An open letter to my friends & family

 Hi everyone,

So as you know I had big surgery in January 2016. The wound hasn’t healed, and next week I’m going to see a plastic surgeon about it.

I’ve had over 200 dressings applied, which started in May. Most of the time that has been 7 days a week. It has been very disruptive to my life, to our lives as a family. Catching up with missed work. Being tired from growing a new buttock. 2 further hospital admissions.

And that has meant plans have been cancelled. Sometimes rearranged. Or not made at all. And as it has gone on longer and longer, fewer and fewer plans got made. 

And I’ve tried to be upbeat – no, it doesn’t hurt, yes it’s still going on, ha ha, growing a new bum cheek – but it’s getting harder. Hopefully next week will give me a time frame for getting it sorted.

And so this is an apology for plans cancelled or not made at all, birthday cards that came late, phone calls not made.

And I’m not ready to promise, but there is a hope that it will all be over soon. Then plans can be made, games played, meats BBQd and drinks drunk.

So, please bear with me, it has been a bit limbo-Esque, and there is much I want to do once I no longer have a hole in my bottom.

 

 

 

What to write?

Sometimes I really struggle with what to write about in my blog. As the main focus is about my inflammatory bowel disease and subsequent surgeries, sometimes there are periods when not much is happening, which don’t make for great reading.

Right now for instance, I am still having the wound from my surgery 12 months ago packed daily. I am waiting to see a plastic surgeon to see if anything can be done about that wound. And there is an infection in it so I am taking antibitoics. Other than that, health wise I am OK (I have a bit of a cold but it’s not too bad – I had my flu jab).

My blog has always ben about my journey, so when nothing is happening, it makes the updates harder to do. As such, I don’t have a huge following, and most of my readers are friends who read it via facebook. Of course, if I don’t post regular updates, then I won’t get more readers… so it is a problem.

The other issue is that I am pretty busy. I work full time, and by the time I have come home and got either dinner ready or the toddler to bed, I’m not at my most creative. I have a few ideas, but never seem to have the energy to develop them. It’s hard to know if this lack of energy is IBD related – fatigue is a huge issue – or if it is my body trying to grow a new buttock, or if it is just life in general.

However, it is helpful to me. So I shall continue to try. I’d like to get into video posts (vlogs) but need to get myself an iPhone adaptor for my tripod. And maybe some lights…

What I have discovered recently is there are some great IBD blogs out there, from a range of people at a range of stages in there journey. I’ll put a list together. Maybe reading more of them will help me find my voice…

 

My IBD Story Part 2 – #IBDAwarenessWeek

This is part two of my IBD Story. In part one, I ended up in hospital, and left with a stoma…

It took a little while to get back to any kind of normal. I was self-employed at the time, and had to claim income support as I was unable to work. I still don’t understand how anyone could falsely claim benefits, it was a pretty mammoth task to make a claim.

Having been discharged in September, I managed to get myself a new job in December leaving my temping and other bits and bobs to become an arts youth worker. I returned to fencing training, gained weight and was pretty healthy. I managed the bag OK – a few leaks but nothing major.

I had a number of meetings with a colorectal surgeon to discuss the possibility of an ileo-anal pouch, a kind of reversal which would rework my internal plumbing, eventually removing the stoma and letting me poo sitting on the toilet again. You can read more about pouches here. And so in August 2006 I was admitted for the pouch formation surgery. Another big slice down the middle. Recovery was OK, although the new stoma – a loop ileostomy – was very flush to the skin and much more difficult to manage. I returned to work in November, but only managed a day – I was plagued with pain in my bottom. I needed stronger and stronger pain killers. Examinations were inconclusive. I sometimes had to get up in the middle of the night to have a bath.

On the 2nd January 2007 I woke up in the middle of the night to go to the toilet. I couldn’t get myself out of bed, my legs just didn’t seem to want to move. I assumed I was just really tired and went back to sleep. That morning, I could still not move my legs – my knees had swollen up. After much wrangling a GP visited me at home and prescribed (eventually) an anti-inflammatory. I saw my consultant again, and he sent me for a second opinion.

Enter The Professor

I went to see Professor Nicholls, who had worked alongside Alan Parkes to develop the pouch technique. At this time I was a private patient, and the consultation at The London Clinic was like entering a different world. I was booked in for an EUA – an Examination Under Anaesthetic. This revealed that the rectal cuff had completely denuded of lining. When my colon was removed, a rectal stump was left (which would allow the internal pouch to be connected). It was this tissue that was affected. The solution would be to remove as much of that tissue as possible, and then hand stitch the pouch just above the anus – this was how the operation was originally done, before the advent of the surgical stapler which leaves more of the rectum intact, but reduces time under anaesthetic. I was booked in for surgery in February.

Another laperotomy. Still a difficult stoma to manage. More MRSA. However, the pain was much reduced. Eventually, I returned to work, having just a short break in June to have my stoma closed and my pouch activated. Following that minor procedure, whilst walking around the hospital to try and get my guts going again, I produced a 10 second fart. It was a proud moment.

So, it had been a tough couple of years. However, I had my pouch, so things should get better, right?

My IBD Story -Part One #CrohnsandColitisAwareness Week

So as it’s Crohn’s & Colitis Awareness week, and I decided it is as good a time as any to recap my own IBD story. I’m going to start writing, it might get split over a few posts, but here goes…

Diagnosis

In early 2005, I noticed some blood in the bowl when I went to the toilet. Not a lot, but a bit. I’d been diagnosed with IBS (Irritable Bowel Syndrome) the year before, but didn’t have any of those symptoms. I thought it was probably haemorrhoids and got some over the counter cream, but when 3 months later it hadn’t stopped, I went to the GP. They did some tests, blood and stool I think, and I was referred for a colonoscopy – a camera up the bum.

Aside from the preparation for that being fairly horrific (top tip, if you ever have it, take the day off work) the camera test was OK, I was sent away and a week or so later went back to the GP and was told I had ulcerative colitis and was given some suppositories. I don’t remember seeing a hospital consultant, or being given any information – if I was I certainly didn’t properly take it in or appreciate what it meant to have this chronic condition.This was now May.

First Flare

In August, I was working supporting young people on a residential. I wasn’t getting much sleep because they did like to stay up late trying to start relationships and smoke out of the windows, the young scamps. I was getting some horrible crampy pains, but the IBS medication was helping. On the Friday I went to the GP and was given some steroid foam enemas. Off I went.

That Saturday I supported a group of young people to go to York. I remember on my lunch break gulping down a Burger King and then spending a long time in their toilet with cramping and diarrhoea. I don’t remember the Sunday (I probably slept a lot) but on the Monday morning I was fit for nothing. My mother took me to the GP who looked at me (looked, not examined) and wrote a letter to get me admitted to the local hospital.

More drugs!

So in the hospital they upped the steroid and gave them to me IV, as well as pain relief. They didn’t work. On the worse day I went to the toilet 13 times in the day, as well as over night. I was losing weight, my belly was distended. As a last gasp they tried Cyclosporine which is used as an anti-rejection drug after transplant (it’s a strong immunosuppressant).

That didn’t work either. The surgeon came around one Sunday, my belly was measured and was still swollen. I was told I was at risk of developing toxic mega-colon and by bowel perforating, and I was put on the surgical list. I was visited by a stoma nurse, a cross was put on my abdomen and I was wheeled down to theatre. I’d been in the hospital about 3 weeks at this point. I asked for a shark bite finish.

Recovery – Part 1

I woke up in the surgical recovery unit – just below intensive care. I had a nurse by my bed pretty much 24 hours a day. I had a drain, maybe two, a catheter, a naso-gastric tube, an epidural (I think). Oh, and a big long scar right down my front closed with staples. And a stoma, a little red thing poking out of me into a clear plastic bag.

Despite all this, I felt better. I’d had a metre and a half of diseased organ removed from my body. After a few days I was moved back to the ward, and things were going OK. I had lost a lot of weight by this point so was being fed through a drip (TPN) as I wasn’t yet able to tolerate food, and had just started having water again. unfortunately I developed septicaemia from the TPN needle and there was a probable kink in my bowel. In a matter of hours I went from OK to very sick, and was taken back to theatre, re-opened up and then stapled back together again. Cue another stay in surgical recovery.

Recovery – Part 2

I was moved back to the ward again, and a few days later a doctor came around and drew the curtain around my bed. He told me I had MRSA – detected when I was swabbed post op the second time. I knew very little about it and thought I might die – but it is treatable with really string, vein burning antibitoics. So I had those, and a nasal cream and a special body wash. I had to be barrier nursed, and all my visitors had to don aprons and gloves to come and see me too.

The MRSA was contained, I started eating and drinking again. By the time I left the hospital after 7 weeks I was 3 stone lighter than when I went in – I must have been lighter again at some point during my stay. I don’t have many photos from that time, but I attended my Gold Duke of Edinburgh Award presentation a few months after being discharged, and as you can I see I still look a bit thin.

D of E Presentation

And so I was off into the big wide world to learn to live with a stoma.

IBD Awareness Week 2016

So today is the start of Crohn’s & Colitis Awarenss Week 2016, running from 1st – 7th December.

To start us off, here is some key information from UK charity Crohn’s & Colitis UK.

If you’d like to make a donation, you can text CCAW22 £3 (or any amount) to 70070 or donate online.

I’ll be sharing some stuff this week, if there is anything you’d like to know, get in touch!

So about these #HAWMC blogs…

You may have noticed that they stopped appearing. I made a good start and them written and scheduled to publish for about the first 5 days. Then I did a couple on the day. Then I got behind. Then I had to plan #IBDHour (which went really well, and you can the Storify here) and now I am in hospital again…

So as you know since my operation in January I’ve been having loads of issues getting the wound where my rectum was to heal. I was readmitted in July for VAC therapy, have had magic gels, packing, repeated infections and antibiotics. Last Monday following the latest course of antibiotics, we began another negative pressure therapy called PICO which is a tiny little pump. 


Whether or not it was linked to that or not, by Wednesday I was reporting some pain and a small hole had developed close by. 


On Thursday I felt pretty rough, but wondered if it might be the sickness bug going around work, and by the afternoon felt a bit better. On Friday the nurse doing the dressing wasn’t happy with the discharge from that hole, so in consultation with a GP sent me to the surgical assessment unit at the Bristol Royal Infimary, a department I know very well, and many of the staff recognse me. I should probably sponsor a chair or a bed.


Anyway I was seen and antibiotics were started. The consultant beleived that an abscess had formed, found it’s way out through an old fistula scar and had drained. I explained my recent history and my concerns and am waiting for an MRI scan after it was decided I couldn’t have a CT scan because 1) I’ve had too many and 2) An MRI should show us what is going on. The IV antibiotics continue.

It also meant I missed my Aston Martin driving experience, and lunch with Joanh’s godparents. However right now I just want to be reassured that there is not another collection waiting to feed more abscesses, and that means a few days in hospital…

Superpower Sunday! #HAWMC Day 6

Today’s writing prompt asks me to consider what super power I would have and how I would use it.

When I were a lad, superheros were fewer than they seem to be now in the general conciousness. Superman, Batman & Spiderman, and a bit of Hulk. Now they seem to be everywhere! There is even an IBD Superheros group focused on finding a cure for IBD.

I’ve always been drawn to Batman (argueably not a superhero) bcause he was just a man with a sense of justice (I’m talking Adam West Batman here) and then became as the more recent films developed darker and more brooding, but still a man who trained hard, and had loads of cool gadgets.

Superman seems to have the powers going on – flight, X Ray vision, super hearing, hot eyes and cold breath. X Ray vision might have appealed to my teenage self (because boobies) but I actually think I would rather have MRI vision.

Along my journey with IBD I have had many MRI scans. And they have investigated many interesting things. Has my internal pouch healed? Is there an abscess? Why do they keep recurring?

I’m also aware of a number of people who are very fearful of the tunnel style MRI scanners, so a super hero who could just look and see would be helpful to them too.

Perhaps super speed would be good to chase after my toddler, or flight to beat the rush hour on the commute to work. Wolverine has super-healing, which would be useful at the moment with this chronic wound – or some kind of limitless energy – maybe being powered like Iron Man?

Of course many superheros are flawed – humans who have been given a power somehow, and wrestle with how to use it for the best – or the worst. And, as Uncle Ben says – ‘With great power comes great responsibility.’ – so I’ll decline having a super power, and just try to be an awesome human.