Perianal Fistulising Crohn's Disease - Bums, Setons and Taboo's

If you have inflammatory bowel disease or irritable bowel disease or in fact any condition that affects the bowel, you'll know the taboo that exists about toilet matters! The screwed up face of the listener as you answer the question 'How are you?' with a smidgeon of information about the constant toilet trips or the liquid running out of you, the flush of red facedness because you had to use a public toilet or a friends bathroom and well, the smell permeates the whole floor space. For a bodily function that we all experience, there seems no end to the shame and embarrassment associated with toilet matters. 

Now, add in fistula's and anal fistula's and wooooo...hold your words, Madam! The dust that rises in the wake of the speeding off person, who was a second earlier eager to engage and asked; 'How are you?' is all too often the nice response should you mention fistulas, anal canal/passage, rectal pain, infection discharge or some such symptom. You might also get an audible gulp of disgust or they may even wretch as you signal you have had another surgery for a rectal abscess or septic infection. It is excruciating to be greeted in such a way and to observe others behave in such an instinctively, childish way to another person's pain and suffering because you mentioned bottoms or anus, yet, it is all too often the expected response from the general public, family and friends. 

It happened so frequently for me and that was with friends, that I developed a little gesture to signal "Sore Bottom Area" with a hand gesture, waving around the bottom in a circular motion and a pursed lipped, pained look upon my face as to denote, "it's too painful to explain" kind of air! It worked for those friends that still visit me at home for they began to understand that even though it may have made them feel uncomfortable, it was and is unbelievably painful to live with. It affected my whole life - the act of sitting down became a minefield of explosive pain and my inability to sit anywhere comfortably, makes it impossible to go anywhere. 

When asked; 'How are you?', I often lie! It's just easier to say the expected, "Fine" and this seems so absurd as most of my interactions with others are in a medical setting. The lack of reality in my life is disturbing to be fair but I recognize that it is for others that I lie. I personally have no issue with discussing my condition with anyone. I am desensitized by the conversations with my surgeons, doctors, nurses, GP, and so on that, I can happily talk about PeriAnal FCD as if I was chatting about the school run. There is something about the level of pain and the dramatic impact it has had on my life that lessens the effect of these taboo topics, words, and bodily parts to nothing more than just that; bodily parts and functions.

I enjoy and get some sadistic element of fun out of watching new people squirm if they should be just a little judgy about why I'm not working or suggest I don't look ill, as I divulge, in detail, the range of symptoms and effects FCD has had upon me. Admittedly, I can only do this for a minute or two before the experience triggers the sadness and sense of grief of the loss of a life I had prior to this diagnosis - I long for the days when I suffered from thunderous stomach pain, at least that was acceptable and hadn't stopped me from working! But still, we find our fun where we can get it and I do enjoy mt verboseness, it is the skill I have that has been enhanced by my experience as I try to express the horror, anguish, and agony of living with a disease that no one wants to hear about or talk about.

In fact, it wasn't until I joined an online Facebook support group, that I realized that the majority of fistulas actually occur in new moms! And, men are more susceptible to them and they can occur for no reason whatsoever. Gosh, I suddenly found myself grateful for knowing what was driving my fistulas and really, very grateful that I wasn't a new mum trying to deal with a family whilst trying to keep my health from overwhelming me - because fistulas demand your minds attention, your whole energies and all the resolve you can muster to manage the pain and take care of your basic needs. 

When I find myself challenged by Crohn's Disease and I often find myself knee-deep in an issue I couldn't have imagined, I take away my innate ability to adapt, cope, and readjust. Of course, it causes mental health and emotional health issues, it is horrendous. So much more harrowing than anyone can imagine and it affects me, my whole self! It has taken me to the depths of despair and sorrow and at times, felt it left me there through no fault of my own, either! It is heart-wrenching and if you expect me to hide the horrors of living with this condition, then it is you who has a limit and thankfully, very blessed existence, to know no suffering but life with Crohn's Disease isn't so easy. It is a challenge and we, those of us affected by it, rise to the challenge in ways that are amazing and of course, at times, seems deeply disturbed and morbid but for a lot of us, I reckon that is our way of making humor out of a situation that no one really wants to talk about or empathize with.