I know SCD is supposed to be the cure-all, but I’ve been on it now since April, and had to go back onto prednisone, and am still in a flare now. I have tried my hardest, done the intro diet at least 3 times… this week, even, all I’ve eaten is chicken breast, pureéd butternut squash, pureéd carrot chicken coup, home-made jello made with welches’ grape juice and home-made plain apple sauce with nothing in it. I am adhering as strict as possible, but am not yielding results like I was the first time I was on the diet.
I was keeping up hope that I was getting better, then this morning, for no reason, after a week of eating this way, there was more blood than normal in the toilet! I am doing everything right, supposedly, I even removed all of my supplements from my diet for this week. I am at a loss. I want to get better without being back on mercaptopurine, but it looks like it may not work for me.
I am starting to think, “maybe the strict form of SCD doesn’t work for me. Maybe I need more fiber.” So, maybe I still keep sugar, processed foods, and preservatives out of my diet, but what if I add in fibrous foods like brown rice, home-made whole wheat bread or something. They say that that helps some people, but not when you’re in the midst of a flare, which I am.
I am getting very discouraged right now. I feel extremely run-down from eating the way I am, am miss eating out with friends (that, I can deal with if I get results, but I’m not). What I want to know is, in the midst of a flare, is there any particular foods that people might use to help them that are not SCD legal, like high fiber foods? I just don’t want to do more damage than good if the SCD has kept me from getting worse than I am. I’m not talking about adding sugar back in but what about potatoes or brown rice? I know I’ve asked a similar question before, and many people said not to do it, but I am getting desperate and want to know if it has helped anyone in any way. Maybe I should add in more baked goods with almond flour (I’ve been not eating them for about a month now in hopes that it would help me)
My colitis is very near the anus. Very low down. I only have bright red bleeding, and only a few “blobs” in the toilet and on the paper when wiping. Sometimes the toilet water gets more pink than others (like this morning—but I had some D as well, where the hell did that come from?) most of the time it’s just red blobs of blood/poo in the toilet. So I know it is very far down the colon (at lest I have that going for me, right?) I even tried the vitamin E enemas… they didn’t help either :(
I am getting depressed, stressed and saddened that this isn’t helping me. I really thought that SCD would help. I need some guidance and support and advice right about now. All I want to do when I go home from work is sleep on the couch and cuddle up in a warm blanket… that’s not doing me any good. I am so tempted to just go home and make a big old bowl of brown rice and eat the whole darned thing and see what happens. The fear of ruining everything I’ve done so far is what keeps me from doing it though.
OK, you are right to question this approach and look for a new strategy. It sounds like you’ve tried giving SCD a fair shot. I think you are very close to figuring this out.
I have some text from a book of mine I’d like to share with you about stopping internal bleeding from the colon. Feel free to email me at reid -at- crohnsend.com and I can share it with you and hopefully help you stop the bleeding and then get on to the rest of your healing.
BTW: if anyone is looking for various diets that people have used to heal from Crohn’s or Colitis the ones I’ve found are,
1. Specific Carbohydrate Diet – http://www.breakingtheviciouscycle.info/
2. Gut and Psychology Syndrome diet – http://www.gapsdiet.com/
3. The Maker’s Diet – http://www.makers-diet.net/
4. Macrobiotics – http://www.kushiinstitute.org/html/personal.html#CrohnsDisease
5. Jini’s IBD Remission Diet – http://www.caramal.com/ibdrd/ibddescription.asp
6. Raw vegan diet – http://en.wikipedia.org/wiki/Raw_veganism
Have you looked at http://www.helpforibs.com/ You may want to try to talk to a dietition too. Mine helped me a lot !
Just a note, if you do go check out the Eating For IBS diet at that link, it is very heavy in grains and sugar. The soluble fiber vs insoluble fiber information is good to know, but the fear of fats, heavy reliance on white flour and use of sugar in baking is poor advice for anyone suffering from digestive problems.
I was on that diet for 3 years and I don’t recommend it to anyone.
I also extremely disagree with this website, while fiber can be beneficial it does not address the underlying causes of digestive problems, in fact for people with minor digestive troubles this type of diet might mask the true symptoms and end up causing more damage in the long wrong (eating more grains and sugar).
Fats are natures natural remedy for constipation and are the building blocks of every cell in your body! Anyone who is stuck in the dogma that fats are unhealthy has not done their research.
I can’t offer you guidance or advice, but I can offer support…I am in the same situation as you!! It’s been over 2 months of very stict SCD for me…this actually being my first attempt at the diet, however. In the beginning, I felt most improvement mentally and a slight physical improvement n(which I like to think was due to scd). However, I have gradually gotten worse over the past month or so. Blood has increased, bm’s have increased, the D is back and all of my other physical manifestations have come back…ulcerations on my hands and fingers, severe joint, tendon, muscle pain and inflammation, ulcers all over my mouth, etc. I have invested so much time, money and will power into the scd and I am really bummed that I’m not doing well on it. I DID break it today…emotionally and mentally I needed to (probably physically too…I’ve lost a lot of weight). I ended up in the hosptial last week because my flair has been so bad. I’m now on prednisone again, and methotrexate (which is new me and scares me to death, but my rheumatologist says I need a medication that is going work and I agree…it gets so painful at times that all I do is cry, and I have a very high tolerance for pain otherwise. it’s not good for me or for my young children to see) I’m also on sulfasalazine and a butt load of other supplements and vitamins. I can honestly say I HATE taking medications but at this point I have no choice since scd isn’t helping me :( I’ve lost a ton of weight since I began the diet. I think it’s because I’ve been flaring ontop of the dietary changes. Maybe now is not the time to diet? My hubby thinks I should wait until my meds help a bit then maybe try again. I’m confused and desperate. I’m not ready to give in just yet, I still believe maybe the diet will help. ANYHOW, I wish you all the luck in the world and hope you find a solution. Keep us posted. Just know you are not alone.
Angie,
I know I commented to you in my previous post, but I wanted to reiterate just how much you aren’t alone. Your symptoms sound horrible and you sound like you’re even more discouraged than I am.
also… you’re not alone… we’re all here to lean on, talk to :) This is a great site for that!
Hey dude,
The SCD wasn’t for me as I haven’t eaten meat for about 20 years (doesn’t leave you much else) but I stopped eating gluten products – no wheat – and this has worked a treat in my case.
Usually every time I taper down the pred I get to about 10mg and the blood comes back (a lot and I get really crook). This has happened every time for about 5 years. The last time I tapered down I also stopped eating bread and refined products with gluten in them, and, the blood hasn’t come back and it’s been about 6 months now.
I really just follow my gut feeling (excuse the pun)and eat what I feel like including stuff not recommended by SCD. I eat fruit, rice, free-range eggs, hot curries and chilli, vegetables – pretty much anything without animal flesh and gluten. I also avoid “junkfood” I also drink a lot of booze (red wine) if I feel a flare coming on and this seems to help.
Currently on just 8 Pentasa a day.
Good luck to you; I hope this info helps,
Peter
In your post, you mentioned…”I have tried my hardest, done the intro diet at least 3 times… this week, even, all I’ve eaten is chicken breast, pureéd butternut squash, pureéd carrot chicken coup, home-made jello made with welches’ grape juice and home-made plain apple sauce with nothing in it.”
Unfortunately, that’s not the intro diet. There are too many vegetables and way too many natural sugars in all of these foods other than the chicken breast for it to be effective.
The Quick Start Guide for the diet recommends the following for the first 5 days:
Breakfast:
Dry curd cottage cheese (moisten with homemade yogurt)
Eggs (boiled, poached, or scrambled)*
Pressed apple cider or grape juice mixed 1/2 and 1/2 with water. See, SCDâ„¢ Legal / Illegal List for more information about allowable juices.
Homemade gelatin made with juice, unflavored gelatin, and sweetener (honey or saccharine)
Lunch:
Homemade chicken soup
Broiled beef patty or broiled fish
Cheesecake
Homemade gelatin made with juice, unflavored gelatin, and sweetener (honey or saccharine)
Dinner:
Variations of the above
As you can see, no veggies or fruits, other than some diluted juice.
hmmm, Comfy Tummy.
I must have missed all of that the third time around. I’ve gotten so used to eating just SCD that I figured the applesauce and the butternut squash would be ok for the intro diet since the pureed carrots are in the soup.
Maybe I’ll try again in a week, (after I get some strength up from eating that way for a week) and see what happens there. I just figured “baby food” like puree´d would be fine since the carrots were. What is wrong with the veggies and the natural sugars? Are we not to have honey too except in jello?
Angie,
Thank you so much for the support. This is a terrible disease to have and it just doesn’t want to go away. It bums me that the SCD isn’t working for me either… but as Comfy Tummy said above, apparently I’m doing it wrong. Did you do it the same way? I hope for the best for you and it is good knowing that I’m not alone, even though it totally sucks that more and more people out there have this.
Peter,
I wish alcohol worked for me. I think it hinders me. I even would always notice a warm sensation on the inside of my rectum when I drank and thought that was werid. does anyone else have this. That’s why I tend to stay away from it, though, I love red wince, I haven’t had it since April :(
p.s.
red meat seems to really be beneficial to me when eat it.
So… I’m taking Comfy Tummy’s advice and I started anew today. (I figured, why wait a week?) I made some more pureéd carrot and chicken soup(hooray… I’m so sick of that actually, but oh well), I’m making a batch of burger patties so I can heat them up any time, bought some tuna steaks and some chicken breasts and DCCC. I’m making a whole new batch of yogurt tonight.
So my diet for the next few days will be this. I’m not adding in any welche’s jello (just in case), but I do drizzle a little bit of honey on my DCCC and yogurt. I figured since it says you can add it to the jello, it’s okay to have a little in the diet. Right? I never get gas or cramps from it anyway, so I should be fine… right? Anyway, I’m going to see how this goes for about 4 days and see if I improve without any veggies except the carrots in the intro soup (pureéd of course)
So far this morning I’ve had DCCC with a little bit of honey, home-made yogurt with a little bit of honey, and a chicken breast strip that was cooked using a little bit of olive oil and salt. Very plain… that should be good. A new approach. I just want something to work! Lunch will be left over lean pork chop and DCCC and a little bit of honey… Dinner… soup. Start over tomorrow and the only difference will be lunch will be a plain burger pattie.
Wish me luck! I’ll let you all know how it goes in a few days :)
Eat lots of red meat! There’s actually a lot of nutrients in red meat that anyone with UC would need, including iron and B-vitamins for energy. Make beef soup with fatty cuts of beef bones. The intro diet says chicken soup, but any meat+bones soup is beneficial on the intro diet.
RE: my previous post. I’m not encouraging anyone to drink booze – it’s just what I do, ok?
Please don’t post it Adam if you think it might upset some people or they take it the wrong way. I don’t want to held responsible.
Thanks,
Peter
Hey Peter, No worries here. At the end of the day, everyone bodies are different, and what works for someone may or may not work for others. It’s just like how the drug companies never have a money back offer on their medications, they know its also hit or miss. Congrats on finding something that works for you! and I wish I was hanging out down in NZ with you right now!
Sweet as, cuz. Just coming into summer down here…..
Haha, well I’ll go there. There’s a reason drinking alcohol may work for some people. I used to drink Whiskey while eating fatty meats. If I didn’t, I couldn’t digest the fat. When I drank, I could. Why is that? Because alcohol is a depressant and it slows down digestion. I believe it allowed my damaged system the extra time it needed to process the food. One can get the same results from medical marijuana and THC oil.
Adam,
Your post has actually helped me! I have been drinking red wine nightly for over 12 years and it seems when I stop for various reasons my symptoms return. I was holding back from recommending alcohol to others but do find it has helped.
I just want to add a few points that you might want to try out on SCD:
1. Fats, you need good fats in order to rebuild the digestive lining. Butter fat is the best, animal fats are good too. Try to get fatty cuts of meat, not chicken breast. I throw fatty t-bone steaks in the crockpot and let that simmer all day to eat as a stew later.
2. Gelatin, this is very soothing and helps repair tissue in the digestive tract as well. Make the chicken soup with bones and joints (easiest is to use a bunch of chicken legs) and drink the broth with lots of sea salt in it. The homemade jello is ok, but I found better healing with a really thick long-simmered pot of chicken soup.
3. Fiber, focus on soluble fiber found in bananas, well cooked carrots and applesauce. If you really want to add non-SCD food in, try potatoes first or white rice. Stay away from all gluten, and I would add stay away from brown rice too. Refined white rice is actually much easier to digest.
If I were you I would definitely add in very ripe bananas, SCD yogurt, fatty beef or lamb, and chicken broth made with lots of bones.
I hope you give this a try and also give it time to work. It took me a long time to be able to eat lots of vegetables, I just ate a lot of meats and yogurt for a while, and bananas!
My last CDSA test came back and said I was not digesting fats as well as I should be. It was improved over my March 2009 test, but still needs improving. Any ideas on how I can do that? Otherwise, it’s a vicious cycle if I can’t eat and digest fats and yet it’s needed for healing.
There’s a few things you can do yes.
First understand how fat is digested:
1. Bile is produced in the liver, stored in gallbladder and dumped into the small intestine when a meal is eaten.
2. Lipase is produced by the pancreas and dumped into the small intestine when a meal is eaten.
3. Bile separates the fat into little fat globules so that lipase can get in there and break down each molecule.
If not enough bile or lipase is produced, then fats might not be fully digested. There can be a few causes:
1. Not enough stomach acid (stomach acid starts the digestion process and helps signal for bile and lipase to be released, you can take Betaine HCL for this)
2. Liver or pancreas problems (inflammation or congestion, common in IBD patients)
3. Irritation in the duodenum where all this takes place (again, inflammation, colitis etc)
I would suggest trying a Betaine HCL with pepsin supplement to start with. http://www.modernherbalist.com/betaine.html
You can try taking supplemental bile as well. Make sure to use lots of good quality sea salt, keep good B-vitamin status (get a blood test and supplement if low), and consider taking magnesium. All these are required to produce a good amount of stomach acid.
Drinking lemon juice in water first thing in the morning helps.
Include natural anti-inflammatories like turmeric and ginger. Ginger tea is especially helpful for digestion. Add both to soups and stews.
Broth also helps with stomach acid, so try to have a bit of broth with every meal. Add ginger and sea salt to your broth.
Sorry for the long response, maybe I should just write a blog post about this topic!
Kat,
Awesome response!
@ Reid – Listen to Kat she offers a wealth of knowledge! The only other comment I would add is to pick up some digestive enzymes to go along with the Betaine HCL. Until the liver/pancreas and inflammation problems are addressed it is almost impossible to get enough Lipase without supplementing.
Also, Alcohol (up to a point) causes an increase in stomach acid so that could explain why you digested the steak better.
@ Kat – Awesome Advice and yes you should copy and paste this into a post! I think many people have a problem with fats and need to know this type of information.
Sunworshipper – I tend to generally agree with what Kat and Comfybelly advised you to do. It appears you probably need to up your protein and fat amounts. The low energy can easily be caused by not enough calories so I would suggest you sign up for http://www.fitday.com/ account and track your calories (try to get 2000 a day or use an internet calculator to estimate). It is very easy to accidentally under eat on the intro diet and when beginning the SCD.
Your body needs saturated fats and eating a diet low in them for extended periods can cause depression and other side effects. I would encourage you to pick up some coconut oil and use it and butter on most of your meals.
I usually advocate no dairy in the first month but if you do fine with the DCCC and yogurt then stick with them, they are also high in calories and good fats. If your noticing digestive problems with meats and fats (very common) then I would encourage you to pick up some digestive enzymes I use and recommend GI Pro Health Prozymes.
We too offer a free guide on how to start the diet, deal with some of the pain and die-off associated with it and have meal plans and step-by-step instructions you can go here to download it
I hope this helps hang in there with some diet tweaks and everyone’s help I’m sure we can get you feeling better!
Now the various medical sciences agree that inflammation underlies the cause of many diseases, colitis being one.
Turmeric is proven to inhibit inflammation. Try blending 5 grams of fresh turmeric + 3 grams of fresh pineapple with some water and drink on empty stomach. This is for acute situation. Leave out the pineapple if it is too acidic for you.
This should dramatically reduce inflammation.
On regular basis, a lower dose of 2 grams of fresh tumeric + 1 gm of pineapple, taken 3 times daily would be suitable. However adjust according to your response.
Turmeric is a proven remedy for colitis. Here are some links:
(I have’nt collected links for pineapple but it is a fruit traditionally used by some cultures to cure diarrhea and intestinal upsets, very effective)
http://www.livestrong.com/article/119333-benefits-turmeric-colon/
http://www.livestrong.com/article/141251-turmeric-anti-inflammatory/
http://www.turmeric.co.in/turmeric_faqs.htm
http://www.turmeric.co.in/turmeric_ayurvedic_use.htm
http://www.naturalmedicinejournal.com/pdf/NMJ_DEC09_RI.pdf
In my previous post, the amount of turmeric I recommended was a very cautious dose.
Personally I use 50 grams of turmeric a day and within a few days of taking it there was such a dramatic improvement in my colon/rectal inflammation.
How do I take turmeric? In the morning I blend 50 grams of raw turmeric – I also add some black pepper and ginger into the blend but I think these ingredients are not critical – with some water to make it into a juice. Then I boil it for 10 minutes and drink it several times daily.
Okay how much turmeric is safe? Acoording to http://www.ncbi.nlm.nih.gov/pubmed/11712783?dopt=Abstract the safe dosage of curcumin is 8,000mg daily.
From various articles like http://www.charakinternational.com/pdfs/article11.pdf I understand curcumin content in turmeric is between 1.06% and 5.70%.
Even taking the highest figure of 5.70%, you have to consume 140 grams daily of raw turmeric to reach the safety limit.
I provide these information in the hope that others will benefit.
Depends on the individual!
Get an ELISA food allergy test (a simple blood test) and of course a Celiac test.
VEGAN works for me!! Low fiber when flaring; high fiber when not. Whole foods, low sugar.
I found out I am sensitive to SOY, Kidney beans, Peanuts, string beans, Chicken and various kinds of dairy through that blood test.
SCD did not work for me and I tried it twice. My dr. was actually a holistic md and he said to go back to eating whatever I knew didn’t bother me.
The yogurt helps some, but as for the entire diet – not so much. Its ok. You have not failed – I know thats how I felt anyway.
My next plan of action is accupuncture, prednisone (which I have never tried), then surgery. I’m so tired of dealing with this 1.5 years remission 1.5 years sick.
I just found this website btw – glad to see it!
I couldn’t do SCD since I have to travel for my job and it is too restrictive. I have had to test what I can and cannot tolerate. I seem to do fine with proteins and starches. I seem to have no reaction to sugar either. I started a few different diets and found that none of them really worked for me. I had to do trial and error, which is what my GI doc told me to at the outset and he was right. I didn’t want him to be right, of course, because this is time consuming to use this method but since I don’t fit into a predefined mold, I am trying to accept it. I do get lazy and tend to stick with a few items when I don’t want to mess with it. I will say that when I ate homemade chicken soup, I did feel better.
I know how you feel too. I have had UC for over ten years. I have been on the SCDiet for many years and although it did help I have not been able to completely go off meds and I do have flares from time to time. I’m currently coming out of a flare actually. Numerous trips to the bathroom, bleeding, loose stools, feeling lousy and out of control of this disease again… I had a colonoscopy in June and went into a flare that I could not get under control even with cortisone enemas and upping my meds. I read a post from someone on Pintrest about how she was on the SCDiet but since she was in a flare she has decided to change things up a bit. She was starting the GAPS diet. I never heard of it so i researched the diet for myself. I purchased the book and read it really quick as I was in a race to get my flare under control. To me, the diet is similar to the SCDiet. Actually Dr. Natasha Campbell-McBride references the SCDiet in the book something in that is based on the SCDiet with alterations. The intro diet consists of eating a lot of broths and soups and homemade yogurt, kefir and fermented cabbage juice. I am new to the diet, so I may not be exact but that’s the gist. I have seen improvement already. Bleeding has stopped, my stools are formed and trips to the bathroom have declined to half of what they were! I think what has been good for me is that I have cut out almond flour baked goods, fruit and raw vegetables, like salads etc. My gut needed a break and a chance to heal. You may want to check the diet out and see if it might help you. I wish you the best. I feel alone a lot as there is no-one in my life that I know with this disease. It was nice to find this web page and be able to connect with others going through the same thing. I wish you the best, and hope you feel better soon!! :)
folks,
I got severe UC at age 19, about 15 times a day, Mucous, Blood and really painful stretched stools. Shown around the world, tried all types of medicines and practices (Homeopathy, Ayurveda, supplements, you name it, I tried, spent god knows how much money.
I am 42 now. There is something that worked for me (80% in remission) and I don’t if I can celebrate or not, but wanted to share as I know how badly folks want to get out of it.
I researched on how Vitamin B and E can help cure. I thought a lot about it and then I got into action. Got hold of Pure Almond Oil (Purest form of Vitamin E with other natural benefits) and Vitamin B ( I take Natural B from Amway as they suit me). Here are the rest in easy to read bullet points…
1. 20ml Almond oil in 20ml filtered water taken as enema each night. Do this for 2-3 months at least.
2. 1 800 gm of Asacol tablet twice a day and 1 Vitamin B tablet each night with dinner
3. 1 Teaspoonful of Almond oil, twice, one morning and once evening with dinner.
Blood stopped in 8 days. Mucous stopped in 3 months. Stool got some shape in 3 weeks. Frequency is average 3-4 a day, mostly mornings. Urgency to go or control has not gone much, I would say 40%. Weight increase 6 kg in 6 months since treatment started. Now here is what many will not highlight…
1. I cannot stop Asacol. I tried and I got aggravation. Started again and I got back to normal in 5 days. So, Asacol is I guess lifelong for me.
2. I stopped enema after 3 months but am continuing with all other things. It has been 4 months I have not taken enema and I am fine.
3. Food has to be controlled. Start slow, try everything BUT small portion. Remember, it takes 48 hours for the food to show on you, so remember it might not be the food eaten one night before causing trouble, good chance are that the one before is.
4. Everyone will have different food reactions. For me, Fiber, fruits, Brinjal (Eggplant) will immediately react. So please know your foods.
5. Beer irritates, but seen that other lighter drinks like Gin or Tequila are not that bad
6. Also, I was a non smoker. Got reports that smoke helps stay in remission so I started two light cigarettes a day, no more no less. I don’t know if this worked but will do it as long as I am away from UC. PLEASE DO SO IF YOU HAVE CONTROL ELSE DO NOT GET INTO THIS.
7. Raw Turmeric: Well I get this in India during winters, so fresh juice of 1 thumb piece with warm water each morning has helped too. So do it if you can get it.
This is not much of a problem. Enema might look horrible initially but in few days you will get used to it. Stay +ve and stop dreaming of results from day one. Actually stop worrying or thinking about results and do this without hope. This is the best approach.
I know how you feel and God has been kind to me. I hope the same for you all.
Regards,
Kapil