Well, October was unexpectedly manic, health wise.
I always go into a new month hoping for the best. Hope that this is the month that things get settled down and I start to feel better, day on day. And for the most part, that has been the case with my IBD and my ostomy. The taking of the steroids and having the Vedolizumab back in my life has helped a great deal to calm the internal storm that was raging in my bowels. Gone was the pain, gone was the cramping and the discomfort and the utter disbelief that this was happening and was taking forever to be fixed or managed.
But October was far from easy.
I returned to work. This was my first step at normal and whilst we started off slowly and I felt overwhelmed by being back; being back made me very happy. Finally some normality was coming back to my life and I felt good. I started to feel good too. But then I had my implant removed and along came a cold and then a small but chuffing painful blockage. I coped; I got on with take cold meds and my steroids. I hoped that it would fade by the time I was due for Vedolizumab and it did! But, what came along after was much worse. An abscess. I have had them before but never where this one sprung up: on my face. On the side of my nose, very close to my eye. I woke up one morning unable to open my eye, it was swollen and angry. One doctors appointment later, antibiotics. Those antibiotics would change three times and last three weeks. The abscess cancelled my Vedo infusion and was moved back ten days. My abscess needed draining not once but twice in five days. It slowly went down with the antibiotics and I finally received my Vedolizumab. Since then, it’s faded nicely, and I feel more human. I don’t feel like anyone is staring at my face anymore!
That abscess brought out alot of things. It made me realise how fragile my mental health is and how I need to get some help. I need help with learning to cope with this. And by this, I mean my illness, how I process it, how I choose to express it and how I accept it. Yes, even six years in, I’m still accepting the changing face of my IBD. I know my stoma saved my life but it also changed it, and sometimes I hate that. I hate all of it, and I need some help with dealing with that. I’ve tried alone but now I need someone. Someone outside of my life to set me on a path towards feeling better, feeling good, feeling like me again. Or even, finding me. Whatever it is, a new emotional path is needed.
I go into November with the eternal hope of this one will be better than last. I hope for good days and I hope for positive outcomes. I hope for some clarity too. Instead of feeling like I’m emotional treading mud, alone.
September was an improvement on August, for sure. I did spent the first week of the month in hospital, getting my flare up under control, addressing my obstruction and getting my medication sorted. I received my first dose of the third restart of my biological treatment – Vedolizumab – as an inpatient and that was the beginning of this new chapter. Going forward, I’ve been able to control my pain better with some stronger painkillers, found some more appetite with my steroids and I’ve been able to fight. I’ve got so many new appointments lined up with my new hospital […]
It was a desperately horrible August, 2011. I’d never suffered with health problems, but this current run of feeling unwell just wasn’t going away. If anything, every day, it got worse. So much that weeks had passed and I just could not remember the last time I had eaten a meal, the last time I’d had a solid BM and the last time I hadn’t been sick. I was a mess. Nothing at this point, pointed any medical professional towards my eventual diagnosis with IBD; it was first described as a stomach bug. Then the stomach flu. Finally Gastroenteritis and […]
Boy oh boy, August, you have been hellish. I had planned on having some annual leave and spending some time back home in the Midlands, but my body had other ideas. It started in Mid-July as just some uncomfortable abdominal pan after eating so I didn’t think it was too serious; I altered my diet and drank more fluids, took it easier. But it did not let up, not at all. I had to seek some medical attention: which was hard when youre in the middle of transferring your IBD care from one hospital to another. I had several admissions, […]
What I’ve Achieved in Twelve Months with my Ostomy Well, me and Priscilla have been belly buddies for a whole year today. It feels like such a long time but it also feels like nothing, like I’ve clicked my fingers and here we are. But what have I done in these twelve months since that fateful day of ostomy surgery? I survived another surgery! That would make two in three months. My hospital stay would come in at a total of 22 days. Most of my days were good but these were all post op. I changed my […]
June. What an exciting month! The good work of last month continues: the work is going well and I’m working hard despite my teething problems and struggles. Living alone is challenging but I am enjoying finding out what I can do and how I feel about myself, on my own. I’ve receive some great and wonderful advice about working and my life with an ostomy: Just let it happen. It seems like something so simple but it is definitely hard for me to do, and this month has been no exception. I’ve fought off two bouts of dehydration and one […]
May. Well, it’s only gone and flown by. I moved for my job at the start on the month. That was a stressful and emotional upheaval of many things but considering how weepy I did get when I left for university and then when I moved to Canada, this was good. It felt good because I knew I was coming somewhere to put down roots. I was excited and anticipating great things to happen here. It has been a good month of learning so many new things for job role, navigating a new city, exploring my own limits and strengths […]
May 12th. It is forever etched into my brain. We’d been able to control, for the most part, my disease with medications and ‘diet’ for the five years prior to that. But, somewhat inevitably, it came down to needing a clinical trial or surgery. I opted for surgery but debated the toss for weeks after choosing. I was going to need testing to predict the type of operation I would need and I still went back and forth throughout all that testing. But once we had a plan, I was keen to move forward. The pain, the nausea, the inability […]
Yet again, the month has flown past. There has been lots of change this month. I’ve spent a significant amount of time finding a place to rent in my new city for my new job and getting myself organised and sorted for the end of April. I’ve had all of the month to get packed and my head around the fact I am going back to work. If it hasn’t been for this particular job I am going to do, I would not have moved. But some of the allure of my job, is the fact that I have to […]
I’ve eaten a lot of cake this weekend. And it was birthday cake too! And I’m sure it’s not the sugar high I’m on, but this has been one hell of a year. Despite being very aware of the fact that this is the last year of my twenties, I want to celebrate all the good – and the bad – things that have happened whilst I was twenty-eight. Hopefully, this is all in chronological order! Quick prelude: My Vedolizumab cycle had failed. I met my kick ass, adorable as hell surgeon. He advised a resection would be the best way to go forward. […]
Where has March gone? This month I’d been focusing on getting my butt into gear and into a some what work routine. I tried lots of different things to help me settle into a comfortable routine and pattern, whilst I still have the flexibility and freedom to do so. That has been going well, and of course it can’t be truly settled and sorted until I actually go back into employment. On that front, I have got a new job and I am moving away from home to do it. That is as much as I want to really say […]
February was a busy one. It started and ended with my Nan. She passed away on the last day of January and we’ve only just been able to have the funeral. It wasn’t a sudden death, she had been ill for a long time but still, even that doesn’t cushion the blow of my dad loosing his mom. It’s taken a toll on everyone, but my dad has been able to hold it together until he spoke at the funeral. It was heart-breaking to watch and it still gets me choked up. Despite that, she had a lovely send off. […]
This month I’ve been quietly dealing with my own version of the January blues. I don’t tend to get depressed too much this time of year, especially when I’ve been feeling so well. But I think it’s somewhat due to the fact that I’ve been feeling so well that I feel sad. Which is twisted and I’ve been struggling how to process it and whether or not I should be talking about it. Should this blog be positive things only, helping others to get through surgeries and how to live with a chronic illness? Would I be doing myself and […]
Three hundred and sixth five days. A whole year; twelve months. We sat in traffic. It was a busy Wednesday morning rush hour. I’m anxious, excited and ever so scared. It felt like make or break time; would these doctors also recommend surgery? Did I have more choices than the scalpel? I was in agony. I knew I was sick and I knew that I would probably choose surgery but who wants to make that decision? Without more opinions and more information? No, today was necessary. I was curious about the new and different hospital; explaining my history to a […]
So, this week is proving to be quite good. And I want to share my good news, because lets face it, sometimes it happens so infrequently, I just get too excited. Today I’ve had the results of my MRI scan from last week come back, in the form of my IBD nurse calling me to cancel and rebook some appointments with me. I enquired to what was open on the system for me yesterday via email so when she called me, I was abit confused. But its good news! After just five months since my ostomy surgery (and four months of […]
Of course, this month has been all about preparing for Christmas. It’s been quite stressful but I think I’ve coped quite well. And it’s only now that I am getting a bug or something; output has gone absolutely crazy and I feel run down and awful. Hoping it passes quickly but I know that I will need to attend A&E if it does not improve within 24 – 48 hours. That being said, I have been able to attend the hospital for all my appointments and have avoided any problems. I haven’t had to have any Vedolizumab this month as […]
To say it’s been a challenge this year, is abit of an understatement. I went into 2016 knowing I would be having surgery and thing would be unstable for a while. The build up to surgery was agonising but I knew it would improve my future prospects of getting along with my illness – it could become easier to treat, more manageable, I would be in better health and I would respond better to whatever life threw at me. I also went into 2016 with these goals in mind: I don’t feel like I’ve achieved them or failed at them. […]
In 2016 I made a conscious effort to set myself realistic goals and hoped to hell that I could achieve them. I found that keeping goals helped me focus on something, especially when things got shitty and problematic. So I’ve set myself some specific health ordinated goals. These are things I wanted to achieve once I had recovered from my op in August and are focused around building myself and my life around my ostomy. Yes, it is that fundamental to who I am. But I wanted to also find things to work on, away from my health. These goals are: Be better […]
November has been dominated with writing and writing and then some more writing! I’ve spent my month improving the blog and its content, as well as refreshing older posts with a new format. Its been a long process and is still ongoing until the end of the year when I can finally finish editing and get on with my 2017 plan for blogging. This month as well as writing its been dominated with Ben finishing his previous job and now moving onto this new job, which takes he away from home for the weekdays until Spring next year. It’s been […]
October seemed to be abit up and down, in many different ways. At the end of September I was dealing with a quite persistant bout of peristomal skin rash. I was seeing my stoma nurse every week at her clinic to make sure I had been looking ater my skin, managing my new bag and routine, whilst also sorting me out with enough supplies to get me through any problems in the next seven days or so. It took quite a while to go away; my stoma changed size again, I gained much needed weight and I wasn’t using the correct […]