I am in my hospital room, for the 3rd time since 1st Jan 2010, battling with an obstruction at my terminal ileum, where small meets large intestine, and finally I am getting around to my blog. My life has been interrupted by incidents outside my control. So much has happened, and I am now a mere day away from my first surgery as a Crohn's patient. Wow!
What a momentous event it will be for me... I am joining the hallowed ranks of many, many brave patients with Crohn's who have had to face eventual surgery, especially those with intestinal strictures or narrowing, like myself. I am strangely encouraged by the fact that many others have gone through the same procedure, not that I rejoice in their sufferings, but I find comfort in them. If they too have held their heads high and survived, so can I!
Fortunately my disease is localized to the terminal ileum, and so its removal may be the start of remission for me, barring recurrence of the disease, chances of which are about 20-30 percent. I live in hope, and will be on strong immune-suppressive meds post op to stave off recurrence. Here's to a happy removal of ileum, and also my gall bladder which has developed stones that will cause trouble down the road! Fare thee well, ye two pieces of no gooders! haha! Out with thee!
But how did I come to be here, parked in a bed in a room, waiting for surgery? I reflect on the events of last year, and I know my spiral into ill health began with my father's illness in late August. He was in a coma for a month and I traveled up and down to KL to be by his bedside, neglected my own health in the process, and went through severe emotional turmoil. My father was dying, and as a child of divorce, and having never been close to him, I had so much hurt to deal with, and it all surfaced during this time. I grieved for the father I wished I'd had, and mourned the passing of the one I did have... and being a sensitive person, my mind and gut connection always so sharply attuned, my health began to crumble. And yet I knew in my heart that this was a rite of passage I had to endure. It was time for me to bear the loss of a parent and fulfill my duties as child, but most importantly, the time had come for the healing of my soul. I became whole again inside, as my body, my outer shell, fell apart.
After my father passed away I went off on a holiday in October with my own family to Langkawi, but I caught a bug and was ill... and it took a long time to recover. I suspect I never fully did, and this has always been a problem I have had being very sensitive to infections. November was non eventful, but exhaustion set in, and my meals were very small portions, and I was full very quickly and sometimes had nausea, but not much vomiting.
In December we tried to go to Manado for a holiday, but bad weather hijacked our plans while a family of Indonesians practically “hijacked” our plane (a long story!) and refused to let the plane leave... and spending 12 hours trapped in a flight to nowhere was too stressful for me. I began throwing up with severe pain through a large part of December. Christmas was such a non event, I spent it on a sofa. I stopped eating normally, and when even porridge would not pass through my system, I then knew that I was very ill, and went to see my doctor. (perhaps I should have seen him sooner!)
A CT scan showed gall bladder stones, the Crohn's was flaring up with the stricture inflamed and I also had gastric pain. I was admitted on Jan 1st to try and reduce inflammation. Not a very Happy New Year for me J. No food was allowed, only liquids, like Resource, and even then at half strength because full doses made me throw up. Whatever went in just came up, undigested, and I dreaded even drinking because it brought pain. This, then, is life during a flare up for Crohn’s patients. We fear to eat because of pain, and then weight loss begins, unsurprisingly, with all the vomiting too, bringing further exhaustion, and malnutrition.
Steroids are the standard issue for these episodes, and so I was started on medium doses, which then had to be increased, causing bloating, a swollen face, and mood swings, but they do wonders too. Fortunately, my meds did kick in and help reduce inflammation and pain. The inflammation subsided, but the scar tissue around the terminal ileum, a result of over 12 years of disease and continued cycles of inflammation and scarring… that scar tissue is irreversible. Nothing can remove it, and it has now come to a point where it is so scarred that the terminal ileum must come out. Surgery was suggested, but I viewed it as the final option. I decided to try and starve longer to see if things could get better. A fear of surgery and recurrence of disease and post op pain immobilized me and I was mentally unprepared for the idea of surgery. Having had a less painful obstructive episode 5 years ago and starved for 8 weeks, I was sure I could do it all again, and escape surgery. I really wanted to give it a go! (feel a bit silly about it now in retrospect, but it’s a moot point!)
I was discharged briefly then readmitted when vomiting returned, and finally readmitted for the 3rd time after a routine blood test found dangerously low levels of potassium. Direct admission... and all I had was a handbag on me. Oh my! My heart could stop any time, apparently. Well, we couldn’t have that could we?! And so began my next admission and this eventual journey towards surgery which then depended heavily on my potassium levels being brought up to par.
Potassium is so important, and yet not all that easy for someone to get into their system, especially if you can't eat. Drips were set up, and the pain was searing and unbearable, and they reduced the concentration of potassium but that meant it just took longer to get it in. Finally they tried potassium syrup, which ran right through me and set off 15 diarrhoeas in 12 hours, and all the potassium I had managed to get in went right out again! Despair set into me… and then I was given a fantastic option of having a central line set into a vein and a catheter threaded through to a major vein above my heart. Into this vein potassium was painlessly pumped, along with nutrients in a predigested form, and all my medications. My first Total Parenteral Nutrition session! I found it exciting, and the best part was I had no more pain.
The joy of not having pain is indescribable when you have lived with it for weeks. The vomiting I had was in reaction to food backing up and the pain it caused was so severe it had felt like a knife cutting through me, and heat and pain searing me, and only vomiting brought relief. Having a central line in meant that my entire digestive system could shut down and completely rest, and hence there is no pain. Even the central line hardly hurts. It was miraculous for me! So simple, and yet so meaningful, when your every nerve has been on fire in pain for weeks.
My potassium level is up enough now for surgery, and I am just being beefed up and strengthened for surgery. I feel like Gretel in Hansel and Gretel… being beefed up for the cooking pot J haha! Actually I am psyched, I am ready for surgery now. It’s been 42 days without food (discounting watery porridge on a few occasions to test drive the system, and one lousy banana that failed miserably to make it past my terminal ileum!) I am hungry and exhausted, and frankly if they offered me a lobotomy in exchange for food, I might just say yes! (not really!)
And so my life, now interrupted, is on the brink of being back on track. I am at peace. I have been sustained through all this by my loving family and friends whose support has been invaluable. I have the best doctor I could possibly have, a good surgeon waiting to help me, and fantastic nurses to see to my every need. I am so blessed. My children miss me and I am desperate to be home with them, but I know I must pass through this valley first.
It is a valley. I smile, I laugh, I joke a lot, but it is a valley of suffering and many times I have broken down and wept tears of sorrow and self pity and grief, but never for long... I have suffered and I will not deny the truth to myself. But I do not feel bitter. I refuse to allow this disease and all it has entailed to make me bitter. I have found so much hope in my heart despite setbacks, I have found so much love and friendship and sincere care in the hearts of my family, extended family, friends both old and new, and my FB friends have kept me going through all this.
I am reassured of the love of mankind despite the differences of creed, colour, religion, nationality etc… all that seeks to set us apart when in effect, we are all the same. All of us suffer in our own valleys, and this commonality of suffering unites us. I am part of you, and you are part of me. When you suffer, I too suffer. When you are well, I rejoice with you. I thank God for every remembrance of my every friend who has upheld me and continues to uphold me through all of this. You will never know just how much it has meant to me. I love you!
Thanks for reading, and here’s to a great outcome for surgery! Oooooh! I wonder if morphine will give me hallucinations… and who will I see?! J
Pav
