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 […]
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, […]
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 […]
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 […]
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 […]
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 […]
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 […]
April has been busy. I’ve been to three big appointments to determine what’s going to happen with my treatment. Its been decided that surgery is going ahead. That happened the day the boyfriend and I went on holiday to Cornwall in the middle of April. A week away from the stress of life and being able to just sit on the beach and be relaxed really helped. If I could do it every month, I would. Thus, started the dreams of living closer to the coast once I’m back to feeling better and hopefully on the road to remission. I […]
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 […]
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 […]
The beginning of the year is always difficult. I have, for the years I’ve been diagnosed with Crohn’s Disease, been able to avoid any major problems at the festive period; even when I was first diagnosed and just having started Humira without a clue how amazing it would be. So I came into January unsure; of what this whole year would bring me, how quickly I would find a new treatment plan and how rubbish I would have to feel to get to that point. On NYE I got my appointment to see a surgeon to discuss – very briefly […]
This month, alot like the others, has flown past. It’s now July, the seventh month of the year.. and I can’t quite believe it. It’s been a busy month. Been at work almost all month without incident or pain. One day caused me to leave work early, but par that, I’ve been symptom free again this month, just a little bloating and uncomfortable moments, but they soon pass. I visited the Day Hospital at Good Hope on the 12th and received my first Iron Infusion, which went well. It took almost two weeks to kick in and give me the […]
Considering how much I fear May in last months post, it wasn’t as scary as I once thought. I have been symptom free from my Crohn’s all of May. I’ve taken no time off work for any problems related to my Crohn’s, excepted my already allotted days for hospital appointments. I visited Good Hope twice in May. The first on the 15th for my clinic appointment. Found out I need an iron infusion to help remedy my anemia and that I need a full colonoscopy this summer. Looking forward to that one..! My second visit was a week later on […]
I ended last months post looking scarily forward to April. It did not disappoint. This month only had two days when I was ill – April 27 and 28. A mini flare up on my days off from work (bloody typical) lots of gut ache, no probable cause to it and it settled down in a 36 hr period. PHEW. Started my counselling at the practice. Was, well is, challenging. Its very easy for me to talk but its not so easy for me to be brutely honest about everything. It is slightly frustrating, because it feels like a catch […]
Prelude: I thought the best way to ‘track’ Crohns and related / subsequent issues, besides my medication diary, is to write a monthly post about how *this* month has been. Yes, I juggle alot of balls in the air. So, let’s begin.. I ended February with discovering I was in desperate need of counselling for my Crohns and related problems, be them medical, anxieties or just emotional and mental health. I actually ended up crying on the decorating floor at work, not understanding what was happening to me. I had to admit (with the help of many of my IBD […]