Guest post by Ashleigh Mould
So, you’re sitting in a doctor’s office after months of stomach pain, blood in your bowel movements, and crazy fatigue. You’ve been through the blood tests, the exams, and the colonoscopy that you thought was only for people over fifty. You hear the words: “we think you have Crohn’s Disease.” You’re not positive, but you think you’ve heard of this before – your cousin’s friend has Crohn’s. You’re also pretty sure that there is no cure.
After a diagnosis of Inflammatory Bowel Disease, shock might be the first thing that you feel. After that wears off, the concern about how you and your physician are going to treat the disease is next.
As a Crohn’s patient, I’ve been through a relatively large number of the medical treatment options that are currently available. I’ve been lucky enough not to require surgical intervention thus far, so I’m talking strictly about medication. Here is a breakdown of the good, the bad, and the ugly.
Most people with IBD will read that word and react with a shudder. Prednisone, also known as “The Devil’s Tic Tacs,” is a first-line steroid treatment. The good news is that it is an extremely potent and effective drug that combats inflammation very quickly. When I have periods of active disease, prednisone is immediately prescribed. I can attain relief from the worst of my symptoms in a week or two. Short- or longer-courses may be prescribed depending on your symptoms. Longer courses of prednisone require a slow taper to wean patients off the drug.
These can last months.
Now for the bad. Well, what can I say? The list of negative side effects of prednisone is pretty lengthy. It can cause insomnia, night sweats, intense hunger, heartburn, weight gain, and less-than-desirable hair growth. Ever heard of “roid rage?” Yeah. It’s a thing. Longer-term steroid use can also lead to osteopenia or osteoporosis as they inhibit calcium absorption, as well as issues with your adrenal system.
As un-fun as the mood-swings, moon face, and constant hunger are, when given a choice between the pain and misery of a flare, I would choose prednisone every time. It’s a necessary evil, but not a long-term option.
This drug is another first-line treatment that can be tried before moving to the big guns – the biologics. More on those below.
Azathioprine is a systemic immune-suppressant drug that is also given to transplant patients to prevent rejection of a new organ. In a similar vein, it helps prevent the faulty immune response behind Crohn’s from attacking the gut. It can be a very effective treatment for some, and can work to control disease for years. Personally, I took azathioprine in pill form for about a year and a half before I had to move to a different treatment option. It can of course cause some side effects. The big ones for me were nausea after taking my dose, hair loss, and sensitivity to the sun. If you find yourself taking azathioprine, please take safe sun exposure precautions.
We’ve arrived at the biologics.
When azathioprine stopped working for me – as evidenced by lots of active disease and ulceration in my terminal ileum – my gastroenterologist started the process to get me on Humira. I say process because “blockbuster” drugs like Humira really do require a lot of paperwork, testing, and negotiation with various parties to get started. The key feature of biologics besides their efficacy in treating Crohn’s Disease is their cost. Applying for coverage through a private health plan or the Ontario Government’s Trillium Drug Benefit program are a necessity for most people, as the annual cost of treatment is around $30,000.00.
As daunting as that sounds, Humira helped me achieve true remission for the first time since diagnosis a few years before. The drug is administered by subcutaneous injection due to the size of its molecular structure. If it were in pill form, normal digestion would break down the molecule and make it useless.
Humira is also a systemic immune-suppressant, which means that infections are a very common side effect. It is much easier for patients to catch illnesses, and they take longer to resolve. The self-injection aspect may also be a challenge for some, as the volume of the injection itself means pokes are kinda painful. Taking Humira also means that you must be organized: renewals must be picked up on time to avoid going off schedule, the syringes/injector pens must remain chilled, additional supplies are required, and the logistics of travelling with Humira must be considered.
Unfortunately, due to an unrelated, but fairly critical health issue, I had to stop taking Humira because of its immunosuppressive effects.
After we discovered that I would need to stop Humira, my gastroenterologist recommended Entyvio. Unlike the other drugs, Entyvio does not suppress your whole immune system. It has been engineered to be gut-specific, so issues like infection are much less pronounced.
As with Humira, Entyvio falls within the very expensive cost category of around $30,000.00 per year. It is administered as an IV infusion given every eight weeks following three loading doses. To receive treatment, I now visit an infusion clinic in my city. After the drug mixes with saline for about 30 minutes, I have an IV placed, and sit in a big comfy chair with an episode of The Office on my phone for the second 30 minutes of infusion time. So far, I have not experienced any side effects, and Entyvio has been very effective for me. I am aware that others experience fatigue for a day or two following their infusions, and that joint pain can also be an issue for some.
Side effects and other symptoms related to active disease mean that I’ve taken a number of other medications for treatment. These are some that you might encounter:
Lansoprazole: for treatment of acid reflux caused by prednisone. This drug is gentler on the guts of IBD patients than others.
Celecoxib: a mild anti-inflammatory painkiller for treatment of joint pain due to active disease. If you are experiencing joint issues with Crohn’s, speak with your doctor about seeing a rheumatologist.
Calcium/Vit D supplements: to combat issues with their absorption during courses of steroids.
Iron supplements: to ensure iron stores are replenished after loss due to bleeding in the gut.
Antibiotics: to fight infections acquired while taking immunosuppressive drugs to treat Crohn’s.
Now, obviously I am not a doctor. Nor do I know everything there is to know about these drugs – I only know my own experience. As I write this, more medications are being researched and developed to use for treatment of Crohn’s and Ulcerative Colitis. While hopefully we will find a cure in our lifetimes, just having more or better medical options would be amazing in the fight.
If you have any questions about the drugs mentioned above, talk to your doctor. Start a discussion. Try what you both feel will work well for you. Most importantly, never give up, or feel that you are alone in this. At the very least, you and I are in it together.