Last week was a busy and pretty crappy week for me health wise. I had to go and have blood tests done with the nutrition nurses and I had two hospital appointments; one with the gallbladder surgeon in Nottingham and the other with colorectal surgeon at St Marks. I was hoping to have at least one surgery date to write in the diary following these appointments but I came home empty handed on both occasions. Here’s what happened.
I began noticing over the last few weeks that I’ve started feeling really crappy. I’m feel lucky to have been at home for the last 6 months and I have been the most well I have been for years but it felt like things had shifted slightly recently but I couldn’t quite put my finger on it. But years of being sick means I know my body and I can tell when something isn’t right. I have been feeling permanently exhausted and having way more bad days than good. I’ve gone back to spending 2, 3 or more consecutive days in bed, unable to do anything but watch tv and sleep. So I decided to give the nutrition nurses a call and ask if they would do some blood tests to see if there was anything going on.
It turned out that I was severely anaemic with my ferritin levels almost at zero. Usually this would need an iron transfusion to sort it out but last year when I was given an iron transfusion I had such a bad reaction to it resulted in me being in hospital for 6 weeks. So understandably my gastro doctor didn’t think it was a good idea to give me one again and instead is going to start me on some medication to try and raise my ferritin levels to a more normal level. I will need to have bloods done again in 4 weeks and if they’re no better then I reckon it will be blood transfusion time.
On Wednesday I went to the treatment centre in Nottingham for an outpatient appointment with the gallbladder surgeon. I’m sure they have a fancy title and don’t have ‘gallbladder surgeon’ on their business cards but I obviously wasn’t paying attention when they introduced themselves.
Initially I saw one of the surgical registrars (one of the junior doctors) and honestly, I was a bit peeved, as I knew my history would make things complicated and that really it would have been better to speak with the consultant. But I answered all of the questions she had about my past medical history, talked about how the gallstones were found when they did a CT scan on my bowel last year (or maybe even the year before that I’ve lost track of time to be honest) and let her have a good old prod and poke of my tummy.
And then she said “you’re quite a complicated case- I just need to go and talk to my consultant”. So I kinda felt like I had just wasted those 15 minutes cause I could have just spoken to the consultant in the first place. But when the consultant surgeon came in he explained that he had purposefully given my case to the registrar as there was “plenty for her to get her teeth into” and that they didn’t see patients like me very often. Now I don’t mind being used as a training tool, I’m all for student or junior doctors learning but it would have been nice if they had asked me first if I minded being their Guinea pig. I think I was feeling a bit grumpy because I felt so shite from the anaemia and wanted to get in and out and get home to bed.
When the gallstones were originally found the on the scan I was told that I would definitely need my gallbladder taking out. The plan was that I would have it done when they opened me up for bowel surgery because nobody really wants to open me up unnecessarily. I can’t just have it whipped out in a keyhole surgery like most people do nowadays because all my past abdominal surgeries make it too tricky. Going in keyhole would be too dangerous so it would mean the surgeons would need to open me up from top to bottom, going in through my old scar, cutting through all the adhesions and scar tissue and trying very hard not to accidentally perforate any of my remaining bowel or j-pouch. So it certainly wouldn’t be a simple, straightforward operation.
The consultant told me that about 20% of the population have gallstones and don’t even know it. The reason he told me this was because he didn’t think I needed my gallbladder removing. As a result of my bowel disease and endometriosis, from the waist down my insides just hurt but it’s often difficult to pinpoint exactly where it’s hurting and what kind of pain it is exactly. I don’t have any real tenderness or pain on the right side of my abdomen (where the gallbladder is located) and he thinks the gallstones were just an incidental finding because I’ve had so many CT scans because of all the issues with my bowels.
We talked about the risks of having the surgery (there were a LOT) compared to the benefits from having the surgery (there weren’t that many) and decided that it was probably best to leave things well alone. If I have any problems in the future then we can always reevaluate. We also thought it was probably a good idea to speak to the surgeon at St Marks (who I was seeing two days later) and see what their thoughts were. If they were going to be opening me up then they may decide to take it out while I’m on the table but that was a discussion to be had on Friday. So although I went to the appointment hoping to get a date for surgery I felt happy that after our discussion leaving the gallbladder where it is for now was the safest and most sensible option.
Two days later Hubby and I made our way down to London to see the Prof at St Marks. It was 6 months since I had last seen him and had been an inpatient for the tests he wanted doing and I was eager to know what the results showed him and what plan he had to fix me. We got to the appointment a little bit early as the traffic was better than expected but we needn’t have worried as we were kept waiting 3 hours! I knew from past experience that their clinics very rarely run to time so was prepared to settle in and read my book but after 2 hours sent Hubby to ask how much longer we would be waiting. He was told we were next but after another 45 minutes we still hadn’t been seen. Then 15 minutes later we were called in and were surprised to find that we were seeing one of the registrars and not the Prof himself.
I think she found herself surprised to be seeing me too as she clearly hadn’t looked at my notes and so I spent 15 minutes going over my medical history with a junior doctor for the second time that week. Then Prof came in and he also hadn’t looked at my notes so I found myself repeating everything I had just said.
Prof suggested admitting me for tests and was surprised when I told him that we did that last summer following my appointment with him. He then looked through all the test results and when he began talking me through the CT scan my heart just sank and I knew that we had had a wasted journey. He told me that the CT scan didn’t show any specific areas where my small bowel wasn’t working properly and without a specific area to aim for then surgery wasn’t going to be an option. Surgeons need something broken to fix; Prof needed to see a specific area that was inflamed or had a stricture (a narrowing of the bowel) or some other ‘mechanical’ issue that could be resolved with a scalpel. But the scan didn’t give him anything to aim for. There’s no doubt that my bowel doesn’t work properly but they don’t know why and don’t know how to make it better.
The only real option would be for me to go back to an ileostomy (a stoma) again and because of my previous history it was something that the Prof wouldn’t advise. My first stoma was a nightmare- it blocked all the time and I had lots of issues with it which is why after having it refashioned a couple of times I opted for the j-pouch surgery. The temporary loop ileostomy I had in between the two pouch surgeries was really awful. It was high output meaning that I had over 3 litres pouring out each day, the bags wouldn’t stick and would leak constantly and I basically couldn’t leave the house for the 6 months that I had it.
Now I have even less small bowel than I did before which means the stoma has to be made using bowel higher up the digestive track. The higher up you go and closer to the stomach, the more watery the contents are and the more likely it is that the stoma will be high output and difficult to manage. So the chances of me having a ‘good’ stoma are slim to none.
Prof asked if I had considered biofeedback to help with the incontinence issues but I had tried that years ago with no success. I told him I had also considered a spinal pacemaker to stimulate the nerves but when one of his colleagues put a trial one in they hit a nerve and my leg was paralysed until it was removed. He suggested they test me for SIBO (small intestine bacterial overgrowth) but I told him that we had investigated that too last year. My surgeon in Nottingham wrote to one of the other surgical professors asking for a second opinion and if there was anything to try before I went under the knife and testing me for SIBO was one of the things. As was immunosuppressant medication and some other things- all of which we tried and all of which made no bloody difference.
At this point he said that it might be worth getting in touch with my team in Nottingham and asking them for the imaging from the CT and MRI scans that they have done as I’ve been scanned when I’ve been poorly in Nottingham as opposed to being well at St Marks last year. These might show something different and give him something go to work on. But they might not.
We talked about how high risk surgery was for me and how having something done could potentially leave me worse off than I am now. That this along with the fact he doesn’t have anything tangible to fix was the reason he didn’t think surgery was an option for me. He then asked me how I coped. With what? I asked him. Living with this illness and the frequent hospital admissions and the effect it has on my life he said. I just shrugged and said that I have no choice but to cope. What other option is there?
By this point I was fighting back the tears. I had come to St Marks full of hope, especially after the last appointment I had had. I honestly believed he would say he could fix me. I don’t know why I had been stupid enough to get my hopes up. If life has taught me anything it’s that nothing ever goes right for me. Over the last 15 years my health has made my life a complete shit show so I don’t know why I thought now would be any different. Naively I believed that my luck had to turn, that maybe it was my time, that the chips would fall in my favour, that I might have surgery and get some quality of life back.
Instead I’ve come back home with nothing but a feeling of despair, despondency and desolation…the 3 D’s of misery! There doesn’t seem to be anything left to try and so I have no option but to just deal with it. It feels like I’m living with a ticking time bomb in my head and my body. I’m just waiting for the next bad day, for the next flare up, for the next hospital admission. And as much as I try to do some living on my good days, it’s very hard to block out the noise that living with a chronic illness creates in your head.
Part of me wants to go to bed and pull the covers over my head and just stay there. If I hide from the world and all my problems maybe they will go away or at least cease to exist for a little bit. But I know that doing this won’t make me feel better in the long run and that it’s not good for my mental or physical health. So I keep getting up in the morning, putting one foot in front of the other and face what the day has to throw at me. How long I have the strength to do this I don’t know.
I’m supposed to email my team at Nottingham and update them on my St Marks visit but I haven’t been able to. I think by sending that email that it’s admitting that it’s all over. There’s nothing that can be done. And I don’t feel ready for that yet. I think that why I haven’t really told anyone what happened at the appointment and have avoided replying to peoples messages asking me how I got on. I just don’t feel ready to deal with the pity and the ‘I don’t know how you do it’ comments that will inevitably follow. Maybe I am metaphorically pulling the covers over my head and hiding to protect myself from having to deal with the 3 D’s of misery!
I’ve even found it hard to write this blog post as writing about it makes it real. But it is what it is and I’ve survived everything that life had thrown at me so far and I will keep on doing that, no matter how tough or painful it is. Because as I told the Prof, I don’t have any other choice.
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