I was browsing an IBD forum when I saw a thread asking if others ever forgot to take their medications. Intrigued, I clicked and found the author was referring to that kind of selective forgetfulness so useful when avoiding any number of unpleasant tasks.

For example, I rarely overlook the last piece of chocolate cake cunningly concealed at the back of the fridge, but may forget, until it is too late, the new exercise regime I was starting first thing Monday morning (oh well, there’s always the next day).

It seems I am not alone. The thread quickly swelled as others sheepishly admitted to this secret rebellion…

Why is it a secret?

• Because we are supposed to do everything the doctor tells us to.
• Because if we don’t then we ‘only have ourselves to blame’.
• Because people who don’t have to take 10 pills (or more) a day don’t understand why it is difficult/annoying/frustrating/boring.
• Because we feel guilty enough without a lecture from our doctor/parent/partner.

Why do we forget our medications?

It seems we are more likely to forget our medications when:

• we are in remission and feeling well
• we are taking a large number of pills each day
• the medication has to be taken at specific times before/after/during meals

But we are selective about which medications we forget. In the first instance, we drop the supplements like fish oil and multi-vitamins. After that we are more likely to skip those medications perceived to be ‘low potency’ maintenance drugs (like mesalazine) as opposed ‘high potency’ drugs (like prednisone or methotrexate).

What’s the real reason?

We tend to do the things we know are necessary, and treat the rest is optional.

Craig Harper on lifehack points out that we usually remember to take a shower everyday because, in our minds, it is a must do. It’s not an optional behaviour. Over time these also become habits ingrained in our daily routine.

If we know a particular medication is absolutely necessary, if it is relieving acute pain or diarrhea or is one which will cause uncomfortable side-effects if missed, we won’t forget to take it. It’s a must do.

But if we believe certain medications and supplements are optional – perhaps because their benefits are less immediate and tangible – then other factors come into play.

There is a part of us, especially those of us with a chronic illness, that resents the pills: resents these tiny daily reminders that we have a condition (probably for the rest of our lives) that we cannot control. And we want to rebel against them, just a little.

So what’s the answer?

I’m afraid I don’t have a neat five step guide for motivating yourself to take all your prescribed medications. No-one can make you do something you just don’t want to do.

It’s your body so make informed decisions and don’t let the occasional secret rebellion undermine your goal of good health.

Rebecca is a freelance writer. She provides smart, fresh writing for blogs, websites, newsletters and corporate communications. Contact Rebecca for all your writing needs: rebecca[at]beyondibd[dot]com

Two decades of scientific research has demonstrated the physical and psychological benefits of writing about our troubles.

Patients with serious chronic illnesses such as asthma, rheumatoid arthritis, cystic fibrosis, cancer and HIV, when asked to write about their most stressful and emotional experiences, reported the following benefits:

• improved immune function;
• reduced blood pressure;
• improved lung and liver function;
• reduced pain;
• fewer days in hospital; and
• improved mood. (see note 1)

The idea of delving into your emotions, and exposing them on paper, may make you feel uncomfortable or vulnerable. Although a journal exploring your thoughts and feelings will give the greatest benefits, there are other types of diaries which can help you manage your Crohn’s or colitis.

Food and symptom diary

A common recommendation for those with inflammatory bowel disease (and many other illnesses) is to keep a food and symptom diary. As every IBD patient knows, and the Crohn’s and Colitis Foundation of America (CCFA) confirms, there is no specific eating plan which works for everyone. Keeping a detailed food and symptom diary helps you identify the foods that bother you, and is an important source of information for your doctor and nutritionist.

Maintaining a minute record may become tedious over time, but even if you keep the diary for only a few weeks you will become more aware of what you eat and may uncover patterns in your symptoms. Example food diary.

Wellness chart

A wellness chart is an easy way to track your disease and general well-being over extended periods of time.

A variety of indices, such as the Crohn’s Disease Activity Index (CDAI), are used to measure disease severity. These primarily record objective data such as blood analysis and weight; however, there is increasing interest in measuring the impact of IBD on the patient’s quality of life.

You can devise your own chart and rating system, customised for your common symptoms and triggers, which will only take a few minutes each day to complete.

Once again this will be a useful source of information for your doctor, and will help you take a more active role in your health management. Perhaps more importantly, it will encourage a broader, more realistic perspective of your health. We all have good and bad days – on the worst days it can be difficult to see the light at the end of the tunnel. Your wellness chart will remind you that you’ve had better days and most likely will again. Example wellness chart.

Medical timeline

From your first diagnosis, keep a simple timeline of your treatment. At minimum include medications (with dosage), tests and results, and major events in your disease. If you can, also include names of doctors consulted and notes of your discussions.

Initially you will be able to recount all these details from memory, but as the years pass you will be surprised how quickly one test blends in with another, and you might forget the name of that particular medication you took for a month and then stopped because you had a bad reaction.

This information is particularly useful when you change doctors, or if you have to see a new doctor in an emergency situation. It will also be very helpful if you wish to assist with IBD research – I was disappointed that I could not remember more details concerning my initial diagnosis for a recent research survey.

Journaling or the one-sentence diary

Give yourself 15-20 minutes a day to write about how you are feeling and what has been happening in your life. Wake up 15 minutes early to make the time, or write just before bed. Grammar and spelling are not important; you don’t have to use sentences, or even words (you might draw a picture). If even this seems overwhelming start with a one-sentence diary.

Whatever form your diary or record-keeping takes, the key is to keep doing it! Set an achievable goal and don’t berate yourself if you miss a day – just be sure to do it the next. As you continue you will find it easier and once you have built a string of entries you will begin to see and feel the benefits.

Rebecca Leigh

References
1. Baikie & Wilhelm, “Emotional and physical health benefits of expressive writing”, Advances in Psychiatric Treatment vol. 11 (2005): 338-339

For me, four years of infusions adds up to more than 16 infusions and more than 16 hospital day admissions. Here are my top tips for making hospital visits comfortable and stress-free.

Note: These tips are based on my experience in Australian hospitals, primarily in the private system. Where I am, receiving infusions (medication by drip) involves being admitted to the hospital for three to five hours. I have read American sites which talk about patients receiving their treatments in more informal lounge style infusion centres.

1. Make your appointment early in the day

Although you may have to wait a little while for morning discharges to make beds available, you will be ahead of the crowd that always builds in hospital waiting rooms as the day progresses.

2. Clear your schedule

Even though you may be told that the treatment will take only two or three hours, do not schedule anything critical for your afternoon on the day of treatment. Hospitals are too unpredictable: there may be an emergency which takes precedence over your appointment; there may be a shortage of staff on the day; or there may be some mix-up with the pharmacy which means your medication takes longer to be sent up to the ward then it should be (all these have happened to me).

If you have somewhere to get to by a certain time you are only going to increase your own stress and impatience if anything goes wrong – and that doesn’t help the situation. Plan to take the whole day and if you finish earlier, be happy with your good fortune.

3. Pay attention to the process – be your own carer

Notice what happens during your treatment, and your routine observations. You shouldn’t be relying on the nurses to tell you what is normal (well not after a few times anyway), you should know what is ‘normal’ for you and be able to tell them!

4. Wear clothes that are comfortable, flexible and warm

In my experience, hospital air-conditioning is cold. And sitting (mostly) still on a bed for several hours doesn’t do much to warm you up. So take something to keep warm and be aware that once the cannula (drip needle) is in you will be more restricted, so make it something you can throw over your shoulders.

5. Be a patient patient

Sorry for the pun. Be sensitive to the fact that the staff who are assisting you may also be dealing with any number of other patients at the same time, some of whom may need more urgent attention than you. Please don’t be the loud, demanding, unreasonable patient who always wants to be first. Being agreeable will also endear you to the staff and mean that if you do have cause to complain you will be taken more seriously (cry wolf and all that).

6. Bring snacks and drinks

Nothing worse then sitting there hungry hoping that the hospital lunch is going to be edible this time.

7. Bring something interesting to do!

Channel surfing the hospital TV for five hours is guaranteed to leave you feeling groggy, even if the drugs don’t! So do something interesting, use the time to try something to haven’t done before (like drawing), or just rest.

I know others who are in hospital for longer stays will take their own bed sheets and pillows — do you have any tips for making hospital visits more comfortable?

Parasitic worm treatment for Crohn’s

This recent article on the use of parasitic worms in auto-immune disorders follows a series of news items released in 2004 on the effectiveness of pig whipworm for Crohn’s disease. The worms can be purchased direct from Ovamed (shipped to Europe, USA and Australia). Keah, who is a forum moderator on the HealingWell.com Crohn’s community, has a brief online journal on her experience using the pig whipworms (Trichuris Suis Ova or TSO).

What’s food got to do with it?

Medical News Today reports that a six-month programme has shown potential links between food intolerances and IBD.

Naturopathyworks offers some interesting suggestions on what your cravings for chocolate, fatty foods and more really mean – and healthy alternatives to satisfy them.

Learning more about medications

Prednisone is a corticosteroid which is an effective immunosuppressant and is used to treat many inflammatory diseases. However, it can have serious and permanent side-effects and I have heard doctors refer to it as a ‘dirty’ drug. Take the quiz at About.com to see how much you know about prednisone and then check out the medication side effects index for medications used in IBD and IBS.

For more detailed information check out the website of the very reputable Mayo Clinic – a not-for-profit medical practice located in USA (Arizona, Florida & Minnesota) which is dedicated to the diagnosis and treatment of complex illnesses. You can look up prescription drugs and supplements, and also read extensive summaries on a range of serious illnesses including Crohn’s disease and ulcerative colitis.

Recognise the problem (or itch)

It took me a very long time to realise that my sporadic sore throats were actually caused by ulcers and were, in fact, occurring at quite predictable intervals alongside other symptoms of my Crohn’s disease. I then concluded that, as my Crohn’s was already being treated with medication, the ulcers were ‘one of those things I have to suffer through’.

Of course that was not (and is not) true.

Find a solution (or anti-itch remedy)

I eventually asked my doctor, pharmacist and friends/family if they could recommend any remedies for ulcers. The first recommendation was an ulcer specific topical ointment which was difficult to apply (you had to dry the area first!) and impossible to get to those sores at the back of my mouth. I now use a anaesthetic / antibacterial mouthwash usually recommended to relieve pain following dental procedures. It relieves the pain (for a while) and I believe the antibacterial effect also assists with healing the ulcers more quickly. I also avoid foods likely to irritate ulcers. Such simple remedies to make myself more comfortable!

Any sustained discomfort, even if it is minor, can exhaust our physical and emotional reserves. ‘Putting up’ with mouth ulcers for two weeks or more left me tired and cranky; more likely to respond negatively to those around me; and more inclined to become depressed about my circumstances.

Gretchen says:
One habit I’ve developed as part of my happiness project has been to try to do a better job managing discomfort. Not letting myself get too hungry, too sleepy, too cold, or too itchy, makes it easier for me to stay patient and light-hearted.

This is good advice for anyone and particularly those with a chronic illness like IBD.

My 7 steps to improving day-to-day comfort

1. Be aware.

Over time we ‘tune out’ to physical complaints and become accustomed to higher levels of discomfort. This can mean we don’t respond as quickly as we should to the warning signals of our illness. Keep a health diary (more on this in a later post). Take a little time each day to quietly listen to your body and note any changes, for better or worse. Try to identify patterns.

2. Avoid assumptions.

Don’t assume that a problem is related to your IBD and therefore it is part of a chronic illness you can do nothing about. Equally, don’t assume that it is not related to your IBD and therefore there is no point mentioning it to your doctor. Keep an open mind and look for creative solutions (see steps 4 – 7).

3. Value your own comfort.

Don’t prematurely dismiss a problem as minor or not worth treating. I’ll say again, any sustained discomfort, even if it is minor, can exhaust our physical and emotional reserves. Think of it like a savings plan, don’t expend precious energy on problems which could be easily resolved by other means. Instead, build a healthy energy reserve for when serious health problems arise. Aside: In fact, the concept of building a healthy energy reserve will underlie many of the strategies discussed in future posts.

4. Be creative.

Having regularly observed your body and any patterns to your symptoms, and kept an open mind about the possibility of improving these symptoms, you have probably already identified some easy and practical ways to make yourself more comfortable. For example, if I don’t eat something every couple of hours my energy and mood can quickly spiral downwards. I carry a snack in my bag at all times so I won’t be tempted to buy something sugary which will leave me feeling sick later.

Be as flexible as possible – if you can’t address the problem itself, can you change the circumstances around it to make yourself more comfortable? For example, adjusting your schedule so you have more time to get ready in the mornings when you are feeling nauseous.

5. Ask others (local).

Depending on the nature of your problem, talk to your doctor (GP and specialist), pharmacist, friends and family. When you ask around you might be surprised to find that someone you know has had this problem before and they have developed their own solution. Don’t underestimate anecdotal advice, although ensure that the source is reliable. I have received great practical tips from the head nurse at a local IBD research centre. Her advice is not necessarily documented in medical journals but it is based on the experience of many patients.

6. Ask others (global).

This is similar to step 5, but with an additional warning to be cautious about online advice. I feel fortunate that I now have access to a much larger community of health professionals and IBDers through websites, blogs, forums and chatrooms, and so am more likely to find others who have had similar experiences to me and/or who may be able to offer me advice. However, I also remember to consider all this advice with cautious interest.

7. Don’t forget!

Make a note of what you did to make yourself more comfortable and how well it worked – in your health diary or somewhere you can refer to it again in the future. Next time you notice a similar problem, test and refine your solution / remedy.

The interview gives a brief overview of current thinking on Crohn’s Disease, touching on the common questions asked by the newly diagnosed and their friends/family, including:

• What causes Crohn’s disease?
• Is Crohn’s disease the same as Irritable Bowel Syndrome (IBS)?
• Is it contagious?
• Can you pass it on to your children?
• Is Crohn’s Disease related to diet?
• How do you diagnose Crohn’s disease?
• What prompts a flare or relapse? What happens to someone when they flare? Can you predict flares?
• What sorts of medications have been used to treat Crohn’s Disease in the past and what new treatments are emerging?
• What are the long term effects of steroidal treatment?

Within the available 24 minutes, Dr Borody does not explore any of these issues in great detail but does provide a basic summary from the viewpoint of a doctor at the forefront of gastrointestinal research, and also observes how the medical community is changing their thinking and treatment approaches to Crohn’s disease.

Worthwhile listening, particularly suitable for family members or loved ones who want to learn more – they will appreciate this relatively brief but very informative snapshot of Crohn’s disease.

From the interview …

… for many years it [the cause of Crohn’s Disease] was thought to be autoimmune but … now there is overwhelming evidence that it is caused by an infective agent called mycobacterium avium paratuberculosis (MAP) probably in the majority of cases … (at 0:57)

… we expect that if ultimately we can kill and cure MAP we expect ultimately to find a cure … (at 12:14)

… we have old way of thinking and new way of thinking, in the past we used to think of relapses and remissions … treatment is aimed at inducing a remission… with the new therapy with antibiotics we now get such complete healing that we can get prolonged disappearance of Crohn’s provided the patient takes the antibiotics, so the nature of the disease is being changed by the treatment … it’s just starting to take off … (at 12:58)

… the old therapy used to be immunosuppression … more recently immune modulators … these are aimed at reducing our body’s response to the infection that causes the inflammation … we are moving away from this and using we are more and more anti-mycobacterium antibiotics without any immune suppression … future therapy will be essentially antibiotics … (at 12:36)