After fistula surgery
That week I spent in hospital after my second fistula surgery was awful. Really awful. I had never stayed solely on a surgical ward before and it honestly felt like a bit of a looney bin. I mean, I can’t blame the other women, being cooped up in a room with no windows 24/7 and being given less than adequate support from the doctors does make you go temporarily mad. I for one was certainly losing my patience. After my surgery, the doctors came to do their rounds and naturally, I thought this would be the time that I would learn what was actually done to me whilst I was under. I thought wrong. All I learned was that doctors who get little sleep and have to do 9am rounds on a Monday morning are nothing short of cranky and are less than enthusiastic to answer any of their patients’ questions. In fact, these doctors didn’t even seem sure themselves about what was done to me and I was left completely in the dark and anxious about what on earth to expect once my bandages had been removed.
Then I was told that my wounds would need “packing” every day for several months, something that hadn’t even been mentioned as a possibility to me before surgery. I wasn’t even sure what “packing” meant! (In case you aren’t either, it’s when wounds are filled with gauze or similar materials to prevent them from healing too quickly. My wounds were about 10-12 cm deep and had to heal from the inside first so needed to be kept open.) Then, just to put the cherry on the cupcake, I was told that my GP couldn’t do the packing, and that I would have to come to London every day to have it changed. WHAT?! “I literally live 2 hours away”, I explained. Plus, I was so ill by this point I could barely move, and I certainly couldn’t leave my house! When my mum asked if they could refer me to a hospital closer to me (though it still seemed impossible for me to get there), they simply refused.
Then I asked the nurse to kindly remove my bandages in case I needed the toilet. She told me that she would get around to it, but that she was concerned that after a day and a half I still hadn’t used the bathroom. She said that the surgeons had put a “pack” inside my bum (sorry for that image…) during the surgery which should have come out “naturally” by now- if you catch my drift. But when I finally got the urge to go to the loo, she hadn’t yet removed the bandages and, in a desperate panic, I then had to rip them off myself (OUCH) and navigate my completely destroyed rear end. It was actually a pretty distressing experience as I couldn’t see anything (obviously, I can’t turn my head 180 degrees like an owl and see down there). I just had to feel with my hands the bomb site that was my bum. After my last fistula surgery (which I was told this one would be remarkably similar to), I simply woke up with one small open wound of around 3 cm and a seton covered with some bandages as expected.
But not this time. Underneath all the bandages, there felt like 2/3 massive cotton packs (like the size of two fingers together) sticking straight out of several deep wounds and there was blood everywhere. I felt physically sick. Somehow I managed to find my way to the loo and was even more worried when I realised that nothing (other than what you’d expect!) had come out. Where was this “pack” that I was told about? After pulling myself together, make-shifting a new bandage and vacating the loo for someone else to use (also ridiculous that there was only ONE to share between about 8 beds!), I called another nurse over and told her that nothing had come out and that I was really worried about the wounds. She told me that there was no “pack” in the first place. Then I asked if the seton that I had already was still in place or if they’d removed it during this surgery and she said she didn’t know! Even the ward doctors were shady when I asked. It seemed like nobody actually knew what was going on. At all. No one seemed to fancy filling me in anyway.
And to add to all this confusion and distress, I was in a shocking amount of pain. I was being given morphine but this made me so sick that I couldn’t stomach anything- probably just as well because (yet again) the hospital failed to offer me food that my Crohn’s could tolerate. I had to rely on my parents coming to visit me daily and bringing me a sandwich like my last hospital stay. Despite the pain, all I wanted to do was go home. No one was helping me here and I felt so alone. Every time I asked a question I either got no concrete answer or just a rude stare as if I had no right to be asking in the first place. I was so frustrated, and I wasn’t the only one. A lot of the other patients were having similar issues with these doctors- the girl in the bed next to me was fighting to have her appendix removed after getting appendicitis 3 times in one year and someone else got told by one of the nurses to “man up” and stop crying over her tonsillitis. The atmosphere was mental; people arguing or screaming or crying left, right and centre!
As for me, I finally reached breaking point one afternoon when a nurse said she had to change my “packing”. This was supposed to be done by the ward doctors, but as usual, after waiting several hours for them to come and see me, they said that it wasn’t their job and didn’t help me. I was then terrified when the nurse who came to do it openly admitted that she had never done this before and had no idea what she was doing. Could this get any worse? Apparently YES. I asked her if this was going to hurt and she just had “I have no idea.” Great. Now, us Crohnies have a high tolerance for pain, but my god. Having this clueless woman yanking out the packing from my 10-12cm deep wounds was easily the most painful thing I have ever experienced. I was clinging onto the side of my hospital bed for dear life and clenching my teeth while my eyes streamed with tears. Then she had to “lightly rinse” the wounds out- which consisted of giving me a full-on shower in my bed with a hose, before noticing that there was some string coming out of my bum. She didn’t bother to ask me about this and started yanking on it, claiming that she was sure it was attached to the “pack” that they had put inside me during surgery. But when it didn’t come out and was AGONISINGLY painful, I quickly concluded that she was playing tug of war with my seton! I screamed for her to stop and she just shrugged it off before ramming some even thicker packing back into all the wounds with a pair of industrial looking metal plyers and taping it all back together with more bandages.
By the time this was over the bed was soaked and covered in blood (as was I) and I was so traumatised I could barely move. I just about kept it together until she left, but then I realised that I would have to go through that EVERY DAY indefinitely and I broke down when my parents came back in. I honestly didn’t think I could handle that ever again, let alone every day. Plus, the bigger picture just got on top of me in that intense moment. I couldn’t believe how long it had been since I woke up feeling anything other than absolutely dreadful. I couldn’t believe how bad things had gotten in this flare up. I couldn’t believe that after almost 7 months I had made no progress in getting my life back, that I’d just tripled my list of debilitating issues.
I just wanted to be alone, so my parents went to get something to eat for a bit. I had just calmed down from the point of being absolutely hysterical to just being very upset when a male nurse who I hadn’t seen before (and who had evidently eavesdropped my entire meltdown) decided that this would be a good time to come and preach to me about Christianity. He said that if I only let God suffer the pain for me then everything would be hunky-dory. Don’t get me wrong, I have nothing against Christianity, or any religion for that matter, nor their followers. But there is a time and a place, and this was NOT it. So, after being accosted by him who set me off crying again, I just laid in bed helpless and in agonising pain wondering what the point of all this was.
Luckily, the next day my real saviour came to the rescue! A new doctor had been assigned to the surgical ward and he honestly saved me. First of all, he single-handedly got in touch with my surgeon to tell me exactly what I’d had done. Then, he wrote a referral letter for my local district nurses stating that they should come and see me at home to change the packing daily because I was bedridden. Then, he offered to change the packing PROPERLY to try and help me get over any anxiety I had about that. And rest assured, although it was still a far from pleasant experience, having him change it was bearable at least. So, that night I was discharged and after the bumpiest car ride from hell (I had to lie precariously across the back seats of my dad’s car with various seatbelts digging into me because there was absolutely no way that I could sit down), I finally made it home; exhausted, in pain and emotionally drained.
Recovering at home
The next few weeks were not much better. After realising that what had actually been done was that I’d had the fistula tracks “laid open”, something I was told wouldn’t be done because of the risk of incontinence, it quickly became apparent that that prospect was very real. I had no control. Zero. Whereas before I was running to the loo 20+ times a day which was bad enough, now I couldn’t make it. I couldn’t even tell when I needed it, it just kind of happened. One more worry to add to the list. Would I be like this forever? How could I live like that? It was totally humiliating even though I never left the house. I now had the bowel of a 90-year-old (and very sick) woman. I frantically googled to see if anyone else had experienced this and some people said that it may wear off soon, so I had to hang on to that hope. But that didn’t make daily life any easier. I was still in a lot of pain and I could no longer take the pain medicine given to me in hospital, so I spent weeks literally not moving from the downstairs sofa because of the pain. My mum tried to make me eat the odd scrambled egg or toasted sandwich, but my weight and appetite had plummeted even further. I just laid there, day-in day-out waiting for the only social interaction I had: the district nurses. They came at a different time every day and the nurses themselves varied. There were some nice ones and some not-so-gentle ones, but nothing could ever be as bad as the nurse at the hospital, and slowly the packing changes became a little less painful as the wounds started to heal.
The end of the treatment road
This went on for about 2 months, all the while I was worrying about what on earth we were going to do about treatment- though I knew nothing could be done until I was in a better state after the surgery. Eventually, I was called for my surgical follow up back in London to discuss exactly that. I knew that there was only one other medicine that I hadn’t tried: Vedolizumab. But I had researched the drug extensively and knew of its limited success, its side effects and that it could take over 14 weeks for it to show an effect, if it was even going to have one that is. I also knew that my prognosis was bad and having failed so many drugs consecutively by now, it was unlikely that this one would work. My doctors confirmed my suspicions and shared my confusion about what the next step was. After a little more time of reflection, I was told that I essentially had two options.
The first was another dreaded clinical trial (in case you haven’t read my previous articles about that, it didn’t go too well!) It would not only be a commitment of several years, but also incredibly dangerous. It would involve chemotherapy, stem cell harvesting and transplantation as well as blood transfusions and the “re-setting” of my immune system entirely. People had died in the original study a few years back and neither my doctors nor I were sure if my body could make it through all that, especially in the sorry state I was in after this devastating flare up. Not to mention the fact that it was double-blind, meaning I may go through all the trauma of cancer treatment for no clinical benefit whatsoever. And who’s to say that this would even work? It was such unknown territory that I knew from the moment they brought it up that I couldn’t do it. What’s more, I was absolutely desperate to go back to university in 2020, that was my very last chance before my degree was scrapped.
So, that brings us to option two (if you could call it that). Surgery. Major, irreversible surgery. One of my consultants initially suggested a resection of one of the several awful strictures I have, but things were so bad and well-spread that after one meeting with a colorectal surgeon, it became clear that doing this alone would be a complete waste of time and wouldn’t really solve anything. My entire colon and rectum were pretty much unsalvageable, and a good chunk of my small bowel needed removing. A total pan proctocolectomy was my only real option. But even though this was the opinion of the surgeon, my IBD team were still hesitant to put me through this at my age (I am just 20 years old). They were also concerned about the fact that even the most extensive surgery possible wouldn’t solve everything- I still had issues in my stomach and oesophagus when I was diagnosed and who’s to say that the disease wouldn’t return with a vengeance in the rest of my small bowel? But frankly, I am out of options. After years of fearing the end of the treatment road, I had finally got there. This surgery is my only real shot at getting my life back. I can’t carry on how I am, so I have to take it. And that’s pretty much where I’m at now. I have been on a liquid diet (again, yawn) for over two months now and its not going well at all. My IBD team thought that putting me back on EEN would buy everyone some time (as has been standard procedure over the years), but even that, the solution that always worked for me, is not cutting it anymore- yet more proof that something drastic needs to be done.
So, as it stands right now, I am really trying to boost my nutrition as much as possible before surgery by drinking as many bottles of Fresubin as humanly possible in attempt to counteract my symptoms. It’s September 22nd and I was told that because my case was relatively urgent, my surgery should take place between September and October. I got a call a few weeks ago about my pre-op assessment, which was supposed to take place 3 days ago. But as usual, I felt entirely let down when they cancelled it out of the blue and postponed it for 3 weeks. Despite our best efforts, we have only managed to bring this forward by 6 days through scavenging for a cancellation. So, like always I am waiting, waiting for something to happen.
Looking forward
Usually, this would be where I write my “looking back” section, where I reflect on what has passed. But as this is such a momentous time in my life, I feel it is only suitable to look forward. Since 2011, I have battled day and night with my Crohn’s. I got some respite here and there, but I never achieved the true “remission” that I always heard other people talking about. I just haven’t seemed to find something that just works for me. Perhaps the surgery is it. I wouldn’t be human if I said I wasn’t nervous, after all one of my biggest fears growing up was surgery- I definitely didn’t anticipate having half my insides removed! But it has got to the point which I am sure some of you Crohnies will recognise where I don’t care anymore. I am tired of feeling awful, I am tired of having my life dictated by my illness- what’s left of it anyway. So, if undergoing this major surgery and taking months to recover is my only chance at some shred of a life resembling normality, then I’ll take it.
I’m not naïve, I know how hard the surgery will be and how much pain I’ll be in and that after everything it still wont “cure” me. But if I even get a few months of feeling reasonable before some problems return then that’s something. At the very least, I hope that my flare symptoms will be much easier to manage with an ileostomy and stoma bag, even if I have to adjust my routine, my diet and my activity to suit it. But even though I don’t want to be ignorant to the risk of recurrence (or just the risk that whatever else is already elsewhere causes me issues), despite everything that’s happened to me I still hold on to the hope that maybe, just maybe I’ll get my life back. That maybe I’ll be able to return to university and finish my degree, even if all my friends have graduated by then. That maybe I’ll be able to eat normal food, even if this is limited. That maybe, I’ll be happy again, even for a short while.
Fingers crossed.
Me and My Crohn's 