It’s an honour just to be nominated…

So I was excited today when this popped up in my Twitter notifications:

I have now complted a profile, and would love it if you could make additional nominations via the WEGO Health website – my profile is here – you do need to complete a form to do it, but it’s pretty simple.

I’ll let you know how I get on!

Pack up your troubles…

Sorry for the lack of updates, things have definitely hard the last few weeks, so I’ll try to bring you all up to speed:

Tissue Viability

So I saw the Community Tissue Viability nurse as planned, slightly delayed. She suspected a wound infection, which a swab confirmed so I have had a course of antibiotics. This has reduced the amount of exudate from the wound, which means packing stays in and can do its job! It was probed today and has reduced from 6 to 4.5 cms in depth – so things are going in the right direction!

Hospital

Since my last post I have been back to see the hospital team too, who supported the Community Tissue Viability nurse’s plan for daily wound packing. They also explained the confusion over the wound ‘doing really well’ which I mentioned in my last post. Whilst I though this meant it was healing super quick, it actually meant that the wound bed was getting to a point where it would start to grow, having stopped. Makes sense, and I got an apology for the confusion too. One of my biggest frustrations with this whole process is that I can’t see what is going on, at least not without the use of several mirrors and lamps…

Occupational Health

I mentioned last time an upcoming occupational health appointment. This went really well, and I have subsequently met with my boss and we have a plan for me to return to work, working from home initially a week tomorrow. This has really motivated me to get those few things done that I have been meaning to do, and I am feeling much better in myself. I also took some time to go back to Board Games Club last week and played the excellent Shakespeare.

What Next?

Well, we are not there yet. Still having daily dressing changes, and there are still several weeks to go. I need to up my exercise – walking only, but I am planning what else I can do to try and lose this recovery belly I have developed. I need to reach out to some friends and make plans to see them, and have a trip back home in a few weeks for the 10th birthday of the open mic poetry and drama night I co-founded too. It is time to start living again, knowing it will be hard, I will be tired – but this is the last corner and there is light at the end.

 

The Vacuum Is Happening…

Time for another health / stoma / surgery / ulcerative colitis update. I’m writing this from the 8th floor of the Bristol Royal Infirmary. I came in yesterday as a day case, and ended up staying overnight as I didn’t go to theatre until 5pm, by which time my veins were tricky to find as I was a bi dehydrated and cold. I’d arrived at the  hospital about 6.45am because I had to get the bus in.

The plan was to do an examination under anaesthetic (EUA) and then the surgeon would decide what needed to happen to my troublesome former fistula tract which has continued to discharge (since th  surgery in January) and become once again very painful in the last 6 – 8 weeks, to the point where the strength of the pain killers have had me off work. He had always hoped to use a negative pressure or vacuum dressing – which sucks the discharge away to promote healing but we had been told initially this was not an option.

So I woke up in recovery about 7.45pm, definately staying in at that stage! After cutting whatever he has cut th vacuum dressing is on, but it is a new type that also irrigates the wound.


This should keep it clear of infection and promote the healing. There is a downside – I need to stay in th  hospital for a week with it to do it’s job, before we change to a dressing that can be managed more easily. It is pretty comfortable really, I feel some coldness when it irrigates every three hours but othherwise all is well so far.

The great thing is that my pain has dramatically reduced, so my head is clearing up and I can think straight and am less tired which is lovely. The timing isn’t great – it is my son’s birthday  on Friday so I shall miss his party- but that cannot be helped really. As is the case with a chronic illness, you have to remember it is short term pain for long term gain, and this week in the hospital and getting properly healed will give me a lifetime of birthday parties, jelly amd ice cream and hyper active children who just ate the jelly and ice cream and have then run around until they throw up on the carpet. What could be better?

So I shall have some time on my hands, if any friends in Bristol fancy visiting that would be lovely, or drop me an email or ask me a question you’d like me to do a blog about.

I’m off to watch Wales vs Portugal.

Hi ho, hi ho, back to the BRI I go…

Last time I posted my health it was all about the magic gel. Sadly, after initial good results this then failed to continue in the right direction, and after a further appointment with my consultant last week today I got the call – I shall be admitted again next Tuesday for an examination under anaesthetic and packing of the wound. BRI = Bristol Royal Infirmary.

When we met the consultant was keen to try the negative pressure dressing he had mentioned before, although his secretary didn’t mention it today when she called – he did say it would need to get special funding, so a little bit  of wait and see, but I am happy to have a plan in place at least.

Another recent post, Sometimes I lie to myself… got a big response, and I wanted to expand on some of the themes in that a bit and talk about how I feel sometimes – and when I say I am ‘OK’.

Right now, I am recovering from surgery that happened nearly 5 months ago. Sort of – it is actually a former fistula tract that was already there, and was anticipated to heal itself but didn’t. I’ve now had about 6 weeks of treatment for it – having to be signed off work again. The pain killers I have to take make my head fuzzy, so I’m not that productive – the blog posts slowed right down, I haven’t written any poetry for ages and even though the pain is mostly controlled with them I couldn’t focus to do a day’s work.

I’ve not yet been able to return to exercising. Now exercise was not a massive part of my life, but it is something I enjoy and feel good afterwards.

Included in exercising are working on our allotment and chasing endlessly after our nearly two-year old – things I enjoy (the chasing more than the digging) but cannot quite manage – at least not without consequences.

I appreciate of course that I am better than many. I am not bed bound. In every other respect I am healthy and doing very well now the infection is removed.

So, how do I cope? How do I manage? I keep a long-term view. This disruption – which might have lasted 6 or 7 months when it is all sorted will be worth the freedom to run, jump, swim and enjoy time with my family and friends when it is all done. That is the end point – and I’ll get there, one day at a time.

Take a walk on the wild side

I have managed to convince my wife and parents to take part with me in the Walk It! for Crohn’s & Colitis UK at Rutland Water on 1st May.

I have now pretty much recovered from my surgery in January, and have started back to work on a phased return. Walking is pretty much the only exercise I can manage at the moment, so it seemed like a good thing to do to take part in a national awareness raising event (the walk is one of a series around the country) and to raise some funds for CCUK too.

If you’d like to sponsor Team Harris, you can donate via our Just Giving Page – https://www.justgiving.com/TeamHarrisRutland

Aside from a small bit of wound healing I am good to go, and recovery has been going very well – I’ll do some more blogs about that soon!

The rise of online

There are now many, many things we can do online. I order my ostomy supplies online. I make my GP appointments and request repeat prescriptions online. Our gas and electricity is supplied by a company that is online only. I interact with other IBD suffers (many of whom I have never met) via Facebook and the ia forum.

I am able to read the opinions and stories of other IBD sufferers via their blogs, or see there tweets and Instagram posts. And all of that is great.

If we stick with the UK for a moment, there are however a number of groups of people who can’t access the online world in the same way as me. Those living in rural areas for example who don’t have sufficient speed. And some older people (and I’m really not sure here what would count as older) are less confident or competent online. It is now not unheard of for websites to crash – Adele tickets anyone? – due to high demand, leaving the people on the phone very little chance of getting through.

And recently, it is not just websites that replace shops, but online clubs – a subscription service that makes a regular delivery – now seem to be on the rise. I myself have two current subscriptions – the following links will take you to the sites via my ‘recommend a friend’ links. The first is with Cornerstone for shaving supplies – I’ve been using them since November and am very pleased with the shave – and the second is with Flavourly for a monthly box of craft beer. I had a gift of a spicebox subscription for my birthday from the Spicery.

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I also recently tried out Musclefood.com after a friend recommended it – they deliver chilled meats and other high protein products. Because I am a bit of a social media floozy and I started liking these companies on various streams, I then started getting recommendations for other, similar sites. I have seen at least one other shaving club, several beer clubs and another protein/ meat website.

This is on top of gin, cheese, chocolate and charcuterie clubs. As a business model, I guess  it makes sense – cheap premises, easy access (via the net) for your customers. And so far I have not been disappointed. IT does mean that our high street is having to change – if you can order everything online, why would you leave your house? It is a little scary, exciting and – when my mobility was limited post operatively – very useful.

Is there anything you wouldn’t buy online?

 

 

Recovery: Week Seven

Recovery continues, but seems to have slowed down which is frustrating. Although at a fairly moderate level, the pain where my anus was removed and where the hole is now healing is pretty constant, and worse than it was a few weeks ago. I do have a photo but I’m not sure I’m ready to share it yet! If I can work out how to hide it perhaps I will.

I have been able to start driving again, but to be honest haven’t really felt like going anywhere. Am being seen by surgical team again on Friday, but I know it’s healing – just slowly.

So bit of a boring post really, no exciting news – good for me but not great for blog content!

Four weeks on…

Firstly apologies for the lack of posts. It’s been for a number of reasons – my parents have been staying with us to help out with the two and a half stone baby I’m not allowed to lift for another fortnight amd have been very good at encouraging me to do things and get out and about.

I’ve been pretty tired, which is a main stay of recovery really and sleeping a fair bit, and early bed too.

Mostly though it’s because things have been going really well and I don’t have much to say! The partial small bowel obstruction resolved itself without any major intervention, although I had to stay in hospital a week (longer than my admission for surgery!) whilst we got the stoma output back under control. I’ve had one trip back to the hospital since discharge because the bottom wound was a bit leaky, but this was swabbed and deemed to be tissue fluid only leaking from the fistula. I have a follow up on Tuesday with the consultant but all seems to be going OK. I’ve got my appetite back and have put a bit if weight on which is good.

Before I went in my wife asked friends to write me letters which was really great. I’ve really enjoyed reading them and have now replied to about two thirds. She also wrote me a whole load of little letters with little photos and cartoons in to make me feel better, plus a colouring book and an Aston Martin driving experience (I think she thinks I look like Daniel Craig).

Of all the things that aid recovery – sleep, quality food, gentle exercise – the love and support of my wife, son, parents, family and friends is a really positive force, and I am very fortunate to have them in my life. I see on various forums and Facebook groups people who don’t have the support and understanding, and really feel for them. So thank you to them/ you.

I shall leave you with a photo of my new hair cut – it was long overdue and the hair sweeper in the barbers earned his money.

  

A small set back…

So there has been a minor set back with my recovery and I am back in hospital.

On Friday I noticed that my stoma output was slowing down, so stopped taking my Loperamide and tried to cut back on the opoid pain killers. This continued through Saturday with the addition of abdominal pain which was cramping, so at about 23:45 I called the NHS 111 service and sat up waiting for a call back. When I’d not heard back by 2am, and things getting worse, I decided it was time to got to A&E.

As we got into the car 111 called, we did the assessment and agreed A&E was the place to go. So we rocked up at about 2:15am. A&E is an interesting place on a Saturday night, a good mix of the ill and the drunk, plus the concerned friends spreading the word on Facebook and riling up boyfriends.

I’m not going to lie, there was a bit of a wait. I was then seen about 4am, and taken through. They agreed with my thinking – that I had a partial small bowel obstruction – and so the plan was fluids, painkillers and anti sickness. Whilst we were waiting for that, I was sick which was probably for the best.

It was agreed that I would be admitted to the surgical assessment unit, who had a bed going, but would need an X-Ray first. There was then a short delay for a power cut and getting a porter out of a lift, and so I made it the ward about 7.30.

After doing the admission survey about my will and being tagged, I then slept for most of Sunday! Had a visit from my mother and wife in the late afternoon, and a little emotional moment knowing that baby Jonah was downstairs but I couldn’t go down to see him. To be fair there was a family room available on the ward, but we decided not to bring him up, and I was pretty tired by then anyway. I did Skype him a bit later on which was nice.

So more sleep, and today (Monday) things seem to be going in the right direction. Stoma is more active (although not fully) and I am now allowed to eat and drink a bit. If I am sick again, then I’ll need an NG tube which I’d like to avoid if I can! Now waiting for my consultant to be informed I am here, and may then be transferred back to his care.

Will either write, or find and share, a post about bowel obstructions and ileostomies for you all!

What does recovery look like?

So I was, very encouragingly, discharged yesterday a whole 2 days earlier than first planned. Basically all the hospital were doing were keeping an eye on me and feeding me, all IV drugs have stopped, all tubes were out so I was good to go. I think it is fair to say that the BRI were  just coming out of a Code Black bed crisis, but I felt under no pressure to leave and was happy to get home! So stocked up (eventually) with pain killers, recovery drinks and letters and sick note it was home in time to see the baby in the bath and get some proper food.

So today I am 6 days post op, but have been told that I won’t retun to work for at least 6 weeks. What goes in in between?

Clips

Well the biggest reason is the laperotomy that I had – a mid-line incision to get into my abdomen – which whilst not the largest I have ever had, is still about 7 inches long and held together with 21 metal clips which will need to come out from Monday.

  
These muscles will take 6 weeks to knit back together so I can lift, carry and perform an emergency stop in the car. On the right is the wound drain scar, which seems to be ozing a little and might need a bit of attention (taking #getyourbellyout selfies serves a purpose!)

Wounds

Three in total, the clipped laperotomy at the front and the wound drain and then the stitched wound formerly known as my arse hole! All of these need to heal.

Rest vs Exercise

I spent most of today asleep. And sleep is a high priority to help the body heal. However you need to keep the body moving, so daily walks (which I failed on today) will be needed. Today I was knackered after breakfast a shower and getting dressed,stayed up for lunch and then slept for four hours! It is definatly a case of taking each day as it comes.