Helen

 

Last month I decided to go on a 3 week ‘elemental diet’ between Thanksgiving and Christmas.

An elemental diet is a liquid diet which doesn’t need digesting because it’s broken down into amino acids, simple sugars (it contains a little oil also). For reasons that aren’t entirely understood a few weeks of an elemental diet often helps reduce Crohn’s symptoms (although the symptoms may return afterwards). I’d been interested in trying this type of diet since soon after my diagnosis but didn’t know where/how to get elemental diet formula.

Then I learned that the website I found this fall Listen To Your Gut sells elemental diet shakes powder (Absorb Plus) and these shakes have been formulated by Jini Patel Thompson, the website’s author, to be as healthy and decent tasting as possible. I bought her book The IBD Remission Diet with details about the diet, which suggests making clear homemade broths to drink between shakes so you have something savory to drink as well. That sounded like a great idea which would make the diet more doable.

I made some broths and bought the shakes. I decided to do 3 weeks of the diet (plus phase in and phase out) starting the day after Thanksgiving so I could eat real food at Thanksgiving and Christmas. I thought I should get my Crohn’s doctor’s approval and she said it was ok as long as a dietician looked over the diet first and I had weekly blood tests. Her group’s dietician Sue was very helpful, telling me I needed a bit of extra salt as well as the shakes, which is not hard since I put it in the broths.

I’m continuing to take my supplements and probiotics along with the shakes and broth (and a little clear apple juice. Sue had said I should mix the shakes with olive oil or canola oil. The book recommends Udo’s Oil and I tried that for a few days but it seems to irritate my system so I’ve been using olive oil since then. Strictly speaking my diet is ‘semi-elemental’ since not all the protein in it is broken down into amino acids (it’s mostly whey isolate); that’s fine since studies have indicated semi-elemental liquid diets are also helpful for Crohn’s.

I was very nervous the first couple of days about whether I could handle being around the real food my family was eating. By the third day I was pleased to realize I could be around the sight and smell of their food and handle it ok. So I’ve been able to shop and cook for them without eating what they’re eating. I can’t say I never wish I was eating what they’re eating but much of the time I’m managing not to think that way. Being able to drink savory broths makes all the difference.

When I first made some of the broths they weren’t as clear as I had hoped even though I strained them through multiple layers of cheesecloth. Then I found out on the internet if you boil broth with a mixture of crushed egg whites and crushed egg shell that makes it clear (after straining the egg whites out). I tried it and it worked awesomely well with my chicken and turkey broths.

Being on a liquid diet I miss that ‘satisfied/full’ feeling you get after eating solid food but on the whole I’m not hungry as long as I’m able to space the shakes out fairly evenly. Which is possible except if I have to be out when it’s time to have one. I do feel more tired than usual in between shakes, probably because they don’t keep my blood sugar up for long.

The diet certainly isn’t making me worse and it might be helping. It will be easier to tell when I go back to ‘real food’. I am going to phase back into a restricted diet again since I think that was helpful for the three months before this. Most of the studies on elemental diets did not have the participants taking supplements and probiotics as well, nor did they have the participants being careful what they ate afterwards. I’m hoping these things will help me do better than people whose symptoms quickly returned after the elemental diet.

Other updates on what I’ve been trying lately to help with Crohn’s:

After five weeks of acupuncture I canceled the last appointment, realizing I wasn’t looking forward to it. Basically I was fed up with the needles. Various people said to me that it didn’t hurt, but I felt many of the needles going in and the ones in my ears particularly. Also I felt a bit sore afterwards for the rest of the day and had bruises for at least a week afterwards in some needle locations.

I decided to try massage therapy instead and I like that much better. Stress is known to be a contributing factor in Crohn’s so anything relaxing is helpful!

I was pleased to be able to stop taking Protonix some weeks ago, which I was taking as needed for mild ongoing nausea. I tried stopping it in the summer but felt nauseous after a few days so I went back on it. This time it went ok and now I feel less nauseous than when I was taking it, which is wonderful. (I’m still taking my main Crohn’s meds, Humira and methotrexate, as the same level I’ve been taking them for the last several months).

My Crohn’s pain level in general has continued to decrease this fall. It will be hard to tell how the elemental (semi-elemental) diet is affecting my other symptoms until I’m back on solid food.

My weekly blood tests have been fine during the elemental (semi-elemental) diet and it’s going ok but I’m glad I’m up to day 17 already. I will be very happy when I can start eating other food again! I hope I have the patience to phase in other foods slowly. Cooked carrots will never have seemed so exciting!

 

supplementsMy Crohn’s symptoms have been somewhat better since about March, which I’m very pleased about.

I’ve been on Methotrexate 25mg and Humira 40mg weekly injections for about a year now.

I started exercising regularly again around February. That has definitely made me feel better in various ways and perhaps has helped specifically with the Crohn’s as well.

I was hoping my annual colonoscopy in July would show improvement compared with the previous year but my doctor said I still have a lot of inflammation on my left side. I think the improvement might be because some other parts of my system are somewhat better.

I’ve been interested in exploring holistic/natural/alternative approaches to treating Crohn’s, but wasn’t sure where to go or if the cost would be huge (because insurance wouldn’t cover it). In June I did some online research and found out that Northwestern Memorial, one of the large hospitals in Chicago, has a Center for Integrative Medicine and Wellness which is covered by our health insurance for at least some of their services. So I could have a consultation with Dr Ring, the medical director, without it costing us anything. I made an appointment with her for mid-September (that was the first available!)

When I met with Dr Ring she said she had seen Crohn’s patients successfully helped to remission with such things as supplements, diet changes, acupuncture and homeopathic medicine. My heart sank at the sound of diet restrictions again, especially since it didn’t seem that they helped much in 2007, but I decided to try them again, at least for a while. The doctor recommended a protein/vitamin/mineral shake formulated to help with digestive issues (Mediclear) that came with a recommended three week ‘detox’ diet plan. After week 3 it suggests adding foods back one at a time, each three days, to see if I am sensitive to them. However Dr Ring suggested I avoid gluten, dairy and sugar for at least twelve weeks rather than just three. The detox diet also restricts eggs, soy, peanuts, corn and tomato. I might try adding some of them back after the three weeks to increase my food choices.

A restricted diet is doable if I focus on what I can eat rather than what I can’t, and make sure I have a variety of foods and drinks at home I like a lot, that I can eat. I take an allowed snack with me when I go out for a while to make sure I don’t get hungry and have to find something allowed while I’m out. Being hungry wouldn’t be the end of the world under normal circumstances, but I tend to get nauseous when I’m hungry, maybe because of Crohn’s, so I try to have a snack available. Also it’s much harder not to wish I could eat restricted foods if I’m around them when I’m hungry.

On the whole it’s best to avoid foods that are at all processed because they include substances not on my diet. Even things like enriched juices and milk substitutes tend to include soy or corn derivatives. If I’m not super-sensitive to those it probably doesn’t matter if I have a little, but if I do keep having small amounts and I do happen to be super-sensitive some of my symptoms won’t go away.

Dr Ring did comprehensive blood tests and suggested a vitamin D (D3 actually because it’s more easily absorbed) and zinc supplement because my levels of those are low and they’re important for digestive healing. Also turmeric and fish oil (EPA+DHA) because they have anti-inflammatory properties.

I asked her about acupuncture and she believes it helps so I’ve started a course of acupuncture, one treatment a week for six weeks to start with. Ania Grimone, the acupuncturist I see, is at the same center but unfortunately our health insurance doesn’t cover acupuncture. I’ve heard it doesn’t hurt which has mostly been my experience, however it does hurt when Ania puts needles in my ears. She said that’s because they are large intestine points and I have inflammation there. She said they wouldn’t be reactive if I didn’t have any inflammation. After each of the two treatments I’ve had so far, Ania has put something like tiny band aids with balls in the middle over some of the ear acupuncture points and said I should press them gently when I think about it. Ania also recommends a restricted diet and is experienced with Chinese medicine, so at some point she might suggest some herbs.

My Crohn’s doctor, Dr Mutlu, is open to me trying alternative approaches as long as I stay on the conventional meds while my symptoms continue to be serious and as long as I run suggested supplements by her so she can look up possible interactions with my medications first. I’m glad she is so open to them.

It’s been a bit frustrating that it’s hard to find specific and consistent information on natural approaches to treating Crohn’s. A couple of days ago I was excited to run across a website I hadn’t seen before by Jini Patel Thompson called Listen to Your Gut. The free information on here seems much more specific and tailored to Crohn’s and well-researched than what I’ve found elsewhere and I’ve ordered Jini’s book. I’ll be interested to see what she says about diet when it arrives.

I just started taking probiotics as well. I tried a while back and couldn’t tell if they helped but based on information from Jini’s site and other places I don’t think I was taking enough to make a difference anyway.

I don’t actually know if any of these alternative approaches will help, but they are a lot less risky than the meds and the meds have not been super-effective anyway. It seems plausible to me that with persistence perhaps I will see improvement over time through natural/holistic/alternative approaches which address any deficiencies and imbalances that could be contributing to the Crohn’s symptoms. It seems worth trying especially now I’ve tried most of the conventional medical options out there.

 

Recently Esther has been crocheting Amigurumi animals – this is her penguin:
Amigurumi Penguin

If you have a facebook account you can see more of them here – Esther’s Amigurumi facebook album

 

Esther playing violinBen and Esther played in a violin recital on Saturday. Esther played the 3rd movement of the Korngold Violin Concerto and Ben played the 1st movement of the Tchaikowsky Violin Concerto. They will also be auditioning for their high school concerto competition finals next week with these pieces.

Here are the videos (click below to play)

Download Korngold
Download Tchaikowsky

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