No Colon … barely rollin’

No Colon … barely rollin’

I have tried to write my STOMAVERSARY blog for over a month, and with great frustration and a full page written, my rotten laptop decided to shut down and I lost a fairly good draft, so I am typing fast and with a little bit of rage I must admit! But sit down, relax and enter my world for a little bit.  Like many of my “controversial blogs” I must start with a few disclaimers.

1)      You may be offended by the content – it is not personal, I am not speaking of a specific person, establishment, Dr (well, perhaps I will), or experience.

2)      I will no doubt swear, if this bothers you, it is best that you shut down the page and read no further. 

3)      This is my truth; I write because I think it will be both therapeutic for me and perhaps fill you in on the true struggles of a patient who has had one hell of a shitty year.  If it helps you understand my story or provide insight to perhaps a loved ones struggle it was worth writing.

Stomaversary is a term I was introduced to by my online support group members.  On the anniversary of their surgeries they proudly share the news, how many years, and good lord … even pictures (and not of their faces, usually their stomas that they have named Rosebud or Jack or Bob).  I am not there, I will most likely never be there, and my stoma has no name, well, I do call it a few things, but most often it starts with pretty strong profanity.  You see, January 12^th was not a happy day, it is not a date I celebrated with a cake or poop emoji balloons, rather, on January 12^th I died. I was reborn, but in to a body and life that I was ill prepared for and one that I truly despise.  I don’t know if you can really go through a traumatic event and not be changed. On January 12^th I entered the operating room terrified, worried, and convinced I was not going to see the world or people again.  I was marked by the stoma nurse in two places, great big X’s marked the possible locations of my stoma, it was covered with medical clear tape and I wrote a message to the surgeon on that tape – “Please Don’t Kill Me”.  Of course, in Gail style I felt bad and was a tad ashamed I was telling a well respected and highly regarded transplant surgeon to not kill me, so I wrote in black marker “Good Luck” on the other potential site.  I wanted to live, I didn’t want my 6 year old daughter to not have a mother, I had been assured the surgery was a must and it would be a new life for me, a great life free of pain and daily crohns symptoms, it was also my ticket to my future liver transplant.  I would be able to return to work and eat food; I would be able to travel and not have to look for the washrooms as I entered every building.  While terrified and sceptical, I did love the thought of eating salad again and going to the beach to search for sea glass without the worry of finding a bathroom.  I didn’t go to the OR with ease though, I fought like a 6 year old about to get her flu shot (I say from experience, they can put up quite a fight).  I pleaded and begged, but I lost the battle.  I have always been a worrier and a planner, planning to die and worrying about death is not something you just snap out of or get over.  It was real to me, very real and thinking about how scared and terrified I am makes me physically ill to this day.  Despite all my planning, and I really thought I was prepared, a year later I can’t believe how little I knew about the life I was going to lead.  I had prepared with knowledge. I joined support groups, I asked questions and thankfully found the most supportive people who were there, and still are, 24/7.  They gave me tips and suggestions on everything from products, to clothes, to what to expect from unhelpful or helpful nurses, they, along with my months of research, armed me with a knowledge that was worthy of a medical degree.  I was prepared - I carried my medical chart with pride, had been told numerous times I was the most organized patient and knowledgeable patient they had encountered – of course I carry my chart as I don’t trust the Dr’s to have read my charts, so I ensure I can provide copies when they prove to me they know nothing about my situation – sadly this continues to happen.  I would rhyme off every blood test result, CT scan report, MRI finding, biopsy counts and results.  Of course, a well versed and articulate patient is also many Dr’s worse fear. I knew too much, no doubt asked too many questions and questioned everything I was told.  My trust was gone of the medical profession, after so many failed treatments, mess ups, near death experiences (okay, only 2, but I remind them every time how they almost killed me), I was worried, but did think I was prepared.  Alas, nothing could have prepared me for the year I have experienced.  No one shared how lonely it would be, how my faith in people would shatter, how my friends would disappear, how out of sight and out of mind was never more true, and I certainly was not prepared for the emotional and mental demons that entered my world and took hold.  I was not prepared for my confidence to be destroyed and my body to look like it was chopped up with a chainsaw.  I was not prepared for the insomnia and fear and anxiety that have controlled my life and for the disappointment I feel in both people and myself.  I swear more, I eat less.  My life has become a strategic calendar – when I eat, when I book appointments, when I leave my house, what clothes I wear, where I go, when I drink and how much, what bathrooms I can and can’t use, what type of food I digest and medications I take.  It is exhausting, but it was how I coped. And no one can possible understand and over the past year, I have realized most don’t care to anyway.   And do you know one of the most difficult things – I look okay.  I can put on my make up and do my hair, I even put on weight (too much I must add but I don’t look anorexic anymore) but I also don’t look like your stereotypical sick person.  Like the life I have lead for the past 12 years, hidden illnesses I consider some of the hardest, you look fine on the outside, but your body, mind, spirit is suffering on the inside.    When asked how I am I say fine or good … but nothing could be further than the truth. I do have some good days, I am not spending my days crying or on medical sites like I once did, and I do try to get out of the house more, giving up my true recluse of a life I was starting to lead, but it is hard, very, very hard. 

In case someone is reading this and new to the ostomy world, I will give post surgery life a few positives – if nothing else just so you don’t all think I am all doom and gloom.  I am thankfully not in physical pain from surgery, the initial recovery was so very tough, having to be helped in and out of bed, to reach for a glass in the cupboard or to the put the dogs leash is no longer an issue.  I have physically healed.  While I had a horrific time for the first six months trying to find products that did not burn my skin and cause what I actually thought may be equivalent to flesh eating disease has cleared up. And for the first time in 12 years, just the past few weeks I have tried salad again – and did not die, end up in the hospital or have a blockage – of course, it has just been lettuce and croutons, but a start – lettuce has been the devil for 12 years, it was a big step to try it again! 

However, at this time, the negatives are still greatly outweighing the positives.  No need to list them all, my arthritic fingers can’t type that much, but I really hate the bag.  I hate how it looks, how it makes me feel, how my clothes look, how it makes noise (oh yes, it makes a lot of noise – mortifying loud obnoxious noise), how unpredictable it is, how the potential for leaks has made me a prisoner, how it has affected my life, friendships, family, even my finances.  It was pointed out, and quite accurately I must say, that I blame my ostomy on so many things in my life.  I don’t know if I realized to the extent I was doing it but it is very true.  Even my purse is heavier because of my ostomy – my supplies, water bottle, emergency clothes are heavy – you guessed it, the ostomy’s fault!

I am a smart person, I have common sense, I have empathy and sympathy and I have always thought of others.  I was always the first to be there, if it was in person, with food or a gift or a note.  But I can’t get over how my life spiralled in a direction of fear, anxiety, hate, hurt, loneliness… I do have amazing Dr’s (for the most part) and a team that spans PEI, NS and NB, and I honestly don’t know if I would have survived the past 12 months without the support of complete strangers online.  No one judges, there is always someone who understands, at any time of day or night I can get a response and some of the people, while virtual beings, have become great confidants and friends.  It is the one place I feel I can share my true feelings and have someone understand.  People genuinely seem to care, and are concerned.  Then I enter back to my reality in the “real world”.  A lonely reality, that includes very few people to talk to, the messages that once were plentiful when I was near death are long gone, and the visits few and far between.  My social life, like most parents no doubt, is Greta’s very active social life, which I am very grateful for, it is the thing that gets me out of the house the most – well, that and the pharmacy!

And low and behold, I still have stage IV cirrhosis to deal with, but it has certainly taken a back seat to accepting and adapting to life as an ostomate.  I don’t know what the next 12 months will bring, not sure what I even want to occur, I have zero expectations of people and activities, but I will keep on rollin’ despite no colon!  So, stomaversary will just be a term I write in this blog, there will be no wild party, but like I have for the past year, I will reflect on how much I have changed this past year, both good and bad, how some friends entered and others exited, how my priorities and ability to give a shit has significantly changed and how I will face the challenges ahead the best I can, even if it is at turtle speed and strategically planned!  

Toodles.

We grew up driving in storms but have to say not quite as brace (or stupid) as I once was!