Six Years On – Diagnosis

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 I was admitted to hospital; almost three weeks after my first symptoms. A couple of days of IV fluids, I was discharged. But I didn’t feel better. I didn’t feel at my worst, but that would come. 

My first experiences of hospital were not good. I’d never spent a night in hospital before and it was scary. I was alone, unsure of what was happening to me, let alone what would happen to me. I didn’t know what I would be asked to do, what I would have to endure to get a diagnosis, let alone proper management of my disease once it became evident that this was a long term, chronic illness I would battle for the rest of my life.

Six years have passed since those early days, and they were not my darkest days. They have been recently; they happen every year without fail it seems. But I have come through them; even when I think I won’t get through them, I do somehow rally and push myself through to the other side. I don’t always do it with the grace and confidence I would like to exude; at least once during an admission I have a hissy fit – sit in my hospital bed, hooked up to meds and fluids, arms crossed, waiting for my consultant or surgeon to come in and ask me what’s wrong. I’ve never yelled or raised my voice but I have been pretty stubborn. Why? Because its my damn body that I am putting through these tests, these side effects and these treatments. I know how my guts feel; I feel them every day – especially in those days when they hurt beyond comprehension and beyond words.

I’ve learnt so much in six years! I passed into the realms of being a seasoned IBD patient last year after hitting the five year mark and needing to have surgery. Twice!

So what is it I can take away from having been a IBDer for this long?

  1. You learn who is important: family, loyal and trustworthy friends, amazing work colleagues, those who only want to see you well again.
  2. You learn what is important: rest, relaxing, recovering, listening to your body:  your guts most importantly, your heart and your mind. You know what is important to you and how it needs to be done and when!
  3. Fight for your rights as a patient! I’ve spent a long time pushing my consultants to give me answers. To explain to me what is needed of me, what I need to do to get better. I’ve never been one to just do what they say, I need to know why and what we hope the outcome is. Be it a diet or a new treatment plan; I always like to know the end goal. This way, I am able to assess if this is suitable for me, once we get going.
  4. I always speak honestly and openly to my medical team about my issues. This has been fundamental when in hospital for an admission. I’ve found being direct and not being embarrassed has helped cut my time spent being a) actually in hospital and b) frustrated by the lack of ‘doing’ down a lot.
  5. You get over being embarrassed about talking about your butt, your bowels and your insides quite quickly. This goes hand in hand with the above. I know that this can be difficult for some people in the beginning but once you embrace how freeing and much simpler things can be with your medical team once you talk about your shit, the relationship gets so much better.
  6. If you are unhappy with your experience in hospital, take it up with someone. Talk to the ward sister, your specialist nurse, your consultant, or even PALS to get advice. You have a long term, chronic illness. You will likely have to experience hospital on numerous occasions. Receiving good care is part of this. Fight for it if you haven’t had it. It adds so much to the experience you have with your IBD and how you see life when you need to be admitted.
  7. Don’t be afraid to be persistent. I am on very good terms with my IBD nurse and Stoma nurse. I think this is down to me not only talking honestly with them – something they respect and they can see over time when my bad times come along – but because I always ask them things; via a phone call or more often now, via email. They are my first ports of call in any IBD or stoma storm. They always help as best as they can but they respect that I am patient who looks into their care. And my motto is “If you don’t ask, you don’t get” – Don’t be afraid of the medical professionals! They are there to help you!
  8. Bad times will happen. Hopefully they don’t happen too often but when they do, be prepared. When I was in a bad cycle of admissions, I ironically had a hospital bag packed pretty much all the time for a three month period. It had my essential hospital items – headphones, music, extra charger, underwear, pjs, facial wipes, spray and sweets – so we just had to pick it up and go to the hospital if in an emergency. This cut stress levels down quite abit and it was a running joke at home of how long that bag would sit without being used. After ostomy surgery, we went almost three months without it.
  9. It is okay to feel sad that things are going wrong. Being scared is natural and so is being fearful of what could happen in the future. But there is always a silver lining. It can take a while to see it but there is always one. It might not be what you expect and you have to alter your aspirations and your plans, but things going wrong isn’t the end of the world. It just means you have to dig abit deeper, find some fight and get back to being strong. Crying and feeling frustrated is normal too. I’d be lying if I said I’d never cried in front of my medical team or my family or even just in the bathroom, when I could be alone. Giving myself a pep talk in those moments; they can be tough ones. But those pep talks have allowed me to come back stronger.
  10. Share. Keeping things bottled up is hard. You might not want to be the person who ‘always talks about their illness’ but being chronically ill is what is happening to you and keeping it all inside will drive you slowly insane. Learning how much to say and when is important and that took me along time to master. Ultimately, this blog has helped me get rid of most of my feelings and documenting my life with Crohn’s helps a great deal. Finding motivation to share has been my struggling point this year due to so much happening elsewhere in my life. And striking a balance between my sick days and sharing the positive message of having a stoma has been challenging. But, I want what I write to be honest and real.

I’m sure I’ve learnt more than these big lessons…!

  1. You get used to being stuck with needles.
  2. You get used to cannulas and lying in hospital in incredibly awkward places to keep your lines flowing.
  3. You know which veins are great at getting blood and those used for fluids.
  4. You can already tell what the new doctors want to do: You are the seasoned patient compared to them!
  5. You learn techniques on how to sleep in hospital – I use sleep spray, an extra pillow and always listen to music!
  6. You find ways to get prep for scans down without any problems
  7. You always take the sedation for procedures!
  8. You never refuse IV morphine!
  9. You laugh when doctors realise how long you’ve had this disease and how well you’ve coped
  10. You don’t get phased by being physically sick.
  11. You do not mind walking around the ward with your stoma bag out of my pjs; its just more comfortable!
  12. Medical students will always come and ask you lots of questions about your disease!
  13. Nurses love you for knowing the system and not bugging them.
  14. You find some relaxation in being in hospital –  this might just be me though..!
  15. Changing a stoma bag becomes second nature and you get used to it shitting all over you.
  16. Being nil by mouth becomes a regular occurrence.
  17. You admire a doctor who can get a pink or even green cannula in you first attempt!
  18. Describing your poop is just normal now.
  19. You know the shortcuts to departments throughout the hospital.
  20. You can remember names of those who work on the ward.

***

Living with IBD doesn’t mean that your life is any less than anyone else. Being sick is just something that happens to us more than any others. It isn’t always a easy or fun time but finding the funny moments or not taking it all so seriously and negativity does help. Poop jokes, finding the silly, medically weird and geeky moments have helped me accept what my life is now. It might sometimes revolve around the hospital and seeing medical professionals but I feel weirdly safe in their care. I’ve spent six years building up a strong relationship with them; based on my own desire to do the best for me in the best proactive way I can. This year I have relocated and that means moving my IBD care to a new hospital in a new area with new medical professionals. Building a new relationship is what awaits me when I return to work in a couple weeks and already, I have great faith that I will get to the same level of trust with these new professionals. I come into their care with six years experience of IBD and what is it like to have that disease ravaging inside of me. I hope they take me as I am, without prejudice.

August 2017

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, […]

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Happy Stomaversary!

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 […]

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June 2017

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 […]

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May 2017

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 […]

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Happy Surgery-iversary…?

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 […]

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April 2017

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 […]

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The 29th Year

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. […]

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March 2017

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 […]

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February 2017

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. […]

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January 2017

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 […]

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One Year On

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 […]

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Remission: I AM IN IT

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 […]

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December 2016

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 […]

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2016

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. […]

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2017 Goals

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 […]

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November 2016

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 […]

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October 2016

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 […]

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To new beginnings…

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 […]

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April 2016

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 […]

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