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Posted 3/3/2017 10:00 PM (GMT 0)
I am trying out the SCD diet bc I would love to be off of medication (or at least not have to use it as often) to control my issues. I am currently on colocort enemas at night but I am not having relief. Prior to that I was on mesalamine enemas for about a year with really no luck. I'm having a bad flare up now.

Anyone who has done/is doing the SCD diet, would you mind sharing things that worked? Simple things to eat? Did you feel it helped? I am very sensitive to eggs (just if eaten scrambled or plain, cooked in things is fine) and I'm not eating dairy at all as it does bother my system.

Also, did you take a probioitic? Did you find it helped?

Thank you!
Posted 3/3/2017 10:40 PM (GMT 0)
I'd recommend continuing your meds and expirementing with SCD.

Diet mods did absolutely nothing for me, so there's no guarantee it will work for you. Some have luck. Like everything with UC...
Posted 3/4/2017 12:04 AM (GMT 0)
SCD was not the answer for me although diet modification is the reason for my remission. Good that you already know 2 major foods that your gut dislikes, that's a great start. So why not try SCD and see if that works for you.
It does for some people and not for others.

I suggest you don't stop RX meds. My personal feeling is do everything that helps get you better.
If you have no negative symptoms to RX why stop?
RX didn't do much for me but my current RX have no negative results so why not (and I have to pay for them).

No oral meds? So you have proctitis diagnosis?
Certain food has a powerful influence on my gut.
When you figure out what your safe foods are life gets much better.
Good luck.

edit to add: yes VSL#3 was very beneficial getting me to remission. Now I only take it when things get wonky. I've also taken other probiotics but VSL#3 is the bomb (in a good way).

Post Edited (imagardener2) : 3/3/2017 5:11:36 PM (GMT-7)

Posted 3/4/2017 3:59 AM (GMT 0)

Cmotzie said...
I am trying out the SCD diet bc I would love to be off of medication (or at least not have to use it as often) to control my issues. I am currently on colocort enemas at night but I am not having relief. Prior to that I was on mesalamine enemas for about a year with really no luck. I'm having a bad flare up now.

Anyone who has done/is doing the SCD diet, would you mind sharing things that worked? Simple things to eat? Did you feel it helped? I am very sensitive to eggs (just if eaten scrambled or plain, cooked in things is fine) and I'm not eating dairy at all as it does bother my system.

Also, did you take a probioitic? Did you find it helped?

Thank you!

If the flare is bad, I would combine diet with meds. It's not the right time to go off meds entirely when in a flare.

I had a lot of success on SCD and was in remission for 12 years (with only ocassional low doses of asacol).

If you want to do SCD, go to the websites and follow the directions exactly. Start with the intro diet for at least a few days and the gradually add foods (following the protocol on the pecan bread website). If something doesn't agree with you then you cut it out or can re-introduce later. Keep a food diary. There is some structure to it so I would follow that structure that has worked for thousands of folks and tailor it to your needs. There wasn't one thing in particular that worked. I just happened to follow it strictly and then tailored it to my own individual needs based on reactions to certain foods.

The diet helped me within 1 week, but for some it can take 1 month+

I also take VSl 3 (4 caps per day) and think it helps!

Post Edited (Jane974) : 3/3/2017 9:03:00 PM (GMT-7)

Posted 3/4/2017 4:12 AM (GMT 0)
I was really sick in 2009 to 2011. 2012 was a little better, but I still had a lot of pain and diarrhea. I mainly used cort enema because that was the only thing that helped with the bleeding and cramping. Nothing slowed my diarrhea.
In the spring I started a low carb diet for weight loss. I have some stubborn fat that even colitis flares couldn't get rid of. I remember a few times having a regular poo and telling my mom I was shocked. No medication ever gave me regular bathroom visits. Then I got pregnant and quit, and my symptoms worsened again. I really didn't put two and two together yet.
At 20 something weeks I failed the blood sugar screen and I knew low carb diets were the gold standard for treating diabetes, so I ignored the doctor about eating a lot of carbs and taking shots and went back to low carb. Somewhere in there my colon returned to normal. I thought it was my pregnancy and when it ended, my symptoms would return.
I did have a tiny blip when my baby was a few weeks old, but it ended within a week. I did go back to carbs and noticed I felt awful. Awful body aches and my tummy made so much noise, that I tried to avoid them, but it affected my milk supply.
A year and a half ago I really bombed another blood sugar screen at 294. My baby wasn't nursing near as much, so I didn't have to worry about milk drying up and went back to full on low carb, and my tummy felt so much better.
The doctor gave me glipizide to take if I have anything that will raise my blood sugar, and I notice when I have carbs, I bloat, get really gassy and sometimes have some looser BM's.
Looking back, I think it was the low carb that ended my never ending flare.
Posted 3/7/2017 2:40 AM (GMT 0)
I eat the same things every day. Giant omelette for breakfast, snack is yogurt with fruit, lunch is meat and veggies, another snack of avacado or other fruit, dinner is meat and veggies again. Dessert usually involves peanut butter in some way.

I don't think of SCD as a miracle cure. Really just a personal experiment for me. Can't say whether or not it works but I recommend sticking to it for a few months before throwing in the towel. You will learn from it regardless of your outcome. I also would never consider dropping my maintenance meds but to each his own.
Posted 3/15/2017 12:16 AM (GMT 0)
I had huge success with the SCD diet! I followed it precisely and finally was able to get off my meds. My colonoscopy was completely clear, my cholesterol levels were amazing and I felt good. I did find out that milk and eggs were causing major issues and it showed up in food intolerance testing. In the beginning I ate SCD legal cheeses but was still having slight stomach issues, I just loved cheese so much. I have since removed eggs 100% and dairy and have felt great. Recently, I have added potatoes and rice back in and have started having some set backs. SCD must be done for how your body reacts, some foods you may tolerate and some not so much. Once I kept track of everything I ate it was easy to go back and see what may have been the culprit. Being med free for almost 18 months (currently started to flare..strange protein "paleo" bars seem to be it) I recommend trying it. It's extremely difficult to be on the road without proper planning and at times I felt so darn hungry but I wasn't bleeding or having stomach pain so it was worth it!
Posted 3/15/2017 12:57 AM (GMT 0)
hey the lazz -

good for you - glad you have had success -

curious tho ...... were you doing fine with meds but just decided to go a different direction ..... or were you like me and got to the point where the meds just weren't cutting it any more and were reluctant to up the ante drug wise ?
Posted 3/15/2017 9:31 AM (GMT 0)
I would also recommend you look into the GAPS diet - it is basically a modified version of the SCD diet, and it has been extremely helpful for me - completely reduced bloating and pain. If you read the GAPS book, you will see it contains fairly sound explanations as to why ALL carbs and starches (and not only some carbs like in the SCD diet) should be cut out of the diet for a period of time in order to induce remission. The main reason is that these feed pathogen bacteria that live in the colon and that has been shown to be the main reason behind UC flares.
NB the GAPS diet was originally developed for Nervous / Psychiatric issues, but I have read in multiple sources that it works perfectly for IBD and.... it worked for me ;-)
Posted 3/15/2017 3:32 PM (GMT 0)

otaneresp said...
I would also recommend you look into the GAPS diet - it is basically a modified version of the SCD diet, and it has been extremely helpful for me - completely reduced bloating and pain. If you read the GAPS book, you will see it contains fairly sound explanations as to why ALL carbs and starches (and not only some carbs like in the SCD diet) should be cut out of the diet for a period of time in order to induce remission. The main reason is that these feed pathogen bacteria that live in the colon and that has been shown to be the main reason behind UC flares.
NB the GAPS diet was originally developed for Nervous / Psychiatric issues, but I have read in multiple sources that it works perfectly for IBD and.... it worked for me ;-)


just curious - how long have you been using GAPS ? part of the issue is long term sustainability of certain diets -
Posted 3/15/2017 6:04 PM (GMT 0)
Being on SCD diet or AIP paleo diet (what I did) is so terribly difficult to do if you are traveling or away from home often. It requires a hefty amount of cooking and that can be terribly annoying. BUT it did help me get through my last flare and I am currently starting it again to get through another.

I cut out everything almost until I was eating these things:
Carrots, Squash (of all kinds), Meats of all kinds, tons of fish, avocados, spinach and kale, cantaloupe, blueberries, strawberries, honeydew. there were a few others but you get my point..

I did this for about 4-5 weeks and found complete remission. only lasted for about 3 months though now I am back to here. I let my diet get super relaxed though minus eating dairy and gluten as much as I could. I keep finding that eggs dont agree with me much anymore (especially the whites).

It is definitely worth trying out and I think this time if it works for me again, I will stay more strict after finding remission. Not as strict as being 100% on the diet but not a relaxed as I just was.... somewhere in the middle.

I would DEFINITELY stay on your meds though. I dont think jumping off of them is a great decision unless you were on something like Humira/Remicade etc and maybe you and your doctor decided you could try reducing back to 5-ASA or something.

Best of luck!
Posted 3/15/2017 8:47 PM (GMT 0)
Currently in a mild flare, and using SCD guidelines to manage it, along with low dose of prednisone and Lialda 3/day. I believe it has helped. It's definitely an adjustment (I sure do miss my oatmeal and rice), but it's doable. Like others have said, you will find yourself tailoring it to fit your own responses to things.

Some of the things I eat; smoothie for breakfast (unsweetened almond milk with no carrageenan, half banana with frozen berries, spinach, coconut oil and protein powder (you may want to avoid PP, but it works for me) - scrambled eggs, grilled chicken with avocado, roasted vegetables (bell peppers, all types of squash, onions), half a ripe banana with almond butter for snack, organic beef....Make tacos with beef and chicken and use lettuce cups instead of corn shells or tortillas, same with burgers. One of my favorite things to make is roasted spaghetti squash, then add organic spaghetti sauce with beef on top....don't even miss the noodles, which I only used brown rice noodles before. Just some ideas! One thing I love to make is called Cowboy Caviar (you can google the recipe), but it's basically a type of salsa, I just omit the black beans and corn, but the dressing combined with the avocado, red onions, and tomatoes is delicious, and you can add it to any meet or fish, and it makes it feel like you're not sacrificing so much....just makes things less bland!
Posted 3/17/2017 9:24 AM (GMT 0)
I've been on SCD for almost exactly two years now and have had positive results from it. However, I started it when in technical remission (still having pain and watery stools and felt on the edge of a flare and had developed secondary AI arthritis) rather than in a full flare. I've stayed on my medication (azathioprine and balsalazide) since I figure the combined approach is working well, and I'd hate to upset it.

I saw results on the intro SCD diet within a few days, so I knew it was worth trying. I would recommend avoiding too many raw vegetables, nuts or honey in the early stages.

Many struggle with dairy on the diet, but that has not been my experience at all. In fact, I think my gut (or gut bacteria) really need butyrate as I do very well on unpasturised hard cheese, butter and SCD yogurt. If you struggle with dairy, I would recommend coconut kefir or yogurt rather than isolated probiotics. Probiotic bacteria do make a big difference on the diet and there are many more in cultured unpasturised foods than in most commercial probiotics (and you know they're still alive).

I've also had some additional benefits from the diet--my secondary AI arthritis stopped being painful, I lost the last 15 lbs of pred weight, cholesterol levels went back to normal, adult acne disappeared, started sleeping better, dark circles under my eyes went away. The changes were quite noticeable for me making me think my biggest problem is dysbiosis, which SCD helps address.

All of that said, the diet is challenging, especially when out and about, eating at other people's houses or travelling (if you like to cook it's not very tricky at home and is a good spur to creativity). I've tested how I do when going off it periodically and I usually go back to having watery stools and an arthritis flare each time, so for now I will stick with it. The longer I've been on it, however, the more I can tolerate small deviations (some unfermented dairy, chick peas, a small amount of potato, etc). I've landed at a place where I follow the diet very strictly at home and for lunch at work and then try to eat whatever seems most compliant when out and about.
Posted 3/18/2017 11:15 AM (GMT 0)

lazz4 said...
I had huge success with the SCD diet! I followed it precisely and finally was able to get off my meds. My colonoscopy was completely clear, my cholesterol levels were amazing and I felt good. I did find out that milk and eggs were causing major issues and it showed up in food intolerance testing. In the beginning I ate SCD legal cheeses but was still having slight stomach issues, I just loved cheese so much. I have since removed eggs 100% and dairy and have felt great. Recently, I have added potatoes and rice back in and have started having some set backs. SCD must be done for how your body reacts, some foods you may tolerate and some not so much. Once I kept track of everything I ate it was easy to go back and see what may have been the culprit. Being med free for almost 18 months (currently started to flare..strange protein "paleo" bars seem to be it) I recommend trying it. It's extremely difficult to be on the road without proper planning and at times I felt so darn hungry but I wasn't bleeding or having stomach pain so it was worth it!

That is fantastic. I did a juice cleanse back in 2013 followed by a raw vegan diet. Was able to go off all meds and stayed off them for about 18 months. Same as you, colonscopy showed all clear! Then I ate pasta, which led to bread, which lead to Cheetos, which lead to cookies, which lead to fast food, which lead to pizza....well, you get the drift! At the end of 2014, I was in a flare and back in the hospital in 2015 and then again in 2016. I had no willpower and my old meds seemed to stop working.

I am doing the Leaky Gut Diet by Dr. Axe. So far so good. I went off gluten and dairy January this year, but heated up some store bought veggie broth (was doing a juice cleanse the month of January but needed something warm to sip on). After a week on that, I noticed some blood and mucus. I looked at the box and it contained GLUTEN!! WTH?? Since then I have been very strict and only eating food I cook. For me, keeping a log is key. As posters have said, what may be sensitive to you may not effect me in the same way. While the LGD says egg yolks are okay to consume, they do not like me so I stay away. But others have no issues with egg yolks. There is no one diet that is a one size fits all. Keep a log and right down your symptoms each day, along with BM and your sleep. You'll soon find a pattern of what to avoid when you start having issues. Then it's easy for you to eliminate.

Best wishes!

Trixy
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