I’ve recently returned home from 7 (long!) days in the hospital, having been admitted to A&E in absolute agony. I can honestly say it is a pleasure to be back to home comforts, even though I haven’t returned as a picture of health.

It started in the early hours of a Tuesday morning. I couldn’t sleep and haven’t been sleeping well for some time. I found myself feeling quite uncomfortable, and suddenly it went from discomfort to pain. Waves of cramps and then waves of sheer agony. It went on for a few hours with me hoping it may pass; I tried some of the usual things, like bringing my knees up to my chest, trying to walk around, hot water bottle etc but this felt different. It felt wrong. Intense. As soon as it was a more reasonable hour I had my parents, a little panic-stricken when they saw the sight of me, rush me to A&E. I wasn’t kept waiting for long as I could barely stand up or sit down, and I apparently I was mumbling to myself to try to keep from crying or screaming with the pain. I went straight to a ‘Major’ room where I was given morphine (a wonderful thing for pain but it definitely does something ‘funny’ to me!) and set up for an X-Ray.

A&E Bed copy

From there I went to an emergency bay that specialises in gastrointestinal and gynaecological issues, where I was seen by different nurses, consultants and surgeons. Some of this was blessedly hazy in my drug-induced state. I was put on a drip for IV fluids as I was throwing up and given more pain medication.

Possibly the worst experience whilst in the ward was the dreaded NG tube. I had the tube-up-the-schnoz attempted once before with no luck and a lot of distress on my part, so this time around I was shaking my head and saying no with passion. When I was told it was basically the tube or likely get worse and face surgery, the tube made its way up there. It was not a pleasant time, but it was helped somewhat by a considerate nurse who made it slightly more tolerable. I was still a snotty, pained, and distressed mess by the end of it though, and hated every minute the tube was scratching the back of my throat. Still, it did a job and sucked out ick from my stomach. Lovely jubbly!

NGTube copy

After a few days the pain was easing off and the worst of the waves of crippling pain were gone. I was left with incredible discomfort and a belly that looked ready to pop triplets. I felt exhausted, upset and very disheartened.

Each morning the consultant surgeons and various doctors make their rounds, with about 12 of them cramming in to a 3’x3’ space at the foot of my bed to stare at me in my attractive blue gown and dishevelled hair, tubes sticking out everywhere, to ask how things were going. I’d been measuring stoma output and every wee I took, which was a great effort as I wee more often than I curse (a lot). The signs were, after about 5 days, slightly positive; output consistency had changed and the waves of pain were pretty much gone, so they thought things were going in the right direction. They emphasised the want for ‘conservative management’ as otherwise surgery to remove the adhesions would be necessary. I later learned that they thought all along this would be the case, but they were holding out hope it wouldn’t come to that as surgery to remove adhesions can result in more of the damn things.

On to day 6 and I’m still on fluid only, no food. Not that I’m hungry or feel my tum has the room for even a breath of air let alone a biscuit. But my mouth and brain have the munchies, and I’ve been lying there thinking of all the things I’d like (Shepherd’s Pie topped the list a few times). I then got down about thinking of all the foods I’m weary of eating with an ileostomy now, then remembered that I’m in A&E for problems I couldn’t have anticipated nor have had any influence over anyway. It all feels like pot luck as to what happens, whether you get lucky or run in to problems with your stoma.

I then get the NG tube out. ThBlanketse drip is stopped. I’m asked to eat a ‘light diet’, which consisted of a yoghurt and crisps for me, eaten in sheer fear. Thankfully, they didn’t seem to cause any problems. I’d been up to have a shower, waddling around in my puffed out condition, and noticing the extreme water retention I seemed to have developed. Cankles. No hand bones visible. I tried on the ring I’d put in my purse that usually slips off easily and couldn’t get it over the knuckle of the slimmest finger. My elbow bone had disappeared under puffy flesh. I realised when I got home that the several IV bags each day were to blame!

The ward was more open than I was perhaps used to, with curtains very rarely drawn. FingerMonitor copyI met 3 wonderful women in particular, and we shared the goodies we had between us (I was the charity case who seemed very unprepared, so one lovely lady gave me magazines, face wipes and energy drinks, and I passed these on after she had left and I was discharged to the next lady in need). I think that this bit of contact for those days, to give and receive support equally, was comforting and helped all of us.

I was discharged after a week with trepidation. The consultant surgeon said to keep going as I had in hospital and hopefully things would resolve of their own accord. He couldn’t give me any idea of how long it would take, but he was happy enough to have me leave. I was happy enough to get out of the ward and get some peace and quiet, but I was also terrified of getting worse again and having to repeat this whole experience in a few day’s time! The problem was, I lacked a lot of confidence in what was being said.

From the time I was admitted, there was a lot of guess work going on, no real answers or degree of certainty warranting any confidence. There were things said that seemed ludicrous and made me wonder whether anyone knew what they heck they were talking about. One surgeon told me that no foods could cause a blockage for an ileostomy patient and asked me where I’d ‘read such a thing’! I kept mentioning my distended stomach; the surgeon said it’s swollen and will go down in time, the stoma nurse said it’s blocked up. I mentioned the scarily huge stoma; the surgeon says it’s swollen and will go down, the stoma nurse says it has prolapsed. I had no additional medical or physical intervention, but I’m aware that others in different hospitals have. It seems it’s both a matter of guess work, and a matter of who you see as to what they tell you because ideas, treatments and ’facts’ vary so drastically from place to place and between specialists even within the same hospital!

Back at home now and it’s tough going. I feel grateful to be out of the woods, so to speak, and hopefully ‘on the mend’. I’m worried about eating but I’ve been able to give my body some nutrition, some movement, and some rest, even though sleep has still been more than a little elusive. I’m trying to hold on to the thoughts and perspective I had when I was staring at the ceiling and doing a lot of nothing in the hospital, whilst knowing that the usual routines and stresses can creep back in and drag you down very quickly.

I also realised I was annoyed and angry because I thought this ileostomy could give me my life back, and yet it was posing the risk of stopping me from living because I felt as though at any moment my body could go in to meltdown again. I’m learning to work around this line of thinking… I might have similar problems again, I might not. I might win the lottery, or get killed by an angry seagull. I might not.

Seagull

I realised a lot of the things I was so worried about, so worked up over and stressed about were not that important, that I could make the tough decisions I was scared to make. I knew exactly what mattered the most to me, where my priorities lay, what I wanted to do when I got home. Who I wanted to be. I want to be healthy and happy. I want to be grateful, more at peace with myself and my situation, more positive. I want to draw a line underneath some of the past and start writing a new page and give myself as close to a fresh start as possible. Because as scary a prospect as that may be, it’s also what may be the best thing for us some times.

This past week and a bit has been terrible. Utterly horrible, an experience I don’t want to have to repeat. But it has also given me some perspective and I hope to make the most of that. Before I get eaten by those angry seagulls.

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