WARNING CONTAINS CLOSE VIDEOS OF TOMAS
Sorry it’s been a while since my last post, I do appreciate my followers and readers. This one is a bit of a rant and slightly longer than usual.
If it’s not one thing, it seems to be another lately. I always seem to feel ill and I am getting totally fed up with it.
Yes my surgery saved my life and I am very grateful, but I know that I will never be free from the constraints of stoma life. Totally wearing whatever I want without worry of seeing the bag through the clothes. Eating whatever I want without worrying if I have chewed enough or eaten something that will block the stoma. Not having an off day when I know that I have eaten something that has caused nausea and very watery output and pain.
I have been waiting a year and a half for a definitive surgery to close the perineal sinus tract in my proctectomy wound. Why do we have to wait so long between appointments? why in any other situation would that be ok? I have a life on hold, I am trying to hold down a job, I am trying to plan things in my life that I can’t guarantee, holidays, special occasions. It is my son’s graduation this week and I feel unwell. I have been waiting for this day for three years with utter excitement and now I am worried that I won’t feel up to scratch.
Do I have to just concede that this is my life now? Is it enough to have major surgery that saves your life but also changes it? Why do I feel like this? do all ostomates feel like this? Is it normal for me to be a bit off colour in some form or other a lot of the time?
I STARTED TO WRITE THE ABOVE POST ABOUT A WEEK AGO but I didn’t have time to finish it because I became more unwell. I was very nauseous with a pain behind the stoma like trapped gas, that would come in waves and often wake me in the night . On changing my bag I notices that the stoma wasn’t moving at all which is not right. The only time it moved was when the trapped air that had built just above it, and got very uncomfortable and nauseating, released along with very watery poo. Then the stoma would contract a bit and go back to not moving at all. I was very concerned that this was not normal for me and I spoke to my GP and because of the nausea and pain behind stoma, he would refer me to the assessment unit at hospital.
I was struggling to drink enough because of the nausea so was very dehydrated and weak. Anything made me wretch and gag. They checked my blood pressure and took blood, then they took an x ray.
The wait was horrific. We got there at 11am and I was still waiting for the doctor to see me with the results at 6.30pm. All the while feeling ill and tired and sitting in a chair.
The doctor eventually came, almost discussed the findings in the waiting area with me and another patient present, then changed his mind and took me into a room.
” I think you have a partial obstruction and you need fluids so I am going to admit you” I was pleased something was being done and I was asked to sit back outside in the waiting area while they find me a bed on the ward next door. I would be given some intravenous fluids overnight then see how I am in the morning and whether the problem had resolved itself.
A nurse then came to check my observations again ” You need to drink more, you’re blood pressure is very low” I explained that I was trying but very nauseous so was struggling. ” Have you passed urine in the last 6 hours?” No I said.
An hour and a half later, my bed was ready. I was not given fluids until then ( after four painful attempts at putting a cannula in ) so I assumed they were not too worried.
I know they are busy with very poorly people, but I must say there were only a handful of patients all day, and I overheard a nurse say how quiet it was, what would the wait be like when full? There were invariably about four people of various uniforms behind the reception, chatting and eating. Throughout the day I tried to catch their eye to ask the progress, but never managed it. I ended up going to them. I do understand that it was the doctors I was waiting for and although the wait was horrific, that didn’t bother me as much as other things.
This wasn’t my best experience with the NHS and I am by no means saying I have not had great care in the past, because I have had amazing care by truly caring people, but I have also had shockingly bad care too. Why so different I wonder???
The doctor first examined me by sitting me on the bed and pulling my stoma bag half off. I yelped and said I usually use spray. At the same time my output was very watery and it went everywhere. He flapped about apologising, and mopped up a bit. ( It was on my trousers and pants at this point, nothing was going to get rid of it because it was like brown water ).
A very quick look and a ” It looks a nice pink colour” and it was done. I was left to sort myself out. I told him that my stoma which I have lived with for two years day in and day out, was not behaving in the usual manner. I wasn’t someone who had run to A&E every time my stoma had a wobble, but I knew this was different for me. My stoma wasn’t moving at all, I was very very nauseous and had pain behind the stoma, and I told him.
” It moves inside pushing the contents through that’s why, the movement is before it comes out the stoma” he answered. WHAT?
I could hardly say ” Excuse me but you are very wrong, a stoma will wriggle and move continuously with the rest of the bowel, I see mine all the time and it moves ALL the time” He was a doctor and I was not, so I let it go. It also wasn’t as moist as usual ( sorry, I know that is many folks worst word ever made 😉 )
On the ward I relaxed a bit and was grateful for a bed. I got chatting to a lovely lady opposite, and eventually she needed an NG tube. I hate them. She definitely hated them. I could hear her saying stop it hurts, I can’t do this etc, and they said have a drink of water. She was gagging and spluttering and it made me join in. I felt so sorry for her. They stopped after a while and left her without the NG tube. the four of us ( patients) agreed they should offer sedation, but they can’t. ( I still don’t understand why not, as I had it put in when asleep having surgery). They then kept reiterating to her that she had refused it and did she understand the consequences. Poor bugger she didn’t refuse it, she just couldn’t bear it.
I then had two student nurses either side of me saying how lazy other nurses were and they shouldn’t need to be told what to do, they should know their jobs blah blah blah, going on and on. Not great to hear, but one of them apologised for talking about it over me afterwards.
But again had two other wonderful nurses who listened and cared, and I thank them for that. They spent time with me and other patients, and were kind.
I was allowed home the next afternoon, still not with a 100% diagnosis, but felt a bit better. The consultant in the morning ( upper gastro and liver )was very abrupt and didn’t hang around long enough to ask much. Stoma still not active apart from air forcing poo out but I could eat and the fluids had helped a lot. I will try and manage at home if it gets worse or happens again, as I am not confident unless I see a colorectal or stoma doctor. Obviously if I have absolutely no output, and vomiting profusely, I will.
Sorry for the moan, I have a bee in my bonnet at the moment. ( BTW I made it to son’s graduation although didn’t feel well enough to celebrate afterwards watching England, perhaps for the best as it happens )
One proud mummy ( he got a first : ) )