“Time moves slowly but passes quickly.”
That can be said for my recovery from surgery. I can’t quite believe its been a month already but in the same thought I can believe it. I’ve been experiencing recovery in real time and taken each day as it comes. It hasn’t been easy – but I knew it wouldn’t be – but its been better than my last experience of recovering from surgery.
- Not needing any pain relief since being discharge.
- Being able to manage my stoma – when its changed size and the output has changed consistency. Even the frustration when leaks have happened.
- Made it to a family celebration.
- Not panicking when my scar opened up and serous fluid leaked out, not once but twice. Antibiotics needed, on my second round after the first lot wasn’t strong enough.
- Taking all of my doses of steroids without fail.
- Managing to do some shopping.
I haven’t had many negative days when I’ve hated my situation and wanted to go back to being “normal”. If I am honest, I was expecting to spent time once I got home, struggling to cope with my bag and what it meant. But I’ve been able to occupy myself with going out to places with the boyfriend and spending time with him, that I’ve not really thought of the enormity of what’s happened. I’ve had a few wobbles; when I’ve hated my stoma and the fact that I can’t go back to having my colon but when I think about my diseased colon causing me all that pain since June, I know the right decision was made. I just have to make more peace with it.
My belly has changed in the weeks I’ve been home. My scar has healed and the scabs have come away, leaving me with a pink line up my tummy, around my belly button. Its neat but the weight I needed to put on has gone straight to my middle, resulting in my scar dipping so I have a ‘front butt’. Next to my bag it doesn’t look too bad… but I know I will need to exercise once I’ve been cleared by my surgical team.
Managing my diet is by far the most complicated part of having an ileostomy. Balancing my fluids, salts and sugars, along side my actual intake of good nutritional food is challenging. Some days I am good and others could be better. Keeping hydrated is by far the hardest part of this for me. I don’t want to become dehydrated because it just messes with the whole system. I can’t now ever neglect to look after and care for myself. So as much as I want to forget about my chronic illness and its impact on my life, I need to be conscious about maintaining being well. I’ve never had that before: 1) being able to ‘forget’ about being sick and 2) making sure I stay well. I’ve never felt this well in all the years I’ve been diagnosed with Crohn’s disease. So it feels very foreign; I keep expecting it to end and I become sick again. The closest I get to that is when I become fatigued, maybe once a week. It’s all so new and every day I wake up feeling an improvement on the previous day… that’s never happened before. And its not the outcome of a medication – like Humira, when I would need to take it every two weeks and the last couple days before the injection I would really struggle – which is still amazing. I mentally pinch myself to make sure its not a dream.
I’m still getting used to everything – being colon free and what that means, the mental and physical impact of my ileostomy, how my body has changed and the responsibility of caring for myself – but I’m doing okay. I’m still taking each day as it comes and trying not to see or plan too far into the future; at least until I’ve seen my surgeon again next month.
Tuesday 23rd August (cont’d) “I’ve got a space for you on the end of the emergency list today, could be this afternoon, probably this evening though.” Ward round this morning and surgeon is keen to remove my colon today. Despite being busy, he will stay and do my surgery when his list is complete. Turned out that meant waiting all day – still experiencing more blood than I’ve ever known to come out of me – until the anaesthetist came to see me at 6pm. We talked through my procedure – a subtotal colectomy with ileostomy – and my options […]
Thursday, August 11th “I feel absolutely awful. If I’m honest, I’ve felt awful for weeks and I’m at the end of my tether. Please help me.” I was on the phone to my IBD nurse, begging for help. I’ve never begging for an admission but that is what came out of my mouth next; “I’d really like to be admitted.” She wasn’t shocked, just said she’d need to speak to my consultant and surgeon to find a bed for me on the Gastro ward – always going to be a big ask but I knew she’d come through for me […]
I last wrote anything about my Crohn’s disease back at the end of June. That is almost six weeks ago but feels so much longer ago. And in retrospect, so much but so little has happened. It’s just been one thing after another; without the last problem really going away. So I was being discharged in my last post after my bowel infection from surgery. That problem resolved itself a week after I came home because of the antibiotics my surgeon prescribed to knock it out of my system. It seemed to do the trick; I was eating more, managing […]
I was never given any real information on how to recover from surgery. Sure, I got details on what had happened to my body, what I was now missing and how to best adapt going forward but I never expected ‘complications’; even though they were there, in black and white, at the end of the procedure paperwork, to happen to me. Complications included: Chest infection. Illeus (temporary stoppage in bowels). Damage to the bowel. Ureter damage. Internal haemorrhaging. Bowel obstruction. Stricture. Anastomotic leak. Wound infection. Urinary Tract Infection (UTI). Deep Vein Thrombosis (DVT). Pulmonary Embolism (PE). All of which were most likely to occur soon after surgery, their chances diminishing the further […]
The weekend after surgery saw the most activity. This would be the removal of my catheter, getting out of bed for the first time and finally being able to eat. Having not been awake for the insertion of the catheter, the removal was pretty painless. It was more uncomfortable than anything and it did mean I would now have to get up and find the female toilet at some point; with a PCA pump and a bag of IV fluids. It’s quite amazing how much the catheter was doing for me because it wasn’t long before I needed the loo […]
So last time, I had just had my pre op assessment for my surgery. I’ll admit, that appointment was extremely helpful – it calmed me more than I had expected and I finally felt relaxed for my operation and I knew I had made the right decision. On the morning of my surgery – Thursday – I packed my overnight bag with some pyjamas, face wipes, my phone charger, kindle and dressing gown. I was told I was being admitted via the Day Surgery Unit at the hospital at 1pm. My dad had kindly taken the day off, so we […]
Seven more days of having all my insides, still inside of me. Seven more days of this constant, terribly draining pain. Seven more days in this current chapter of my IBD life. I know surgery isn’t a magic or quick fix. I know I will be in pain afterwards, a different pain from the one I’m experiencing right now but I am hoping this will be controlled better and not be constant once I’m off painkillers. I know its a big deal for my body to be put through; the worst its been through is a flare up four years […]
Feeling nervous about tomorrow’s appointment at the surgical clinic. Want to have it all booked and sorted so I know what I’m working towards this Summer but really dreaded it finally being in black and white. *** I know this is the best option right now. In fact, it’s sort of my only option right now. I’ve failed everything else, and even though the combination of biological drugs have made my colon better in the past twelve months, my terminal ileum is a mess. And it needs to come out so I can move forward; in so many ways! With […]
March, boy have you been dreary. I’ve had the delightful experience of my colonoscopy this month and its outcomes have yet to be discussed with me between my two doctors – my consultant and the surgeon. That is happening in the next couple of weeks before I go away on holiday for my birthday with the boyfriend. I’m hoping for some clarification on what is going to be happening and when. My scope did show a almost 100% clear colon with only really bad disease located in the terminal ileum and small bowel – which was expected to a degree […]
The information below is taking from the patient packet received with my appointment letter. Please contact your own hospital for information on this procedure, if you are requested one, as information can vary between NHS Trusts. What is a colonoscopy? A colonoscopy is a technique to look directly at the lining of the large bowel (colon) to try and find out what is causing your problems. A colonoscope is a thin, flexible tube with a bright light on the end. This tube is passes through the back passage and into your bowel. It allows samples of tissue (a biospy) or […]
The fun of a scope is in the preparation. Said no one, ever. My scope is scheduled for a Tuesday morning (thank goodness for morning appointments!) but my preparation of my bowel starts the Saturday before; three days prior. On this day I start my low residue diet. Anyone with IBD will tell you they follow a low residue diet – a diet consisting on very little fibre, because that causes aggravation of the bowel wall, among other things – most of the time. Being on a low fibre diet for this amount of time is key because in order […]
I feel rotten today. I spent Tuesday afternoon onwards at my boyfriends house. I don’t spend alot of time there because of recent problems I’ve had with my Crohn’s, its easier to be at home. But we had a night and a day off together so decided to spend it together. And even though we have been together for almost 4 years now, I still don’t feel comfortable enough to just get up and walk to the loo and be gone, for sometimes ages; whenever he lives. Even when my Crohn’s is going through a good patch; which now definitely […]
February, boy has it been a turbulent one, on the health front. For the past couple of bleary months, I’d been expecting my treatment plan to fail. I was looking at a last chance saloon with Vedolizumab as soon as I started it way back in October, but to have it official fail on February 5th was abit of a shock. It meant I had to kick my butt into gear and get something else sorted. Which had to be something I had yet to try, something outside the realms of conventional medical therapy. I should have known it would […]
So today is my pre assessment for my colonoscopy which is taking place on March 8th. What is a pre assessment appointment? “Patients attending for a Colonoscopy procedure are seen by a pre assessment nurse prior to the date of their procedure. At this appointment the pre assessment nurse takes information from you and advises you how to prepare for the procedure. He / she will also give you the bowel cleansing medication and discuss your consent. At this appointment you are able to ask questions concerning the procedure, your medication and so fort. Failure to attend this appointment may mean […]
I’ve been due to see my consultant since December. The plan was to have a chat about what appointments I’ve had since we last saw each other, how I was feeling after finishing up Vedo – it was imminent to failure at the end of 2015 – and plan what we would do next. The latter of these three things has filled my mind with questions and full of confusion. I was unsure of what would come from my surgical option, what would come from seeing another Gastroenterologist at a bigger and more research led hospital and what would really […]
With each step of my disease, I’ve become more and more like a squirrel. I’ve become the hoarder of information. Gathering all the relevant nuggets of advice I can in order to make the best and well informed decision I can. This is no truer that it is right now. I’m having to decide between enrolling on a clinic trial and having a surgery to help aid my Crohn’s disease. I’ve looked into both before, not so long ago, before I realistically started Vedolizumab; so probably last summer. I thought, of the two choices, I would happily take more drugs over having […]
.. I was experiencing my first really serious bout of “on-medication-but-feeling-as-if-I’m-going-without”. I had just completed my first year of Infliximab and I’d made it through Christmas. Boyfriend and I had plans to get away for the February break and picked Cornwall for a week’s holiday. I would have my infusion at the start of Feb and that would usually keep me going for at least a month. Oh how foolish I feel now. February 2015 was horrible. I would still have my Infliximab but I had lost total response to it; I wouldn’t be tested and know this for sure until […]
Despite my best efforts, it seems my current run of Vedolizumab is over. This is what happened at the turn of 2015 into 2016: “I’ve finished my loading doses of my Vedo! That happened two weeks ago and was eventful as always – six attempts at cannulation; two of which were blown veins whose bruised still haven’t faded yet – and I spent 10 days post infusion with pain and severe aching muscles. Neither of which have completely gone and neither of which my consultant can fix, it seems. So I await the New Year and with it bring an […]
I started 2016 in pain, surprise surprise! I slept through all the new year celebrations, awaking groggily in the morning, trying to find some strength. Why would I need to find strength knowing it was a Bank Holiday weekend, I hear you ask? Well, I’d received a letter the day before; a consultation with a new doctor at my hospital, a surgeon I found out once I’d Googled him (something I don’t like doing but curiosity was killing me) and I was going into over drive as to why and boggled by the short notice. Was something wrong? Was I […]