At my January visit she’d said that might be possible at this one if I was doing well. I had blood tests a couple of weeks ago and my CRP was “under 5″ which is the lowest it has been in any recent tests! (The normal range is 0-8). Also my symptoms have not got worse since January; I think they are a little better. So I was hopeful that my doctor would let me reduce my medication more as planned and she did.

I’m having blood tests again in 6 and 12 weeks and seeing her again in 3 months.

I saw the holistic doctor last week (actually the nurse who works with her) and she was very pleased about my CRP.

I’m continuing on the same supplements (except I switched to Healthy Trinity capsules instead of the same brand of probiotics in powder form). I’m still mostly gluten and dairy-free but sometimes I have cheese. I’m also eating some tomatoes, citrus, red meat, peanut butter, walnuts, and some food with a little sugar in (gluten-free granola) – these are foods I was avoiding a few months ago. I don’t think there’s anything I react to in minute quantities, so it doesn’t seem like I need to worry about a little of something on my ‘avoid’ list now and then. The main problem is that ‘a little’ is less defined than ‘none’ and can tend to creep up and up.

I’m having massage every two weeks or so, which may help and is enjoyable even if it doesn’t .

Today for the first time in over 2 years I didn’t inject any medication. I saw my doctor a week ago and she said I was doing well enough that I could cut back my Humira injections from every Monday to every other week!

I was sooo glad to get back to ‘real food’ again after the 3 weeks shakes diet. I went back to my restricted diet (gluten, dairy and sugar free; no coffee, caffeinated tea or carbonated drinks; also limiting red meat, corn, soy, tomatoes, eggs) but it seemed like luxury compared to only having shakes and clear soup.

It didn’t seem like the shakes diet dramatically improved my health, but it certainly didn’t make it worse. In general I think the diet and supplements I’ve been taking since late September have been helping. I’ve been having regular blood tests to check the supplements aren’t causing any problems. I’m pleased that my CRP (an inflammation marker) has come down since late September and has even been ‘in the normal range’ a couple of times recently.

I’ll be seeing my doctor in a couple of months to see how I’m doing on less medication (and the diet and supplements).

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.

For the last few months my Crohn’s Disease has been a little better. That’s a reality I’m very happy about. A couple of weeks ago my Crohn’s Doctor did an internal exam. She only had time to make brief comments right afterwards, which were that the worst affected places didn’t look significantly improved from a year ago.

That was another reality and it conflicted with the first reality in a rather discouraging way. I had to work hard to hold onto the first reality, that I definitely have been feeling better, in order not to get discouraged.

My attitude, even though it’s all in my head, is also a reality. It affects my physical realities since stress is thought to affect Crohn’s and feeling discouraged or worrying about the illness is stressful. Also, I make more effort to exercise and eat healthily when I’m not discouraged, two things I believe might help to some extent.

In my follow-up visit after her vacation I’ll have more time to talk with my doctor. I think some of the places which weren’t the very worst have improved, which would make her observations less in conflict with how I’ve been feeling. I did ask her about that in the brief talk and she said it was possible, but she was more focused on what wasn’t better. I understand why but for the sake of my attitude, which affects so much else, I need to keep the reality of ‘what isn’t better’ in perspective and not let it push out all the other realities of my life.

In September my doctor wanted to change my medication since I was still having lots of symptoms. Out of the choices she gave me I decided to add methotrexate and go on prednisone short-term. Prednisone is usually very effective but it’s unwise to be on steroids more than short-term because of the side-effects.

I was on 40mg prednisone for four weeks, then it was tapered down gradually (which is necessary to avoid problems). I finish it in a week. It did help with the Crohn’s somewhat although it had some side-effects I didn’t like.

The methotrexate is a weekly injection (25mg). I was planning to have someone else do it for me but when I found out I’d have to go all the way downtown for that I asked the nurse to teach me how. I was nervous about the first one but it turned out to be virtually painless which was a huge help! It usually takes about 3 months for the methotrexate to have any effect. At around three months (about 3 weeks ago) my symptoms did seem to improve a bit, so I’m hoping the methotrexate is helping.

I’m continuing on a weekly Humira injection (a prefilled spring-loaded pen which is easy to use but not virtually painless). I’m also continuing on low dose naltrexone (4.5mg) at night. I take half an imodium twice a day except sometimes I experiment with not taking it when my symptoms are somewhat better. I just stopped it again this week to see how I am without it. I also take a multivitamin each day and half an iron pill since otherwise I get gradually more and more anemic.

At my doctor’s recommendation I had both flu shots. I’m pleased that although I’m immunocompromised by the medications I haven’t caught any colds yet this season – since if/when I do they will probably be worse and linger on because I’m immunocompromised.

I’m not doing anything particular about my diet except avoiding most red meat and avoiding eating a lot of fibre at once.