Hope extinguished

Last Thursday I had an appointment in London with a private colorectal surgeon. But that’s not really the start of the story; for that we have to go back 4 weeks earlier when I ended up in the clinic of Mr E, the surgeon in Nottingham. 

I had received a NHS text reminding me of an appointment at the Treatment Centre in Nottingham. Thing was I didn’t have an appointment in my diary, nor did I have a letter. But I assumed that I had either misplaced the letter or forgotten to write the appointment in my diary (or both) so turned up on the said date. Usually I see my gynaecology team at the Treatment Centre every 3 months for an injection that puts me into chemical menopause to manage my endometriosis. I couldn’t remember when I had last had my injection but the 3 month mark had to be approaching so I assumed that the appointment must be for that. But when I went to the clinic they had no details of an appointment for me that day. It was only when I got my phone out to show them the text and insist that I really did have an appointment that the receptionist pointed out that the appointment was in a different clinic. 

Feeling like an idiot I went to the clinic detailed in the text which turned out to be where I had been in January when I had been seen by the gastro doctors in the IBD clinic. So I assumed that it must be for some follow up as I had only been out of hospital for a few weeks. But nope- wrong again. After being weighed and moved from the main waiting area to a corridor lined with clinic rooms on one side and hard, plastic chairs on the other I saw Mr E’s name on one of the doors and realised I was here to see the surgeon. This was quite out of the blue and as I waited I wondered if he would tell me that he had a date for my surgery. Wrong again. 

He had seen that I had been admitted again recently and wanted to follow up with me as he hadn’t been able to get up to the ward to see me while I was an inpatient. We had a very lengthy discussion of the pros and cons of me having surgery:

Pros: 

🔹That it could fix me and stop or reduce the frequent hospital admissions.

🔹 They could take out my gallbladder and my ovaries at the same time which should help alleviate the problems I was having with both of those.

Cons: 

🔹That the chances of me being fixed were extremely slim. 

🔹That I would likely end up with a stoma again and the whole reason I had surgery to reverse the stoma and create the j-pouch was because the stoma was a complete nightmare (it was high output, the bags would leak all the time, it would stop working which landed me in hospital, the pain was awful and it generally made my life a misery). 

🔹That having surgery could leave me worse off.

🔹 That all surgeries carry risk, but with my history the risk was greater.

I like the fact that Mr E isn’t the type of surgeon that just wants to cut you open. He considers all the options and only if surgery is the right one will he do it. When I’m really poorly and end up being admitted to hospital I would give my right arm to have the surgery. But it’s the fear and the frustration that takes over my rational thinking and I just want a solution to the pain I’m in at that moment. When I’m at home and I think about having surgery it bloody terrifies me. Partly because I know it’s the last option that’s available, having tried everything else the doctors have recommended but mainly because I know that I can’t go back to having a dysfunctional stoma. A stoma where the stool is pure liquid and litres and litres of it pour out causing the bags to leak, making it impossible to leave the house, to sleep through the night, to have any quality of life. I’ve been there, done that and I know that physically and mentally I wouldn’t be able to cope. And that seems to be the only option available. 

Or it did until I started doing some reading about pouch refashioning. 

This is revision surgery to the J-pouch to get it functioning better but means I get to stay ‘joined up’ and continue to go to the toilet normally rather than need to have a stoma bag. I’ve watched videos on YouTube about it, which I know makes me sound like a teenager watching make up tutorials, but these are videos of doctors speaking at medical conferences, with clinical case studies and evidence to back up any claims they make. I began to wonder if this could be the answer to my prayers so I asked Mr E whether this could be an alternative surgical option. Trouble is it’s a very specialist area of colorectal surgery performed by a small number of specialist surgeons. And he’s not one of them. 

So we made a plan for him to write to St Marks again and ask for their opinion on whether I might be a candidate for pouch revision surgery. If I was then I would have my surgical care transferred to them and join their waiting list. If I wasn’t then I would have a decision to make on what surgery, if any, to have done in Nottingham. I left the appointment feeling reinvigorated and buoyed by this new plan. If I could get my pouch revised then maybe, just maybe, things would improve, I would get some quality of life back and begin to get better. And once I started to think about the possibility of having some kind of a normal life I was impatient to get the answer. 

So I began looking into which surgeons at St Marks carried out the pouch surgeries. Things had changed in the 8 years since my pouch was made. Prof P that had done my pouch surgery retired soon after and Prof C who had done some further surgery on me had also retired from surgery and was just working part time in a consultative role. So after a bit of Googling I had the names of the current surgeons and I then looked to see which of them saw patients privately. And it just so happened that the top pouch surgeon in the country had a private practice so I called his secretary and made an appointment. Funny that when you’re paying you can be seen the following week eh?! Part of me felt really guilty for ‘jumping the queue’ because I’m a big believer in the principle that healthcare should be free for everyone and based on clinical need not who has the biggest bank balance. But I’ve also spent years suffering with this illness and if I was able to spend a few hundred pounds to get an answer quickly then wasn’t that worth it? 

The St Marks surgeon, let’s call him Mr J, saw private patients in the centre of London, just off Oxford Street. I had initially planned to go down there on my own but decided that driving there and back would be too tiring and I wasn’t sure if I would be well enough to handle a train journey (and who knows if the trains are even running these days what with all the strikes!) Plus I thought it would be a good idea for Hubby to be there to ask any questions or to take it all in incase there were things that I ended up forgetting after the appointment. We had planned to drive down the night before and stay with some friends in South Harrow but that was the week when there was lots of snow and Big Girl had mock exams so we didn’t want to be away from home for too long. So we got up at the crack of dawn on the morning of the appointment and headed Down South. 

We parked at Cockfosters tube station and got the tube all way into central London. The clinic was proper fancy- there was even a doorman with an umbrella. The whole place wreaked of money and I felt quite out of place with my dungarees and Doc Marten boots sporting my ‘fuck the tories’ badges! I did get a few admiring comments from people on the tube though. If you like them you can buy them here

Mr J was as lovely- exactly as other patients on the Facebook groups I’m part of had described him. He asked me what had brought me to see him so I gave him a brief overview of my medical history and explained I wanted to find out out about pouch revision surgery. He let me go through the long list of questions that I wanted to ask and he had obviously reviewed the CT and MRI scans I had had Mr E’s secretary send to him prior to the appointment. 

But then came the crushing blow. He said that I wasn’t a candidate for pouch revision as it’s generally only done in patients that have a clear issue with the pouch that surgery can fix such as a leak. And not only did he think that surgery on my pouch wasn’t a viable option, he thought that given the issues I had experienced with previous stomas that having surgery and going back to a stoma probably wasn’t a good idea either. He said that my bowel is clearly dysfunctional but because the cause is unknown a scalpel isn’t the best fix for it. That infact there may not be a fix for it. He said that I would need to decide whether my quality of life at the moment is poor enough for me to want to take the chance on surgery and a stoma given the fact that I could end up in a worse state following it. He did say that as I need to have my gallbladder and ovaries removed there wouldn’t be any harm in Mr E opening me up and seeing what was going on in there and if there are any adhesions (scar tissue) that he could cut away that might ease some of my symptoms. But he also pointed out that the chance of that being a real, long term solution was very slim. 

So after 30 minutes of discussion with Mr J, Hubby and I left the fancy offices. As we got into the lift and the doors closed I could feel tears stinging at my eyes but I blinked them away and tried to swallow down hard, suppressing all the emotions that were threatening to erupt. I felt crushed that this glimmer of hope that I had been holding onto was now extinguished. But I was also angry with myself for allowing me to get my hopes up. History has taught me that if there’s a 1% chance that something will go wrong with my health or a procedure then it does. It always happens to me. And I don’t know why I thought this time would be any different. But I had thought that maybe, just maybe, my luck would have changed. 

We got outside the clinic and Hubby hugged me tight and that’s when the tears flowed. Instead of this appointment being the start of a new path it signalled the end of the road. Where did I go now? What was I going to do? Is it going to be a case of ‘put up and shut up’ with how things are and just deal with the hospital admissions as and when they arise? Am I going to be on and off steroids to control the crohns flare ups? Am I going to be on immunosuppressants forever? Are the immunosuppressant injections even working? How will I cope with my continued ill health as I get older? All of these things were going round in my head. So what did I do? 

Pack up all of these worries, fears and emotions and push them down, deep inside, just as I always do in order to be able to cope with life. I think if I spent too much time thinking about my life and the impact my health has on it then I would be so depressed I would never be able to get out of bed! Plus we had theatre tickets for a matinee show! We thought that since we were in London without the kids we might as well make a day of it and had booked to see Lemons, Lemons, Lemons, Lemons, Lemons. 

It was a play starring Jenna Coleman and Aidan Turner (staring at Poldark for 80 minutes was no hardship!) It’s an unconventional love story unfolding before and after the passing of a Quietude Law- a new law restricting the number of words a person can speak each day to just 140. It was clever how they continued to converse without words but I have to say that despite 2 brilliant actors it wasn’t my favourite thing I’ve seen in the West End. But it was nice to be out with Hubby as we don’t get the chance to do much stuff together. On a day to day basis even if I’m having a good day and even though Hubby works from home he’s in his office all day and then I tend to be in bed sometimes by 6/7pm just as he’s finishing work. On a bad day I won’t be able to get out of bed and then he’s busy working, sorting out the kids and the dog and trying to keep the housework and laundry ticking over. Maybe not spending much time together is the secret to our relationship surviving almost 24 years! 

Before we had gone into the theatre I had gotten a phone call from Big Girl saying that school was closing early due to the snow. Although there wasn’t a single snow flake in London the snow had come down thick and fast in Nottingham, so much so that Big Fella had gone sledding with his friends. So instead of staying in London for dinner we decided it was best to head home incase the weather caused problems on the motorway. Luckily the M1 was fine and in Nottingham all the main roads were ok (despite not having been gritted) and it was only when we got onto the side streets near home that there was snow on the ground. 

The trip to London left me physically and emotionally exhausted and I spent the next couple of days in bed recovering. Since the appointment I’ve tried not to think about what’s next because to think that now there’s no hope, nothing that can be done to make things any better is just too souls destroying. For now I’m going to take life one day at a time and focus on enjoying the good days and hope that the next hospital admission doesn’t come around too quickly.