Becoming Complacent

In a recent conversation with a woman I am just getting to know I mentioned in passing that I had this transfusion thing next week and wouldn't be able to do anything on that day. She looked horrified, then deeply concerned as I explained what it was and how it worked. I realised that going into hospital every 8 weeks for a transfusion is not normal to most people.

This woman patted me on the hand by way of offering support? condolences? sympathy? and stated that needles were horrible and she couldn't imagine anything worse than having to have one stuck in your arm for a whole day every two months. Then she actually shuddered at the thought.

I see it a bit differently.

Not too long ago I was about as sick as I’ve ever been. I remember telephoning my specialist every day in tears, begging him to admit me (which he did after five days). The surgery I'd had a year earlier had made things worse instead of better. I was in more pain than I ever though possible and could not go more than 20 minutes without needing a toilet including having to get up 6 or 7 times a night. 

After two days of observation, the doctors were all in agreement. Medication wouldn’t work. There were too many ulcers, fissures and strictures and they were too widespread to operate. The only solution: Colostomy bag.

I cried for a week. I pleaded. Anything, absolutely anything but THAT. 

Eventually after three weeks in hospital on high doses of steroids, daily injections, humiliating and excruciating enemas, a couple of strictoplasty procedures and a whole lot of begging on my behalf, they decided to try Infliximab. They weren’t really convinced it would work since none of the other similar class drugs had worked. I guess they just took pity on the poor sad creature who was desperately clutching at straws.

“There’s every reason to believe this will work.” I must have uttered that phrase 60 times a day to everyone who would listen, oblivious to the doubtful looks and words of caution about getting my hopes up. It was too late for that, they were already way the hell up there, it was going to work. It just had to. And work it did. Infliximab seemed to work from the first transfusion. Sometimes I wonder if will power and pure determination is enough to make medications do their thing.

Fast forward to today and I am probably as close to remission as I'll ever get. There's been no talk of colostomy bags or surgery. So to me, these transfusions are far from something horrible or a reminder that I have an illness. Infliximab saved my life and I am very lucky to have these transfusions every 8 weeks.

Every time I have the transfusion I’m reminded of where I was and how far I’ve come. I’m reminded of how bad things have been and that they can easily be that bad again and I’m thankful that, in this moment, I’m healthy. It reminds me that I am alive and well and that things are good and I come away from it feeling revitalised. 

Colonoscopy

A colonoscopy is one of the most common procedures for diagnosing and evaluating Crohn's Disease. Anyone with any kind of intestinal disorder will be more than familiar with it. I for one insist on being knocked out for the procedure, but I know other people who like to be awake to watch the monitor as the camera snakes it's way through their large bowel. I know of others who've been given a DVD of the procedure, which I find both intriguing and weird.

So today I decided to see if I could find some footage of the colonoscopy. I know, I seriously need to get a hobby.

Explanation of a Colonoscopy


CSIRO Colonoscopy Simulation Rendering

This is obviously not real. I can pretty much guarantee my intestines aren't that pristine.

Actual Colonoscopy

This is what a healthy colon looks like.

There are plenty more but most of them are pretty disgusting, so I'll let you trawl through YouTube for colonoscopy's to your hearts content.

Explaining Crohn's Disease

NB: This is an article I wrote for Helium several years ago and thought it would be a good first post here. 

Explaining Crohn's Disease

Crohn's Disease, a type of Inflammatory Bowel Disease (IBD), is a disease of the gastrointestinal system that can affect any part of the digestive tract from the mouth to the anus, but most commonly occurs in the small intestine, terminal ileum and/or large intestine.

It was named after Burrill Bernard Crohn, an American gastroenterologist, who discovered the disease in 1932.

While it can affect people of any age, gender or ethnicity, onset is usually late teens to early adulthood. It affects men and women equally and is more common among people living in developed countries.

The exact cause of Crohn's disease is currently unknown. It is believed that the disease results when the immune system attacks the body, causing inflammation and other symptoms. Some believe that the disease may be caused by strains of mycobacterium, which has been found to be present in many people with Crohn's disease, but not present in those with Ulcerative Colitis (another form of IBD) however researchers are unable to confirm this as the cause.

Heredity is thought to play a role as approximately 1 in 5 people with Crohn's disease have a relative with the disease. More recently a gene called NOD2/CARD15 has been associated with Crohn's disease. Mutations in this gene have been linked to high rate of relapse post surgery and the early onset of symptoms.

The symptoms of Crohn's disease are wide and varied, depending on which area of the body is affected, however the most common symptoms include abdominal pain/cramping, diarrhea, blood in stools, ulcers, fissures, weight loss, loss of appetite, nausea, fatigue, fever and sometimes constipation.

There is currently no cure for Crohn's disease. Treatment is typically via medications that aim to induce the remission of symptoms. Corticosteroids are one of the most common and widely used drugs. They are effective in suppressing the inflammation in the intestine and other associated symptoms however they have a number of significant side effects. Sulfasalazine is an older drug, which was one of the first alternatives to corticosteroids, however it too has a number of side effects and is not suitable for people with an allergy or intolerance to sulfa. 5-ASA drugs have fewer side effects and are site specific, depending on where the active disease is located will depend on the type of 5-ASA. Immunomodulators aim to suppress the immune system, specifically the CD4 cells and are generally prescribed to steroid dependant people.

While diet does not cause Crohn's disease, some food and beverages can certainly aggravate the symptoms. It is generally thought that foods high in fat, fiber, caffeine or lactose can increase the occurrence of symptoms, particularly during a flare up. Many people find that a low-residue and/or gluten free diet are gentler on the body and tend to trigger flare-ups less.