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Just Started Entyvio and SCD LOG, any input welcome!

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Ulcerative Colitis
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Posted 4/1/2017 10:41 PM (GMT 0)
Ok guys so since I just started Entyvio a week ago.
brief history, had UC since 2013, remicade got me into remission was pretty much back to normal. fast forward 3.5 years it stopped working. humira was next, made things worse, even with uceris , then they added prednisone 40mg then taper to 20 and stay there , i used humira for 5 months did zero, then stopped, and stayed on prednisone at 20mg, every time i went to 15 watery stools came back.
they increased me to 30mg and now started entyvio a week ago, i also just started SCD which is entirely new and different for me. I'm a pro athlete so its a struggle trying to maintain weight and workout and everything while still trying to take care of my health and heal my gut. i started this log for help, support and maybe to help others in the process. having an insanely strict diet is easy for me so its maybe easier to pinpoint what might be causing issues but as you all know it is still so frustrating. so heres what I've been eating and with a few concerns or questions,

I've never had fruit in my diet before so its all new.

i eat organic turkey, chicken, cage free eggs, whey isolate with zero lactose, almond and peanut butter no sugar added, some raw almonds, occasional powerade zero - i know its not SCD legal trying to stay hydrated with liquid stools, and i had to cut red meat until stomach calms down

* i think the grape juice might be wrecking me, its kinda gross and TMI but when i have a bowel movement more often than not ,except today, which was the first real day i had a normal BM, it smells just like grape juice! i don't know if its not being absorbed or what but this concerns me pretty sure i can't handle it

for my routine I'm normally supposed to get anywhere from 3-500g of carbs a day so you guys can probly see why this is a challenge to maintain muscle and weight. I've been having 3 carb meals a day totaling about 100g per day. banana with a coconut milk, 2 tbsp pb and whey isolate for meal 1, the pre and post workout meals include 8-10 oz of grape or apple juice, i think its starting to affect me negatively so i think i might use just bananas for a few days and cut the juice. I'm still so confused which to chose if i did stay with juice since everything says concentrate....

lastly another thought for now, today has been the first day I've had a real normal BM so the reduction in carbs and or SCD has helped somewhat. i don't see myself doing this for life tho, previously my only 2 carbs in my diet were jasmine rice and karbolyn _ its a sugar free carb powder based from corn, rice and potato. it digests fast. is this diet mostly to restore the normal bacteria then slowly add things back in or do people run this for years or what?

also current supp additions - turmeric capsule at night, culterelle, not sure if this is decent or not, i was going to add glutamine soon too..

thanks all i will keep logging this and any and all help is appreciated!
Posted 4/2/2017 12:10 AM (GMT 0)
Why don't you wait to see if the Entyvio works before going on the SCD? There's nothing intrinsically more healthy about the SCD than a less restrictive diet. I dunno, just my two cents. Feel free to ignore them.

Just one more thing occurred to me. You don't need powerade zero for a rehydrating drink. You can make oral rehydration solutions for little more than pennies (or cents) with water, glucose and salt. (I suppose the glucose is illegal too, god only knows why - a simple sugar like glucose will get absorbed in the upper small bowel long, long before it has a chance to reach the colon). Anyway, if you're interested there are plenty of recipes to be found on google.
Posted 4/2/2017 12:35 AM (GMT 0)
The only reason i a started it was i felt totally helpless with continuous liquid Bms. i am open and was open to paleo, ketogenic, or other diets, i just felt a week ago, maybe all the carbs are affecting me, even the karbolyn powder I'm not sure about i only had 1-2 of those shakes a day so 100g of carbs from that. I'm still not sold on the fact that white or jasmine rice inflames the gut when for 14 years in the only carb i have tolerated, that and some potatoes
Posted 4/2/2017 9:57 PM (GMT 0)
I've been on SCD for over 15 years with great success. I was in remission for 12 years and have only needed very low doses of meds when flaring due to SCD combined with meds. If you join the SCD listserves you will see lot's of people like me with longstanding remissions.

If you are going to do SCD or any of the restricted diets, try to follow them exactly and do things in stages. SCD is a STAGE DIET if you want to do it all the way. If you are not in remission, you have to start with the intro diet for 3-5 days and then gradually incorporate phase 1 foods. Follow the stage according to the pecanbread.com website for best results. My experience is that folks who don't get results on these diets often don't follow them correctly and for a portion of people they don't work. It's also good to keep a food journal so you can modify the diet if needed and see if you have reactions.

FYI, You are already not following the diet if you are having raw almonds and almond/peanut butter early on. Raw nuts are considered very advanced foods on SCD (and for all UCers) and should not be tried until you are in solid remission for a while. Peanut butter is a legume and pretty hard to digest for many UCers unless in remission. I'm also not sure about the whey and whether that is SCD legal (google online). Plus, coconut milk is pretty advanced on SCD. Additionally, SCD is not low carb, but if it's the carbs that are a problem you can do low carb SCD. Fruit juice has a ton of sugar so it really needs to be diluted and some UCers may not tolerate due to sugar content.

Thought you may want to know that you are incorporating advanced foods the first week on the diet so if you are making progress it is unlikely the diet! Have you tried very well cooked carrots and green beans? They are generally well tolerated on SCD in the beginning after the intro diet.

Post Edited (Jane974) : 4/2/2017 4:06:12 PM (GMT-6)

Posted 4/2/2017 11:58 PM (GMT 0)
Hi! I'm sorry you've been feeling so bad.

For what it's worth, I also agree that if you start to feel better you won't know if it's the diet or the Entyvio that's working. I think it would be horrible to follow that diet if it's not really helping you.

Just my two cents though. I hope something starts working soon.
Posted 4/3/2017 4:26 AM (GMT 0)
I sort of follow SCD -- while also paying attention to paleo, low fodmaps, and AIP -- which is hard, since one diet uses a food as a staple while the other bans it completely!-- talk about confusing! It doesn't heal me, but I do think that it keeps me from getting worse, so I pretty much stay on it.

I think one of my triggers is sugar, so I try to stay completely away from it, and also all the sugar substitutes, as my doctor suggested I stay away from them. If you read some of the protein powder labels, lots of them use sugar or sucralose. I like a brand I get at Target that's plant protein based and has no added sugar or sweetener (Aloha brand). I found a lactose-free kefir that I've been using as a base along with coconut milk. If you feel rice doesn't bother you that could be the first thing you add back in after your elimination diet.

I just started Entyvio a week ago, too!
Posted 4/3/2017 4:37 AM (GMT 0)
flowersGal- pooh nice i hope it works for ya!!!


ok so i added back some rice today and removed the juices, wow what a difference! feel 10x better already! I'm experimenting with the diet to see which is best i know reducing the carbs seemed to help then cutting out my sugars helped even more, so it seems I'm onto something

also i started BPC 157 today, you guys should check it out, apparently it would be a god send if it works its a peptide that heals torn muscles and reduces inflammation...
Posted 4/3/2017 1:09 PM (GMT 0)
Csantamaria really hope the entyvio works for you and you get into remission. I'm new to UC had a real bad flare in January and have been trying to stick to the scd diet as close as possible and I believe that it has helped prevent the flare getting worse because when I slipped up once or twice my symptoms would worsen. I can't say yet if it is helping to improve things because after a nasty virus I am back in a bad flare so like Jane974 mentioned I've gone back to the intro diet, broth, scrambled eggs etc.

I avoid juices in a bad flare they are too sugary and make me worse. If you need more carbs bananas are really good. Mashed butternut squash, carrots and celeriac are good but really overcook them so that they are easier to digest. A typical evening meal for me after doing the intro diet is wild salmon, mashed butternut squash and carrots, really well cooked zucchini minus the seeds and skin, and cooked avocado or an avocado, asparagus and zucchini omelette. For breakfast I normally slice banana and cook it in a little coconut oil add a smidge of honey and have in a bowl with a big dollop of scd yoghurt. The banana goes al caramelised, skip the honey if trying to avoid too much sugar. Making me hungry now smile

The Pecanbread website that Jane mentioned is really helpful for following scd..

Never heard of BPC157, is it an amino acid? I'm always looking for new supplements to try but like to fully check them out before taking. Will check this one out.

Jane947 what's the scdlistserves? How do I join? Good to hear you've had a long period of remission.
Posted 4/3/2017 8:23 PM (GMT 0)

NiceCupOfTea said...
I suppose the glucose is illegal too, god only knows why - a simple sugar like glucose will get absorbed in the upper small bowel long, long before it has a chance to reach the colon

Because commercial preps of glucose (aka dextrose) are usually not very pure.
Posted 4/3/2017 11:56 PM (GMT 0)
When I decide to follow SCD strictly I never cheat. This is so I can make an.informed decision on whether or not it is working. To be honest, I still am not sold after over a year but feel it will take years of experimenting to figure it out. I have only had the disease a couple years but have not flared while following SCD. Take that for whatever it's worth.

I would suggest you follow the diet strictly or not at all, although, I agree with NCOT that you may just want to give entyvio a chance on its own as not to confuse things.
Posted 4/4/2017 3:53 AM (GMT 0)
^^^ thats a good point tho, yea i went back to jasmine rice and feel WAY better without the juice

i added turmeric, ordered boswellia and ordered DWGE hopefully they help
Posted 4/4/2017 4:28 AM (GMT 0)

loulou82 said...



Jane947 what's the scdlistserves? How do I join? Good to hear you've had a long period of remission.

Sure--here is the link to the SCD . It's been years since i've subscribed or checked it regularly so I don't know if this is updated:

listserve---Send a blank e-mail (no subject, no message) to:

[email protected] (regular subscription) or [email protected] (digest subscription)

Once your subscription is confirmed, go ahead and post an intro to:

[email protected]
Posted 4/4/2017 4:31 AM (GMT 0)

csantamaria said...
^^^ thats a good point tho, yea i went back to jasmine rice and feel WAY better without the juice

i added turmeric, ordered boswellia and ordered DWGE hopefully they help

Those supplements are all known to help UC for some people. Try introducing them gradually one at a time and keeping a log of symptoms. Otherwise, you are trying 5 new things at once plus diet and meds and you will not know which is working/making you worse.
Posted 4/4/2017 5:02 AM (GMT 0)
ahh yes good point! thank you
Posted 4/4/2017 11:10 AM (GMT 0)
Thank you for the link Jane974
Posted 4/12/2017 1:09 AM (GMT 0)
i wanted to bump this thread a little, in general is dextrose a bad carb to use? like gatorade, does it cause inflammation and bad bacteria buildup?
Posted 4/13/2017 5:01 AM (GMT 0)
I've found that sugar is not good for me, and I try to stay away from it, especially when flaring. It will usually give me some symptoms, maybe not awful ones, but enough that I don't feel great the next day.
Posted 4/14/2017 3:06 AM (GMT 0)
yea i gotta agree with you there
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