Saturday, 21 February 2015



Fuming doesn't even come close to how I feel right now. Life has been SO hard lately and getting all this down on "paper" in a coherent way might be a bit of a challenge but here goes!

Rewind back to November (2014) my jej tube started to misbehave. It started with a niggle and what we thought was granulation tissue around the stoma. So I told my GI and went to the gp for some silver nitrate to burn off any troublesome tissue (nice huh). The granulation disappeared but the pain was getting worse and now it was weeping all the time too (infection was ruled out straight away).

So, step two was to ring my team and get someone with experience to look at the tube and find out what was going on. December, I get an "urgent" appointment to see the surgeon who initially placed the tube for me, by which time I was having to take the dreaded oramorph to be able to get to the appointments!

My mum and I attended the appointment together like we always do to make sure everything is covered. We arrived at the clinic to be greeted by a registrar instead. No problem, he's a surgeon too right? NO…. just NO! He was about as much use as a chocolate tea pot and really didn't know what to do other than order and ultrasound to check for fluid collections. Fair enough, that's fine, just do it quickly PLEASE!

It's nearly christmas.

A week goes by and I'm getting worse not better. no sign of a scan and the response from the tube nurse is, "it's christmas, there's nothing available." So she arranged for me to go and see the surgeon (who we should have seen in the first place) the next day.

As usual, my mum got the job of taxi service! We arrived a little early but when we got there it appeared that he hadn't been informed of our appointment because he hadn't checked his email. Great start!

When he did finally arrive and check things out he decided it had to come out. The tube is eroding on the inside and the skin is mottling around the site. It feels like someone is pulling it from the inside, causing my abdominal muscles to spasm right down to my pelvis. It REALLY needs to come out!

I go home knowing that I would have to wait until after christmas, which was obviously not what I wanted to hear but I get it, winter is a strain blah blah blah.

Well, on xmas eve, life decided I really didn't have enough to deal with so it handed me a whopping dose of the flu…..yeah…..thanks! So I spend xmas day wrapped in an electric blanket in the corner with Freddie krugger having a pop every time I needed to cough, move or shiver. The oramorph had completely knackered the rest of my gut so I had to stop taking that as well. (MERRY CHRISTMAS!)

Fast forward to today (feb 21st) What's been done?

Erm, well?

I was ringing the tube nurse every fortnight until last week to find out if they had a date. Not unreasonable, not pushy I just need to know when because Im really not coping with this.
In our last conversation (after the usual flannel… bed shortages blah blah fucking blahhhhhh) she told me that she couldn't tell me when it will be, neither could anyone else and she didn't want to be piggy in the middle anymore and that I should try and find out myself through the secretaries!

Oh my, I really can't take much more of this telephone ping pong!

I rang the secretary straight away and explained what had been going on. Horrified by the situation she went off to find out what was happening. GREAT finally! She rang back the following day to say that she still couldn't tell me when it would be but I had an outpatient appointment coming up (today) and I should raise all my concerns when I see him.

I thought to myself, why do I have an appointment with him again when he has already decided what he needs to do? But in my naivety I thought it was because he wanted to see the stoma again since its been 3 months. Plus, the tube has started leaking so I've been tying a rubber glove over the end of it to stop the (sorry for the graphic explanation) "shit" from leaking all over my clothes!!!

Yeah that was dumb…. dumb dumb dumb!

Today my husband and I went to that appointment. We walked in, sat down and asked… when are you going to sort this out? Erm…. I can't tell you I don't know!

(Is it me?)

Why have we come to this appointment then? Erm… I don't know, someone must have booked it by mistake!

(Really is it me?)

I asked him why he couldn't tell me and he explained that I'm complicated and they want the right people there etc etc blah blah blahhhhhhhhh.

So I politely reminded him that IF I didn't have a problem with local anaesthetics it would be a quick procedure.

He agreed. Yes you could have had it done straight away as a quick in and out if you could have local anaesthetic (they don't work on me).

So that being said, what exactly is the complex part of this?

He said, " I'm not an anaesthetist so I can't tell you. All I know is my part of the job but given your allergies etc this makes the anaesthetic a higher risk."

What fucking allergies? I'm only allergic to cyclizine, nothing else…zippo zip!

We were about to leave when I asked him if he was even going to look at the tube or not. If I hadn't asked he wouldn't have even thought to look.

The only solution he gave was for the leaking, so they replaced my  practical waterproof glove with….gauze?… so it can soak into that, and THEN my clothes! EXCELLENT IDEA…ugh…aaaand the rubber glove is back. I look so good right now!

All in all I've dragged my family to Leeds 3 times now and I'm no further forward than I was when I started!

If you read all that and followed it your better than me ; ) Sorry for ranting but Im so so sick of having to fight for every single thing. It's just wrong and I know it's not just me, it's everyone. Is it so unreasonable to ask your practitioners to keep you comfortable in the absence of a cure????

P.S. Oh and the scan… the urgent one….ordered in december… yeah I had that at the beginning of February!


  1. Dang, someone needs to knock a few heads together!!! Don't you wish they had to deal with these things from our side? I'm so sorry you've had to go through so much to get what should be a simple procedure. Big gentle hugs, my friend. I wish I could help but being across an ocean makes that a bit difficult. Know that you and yours are in my thoughts and prayers. Plus fingers crossed that you get the care you should have been receiving all along.

  2. I always think, when my drs are so bloody useless and make fslse promises (still waiting for alternative iv access after being told in September it would be done in the next couple of weeks and I'm still waiting) I'm getting infections every few weeks that they can't treat cos of lack of iv access... And the infections aren't serious enough to warrant temporary central access and I'm running out of central access thst I need to survive due to tpn dependant like you are. so i am constantly left to suffer waiting for the inevitable infection to get serious enough to warrant central access - which is is inevitable cos my body cannot fight untreated infections with no medical help. I every month I'm in this cycle of getting an infection thst can't be treated until ut becomes dangerous, which it always does. Then they panic and treat as emergency to treat / avoid sepsis. This is not a sensible long term option but seems I'm going to be in this merry go round until things become life threatening cos then they Will help. Why shoud we wait till we are on deaths door before intervention which could avoid the whole thing??
    Apart from the fact it makes life hell, constant pain and illness, it can in no way be the most cost effective way to manage our condition.

    I'm so sorry to hear that your having similar poor treatment but in a way it's comforting to know it's not just me. sending huge gentle hugs. Xx

  3. Oh girlie I'm so sorry to hear you had to go through that! I hate it when practitioners make false promises! Sending big gentle (((HUGS))) <3

  4. Oh my Goodness Minx! I just happen to come across your story and just read your latest blog post... I cannot believe that a health care system can somehow justify a lack of just care by stating that somehow it is your fault because of your complexity!! How unjust and uncaring. Where is the accountability in our medical profession!

    I am not sure in the wisdom or reason of your daily and ongoing suffering but I can see your strength, determination, fire and light because of it. I do not know you nor will i ever meet you (I live in Australia!) but i will never forget you


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