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.

I’ve been on Humira since late September and Low Dose Naltrexone since November 1. I saw my doctor Jan 9, not feeling very happy at the extent of symptoms I was continuing to have.

She talked about other treatments we could try, including two new meds her group is doing clinical trials for starting in a month or two. For now she wanted to increase the Humira to weekly instead of every other week and see me again in six weeks to see if that was helping. (Assuming blood tests she did that day showed nothing contra-indicating that plan). After my blood test results came back, she confirmed the Humira increase and also added Lialda and an antibiotic (Vancomycin) in case of infection. At my appointment she suggested I take 1 Imodium daily, which is an over the counter med. I had started taking 1/2 after my visit in December but she thought I increase it to 1.

I’d stopped taking multivitamins in the fall. My Jan 9 blood tests showed I’m anemic so I’ve started taking them again plus extra iron. The doctor’s list of all possible treatments that have been at all effective included the probiotic Saccharomyces Boulardii. I found some at Whole Foods, so I’m taking that too.

It seems that I’ve had less pain over the last 1-2 weeks which I very much appreciate. The weekly Humira hasn’t even started yet – tomorrow will be my first injection just one week after the previous one. Maybe that will help even more – I hope so!

I called my doctor’s office the following Monday to see if I could stop them. That was also the day of my weekly blood test to monitor my Imuran levels.

The doctor called later and asked me to stop everything because my blood test showed abnormally high liver enzymes. She said it could be a drug reaction and I was certainly hoping it was since I have enough wrong with me already . She asked about me taking Tylenol – I now realize that even amounts that don’t exceed the recommended maximum dose can have that effect on liver enzymes, but I didn’t know that then.

She had me have daily blood tests that week and stay off medication. My liver enzymes happily dropped and by the next Monday when I had an appointment with her they were back to normal.

I had been scheduled for the next Remicade treatment that Monday (15 days ago) but the doctor suggested I try Humira instead to see if it might be more effective. The two act similarly but Humira is taken by self-injection every other week. I chose Remicade first because I didn’t like the sound of that. Anyway I was ready to try something else and live with the self-injection.

On day 1 it’s four injections, then two on day 15, then 1 every 2 weeks after that. The nurse did the first two and I did the second two. I’m using the “pens” (that’s a euphemism – since when did pens have needles in??) which you press the end of, they go “click” and it does the rest for you.

Day 15 was yesterday and I did the two pens myself at home. It hurts somewhat for a few seconds while the medicine goes in but goes away very soon after that and I haven’t had any pain afterwards.

I’m cautiously optimistic that it’s helping more than the Remicade was. The last 2 weeks my symptoms have been in the ‘better rather than worse’ range. Even if it is helping I think it will take a while for my system to quiet down and start to heal.

My doctor said I could go back on an Imuran-like medication also once blood tests established it wasn’t responsible for the abnormal liver results. I had said I didn’t want to go back on Imuran because that was making me nauseous; she said another similar medication might be better in that regard. But I declined because I don’t want to be on two medications that suppress my immune system and end up in the hospital again.

One thing I’m very interested to try is Low Dose Naltrexone (LDN). I’ve been reading about it the last couple of weeks and it sounds very promising as a treatment for Crohn’s. It’s much cheaper than Humira and seems less risky. It’s in stage 2 clinical trials so it’s still off-label, but can be prescribed.

I’m going to ask my doctor about it at my next appointment, which is on Monday. It seems like I would need to stop Humira in order to try it because they seem to act oppositely. Which I don’t expect my doctor will want me to do if Humira is working, or at least not until it’s been given a fair trial. But maybe she will think it’s ok to take both together. I’ll find out next week.

A month ago my doctor decided I should go on Remicade based on the condition I’m in. My symptoms are inconvenient rather than dishabilitating, but they’re at a level where they’re likely to lead to serious internal complications if an effective treatment isn’t found.

It’s taken a few weeks to get Remicade approved by the insurance company, but they did agree to it on Monday and my first IV infusion is scheduled for tomorrow.

This has to be administered by a 2-3 hour IV infusion because it’s a protein. Proteins taken orally get broken down if it went through the digestive system. After the first three treatments it only needs to be done every 8 weeks. (Another similar treatment – Humira – involves injecting myself every other week but I’d rather have an IV every eight weeks)

Crohn’s is an autoimmune disease caused by the body fighting against itself. That results in a lot of inflammation that isn’t present in healthy people. Remicade binds to the substance which controls the immune response. That suppresses the immune system response and the inflammation goes away. If you’re interested you can read more about it here.

It’s expensive because it takes several months to make – it has to be ‘grown’ from mouse cells. Or something like that. That’s what the manufacturer’s blog says.

Controlling unwanted inflammation by controlling the immune system response is good except when you get sick and need an immune system response. I won’t be looking forward to the first time that happens.

By the way, I’m still interested in knowing if diet helps but so far I haven’t been able to determine if it does and my doctor’s recommendation is, let’s get you better, then you can experiment with diet if you like. Although she also wants me on this long-term so the symptoms don’t come back. And if you go off it it might not work if you restart it. So I’m not sure how all that fits together with experimenting with diet.

I was scared of going on strong drugs (or biologic therapy) because of the risks but I think I’m pretty much reconciled (resigned?) to it now.

Remicade seems to work well for a lot of people with Crohn’s Disease. I’m hoping I’ll be one of them!