May is IBD Awareness Month, and on the 19th, World IBD Day.
For the uninitiated, IBD = Inflammatory Bowel Disease and includes three incurable illnesses; Crohn’s Disease, Ulcerative Colitis and Bowel Cancer. Any form of awareness for these much misinterpreted conditions is absolutely vital in helping others understand the complexities of them and in helping us get closer to finding a cure. So although I’m sure most of you who read my blog are more than aware of what my fellow sufferers and I go through, it never hurts to educate those who perhaps aren’t quite as clued up...
These illnesses are ‘autoimmune’ diseases; which basically means that our bodies are attacking themselves. Our immune systems’ are trying in vain to fight back, which unfortunately results in a constantly losing battle. Some of the more delicious symptoms of IBD are; excruciating abdominal pain, severe weight loss, sickness, anaemia, chronic fatigue, hair loss, our bowels becoming swollen and ulcerated, painful strictures and holes in the bowel forming through the abdomen (fistulas).
There are currently no cures for these conditions, only treatments, most of which come with an array of horrid side effects. It can be incredibly difficult to find the right fit of medication for each patient as the symptoms and extremes of them in IBD differ greatly from person to person. These treatments can vary from supposedly straightforward anti-inflammatories and/or steroids to injections the patient can, in most cases, administer themselves (these are a mild form of chemotherapy). Side effects of drugs used to treat IBD include; weight gain, painful bloating, swollen face, aching joints and muscles, insomnia, ulcers, anxiety attacks, memory loss, nightmares, constant hunger, heart palpitations, constipation, cramps, pain in the abdomen and various other parts of the body, confusion, and hallucinations. Mental health problems such as depression can also occur if patients are on these drugs for long periods of time.
Myself, after trying Prednisolone (commonly considered the bad-guy of the steroid world), Pentasa (slow-release tablets and granules), a completely liquid diet (unfortunately not the 40% proof stuff), countless other medications, and finally surgery to remove the most badly affected part of my bowel, I’m currently on another tasty drug called Mercaptopurine.
Some of the many unpleasant side effects of this drug include diarrhea, nausea, vomiting, loss of appetite, darkening of the skin, immense fatigue, weakness, skin rashes, stomach/abdominal pain, and hair loss. More serious adverse reactions include mouth sores, fevers, sore throat, finding you bruise or bleed more easily, yellowing of eyes or skin, and painful or difficult urination. Mercaptopurine also causes ‘myelosuppresion’ which basically means it suppresses the production of white and red blood cells. It can also be toxic to bone marrow, so patients who take it are required to undergo weekly blood tests to ensure they continue to tolerate it. Like most drugs used in treating IBD, Mercaptopurine can be a case of trial and error; it takes some time to establish what dose each patient can bear without it becoming adverse to their recovery.
Medications, symptoms and side effects aside, suffering from a chronic illness can often feel like a full time job. It’s tiring enough in itself keeping track of ordering prescriptions, picking up medications, arranging blood and various other tests, seeing specialists, doctors and consultants and all the while trying to fit in having a ‘normal’ life around the whirlwind of your medical-schedule.
Despite the simple fact that Crohn’s Disease has turned my life upside down, it’s also shown me who I can rely on when times get tough. It’s made me see just how much I underestimated the love and support of my friends and family; something I’ll never do again. I’ve met some incredible people I’m now lucky to call friends who have shown me the strength and resilience a human can reveal even at their lowest ebb. I know when I’m at my worst I have people I can turn to for kindness and a friendly ear if nothing else. Something everyone needs, diseased or not. Being ‘aware’ of IBD isn’t just about learning what the gruesome side effects are, it’s also about reaching out a helping hand to another human being who might not necessarily look sick, but just might need it.