After everything that I’d endured throughout my time in hospital for my stoma surgery, I was thrilled to be finally going home. My last day was mainly tying a series of loose ends, doing all the before-you-leave checks and sorting out prescriptions. But I also had to have my stomach staples removed. I wasn’t exactly looking forward to having about 30-40 staples ripped out of my very sore abdomen, but at the same time there was something almost exciting about being free from what was essentially holding me together and going it alone, as it were! It definitely hurt, but it only took about 10 minutes (as they literally have to yank them out one by one) and so it was over pretty soon. I did one final lap of the ward and ate some tea- by which time the pharmacy had finally finished preparing my pain relief to take home, so all seemed clear for my discharge.
But, as anyone with a chronic illness knows, things just simply don’t happen that smoothly. My parents started putting their coats on and packing up of all my stuff, so I decided to go to the loo one last time before the 2-hour drive. And that’s when disaster number one struck. (GRAPHIC IMAGERY AHEAD) I went to the loo relatively normally, but when I looked down I was shocked to find the entire toilet bowl literally filled with blood (and not in a “my time of the month” kind of a way!). I started to panic and question whether or not this was actually happening and then I realised that my rear wound had split. Like COMPLETELY. As the blood was gushing out of me I really started to freak out. Was this meant to happen? Should I still be going home? Would it heal on its? Or, of more immediate import, how on earth was I going to leave the toilet and get to a nurse with the bleeding that bad?! In the vicinity of the toilet I didn’t have any dressings or gauze, so all I could do was use about 1000 sheets of hand towel (sorry planet). I then very briskly walked back to my bed and told my parents, who quickly called some nurses over. I had to wait a while, but eventually the ward sister came to help. By then the bleeding had subsided and, as utterly ludicrous as this sounds in hindsight, she said that the registrar hadn’t been overly concerned about this happening and that I could still go home. And for better or (evidently) worse, I did.
After an incredibly uncomfortable semi-upright car journey, I made it home at last. I was relieved but also in pain and completely exhausted. But things only got worse. By the time we made it home it was about 10:30 pm; all I wanted was to get into my own bed and go to sleep, but my stomach had been bugging me all afternoon. I hadn’t eaten anything new, but (possibly a coincidence) ever since I had my staples removed, I’d had a really bad tummy ache and a bit of a pain in my side. By the time we got home it was really bothering me and I remember saying to my mum: “Why can’t I just be sick and get rid of it!” Little did I know. About 30 minutes after this stupid exclamation, the incident that I now refer to as “The Great Purge of ‘19” began. I don’t think I’ve ever vomited or seen anyone else vomit that much in my entire life. And it wasn’t like normal vomiting (sorry again for the graphics…), it was like Niagara Falls and this lasted for HOURS. I literally still can’t fathom where all that liquid came from or how it was stored inside me, but while I was vomiting so much that my mum had to keep running to empty the ice-cream container that I was using because the volume was so great, my stoma was also shooting out so much liquid that my bag needed emptying almost constantly.
It sounds like the scene from a horror movie right? And obviously the more it went on, the weaker and more dehydrated I got, and my already weak body just started shutting down. In the end it was about 6 ½ hours of me lying on the floor being held up by my radiator and my mum (who was also exhausted!) in cold sweats and agony. I honestly wasn’t sure it was ever going to end. Eventually it did, but it was about 5 am by that point and I definitely wasn’t amused. I still have no idea what actually caused this. My IBD nurse said she had heard of cases similar to this after ileostomy surgery, so if anyone else has some insight, I’d love to hear it!
The following day was basically blockage training 101 (even though that is not what caused it, the premise of how to handle it was the same). I very slowly drank a can of coke and ate some salty crisps to re-hydrate and that morning my dad bought Morrison’s out of all the Powerade they had in stock. I stayed in bed for most of the day and luckily later on the bed wedge I had ordered (to mimic a hospital bed) arrived from Amazon, so I was a tad more comfortable. The next few days were a little better, but I’d be lying if I said that my (now open) wound wasn’t bothering me. I hadn’t really sat much before that point anyway, but I was struggling. I managed to go for short walks around my local area and get my food intake back to a good level though; I was coping. On the 12th November I actually had an ESAC appointment in London anyway re- my wound, so I struggled through the journey again in the hope of getting some help.
Unfortunately, I didn’t exactly get the answers I’d been hoping for. The doctor said that people with Crohn’s in particular tend to have healing issues after surgery. He said that it could take 3-6 months to heal but that if it hadn’t healed by then, then it probably wouldn’t full stop. WHAT!!?!?! He tried to then make me feel better by saying that there were “things” that they could potentially do to help me with living with an open wound, but that hardly sufficed to reassure me! What, so as well as having Crohn’s and all its complications and a stoma for the rest of my life, I now also might have to live with an open wound the size of the grand canyon and never be able to properly sit down again?! NO THANK YOU! I was completely blind sighted by this, but as always, I just had to take it and carry on.
And for a few days I did. But then the time had come: my pain relief prescription had finished. On the day that I’d left the hospital I was merely told that I should take tramadol, pregabalin and ondansetron to tide me over when I got home and, being used to living in a constant state of pain and discomfort and having little means of appeasing it, I just accepted that this is what I should do and for the length of time that the ward doctor had instructed. Plus, with all the drama of my discharge day, no one really thought to ask about what would happen when I finished the course- this was weeks away and you really only think about the “now” when you’re recovering from such major surgery. Anyway, apparently time had now caught up with me and the lack of advice and support from my hospital (which is an unfortunately common theme of my posts), meant that I had gone from taking a full dose of pain relief one day, to nothing at all the next.
Okay, so it wasn’t as if I’d been taking these medicines in excess for a prolonged period of time, but apparently it only takes a few weeks followed by an abrupt termination of these drugs to induce severe withdrawal symptoms. This was certainly something I had never experienced before, and I have to say, I have a whole new level of appreciation and respect for anyone who’s ever gone cold turkey. On top of everything else I was trying to cope with, I now had constant fever-like symptoms and I spent almost a week and a half shaking, dizzy, anxious and nauseous (and in pain!). My parents had no idea what to do either, so we resorted to futilely calling 111. Naturally, it took them hours to respond, they asked ridiculous questions (like “Do you have any anal soreness?”- even after I’d already told them that I’d just had it removed!?) and they toyed around with us endlessly saying that a doctor would come to our house to examine me and then revoking it about 9 hours later in the middle of the night. Eventually, the next day an actual doctor phoned but his “solution” to the problem was to find me MORE tramadol to ease my withdrawal symptoms… I’m sorry but why on earth would I go back on a drug that I’m having trouble stopping only to relive this withdrawal experience ten-fold in a few more weeks?? We tried to get in touch with the doctor who’d prescribed this medicine plan in the first place and he just said this “doesn’t usually happen” but had no solution or advice. Once again, I thought I’d be better off dealing with things myself and waiting for the storm to pass on its own.
Luckily however, this was not the opinion of my local stoma nurse. She came to visit me at home and quite literally salvaged me from the wreckage of the whole situation. She was sorry that apparently everything that could have gone wrong had done, and that no one seemed to be supporting us, not even the district nurses, who’d deemed me “ineligible” for home visits to do my extensive open wound dressings. As a result, I’d had to request a prescription for biatain dressings from my IBD nurse myself and purchase the supplies I needed to dress the wound on my own with a mirror. She was ashamed of the fact that the hospital had let me go home with my wound open and just left me living with it and without a clear plan. She decided to take matters into her own hands and phoned a colleague she knew at the Royal London from my living room and demanded to speak to my surgeon. After some waiting, she finally managed to pin down the elusive man himself! He told me to come back to ESAC the following day to sort something out.
So off I went again, hoping this time for more clarity on the whole Grand Canyon situation. I saw my registrar and she examined the wound. She told me that she would need to call the plastic surgeons and that it was likely that I’d need more surgery. My heart actually sank. But what got me even more was the fact that she’d said that this had happened before with Crohn’s patients. Even though I’d appreciated everything my surgeons had done for me thus far, I couldn’t help but ask myself why nobody had even mentioned to me that there was a possibility that this could happen and that by agreeing to have the pan proctocolectomy, I might also be resigning myself to having further surgery within weeks of the first one- like that hadn’t been enough. After several more hours of waiting, the plastic surgeons arrived and vaguely explained what would probably be done: a deep skin flap procedure that I’d probably be in hospital for another couple of weeks for. NOOOOOOOOO. Could this get any worse!?
They said that they would talk things out with the leading plastic surgeon and get back to me. A few days later I was called back to London to see the plastic’s team specifically and they had a look at everything and explained the procedure. Luckily they were incredibly clear, supportive and informative, so I felt like I was in good hands after being passed from IBD to colorectal surgery to plastics. There were so many teams involved in my care now that I just hoped that they’d all correspond with each other! I found out that the surgery would take a few hours and that I’d be on some pretty hefty pain relief again (great…) but that after the first surgery, this one should seem a lot more manageable in terms of pain and discomfort. They planned to take a leaf-shaped section of flesh from my right butt cheek and rotate it to fill in the “gap”. This would create a “flap” and would eventually appear as a leaf-shaped scar and a long horizontal one on the right-hand side once the flap had settled into place.
The big question I had was about my physical position. They said that I would wake up lying on my left side and that I would have to stay that way without moving for a couple of weeks. Then I would be able to use a toilet carefully, but I would NOT be able to sit down, lay on my back or put any slight pressure on my bum or my right leg/ side. So essentially, for 3 ENTIRE MONTHS MINIMUM I would have to spend my days and nights lying on my left leg alone or standing up. This was definitely one of the most difficult parts of this surgery and recovery for me, particularly with my arthritis- but I’ll get to that in another post. I also wanted some reassurance from the plastics team about the likelihood of this surgery actually working. They told me that the chances were very good and that if all went to plan I wouldn’t have to live with an open wound forever. I held onto that hope. I went home that day expecting it would be a couple of weeks at least before my surgery was scheduled, but we were coming up to December and the Christmas period now, so I was apprehensive about the wait given how bad and large the wound had come to be. Little did I know, I would get a phone call the next day telling me that if I came into hospital the following day, they would try and operate that week. That was easily the quickest I’ve ever got just about anything health-wise! I grabbed it with both hands in the hope that, whatever state I was in, I’d be home for Christmas. So, on Friday 6th December my mum drove me yet again to London and I waited (somewhat unusually- but this was an usual circumstance) on the plastics ward in anticipation of someone coming to get me…
Me and My Crohn's 