Where no probe should ever go – Sigmoidoscopy Gastroscopy and Gynaecology part 2


I’m a pumpkin, I made it to the party and so did all my little children

So on Thursday, having only just recovered from the ordeal of having metres of snake-like black tubing shoved down my oesophagus, I dragged myself to the day clinic once again to undergo another round of probing and prodding.

It was a joy that no words can describe. You really had to be there, and until you’ve had the experience of having an endoscopy you will never truly appreciate the shear horror and hilarity of the situation. It is something you have to experience to understand.

As a veteran of the endoscopy, having been submitted to so many of these bizarre treatments I have honestly lost count, having the metres of tubing probed inside my bowel didn’t really daunt me. Previously these investigations had been risky and tricky due to my bowel being inflamed with 13 years of Crohn’s/Colitis….and yes most of those times the investigations had been met with a sense of dread, mostly because of the discomfort and serious amount of pain they caused. But this time I only had part of my bowel, so although I was slightly afraid of the doctor being overzealous and forgetting I only had a tiny amount of bowel leaving me with the end of the tube sticking out of my abdomen like a weird waggling worm, I knew that it wouldn’t be half as painful or long.

I mean really there wasn’t that much to explore and what could they find that they hadn’t before? The possibilities were endless!

Unlike the day before – where I was left shaking in my boots and terrified when my GI poking around in my stomach said “oh nothing’s where it’s meant to be” referring to my stomach opening being in the wrong place….to which I could respond apart from dribbling and thinking SHIT that’s not good, get out now! – I was strangely calm. I remained cheerful throughout, well as cheerful as one can be when someone is forcing a scope up your arse.

My GI specialist nurse was doing the procedure. I was thankful for that. She knows my bowel better than I know the back of my own hand, and she was able to tell immediately if I was in pain or just uncomfortable. I guess after all these years of being my personal prober she knows just how far she can go before I will start to protest – I tend to be difficult to read as I try not to make any noise while these things are happening.

The low point of the whole thing was not being curled into the fetus position which my bum sticking in the air like a red-bottomed babboon and having someone poke around oohing and ahhing and saying things like that doesn’t look good. It wasn’t even watching in horror as the camera revealed a bowel spotted with ulcers and colitis looking like the scene from Alien, or the tugging sensation as they take the biopsies. No it was the reassuring chit chat before and during the investigation, supposed to calm me down and help me relax, but it really didn’t, do you know why? Because the nurse watching this very personal moment, and in charge of cleaning up after my bum and its contents had been exposed to the world, remarked on my address and then said “oh my brother lives on your development”. FANTASTIC so his first impression of me is going to be of a shiny bottom sticking up in the air…great first impression.

Anyway the results, from what we could see from the scope, were not great. Of course they were not the worse results of these investigations I have ever had…the last one revealed my bowel was beyond repair. This time they showed what was expected, that my Crohn’s/Colitis was very much starting to gain control on my rectal stump, and that, although it is not yet at emergency point, I am not doubt in the grip of a flare.

I mean I could have told them that without them sticking a big black tube up my arse.

I felt a bit wobbly after and considered going back to work. However, after being dropped home by a colleague I was soon glad I had resisted the temptation to go back to work. Due to the substantial amount of air I had been pumped up with I had an afternoon bout of uncontrollable farting, and diarrhoea to contend with….nice! Luckily this had gone down in time for my mate’s fancy dress Halloween party on Friday night, not that it mattered as I went as a round pumpkin! 

 

for more information on Endoscopies and other investigations for Crohn’s/Colitis see an amazing document at Crohn’s and Colitis UK:

http://www.crohnsandcolitis.org.uk/Resources/CrohnsAndColitisUK/Documents/Publications/Booklets/Investigations%20for%20IBD.pdf

 

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Being a pushy patient – why you shouldn’t always just nod along


In the nurse's room being treated after kicking-off

In the nurse’s room being treated after kicking-off

For almost 13 years I have prided myself on being a ‘perfect patient’. I have allowed doctors to stick tubes in unthinkable places, endured painful procedures, taken toxic drugs, and had so many abdominal x-rays that have no doubt done irreparable damage to my ovaries. At times I have allowed myself to be submitted to totally unnecessary painful procedures, under the misguided pretence that having a canister of gas shot up my backside would help control my condition – in reality i’m almost 100% sure this was just so some curious trainee could have a poke around in the dark depths of my colon.

I always thought that by being an easy patient, by being obedient, by smiling and going along with whatever treatment or course of action they suggest, by making their lives easier in any way at all, I would get the best treatment. I thought that by taking their word as law they would treat me favourably. I always thought by being the quiet one on the ward, who waited patiently for her pain killers and didn’t complain even when she was being starved to death by the incompetence of hospital staff (or other horrifying things) that I would get treated favourably as they would want to come to see the quiet and polite young lady patiently waiting in her tidy bed, while all the other patients screamed, kicked-off and threw things around the ward.

But it is horrifying to admit that the exact opposite is true. It has taken some very rude wake-up calls, some terrifying moments and some horrifying scenes of neglect to make me realise that being an angel means nothing to hospital staff and medical professionals. A hospital, especially a ward, is like a zoo. The patients are like caged animals fighting to get back out into the wild. Forget about survival of the fittest, more like survival of the most tenacious, rude and obnoxious. If you want something done, changed, or even want to get out to the real world in one piece you have to become a pushy patient; questioning everything; chasing up every result; and playing as many mind games on the staff as humanly possible (like a child playing their parents against each other). You have to forget being a quiet little mouse, work on your roar and step in with the big boys – start thinking like a lion, or better still a cunning fox.

The sad truth is (this might not be in every case) the more awkward you are, the ruder, the more difficult, the more you turn into the patient from hell, the better treatment you get, and the smaller the chance of you being left to lie in your own faeces for days on end, until a member of your family kicks off on your behalf. And that’s only when you’re on the ward. As an outpatient getting anyone to take you seriously or managing to get the correct treatment means – I have learnt the lesson the hard way – that you should never just let your GI have the final say without questioning things, or demanding a second opinion. It’s more difficult with your GI, surgeon or doctor, as if you kick off all the time they simply won’t put up with it, you have to get them to want to answer your calls and put you to the front of the queue, but I have started to find that simply rolling over and taking their word as GOD you will not gain their respect, and quiet frankly I’m done with massaging people’s egos…this is my health, my life, not a boardroom. 

Even monks have to go to hospital it seems

Even monks have to go to hospital it seems

Up until my most recent hospital stay I’d been the ‘golden’ patient, helping old people to the toilet, getting nurses for people in pain, pressing the call button when the lady next to me sounded like she was having another heart attack. I guess I always wanted to make the nurses’ lives easier. I was horrified by how understaffed they were and realised how little time they had to deal with little things when there were extremely poorly people to tend to…I guess that was always ok until I was the incredibly poorly person, and I was still ignored and treated by the other patients as a member of staff.

Recently I have begun to question everything absolutely everyone involved in my medical care does. I guess after 13 years of managing my own illness I have had enough of being the ‘perfect patient’ when the people who I rely on to keep me alive are not treating me with the respect I believe I have earned. When they simply refuse to listen to me. For years I have agreed to everything, which I find odd as in my job as a journalist I never let anything go without asking 100 questions…but when it comes to my health I have always just agreed, even if deep down I have known that it is quite simply not the right thing to do (the exception here is surgery, it remains the only time I have downright refused to have something done).

Ok, I’ve not turned into a raging bitch, or a hospital diva, but recently my patience has run out and I think my medical team has noticed. My GP surgery, who have really

Odd looking test results which I demanded to have explained to me

Odd looking test results which I demanded to have explained to me

shown their true colours since my operation (they are so incompetent it is unreal), only started to treat me with a ouce of respect last week, finally taking my red raw wound seriously after months of giving me the wrong dressings, ignoring my symptoms and refusing to give me appointments, choosing instead to diagnose me over the phone…and what did it take to get them to sit up and listen you ask…me getting so frustrated at the latest act of incompetency that I boiled over with fury and kicked off in the almost-empty waiting area. The result? I got the royal treatment, with the head nurse seeing me immediately and treating my wound there and then. And, due to that it is starting to get better…so I might have felt bad for getting peeved with the clueless receptionist, but I can now sleep a little better without being in constant agony.

At last week’s appointment with my GI specialist I was determined not to take no for an answer. Ok, so they didn’t help themselves by highlighting their incompetence when the receptionist produced two sheets of paper instead of my file, and then tried to convince me that those flimsy sheets made-up my entire file. No, my file is as thick as a thesaurus. When I asked my GI where it was she admitted it was lost, but not to worry my confidential information would be somewhere in the hospital and someone would find it eventually. WHAT!!! Obviously this was so ridiculous I had to laugh, but it was a wake-up call, one that said if you want to get things sorted and get these people to listen to you your going to have to start taking matters into your own hands. I did! I questioned everything, I pushed for drugs, I said that feeling mediocre was not what I had signed up for and that I deserved to feel better, and guess what, almost 40 minutes after my name was called I emerged with a procedure booked, an appointment for the gynecologist and joint specialist (have been trying to get referred for 7 plus years) and some new medication to calm down my remaining colon.

Is this the perfect patient? If so, why do they wake us all the time?

Is this the perfect patient? If so, why do they wake us all the time?

Ok, not everything is fixed, but it is a step in the right direction, and I have learnt a valuable lesson that if I want something doing properly I can’t just hope it will happen I have to be willing to step up and fight for it. The years of waiting patiently are over I’m fed up of being fobbed off, I’m ready to get in the ring and really get stuck in and battle for my fight to a pain free life.