1 year later, I made it!

I'm 10 days shy of the anniversary of the first step of my j-pouch surgery. Its been a long and bumpy road but i'm pleased to report that i've finally started to feel like my old self. The strength in my voice has returned, I can spin my kids round in the garden, my diet is expanding ridiculously, I go to the toilet about 6-7 times per 24 hours. I don't take a thing to slow down my bowels and I bought a few pair of tight fitting (sorry no pics :)) jeans for the first time in 17 years! I sometimes get up in the night if I eat too late but often it just wake up at about 5am and just get on with my day earlier than everyone else (I find I get more work done in the couple of hours before the kids get up than the rest of the day!) I've not had any pain medication for several weeks. I still need an afternoon nap (and will use my surgery as an excuse for that for quite some time to come :p). I can do just as many sit-ups and push-ups etc as I could do this time last year and I have started to think creatively for the first time since the kick-in the guts that surgery is.

As a family we are starting to realise the subtle changes to our character that the bag gave. The washing machine is not on all day. I am confident to wear bright clothing (which does no end of good in lifting my spirit). There is nothing to hide, no embarrassing noises (that no-one heard anyway), no kneeling at the toilet. Oh, and I've finally started driving lessons...I used to have accidents when ever I sat up in a car. I'm planning a sky dive as a reward to myself - which I will send a photo of to my surgeon by way of thanks. I intend to enjoy every moment being without a bag, because I bloody earned it.

Physical intimacy with my wife is different and better but that's all i'm going to say about that.

I did consider getting my 10" scar revised but I have decided to keep it. I found the scar from my first op 17 years ago more troubling than the stoma. I realise now that it was because it had come about through a trauma that was inflicted not out of choice but necessity. This new scar was completely my decision and is a mark of my courage and strength to overcome my biggest fears and worries, a battle scar from a fight that I chose. Its part of me. My stoma scar on the other hand kind of makes my abdomen look like its got a double chin so I may get that sorted out...no rush though.

I went swimming in speedo's last week. For me it was a BIG deal. Swimming was always hard to enjoy (though I persisted), getting in and out of the pool, wearing bulky swimming shorts unusually high above my waist line to conceal the bag, communal showers and changing rooms. For the first time I experienced the lack of drag that swim shorts gave me and swam a length in my fastest time ever. I may enter the 2012 Olympics yet (not joking).

I've not experienced pouchitis at all and I don't take any pro-biotics either. Whether its just a matter of time I don't know but I feel its possible that because I don't slow my bowels down the bugs don't have time to grow. In addition I use an enema bottle almost daily, don't touch red meat or dairy and drink lots of water.

I have trouble with tuna (sounds like a good title for a book!) and don't dare go near orange juice (although i've gargled it like a wine taster a couple of times). I only experience butt burn if I forget to slap on the vaseline before going several times. These things are all familiar habits now and seem like no trouble at all.

I feel a bit like a butterfly that spent the winter cocooned in bed and painkillers watching DVD's. With all my new clothes and the glow of health and fitness returning just in time for the summer.

I plan to repay all the love and dedication my wife and children have given me this last year. With no regular income and an uncertain future its been physically and emotionally taxing for everyone. We are thinking about going travelling for several months and taking a break from the hum-drum. Maybe I will see some of you on the next step of our journey.

Thanks for reading me.

Love,

Dan

ps. I do intend to write about my hospital experiences soon so come back in a couple of weeks to see what crap care I had to deal with when I was with the professionals!

Notes After Take-Down

I found some scribbled writings in a notebook today that I've no recollection of making. I reckon must have made them the day after my surgery, I must have been saturated with Morphine at the time.

Mixed amongst the heavy drowsiness and pain relief I can definitely taste the thrill and elation. I have achieved my goal and the view from here is awesome. I did it. I can do anything. I put my mind to it, persisted, paid the price and I am now there, reconnected.

The wait from 7 am to 2:30pm with no food or drink was nothing compared to the 16 years this joke started on. This time around I was less frightened and even more serene. There was another 2 hours waiting in the surgical pre-op room but it was required time to be alone and get in sync with nature. I gazed beyond the window whilst everyone else faced inwards to their fate. I looked out towards the gentle swaying trees and let their mystical rhythm enhance and soothe my anxiety. I stayed confident, standing in my own shoes and eyes clear with glasses [everyone else accepts the rule – wearing clogs and handing over any personal belongings]. They – the nurses – reluctantly shaped around me, the objects represented a microcosm of control that I retained until the last moment, the point at which I handed over my unconscious body to be worked on.

Approaching from my right side and mildly reflecting in the window, my surgeon said – as if we were in mid-conversation continuing on from our last interface “Are you gaining any special insight from out there?”
“Well” I said, “I realise that those trees are another part of myself, they breath for me and I, them”...
“How are you getting on?”
“Good thank you, I am prepared in my mind and i am trying to tell my body what is going to happen to it is not shocked too much”
“Very good. You are definitely the most well prepared patient I have ever had and I am confident that is why you recovered so well from the last operation”, “We'll probably use staples as its quicker – I'll put a finger up your bottom to ensure the join we made last time has no narrowing and if so we might not go ahead.”
“I aware of that”, and then I said “have you had a busy morning?”
“The last chap was very hard work, a bit of a mess but we got through it...I won't be long now.” Then he patted me on the shoulder and an electrical current fired off somewhere inside and my confidence quadrupled “I will see you shortly”.

Survival Guide to Hospital: Hacking The Pain Scale

"On a scale of 1-10 how much does it hurt?"

Over the next few posts I'm going to share some of my philosophies that have grown from surviving in Hospital, an institution that has some bad practices that hinder recovery. From the best intentions, systematising care with bureaucracy. Some hospitals have de-evolved in to a place where the default pattern of behaviour breaks the spirit of the positive agents of healing and the sick get needlessly sicker.

The experience of pain is a purely subjective. Medical types have the objective of 'getting the pain under control'. So some smart-alec came up with a robotic flow-charted method of dealing with. If you are in pain they ask you 'on a scale of one to ten how bad is your pain?' 1 being negligible 10 being intolerable and it is according to your response what effort is expended to relieve you of this pain.

Every surgical incision I have experienced is excruciatingly painful when not covered sufficiently with pain relief medication. I have come to the conclusion that the question is flawed. It implies that pain at some level is acceptable, a tolerable level of pain should not be the objective, the objective should be to relieve all pain.

The question should be 'Are you in pain?' If yes, administer relief. Ask the question again and keep repeating this question until the answer is 'no' then observe and ask at regular intervals. If the aim is to relieve pain, a response of 1, 2 or 5 is the equivalent of a 'yes' and should be treated.

The present system does not work, it is founded on a subliminal philosophy that some suffering is good for the soul. My hack for this stupid system is you modify your answer to 'the question' to '9' or '10'. Pain is unique to you, a number is no substitute to communicate your suffering. Its not brave to suffer, its stupid if it can be avoided. Meditation and other things can work, I've used TENS and meditation successfully , I am capable of tolerating pain and have spent time in the past suffering unnecessarily due to various condition that taught 'some pain is good'. Its not, its a waste of energy, that could be used towards healing. You must get pain under control and the fastest way in the West is with medication.

Convenience of the carer should not take precedence to needs of the patient.

It is my experience that the lower the score you give the less effort is made to reduce your pain to nothing. Low numbers of pain are 'acceptable' to some hospital staff and the experience of treating in not standardised so giving a 5 or 6 to one nurse may not be treated the same way as another nurse.

I have been in severe pain, visibly trembling, sweating and pale yet still asked 'on a scale of one to ten, how bad is your pain?'. Robotic procedures dehumanise people in to caring automatons obsessed with adjusting their responses to a 'pain-scale'.

Its possible the attending carer might have no idea of the history of your admission, no idea of the cause of the pain and only concerned about the added amount of inconvenience required to obtain the appropriate medication. Fight them. If all they have as reference to your internal condition is a number, give them one that will get you the response you need.

Update 5

Day 79!

What can i say, the last couple of months have literally been a pain in the ass to get through but i made it.

The cumulative effect of me going going going leaned me towards consuming codeine (a codeine and paracetamol ready made cocktail of a capsule to be precise) whose welcomed side effect slowed things in the digestive and peristaltic department to a crawl resulting in giving my poor asshole a break for a few hours in between. The other side-effect which crawled over me as slow as the saga of the alien costume (see spiderman) caused my mind to fog over and for my brain to become addicted to the mild high that the 1 gram paracetamol and 60 mg of codeine blend. I would not say addicted in the crack addict do anything way, more so as a nice cup of coffee or a first cigarette of the day. Initially I honestly took it for pain relief, being that it was still only 3 weeks after surgery – the gas build up in my pouch in the morning and various tissue and strained sinews from all the nocturnal straining of the going going going the two red and white Akira style capsules really hit the bulls-eye of pain and put me in a dreamy happy state. I'd run out of codeine alone and was too apathetic to make any effort to replace the stock besides the Co-codamol side-effect (no doubt because I was taking the maximum dose) slowed things down so I could effectively get 5 hours uninterrupted sleep. You have to realise that these decisions were clearly taken in an irrational state of exhaustion.

Since take-down it has been my modus operandi to decipher the alchemical algorithm - the right combination of foods, distance between taking on fluids, the right creams, the best paper, the best side to sleep, what each new sensation meant; that creates the maximum quality of life from my new anatomical layout - all without the use of medication. Its much more complicated and sensitive to minute adjustments than I predicted. I had not realised it was going to be such an assault course (assault being largely upon my poor asshole by digestive enzymes). I had read about people that managed by diet alone, I do not let to have synthetic chemicals pumping round my body and hoped to achieve the same. I was initially in denial that I was taking the red and whites to slow things down and pressed on with experimenting with foods and juices. After about five days I just didn't give a fuck. After a week I wasn't even bothering to get dressed in the day and became a disconnected zombie just waiting for the next 6 hours to roll by so I could get that 30 minute buzz in my chest off the opioid. From going out for a walk a couple of times a day I found the cold to much of a threat and retired indoors to chaining DVDs and uncharacteristically watching as much crap TV as one human being can tolerate. Hence the lack of updates to this blog.

Still in denial that I was taking the drugs for their side-effect, I continued to take them for just that.

I couldn't really see any patterns in the behaviour of my system after a couple of weeks, my blood was saturated at a level that there was nothing to discern. Sometimes I needed to strain to evacuate my pouch, sometimes tears rolled down my cheeks at 3am and I jumped in an out of a bath every 30 minutes.

I was quite friendly for about 2 hours a day spliced in to 30 minute chunks splintered throughout the day but for the rest of the time you'd be lucky to get even a grunt out of me. This had a desperate affect on my already rung-out wife who concluded that my decent in to her interpretation of assholedom was due to something she had done or neglected to do which spiralled in to one sided complaining “I don't understand what I have done wrong” then a two-sided lackluster and ultimately anti-climatic argument caused by my exiting stage right to the TV or the toilet – on one or two occasions when I didn't actually need to go. The usual equilibrium of our relationship is polar opposite. But the comfortable numbness was very inviting and after the lot of the recent physical discomfort and mental hurdles it was nice...For a while. The balance of 'good days and bad days' tilted towards the bad until I began going backwards. I was being gung-ho with new foods during this period (ooh ketchup...oh no mango juice?). I had to roll things back to a day one diet. I had porridge for Christmas lunch.

New years day was a turning point. I dragged myself up and accompanied my wife and kids to the cinema. Another corner. I was prepared in my mind that this was the time to kick the habit and I was prepared to accept the fact that I was going to take Loperamide at least for a time to recover some normality to life and start earning some money and start digging out of this financial hole that I have kept at looming distance for as long as possible. Also my stock of capsules was running low so a trip out to the doctor was necessary.

My new GP, A young ex-military Doctor, bluffed his way through my appointment nodding and nodding, I left thinking I could have talked him in to prescribing Morphine if I had said it is part of my treatment. I left with a script for a hundred caps of Loperamide, some Paracetamol, Codeine (for when the gas pain is too bad) – he regurgitated the pain-ladder bullshit to me which I politely nodded though and when I asked for some industrial strength topical anaesthetic cream his was more than happy to write up EMLA which is the stuff they put on kids (and adults in five star anaesthetic suites where one of the staffs main axioms is patient comfort) to numb their skin before inserting a big hollow needle and canulating them. “I don't like using it for canulation” he said, “it takes too long too work”. “Well far be it for your convenience to be outweighed by a patients comfort” I said. He just continued talking, it was apparent that my opinion had no value as he looked at the clock on his screen confirming my statement entirely. I feel completely out of tune with alopathic medicine now, surgery was a necessity, emergency treatments fine but healthy living is the way i'm going to keep as far away from these people. EMLA is a pain/pleasure drug. On application the Hydrogen Peroxide burns harder than the discomfort it is treating but in 42 seconds (i've counted) you don't care.

My motivation was re-ignited when the doctor was going through my repeat items list and asking which items I also required. “Coloplast MC2000?” he said. “You can scratch those, I don't need them anymore.” Big grin on my face.

So i'm 4 days in to taking Loperamide twice a day and its effects are clear as a spring morning. Kicking the Codeine habit was headaches for a couple of days but not as a bad as coming off caffeine. The blistering pain of the internal blister (that I refuse to acknowledge may have been a haemorrhoid) has subsided and some of the lessons and habits I learned on my journey in to the heart of darkness, baths, creams, chamomile teas, upside down bodily contortions and enemas are all on standby if that bastard butt burn returns.

In the mirror my eyes communicate my new body sans bag and my brain is still somewhat perplexed, something was there, there are scars and a 17 year-old circular patch of skin that could do with a little sunshine. I occasionally stutter one of the idiosyncratic movements that only someone with a bag would know about, twitching the corners of my mouth when I correct my sub-conscious - 'we don't need to do that anymore'. Its almost difficult to think that it was there for so long but writing it down its no surprise that its not missed. I'm almost taking it for granted that I am bag-free but those baths are always going to be deeper than before. There are small changes that make a big difference. I can sleep on the other side of the bed, the house lacks an underlying odour that I only notice now its gone, there is more space in the bathroom cupboard, no clanging bathroom bin chiming a bag change every night, no kneeling at the toilet, i can fart, trousers that fit properly, the house is quieter because the washing machine is not on all the time. Its surprising how quickly these changes become the norm.

I am glad that 2008 is out of the way, the path is much clearer now and the hurdles don't look so scary.

Happy New Year!

Update 4

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.

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.

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.