Day 17. Four days ago was a momentous occasion for me, it marked the day that my dressing was removed from the last surgery. Its not just the fact that an oversized plaster was taken off, its that this was the first time in almost 17 years that area of my abdomen was uncovered. The scar is still healing and looks like a stab wound, with a dip. There is a circle about the size of a CD where the hair is starting to grow back, although a lot thinner than the surrounding hair and the skin looks very pale. Its very sensitive and strange having this area of skin exposed, I am acutely aware of things brushing against it.
Besides that milestone I'm still having to take one day at a time and some days taking one hour at a time. Overall I'd say there is definitely an incremental improvement but I can't take the periods of respite for the ass burning sessions for granted because when I do it returns with a vengeance. If you've not experienced the flaming of 'butt burn' that J-pouchers can endure let me tell you it is more than unpleasant, its like trying to shit flaming volcanic ash mixed with battery acid. The terrifying thing is when you start and reflexively stop going but know with looming dread that you have to carry on and get the rest out. I've experienced pain with the Crohns and the various surgeries, scopes, needles, dislocated a shoulder, been hit over the head by a kid with a spanner and hit by a car but a burning ring piece takes pain to a whole new level. Its eye-popping. I suppose the fact that its my bumhole thats on fire sounds quite amusing and it is a ludicrously cruel joke that out of the whole kit and kaboodle its the most painful part and most expensive price to pay. But i'm willing to pay it.
I cope with the discomfort in several ways. Hot baths with bicarbinate of soda help, anesthetic creams, deep breathing and overloading my senses with TV, internet, music and writing help take my mind of it. The trick is to try and get enough time inbetween trips to the toilet so my skin can heal and lamp on the barrier cream. I'm avoiding the things that cause 'butt burn' and the sight of orange juice fills me with dread.
Waking up at night is having an effect on my ability to concentrate in the day time and I have not been able to do any work yet. Financially this is a difficult time, I am self-employed and my income is directly linked to my productivity. I knew this was going to be another one of the costs of going ahead with this surgery and realise the risks I have taken. There is no point worrying as that is not going to help me - this was one of the impossible decisions I had to make, the fact that there is never a convenient time to do these things, to go for what we want. I am taking big risks but I am confident everything will work out in the end.
Thursday, 6 November 2008
Wednesday, 29 October 2008
Update 3
Day 10. Overall I think the last couple of days have been a little easier but you know how hard it can be and I have still have my fair share of exhausting toilet sessions that have made me virtually pass out with tiredness as soon as I get back in to bed. Did I mention the hallucinations? Yes I have been hearing voices - for fun, two nights ago I decided to have a chat with myself and ended up having a conversation with a voice which I realised was my subconscious. It started off being angry at me for putting 'me' in this situation:
'I don't know what's going on, I'm trying everything but we're just not wired for this'.
'I know' I said, 'but this is what we want, I knew it wasn't going to be easy'
'I've got to figure this out but it hurts so much, I just can't concentrate, you need to calm down so I can work this out. That will help me'.
'Okay', I said 'I can do that...Am I going mad? I'm talking myself.'
'You just need to get some sleep. Try and relax, I will wake you up so up so you don't have an accident, I promise.'
'Thank you'.
I thought I'd been managing with the broken sleep quite well, I don't wake up feeling tired in the morning but I have waves of tiredness the bowl me over, flopped out like a Memphis bum.
I have been eating fairly regularly, mashed potato with salmon, risotto - which is new and wonderous discovery, porridge with rice milk and banana's. Nothing exciting. Avoiding sugar like the acid knife plague that it would visit on my sore bum hole. Its enough to experience this sensation once to neutralise any sweet tooth I had. Its not discipline its fear that prevents me from encountering that particular experience again. Ouch. I am interested to know if something like Agave syrup can be used as a substitute, will I dare risk it?
I think a rhythm is gradually revealing itself. I stop eating at about 8pm to see if I can get some less interrupted sleep at night. Monday night I seemed to go between 2.5 to 3 hours between waking up and had almost a 3 hour nap in the afternoon yesterday. Last night was exceptional but painful. My first sleep was 3 hours 50 minutes but I woke up in a lot of pain, my pouch at its maximum pressure, I had to run to the toilet. I next got 2 hours sleep followed by another dash at maximum pressure. I awoke again at 9.40am - which is the longest I have slept in, I must be really tired. That was a record breaking intermission of 4 hours 20! and hurt the most, some of what I passed was very watery blood - I think my pouch had a good stretching as today any regularity has gone out the window. Gaps between toilet visits have ranged between 30 minutes and 3 hours 50 after I had another nap whilst the girls went to see High School Musical 3, maybe I could have gone after all? Anyhow, after that long break I went another 3 times with 20 to 30 minute gaps. This left me very sore.
I realised that I have gone the longest period without opiate based pain killers (Oramorph, Codeine). This means my bowel is working at its natural ryhthm. I am committed to try and manage without chemicals to alter my natural processes. This is not out of bloodymindedness. My rationale is to eliminate as many chemicals in my system and give my body time to adjust and accommodate the new anatomy, perhaps evolve to its own mechanisms which slow down and keep me away from the toilet for a reasonable period. I know that the pouch will enlarge and the tissues will alter, my brain will recalibrate to the new set up and my muscles and skin will strengthen to cope with the additional loads. Its just a matter of time.
I work on my own and can handle some solitide, even though the children are on half term its a pretty lonely time. I am spending it watching DVDs (some for the 3rd time) reading blogs and writing. I keep intending to write about my difficult experience at hospital last week and may even make a complaint about some of the bad practice I was victim to but I keep finding excuses to revisit it in my mind - sleep is one of the best reasons :)
We had told a few of our friends about this last operation (I have been quite secretive about all this until now) and thought that my wife might get a little support this time around but no help has been forthcoming, perhaps they are waiting to be asked or feel uncomfortable or are reluctant because we waited so long to say anything or are simply to busy to offer. Whatever it is, she's completely exhausted and spent the last two evenings in tears. I don't have the strength yet to give her the physical support and the best I can muster is a hug. It must be very difficult for her to see me like this for the second time in a year.
It will be worth it in the end.
'I don't know what's going on, I'm trying everything but we're just not wired for this'.
'I know' I said, 'but this is what we want, I knew it wasn't going to be easy'
'I've got to figure this out but it hurts so much, I just can't concentrate, you need to calm down so I can work this out. That will help me'.
'Okay', I said 'I can do that...Am I going mad? I'm talking myself.'
'You just need to get some sleep. Try and relax, I will wake you up so up so you don't have an accident, I promise.'
'Thank you'.
I thought I'd been managing with the broken sleep quite well, I don't wake up feeling tired in the morning but I have waves of tiredness the bowl me over, flopped out like a Memphis bum.
I have been eating fairly regularly, mashed potato with salmon, risotto - which is new and wonderous discovery, porridge with rice milk and banana's. Nothing exciting. Avoiding sugar like the acid knife plague that it would visit on my sore bum hole. Its enough to experience this sensation once to neutralise any sweet tooth I had. Its not discipline its fear that prevents me from encountering that particular experience again. Ouch. I am interested to know if something like Agave syrup can be used as a substitute, will I dare risk it?
I think a rhythm is gradually revealing itself. I stop eating at about 8pm to see if I can get some less interrupted sleep at night. Monday night I seemed to go between 2.5 to 3 hours between waking up and had almost a 3 hour nap in the afternoon yesterday. Last night was exceptional but painful. My first sleep was 3 hours 50 minutes but I woke up in a lot of pain, my pouch at its maximum pressure, I had to run to the toilet. I next got 2 hours sleep followed by another dash at maximum pressure. I awoke again at 9.40am - which is the longest I have slept in, I must be really tired. That was a record breaking intermission of 4 hours 20! and hurt the most, some of what I passed was very watery blood - I think my pouch had a good stretching as today any regularity has gone out the window. Gaps between toilet visits have ranged between 30 minutes and 3 hours 50 after I had another nap whilst the girls went to see High School Musical 3, maybe I could have gone after all? Anyhow, after that long break I went another 3 times with 20 to 30 minute gaps. This left me very sore.
I realised that I have gone the longest period without opiate based pain killers (Oramorph, Codeine). This means my bowel is working at its natural ryhthm. I am committed to try and manage without chemicals to alter my natural processes. This is not out of bloodymindedness. My rationale is to eliminate as many chemicals in my system and give my body time to adjust and accommodate the new anatomy, perhaps evolve to its own mechanisms which slow down and keep me away from the toilet for a reasonable period. I know that the pouch will enlarge and the tissues will alter, my brain will recalibrate to the new set up and my muscles and skin will strengthen to cope with the additional loads. Its just a matter of time.
I work on my own and can handle some solitide, even though the children are on half term its a pretty lonely time. I am spending it watching DVDs (some for the 3rd time) reading blogs and writing. I keep intending to write about my difficult experience at hospital last week and may even make a complaint about some of the bad practice I was victim to but I keep finding excuses to revisit it in my mind - sleep is one of the best reasons :)
We had told a few of our friends about this last operation (I have been quite secretive about all this until now) and thought that my wife might get a little support this time around but no help has been forthcoming, perhaps they are waiting to be asked or feel uncomfortable or are reluctant because we waited so long to say anything or are simply to busy to offer. Whatever it is, she's completely exhausted and spent the last two evenings in tears. I don't have the strength yet to give her the physical support and the best I can muster is a hug. It must be very difficult for her to see me like this for the second time in a year.
It will be worth it in the end.
Monday, 27 October 2008
Update 2
"There is something to be learned from a rainstorm. When meeting with a sudden shower, you try not to get wet and run quickly along the road. But doing such things as passing under the eaves of houses, you still get wet. When you are resolved from the beginning, you will not be perplexed, though you still get the same soaking."
Hagakure, The Way of the Samurai
Last night I managed to go 4, 3.5 and 3 hours between toilet trips, that's almost double what I achieved yesterday. I am pleased as punch as I feel a tiny bit more human today. Each trip to the toilet was still a surrender session of the convulsing, spasming pain but I am starting to understand what is going on and trying to communicate that back to my body through visualisation. I know I am making good progress.
I realised the aim of the game is to space out periods between bowel movements and for the past 17 odd years my guts have had the freedom to let loose through an end ileostomy. My theory was that as my small bowel has had the same time to adapt which should put me at an advantage over most j-pouchers, however the output is still more liquid than before - I put that down to the fact that the bowel has undergone trauma and is still in a recovery faze. I also understand that the length of bowel between the loop ileostomy and the pouch needs to recover its muscle tone, lost due to the 5 months period of inactivity between surgeries.
My muscles and brain need to re-calibrate and fine tune for all the new parameters which is why its such a confusing experience when going to the toilet. Most of the time when I sit on the loo I feel like my sphincters want to pass out the pouch - they need to get used to that new weight and tension, plus the mucosa needs to adapt to the new ranges of acidity coming through.
In addition to all this my bladder seems to be in a little shock of its own probably due to the local anatomical stress and confusion on me trying to control the muscles - I have pissed on the floor several times when one of the belly spasms has forced out a against my will. Also the healing incision of where my stoma was wants in on the act as it feels somehow still involved in the whole show of ejecting waste from my body.
Its all a bit of a puzzle that I know my subconscious will figure out and I hope by trying to have some rational conscious thought processes like writing this may help out in some way - if not, just supporting evidence in making me sound like a loon.
So I went 4 hours between bowel movements in the night! Almost a 200% improvement in 3 days! I am eating 4-5 small portions of bland food in the day up until my last snack - porridge and banana which the last mouth full passed my lips at 8:30pm last night. I am sipping, not glugging drinks down with the theory that swallowing large boluses of food or drink stimulate peristalsis. I am not wanting to stop my bowel, just slow it down. I am lacing all water with Aloe Vera juice which I feel is cleansing and encouraging healing at the surgical sites and quite possibly soothing the anal mucosa that is being acid burned on each toilet trip of terror.
I do not intend on using lomotil or any other type of laxative to slow things up however I am still taking pain relief in the form of opiates which may have a contributing factor on my success but the dosage has not increased since coming home, in fact it has decreased.
The acid burn does not seem present during the night and Shells advice about using Sudocream to protect my skin is doing the trick if I put it on before I stagger to the toilet. The last time I used that stuff was when my daughters were babies - my wife used to say I painted it on them like a pair of knickers! I just didn't want any risk of them getting sore, any discomfort that they experienced would break my heart and it is with this mindset that I go about taking meticulous care of my own rear's skin. So far no broken skin, just strained muscles and soreness. I am overcoming any soreness with Lidocaine (Benzocaine 3%) but only when absolutely necessary. I wipe with Pampers Aloe Vera baby wipes (i am getting through a pack a day!) and dab dry with the most expensive Andrex toilet paper I have ever seen - maybe I can send for a free puppy or something.
Rather than going backwards and forwards to the toilet every five minutes, when I go I stay there for 20-30 minutes. I have found it easier to expel wind if I place my hands flat on the ground and stand up from the seat. The air bubbles rise from my pouch and I sit down again to release them, occasionally I release the air with my ass in the air but this is a bit of an acrobatic trick as I need to do this on one hand whilst the other prevents any errant spray of liquid with a clutch of toilet paper. So far by doing this I have not experienced any wind pains. Hey, its better sticking my arse in the air than kneeling at the throne. The only thing is, the cost of this is that it puts pressure on my incision which hurts like hell too. One pain in exchange for another.
I am trying really hard to hold it together. I only cried once in the bath last night and that was when I admitted to my wife that I considered becoming a heroin addict to deal with all the pain - a surreal thing for me to say looking back but on virtually no sleep for a week and all the other stuff that I tolerated at hospital it kind of makes sense. I only need to look down and see my bag free belly to know its all going to be worth it. Today I expended a little energy to put a shirt and trousers on and wear them properly - not above my waist and shirt hanging out as I did to conceal my bag in the past but tucked in and with a proper waist line. I stood and stared at my new appearance in the mirror and felt comfortable physically and mentally - in my reflection, standing slightly taller than before, I could see myself at long last.
I know when I am calm, contented and relaxed I can feel my wounds begin to heal. When I am calm I am able to deal with the trip to the toilet better and seem to need to spend less time in there waiting for all the spasming to stop. Its important that there is no one outside the bathroom or even upstairs making noise. If I calm myself I can feel my body slow down which is exactly what I want it to do. Last night I did some deep breathing before I drifted off to sleep, instead of simply conking out like I have been doing for the past week. My first trip to the toilet at 12:30 after 4 hours sleep was also calm and over in 10 minutes. I think continual calmness is one of the key ingredients to get through this as painlessly as possible. I am going to start and finish the day tomorrow from this plateau rather than the spikey levels of stress and terror. Perhaps I can win this without fighting it.
Hagakure, The Way of the Samurai
Last night I managed to go 4, 3.5 and 3 hours between toilet trips, that's almost double what I achieved yesterday. I am pleased as punch as I feel a tiny bit more human today. Each trip to the toilet was still a surrender session of the convulsing, spasming pain but I am starting to understand what is going on and trying to communicate that back to my body through visualisation. I know I am making good progress.
I realised the aim of the game is to space out periods between bowel movements and for the past 17 odd years my guts have had the freedom to let loose through an end ileostomy. My theory was that as my small bowel has had the same time to adapt which should put me at an advantage over most j-pouchers, however the output is still more liquid than before - I put that down to the fact that the bowel has undergone trauma and is still in a recovery faze. I also understand that the length of bowel between the loop ileostomy and the pouch needs to recover its muscle tone, lost due to the 5 months period of inactivity between surgeries.
My muscles and brain need to re-calibrate and fine tune for all the new parameters which is why its such a confusing experience when going to the toilet. Most of the time when I sit on the loo I feel like my sphincters want to pass out the pouch - they need to get used to that new weight and tension, plus the mucosa needs to adapt to the new ranges of acidity coming through.
In addition to all this my bladder seems to be in a little shock of its own probably due to the local anatomical stress and confusion on me trying to control the muscles - I have pissed on the floor several times when one of the belly spasms has forced out a against my will. Also the healing incision of where my stoma was wants in on the act as it feels somehow still involved in the whole show of ejecting waste from my body.
Its all a bit of a puzzle that I know my subconscious will figure out and I hope by trying to have some rational conscious thought processes like writing this may help out in some way - if not, just supporting evidence in making me sound like a loon.
So I went 4 hours between bowel movements in the night! Almost a 200% improvement in 3 days! I am eating 4-5 small portions of bland food in the day up until my last snack - porridge and banana which the last mouth full passed my lips at 8:30pm last night. I am sipping, not glugging drinks down with the theory that swallowing large boluses of food or drink stimulate peristalsis. I am not wanting to stop my bowel, just slow it down. I am lacing all water with Aloe Vera juice which I feel is cleansing and encouraging healing at the surgical sites and quite possibly soothing the anal mucosa that is being acid burned on each toilet trip of terror.
I do not intend on using lomotil or any other type of laxative to slow things up however I am still taking pain relief in the form of opiates which may have a contributing factor on my success but the dosage has not increased since coming home, in fact it has decreased.
The acid burn does not seem present during the night and Shells advice about using Sudocream to protect my skin is doing the trick if I put it on before I stagger to the toilet. The last time I used that stuff was when my daughters were babies - my wife used to say I painted it on them like a pair of knickers! I just didn't want any risk of them getting sore, any discomfort that they experienced would break my heart and it is with this mindset that I go about taking meticulous care of my own rear's skin. So far no broken skin, just strained muscles and soreness. I am overcoming any soreness with Lidocaine (Benzocaine 3%) but only when absolutely necessary. I wipe with Pampers Aloe Vera baby wipes (i am getting through a pack a day!) and dab dry with the most expensive Andrex toilet paper I have ever seen - maybe I can send for a free puppy or something.
Rather than going backwards and forwards to the toilet every five minutes, when I go I stay there for 20-30 minutes. I have found it easier to expel wind if I place my hands flat on the ground and stand up from the seat. The air bubbles rise from my pouch and I sit down again to release them, occasionally I release the air with my ass in the air but this is a bit of an acrobatic trick as I need to do this on one hand whilst the other prevents any errant spray of liquid with a clutch of toilet paper. So far by doing this I have not experienced any wind pains. Hey, its better sticking my arse in the air than kneeling at the throne. The only thing is, the cost of this is that it puts pressure on my incision which hurts like hell too. One pain in exchange for another.
I am trying really hard to hold it together. I only cried once in the bath last night and that was when I admitted to my wife that I considered becoming a heroin addict to deal with all the pain - a surreal thing for me to say looking back but on virtually no sleep for a week and all the other stuff that I tolerated at hospital it kind of makes sense. I only need to look down and see my bag free belly to know its all going to be worth it. Today I expended a little energy to put a shirt and trousers on and wear them properly - not above my waist and shirt hanging out as I did to conceal my bag in the past but tucked in and with a proper waist line. I stood and stared at my new appearance in the mirror and felt comfortable physically and mentally - in my reflection, standing slightly taller than before, I could see myself at long last.
I know when I am calm, contented and relaxed I can feel my wounds begin to heal. When I am calm I am able to deal with the trip to the toilet better and seem to need to spend less time in there waiting for all the spasming to stop. Its important that there is no one outside the bathroom or even upstairs making noise. If I calm myself I can feel my body slow down which is exactly what I want it to do. Last night I did some deep breathing before I drifted off to sleep, instead of simply conking out like I have been doing for the past week. My first trip to the toilet at 12:30 after 4 hours sleep was also calm and over in 10 minutes. I think continual calmness is one of the key ingredients to get through this as painlessly as possible. I am going to start and finish the day tomorrow from this plateau rather than the spikey levels of stress and terror. Perhaps I can win this without fighting it.
Sunday, 26 October 2008
Update 1
My first night home I was up every hour trying to stay calm in my tired stupor. Going to the toilet is like getting stuck in gear and losing clutch control - because i'm experiencing what feels like passing battery acid passing trough - its just a little difficult to relax! I fear if someone saw me in my bouts in the loo they would think that I am having a convulsion!
The muscles around my stoma were able to have some control or awareness of when waste was passing through. The area left seems still mentally connected to my bowel in that it clenches up when I release the catch and let the flood gates open. Its like a ghost sphincter that is causing me a little strife in the pain it generates in the healing incision. I need to 'de-train' it somehow.
Anyway, I thought the soreness whilst going would improve but either due to the diclofenac (which I have now excluded) or the very watered down lucozade (which I will destroy) made it feel worse than I could have possiby imagined. I keep telling myself this is going to be over soon. I ate at 8pm last night and managed to wake only every two hours, I hope to keep on the same curve of improvement. Tne burning sensation has gone away this morning - I had feared that my bum would become addicted to benzocaine, what a gift that cream is!
Thankfully the advice of prevention is still the one I am living to religiously. Wiping with baby wipes and dabbing with very soft toilet tissue. The Bicarb baths are a treat too. My skin has not broken just very sore. I drank some watered down aloe vera juice last night and that seems to have soothed my bum considerably.
I feel like i'm learning to walk again after all this time, each step is one step forward.
This is hard work.
The muscles around my stoma were able to have some control or awareness of when waste was passing through. The area left seems still mentally connected to my bowel in that it clenches up when I release the catch and let the flood gates open. Its like a ghost sphincter that is causing me a little strife in the pain it generates in the healing incision. I need to 'de-train' it somehow.
Anyway, I thought the soreness whilst going would improve but either due to the diclofenac (which I have now excluded) or the very watered down lucozade (which I will destroy) made it feel worse than I could have possiby imagined. I keep telling myself this is going to be over soon. I ate at 8pm last night and managed to wake only every two hours, I hope to keep on the same curve of improvement. Tne burning sensation has gone away this morning - I had feared that my bum would become addicted to benzocaine, what a gift that cream is!
Thankfully the advice of prevention is still the one I am living to religiously. Wiping with baby wipes and dabbing with very soft toilet tissue. The Bicarb baths are a treat too. My skin has not broken just very sore. I drank some watered down aloe vera juice last night and that seems to have soothed my bum considerably.
I feel like i'm learning to walk again after all this time, each step is one step forward.
This is hard work.
Wednesday, 30 July 2008
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.
Wednesday, 2 July 2008
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.
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.
Tuesday, 8 April 2008
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.
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.
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