchini squash and carrots – which is what I have been living on for ages.
I think it is a great idea to go back to super basics like the intro diet. I myself do a modified version that I’ve written about and shown in the colitis beatdown video, but yes, I think going back to basics is great almost whenever symptoms appear.
I was diagnosed with UC back in July 2013, and I always ate well even before I developed this condition (which makes me wonder how it ever happened). Luckily for me, I have never once had a flare after being put on a taper of prednisone and Asacol HD (1 pill 3x’s/day), but I have gotten to the point that I have tapered down to 1 Asacol HD pill/day now (and planning on going off of it entirely soon).
I have supplemented with l-glutamine in the morning, kefir, greek yogurt, fruit, veggies, soups, raw honey, cinnamon, nuts, coconut oil, steel-cut oats, chia, ground flax, hemp hearts, eggs, kimchi, salsas, fish/seafood, and a supplement consisting of boswellia, devil’s claw, and turmeric (with black pepper extract of course!). Before I go off of the Asacol HD entirely, I am going to add one more supplement to the equation: slippery elm bark (probably in powdered form) AND maybe a spirulina/green drink mix, just to be safe.
I hope this gives people hope that they can wean off of the meds that can have serious side effects over time. You must be diligent about what you do AND do not eat though. I can test the waters safely with things like chicken wings (cooked in peanut oil) & some types of pizza, but if I know I’m going to eat those types of foods I make sure the rest of the day is by the book with nothing but the good stuff.
Here’s to healing with diet!
I like others have tried a variety of things, I couldnt get on to the SCD simply because it was too restrictive, I had some success with FODMAPS diet although this is more for IBS than IBD, it has some similarities specifically low refined carbs, wheat and dairy.
Ive been through a bad patch recently which I attribute to stress from home and work and training for endurance events. I tried increasing my meat and fat intake to make up for the low carbohydrates during training and I think perhaps the fats have been an issue in causing this big relapse. I used to have a lot of whole nut peanut butter (no sugar) and mayonnaise (sugar).
I will eventually re introduce ‘healthy’ fats such as extra virgin olive oil and fish oil (I dont bother with supplements I just eat the fish such as tinned mackerel and sardines), but for now Im keeping it to a minimum.
I do like the carrots and courgette meals and boiled chicken. Ive also been having protein powders to supplement my diet as Ive lost 4kg in 3 months – Brown rice protein powder and Hemp protein powder as I am intolerant to milk proteins. Theres also a powder called super greens which is powdered veg and things like spirulina and wheatgrass which I add to my drink to add nutrients without bulk/fibre.
Im also going to try a low sulphur diet – sulphates are often used as preservatives, and come from food sources such as red meat and eggs.
As for supplements, Ive tried a lot of different ones.
Im currently trying out Butyric acid (butyraid) and N-acetyl-Glucosamine which is meant to be the easiest form of Glucosamine to absorb.
Slippery Elm powder is on the SCD bad list but its not caused me issues and I think it helps.
As I have smoked a little in the past I have tried smoking, snuff, nicotine supplements, but none of them helped me at all.
Prednisolone foam enema has been my saviour so many times, its just a shame I need it still.
I am a 28 year old female, who lives in South Africa and I was diagnosed with UC about 2 months ago. I had a bad flare in 2014, but the “specialist” did not diagnose UC and on a recent holiday to NY (to see my boyfriend who worked in the US for 4 months) I had an extremely bad flare. I knew it was UC due to the fact that I have had similar symptoms before (in 2014) but you pray and wish it’s not and make yourself believe its something else (like travelers diarrhea). I have found your site extremely helpful and it is nice to know I am not alone – to read and know that someone else elsewhere in the world is going through the same thing you are. It is very difficult to talk to people about this and I think this is also due to the fact that people are not familiar and/or well informed about the disease. I have been reading a lot about diet and other things that could improve UC and prevent flares (I am currently reading Breaking the Vicious Cycle) – after the book will then attempt to follow the SCD – I will do everything in my power to ensure I get to keep my colon (even if the thought of not eating carbs scares me, as weird as that may sound). I just want to say thanks for everything and keep up the good work. As a side note I went into remission after about a week since I was diagnosed, with no hectic medication, my gastrologist prescribed Mezavant, a medication that has been working extremely well for me, I have had no side effects and I go to the bathroom like a “normal” person, I think I have been very fortunate with this medication and just wanted to let others know about it as well.
Look at the post is just listed. I’m eating quinoa and rices as well as winter squashes and I’m good. Everyone is different. The SCD may or may not work for you. It’s trial and error.
This is a constant learning process for me and I wanted to share. I am having my first flare of UC since I was diagnosed 9 years ago. I was never on meds. I controlled it with supplements and food. My first flare put my in the hospital and now I’m on Canasa and Delzicol.
I’ve been doing a lot of research and I thought this may help some. I have a sensitivity to alcohol. Can’t drink it. I had the same reaction to Kombucha and some tomato sauces, especially paste.
For this current bout, I tried both the SCD and GAPS diet, which is how I ended up not being able to speak and had loss of basic motor skills. I was dehydrated, had virtually no potassium levels in my body and it was reacting to allergens.
Here’s what I learned. I have something called histamine intolerance. It makes sense. I have allergies. Histamine intolerance is linked to bowel disease. All those good foods everyone tells me to eat? They actually make me sick. A few here and there didn’t bother me, but all at once they attacked my body.
There’s a lot you can’t eat on this diet, but they include: fermented foods (including alcohol, kombuchu, yogurt, most probitics), bone broth, cheeses, all spices (yes, tumeric) avocado, leftovers, berries, fish (unless just caught and it includes fish oil), seafoods, nuts (pure peanut butter is okay), seeds (including flax oil), most grains, ground meats, beans…well, I’m attaching a link for you to look at. http://www.histaminintoleranz.ch/en/downloads.html
So the thing is, everyone is different and those that aren’t having luck with SCD, GAPS or Paleo should take a look at this. I’m only into my third day and I feel like a new person. Antacids like Zantac are H1 histmaine blockers and antihistamines are H2 blockers which I’m taking until my body has a chance to settle down and heal.
Remember, just because someone says a food or diet is healthy or the solution, doesn’t mean it’s right for you. It could make you sick. Foods people tell you to eat and diets come and go. I remember my dad’s doctor told him NEVER to eat coconut, shrimp and limit meat and eggs because he had high blood pressure and cholesterol. See how things have change?
Firstly thanks everyone for sharing your stories… I’ve found this site to be super helpful!
I was diagnosed with UC last year. 3 months ago I started on SCD (thanks Adam for all the youtube videos). I’ve been symptom free for the last 8 weeks (whooohoooo) but in the last 5 days, I’ve started to feel very different but not the usual flare symptoms. I’ve been extremely fatigued where I sleep most of the day. Practically no energy. And have no appetite to eat foods. I can drink liquids. But when I do try eat any foods, I feel very nautious. Its been difficult to put anything down other than bone broth.
Anyone experienced the same?
Thanks for sharing. I don’t think what you are experiencing are among the common symptoms of someone who has had success with SCD eating and symptom free for 8 weeks or so. My recommendation would be to see the doctor and have them take a comprehensive blood test to see if there is anything else going on. After seeing positive improvements for nearly two months, it for sure would not be common to feel the way you do.
Hopefully some others might have some insight who have felt similar.
Wishing you the best,
My first experience with UC was triggered by the stomach flu, my boss coughing in my face while he was sick saying, “You never get sick.” Three days in the hospital and coming home with a diagnosis of UC. Not funny, boss. I was sick for seven weeks.
Now it is 2015. I have had a few more occurrences since then. I owe it now to stress as the trigger – getting physically and emotionally run down.
When my last bout happened in January 2014, I started taking Asacol, as I usually had, but this time, I had ALL side effects. I interpreted that my body was not able to utilize the med that time. Five days later feeling horrible, I stopped the Asacol and started juicing with the NutriBullet. All side effects subsided and I feel wonderful.
I hope never to be on drugs again. I believe what you choose to eat (and stay stress-free) is the answer! I hate to admit it but I eat whatever I like and as long as I stay stress-free, I’m OK. Everyone is different and staying away from inflammatory foods is probably best – not only for UC, but for any disorder/disease.
I have found alo vera to be very effective 2 ounces 3 times a day.
Hello Everyone. I’m so glad I stumbled upon this. I have had UC for years but with very few symptoms since I quit drinking. (I never drank that much,) but apparently it was enough to affect my colon. Recently I’ve been on a low carb diet, and a few weeks ago I made two loaves of bread and had 5 slices one day and four the next. My body reacted very severely to that. I went to the Dr and he found that my liver enzymes had spiked. I also had severe joint pain requiring medication; both pain pills and an anti-inflammatory. He’s sending me to the GI dr for further testing. Does this sound like something UC related or gluten intolerance/Celiac’s? He was very concerned that UC has started to affect my joints. The pain I was/am having was in the soft tissue around my joints. The joint itself really didn’t hurt when I bent them, this also progressively got worse until treated with anti-inflammatory.
I too have been struggling lately with joint pain all over. I have been on Tramadol for pain for a very long time and thought it was a side effect. I saw the GI dr yesterday and he ordered lab work including tests for RA, Shogruns, etc. These are also autoimmune dissorders that could be related
He prescribed Celebrex which I have not taken yet. Please let me know what you find. and if anyone else wants to comment on this side effect. Adam do you have a thought about this?
I love bread, and in fact tempted to eat some right now just listening. I do better though by avoiding all white flour. However, if I drink the proper amount of water eating bread does not have as much of a negative affect. This is especially true if I also avoid tea and drink water instead. When the body does not have the proper amount of water it produces more mucous since it is becoming dehydrated. Often, excessive amounts of mucous are the body’s direct response of dehydrated tissue, and dehydrated tissue induces ulcers.
Hi Adam, I am fairly new to the UC gang. I suffer fairly mildly compared to a lot of people but I do suffer. I am also a triathlete training for an Ironman and have competed previously. We are encouraged to use gels, energy drinks etc, especially in races. I wondered what alternatives you use? I have been reading about the SCD diet and wondered how you can train and get enough energy during intense periods of training. The SCD seems to stay away from refined foods. How do you manage this side of the diet?
Thank you for your questions. Great ones indeed.
As for energy drinks, gels, powders, etc…
I don’t use any of those.
I also should add that I don’t train for or participate in triathalons, and quite frankly, I don’t do any hardcore sports like that. I’m not some complete slouch, I can run pretty darn quick, and lift some heavy things when needed, but I am by no means in your type of deal in terms of athletics. Might be again someday, but not currently.
That said, I think the closest I can come to getting the type of stuff you are talking about would be through the smoothies I make.
I have posted several smoothie videos over the years on the site, but my current recipe is the following to give you an idea of what my morning smoothie workout looks like:
2 oranges squeezed with my bare hands in the blender
handful of strawberries
handful of blueberries
tablespoon or two of extra virgin olive oil
tiny bit of cinnamon
tiny bit of tumeric (many talk about the good anti-inflammatory properties of that stuff)
tablespoon or a tad more of honey
some water to help blend if needed
if i have spinac, I put that in or some chard type greens
Blend the hell out of it and away we goooo…
I’m sure you could pound a few of those a day and they would do you some good right?
Thanks you for the reply. I’ll definitely give this a try. I’ve found your website really helpful so hopefully can make some decent progress.
I’m having a crisis of faith over the diet.
I’m 35 and have been sick for 2 1/2 years, following a very severe case of food poisoning that I just never recovered from. I was on apriso and remicade iv treatments for awhile, but they did very little/nothing, so I weaned off of them. I was a vegetarian for nearly 20 years, but made the traumatic decision to begin eating meat in order to try the diet. I’ve been fully on the diet for about 2 1/2 months and urgency is down a good bit, frequency down a little (from 15-20 times a day to maybe 10-15,) but consistency is exactly the same (total liquid – I’ve never seen any blood or mucus, although sometimes the liquid is a darker color so perhaps that means blood is mixed in?) I’ve lost 20 pounds (that I didn’t need to lose) and am so exhausted all the time that going up the stairs is daunting. I sleep 10-16 hours a day (non consecutively) and I’m starving all the time, even after I finish a meal. I make myself sick eating too much, but it doesn’t help. My diet had previously been very carb heavy – I think that’s just how my metabolism works. I’m getting very depressed over the lack of energy and the obsession with food – I think about bread every second of every day. I dream about it. I want to punch people and steal their bagels.
I want to give up so badly, but I feel like the diet is my only/best option. Every comment I read talks about the ineffectiveness/side effects of drugs, so I keep at it but I don’t know how much longer I can do it, because even if my immune system is happier, the rest of me is beginning to shut down. I’ve started having problems with circulation, and my hands stop working. People talk about “seeing improvement” “shortly after” beginning the diet, but I’d like to know what that means. I really feel like I should have experienced some hardening of stools by now.
Forgive me if I missed this topic already (haven’t been able to read every single post yet). So here’s my story. I”m 43 and last July/August 2015, I went in to see my PCP for what I thought was a sinus related infection or issue. To clarify, no major congestion, no puffy or sore cheeks. Pretty much severe pain when rubbing or massaging the eyebrows. So the doc on my first visit automatically classified this as a sinus infection and prescribed Augmentin. I took the full dose and didn’t notice any difference. So upon a follow up visit for the same issue, the nurse practitioner (this time) prescribed Avelox saying sometimes the augmentin doesn’t do the trick and we put patients on the next stronger level.
Needless to say, once I completed the full dose of Avelox (end of August-ish), I began having very foul order gas, loose stools / diarrhea no matter what I ate. Going off of memory, at the time was probably about 2-3 times a day. But over the next few months, this began worsening (up to 10-15 times within a 12 hour period) to the point of going to the emergency room over the thanksgiving 2015 weekend (at the recommendation of my “new” holistic dr.). Mind you, I had no fever and if it hadn’t been for the cold that came on, I’d likely would have felt fine otherwise with the exception of the cramping pain associated with diarrhea. During the months leading to my visit to the ER, I had even tried Garden of Life Probiotics (100 billion cfu) to restore good flora along with a few other supplements (glutamine powder, omega 3/6 oil, and Boullardi – for yeast overgrowth), but these had no positive affect. While in the hospital over the weekend, the GI doctor did a colonoscopy and biopsies and diagnosed me with Ulcerative Colitis. They sent me home with Prednisone (40mg day then tapering on week 2 to 30mg, then 20mg, 10mg etc). Obviously while on the higher dose of prednisone, I was feeling pretty great and eating what i wanted and while still having mushy diarrhea, it was only 1-2 times a day.
While tapering down the prednisone, the GI dr. had already prescribed Lialda 1.2g tablets to be taken 2 tabs in AM, and 2 tabs in PM for about 2-3 weeks and then switch to only 2 tabs in the AM. This did not help.
To bring you up to speed. It’s basically been nothing but a case of one prescription to the next, while at my own discretion (as needed) keeping some small level of prednisone in my system as that seemed to be the only thing that ever helped to any degree – as horrific as it is when taken long term.
My last two current visits to the GI resulted in prescriptions for Limotim (stronger than immodium), Dicyclomine (20mg muscle relaxer) and Cholestyramine Pack (dissolve able binder). To clarify, I tried Limotim as suggested for a few days which only worsened my cramping to the point of spending twice the amount of time the restroom flushing my system. I only ever tried one Cholestyramine Pack which pretty much had the same affect. I avoided the muscle relaxer (suggested by dr that would help cramping) altogether because they generally don’t do well with me anyway.
So at this point, I came across the SCD diet and have started it two days ago and I’ve also stopped all meds except for Lialda 1.2g (4 tabs per day), and about 20mg prednisone as-needed but looking to taper that off again shortly. I have noticed some positive difference so far, but then there are sudden times where I’m surprised with another attack of diarrhea. Now I should point out that never once have I ever had blood in my stool at all.
My gut feeling is that the Avelox dose from August is the cause for all of this as its documented that it can cause diarrhea for up to several months after taking and that it can also cause varying types of coitis. I’m beginning to question whether I even have colitis and of course the GI doctor is just playing the neveredning “treat the symptoms game” to keep his patient around.
I’m hopeful introducing this diet may assist with getting back to normal BM stools again in the near future as this is very painful at times and a major inconvenience at the moment.
Any thoughts or suggestions would be appreciated.
Thank you for sharing what is happening with you (or happened might be a better way to put it) and your story is very much the same as mine in terms of getting bounced from one medication to the next. It unfortunately is a very common deal for us with UC, so don’t feel like you are alone with that whole medication dance, as just about all of us have gone through it with similar results. OF course there are the lucky ones too who have a great long term experience with medications or maybe the “first” UC medication they are prescribed, but that is not really the norm from what I gather from the thousands(actually millions) who have used this website since 2009.
I hope you get a positive reduction in your symptoms with the diet, you won’t be the first who does and certainly not the last. Keep us posted on yoru results and good luck to you again,
I feel for you. Maybe three years back I was where you are. I was on the SCD diet for ~3 months. And though I felt better in some ways, it never changed my BMs. Lost about 40 lbs in those 3 months. BMs every hour on the hour. Never getting good sleep due to this. Planned bathroom locations just to leave the house. Zero energy. Body was in ketosis (burning fat instead of carbs) which caused a gout flare to add insult to injury. Developed an abscess due to the uncontrolled UC. Was not in a good place. Unfortunately it affects people differently, so things that work for some do not work for others.
The drugs do work for me. Mine is finally controlled with Remicade/6MP combo. It took around two years for this to happen, but it finally did. I have a normal BM once a day. I have energy and can sleep throughout the night. I can tell it’s still there though, lurking, waiting to come back. Close to the time of the next infusion, I start to notice changes. Gurgling stomach. Loosening BMs. I get this weird thing where I feel like my face is sweating (for no reason). Sense of unease… sort of like nausea, but not quite. Hard to explain.
When I look back in it, I think some of the stuff I attributed to drug side effects were actually simply the inflammation from the UC ravaging my body. Not all of it, but some of it. I certainly did get puffed up from the prednisone and skin problems after stopping taking that. I cursed the antibiotic/antifungal combos each time I would get an infection. I can’t remember what it was about them, other than the horrible taste choking them down.
Anyway, my very unprofessional suggestion would be to try to work with your GI doc to find some relief through drugs, while trying to determine what foods work for yourself. Uncontrolled UC is very not good for your body long term. Keep a food log. It may help you to determine some “good” foods, that are not good for you. Between the uncontrolled UC making food nauseating and the difficulties getting enough calories due to the low cal nature of SCD, it can be rough. I mean you eat 3 lbs of broiled chicken and 2 lbs of zucchini/squash and you’re up to 326 calories. Slight exaggeration :) Also, SCD does allow baked goods using nut flours. I don’t remember the specifics, as I have not been following it for some time. Also, there is this. http://www.scdbakery.com/
Best of luck,
wow…I am going to start the SCD diet…..but I have one question….I am 17 years old boy…i had lost about 15 kgs in the past few years….if I follow the diet…my weight will gain or not….because I am too skinny….I hate that….I want to get fit…I want to gain my weight….please reply SIR…..sorry for the English…..
Most people do not start to gain weight on this type of diet until symptoms are gone or WELL under control to the point where they appear to be gone,a nd then only slowly does/can most people gain weight because there just aren’t as many carbs in this type of diet as people are used to eating.
I had no choice to get onto immune suppressive therapy because the second time I was put in hospital even steroids wouldn’t work to lower inflammation but remicade did so I will never find out if I could have controlled it with a diet.
I am glad you found a natural way though, I would have loved for that to be the case for me but I will take Remicade and the problems that come with it 10 times over bleeding non stop.
I along with so many others who have lived with and dealt with ulcerative colitis understand your frustration.
I wish you the very best nk natter how you decide to treat your UC.
If you find a treatment that brings you happiness, that is excellent!
I have been so well and I’d say cured so I haven’t been here for ages.
I wrote the Stop The Bleeding Book you so kindly put on this site. Cathy’s free Ebook to Heal the Colon.
We in Toronto had a situation around Christmas time, where a heavy rock’n fan guy we all knew in Toronto died from colitis.
He was a wonderful young man. He didn’t ask anything of anyone and just gave and gave to music. His name was Walter. He went to emergency twice for help while doubled over and cramping. He was sent home with antibiotics as the wait times were long and many were not being attended to in a swift manner. Long story but sadly he died alone.
I would very much like to change the prococal at Emergency for people with Crohn’s or Colitis. They need a new way of helping our friends who go to emerg.
What do you think? I’m thinking even some nutritional facts would help more than the meds with no help from a practitioner ie. don’t eat any grains and only eat what you can tolerate and all the restrictions when we are very very ill should be given if no one can see the patient. We have all been there and Walter’s death was preventable if help were available.
I’m thinking perhaps a letter to our medical ombudsman for our country.