Pouch Removal Update

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Hello from the Bristol Royal Infirmary

I am now 3 days post op and doing really well. I spent quite a while in recovery whilst my temperature was low but I was hot, and still have the occasional sweaty period.

Today my epidural was stopped and catheter removed and waterworks are functioning which is good because that was a risk of the op. My last tube, a wound drain, will come out tomorrow.

Because my bowel and stoma were not really involved this time I’ve been eating and drinking since Friday night. The scar is slightly smaller than last time at about 8 inches and looks good. I’ve not been able to see the other wound yet as it is round the back, but it looks good too I am told.

Yesterday we managed to get Jonah onto the day room so I could see him briefly, and I’ve seen Donna, mum and dad everyday.

Something lovely Donna did was ask friends to write me letters, which have been lovely to read. They have varied in length and style, some focusing on now, others reminiscing about the past, and several dodgy photos of good times gone by.

Many of these have said they look forward to having more good times in the future – and I do too.

The time has come…

So yesterday my 2015 blogging stats arrived – You can see them here. It turns out I’ve not done a post since July. As this blog is mostly about my health, then you could say that no news is good news, and you’d be mostly right – check out that grin!

The Methotrexate worked really well on the joint pain, and all was well. I started a new job in August, but at the end of September my old friend the abscess recurred. I had a long course of antibiotics and it all went away. Around that time, I was also having lots of leaks, but with the help of the excellent BRI stoma nurses got sorted with some additional kit to keep my poo off my pants.

Sadly, at the end of October the abscess was back, and the antibiotics didn’t work. I was admitted to the BRI and the abscess was drained and my seton stitch changed to a different type – less wicking thread, more elastic band. I was discharged, but ended up back a few days later for more antibiotics. I had a really interesting encounter which was professionally inspiring whilst I was there too – but that is for another post.

So, following my second discharge and a review meeting with my consultant, it was agreed that this was not sustainable, and the sepsis needed to come out – and that means goodbye pouch, and goodbye arse hole. All to happen in the new year, and both consultant surgeons required.

A review with the rheumatoligist reduced my methotrexate doseage (it can make you more susceptable to infections) and then at the beginning of December a phone call from the BRI to arrange pre-op assessment, with a provisional date of 6th January. Cue changes to Christmas  travel arrangements to accomodate pre-op assessment and lots of running around at work to get cover sorted and . Also a conversation about possible fertility issues  – there is a small risk of damage to some pelvic nerves.

Just a few days before leaving work for Christmas, the op was pushed back to the end of January which took pressure off a bit, so we’ve been enjoying Christmas together (although it is a bit wet today). I’ve been building Jonah’s toys, and getting in the odd bit of Rainbow 6 Siege (possibly the hardest Rainbow game ever BTW).

So I shall have plenty to blog about in the coming weeks, expect hospital photos, wound shots and lots of bottom based puns!

 

I did not know the bottom of your feet could ache…

Apologies I didn’t an update after my trip to the surgical assessment unit – not much happened, other than confirming what we knew (joint inflamation) and so further tests (MRI) and checking appointments, and confirming that I need to see a rheumatologist.

Well, in the last few week lots has happened. I had the MRI a while back so had my IBD clinic appointment. The scan unfortunatly showed that the sepsis behind the pouch has returned. There are currently no clear symptoms of this (pain etc) but it does mean ther pouch excision procedure is now a when rather than an if. There is no urgency, but the excision op is a big one, with some relatively high risks, and a fairly lengthy recovery. Add in the complication of my fistula too, and it will need to be carefully timed.

I also saw a rheumatologist (at a different hospital, just to add a furthr layer of complexity) and was prescribed Methotrexate – I will continue with the prednisilone for a nother motnh until it (hopefully) kicks in.

The arthritis could be caused by inflammation associated with my ulcerative colitis, or possibly by the sepsis – either way my body, not content with kicking my guts is now working at my joints./ At this stage it is unclear if the surgery will resolve the joint pain – but I have to hope!

So, treatment in place, a few set backs, but trying to remain positive.

Ooo, this is what my ankle (the most obviously swollen joint) was like this morning!

Spot the difference...

Spot the difference…

A sudden flurry of activity

Well today was a busy day, both with work (OfSTED are coming!) and also with medical stuff! I had a GP appointment to review my test results and unsurprisingly my inflammatory markers were all raised. Also raised was my Faecal calprotectin – which surprised me as my stool does not pass through the inflamed bit (or so I though) – but I’m not sure of that makes a difference. So a referral to rheumatology was made, and some extra pain killers and steroids prescribed.

I’d also tried again to reach the hospital, and spoke to really helpful and sympathetic consultant’s secretary, who undertook to speak with a consultant and get back to me.

When I got back from the GP, there was a letter from the hospital with an appointment for the IBD clinic at the end of July. The secretary then rang back, and said that the consultant wants to see me sooner, so in the morning I’m off to the surgical assessment unit – I’ll keep you updated.

First Father’s Day!

Today is Father’s Day in the UK (and I think the US too). It is my first Father’s Day, and it has been really nice to do not too much and spend time with Jonah and Donna, which mostly involves chasing him around the floor and telling him not to bite you. 11 months is a wonderful age!

The morning started with a call to the out of hours GP for more Prednisilone – the course I had finished on Friday and last night the joint pain was coming back. Seeing my GP tomorrow for a longer term plan. Lunch at Pizza Hut and a cool T Shirt and card from Jonah, Skype call to grandad as well.

This evening Donna has gone off to a work meeting that starts early tomorrow, so I’ve put Jonah to bed and am sitting in and re-reading all the comments from the last blog post a few days ago. Most of the comments came via Facebook, and many people expressed concern about my comments about alcohol, and my use of it when I was feeling down. I’d like to reassure everyone that what counted for me as a big increase still kept me within recommended limits, though I take the point about using alcohoil as a crutch and the mix of steroid and booze perhaps not being great! As a result, as I sit alone tonight I’m sipping Vimto (with nothing cheeky about it).

If you are worried about your, or someone else’s drinking, there is information available from the NHS and Alcohol Concern online.

 

I’m telling my Stoma Story to raise awareness, and also to raise money for CCUk & the ia. You can donate via my Virgin Money Giving page – http://uk.virginmoneygiving.com/RichardHarris19

First leak!

Washing Machine

Washing Machine

… in this world nothing can be said to be certain, except death & taxes.

Benjamin Franklin

Until you have an ileostomy, and then you can be sure of one other thing – the occasional leak. This morning’s leak was small, but did result in a change of bed sheets. Thankfully it was at about 7.30am rather than the middle of the night. So what do I mean by leak, and how does it happen?

Well what I mean is that the base plate or flange of the bag has come away from the skin, allowing the contents to escape. This could be because the bag has been on too long and the adhesive has failed, hair has not allowed the adhesive to bond to the skin (I have to shave around my stoma regularly) or the bag has got too full and heavy either with stool or gas has pulled the flange away from the skin.

As I said, this mornings was just a small leak. When you get a big one, it can mean whole bed changes, or, if it happens in the day time, full clothing changes – although usually in the daytime you can feel it’s happening and rush to the toilet to change the bag!

Hopefully they won’t be too regular a feature…

 

This post is part of a series telling my #StomaStory. Please share it, and if you’d like to donate to Crohn’s & Colitis UK and the Ileostomy Association, you can via http://uk.virginmoneygiving.com/RichardHarris19

Recovery – Part 1

So after a short stay in the surgical recovery unit I was transferred to a ward. My epidural had been removed and I had a morphine pump. I still had as I recall the NG tube, wound drain and catheter. I was doing OK, although I was being given TPN – this is when you are given all your nutrients through a drip, as I was unable to eat to allow the bowel to rest. I’m sure I must have been getting better because I remember asking for strawberry flavour – this could be my first ‘morphine talking’ comment (there have been a few over the years).

I think it was a Monday I was moved to the ward. I was visited each morning by the consultant. On Wednesday morning the consultant came around about 8.30am as usual, and I was OK. By about 11am I was shivering uncontrollably, and the nurses summoned the consultant back. I think I had been allowed sips of water by a junior member of the team at this point, and I remember the curtain being pulled back around my bed and the consultant dressing down the whole team about this, and then telling the nurse in charge that from that point on only he was to make decisions about my care.

Much is hazy for me of that day which my mother refers to as Black Wednesday. I think I started to vomit lots. I was taken back to surgery – my bowel had kinked and I had developed septicaemia from the TPN needle. So my big long incision was re-opened, and it was back to square one – with more complications to come…

 

This blog post is part of a series I’m writing in the run up to my stoma surgery in January 2015. If you’ve found it interesting, please do share it, and if you can, supported CCUK & the ia by donating at my Virgin Money Giving page http://uk.virginmoneygiving.com/RichardHarris19

Not everyday is a bad day… #IBDAwarenessWeek

I’ve had some lovely feedback from my last post about a bad day, so thanks to all those who fed back. Lots of IBD bloggers are posting this week, so do check out the hashtag #IBDAwarenessWeek to find more.

I’ve been reading a few, and wanted to just add a little perspective to my previous post. My really bad days don’t happen often, maybe once every couple of months. Of course, I do have issues like the incontinence and associated pain most of the time, but I am still able to work full time, socialise and enjoy alcohol and eat pretty much whatever I want.

I can’t exercise – the pain, urgency and leakage increase, so I’m looking forward, post surgery in January to being able to exercise. I’m not over weight, but reckon my fitness level is about nil. This will also include running around with my little boy, who will be 6 months when I have my surgery.

Mentally, low level pain is very waring. Physically too. And that means sometimes you are not available for your friends or partner. I was commenting on a thread on #getyourbellyout Facebook group earlier this week. The thread was by a young woman seeking advice because her friends had stopped inviting her out because she had said no for so long. They didn’t understand her condition and the impact it had on her. I’m not sure all of my friends fully understand how my IBD affects me – it is one reason I now blog about it – but I am fortunate that they have always been supportive.

So I guess I see myself as somewhere in the middle. I’m not required to have regular hospital treatment, can work and live a pretty normal life. Things could be better, and what needs to happen is happening. Not such a bad day after all.

 

This blog post is part of a series I’m writing in the run up to my stoma surgery in January 2015. If you’ve found it interesting, please do share it, and if you can, supported CCUK & the ia by donating at my Virgin Money Giving page http://uk.virginmoneygiving.com/RichardHarris19

How wrong can you be?

So I went on my merry way with my suppositories (mesalazine) doing OK. The diagnosis was in May 2005. In August, I was supporting The UProject a residential for young people at an outdoor education centre. Sleep was scarce, and my guts were unsettled. I was popping Buscopan for IBS for the cramps and was going to the bathroom more than I wanted to. That Friday I want to see the GP who prescribed some Prednisilone foam enemas, and said it was the Ulcerative Colitis, go back if things got worse.

That Saturday I went one trip to York with a group of young people. I remember at lunch time finding a toilet in Burger King and spending quite a long time there. I don’t remember anything about Sunday.

On Monday I was taken to GP by my mum. I didn’t say much. The GP looks at me and sent me to hospital. And I do mean just looked. No real tests or exam. I was I recall quite pale and clammy. I was admitted to Peterborough District Hospital, and that was the end of my summer. I was to be in hospital for 7 weeks.

I was told I was having a severe flare of my ulcerative colitis – at least that was what most of the doctors thought. One doctor was keen to ensure that possible gastroenteritis was explored because of the residential project the week before, but this was soon ruled out. The dosage of steroid I was on was increased, lots of blood taken to check inflammatory markers among other things. One of the things that was done regularly was to measure around by belly to see how swollen it was – and it was pretty swollen.

When the steroids didn’t work I was given cyclosporin – a drug used after transplant to stop the body rejecting the new organ.Whilst this was helping, progress was not fast enough, and so after about 3 weeks the surgeon came a calling and told me that my colon needed to be removed, and a stoma formed (a sub-total colectomy). At this point I was going to the toilet to open my bowels 10 – 13 times a day. I don’t know if you are familiar with the Bristol Stool scale but I was a 7. And a blood stained 7 at that. I was losing weight, was weak and really very very ill. I don’t really remember, because I was pretty out of it. I remember it being a Sunday that the surgeon cam along and told me this was going to happen. The stoma nurse came around an drew a cross on my abdomen where my ileostomy (small bowel) would be coming to the surface.

So I said goodbye to mum and dad as I off to theatre, asked the surgeon to  give me a shark bite finish, and some time later woke up in the surgical recovery unit (which incidentally gave me the best care of any hospital ward I have been on so far) with an oxygen mask and three tubes – a catheter, wound drain and naso-gastric tube (tube to the stomach that goes down the nose), a 12 inch/ 30 centimetre incision down my middle that was now stapled up, plus a couple of drips and an epidural for pain relief. Oh, and a big clear plastic bag over my new stoma to catch my bodily waste.

Although I was quite out of it with the pain relief and coming out of the anaesthetic there was one bizarre feeling – I felt better. And the reason for that? 150cms/ 60 inches of diseased colon had been removed from my body. I was told afterwards that when they opened me up, it was evident that soon my colon would have exploded (not the medical term) and that would likely have killed me – stool in the blood is not a good thing after all. So for me, as is the case for many IBD sufferers who need emergency surgery – my stoma saved my life.

 

This blog post is part of a series I’m writing in the run up to my stoma surgery in January 2015. If you’ve found it interesting, please do share it, and if you can, supported CCUK & the ia by donating at my Virgin Money Giving page http://uk.virginmoneygiving.com/RichardHarris19

Fundraising launch!

In May 2004 I was diagnosed with Ulcerative Colitis. I didn’t really know then what it was, and in August of that year I was admitted to hospital when a severe attack took hold. After several weeks and lots of drugs, my colon was removed, leaving me with a stoma, and using an ileostomy bag to collect my poo.

The next year I had an internal pouch formed, and had several months of further problems, and eventually further surgery. Things were good for a while, but in recent years I have had problems with abscesses, fistulas and infection, and some other related unpleasant side effects. Tonight I walked around our close with my son trick or treating, and when I got back I was in pain and bleeding.

So the surgeons have been consulted, and the pouch is going to go – in January. Well, that will be the first step.

I’m going to be blogging about this surgery and recovery, and filling in what has happened to reach this point. Inspired in part by the #getyourbellyout campaign, I’m going to be fundraising as I do this awareness raising for two charities that have given me support over the years – The Ileostomy & Internal Pouch Support Group (the ia) and Crohn’s & Colitis UK.

If you’d like to make a donation, you can visit my fundraising page at http://uk.virginmoneygiving.com/RichardHarris19

If you have any questions about what is going on, then please leave me a comment or get in touch via Twitter.