13 years of Remicade behind me

I started Remicade in February 2004. If I had a child as old as the length of time I’ve been on Remicade, he or she would be entering high school in the fall.

Posted in biologics, Remicade, Uncategorized | Leave a comment

What? I’m not sick?

I should probably be knocking wood here, but I haven’t been sick for almost 2 months, which must be some kind of record.

Unfortunately, my partner has been sick with a virus for almost two weeks now. We haven’t been able to see each other because we’re both afraid that I’ll catch whatever it is and get even sicker than he is now. I made him some chicken soup and left it on his doorstep. I wish I could do more to help him.

It’s hard to watch someone not doing well and feel unable to help. I wonder how often my friends and family feel this way about me.

Posted in immune suppression, partners, relationships, virus | Leave a comment

Just try harder

One of the things I hate very much about having a chronic/intermittent illness is that I can’t predict when I’ll be well enough to do the things I’d said I’d do or that I’d like to do, and when I’ll have to bail because of poor health. Aside from not being able to have a full-time job and having to miss out on many social occasions, there’s also the guilt that comes with the part of our culture that says to push on through illness and to just try harder — everything will work out in the end.

No, it won’t.

I spent years working myself into the ground, working so hard to disprove people who thought I was making symptoms up or trying to avoid work, that I ended up much sicker, and sick more often, than I now know I could have been.

In order to minimize the amount of time I spend being sick takes a lot of effort. I have to plan certain aspects of my life not only around when I’m going to get treatment, but around statistical calculations in my head about how frequently I’m going to be unable to work as my medicine wears off, and how likely it is that I’ll get sick for x number of days between now and some time in the future. I have to pay close attention — while avoiding getting too obsessive! — to how I’m feeling mentally and physically, and what I eat, and how much exercise I get, and how much sleep I get over periods of hours, days, and weeks. And I have to juggle my erratic freelance work schedule and my partner’s schedule on top of all of this, too. In other words, I have to be very organized, very flexible, and on top of many things all the time to get anything done.

It also takes a certain amount of effort to target paid work that brings in maximum income for minimal hours, with the tradeoff that, during the hours I work, I must put in a lot of effort and concentration. So when I’m not at work, I’m often “at work” recovering — so that I can continue to work.

And still, not being able to stick to a regular schedule makes me feel like less of a person. The narrative goes that anyone who can’t put in the hours, or show up on time and on a regular basis, is disorganized and/or lazy. I’m neither disorganized nor lazy, but I think that people are going to look at my lack of consistency in scheduling and think that I am.

People familiar with my work but not my personal life often remark that I should have a more prestigious job than I have — and they may not mean to imply that I’m a failure, but the inference is easy to make.

Years of having my health concerns brushed aside and being told I was a malingerer, while I was suffering from obvious Crohn’s symptoms, feed into this idea that I’m not really *that* sick. Plus, I look normal. I look especially normal on the days that I’m well enough to be out and about. When I’m not feeling well, I’m at home resting or sleeping. Only the people closest to me know what’s really going on. And those people know that I would rather have the energy to get outside and get things done than to have enforced quiet time. But only by slowing down and learning to recharge when I have to can I have a chance to work and play the way I want to.

If society’s ideal is a workhorse, I’ll just have to get used to being a cat. You can find me over here, asleep in a tree.

Posted in accommodations, bias, coping skills, difficulty concentrating, disability, fatigue, food, friendship, hidden disability, immune suppression, organization, partners, planning ahead, relationships, relationships with colleagues, relationships with family, relationships with medical professionals, social life, unpredictability, work | Leave a comment

Bring on the dairy!

A number of people, even doctors, have expressed surprise that I don’t have problems digesting dairy products. There is a common belief that people with Crohn’s are lactose intolerant.

Lactose is broken down by lactase, and lactase is produced in healthy epithelial cells in the small intestine. (The exact kind of epithelial cells involved are called enterocytes). When a person’s small intestine is very inflamed and/or ulcerated, these cells can’t do their job, and lactose intolerance develops. But when inflamed or ulcerated patches are separated by healthy tissue, a person can still break down and absorb dairy products containing lactose — assuming that they’re not lactose intolerant to begin with.

There have been times when I was very ill that I have been temporarily lactose intolerant. It took weeks to months after successful treatment for the damaged cells to grow back. When I was at my worst, I couldn’t even handle butter even when I took lactase pills with my food.

Right now, though, I can still eat dairy products without bloating or feeling ill — though I can’t say the same about most vegetables.

Posted in food, lactose intolerance, ulcers | Leave a comment

Colonoscopy allergy mystery

In June, I posted about being sent for drug allergy testing to see if I could use anti-inflammatory painkillers that I’ve had allergic reactions to before.

I went for the testing about a month ago. First off, the doctors at the drug testing centre did not want to test me for allergies to NSAIDs because I had reacted to them several times. The last time I was exposed to any was over 20 years ago, but because I had reacted to several different drugs in this class, they were pretty sure that the allergy is real. Allergies to these drugs tend not to go away over time, so testing me for them would be too risky.

Instead, I was tested to see whether I was allergic to two different medications given to me during a colonoscopy 11 years ago. I came to from that colonoscopy to realize that I was scratching my arms. I kept trying to call the nurse, saying “I’m having an allergic reaction!” over and over, but people coming out of anaesthesia often say crazy things, so she didn’t pay attention. Finally, when the nurse came over, she saw that my arms were covered in hives. I ended up being treated with a high dose of Benadryl and waking up about 8 hours later. (In retrospect, I think that the remaining anaesthetic and Benadryl in my system must have been more powerful together, because even high doses of Benadryl usually don’t keep me completely knocked out for that long).

The medications I had been given, fentanyl (an opioid analgesic) and midazolam (the actual anaesthetic) is the most common combo used for colonoscopies. Apparently they have fewer side effects and are safer to use than the older drugs. For the next decade, every time I had a colonoscopy I had to arrange in advance to have valium or demerol instead, and it kept getting harder and harder over time because hardly any hospital stocks them anymore, the older anesthetists familiar with using them are retiring, and the younger ones don’t feel confident in using them.

Even though my allergies to fentanyl and midazolam were noted in my chart, and even though I called the clinic in the weeks and days before my last colonoscopy to request valium or demerol because of the allergies, there was still somehow enough of a miscommunication at my last colonoscopy such that the drugs I knew I was safe with weren’t on hand. The anesthetist ended up proposing to “experiment” with something else, and I agreed — it’s no fun going through prep more times than necessary! I had understood — correctly — that the anesthetist wanted to try using a drug he was familiar with but that isn’t normally used during colonoscopies. The drug worked, but, seriously, most other patients would probably be horrified to hear those words when they’re lying on the gurney, ready to undergo a procedure.

Anyway, I’ve had many allergy tests in my life but the one I had to fentanyl and midazolam and latex (just in case!) were all negative. It was the most anticlimactic allergy test I’ve ever had, and it was great to know that there’s one less thing for me to worry about the next time I have to have a colonoscopy!

On the down side, it does mean that I reacted to something else during that colonoscopy 11 years ago, something that we still haven’t identified. I have a good idea of what it might have been, and I’ll still have to talk to my GI about my suspicions before I have the next colonoscopy. But at least it should make arranging things less of a nightmare next time.

Posted in allergies, colonoscopy, diagnostic tests, hidden disability, organization, planning ahead, relationships with medical professionals | Leave a comment

Scary times

Hi everybody. I haven’t been posting for a while because I’ve been sick a lot. Some of the time I was sick from colds being passed around because of the new school year, but some of it was Crohn’s.

Twice in the past year, I’ve had Crohn’s symptoms that persisted even after I received Remicade. I think of these periods as bad treatment cycles in which the Remicade didn’t “take.” I didn’t get sick enough to be hospitalized, but I was sick enough to not be able to work or buy groceries or cook food or do things with friends or family.

It’s happening again. I had my last treatment two weeks ago today and I’m still having diarrhea, despite being on an extremely bland diet without — just seafood, chicken, starch, nut butters and dairy products, as well as cooked apple, cooked carrot, and banana. I wish I could eat something fresh and crunchy. I also had a day of complete fatigue the week after I got the Remicade. While I’m quite familiar with days like that, they’re much more typical in the last two weeks of my treatment cycle. They’ve never happened right after treatment before.

When I last talked to my GI, in September, she was concerned about this trend. She arranged to see me in 3 months instead of my usual 6, and told me to call if there were problems before then. I called.

I also called my GP to see if, maybe, my symptoms are from food poisoning or some other GI bug — it would be careless to change my treatment plan if the problem turns out to be a virus or a bacterial infection that’s relatively simple to treat. But instead of doing a stool culture, my GP just wanted to check me for anemia, even though I’m already on iron pills and not losing any blood. (I have the feeling that they heard the word “fatigue” and focused on that, rather than on anything else I said).

I’m still waiting to hear back from my GI. I really hope I can get an appointment before complete holiday craziness sets in; if my symptoms are this bad this early in the treatment cycle, I’m worried about how bad things are going to get right before my next treatment, scheduled for immediately before the holidays. Most specialists are on vacation at that time. . .

Posted in biologics, coping skills, diagnostic tests, fatigue, food, frustration, gut problems, immune suppression, organization, planning ahead, relationships with medical professionals, Remicade, treatment, ulcers, virus, work | Leave a comment

Tired and frustrated

I am tired. I had Remicade and my steroids last week; usually steroid withdrawal is over by now. But yesterday I was completely in withdrawal mode: unable to concentrate, light-headed, physically tired, clumsy. Today I just want to crawl back into bed. I’m not sure how much of this is withdrawal and how much is depression related to being pulled out of a “normal” life all the time and being unable to concentrate.

My medical team has suggested two things to try to improve the situation. The first suggestion was for me to try to keep a regular schedule. I almost laughed at this one — it is nearly impossible. I’ve been trying to do this for years, but I found that resting when I feel I need to lie down is the best way to salvage a certain level of alertness the rest of the time, even if I don’t have the focus energy to be able to work. Afterwards, when I thought about this suggestion, I felt somewhat angry because it has a bit of the implication that I haven’t been trying hard enough, even though I know that’s not what the medical team meant.

The second suggestion was to try modafinil to help with the tiredness, and methylphenidate (Ritalin) to help with the lack of concentration. (I’ve tried Ritalin a few times but, on its own, it doesn’t keep me awake). There’s hardly any research on modafinil and Crohn’s. I’m afraid that these medications may mess me up even more. It’s extremely frustrating to not be able to use my mind the way I used to, or to be able to work without getting exhausted, though, so I may try it.

In the meantime, I just want to crawl under a rock.

Posted in coping skills, disability, fatigue, frustration, hidden disability, organization, relationships with medical professionals, steroids, unpredictability, withdrawal, work | Leave a comment

Exceptional Access Program 4-month backlog

There was a bit of confusion at the pharmacy when I went in for Remicade yesterday. I was billed a dispensing fee for the very first time; usually the EAC covers the entire fee and Janssen covers my deductible, so I knew that something was not right in the system. I called my Remicade coordinator to find out if there were any nasty surprises on the way. She told me that the EAC has a 4-month backlog and that Janssen is supplying Remicade at no cost to patients who are caught in the backlog so that we can get our treatment on time. (Thank you, Janssen!)

I continue to be amazed at the EAC. They are chronically understaffed. I wonder whether the people who work there are quitting out of frustration, making the understaffing worse. Seriously, I wish they’d just get their act together, hire the people they need to hire — there’s no shortage of qualified and underemployed people in Ontario — and stop putting people’s health at risk. (Not all the drug companies are necessarily as generous as Janssen at dispensing medications without hope of reimbursement).

Posted in bureaucracy, Exceptional Access Program, frustration, government policy, Remicade, treatment | Leave a comment

Disability Tax Credit — falling through the cracks again

Canada’s Disability Tax Credit is supposed to help lower the tax burden on “persons with disabilities or their supporting persons.” Registered disability savings plans (RDSPs) are also available to people who qualify for the tax credit to help fund the long-term care of people who qualify for the disability tax credit.

Note that, if I didn’t have my family supporting me financially, I would not be able to afford to work because my income from work is too low for me to support myself. Instead, I’d have to be on the Ontario Disability Support Program (ODSP). If this were the case, I would not be permitted more than $5,000 of assets (savings) because I don’t qualify for the Disability Tax Credit or an RDSP. As I pointed out before, that is one Remicade reimbursement mistake.

Here’s why someone who has trouble working 14 hours a week because of severe fatigue, who gets sick frequently and unpredictably, often for weeks at a time, and who misses 5 days of life every 6 weeks regardless of other health issues because of steroid-related side effects does not qualify for the Disability Tax Credit.

In order to qualify, a person must meet at least one of 3 criteria. The criteria are that a person must have either

  1. impairment in physical or mental functions [that has] lasted, or is it expected to last, for a continuous period of at least 12 months

    — so intermittently manifesting problems like those associated with Crohn’s, epilepsy, and MS would not count —

or, 2. be on life-sustaining therapy,

or, 3. need help with basic activities of daily living.

Life-sustaining therapy is defined as therapy that meets both of the following conditions:

  • the therapy is needed to support a vital function, even if it eases the symptoms
  • the therapy is needed at least 3 times per week, for an average of at least 14 hours a week [original bolding]

OK, fair enough; although people on biologics meet the first criterion, the second criterion is too restrictive to include cases like mine.*

Also, many people on biologics are able to work enough hours to support themselves. I was, too, until the combination of fatigue and viral illnesses got really bad in recent years. And I can perform the basic activities of everyday living (seeing, speaking, hearing, eating, going to the washroom, dressing myself, walking and performing the mental functions necessary for everyday life) unaided.

I and people in similar situations therefore do not qualify for the Disability Tax Credit. But what about the fact that I’m not able to support myself financially anymore because of a health-related disability? Shouldn’t this situation be covered? What about others in very marginalized work situations because of other intermittent and unpredictable disabilities, such as epilepsy or MS? For people with intermittent and unpredictably manifesting disabilities, having no predictability in terms of being sick or well is a significant barrier to employment — especially when so much employment these days is at-will, and good attendance is vitally important to keeping a job!

It seems bizarre that a program meant to help support people with disabilities excludes people with intermittent disabilities, when the intermittent (and unpredictable) nature of certain disabilities is what prevents us from having steady employment in the first place.


  • For what it’s worth, 14 hours a week is 8.33% of a person’s time — that’s 14 hours out of every 128 hours in a week. I go through Remicade-related treatment and withdrawal for, let’s say, 4.5 days out of every 42, which is 10.7% of my time. But this disruption obviously doesn’t count.
Posted in bureaucracy, disability, fatigue, finances, government policy, immune suppression, symptoms, taxes, unpredictability, virus, work | Leave a comment

Fatigue

I was up for several hours last night with gut problems so I’m a little out of sorts today.

This got me thinking about how much I’ve been able to work in the last while. I made this chart showing the number of hours I’ve been able to work on average on weekdays when I’m not sick. The number has dropped a lot since I was an undergrad.

Back then, I would often start work at 10 am — after having breakfast and exercising(!) — work until 5 pm or so, cook dinner, and then work again from 7 to 9 pm. That’s about 8.5 hours a day, assuming half an hour for lunch. Sometimes I did other stuff, too, so let’s say I worked 8 hours on average per day.

There were a few years of complete instability pre-diagnosis when I was very ill, and then when I was on varying doses of steroids for a few years. Once I was steadily on Remicade, though, I could still work in archives from 9 to 5 every weekday, with around an hour off for lunch. That’s a 7-hour work day.

When I was working in industry, after I came back from an overwork-induced sick leave, I worked 6 hour days. That schedule was OK for a few years.

During my postdoc, I definitely worked less than that. More than 5 hours a day would wipe me out. I probably averaged around 3.5 or 4 hours per day of work.

These days, one of my jobs has a cap of 14 hours a week. I often can’t even work that many hours before I have to lie down for a while. That’s an average of less than 3 hours per work day! Some days, of course, I feel fine and can do a lot of work. 3 hours of work in a row is a decent day, though, and 5 is a big deal.

Maximum number of consistent hours of work per day (1999-2016)

Maximum number of consistent hours of work per day (1999-2016)

Fatigue and Remicade

I’ve also included the frequencies of my Remicade treatments in this chart. My dose per kg has stayed the same for the entire time. The increased frequency of Remicade treatments is correlated with an increase in Crohn’s problems. In fact, the change from Remicade every 7 weeks to Remicade every 6 weeks took 2 years to get approved.

So is there a correlation between Remicade dose and/or frequency and levels of fatigue? Well — the scientific literature is not clear about it.

There are not many long-term studies of people with Crohn’s on biologics. A lot of studies say they’re long-term, but then they turn out to be for only a year or so!

My gastroenterologist has told me that gastroenterologists are aware that patients who have been on biologics for years tend to get more and more fatigued. It’s not clear, though, whether the fatigue comes from the disease, the treatment, or some combination of the two. But at least now, doctors are recognizing that fatigue is a serious and pervasive symptom in Crohn’s and that more should be done to study it, especially because doctors are really not sure what to do about it. (For instance, Cochrane Reviews has released a protocol for studying interventions for fatigue in Crohn’s, but the actual study has not been done yet).

In the meantime, I’m hoping that the curve in the chart above will level off. I don’t want to stop working, I don’t want to stop living, and fighting fatigue is, well, tiring. This vicious circle is the worst!

Posted in Crohn's research, disability, fatigue, gut problems, Remicade, symptoms, treatment, work | 1 Comment