Here is my diary from the day before the operation, to the most recent entry. I will update this should events warrant.
17th March 2008
Arrived in the waiting suite at Worthing Hospital at 2.00pm with Julie and Tara. The stoma nurses, Cathy and Serena came and played spot the ball with me. They marked me with a big "x" - this mark is for the surgeon so he knows the site to place the stoma.
About 5.00pm, I was admitted to a ward - I was in an isolation room within the ward, which I thought was great until the real reason became apparent later. The nurse came along and gave me the required "Fleet" to clear me out. That's when I realised the need for a private room - I was rushing to the loo for the next couple of hours !
The Surgeon's assistant came for me to sign the consent forms - he explained that he will be removing my Large Intestine, Colon, and Rectum and then form the Stoma all which will be done by keyhole surgery, before finally sewing up my backside.
However, he did explain that there would be a 20% chance that keyhole surgery would not work, and that if so, they would need to open me up in the traditional way. He also explained that due to the area in which they are working, there would be a chance that I may lose the ability to obtain an erection in the future. Marvellous - fix one problem and create another I thought.
Good news though - I was scheduled to spend 14 days in hospital - he said that as I was fit and healthy (which was news to me!) - I would only need to spend around 5 to 7 days instead.
Midnight - my last drink of water.
18th March 2008
- 2.00am - put on Intravenous drip.
- 7.30am - moved from ward to theatre waiting area - getting anxious now!
- 8.00am - the anaesthetist saw me and asked loads of questions (what am I having done, who am I etc. Then they wheeled me into theatre.
Once there, more questions. They also said that I would be having a tube down my throat to aid breathing - and would I mind if a medical student did it. I agreed to this - everyone has to learn sometime, but as I would be asleep, I would not know about it!
Just before they placed the mask over my face, I told the anaesthetist to do a good job as I wanted to be home by the end of the week.
19th March 2008
Note the day - I have been asleep for about 25 hours!. All I remember is the nurses telling me they had telephoned Julie asking her to rush in. I asked the time, and they replied saying it was 9.15am , so even though I was very drowsy, I knew something had gone wrong.
I remember Julie coming in and holding my hand, and I also remember that Tara (my stepdaughter) was with her, but that is all. I just kept falling asleep.
20th March 2008
I am in the High Dependency Unit, and in great pain. I'm on a self-administered morphine drip, so when it all gets too much, I can simply press the button to give myself morphine. I am still so very tired.
The nurses get me out of bed, and into a chair before Julie and Tara came to visit. I remember them coming, but not what we spoke about. I'm aware that I have needles and drips everywhere, including a drip in my neck, which is irritating me, even though I cannot feel it.
Later that night, I get moved from the High Dependency ward onto a normal surgical ward - before I get moved, they remove the arterial needle in my neck. I'm shocked at the size of it! - no wonder the fluids poured into me so quick.
I'm left alone for the rest of the night by the nurses who must have decided correctly that I have had enough of being pulled about for one day.
21st March 2008
I'm seen by the physiotherapist who has said that as a result of the operation, I will have a lot of phlegm on my chest that has got to be coughed up - and as much as I try, it is very painful to do so. Therefore the self-administered morphine takes a battering.
I'm still plumbed into a catheter, and also have a body drain fitted that seems to be filling with blood and yucky bits at an alarming rate.
The surgeon came to see me, so I finally found out what went wrong with the operation.
It appears that the keyhole surgery was a success, but later in recovery, I developed an internal bleed, so I was rushed back into theatre, where 7 hours, and 8 pints of blood later, I come out sporting a 9" scar running down my chest. This I am told saved my life. What can I argue - I'm alive, but the strange thing is, I predicted complications before the operation took place. Second sight eh?
Have my first ever bed bath - it's not all that I imagined it to be - and I blame the carry on films for that! - but I do feel sorry for the nurses. It can't be pleasant for them, although it's just part of the job for them. I feel a little humiliated, but I don't know why.
Mandi & John, work colleagues and good friends visit in the afternoon - I remember sitting in the chair at my bedside when they visit, but as I am so drugged up, I don't remember what we talked about, but I do remember looking forward to their visit.
I also had another two pints of blood transfused today.
22nd March 2008
Could not get out of bed today - I am so sore, in pain and very tired.
23rd March 2008
Managed to get out of bed today and sit in a chair, but only for ten minutes - the catheter is causing me discomfort. I'm also aware that when I press the button to inject the self-administered morphine, I break into an uncontrollable sweat that lasts a good 20 minutes. As I have to administer it every 5 minutes or so, this is not good news. I am continuing the physiotherapy on my chest, but cannot yet walk, thanks to the catheter.
I'm aware of the Ileostomy bag on my chest, and also the strange gurgling noises coming from it, so I guess my bowels, or what remains of them have started to work again. The nurse came along and changed my bag, so for the first time ever, I see my new stoma. I'm disgusted by it, and have to turn away. I don't know what disgusted me more, the smell or the look of it. It is huge, and very swollen.
24th March 2008
The surgeons make their rounds and say that I am making good progress, so I can start drinking fluids again. For some reason, this perks me up, and I manage to sit in the chair for a good few hours. I can't drink their tea though, (horrible stuff, hospital tea) but luckily, Julie has brought some juice in, so I can drink that.
25th March 2008
The surgeons decide that the catheter and body drain cane come out today, and that I can also start eating solid food.
The catheter removal was uncomfortable, but the body drain removal bloody painful. They leave me sulking over an open wound which they decide is better than stitching.
I'm asked to drink as much fluid as I can to kick-start my bladder muscles again, but as they now need to monitor the output, I have to wee in tubs. I decide to walk to the toilet, but am shocked at how weak I am - this is the first time I have been able to walk in over a week - I am walking in great pain, and doubled over like a question mark. Typical though - get to the toilet, and can't wee!
The surgeons decide that I have some sort of chest problem, so I am sent for a CT scan, which means another needle. Lovely!
26th March 2008
I knew this would happen. I have drunk gallons during the day, and what goes in must come out - the result being a 44 year old wets the bed! - so very embarrassing.
I did it twice more in the night. I now have no bladder control at all - very frustrating. The nurse takes it all in her stride, and laughs with me.
Julie washed my hair in the evening - again, the first hair wash for over a week. I felt so clean afterwards - it's surprising what a simple hair wash can do for your morale.
The results of the CT scan show I have a post op infection, so I am put on a course of anti-biotics and am told I will have to remain in hospital for another week.
The plaster covering the large scar on my chest is removed. It's removal means I can walk without getting out of breath or doubling over in pain. It looks like the plaster was on too tight!
Slowly regaining bladder control, but cannot use any pressure as it is very painful.
I managed to empty the bag myself this morning - felt really happy about it, especially considering how I felt a few days prior when I saw it for the first time.
Serena, the Stoma nurse came to talk to me and give me some supplies for a few weeks. She also changed my bag for me whilst I watched - I know that I will have to change it myself from now on.
27th March 2008
The surgeons are suitably impressed enough to tell me that I can go home either today or tomorrow (despite what they said yesterday) - I decide somehow it will be today.
I call Julie and tell her, but break down and have tears in my eyes, so I have to call her back - she is happy, but also wonders why the surgeon has changed his mind so quickly. Maybe they need the bed!
I cannot go home unless I have all the drugs prescribed to me. The head nurse must know how anxious I am to go home, so she pulls out all the stops to get the drugs released from the pharmacist in record time. The only thing now preventing me going home is the Stoma nurse. They will need to sign the discharge papers stating they are happy with my attitudes and that I can cope with the stoma.
I spend a frantic 20 minutes or so on the mobile trying to track down either Cathy or Serena, but the office telephone kicks in - I must be patient and remember that they have other people to see besides me.
Within minutes of me putting the phone down, Serena came to see me anyway! - I explain the situation to her, so we both quickly run to the loo where I change my bag for the first time ever in front of her. Serena patiently points out that I am rushing, and to use plenty of warm water to help peel the adhesive off.
At 4.00pm, I am allowed to go home. A very emotional time. It took me (with Julie's help) absolutely ages to walk from the ward to the car. Once home, I was sweating for a good half hour. I am so unfit!
As I seem to be producing a little blood from what remains of my backside (I have put this down to the stitches), I decide to have a shallow bath and soak things.
28th March 2008
Sat and rested all day - mostly with my eyes closed, but so good to be home. Had another bath in the evening.
29th March 2008
Had a shower today, but when I got into the bedroom I noticed I was bleeding quite a lot from my backside. Julie has a look (good old Julie!) and between us, we decide I have just broke a stitch.
30th March 2008
Continued to bleed, but a little more heavily. Doubt it's anything to worry about.
31st March 2008
The district nurse came this morning - he seems happy enough with the way things are. I call my doctor about the bleeding. She tells me it sounds like it's nothing to worry about - and that it is probably best to pad myself out to absorb the blood.
In the afternoon, I stood up, and although managed to get to the downstairs toilet, the blood poured out of me. - and I do mean pour!. A tap turned on full would not have produced as much fluid. Now I'm getting worried.
The blood continues to pour out, so I call Julie at work and ask her to come home to take me to A & E.
After waiting for the surgeon to visit, I'm informed that what has happened was totally expected and that I should have known about it. Apparently, I have so many stitches inside me, and a big empty space where things used to be that my body is constantly moving, and so will bleed a little.
With a drain installed, the blood flows into it, but as it was removed in the hospital (see 25th March), the blood has nowhere to go, so it simply collects. Eventually the blood has to come out under the effects of gravity. As it has not really bled much since the drain was removed, it looked quite dramatic when it did.
I had some blood tests, and was put on a drip for the afternoon before being sent home with some padding to help mop up.
1st April 2008
Lazy day - I can't do much as it all aches - but I'm only bleeding a little now which is nice.
I found out that I will bleed if I sit on the loo to urinate - I'd rather not bleed at all, but I think it's best that I "let the blood out" so it does not collect like last time.
2nd April 2008
Still continue to be lazy at home as I don't want to "push my luck" and have a setback. Bleeding continues, but only spotting
5th April 2008
Have received a sample two piece Stoma bag through the post and quite like it.
I have some broken skin around the outside of the stoma, and when I remove a one piece bag, the adhesive flange pulls on the broken skin, so maybe the two piece could help for a while, because the flange would theoretically remain in place for a few days, but the bag removed whenever I want.
Manage to walk around some shops with Julie this afternoon, but I am paranoid that I will start bleeding in a shop.
Had another bad night - I woke up after a couple of hours in pain every night - it's not so much the bag, but the large scar I have running down me that is the problem. I know it will ease up eventually.
7th April 2008
Have called the Stoma Delivery company - they are to send me 60 of the two piece bags, so I can change them twice a day if I wish, plus some deodoriser (to put inside the bag), and some additional bits which may help me - they should be here tomorrow.
Have done a few bits around the house today, and managed to stay awake through the day, but I started wilting during the afternoon - guess I did too much again today - I must slow down and accept things the way they are.
8th April 2008
Had another bad night - this may be my fault as I have refused to take pain killers, but I just cannot get comfy in bed - it's either the scar pulling on me, or my entire tummy aching. As a new extra, my sewn up backside was itching like crazy as well!
9th April 2008
Have been using the two piece bags for a couple of days now - have found that though I can only wear each flange for about 2 days as they "unstick" themselves - it's heaven to be able to change the bag twice a day!
Still bleeding, but not by a great deal.
Have started to walk Mutley to meet Julie from work. I will give it another week, then see if I can walk him a little further.
11th April 2008
We take Mutley back to puppy school - thanks to the illness we have not been able to take him this year, but as he enjoys it so much, I agree to go along with Julie. I suffer from the seats there, and decide that next week, I will take a cushion or pillow to sit on.
We went shopping afterwards, and although I can only push the trolley, I feel fine, right up to the moment I cough, and can suddenly feel a rush of blood coming out of my backside. Decide that I have had enough of this - there is nothing I can do about it, but it's so annoying.
12th April 2008
I refuse to take the stoma bag off in the shower or bath just incase I "mess" myself whilst it's off. The problem with this is you never feel totally clean. I have found a company on the Internet that sells "Stoma Caps" - these allow you to remove your stoma bag in the shower or bath, and have a cap covering the stoma to catch any waste. They are quite small, and will apparently only last an hour before becoming saturated.
More samples arrived today.
13th April 2008
Managed to walk to the local shop today - not much to brag about, but as it's a mile each way, it's quite an achievement considering how I was this time last week.
16th April 2008
Strange problem has arisen - I'm no longer losing much blood (but it is still bleeding), but instead appear to be losing a lot of "mucous" from my backside - this started yesterday - but today seems to have got worse. Julie spoke to the local chemist who says it sounds like some sort of fungal infection.
Think I will make an appointment with the doctor tomorrow - it's very irritating just to stand up and feel something running down your leg. The washing machine has never see so much action.!
18th April 2008
Saw the doctor. The scar running down my chest is getting very sore - and also my bottom is weeping buckets of mucous. The scar is not infected, but she has placed an iodine patch over it, then covered it with a dressing. I have been given instructions to change it every couple of days.
As for my bum - again, she says that this is totally expected - the stitches are now falling out, and so lots of sweat etc will be produced. This is something I will have to put up with for a while longer yet. So, hot baths seem to help, and I guess that is what I will be doing for the next week or so!
29th April 2008
The iodine patches have done the job - the scar has healed up nicely, so have decided to leave it uncovered from now on. However, the top of the scar is now weeping a mixture of blood and water - and weeping a fair bit! - as I will see the surgeon again soon, I will mention this to him.
Managed to go "Commando" in the shower today - it was heaven to let the shower completely soak "mini-me" (as Julie has now called my stoma) - I have never felt so clean - wish I did this before!
1st May 2008
Saw the surgeon today. He says the weeping on the tummy scar is simply caused by a stitch that has broken off under the skin and is slightly protruding, causing the problems. He said it will heal in it's own good time.
As for the weeping from my backside, he said there is a small area that has not healed yet, and this is allowing the mucous to pass through. Because of where the tear is situated, it will be difficult for it to heal on it's own, so I have to be prepared for another couple of months of discomfort.
3rd May 2008
Shows how much the surgeon knows ..... it has stopped weeping already! Mandi & John came over to visit, so we all ended up walking Mutley down the beach. Again, not that far, but a major achievement for me.
5th May 2008
Spent all day out in the garden, tidying it up, planting some veg - that sort of thing. Don't know if the fact that I am drug free has something to do with it, but I feel on top of the world today. Never felt better.
6th May 2008
Still not weeping, so I can only assume that the tear has now healed. The output of my bag is very watery again - time to hit the Loperamide!
27th June 2008
No update for a while, as nothing really to report. I am using "thickeners" for the bag rather than Loperamide, as I want to remain as drug free as possible. Have seen the doctor, but am not allowed back to work yet. I am still to be signed off until the 15th July, but I have to see her again on the 10th July. If she says I cannot return to work, then I have to stay off for another month. - Fingers crossed
10th July 2008
The doctor agrees I can return to work on the 15th, so long as I promise to take things easy, and work part time for a while.
15th July 2008
Managed half a day at work before being totally exhausted. Everyone at work is pleased to see me, and that helps the morning speed along. My backside still aches now and again - some stitches are still there, but these are "heavy duty" ones, so maybe things are as they should be.
I'm used to the stoma now - my only problem is knowing which bag to use. I'm still torn between a one piece and a two piece bag. Both have advantages over each over. The two piece is better, but a git to clean after emptying - the one piece gives no problems, but requires changing more often.
15th March 2010
Nothing dramatic has happened since the last update. However, plenty has happened, and I'll try to list the highlights here.
Just slightly under the two year anniversary of my operation, and all scars have healed up nicely. I have "forgotten" how ill I was, and for the best part, my life carries on without much changing of lifestyle. I would lie if I said both myself and Julie have been unaffected by this - we have, but the secret is not letting it dictate my life.
It has helped in the last year or so that my friends can take the micky out of my bag, as this is their acceptance of it, and the look on Julie's face when my stoma makes a lovely farty noise is a picture to behold.
We have both started to get our social lives back.
I have learnt not to let the bag get too full. I know what foods for me turn my poo to water, and which ones are absorbed better. I know not to drink too much beer in the evening, because the bag fills with air to the size of zepplin proportions, and I know not to leave it too long before letting this air out before the bag blows up !
15th December 2010
Thought I would complete the year with a further update.
What remains of my backside still sometimes aches, which is a suprise to me as it's no longer there! I do sometimes get a little stressed with the Stoma - especially when it becomes at it's most active when being cleaned.
I'm enjoying eating foods that I could never previously dare eat, and have learnt the art of drinking alcohol again!
All in all, yes I still don't like the Stoma very much, but I am used to it. Mini-Me's creation saved my life, so I must not forget that. There is no reason why my life cannot continue as before, and in most cases, it's better than it ever was!
1st July 2012
It's been one and a half years since the last update - so here is a quick refresh.
I think I have a hernia around the Stoma itself. I will see the doctor about it. If it is a hernia, it could cause problems as it will create a "weak spot".
I still have to wear baggy style clothes, and an still very conscious of the Stoma "bulging" through my clothes, but no longer care if people stare. I would rather they asked me and I'd show them, just like the customs lady at the airport recently!
I have decided to create a forum and redesign these humble offerings - the forum is now live and at forum.mystoma.co.uk. See the links on the left for more details.
23rd September 2012
The Forum has been live for a few months now, and is starting to take shape. All I need now are members to make it worth the while. Just myself and Tina are current members.
25th September 2013
A year on. I have today closed the forum. Although it was fun having one, it seemed to exist only for spammers. In the year and a half it was around, only myself and Tina were members, and that is despite Google trawling every day.
I had a telephone call the other day from BBC Radio 4 to request a radio interview regarding NHS care for Ostomates. I will upload the recording to the multimenia section when I receive it.
In summary, here are some advantages, and disadvantages I have discovered from having a Stoma ...
- Restless nights caused by constantly waking to see if the bag is full.
- Not being able to bathe without the bag attached - showers are ok.
- Disfigurement - sometimes looks horrible.
- Having no control over the Stoma output - I can poo anywhere and at anytime.
- Having to carry spares at all times.
- Being registered disabled. I don't feel it, and I don't like it, but I am.
- Bag fills at an alarming rate at times.
- Constant worry about leaks.
- The smell.
- Health - I am no longer in the pain I was in.
- Swimming - I can swim to my hearts delight now.
- Not having to rush to the toilet at all hours of the day and night.
- If I suffer from diahorrea, I won't know!
- Being able to lead a normal life.
- Being able to eat things I could not eat before.