I don’t know what to say...I feel completely and utterly broken.
I was full of hope that on this mornings ward round the consultant would come armed with a plan.
There is no plan.
I think I’m destined to be here forever.
The bowel obstruction isn’t life threatening so the surgeons won’t operate. The gastro consultant said there’s nothing he can do to help. I’m trapped in this hospital bed by a body that doesn’t work and an NHS that’s overwhelmed. I’m trying to find the light at the end of the tunnel but at the moment it’s pitch fucking black.
Well, that was 10 days ago and I’ve not had the energy to blog since. This bowel obstruction has completely floored me and I’ve been in so much pain. When I wrote the beginning of this post I had been obstructed for over a week and was hoping that the doctors would have a plan to sort things out, but I felt completely let down. When I told Hubby he was livid that the consultant had told me that “this is just the way things are and you need to accept it”. He said he was coming in the next morning to sort things out but I didn’t think it would help things if he came in all fired up so I asked the ward sister to call him. She thought it would be better for Hubby to attend the ward round on Thursday morning and speak to the doctors himself (plus I think she thought she’d bodyswerve it and let the doctors deal with it!)
Having a bowel obstruction isn’t simply not going to the loo like when you get constipated; it’s much more serious and can be life threatening. There can be lots of different causes of obstruction such as a narrowing of the bowel, inflammation or part of the bowel twisting but unfortunately they don’t know what’s causing mine. As usual I’m some kind of medical mystery!
I made it through the weekend without needing to have emergency surgery but then last Tuesday the surgeons came to review me again. My abdomen was very swollen and distended and I looked like I was 9 months pregnant. Because of that and the length of time I had been obstructed the surgeons felt I needed to have an X-ray of my abdomen with contrast to see if it would show a specific area of my bowel that was causing the blockage. The contrast liquid, called gastrographin, tastes of aniseed and almost burns as you drink it. It’s bloody awful but it’s also known to stimulate the bowel and act as a super strength laxative. After drinking it the X-ray has to take place 6 hours later and I was accidentally given it Tuesday evening instead of Wednesday morning. The ward was really short staffed and if you’re attached to pump with medication or feed going through it then you need to have a nurse escort if you leave the ward for tests. I was given the gastrographin at 7.30pm meaning that the X-ray needed to happen at 1.30am. Usually overnight there are 4 nurses on the ward and 2 healthcare assistants (HCA’s) but that night (and most nights last week) there were only 3 nurses on and no HCA’s and one of them coming down to X-ray with me would leave the ward chronically understaffed. Luckily they were able to get a nurse from another ward to accompany me but all over the hospital the wards are short staffed and staff are constantly moved from ward to ward to keep staffing at a safe level. Part of this is down to the ‘pingdemic’ and staff having to isolate or look after children that have been sent home from school, some of it is down to sickness, annual leave but it’s also a result of the many vacancies that exist. I’ve never known it so bad and the nurses are fed up and exhausted and the 3% pay announcement has only made things worse. I know some of the nurses think they’d be better off sat on a till at Tesco instead of working 12.5 hour days with awful shift patterns and the responsibilities that come with their job and as a result a lot of them are cancelling their overtime shifts. Hospital staff wanting to work extra shifts do so through what’s called NHS professionals (or NHS P for short). One of the nurses was telling me that when they work for NHS P they actually earn less per hour than their regular salary- hardly an incentive to pick up extra shifts especially when they know that nurses from outside agencies earn considerably more than them.
Anyway I digress. I had the X-ray and a few hours later there was some movement 💩 and this helped to ease the pain and the pressure because my abdomen was so swollen it felt like it was going to explode. I was hopeful that this meant that my bowel had ‘woken up’ and was going to start doing what it should be doing but then from Wednesday morning things had ground to a halt again.
Hubby came into the hospital last Thursday morning for the ward round. It was the first time he had met Dr B, the gastro consultant and because of the heat he wasn’t wearing his bowtie. Later in the day one of the deputy sisters told me that he actually had his bowtie in his pocket in case a situation arose that called for him to put it on. I’m not sure what situation he would deem it necessary to put the bowtie on but it certainly wasn’t for meeting Hubby which made me laugh! Hubby got the opportunity to ask all the questions he had and find out what the plan is for me going forward. Dr B shared his frustration with us that the surgeons don’t currently have any theatre time and that he’s been petitioning them weekly to operate on me for 9 months now. He has no sway over how theatre time is allocated and can only relay to the surgical team how unwell I am and how frequently the obstructions are happening. My big worry is that only one surgeon is willing to operate on me so that tells me that the others either aren’t confident given my issues or don’t feel that they have the experience or expertise but in an emergency situation one of these surgeons could be on-call and have to operate on me. Each time my bowel obstructs it’s worse than the time before and I’m terrified that one of these times my bowel will perforate. If I don’t get the right surgeon I could end up being left in a right mess which is another argument for doing the surgery sooner rather than later. At the moment it’s looking like it could be October or November but there’s no guarantee and if things get worse with Covid it could even end up being next year.
My bowels remained ‘asleep’ until Sunday evening and then things slowly began moving. It would appear that the obstruction is slowly resolving but it’s all a bit stop and start. The abdominal X-ray didn’t show anything specific or give us any more clues as to why this keeps happening which is really frustrating. In just over two weeks time I’m supposed to be going on holiday to Cornwall and so all my focus is on getting well and discharged in time for this. All the doctors and nurses agree on how important it is that I make this holiday; after 4 months in hospital I desperately need some time with my family. But I must admit that I am worried about travelling so far away from home. I’m obstructing roughly every 4 weeks so I’m terrified I will go to Cornwall, take ill and end up in hospital down there. I had already googled how far away the holiday home is from the nearest A&E but on the ward round we raised this concern with Dr B. He told us that there are 2 main hospitals in Cornwall- Truro and Penzance. He told Hubby that under no circumstances am I to go into Penzance and that if I become unwell not to call an ambulance but to drive me Truro himself. Hopefully we won’t have to make that journey but at least we know the best place to go if necessary. I’m optimistic that I will get away on holiday but until I’m actually sat in the car being driven home after being discharged I won’t get my hopes up. I have almost been discharged 3 times but a few days before the planned discharge date I’ve taken badly with obstructions or line infections so I know that best laid plans and all that!
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