With friends like these...

I arrived at the reception desk of the X-ray department and waited for the receptionist with big earrings and too much make-up to finish shuffling papers around, tell her my name. She repeats it and says take a seat and wait to be called. Seat number 1. I pick up a copy of The New Scientist and read a article about how scientists say time does not exist and is not an essential component for the most theories to work, the exception being Quantum Theory.

A nurse calls my name along with the names of two other people. She marches us about 10 feet to some lockers and in front of an audience of people wearing hospital gowns and anxious faces. A neatly folded stack of hospital gowns are on her other side. Being British we instinctively form a queue in front of her, I wait at the back.

“Please take your top half and bottom half off in those changing rooms over there, take this and put it on, then put your things in one of these lockers then sit in this area and wait to be called”. She repeats the same mantra two more times so she feels she is complying with the sign on the wall that says 'treat patients with dignity'. “You can keep your shoes, socks and underwear on”. I am a little confused for a moment wondering how to take my jeans off without removing my Nike trainers. She sees the confusion in my face and repeats the mantra. “Okay?”, “Thanks” I said. I strip down in the changing room, a man in the cubicle next to mine is moaning about how difficult the gowns are to put on and tie up – I don't have a problem, its not the first time. I roll up my jeans so the contents of the pockets don't spill out. I wish I was going swimming instead. I wish I'd taken that copy of The New Scientist with me too. I push my stuff in locker number 7 hoping that I will make it to seven seats before the morning is out. I spin the keyring with the big number seven on the tag around as I trot to...

Seat number 2. 3 minutes twiddling my thumbs and thinking about the number 7 and its significance in my life. The nurse calls my name and says “This way please”. She walks ahead of me, I walk at my own pace. 20 feet from seat 2 I am sitting in seat number 3, its more of a bench, cushioned and a nice view of 2 thirsty house plants. This is more of a public corridor with doctors and nurses are bustling by with authority and medical files. I am wearing the hospital gown.

5 minutes now. A big lady with a bright yellow insulated apron confirms my name, yes, and takes me to chair number 4 in a room just off the corridor, she sits next to me in the comfy chair with arms rests.

“You know what you're having done today?”

“Yes, a gastro-graffin enema”

“Have you had one before?”

”No, I have some questions though.”

“Well, we will be putting some water in your bottom that can be seen by x-ray to make sure there are no leaks from you pouch and your... that” pointing to my abdomen “can be reversed”

“No, I don't use that word.”

She tilts her head to the left. “What word?”

“Reversal...I hope to be reconnected but I am not ever going back to how things were. I use the word 'reconnected'”

“Well we use the word 'reversal'”

“Are you the radiologist?”

“No, I'm the nurse”

“I'd like to ask the radiologist a couple of questions.”

“The Doctor is preparing in there at the moment, you can ask me and if there is something I can't answer I can ask her to talk to you”.

“Its just two simple things really. I would like to ensure that you are aware that I do not have a rectum and secondly that you will be using a Foley catheter for the enema.”

“That's not going to be possible. We use a special catheter. I will have a word with the Doctor but this is how we do this procedure”.

Off she goes through the big door that says 'please notify the radiographer if you are pregnant'. I move in to the comfy chair, number 5 – almost there.

5 minutes later the nurse is back with a clear plastic bag, inside is a coiled rigid blue tube with a pink thing on the end of it about the size of an index finger but looking like a monkey penis.

“This is what we use”

“No. I won't be letting you put that inside me”

“it just goes in your anus, we use lubricant, it doesn't hurt at all. Might be a little uncomfortable but it doesn't hurt”

“Look, I would prefer to speak to the radiographer about the procedure as I am certain that the Foley is not as uncomfortable and I know it is a perfectly reasonable request. I only have one pouch and I will not be letting you or anyone else put that monkey penis in my backside”.

Off she trots again. I am wondering how I can get another two chairs in.

Next the door opens and the nurse calls me through.

She tells me to take off my shoes and socks. “And your pants” with a friendly smile, “put them on the chair. White coat syndrome kicks in and I comply. I sit down to take my shoes off...seat number 6. I am smiling.

There is a big beige General Electric X-ray machine, attached partially to the ceiling and a metal bench disguised as a bed with a carefully placed disposable absorbent sheet and cushion. At the end of the bench is an infusion stand with a bag of clear fluid and the blue tube and the monkey penis dangling freely. Beside the bench are some steps and about 2 feet to the right is a big monitor on a trolley with a cable wired to somewhere behind the screened off windowed area in the far right corner of the room.

An inch shorter, without my shoes on and with no boxer shorts on I feel they are trying to dent my resolve. I walk over toward the radiographer who meets me beside the bench. She is the first person today to introduce themselves. She asks me why do I want the Foley. I explain that I don't want the tissues in my pouch damaged nor the anastomosis site.

“Have you ever done these with a Foley catheter?” I ask.

“No”

“How many of these have you done with people with ileo-anal pouches?” Thinking I might walk out now.

“Not that many.”

“So how many is that? More than 10?”

“No. But I am aware that the Foley can be used. The catheter we use does not hurt. I know the reason you don't want us to use this” pointing at the monkey penis “because you are afraid you've not used your back end for some time...”

I don't say anything, even though I wanted to. Salesmen say nothing once they have got the sale and I am happy for her to convince herself in to complying with my request. She looks at the nurse and says okay. With a little smirk. The nurse looks a little pissed off. But disappears off to get me my Foley. Jack would be proud.

The Doctor asks me to get on the bed. I climb up and sit down. I think that counts as 7. She asks me to lay down on my left side with my back to her. I ask if its possible to get the monitor moved round so I can see the images. She says she can't. “Are you sure?”. No she's not giving in completely today but does concede that she will show me the images at the end.

The nurse returns with a plastic bag and what looks to me like a Foley if not a little wider tube that I remember. There seems to be a few more women accumulate in the room behind the screen. I think they might want to see my bare behind but realise its more likely out of curiosity of my unusual anatomy. I should have sold tickets. They should have asked my permission. So much for the dignity bullshit on the wall. In the corner of the room the nurse is fumbling over the connection on the pouch of Gastro-graffin and the Doctor helps out “Just tape over it”. Without the fancy uniforms and expensive equipment this is an amateur racket. I want to get this done and out of the way. Its a necessary step and I have had worse things done to me by more incompetent people. The proceedings are going ahead but I am the one in control.

The Doctor inserts the lubricated catheter and I feel a sting at the point where I think it passed the anastomosis. I notice that the liquid has not been flushed through the tube so it is still filled with air. They neglect to inflate the balloon in the catheter and tape to tube at various points to my hairy behind. “Oh no!” I say jokingly. But then seriously “Taking those off is going to be the most painful bit of this procedure”.

Before I get to say anything else, air is inflating my pouch and I can feel it gurgling inside. Moments later ice cold liquid is filling in to my bag. I touch my bag reflexively. Its cold! They didn't even let it get to room temperature.

“Please move your hand please”. They take a couple of pictures and ask me to move on my back. Awkward with a tube in your bum. Then on to my right side. My bag is almost filled and I tell them. They turn off the tap. “Please move your hand”. My skeletal hand is on the picture. I am supporting the bag as it will detach if I don't. I am told to turn back over on to my left side। The radiologist does the most bizarre and physics defying thing. She starts to drain my pouch contents via the catheter and asks "is your bag emptying now?". The iced water is not even in contact with the stoma. "No, that's not going to work. Please stop before you hurt me." Stupid. Stupid. Tapes are removed. Ouch. Ouch. Ouch. “Think of it as a free wax”, the nurse jokes. Its not funny. But it is now. She gets her little revenge. I am certain she will need an enema at some point in her life and karma will be served.

I sit up and look at the monitor. The pouch is illuminated with white light, a narrow white tube of light gently coils up to my right side, its my ileum joining to the surface. No leaks. The pouch is water tight. “It looks okay to me” I say...”Yes, its all good. You can go ahead and get joined back up now”. I am feeling quite elated and surprised and my own delight. I am smiling. I jump down from the bed forgetting I have a pouch full of fluid inside me and a full bag of iced water. The clock is ticking...I need to get to a toilet

“Can I have a polaroid?”

“No, we can't do that”.

“But they could with the scans of children when they were in utero”.

“Sorry, no.”

“What would you say the capacity is of the pouch at the moment?”

“There is no way we can work that out”.

Seems ridiculous to me that they can't and on the way home I figure out how easy it would be for them to calculate it.

As I am taking a final mental picture of the screen.

The nurse asks me “Do you have a medical background?”

“You could say that..”

I fly to the toilet. Go. Dress and get out of the hospital as soon as possible.

Opening Old Wounds

Opening Old Wounds

I'm 4 years old. My sister will be born today and my dad has taken my brother and I to a park nearby the hospital where my mum is being prepared to be cut open. My sister will be born today. It is also the day I graze my stomach flying off the end of a slide in the park and landing on the inconsiderate gravel . It is the first time my belly is damaged.

I'm 11 years old. I feel tired all the time. The school dinner ladies say I look like a ghost. Every day they say this. I can't eat. I can't eat. It hurts. I eat a bag of Thunder-cats from the tuck shop, minutes later I have to run to the toilet and spray the watery contents of my guts in to the bowl. I am bent double. The pain cuts me in two. It hurts so much I am salivating and the spit pools in front of my feet on the floor. Mixing with the tears. I go home and fall asleep within minutes of walking in the door. My school uniform on. In a foetal position. If I sleep I can't feel the ache and its the ache thats sucking the life from me. I stop growing.

I'm 12 years old. I weigh 24 kilograms. I am in a wheelchair transferred to a new specialist hospital withered from the extended period of testing and testing and tubes, vomiting, transfusions and x-rays that the local hospital put me through to come to a diagnosis. Hospital had become my new home but I don't accept get well cards. They don't know what's wrong with me. My mum and dad cry. its not cancer. They thought it might be. Its not cancer. Its Crohns. Now I accept the cards. They know I'm ill. Its official. I have a diagnosis. For what its worth I have Crohns Disease. Or rather Crohns disease has me. I don't care any more. I am skin and bones. I try to run and fall over. The sound of my dads keys jangling let me know he's on the ward. He can't sit on the bed. It makes me ache. More scopes.

I get stronger. They know what there doing at this hospital and there are other children there. I have more tests. More scopes, in my mouth and up my bum. They hurt but I am not scared any more. They know what's wrong with me so I may as well make the most of not having to go to school. Sometimes they give me injections for the pain which make me feel floaty. They pain is still there but I can't be bothered to complain about it. i go in to myself and breath.

I make friends with children from the cancer ward. They all die. I stop going to the cancer ward to borrow films. I stay on my bed and sleep when the ward teachers want me to join them in class. I draw pictures of food. I can't eat food but I draw everything I can think of that I will eat when I can. I make shopping lists. A nurse makes me watch a group of children eating McDonald's Happy Meals. I need to get used to it, she says. I feel sad. Then I realise its up to me if I want to be happy or sad and I go and find some picture books to read.

I'm 13 years old. I am fat. I am home and I am fat. I sit in a corner of the sofa in my lounge and I can't eat. I have a tube going in to my nose and down in to my stomach. I put it there. i have do that every day. I haven't eaten food for a year. This yellow sick smelling juice goes through my nose and in to my gut. Its having a rest. I still ache but not so bad. Soon I start eating so I go back to school for a few half-days a week.
The pain comes back. The steroid doses increase. I get fatter in the face. The other boys take the piss. My stomach hurts and spit is pouring from my mouth again.

I'm 14 years old and the drugs are going to make me blind. 'Its all part of the package' I console my crying mother with. I have had enough of being sick. I can't jump. My legs won't let me. My specialist hands me over to surgeon on a platter. Its time. My specialist gives up and I give in. I'm fourteen years old and my colon is being extracted from my belly. The incision is 8 inches long. The day after the operation I am taken off all medication. I feel better. The pain is different. It hurts like hell but this pain will heal. I go home and stand in front of the bathroom mirror and cry for my loss. My new scars and my new challenges.

I'm 17 years old. My parents throw my bags out in to the street. I follow and don't look back. My bag leaks most nights, the nurses give up on me. Its my fault they say. I need to see a psychiatrist they say. i see one. He says I'm fine. He wants to see my parents regularly. The nurses cannot find a solution to the leaking bags so they give up. I manage. Damage limitation. I become acutely aware of the location of toilets. I live with mildly controlled incontinence. Most nights I wake in a pool of shit. its not my fault. I wake myself every 4 hours and I carry spare clothing everywhere. Things improve but its barely tolerable. I don't want to go under the knife again. I'm too scared. This will do for now.

I'm 19 years old. My parents divorce. I finally have a girlfriend. My stoma is the magic compass on my journey for love. I go to Greece for 2 weeks. I go to Greece for 6 weeks. The cataracts have disappeared.

I'm 20 years old. I graduate from University. I see a surgeon and he sends me for tests. They put a purple balloon up my arse and inflate it with water. Fun. It hurts with 15ml. The surgeon says no-way. The first surgeon said this would be temporary. This guy pisses me off but I accept this is how things will be and just carry on living.

I'm 21. I'm scuba diving in Thailand.

I'm 24 years old. We are married and our first baby is born.

I'm 25. I'm tired. I am tired with the lack of sleep, but worse - the blood I pass from my rear end is increasing in frequency. I eventually go to see a Gastro doctor who says I will need to get rid of my rectum they left me otherwise it could become cancerous. I need to face my surgical fears but I'm not ready. The prospect of surgery is too terrifying so I ignore the problem and hope it will go away. Denial.

I'm 26. The surgeon says that a risk is that I could lose erectile function. I miss the next appointment.

I'm 27. Our second child is born at the most inconvenient time. Or rather my business is taking off and about to go bust. I can't see the wood for the trees. Workaholism is almost vanquished but I need to go bust first.

I'm 28. I stand when he walks in to the room. The surgeon says he can put me back together. I can read his face. It says: You shouldn't have had to endure what you have done.

I'm 29. Waiting for a convenient time to undertake the most selfish act of risking my life. It doesn't arrive.

I'm 30. I realise there is never a convenient time. I sign a piece of paper that lists everything that can go wrong. Its a two step procedure. It says I could die. I could die. My heart is pounding. I press ahead. I'm not going to die. Not yet. This is just a test. I train. I get fitter than ever. My diet is the best its ever been. I start to glow.

I am scared. I am sitting on the grass, breathing deeply. Tomorrow is the day. Today is the day. I kiss my children good bye. I kiss my wife. I touch the walls of my house. I'm ready.

4 weeks ago I am laying in a hospital bed. All the expected tubes are there with me. 32 staples keep me sealed. It hurts. Like hell. I am crying in pain.

But I am smiling.

Date for Surgery

Wow. The universe rewards action.

I have a date for the first stage of pouch surgery, end of May this year.

This seems unreal to me. Its less than 2 months away and I am excited and scared. Preparation is in full swing and I promise to post about my mental preparation in the next couple of days.

Thanks for reading.

Physical Preparation

There is no doubt that any kind of surgery is a major test of physical endurance.

My surgeon was partly right, 'don't smoke' is very good advice. If you smoke I think your a pretty stupid person, you must hate your life as its a fact it will shorten it. If you smoke and you are expecting an operation you are a complete idiot. Smoking increases the chances of complications – simply if you smoke and don't quit long before an operation you could die. Smoking messes with lung function during and after anaesthetic. A smoker has a much higher chance of developing pneumonia after surgery than a non-smoker. Needless to say it, I don't smoke.

There are other things I am doing to prepare myself for pouch surgery. I've been in remission from Crohns Disesase since my subtotal colectomy 16 years ago so my body is in fairly good shape but I want to give myself the best chance at overcoming the odds. If you are not already aware pouch surgery does not have an excellent success rate for Crohns suffers and some surgeons point blank refuse to even discuss the idea. So what am I doing? Physical preparation involves two main areas: Fitness and Diet.

Fitness

The fitter my body the better the chance I have to get through the surgery successfully. I intend to strengthen my muscles and cardio-vascular system. The better these are the faster I hope my recovery will be. I would ideally like to limit my down time so I can get back to being with my family and moving my business forward. By increasing my level of fitness my heart will be stronger and this should mean I require less oxygen. There is also the added benefit of boosting my immune system and keeping my endorphins at a nice level to bat away negative state of mind.

I started my self prescribed regime of swimming daily at the local pool. Its two miles each way so I'm walking the distance at a brisk pace. On Tuesday I swam 10 lengths at a leisurely pace in the slow lane (remember this is not a race, its a marathon.). On Wednesday I swam 12 lengths and felt quite puffed at the end of that session. Today was a different story that I will go in to more detail on my post about Mental Preparation, anyway I swam 10 lengths at a racing pace in about 8 minutes. Daily my stamina is improving and as I type this I feel I'm already using more of my lung capacity. I seem to be a little more efficient working to!

I also do full contact martial arts for 2 hours on a weekly basis. It involves warming up, conditioning, sparring and some Qi Gong (http://en.wikipedia.org/wiki/Qigong) at the end for relaxation and breathing. Its a good workout and great fun. Over the years its improved my confidence and if someone goes to hit me in the abdomen I will break their arm in 5 places before they make contact . Of course I would never do that but i'm not so flinchy and paranoid about abominal and stoma injury as I used to be. I realise I will have to take a break from this for perhaps a year after surgery which is fine so I will do something more sedate like Tai Chi - which I would strongly recommend to anyone with IBD.

Mid morning I do some light anaerobic exercise. To begin with 2 repetitions of 10 pushups – I do these quite slowly to get the most from them (youtube has some decent personal trainers: http://www.youtube.com/watch?v=8fCQsxzsLH4) These work on my core strength aswell as my arms and shoulder muscle groups. Some pull-ups and 30 crunches. If you don't already know sit-ups can be damaging to your back, crunches work on a group of abdominal muscles, I'm not bothered about having a 6 pack but I am enjoying doing them as I know it will be quite a while after the op before I will be able to do them again.

I'm walking everywhere I can and at the weekend I took my eldest for an hour walk to explain the operation and what to expect but that segues in to practical preparation and I want to talk a little about diet right now.

Diet

I remember how ill I was 16 years ago, malnourished, in pain. I was seriously lacking the fuel to a speedy recovery. I was doped up with 60mg of prednisolone daily. My scar actually opened up after the nurses removed the staples which was pretty traumatic! My body just didn't have the bits required to nit the skin back together.

This time its different. Night and Day. My diet is 'balanced', well as balanced as a diet can be for an ileostomist, after 16 years of testing I know the things that don't agree with me. As i'm building up muscles density i'm consuming more protein than usual – normally this will be a lean chicken breast or some fresh fish. I am looking in to Carbo-loading (http://en.wikipedia.org/wiki/Carbohydrate_loading) for the week prior to each of the operations. I expect I will fast a day before surgery and it will be a couple of days before my bowels reactivate after the shock of the surgery puts them in to stasis. It'll mean my body will have a bank of reserves to call on to help with healing and also so I don't feel too ill afterwards.

Calorie Restriction

I mentioned fasting, which is a little something I discovered by accident after a few bouts of stomach bugs that I have experienced over the years. The week immediately after the stomach bugs I noticed (we see these things) that my digestion improved and my energy levels were higher. I experimented with just not eating for 24 hours and noticed the same results. For the past 6 months I have fasted on a monthly basis, in this time I have noticed skin conditions clear up and colds seem to be much less of a problem, having a child at school means more germs coming home. I've batted away colds within 1-2 days. From research I have done CR (Calorie Restriction) is a proven method for improving health and some research states that it actually has life extending properties. I am planning on intermittent fasting on a fortnightly basis. During fasts I consume water continuously and recently been lacing it with a couple of teaspoons of Aloe Vera juice which has a cleansing effect. I view fasts as giving my bowel a chance to rest and recuperate. More information here: http://en.wikipedia.org/wiki/Calorie_restriction

Sleep
Rest and recuperation is so important, I realise this after being a recovered workaholic. I am being disciplined about going to bed when I feel tired and (everyone look away now) in the day I take a nap after lunch. I awake feeling energized but a little guilty. If this were another county it would be called a siesta but here its 'slacking'. Its healthier than a cup of Starbucks and cheaper too!

Water

About 65% of the human body is made up of the stuff. Its hard work keeping hydrated as an ileostomist. From those stays in hospitals after seriously dehydrating bugs and a nice dosage of a litre of intravenous re hydrating saline solution I know i've been lacking in this area for years. I recall the nurses telling my mum to give me a drink whenever I felt thirsty, which was bad advice. Thirst is a sign of dehydration. Most people in a low level state of dehydration. I'm carrying a 75cl bottle everywhere, I get through 2-3 of these a day at the moment. I seem to be visiting the toilet to pee it out more frequently (lets call this toilet endurance) and the colour of my urine is healthy ie clear. Somewhere it says you should drink 2 litres a day. I am happy with my 1.5 litres of water. A glass of orange juice in the morning and the all the fresh fruit and vegetables I eat I am satisfied with my current hydration levels. Skin problems (dry skin) and nasal congestion seem to be clearing up already.

Kegels

Thanks to the wonderful people in the ia forum I learned that these exercises of my pubococcygeus muscles which will give me more control when it comes to the time for the 'go-live' date of my pouch. I have the jump on advice I will be given after the surgery so intend to build these muscles now. http://en.wikipedia.org/wiki/Kegels

A healthy diet, a healthy body, a stronger immune system - these are all things I am aiming for to achieve my goal. I do not take these well days for granted. I remember the time when the healthy days were scattered few and far between the swamp of sick days/weeks/months/years. If you are reading this and are not in a fit state to work on these aspects of preparation like me, don't worry. Its better to under-achieve than not achieve at all.

My next post I will cover my mental preparation for surgery.

Preparation for Pouch Surgery

The fact that I have a notice period before surgery puts me at much greater advantage than someone who has to undergo an emergency operation. I did ask the surgeon what should I do to prepare and all they could suggest was 'just don't smoke'. I don't smoke but I do realise that I am in a good position to prepare for a major assault to my body. Over the next three posts I will go in to detail about what I intend to/am doing to prepare myself – the physical, mental and practical things that I hope will stack the odds in my favor for a speedy recovery.

The Next Step

Today is the day after I went to see my surgeon.

I am always on my guard when I see these people, they heal through cutting. Everytime I have ever met a surgeon there is always mention of cutting me open for some reason or other.

I hate 21st century drive by care provided to adults in the NHS, coupled with the fact I spent quite some time in hospital as a child I have kept it at arms length unless completely necessary. I have been crohns and medication free since my sub-total colectomy at 14 years old.

The idea of a 'reversal' was rebutted 10 years ago though I had the promise from my original surgeon that the ileostomy was temporary. In this time I got on with my life shared my secret with a very special woman, had children and moved to a new part of the country. Moving gave me a new gastroenterologist whose concern was to get rid of my rectum due to the cancer risk. It wasn't until I was referred to a new surgeon to discuss this when the possibility of an ileoanal anastamosis became an option. Any surgery at the time was not convenient. I had a kid - wanted more (the risk that surgery could mess with erectile nerves) responsibilities, a business.

I chickened out and went AWOL from the NHS again.

Two years later I realised there would never be a convenient time. Once I made the decision to proceed I discussed it with my wife and she typically said she's help me through it. She was rightly concerned with the practical implications but thankfully agreed we'd figure it out. I contacted my consultant's secretary in January and received an appointment a day later in the post for 5 months time.

I know clinics can be over-booked by secretaries at their discretion. I telephoned and convinced her it was necessary to see the consultant as soon as possible , the rectum came in handy here, she decided to overbook a clinic and the appointment date was brought forward 2 months.

The meeting with the surgeon was very business like. I explained I understood the risks and have done plenty of research. 40% of this sort of surgery with people with Crohns succeeds, that is the statistic I intend to help. I asked how many procedures this surgeon does, enough to put themselves in the premier league. I was told that we will go the slow route - formation of the pouch and a loop ileostomy and monitor the healing closely, test the pouch is water-tight then 3-6 months later connect it all together. I will be in hospital for a week after the surgery (hopefully less if I can help it).

I signed the consent form - which to me felt like a contract with myself to commit to going ahead with this. The risks were explained in detail but writing this now I realise that they never cover the potential benefits. Its a system built around limiting liability for the NHS. In order to focus on the positives I will also highlight the potential benefits of proceeding.

The exact procedure as stated on the form says:

Renewal of rectum, formation of ileoanal pouch, ileostomy for Crohns disease.

Intended benefits: to restore bowel

Frequently occurring risks:
Death <10%, Pouch Failure <10%, Pouchitis, Crohns Reactivation, Leak from join in bowel, bowel
blockage due to adhesions, fistula, impotence, urinary problems, blood clots in legs/lungs, pneumonia.

Well, that's pretty comprehensive and frightening but lets take a look at the potential benefits:

Rid of a stoma that was stupidly sited above my waist as the stoma nurse who sited it believe I would grow in to it!

No more bags

Less or no more accidents - I have about 3 per week during the daytime and about another 3 at night.

Ability to wear clothes properly

Ability to go swimming more frequently

Ability to have a bath without worrying about leakages

Ability to stay away from home without worrying about accidents

Not having to do so much laundry

I could add reams to this list but quite simply I want a chance at getting shot of this bag. I do not hate it, it has allowed me to get on with living. I despise waking in a pool of runny poo. I owe it to myself to try and sort this out. If it doesn't work, fine. At least I will have tried.

I have not had a date for the surgery yet but I expect it to be some time in the summer.

My Story

I have had an ileostomy for 16 years. It rescued me from 3 years of turmoil, pain and medication due to Crohns Disease. I am 30 now. Have a wife and two beautiful children. This is the most selfish act that I will ever make but it is a dream I intend to fulfill - I have started the ball rolling to get rid of the ill fated rectum, rid of this blasted stoma and restore what's left of my bowel.

I have read the research papers and understand the risks, my mind is made up. One day soon I will break wind in the right and proper way.

I hope to record my story here as life unfolds.