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.

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.

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.