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Enteral nutrition is working for me! And I have Crohn's colitis! :)

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Posted 2/9/2015 8:54 PM (GMT 0)
I'm so happy I can come here to post something positive. Here's the short version, after beginning to flare on Imuran, I started enteral nutrition, a liquid diet, and in a little less than 3 weeks my CRP went from 55 to 10.7. Woohoo!!! And I have Crohn's colitis which in the literature was sometimes not as likely to respond to enteral nutrition as with other disease locations.

I don't plan on getting off Imuran though, I just plan on doing the recommended 6-8 weeks of enteral nutrition and then hoping that the Imuran will help keep me in remission as I start to add foods back in. I'm actually pretty much in shock since I've tried so many things that didn't work for me: Remicade with methotrexate (worked for a couple months), Humira, LDN, SCD, AIP (autoimmune paleo), fecal transplants.

What had worked for me before was Cipro, but I would flare about 3 months after taking it, and it's not a long term solution. IV steroids, but also not a long term solution. TPN combined with IV steroids while waiting for Imuran to kick in.

For anyone thinking about doing it, there's a great book called "Beat Crohn's! Getting to Remission with Enteral Nutrition" by Margaret Oppenheimer. She lays it all out for you and is realistic about it. It doesn't work for everyone, but I think it's definitely worth trying, especially since I was skeptical it would do much for me since I have Crohn's colitis and haven't responded to much.

I make my own shakes with organic maltodextrin (either tapioca or rice), protein isolate (beef or pea), and coconut oil for a medium chain triglyceride. I also take a quality vitamin, Nutrient 950 with vitamin K and add some extra magnesium, calcium and potassium since that vitamin lacks those. I'm also probably going to add krill oil since I'll be on this longer than I thought, and I don't want to become essential fatty acid deficient. You can get prescribed formulas, but I wanted to try this since it doesn't have added sugar and since it's not elemental it tastes better than something with just amino acids. I don't advise doing what I'm doing though if you can get a dietician or someone to work with you on it, since I honestly don't know for sure I'm getting all the nutrients I need (though according to the RDA I am with my supplements). Obviously it would be best to have yourself monitored and do this with your doctor, but I just wanted to share.

I do have inflammatory arthritis with my Crohn's, and my ankle is swollen but doesn't hurt much, so I'll be interested to see when that will finally resolve. I thought I'd share though. Sorry this is so long, but I love being able to come on here and provide some positivity and hope for once.
Posted 2/9/2015 9:17 PM (GMT 0)
Hey that's great October :) Always good to hear of someone having success.

Like you, I have Crohn's-Colitis. And like you I tend to have 1-2 home made Enteral drinks a day. They work, no doubt about it. The difference in inflammation simply by the drinks can be quite remarkable.

I of course add my Woo/Thyme Gel Cap and Vitamin A&D3 daily. These all combined seem to keep the inflammation at bay for me. In fact I no longer remember the last I noticed even a tiny amount of mucus in my stool, which is crazy. I've been doing this for close to 1.5 years now. Over the past year I have the odd rocky patch usually due to trying new foods - returning to my homemade enteral drinks always takes me back to normal within a day or so now.

Keep at it and I hope you find more success and some much deserved relief.
Posted 2/9/2015 9:45 PM (GMT 0)
This is awesome news! It takes quite a bit of self discipline to accomplish what you have, congratulations and I'm so pleased for you : ) Good for you as well Canada Mark! I'll find out what my doc has to say at my appt tomorrow, I'm also still doing EEN.
Posted 2/9/2015 10:21 PM (GMT 0)
Hey Canada Mark,

Thanks for your post! I didn't realize you also were doing enteral drinks as well. I had recently started adding Oil of Oregano drops again along with Cinnamon oil, but that wasn't until just a few days ago, so now I'm not sure if they will help or not. I'm not sure if I will continue on that daily or just stick with the drinks, but I am hoping that I can add foods back in without issues. Did you start of with an enteral diet or just supplement from the beginning? I have read actually that even though the most effective method of using enteral nutrition is to go strictly exclusive enteral nutrition, some people were actually able to get to remission from just supplemental shakes, although I think the percentage was low. There is a lot of research though that having a bulk of your calories from the enteral drinks can keep people in remission once they add foods back in, so I'm debating on that once I start eating again.

I'm so glad it works for you as well even with Crohn's colitis. I feel like we need to get the word out there for the people who only have Crohn's colitis since I think a lot of doctor's aren't very optimistic about enteral nutrition working for people with that disease location, at least that's what I've seen. Thanks for sharing your experiences. You seem to have found a great combination that works well for you!

Hi Big Betty,

Thank you for being an inspiration to me. It was hard getting started in the beginning but reading your thread really helped to keep me focused, and now I'm surprised it's been 3 weeks. Halfway there if I do 6 weeks, but not sure if I'll go to 8 or not. Now that I know it's actually working, I'm much more motivated to stick it out. I look forward to hear how you're doing and am impressed that you've made it so far already. :)
Posted 2/10/2015 2:07 AM (GMT 0)
Edit: Never mind. Got a cold. Feel dreadful. Plagued with bleak thoughts, even though I should be happy right now... :-/

Post Edited (NiceCupOfTea) : 2/9/2015 7:36:58 PM (GMT-7)

Posted 2/10/2015 4:28 AM (GMT 0)
I should clarify or extend...

For me specifically, many foods have always caused problems with inflammation. I did the strict SCD thing, with some success but always needed meds. Without meds SCD would't keep me from flaring. Over the years (~12 now) I noticed that the easiest thing for me to digest without issue was simply lactose free protein powder and Orange Juice/Water Mix (50/50). In fact my bowels always felt somewhat calm after drinking this. So this became my go-to food when I was really flaring. The problem for me is that is made me super crazy hungry and protein and juice alone isn't all that healthy or even a fun way to live so I always snuck solid food in at least once a day. Oddly even if drank these twice a day with traditional meds (methotrexate and eventually imuran) I would still eventually flare. But at least they gave me a source of some nutrients.

So for many years I would mostly have this for breakfast and solid food for lunch and dinner. about a year and a half ago I tried the WOO/Thyme thing with Imuran and felt a lot better. Every now and then I try some foods and have a bad reaction (inflammation). What I noticed was reverting to the protein and juice thing twice a day got me through and seemed to calm things down again pretty quick. So then I clued in that I could make Enteral type drinks very easily simply by adding a starch and a fat source like you and voila... a meal replacement drink. My body really liked them! A lot. And much more healthy than just protein and juice. Except that I still always felt crazy hungry for solid food and could never stick to just this 24/7 for more than a day. It's darn tough! So congrats on having some serious drive and willpower...

So I don't doubt that they help significantly for some.

I am not 100% enetral nutrition and have considered it, but I lack the willpower... What I do know from past experience is that one or two of these a day really calms my system especially when combined with the treatment I am trying.

So I would say I started with the WOO/Thyme supplements first then added in Enteral (or home made meal replacement drinks) to this with a heck of a lot of success.

PS -On a side note I for some reason have trouble with Cinnamon Oil, but others have had some success. I think it's a bit of an irritant so do be cautious.

PSS - I never really thought to mention the home made drinks on the UC board cause well, most on there don't have issues with food so much, or not to the degree that Crohn's people have. But even today both breakfast and lunch were home made meal replacement drinks. I can now finally sneak in the odd chocolate dip donut or a piece of cake or a bit of milk with no issue. It seems that my tolerance is directly tied with inflammation. The less inflamed I am the wider variety of foods I can tolerate - even some gluten and milk, though I am afraid to push it.

So again congrats on the success...

PSSS - Sorry for being long winded! But based on my experience, I would think that adding foods back should be somewhat easy to flush out what your system likes and does not. Especially if you have solid stool again. And if you get a bad reaction (inflammation i.e. mucus in stool or very thin stool or loose stool) then stop and go back to the meal replacement drinks till this resolves and you feel better again then either try the same food again to be sure or switch to another food. This is what I did and came up with a list of foods my body is fine with. It's pretty hard to do but nowhere near as hard as pure liquid diet so it should be a walk in the park for you.

Post Edited (Canada Mark) : 2/9/2015 9:33:22 PM (GMT-7)

Posted 2/10/2015 11:15 PM (GMT 0)
Hi Mark,

Thanks for sharing your experience. No need to apologize. It's interesting how you happened upon enteral nutrition, and don't feel bad about not doing it solely, since it doesn't sound like you ever really needed to go that extreme. The only reason I'm doing it exclusively right now is because I don't have a lot of options left, and I really want to avoid steroids since I was on them for most of last year, and I feel like they really took a toll on me this last time, especially with my mental health. Honestly, I didn't think I would make it past a week on this. It was really hard in the beginning, but I think part of it was that I wasn't getting enough calories. I totally understand wanting to eat solid food, and I struggled with it a lot, but I found that getting in enough calories helps a ton. So if anyone is contemplating doing this, it is definitely a commitment, but I would say after the 2 week mark it started to get much easier, and now I just make sure I get enough calories, and I'm usually pretty good. Obviously having proof that it's working (blood work), makes it much easier to stick with, and then of course keeping in mind the reason why you're doing it helps such as avoiding steroids or a hospital stay.

It sounds like supplemental enteral nutrition works well for you, and I'm going to see how I do once I add foods back in. I actually do not have solid stool right now, which I've read can be common for exclusive enteral diets. So I'm not quite sure how I will know for sure if I am reacting to foods, since there are only a few foods I've had before where I've seen immediate reactions. Thanks for the advice though. I will probably try and add back one food at a time, and honestly I feel like this will be more difficult than just sticking with the enteral drinks. I've heard that's why many people relapse, because they want to return to normal eating too quickly. I guess I'll see how it goes.

And I think I'm going to drop the cinnamon and oregano oil. Whenever I take a substantial amount of them, especially oregano oil, I get really bad, urgent D. Since the enteral drinks are doing fine without them and they seem to cause bad reactions with me, I'm going to drop them for now.

Also to add to your comment on UCers not having issues with foods like Crohn's people do; I've read in a few places now that people with UC don't respond to dietary changes like people with Crohn's do, and if they do it's because they've been misdiagnosed with UC and actually have Crohn's. I thought that was interesting.
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