"Boom! Boom! (Happy Christmas!)" Christmas single raising money for Crohn's & Colitis

I know! I know! It's too early for this. But it's too late to find a cure for Ulcerative Colitis . . .

SO . . .To amuse you, here's my small composition for Christmas. The Great British Christmas, as it is usually lived. :)

If you like it you can donate a small amount to the research into Ulcerative colitis and Crohn's by visiting my just giving page here
 
http://www.justgiving.com/Roger-Knott-Fayle/eurl.axd/c1bcfad60e3efc43bd513f5d398842ed

You can also share it with others who might find it amusing.

J Pouch construction, benefits and problems

Fitch's Sketches

It’s my second meeting with Mr Fitch, the surgeon. We’re waiting in Room 7 with the ominous sub-label “Demonstration”. A tissue covered bed awaits the next person, and the noises of the corridor echo around.

Fitch enters; he’s a tall man with very short hair, glasses and impossibly clean hands. The wrinkles around his right eye are slightly more surprised than the left. I wonder if this is the eye that he uses to look down microscopes. He shoots out a hand at me, and then sideways at Clare. I have my questions spread out before me, a copy for all three of us so we can keep track of the conversation.

My first heading on the list is “What are the implications of doing nothing and continuing as I am?”

Before I even ask the question Fitch is off like a busy man on a bicycle approaching the subject without reference to my sheet. He is talking about the fact that I still need another operation anyway; whatever happens. He’s predicting my questions very well. I wonder how many times he’s had this conversation.

It seems that the tattered ribbon that remains of my gut (rather horribly called the – I hate to even write it – the stump) has been left in case I want to get reconnected. However if I don’t then that too must be removed. So whatever I decide I still face one more sharp encounter. This operation is because the stump itself may have the remnants of colitis and could even later develop into some kind of worse disease. After that has been removed there is no going back. It’s done and I would be a permanent ileostomy. There is a slight risk here of accidentally damaging “the naughty nerves” in which case you are limp and leaky. (Nice)

The next question is about time, do the prospects of successful surgery change with age? Not really it seems. He’s operated on 60 year olds who don’t like the stoma and he’s had 17 year olds who say they’ve had enough and they don’t want more operations.

Next I’m interested to define what is meant by failure. He says this whole question of success and failure is quite interesting. In one sense failure is a j Pouch that has to be aborted, and you have to return to ileostomy as a result. There are a number of possible reasons failure he explains, grabbing my question paper, turning it over and scribbling on the back. (See above) The two main causes of failure seem to be when the join between the newly created pouch and your backside leak. Obviously this is extremely bad news as your body cavity is now filling up with sludge. An anastomatic leak. The other is where an infection works it’s way from the gut outwards through your flesh to the surface – a fistula. Lovely.

It’s to prevent such nastiness that in the UK there are two operations. The first forms the pouch, which is not used for a few months while it completely heals up before it has to deal with any crap. Once it’s been proved watertight by means of a liquid and an X-Ray, reconnection is made and you are back to being a bum wiper. Often in the US he says it's done as one operation but there is a higher chance of a leak / infection that way.

Interestingly he also talks about how success is hard to quantify as well. The fact that you have a functioning leakproof pouch does not, in his opinion, equal success. “I want people to be happy!” he says "Despite continence you may well be going to the loo up to 8 times a day, and you may be unhappy with the quality of your life."

“The thing about you guys” he says “is that you’ve forgotten where you were. Your quality of life was terrible and frankly you were dying. An ileostomy isn’t natural – it takes some management and your skin can be itch and uncomfortable but . . . compared to where you were. The ileostomy is an amazing operation and it’s been around for a long time.” In fact this kind of surgery has been around since the 1780’s or thereabouts.

To find out more about the history of the stoma you can start here http://www.stomaatje.com/history.html

“The 85-90% success rate has to be taken on board very carefully” he says. "If you are one of the 10% of failures, then that’s 100% failure for you. You know it’s OK most of the time to cross the road anywhere, but if you knew you were going to be hit you’d use the bridge 100% of the time”.

That’s true isn’t it.

Post Op monitoring and care is minimal he says. “Once you’ve got that far and I’ve monitored you for a year that’s it. You’ve been prodded enough by then.”

One other thing that might interest you: If you have lost your colon you are more likely to suffer from iron deficiency, b12 deficiency, and get arthritis. There’s also an increased risk of kidney stones of a type that don’t easily show up.

“You have to really really want to have a J pouch. If you are managing OK with your stoma then I would urge caution”

So there we are.

I’d be very interested to hear your views. Would you or wouldn’t you? If you have I like to know about your experiences.

May we live to be 100

An expert view on reversal surgery

 Should I jump?

I recently wrote to my surgeon to get more information about the pros and cons of reversal surgery. Here's his reply:

Dear R. Sole

In brief

Average frequency 7-8 X / day but able to defer defecation until convenient. Some people (probably less than half) still get up at night.

Overall satisfaction rate after pouch surgery =85%  (definitions are very woolly though)

The quality of life in people who have had a failed pouch procedure is measurably less good than it was before they had the pouch procedure

“Failure” (again definitions are very woolly) rate is approximately 10%
 

Would it be helpful to meet in clinic?

I can answer all these questions

There is extensive medical literature to draw from. However the difficulty with all such statistics is that they hold no predictive power.
 

Best wishes

Man with knife in green pyjamas.

A Quick Guide to the structure of the intestines; or "Do you know your arse from your ileum?"

 I had a conversation the other day with someone who didn’t know the difference between the commonly understood colostomy and the less well known ileostomy. Why should you know unless the red hand of fate intervenes in your life and hits you with something like colitis or Crohn’s?

I’d never heard of it before it came my way.

So here’s a quick run down of the guttering. . . . (Click on the image below to enlarge)

Gut Map - Roger Knott-Fayle

Mouth: Where you put it all in

Esophogus: Pipe down to the stomach

Stomach: Cement mixer and vat that breaks down the food

Pyloric sphincter: Stops food that has not been properly processed by the stomach from moving on. When it’s “done” it’s called “Chyme” and this is allowed through the spincter to be further processed in the . . .

Small intestine

Duodenum which further digests food and extracts nutrients. The duodenum is the first part of the small intestine.

The jejunum – part two of the small intestine – absorbs carbs and proteins.

The Ileum – the last part of the small intestine where fats are absorbed into the blood stream

The small intestine finishes with a valve called the ileocecal valve. This stops anything coming back up from the large intestine.

The large intestine – the colon- is about 5 foot long and starts with the cecum which is a large pouch which receives the gunge that emerges from the small intestine.

The colon has four parts the ascending colon, the transverse colon, the descending colon and the sigmoid colon this 5ft of gut is mainly concerned with absorbing any water back into the body, and acting as a packing and warehousing unit before expulsion at your soonest convenience.

It is this last 5ft where your ulcerative colitis lurks.

So depending on the severity you might face either an ilesotomy, or colostomy.

If, like me, your last 5ft is so completely kaput, the whole 5ft comes out and the hole – or “stoma”(Latin for opening I think)- is formed at the end of your ileum. Ileum stoma  which contracted down becomes ileostomy. This is where everything exits me.

If your last 5ft is not so completely kaput, for example if the colitis is only in the sigmoid section of the colon, you get to keep the rest. In this case the hole is made on the colon; colon stoma shortened to colostomy.

In the case of Chron's I believe, please correct me if I'm wrong, the problem can occur anywhere along the small intestine or the long intestine. In the case of ulcerative colitis it occurs only in the colon.

Gut-Brain

Hello gentle reader,

In the words of Talking Heads "When I have nothing to say my lips are sealed"

Well, still nothing new here really except to say that watched this programme on BBC the other day. Much of it will be nothing new to a seasoned UC sufferer. However there is an interesting aspect of the gut which is that it shares some similarity with your brain.

I recommend it to you. Here's the link:


http://www.bbc.co.uk/iplayer/episode/b01kpt6c/Guts_The_Strange_and_Mysterious_World_of_the_Human_Stomach/

Just have to say . . .

The journey that starts with guts ache can lead you to embark on new journeys and find out new things. 

Ulcerative colitis changed my life, and I venture many people who read this blog will feel the same. How it changes you is largely (not entirely) up to you?

I wonder if you don't acknowledge your journey, if you have not traveled?

On my particular journey I found a lot of pain and anguish, and I was taken to some frightening places; but there was more.

In the very nadir of fear I stumbled on something that might have helped me earlier if I had only known. It certainly helped me as I faced the knife.

Anyway- my journey continues and this is somewhere it took me. . .

Ulcerative colits, Eczema, and positive imagery.

Calm and relaxed

I don't mean to get all weird on you, but I thought you might be interested in this:

I found out an interesting thing the other day - there seems to be a bit of a link between Eczema and Ulcerative Colitis.

Imagine the skin. It is made up of many layers, and is very complex, but I am going to simplify it to make the principle clear. In a layer that lies below the surface, all the cells are packed together. The function of this layer is to stop water escaping and thus the skin becoming dehydrated. The way that this layer does it, lies in the contact area between the cells. Particularly towards the surface of the skin. Here the edge of each cell is bound to the next one by what is scientifically (and delightfully simply) called "Tight Junctions".

In tight junctions a kind of mucosal layer on each cell bonds together. Almost becoming one. This forming a kind watertight seal.

Above this there is an outer layer of cells. The ones you can actually see on the surface of the skin (I think) called the Stratum Corneum. This layer can be imagined like bricks forming a wall. The mortar that binds these bricks together is made from lipids. This layer has the function of forming a barrier to the outside world with all its microbes and chemicals etc.

But guess what. It seems that in both Eczema and Ulcerative colitis (on the inner lining of the gut) this process has broken down. The result is all too familiar to many readers of this blog. If you have ever seen UC during colonoscopy you will see that it actually quite resembles Eczema.

So, given my interest in hypnosis and imagery, and the fact that I have a bit of eczema on my lower leg I am trying, under self hypnosis, to imagine the cells of the Eczema healing and the barrier becoming functional again.

You can only try can't you? I will be interested to see if it can improve the situation.

So I have been doing this for a couple weeks now. Everyday I do about 30 mins. I will report back if there are any changes. Do you think I should make up some imagery for UC?

As a related aside if you want to download a free mp3 file, of a journey that simply encourages you to relax and let go you can do so by clicking here.

It doesn't have anything to do with eczema or UC but it will give you an idea of what it is like. Just get yourself comfortable and go with the flow. Don't listen to it in a car or in any situation which to fall asleep would be dangerous.

If you are interested to ask questions, delve deeper, or are considering a little personal archeology AND if you happen to be in Nottingham on 28th April at 3:30pm you could attend my free talk on the subject. It is at the Broadway Media Centre in the lounge.

If you'd like to come along please just send me a message from here, or from the download page I've linked to. There are about 15 seats and I need to make sure I know how many people are coming.

No obligation and a free CD to take away.

Interview part 1

This is the first of a series of snippets from the interview on www.trentsound.com.

I'm working my way through it and cutting it down a bit.

In this section everything is going nice and smoothly.

I hope you find it interesting.

This is the sound of arkayeff

Dear Reader,

Now by the wonders of the incredible technology you are using to read these words it is possible to find out what the author sounds like.

OK I admit this is shameless self promotion, but if you wish you can hear me on the radio talking about hypnotherapy, film, music and more. All you have to do is point your computer at http://www.trentsound.com/ this Saturday the 17th between about 5:15 pm and 7 by the clock on this website.

I'm being interviewed by the very talented Rapunzel M.A.P.

Having said that, I would like to say again, that it was the strangely convoluted and painful path of my quivering gut that brought me to Hypnotherapy as a client, and this in turn has opened my eyes to many new things including this very unexpected opportunity.

I remain

Glory of the world

Having something like Ulcerative Colitis by no means a pleasant situation.

My Dad, who died in 2004, used to own a number of Skoda cars, when they were still cars that everyone laughed at. Despite the fact that they were spectacularly cheap, my Dad also loved them for their badly translated user guide.

He would turn, in times of crisis, to the section entitled "Taking the car in tow" which described how to extract the vehicle from the scene of a crash.

This section started with some words to calm you in your moment of anxiety and panic:

"Having a crash is by no means a pleasant situation . . ." My Dad would chortle his way through the paragraphs. "Try not to arrive at red light with screeching brake" it advised in the spirit of prevention.

Is having ulcerative colitis a bit like being issued with a 1980's mud brown Skoda for a gut? Maybe. Maybe we somehow arrived at the red light with "screeching brake".

I have wondered about this in the past, and I'm still not sure.

If you are interested in the plumbing and the stitching, this post will not satisfy you. If you are interested in more than your own belly button in relation to life (and death as well) then maybe you might like to look at this blog entry. It is written by Gloria, who is (amongst many other excellent things) a funeral celebrant (a humanist celebrant).

I'm not in the least pointing towards Gloria because UC and death go together; rather I'm pointing at Gloria's philosophical post because it picks out many things that are relevant to someone with UC

I suggest you get some sewing machine oil and lubricate all the little wheels of your mind before giving it something really nourishing to bite on.

Click HERE to start

The Journey

OK, I realise this is not specifically about Guts and Blood, but I hope you might be interested in sending 4 minutes watching this, my 2nd video in a series of 3, about Hypnotherapy.

My journey to become a hypnotherapist started in the murky entrails of the dread Ulcerative Colitis. I therefore include it as a part of my journey.

I hope you will like it, and I think it contains quite a few interesting things to think about.

May you live to be 100

One thing I learned . . . .

This post is to re-affirm that something good can come from something bad.

This is part of the way I slipped off the handcuffs underwater, escaped from the sack, and swam up to the surface.

It's also about the process and journey that I took, helped that me to look beyond the immediate horror and fear. I don't know if it would be the same for anyone else?

This is the first of a few videos that I am working on, and I hope you will find it of interest.

I made it as promotional, but I really hope it is informational as well.

Recognising the underlying cause of stress and anxiety, and taking a different stance in relation to them was important for me in changing my attitude to the medical profession and my condition.

It didn't cure the condition, but helped deal with effects of it.

Tranquility to you all.