18th Post - You are not alone

It upsets me to think that there are so many people out there still going through what I have been through and a lot more in some cases.

As happy as I am that I am getting back to good health and we are now a healthy couple, I don’t ever want to forget what I have been through to the point where it doesn’t matter anymore, because it always will do and it means a hell of a lot to me to hopefully help people who are going through this and don’t really understand it.

There are a lot of good sites out there, the j pouch website I mentioned earlier (please see link on earlier post) especially to make you realise that you are not going through your experience on your own, there are people to help you.

I know it is hard for people to share this intimately with people who don’t have the condition and you may not feel you can explain the embarrassing aspects of the illness, but anytime you are feeling like there is no way out of all this, please keep faith there is.

There are people out there who can and want to help you through this and try and take comfort in that. It is a horrible, restricting condition to go through, but don’t underestimate positive thinking.

Make sure you and your family are prepared for the journey because the more understanding you have of it, the better you will be able to deal with it.

17th Post - Out of hospital 2 weeks after 2nd Op

2 weeks tomorrow 27th May I have had my operation and It is has been really hard to be honest, harder that what I thought, not only because I have been in pain but for some reason I have had imsomnia and not even averaging 4 hours a night sleep, but the good thing is my appetite has come back and I am again eating like a horse!

I found the pain was mostly in my anus as opposed to my actual wound, because for the first few days I was not eating hardly anything and it was only liquid coming out of me and was extremely uncomfortable whilst going to the toilet. It does say that also on the j pouch website that it is serious butt burn as they put it and I would have to agree.

I would say sudocrem is a must because the motion is still very liquidy and burns whilst going to the toilet.

The consultant doesn't want you to take imodium straight away, in case it puts pressure on the j pouch and in some cases in can pop as it has not expanded so as much as it is not nice it is essential in the early stages.

I have been to see the consultant today and he is happy for me to take it now, which is only 2 weeks on. Not pleasant at all for anybody going through it but essential, and sudocrem or other creams will help. Also fibre gel will help thicken up the motion, but again only a few weeks after the operation.

I am averaging about 8 - 9 bowel movements a day, which is nothing compared to what I thought it was going to be like. It is hard to sleep because you need to go to the toilet through the night, and you may want to get some water proof covers for the first few nights in case of leakages. I was using Tena ladies until yesterday, so again it doesn’t last long at all, but they are needed as you are trying to control it but at the same time it is also trying to control you. .

One thing I haven’t done enough of is exercise, so I would emphasise that to get exercising as quickly as possible, because I have had more aches and pains than last time probably because I haven’t done hardly any walking or anything which is a big mistake on my part.

But starting from tomorrow, the walking shall begin, no excuses!

I was dreading taking my dressing off my wound, because I was worried what it looked like. I really didnt need to worry as my scar is very neat. After a week I took the dressing off and it has been off ever since. Danny and myself has taken our nephew swimming several times without anything covering it, and there has been no problems.

My Mum asked if I would be embarrased when going on holiday and been in a bikini, I said absolutely not, I am so proud of that scar because it symbolises my good health and a happy future. I hope whoever has the operations shares my thoughts on that, because it is nothing at all to be ashamed of.

16th Post - Round 2 Done!

I had an x ray taken on Monday 11th May before the operation, just to make sure there were no leaks inside my stoma.

They insert some sort of dye into you which shows up any issues there maybe, lucky for me everything was as it should be. It is nothing to worry about at all, it is over within 10 minutes and I was very pleased to hear that everything looked well and I would be able to go ahead with the surgery on Wednesday.

I had my 2nd op last Wednesday 13th May, it wasn’t as long an operation as last time, but I remember coming round and instantly feeling sick and been moved from the operating table onto the bed to be wheeled back to my room. I was in an awful lot of pain. I got to my room and got transferred onto the bed, in immense pain.

I remember Danny was standing when I got back to the room, but as soon as he saw how much pain I was in he sat back down because he was so upset to see me like that.
The nurse asked me from 1- 10 how much pain I was in I said 9 the worst yet!

This is not to try and put anybody of this operation, but just to be mindful that it is not an easy thing to go through.

I again had a morphine tab which was not pumping fast enough for my liking, it released every 2 minutes and I really needed it more. I think I fell asleep a little while and woke up when my Mum & Dad and younger sister got there. The morphine started to make me itch terribly, and I couldn’t help but keep scratching my face, they all said my face was a right mess because of it, but I didn’t care it was unbearable. The nurses said that the majority of people get an allergic reaction to the morphine the second time round. They gave me a tablet and within a few hours the itching had stopped.

I woke up really grumpy I can’t quite remember why, but probably because of the discomfort.

The 1st night was awful, the nurses kept on coming in every hour to check on me, which was good that I wasn’t left, but I couldn’t sleep at all, because of the pain and discomfort.
6.00am one of the nurses came in to tell me that I must try to go to the toilet to see if the bowel was working. I managed it.....just.

12th Post - 21st April 2009 - More ups and downs of being out of hospital

3 weeks ago my stoma bag started leaking roughly twice a day, everyday, mostly when I was at home, but once or twice when I was in the car on my way out for the day, not very nice. My Grandad, Dad and me were going to Grassington, I had checked the bag before setting off, all looked fine but I did put some extra protection around it in case of leakages (fat lot of good that did).

We nearly got to Grassington and the bloody bag leaked, I couldn’t believe it and at the time I was upset because unfortunately I had just eaten 2 McDonalds burgers and the site was not pretty. My Dad didn’t know what to do, he was trying to console me and I was trying to clean up my stoma, It was a site let me tell you.

I can look back on it now and laugh but at the time it was embarrassing because every traffic light we stopped at we had an arctic lorry next to us who could look down and see what I was doing, he looked mortified another classic example of not understanding, but that’s not to say it is wrong, I didn’t know what a stoma looked like before having one, so it wasn’t his fault. I couldn’t help but laugh though, his face was a picture!

The stoma nurse came out to see me to check my stoma a day or so later and was a little concerned with my skin around the stoma as it was very red and very raw, due to the bags leaking and having to change them daily did not help the skin at all.

She gave me different options of bags, deeper convex ones that should push my stoma out more and therefore stop liquid escaping, and products that would help my skin, but the biggest reason why the bag was leaking was because I wasn’t eating properly and because the consistency was quite liquid like.

The liquid is easier to seep under the bag and cause sores, but it is a vicious circle if you don’t eat properly and the bags consistency is more liquid than porridge substance, it is going to leak, but because you are worrying the bag is going to leak, you don’t want to eat properly, so the cycle starts again.

The stoma nurse was worried I was dehydrated because of not eating and drinking enough and told me to increase my diet and to start again on the isotonic drinks. The other reason she thought my bags were leaking because my stoma is flush to my stomach which is making the liquid easier to seep through.

11th Post - Important Info Choose & Book

If you are wanting the surgery and this hasn’t been put to you by your Dr, from the 1st April 2009 choose and book has become a legal requirement. If you are not happy with the care and service you have or are receiving from your consultant / gp you can request to been seen private. You will get an option of 5 different hospitals, 1 of which will be an independent hospital (private) not bupa but still private. Your doctor then by law will have to arrange an app for you to see who you would like. If you have a another consultant in mind, they have to refer you to them. I was lucky because I was given the surgeon’s name by my sisters friend who had the same operation 7 years ago by the same surgeon.

Follow this link for more info: http://www.chooseandbook.nhs.uk/patients

10th Post - Been out of hospital nearly a week

It is very hard to adapt to this stoma bag I think anyway, whilst in hospital the nurses were emptying it so the onus wasn’t on me, but last Monday seeing the stoma nurse (they are as nice as people say they are) I had to change the bag myself before they would discharge me.

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.

Post 9 - Handy Tips

My Auntie is an occupational therapist and I went to her for some help, she told me about the 7 11 breathing technique. It’s really simple and can be carried out anywhere at all, breath in for 7 seconds and breath out for 11 seconds, that I found really helped with the urgency thing, as long as you do it as soon as you feel you are needing to go. I only asked her about this a few weeks before this operation but I really found it too help and they have proven that this does work to slow down your heart rate and it calms you down very quickly.

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.

7th Post - Emotional Turmoil

I haven’t had a big operation before and wasn’t fully prepared for it looking at things now, you can’t I suppose prepare for the emotional turmoil of this, the aftermath you are on a high and feel elated even though you are wired up to tubes and been fed through a drip, through all of that regardless the colitis is now gone.

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.

4th Post - Saturday 14th March - Getting ever closer to the operation

Oh my god, I feel like I am going through the motions of having this op. Firstly was surreal, couldn’t believe that I could actually be cured of this awful disease, 2nd was happy sooo happy the thought of normality and everyday living wouldn’t be a a chore, but thirdly I am shit scared soooo scared of just after the op,the stoma bag the scars the emotional turmoil all over again with myself and Danny, because even though he hasn’t got UC, he is definitely going through it with me.

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/

1st Post - An Introduction

This blog is for anybody who is either living with colitis and has had depression as a result of it or knows somebody who this has effected. I hope that who does read this blog finds it honest and straight from the heart and more importantly than anything helpful and realises that there is light at the end of the tunnel even when you think there isn’t!

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.