I got a phone call from the hospital on Monday asking if I could attend an outpatient appointment with Mr E, the colorectal surgeon on Wednesday at 9am. Of course I said yes even though Wednesdays are usually spent in bed recovering from Tuesday nights yoga.
Since getting the phone call I had been wondering if this meant that they were starting surgeries again and that’s why I’d been called to the outpatient clinic. Would I get there and be given a surgery date or would I just be fobbed off with ‘NHS backlogs’? My mind had been going a million miles an hour thinking of all the different outcomes and trying to predict what would be said at the appointment.
I got to the hospital this morning and went through all the Covid related questions they now ask you as standard. I was Mr E’s first patient of the day so luckily there wasn’t a long wait to be seen. I was called in and the first thing he commented on was my pink hair. We then talked about my admission in Cornwall and he reviewed the CT scans I’d had done down there. He said they looked very similar to the previous ones that had been done when I had bowel obstructions earlier in the year and that they confirmed the need to operate.
Now we get to the nitty gritty. “Have you got a date for the surgery?” I asked. No, was his reply and my heart sank. I really had expected him to open his diary and book me in so to be told that they were still only operating on cancer patients and those with life threatening bowel disease was crushing. He told me that the earliest it would be done is spring 2022 but that he needed that time to consult with the surgeons at St Marks hospital in London. He told me that he wanted to get a second opinion to make sure that his surgical plan was sound and that there weren’t any other options that he might have overlooked. To be fair one of the reasons I have so much confidence in Mr E is that he’s not a ‘gung ho, let’s have a bash and see how it goes’ kind of surgeon. Most surgeons are incredibly arrogant so the fact he’s willing to seek advice from his peers is refreshing. He said that St Marks may want to see me in clinic, which I’m fine with, but I told him that I would prefer the surgery to be done in Nottingham so I’m close to family and on the gastro ward with all the nurses and doctors that I know and trust. He did say that if St Marks recommended the removal of the J-pouch then that would have to be done down there as it’s a huge op and not one that he does unless in an emergency.
To get the ball rolling he went through the consent form with me which was pretty terrifying to be honest. Because he doesn’t really know what’s wrong with me he doesn’t actually know what he needs to do to try and fix me. So he basically had to consent me for anything and everything! The basic plan is to do a laparotomy (a fancy way of saying they’re cutting me open from the top of the abdomen to the bottom) open me up and see what’s going on in there. If there are adhesions (bands of scar tissue) around the bowel he may be able to snip them away, but they may be stuck to the bowel. The same goes for any endometriosis. He thinks that my bowel and/or my pouch may be twisting so to remedy that he’s suggesting defunctioning the pouch and me going back to having a stoma. Doing this will mean he can stretch the bowel taut to stop it from twisting but he can’t promise that if I end up with a stoma I won’t have the same problems I had with my previous ones. He said that if the pouch is twisted or looks really damaged or inflamed then he would have no choice but to take it out. This is a much bigger operation as they have to go really deep into your pelvis and the risk of complications increases. If the pouch is removed I would end up with what’s affectionately known in the IBD world as a ‘Barbie Bum’. This is basically where they sew your arsehole shut and it is irreversible. I’ve read blog posts of people who have had this op done and it’s really not nice; the risk of getting an infection in the wound where they’ve sewn your bum shut is super high and the recovery period is really long.
Aswell as doing all the work to my bowels while they’ve got me open the gynaecology team want to have a rummage around and will attempt to remove my ovaries. I’ve had to consent to a full hysterectomy incase they decide to do that but Mr E and the Gynaecology consultant both think that would be too risky given the high probability that my insides are a bloody mess.
Because of where they’re going to be operating there’s a risk that my bladder could be damaged so Mr E has suggested putting stents in my urethras (the tubes from the kidneys to the bladder) to protect them. There’s also a risk he could damage my vagina (although the surgeon who made my J-pouch sewed my bowel to my vagina so I’ve been there, got the tshirt!) There are other risks to the operation including the standard ones of blood loss and infection right up to the bigge of loss of life. As a general rule when doctors or surgeons have said to me in the past that there’s a 1% risk of something going wrong, I’ve always been that 1%. I’ve had complications in the past that the doctors never even anticipated so when I jokingly said, “so what’s the chances of me dying eh? 1%?” and he answered yes we both knew what that could mean for me. Although it’s scary I know that I have to have this surgery to try and get back some quality of life. There’s so much I want to see and do in the world that I have to take the risk that I could end up dead on the table or that the operation doesn’t make me better (and it could infact make me worse). But if I don’t try then I’m going to be forever trapped by my body and this illness, always waiting for the next hospital admission.
So that’s where we are now. Still waiting for surgery but one step closer. Mr E said he will write to me once he’s heard back from St Marks to let me know what they’ve said and if there are going to be any big changes to the plan then he will see me back in clinic again to discuss it. At least I’ve got a rough idea of when the surgery could happen, but I’m not daft enough to hold my breath as I’m well aware that winter pressures on the NHS could force them to continue to only operate on cancer patients and emergencies. But because I know that it’s not going to be happening imminently I feel like I can relax a little bit and enjoy having time at home with Hubby and the kids.
Comments
Post a Comment