Monday, 13 April 2009
Follow this link for more info: http://www.chooseandbook.nhs.uk/patients
It was bloody awful certainly something I wasn’t ready for and still aren’t now! The stoma nurse was brilliant as was Danny who was there throughout the ordeal (i’m so dramatic) but that is what it felt like to me. I found it really hard to look at it, never mind clean the damn thing.
My eldest sister was fantastic and she said the way to look at it is ‘this is your little friend, it is here to help you and you need to look after it, as it is you’ and to be honest when I do look at it that way, she is right it is afterall a part of me, it’s not something my surgeon has attached, this was in me and nobody else is grossed out by it or feels queasy by the sight of it, just me, but I know that I will be able to do change it but just not yet. Nobody is pressuring me to do it, which I think is the best way, because when I do decide to be brave and get on and do it, it is for me and nobody else.
I’ve heard that whilst you are having your bag changed, to stop the stoma being active it you wrap it in a cold paper towel this stops the activity whilst the stoma is being cleaned. I have only heard that today, I will try it and update my blog to let you know if it works.
Also to eat 2-3 large marshmallows before the bag is changed helps stop the stoma been active for up to 30 minutes.
The stoma changes in size so it is important for the first few weeks to measure it, mine started of at size 30 but then went down to 30 across 25 and now today it is 20 / 25. We did get told in the hospital it would change size some get bigger and some get smaller that’s just the way it goes.
warm the stoma bag up, it does adapt to your body heat but this just makes it a little bit easier. Warm it under your arm for a few minutes or under a pillow or something but it does help to stick faster.
When cutting the bag if it is still not the correct shape, give it a gentle tug that will soon get it into shape. (with gloves of course)
I cannot get used to the smell, it makes me feel sick so olbasol is a good one to put on a tissue whilst emptying your bag or vix under your nose.
I have found so far, is to change your bag on a morning before you have eaten and drunk anything, that way the stoma wont be active and it will take minimum time to put on. If you change your bag straight after you have eaten, that I have found is a good time, because the food is not yet digested it will take sometime to pass through into your stoma bag.
Cavalon is a really helpful spray for the skin round the stoma, it is not uncommon for the skin to become quite red and sore due to it been cleaned daily or every other day depending on your preference. I was quite worried about the bag been changed in case it hurt taking the bag off, but you get this off with a non sting adhesive remover and it doesnt hurt at all.
You will probably get told this by your stoma nurse but in case you don’t. Your motion needs to be of a porridge consistency, which it may not be in the first few days if you are drinking more than you are eating. I was advised to take some imodium to thicken up the motion which within a day you could tell the difference. You can take up to 8 tablets within 24 hours, I have only needed to take 4 a day and it works well. If the motion doesn’t thicken up with the imodium, nothing to worry about, there is some more tablets you can take that your stoma nurse can tell you about.
Peppermint tea / water is really good for trapped wind and being bloated, because if you are unfortunate enough to get trapped wind afterwards, like me that I found was a good one.
Ask your stoma nurse to explain what laperimide does and how it works and why it needs to be taken when it does. This will make you understand it better and use it properly.
I rang Danny and he came down within 10 minutes and off we went again. Everytime it was cleaned and dry and ready for the new bag to be fitted it would start again, like a naughty child or something, you have to laugh about it there is nothing you can do after all. So nearly an hour after cleaning it again it finally went on. We went to see my surgeon this afternoon, he was more than happy with my progress, the scar is so neat and tidy, it is weeping slightly but he wasn’t worried about it at all.
My surgeon did say that in case I was in 2 minds after having the surgery (which I wasn’t at all) there was a possibility that my bowel could have perforated and it had started to affect my appendix also which would have meant emergency surgery and no neat scars like I have got. It could possibly be 7-8 weeks when I go back in for the reversal which is fantastic as I thought it would be another 10 weeks. My surgeon told me he took 2 mtrs out of me which is 6 1/2 foot and i’m sure I have shrunk, some combat pants I wear usually fit me well but now they are dragging on the floor.
Oh well good excuse to buy some new clothes!!
From been on a high comes the lows which again I wasn’t prepared for 2 days before I was going home, I started to feel quite with drawn, very teary, vulnerable and overwhelmed. I was lucky because I had my family there everyday to see me and Danny was there the full day everyday, so I was never on my own and that is the way I wanted it. First day back home was again quite teary and overwhelming, but was so happy to be out to get some fresh air and be in my own surroundings. I really think that being positive is key, I think it really helps with your recovery time.
My new surgeon who carried out this operation, I only started seeing him in February 2009 and from the 1st consultation, I had my colonoscopy less than 2 weeks after we went back for our results and he said that it was worse that what he thought and couldn’t afford for me to have this operation in a few months time or even a months time because I was due for another flare up and a bad one by the sound of things. The surgeon then arranged for me to have the operation in March 2009 with my consent of course.
I couldn’t believe it not even a month since meeting him and he had done more for me than that rubbish consultant did in 3.5 years.
The Stoma Nurse who visited me recently told me that if I wouldn’t have had this operation when I did, within 10 years I would have had no choice as the risk of getting bowel cancer would have been far greater. Not an easy thing to hear but Thank God I have had it done.
My surgeon who I couldn’t recommend highly enough by the way, said to me before I had the surgery - ‘2 things my patients say to me having had the op is 1 - no more looking for a toilet whilst out in public and 2 - they wish they had known about the surgery long before’ doesn’t that sum it up perfectly for people who still are not sure about having this operation.
I remember coming round from the operation., apart from been extremely drowsy I can’t remember been in that much pain. To me the pain isn’t as bad as when I have eaten something that hasn’t agreed and rushing to the toilet, that is pain the feeling sick, hot sweats not really knowing what to do with yourself. That I found more painful than the actual immediate afterwards.
I wont lie and say that you’re not in any discomfort because of course you are, I suffered terribly with my shoulder which sounds silly but I had trapped wind in it and that pain was worse than the stoma and the pain in your muscles put together, it was bloody horrible, but its not just you going through this which I have hopefully made sure my family know. Yes it was me who had the surgery but the aftermath the emotional turmoil, you know as much as me, you don’t or wont want to see anybody you love in any pain and discomfort and that is what they see day after day if you’re not lucky. It is really hard to see somebody in pain and feel so helpless.
I didn’t see that they were helpless, they were doing more than they thought, just been there gave me a boost. Danny didn’t leave my side in the 5 days or the years before hand, he has been through this with me every step of the way, which hasn’t been easy, but we have got through it and it has made us stronger for it. I have the utmost respect for that man, for how he has dealt with it and kept me strong and positive, a lot wouldn’t have he definitely is my rock! I couldn’t have got through this without him or any of my family.
When I came round I was in Intensive Care, I remember Danny being there and saying my name as I was still in and out of consciousness, I was hooked up to drips and had a cafiter tube attached to me, I had a morphine tab in case the pain was too bad. I then remember my Mum & Dad being there and my sisters. I remember my Mum and my eldest sister crying and me saying that it was alright. I have heard and was told that when you are first in the icu you don’t remember a thing, but I remember quite a bit really. I remember my sisters sat at either side of me and they both kissing my hand and telling me I looked like I had colour in me, (I had fake tanned the day before) I don’t remember feeling in too much pain at that point probably because I had morphine and was extremely drowsy. My eldest sister phoned me at 3.00am in the morning, she couldn’t sleep so I was laid down talking to her for a good 15 minutes, that conversation I don’t remember but i’m glad it put her mind at rest I was okay, because it is also traumatic for your family to go through this too.
I was in the best place to be looked after and one of the Doctors who was looking after me was brilliant. I remember I couldn’t drink any water only allowed swabs to refresh my mouth. Then came the dreading sitting up the next morning, that was pretty horrendous the Dr said that I went green but did well not to faint because people usually do. I just remember being so hot and clammy and longing for my family a familiar face to be there. I then had to move from the bed to the chair beside the bed which I did and had a fan on me the whole time which helped...loads. I fell asleep on the chair and then I remember Danny walking in. I then I had to get from the chair into the wheel chair, this makes me cringe even now, I coughed without any notice I didn’t know I was going too oh my god the pain, the tears just rolled down my eyes. Anyway don’t remember too much about this day apart from being wheeled down to my room I remember trying to straighten my hair feeling full of energy which quickly went. I got into bed and I don’t really remember too much more.apart from my mum and dad and my sisters coming with some beautiful flowers for me.
The 2nd night in hospital was awful, I hadn’t had a particular great day mainly with the pain in my shoulder. Through the night I was very uncomfortable the bed wasn’t very comfortable and everytime I moved my shoulder it was giving me pain. The nurse came in through the night and tried to make me comfy, she was lovely all the nurses were lovely. I sat up and was in agony and crying, she called for another nurse to hold me up whilst I was being sick and was having hot flushes, I still am for some reason if anybody knows why please let me know. I know that after the surgery hot and cold flushes are normal, but nearly 3 weeks later and I’m still the same.
On the 5th day in hospital I was getting restless been confined to my room, which I know I was very lucky to have my own room, but I am not the best with stagnant air and was longing for some fresh air. My sister and one of the Nurses suggested me and Danny to go out in the wheel chair as I was doing much better. By this time I was rid of all the tubes and just having paracetomol for the pain, so walking around was much easier.
We went out for something to eat close to the hospital, it was gorgeous weather and the fresh air felt amazing on my skin. We didnt manage to stay out too long as my back started to hurt quite badly. A classic case of trying to run before I could walk, but I am still glad we went out because it was starting to really get to me being stuck in the hospital.
My first emotions were after having the op and everything is back to normal, and not a stoma bag in sight, but this is my reality, this is really going to happen! I looked at a blog last night on a website I found, this guy had been for his op and in his own words and pictures shown graphically of the scars and the stoma bag, I highly recommend looking at the website, I found it very informative and I am so glad that I did look at it when I did as I had know idea what the stoma would look like. The stoma bag, the scars it did and has freaked me out, not to the point I won't be having it, but now my thoughts are turning to been put on the bed and getting wheeled down to theatre, leaving everybody and can imagine it will be upsetting. Then waking up to i’m not sure how much pain and discomfort but then getting used to having a stoma bag.
I do feel that more should be talked about,more information to be given before the operation, because as far as I knew, I would have an operation and have a long recovery and then over, but it looks now, that there will be another operation after something called a j pouch, which I have never been told about, so whether what I was looking at last night is different to what I am having, or I just haven’t been given all the information about the operation!. The NHS are shocking that in 3 years this was never mentioned as an option a last resort maybe but all the same an option. I find it disgusting.
So from July through to now, I have had more accidents than I can remember, more so when I have been stressed or eating something that didn’t agree with me, but it has happened everywhere. The times it most happened was in the car either to work or coming home from work, it was awful there was nothing I could do they were awful times.The most embarrassing place has been at work, I have had to go home get changed then go back again, awful times are coming flooding back, and even though I am still not in remission, I haven’t had that happen for awhile. Work have been great, really understanding and helpful and supportive, and have even given me my own key for the disabled toilets, to hopefully help with the urgency situation and so far it has a lot!
When I am bad I can literally go to the toilet 20 times a day, so with that comes tiredness, weakness, short tempered, looking ill and pale, and now I am anaemic from loosing so much blood everyday, everything that everybody with this condition who has flare ups will understand. It’s really difficult sometimes, even with an understanding partner, when you are tired at 7pm and are going to bed and then up 6-7 times through the night maybe more, maybe less, you don’t also get to spend a lot time with them. I know this condition is not a cancer but it is bloody awful and I hope and pray that somebody can find a cure for this, because even though it isn’t a cancer, it is very restricting.
This link is to the one that I talked about in this post, well worth a look: http://www.jpouch.net/
Before I had this awful awful condition I have never even heard of it, but because it is far from glamorous it rarely gets spoken about in the media, which I understand to be honest, people who don’t have this or don’t know anybody who has this, wont want to hear about it, is it ignorant? That I think is down to opinion.
I am writing this because in less than 2 weeks time, I hope to be rid of this ball and chain round my neck (colitis) and I want to look back and remember just what a burden this was on my life. In your 20’s when you should be going out partying socialising anyway, it makes it extremely restricting.
Another reason why I feel so strongly about having this operation is because me and my partner would like to start a family and I cannot begin to think about this until I am in good health. I feel let down by the NHS I have been seeing the same alledged specialist at my local hospital since the start and near enough everytime we have gone he has just prescribed me stronger drugs and more of them, there was no care or even consideration for my well being,
I am going to try and remember all this, because I hope that in a few years, looking back, all this will just be a distant memory.
I went down to the doctors and cried and told him how much pain I was in, he said that I had caught a kidney and bladder infection from the enema having colitis, I had a week off and work at this point was ok with me. At the same time, my partner and I were having major money problems which resulted in us falling out a lot, I wasn’t very happy at all, and stressed out more than I probably ever have been.
The colitis started to have an effect. Firstly it wasn’t very much just a bit of abdominal pain, but not so painful I couldn’t cope with it. After yet more tablets, I did start getting better, went back to work but decided I wanted a fresh start and moved jobs.. I started my new job in December 06 and because I was happy, Danny was doing well at work, things felt more settled.
July 2007 I had my 2nd flare up, I don’t really remember that much about it, I just was struggling to eat, was passing blood which was black and of course the dreaded runs. I went to see the dr again, he told me that I had to go up to the hospital straight away, because he didn’t want to alarm me but was worried it may be a stomach ulcer. I had tests and because I hadn’t been able to eat, was put on a drip for a day.
My Mum & Dad didn’t get my illness, probably because I didn’t, and I never remember speaking about it. Danny and my family might remember differently but it really wasn’t a burden on my life. My flare up went on for a few weeks which at the time I thought was bad, but I’d get to know that actually that was very minimal. From October 2007 to July 2008 I was fine again, to the point I forgot that I had it, my weight was normal, I could eat normal, go out normally, have a drink, everything that you take for granted. I went to see my Dr at the hospital and I remember him saying, you look well, your eyes look quite bright, I want to take you off asacol enemas. I was a bit reluctant but he said as long as you carry on with asacol tablets you will be fine. With him being a dr you would think he would know what was best but clearly not, within 2 weeks I started my 3rd flare up and up to today It has not stopped.
It started just as normal, cramping, limited to what you can eat which I thought was bad enough, but nothing compared to how bad I did get. I found it hard at work because I didn’t want people knowing what was wrong with me, because to explain your condition to somebody who you don’t know very well is embarrassing for anybody i’m sure and definitely no different for me. My supervisor was great when I got to the point that I had to tell her. You can’t be going to the toilet 10-15 times a day and think that nobody notices. Within a month I had started to get really down about my illness, and it really started to show mainly at work. At the time I thought I could cope with it, but clearly I couldn’t, and soon started getting depressed.
The depression I find is harder than the colitis, again that’s my opinion and not everybody’s. I have never experienced anything like it in my life. The hardest bit was understanding and accepting that I had depression, which I saw as a weakness. but I knew that I had never felt anything like it before. It amazes me how negative you are, and that you have no control over it, you think you have but you haven’t. I don’t remember a lot of that time, other than that I was sinking fast. It upsets and unsettles me just thinking about it, and all the while nobody really knows what you are going through. Again went to the doctors, which started to become my 2nd home, I told him how I felt but again I can’t remember what he said because that part of my life is a blur, going to work coming home I don’t remember any of it. My mum suffers with depression, I admit that before having depression, I thought it was a state of mind, you choose to feel like that, it just shows what little I knew and people who think that know, because it is not like that at all. It is not about how strong or not strong you are, but you literally have no control over it. Seeing my councilor helped even though I thought it didn’t looking back, she was great. I sent her this text when I was at my lowest:
'Don’t really know what to say had a hard week feel like I don’t know what is happening to me really. I think from what i’ve read on the net I could be depressed, feel quite lonely really like I don’t have any control over anything and I feel scared of how I am feeling. I was going to get in touch earlier on in the week but thought I would start feeling better. I’ve never felt like this before its very strange. I think I am going to see the doctor about maybe getting some tablets which I didn’t want to do but I can’t cope with this much longer. It worries me a bit that if I go on them and might not be able to work out if it is me or the tablets thinking.'
I sent that on the 17th August and it is the first time I have read it since, wow can’t believe all that went in a text, but that was just how I was feeling. I was so scared of how I was feeling, and even though I am still on the tablets I definitely don’t feel like that now..
I have been with and lived with my partner Danny for 4 years and this isn't an easy thing to go through for either person, but we have tried not to let it control our lives. It has been hard like any colitis sufferer knows, when you are not in good health, you don't have a good lifestyle, unfortunately they go hand in hand.
I have been lucky that I have had the support from my family and friends through the time having colitis and the depression which both are not easy things to go through, but I feel much stronger now that I have been through them and come out the otherside and I really hope that anybody reading this blog can relate to my story and see that there can be a happy ending.
It’s important to remember that this is my journey, what I have written here may not necessarily happen to you, it just gives an insight to the before and after surgery. I hope to continue with this blog throughout the 2nd operation and hopefully only share good news with you.