Meeting with the surgeon

 Last week Hubby was granted special permission to enter the inner sanctum of the ward so he could attend a meeting with the surgeon. To make things easier and instead of referring to him as ‘the surgeon’, let’s call him Mr E. Incidentally, do you know why surgeons are called ‘Mr’ instead of ‘Dr’? It’s cause in years gone by they were awarded a diploma instead of a degree and the university educated doctors didn’t want the title of Dr to be bestowed upon them. In modern times surgeons can choose which title they prefer to use. But I digress...

I had already met with Mr E the week before and had an opportunity to ask some questions but since that first meeting I had thought of more. And of course Hubby had questions of his own. Mr E spent more than 30 minutes on each occasion patiently explaining what he planned to do, the risks and the pros and cons. 

To begin with no colorectal surgeon in the hospital was willing to take on my case. My gastro consultant has tried literally everything to try and help me with the problems I’m having with my bowels but so far nothing is working. I’m in pain almost all the time, I go to the toilet between 20-30 times in a 24 hour period, I suffer from crippling fatigue that leaves me unable to do even the most basic of tasks and am getting frequent bowel obstructions leading to even vomiting faeces 🤢💩 I’ve come off all my opioid medication to see if that would help, tried various drugs and diets and now am practically nil by mouth and being fed intravenously on full TPN (Total Parental Nutrition). My gastro consultant has been arguing with the surgical teams for months in the MDT (Multi Disciplinary Team) meetings that they have to intervene as my symptoms are worsening and I have no quality of life. I had even told the gastro team that if no surgeon in Nottingham would take me on then they needed to find someone in another hospital that would!

But for all that bravado being faced with the reality of surgery is terrifying. Mr E finally agreed only because the recent MRI of my small bowel showed that there was one particular area that was worse than all the rest. Until that point my whole small bowel was showing up as dilated and inflamed and they couldn’t just whip it all out as that would leave me with no bowels at all!

So now Mr E has an area to target he thinks he might be able to help- with the emphasis on might. He has said that he can’t do anything keyhole because he’s pretty certain that following previous surgeries some of my bowel will be stuck to my abdominal wall and if he inserts the instruments in the wrong place he could end up perforating my bowel, which can be fatal. So he’s going to need to open me up the length of my abdomen and again, because of the number of past surgeries, even doing this will be difficult. He says he has no idea what is causing my problems- the doctors have no idea why my bowel is behaving as it is. He has a few theories: 1) that he opens me up and finds I have endometriosis stuck to the bowel. If it is that, might be able to take some of it away but if it’s stuck to the bowel or other organs he might not be able to without causing damage. 2) That he finds I’m riddled with adhesions. This is internal scar tissue as a result of, you’ve guessed it, all my past surgeries! He might be able to cut them but they could be wrapped round or stuck to my bowel and other organs so he might not be able to. And the beauty of adhesions is that when you cut them away the bastards grow back! But if if was this causing the pain I might get some temporary relief. And 3) he suspects my small bowel might be twisting on itself which causes the obstructions and vomiting. Can you see all the mights and maybes involved?!

He has said that regardless of what he finds chances are very high that I will come out of the operation with another stoma. And that is scary. The whole reason I ended up having the J-pouch surgery back in 2013/14 was that the stomas I had were so troublesome. The J-pouch surgery was done in 2 stages and after the first surgery when they take part of your small bowel to create a new rectum by way of a J-pouch they leave you with a temporary loop ileostomy (stoma) and that one was a complete and utter nightmare. 

Reminder of what your insides look like after  the first J-pouch surgery


The temporary stoma I had just gushed and gushed and was classed as very high output- I would lose up to 6 litres a day from the stoma which was why I ended up needing a Hickman line and IV fluids every day. The stoma bags wouldn’t stick and I remember the stoma nurses would spend up to 2 hours a day just trying to get a bag on only for it to leak 30 minutes later. When I was discharged from hospital I couldn’t leave the house cause the bags leaked so often. 

So the thought of going back to that was too awful to think about. But, one thing Mr E said was a complete game changer. Up until this point I had assumed that if I had a stoma again then that would be it. For the rest of my life. And I knew that if I had an awful, high output stoma I would not be able to cope physically or mentally. But Mr E said that if the stoma was awful I would be able to go back my J-pouch. It wasn’t forever if I didn’t want it to be! Knowing that I still have options makes me feel that despite all the risks involved with the surgery that I have to try. At the moment I am not living; I am barely surviving. I need to be a better wife, a better Mum and the surgery gives me a chance at that. As scary as it is I think I have run out of options. 

The only thing that was playing on my mind was when the surgery would take place. Mr E had pencilled me in for the end of July but we have a 2 week holiday planned mid August. We didn’t get to go away last year as I was shielding and we really need some family time after all my time in the hospital so I was hoping to be able to go away and have the surgery afterwards. Mr E is happy with  that so the plan is for me to go and see him in clinic in July and have the op in September 😬