Being admitted
I was admitted to hospital on March 15th, 2019 for my first ever surgery. Even the journey to the hospital was a nightmare. I felt like I’d reached an all-time low with my internal symptoms, and my extra-intestinal symptoms had also reached rock bottom. The erythema nodosum which I had suffered from so badly several years ago came back with a vengeance, this time accompanied by extreme joint pain- later confirmed to be enteropathic arthritis. In the lead up to my admission, I had spent my days going to the bathroom in excess of 20 times, vomiting constantly, permanently feeling like I could collapse from dehydration and being relatively immobile. I could barely take a proper shower as my legs couldn’t handle the strain and to make it to the toilet I was forced to use some old crutches we had lying around from my dad’s previous motor bike accident. And now I also couldn’t sit down because of the pain of the abscesses, which were also causing on and off fevers.
After a car ride from hell, I finally arrived at the A & E department in my hospital in London- this was the quickest way to admit me to a ward. I went through the usual process of being weighed and getting a canula fitted and was then sent up to the gastro ward. I was thrilled to be told that, for the first time ever, I would be getting a room and a bathroom all to myself! It was actually pretty cool to be honest; I’d had nightmares about my former times on the children’s ward and didn’t know if I could bare the sleepless nights or the “jingly jangly jungle” theme tune playing perpetually on the tv. Instead I had my own space with a rather nice view of London.
Eating whilst in hospital
I was told that because I was so unwell I could try a liquid diet whilst I was in the hospital, but that soon proved almost impossible. Anyone who has done a liquid diet before knows how difficult it can be to stomach, particularly when you are especially unwell and feeling nauseous to begin with. Though I don’t wish to sound like the ungrateful patient, I am afraid to say that the hospital staff did not adequately cater for my dietary needs in the slightest. They told me that they barely had any Fresubin and that there wasn’t enough space to refrigerate any- not even one bottle at a time. What they did have was the incorrect calorie concentration and flavours that I wasn’t used to and couldn’t stomach, and I was told that they couldn’t order any more. Then they started giving me Fresubin with added fibre! This obviously only made my symptoms worse and ended up making me even sicker than I started out. Not to mention the fact that, although I understand hospital staff are busy people, they only came to give me a Fresubin every 4 hours or so (and only when reminded), when they are supposed to be given every two hours- and rarely did anyone come when I pressed the call button. After several days of this I gave up and had to return to normal food. Or should I say, hospital food. Hospital food still astounds me and given the recent uproar in the quality of food given to patients, I would just like to share my disappointment with regards to which foods are given to gastro patients in particular. We are gastro patients for a reason, we have digestive issues. Although everyone is different, common trigger foods include dairy, spice and fibre. So, 99.9% of the patient menu which featured macaroni and cheese, 5 bean chilli, various curries etc.- all of which were totally inedible for me. I requested both an “allergen free” menu and a vegan menu (even though I’m not vegan!), but the most I was given was a microwaved chicken breast that had as much flavour and texture as a piece of cardboard, and some carrot which resembled watery baby food. It even took the catering team over an hour to track down soya milk for some cereal, even though it was advertised on the menu. Just one week in the hospital and my bowel frequency went up by at least 5 or 6 times a day and my abdominal pain skyrocketed. And the response when I complained: that I should just get my parents (who live about 2 hours away) to bring me all my food every single day. How accommodating.
Abscess surgery
Anyway, now that my little rant is out of the way! I went into hospital on a Friday and was soon told that there was a slot for me to have my procedure on Monday. I had all the usual tests beforehand, including a pregnancy test and another MRI, and soon I was given the all-clear. I had to be wheeled down to theatre as, in addition to my arthritis and erythema, at this point one of my feet had swelled up so badly I couldn’t physically put an ounce of pressure on it. (I did have an ultrasound to check for potential blood clots, but nothing was found- thank goodness!) All I remember was getting to theatre and being greeted by a rather strange surgeon who asked me to “explain in [my] own words what I wanted from this procedure”. Was that a trick question? Was he expecting a detailed medical answer? Being a pretty straight-up kind of person, I replied: “For you to fix my bum”. He laughed and said that no one had ever been that honest before. And in a matter of minutes, I was knocked out.
When I woke up from the anaesthetic, I felt surprisingly okay. I was expecting a lot of pain, but I couldn’t really feel anything; I suppose that was the pain killers. I stayed comfortably in the recovery room for a couple of hours before being taken back up to my room. I was soon visited by the doctors who informed me that the procedure had gone well and that I had had the abscesses drained and a seton fitted. At the time I was all bandaged up, so even when I eventually went to the bathroom, all I could feel was a lot of gauze. But when that was eventually removed, I got to see (well, feel) my seton for the first time. It’s a strange sensation having surgery and then coming face to face with your new body. And it was particularly strange for me as I couldn’t actually see what had been done given its slightly awkward location! But I could feel a 2-3 cm cut with a loop of string in it. At first the string was a little scratchy, but I could finally sit down! I remember the first time I sat on my hospital bed after surgery- it was amazing! The lump had completely gone! The doctors told me that I would need to use dry gauze on the wound to absorb any leakage probably for quite a few months and carry on with the antibiotics that I’d been taking for a few weeks to prevent septicaemia, but other than that it should be under control for now.
Bad news
Now all that was dealt with, it was time to think about my actual treatment again! Two days after my surgery, I was visited by two of the main research team and the head of IBD. Unfortunately, they brought bad news. They told me that there was actually a set time frame in which I needed to have been given the first dose of the trial drug (Risankizumab) after completing the screening faze, and because of the delays and all my complications, the deadline had passed. They tried to appeal to the main association running the trial, but they denied my request to continue despite the extreme circumstances. If I wanted to enter the trial, I would have to re-start the entire 3-4-month enrolment process and go through the (incredibly painful) investigative procedures all over again, which would be made particularly difficult given the surgery I’d just had. My heart sank. Was this really happening? Even the head of IBD told me that at this point he wouldn’t blame me if I told the researchers, in no uncertain terms, to “do one” and took Ustekinumab instead. Honestly, I was tempted. I really didn’t think I could handle doing all that to my body again, not to mention the fact that it would massively eat into the time I had to sort out my health before the new university year started again! After multiple consultations and discussions, I decided that the trial wasn’t meant to be and that I would take Ustekinumab instead- which I now could receive much faster as an inpatient.
Anaphylactic shock
So, after that bombshell it was actually my 20th birthday on the 21st of March. I know, what a great way to spend it- having just had surgery, stuck in the hospital feeling like death and having just been told that the treatment I’d spent months preparing to receive had just collapsed. But hang on a minute- things were about to get 100 times worse, of course! I started my birthday with a modest bowl of soggy cornflakes and then got a call from my mum saying she would be at the hospital at about midday. So, I spent my morning optimistically reading a book from my university reading list for next year and getting the usual blood tests done. After my IV fluids were given, a ward nurse told me that it had been decided that I was to receive an iron infusion in attempt to treat my anaemia. I was a little confused by this. Don’t get me wrong, I knew I was anaemic- I had been since I first became ill. But it was never bad enough to cause any kind of intervention, or so I thought anyway. The doctors however were adamant that it was either that or a blood transfusion- not something I was about to volunteer for, so I agreed to the infusion. The nurse brought the bag of mud coloured fluid into my room at about 11:45am, so I thought that she’d just hook me up and then be gone by the time my mum got there. But she informed me that she had to stay for a bit just as a precaution and to fill in some paperwork. I asked why the “precaution” was necessary and she just said that some people have reactions like skin rashes to iron sometimes in the first 20 minutes or so of the infusion. But she told me that it was pretty rare and that I’d be fine. Famous last words.
The funny part was that when she told me she had to stay, I was actually a bit annoyed because I kind of needed the toilet! I thought if she hooked me up, I could then wheel my drip to the loo and go in peace, but now that clearly wasn’t going to happen. So, I sat on my bed as she connected me to the infusion and started the drip. She just sat in the corner of my room and started filling in some forms. I watched as the iron travelled down the tube and reached my canula thinking how gross it looked. Shortly after it entered my vein, and I mean literally a few seconds, my stomach started to feel really peculiar. I thought at first that it was just my usual cramps or discomfort, but in a few more seconds it started to get worse. Could it be the iron? No, it’s probably nothing I told myself. You’re just being paranoid because the nurse told you about the risk of a reaction. No, it DEFINITELY is a thing. About ten seconds in and my stomach felt like it was contracting, and I started to feel really dizzy all of a sudden. I just about had time to mutter “I feel really weird”, the nurse looked up and said (laughing) “weird how?” And in that moment I came over all hot, my lungs felt like they had collapsed in on themselves and my head flung backwards like some weird reflex that I had no control of. That’s when I blacked out.
I am not sure exactly how long I was out, but I started to hear this faint buzzing and people shouting my name. It’s hard to explain, but I felt like I was getting slowly closer to the sound until it suddenly came into focus and I tried to open my eyes. My eye lids felt so heavy that I could barely see out, but what I did see was about 20 unfamiliar faces in hospital masks crowding around my bed, manically trying to wake me up. Then I realised I was wearing an oxygen mask and that someone had pulled my top up from my chest and I had a whole bunch of monitors attached to me. Then I felt someone squeezing my bare legs (trying to get the circulation flowing) and someone else shouted “flush the iron out and then rip out that canula now!”. I was being stabbed in all manner of places on my arms and hands and, although everyone was trying to talk to me, I felt completely paralysed and couldn’t move my mouth to speak. Then in amongst all the commotion, I faintly heard my mum outside my room in a panic demanding to know what was going on before pushing through all the people. I remember seeing her blurry face at my bedside in a daze before someone whisked her out of the room. I could feel myself beginning to drift away again and then one doctor said that she couldn’t feel a steady pulse and told someone to give me adrenaline immediately.
The rest is all a bit of a blur, but I believe it took over half an hour to get me to a relatively stable point, and even then my heart was not beating regularly. I had to stay attached to various monitors and have ECG scans repeated for a while afterwards to check there was no lasting damage. When all that was going on, my mind was completely numb; I really didn’t think or feel anything much. It wasn’t until after things had settled down, all the emergency staff had left, and the doctor explained to me what had happened that it really hit me like a ton of bricks. I was told that I had gone into anaphylactic shock and that it was the quickest they’d ever seen anyone react to an iron infusion like that. If I had been out for any longer and my pulse hadn’t recovered with the adrenaline, there’s a pretty good chance I would have gone into cardiac arrest or ended up with long term damage to my body. Once my mum was allowed back into my room, the nurse stepped out for a second and I had a massive realisation about what had just happened, and about how lucky I was that it didn’t escalate any further. It was only for a few seconds, but I did let out a few tears. My mum was equally shocked and overwhelmed; she had just turned up in the middle of all the chaos with a dairy free Carl the caterpillar cake, some banners and all my birthday presents ready to wish me a happy birthday!
I did eventually get my cake, which was delicious! And I spent the rest of the day, despite being monitored intensely by the ward staff, opening presents and perpetually thanking the nurse who stayed with me at the start of the infusion for pressing the emergency buzzer when she did- she was just as freaked out as I was apparently! That was easily the weirdest, the scariest and the worst birthday ever. And after that experience which I certainly didn’t want to repeat any time soon, I decided that I’d just have to be anaemic for the time being!
The following day I was told that it was safe for me to start Ustekinumab- albeit with someone in the room monitoring me after what happened the day before! As it happens I was fine, and I felt so relieved to finally have been given some kind of treatment. Later that night I got my antibiotic prescription and was discharged home after easily the most traumatic hospital visit I’ve ever experienced.
Looking back
Firstly, I would like to comment on the theme of “invisible illness”. Crohn’s is commonly labelled as such because, although there are many extra-intestinal symptoms as well, the main symptoms are not obvious in comparison to a typical “disability”. When I was admitted that March I could barely stand up, and I certainly couldn’t walk unassisted. I was given a wheelchair-style seat in A & E, but there was a shortage of proper wheelchairs so this particular one could only be wheeled from behind i.e. not by me. When I was called to get my bloods done, the nurse stood in the doorway of her consultancy room and shouted my name, so I just kind of reached my hand up to show that I needed to be wheeled. Her reaction was priceless. She just tutted and rolled her eyes, as if she was bitter about the fact that she had to walk several meters and push me into her office and gave that disapproving stare that said: “why are you in a wheelchair, you look fine”.
Then when I was on the ward, I was given IV antibiotics which did in fact help my legs to a point where I could just about walk unassisted to the toilet. So, when a pre-arranged porter arrived in my room to take me down to surgery and saw me hobble to the toilet, he started grilling the nurse about why a porter had been ordered for me when I was clearly able-bodied, as if I couldn’t hear him and wasn’t even there. Disability is always a difficult topic to discuss, mainly because the line between disabled and able can be pretty thin in some cases. Was I not disabled enough to deserve a wheelchair or porter? Unfortunately it seems that a lot of the time I have to justify my illness and its effects on my body to other people in order to get help, simply because they don’t understand the nature of chronic illness and assume that I look “normal”, so I should automatically be able to do the same things that “normal” people can do. I only wish this stigma didn’t exist.
In terms of my nightmare infusion, it’s a real lesson in better safe than sorry. If my ward hadn’t of prepared adrenaline shots just in case of emergency, or if that nurse had neglected her post for even a few minutes and left me alone, I’m honestly not sure where I’d be. I always say that even the small aspects of having a chronic illness humble me and make me view life from a different perspective, but my experience with anaphylaxis brought that feeling to a whole other level. It made me really appreciate being alive, despite how bad I might be feeling, and made me determined not to take anything for granted in the future.
Me and My Crohn's 