Bowel disease is in our family. I might be the only one with Crohn’s, but I am sad to say that bowel disease is well and truely in our family tree.
This week has been the hardest week i my life to date – and to put it in perspective, the entirity of 2010 was full of hard weeks for us.
I got a call at 11:37pm on Monday night after an afternoon of battling the migraines that come with starting a course of Entocort. My brothers name flashed up on the display of my iPhone. I pretended to ignore it. Something made me check the voicemail he left – I suppose I was driven to because I had strong doubts he would subject himself with the wrath of Amanda for something trivial. The call was anything but trivial. I knew instantly it was Mum. I had had a feeling something was going on with her a few weeks before when we had a drop down argument about pain relief. I called back. Mum had been rushed to hospital with Gastro Intestinal Bleeding – her blood loss was severe.
Monday was a sleepless night.
I elected not to go to work on Tuesday – I needed to get the full story from the hospital. I didn’t believe the panicked words of my father and I needed to calm the rest of my frayed family. Digestive disorders are nothing new to me – but I very much frown on being considered an “expert”. I read a lot and I went through the 7 circles of hell as they tried to find the disease which had been haunting me for years. I suppose my knowledge did come in handy – I could tell the family instantly what it wasn’t. It wasn’t Cancer. I don’t know why everyone thinks that’s the worst case scenario even today – they can fix Cancer. Anyway, having to learn my families entire medical history so I could answer question after question from one specialist after another, I knew my mother had Diverticulitis. Many people do, its a common bowel disorder. I also know the outcomes as I was praying on the table before my scope thats what I had too. No such luck. The most likely cause of the bleed was a Diverticuli being knocked off a blood vessel. That prognosis was confirmed when we got to the hospital to see what had happened. What I didn’t expect to hear was that it was exacerbated by mum chugging aspirin for her arthritis pain. Aspirin is a blood thinner – when the bleed occurred it was much worse because she couldn’t clot. That particular medication is right at the top of no-nos when you have bowel disease – and she knew that. Who am I to criticize though – I have days of intense pain when I take much more than the recommended dose of Panadol and Doloxene. Its just what you have to do to function – to get to work, to get home, to run your household. Dad didn’t know she’d been taking it – I suspected and thats what our fight was about. Trying to get her to go to the doctor to get some proper pain medication.
She was pale and a little off with the fairies, blood loss does that to you though. I am not sure she remembers seeing us that day – I certainly remember seeing her.
I calmed dad down outside and reiterated what the staff had said – its fixable – it will most likely fix itself. His attitude changed, I had got through to him – so I went about the business of correctly communicating the situation to the remainder of the family.
I went to work the next day thinking that everything was going to be flowers. When does that happen to me? I should have known better. I should have known that when my mother does something she certainly doesn’t do it by halves.
The bleeds continued and her condition worsened. On Friday, after misinformation from my father, I had my eldest sister fly down from Cairns. Surgery is a real probable outcome, and while I know the surgery they will be doing well (its my surgery – a bowel resection) I also know that sedation in an elderly, overweight person is very dangerous – the most dangerous part of the whole process.
This whole episode has gone to prove what an enemy misinformation is. That there needs to be a single, reasonable voice communicating the events – or things get blown out of proportion and the person laying in the bed gets worse through stress and worry.
Mum stabilized today for the first time since Monday. She hasn’t had a transfusion for 36 hours now and will be having a Scope tomorrow (not a Colonostomy as my father kept calling it > he has been telling everyone all day that she is having her entire bowel out tomorrow….). The pure fact they are scoping her means she is healing. A scope requires twilight sedation – they wouldn’t even try that much on a grossly unwell person. My family is still panicking though… I think it hasn’t sunk in that I have “been there done that” with most of this stuff. The doctor even tried to explain that I had a worse prognosis than my mother when I was standing as a visitor and she was the patient. But – they would rather worry about her than be realistic about the situation – so who am I to argue? I know I need to keep my distance though – because the fear mongering will drive me round the twist if I am confronted with it for too many hours in the day.
I suppose this characterises me as uncaring? That is not true. I have had my private little breakdown, but I could only have it for an hour. I needed to go back to being the strong bitch so I can support everyone else around me. I love my mother very much. So much. And it tears me up seeing her laying there, white, attached to everything with lights and whistles that the Bowel and Bag unit has. But if one of us isn’t in control and realistic, then what happens? A mess. That’s what happens.
I am less worried now they are performing the scope – because I know that means she isn’t in any danger for the moment. When it comes to surgery though… that still unsettles me. Its true I know the procedure. I also know that they will fight not to have it done – which is a very big mistake. They will fight it because it requires a temporary bypass – for 10 – 12 weeks… and they are losing their water over that. In 12 weeks she would go back to having a normal life for the rest of her long days. If she doesn’t have it – she will always be wondering when its going to happen again….
I say that…. because I know from experience. Just…. a different experience.