Wednesday, 27 May 2009

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.

Tuesday, 26 May 2009

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.

Sunday, 10 May 2009

15th Post - Bad Memories

I’ve been remembering a few things over the last few days of memories when I had colitis, things like when Danny had been in the bathroom at home and within 15 seconds I would need to go to the toilet but because I couldn’t wait for him to come out, I would have to go the toilet in the bin or in a bucket in the bedroom quite often. You definitely loose your dignity.

Or eat that slice of pizza that I knew I would suffer with. Or like last year for my Dad’s birthday we went out to a restaurant and I didn’t even finish my main meal before we had to leave, or the terrible mood swings I would have because of how I was feeling, things that however close you are to your partner/ family you can not fully explain to them for them to understand.

Some of the worst things that I remember is right at the start, when I hadn't been diagnosed with UC, We had gone to Danny's Dad's house for a curry and I suddenly came over all hot and sweaty and desperately needing some fresh air. The pain was unbearable I didn't have a clue what was going on.

We got home and I was just violently sick and retching, even though there was nothing in my stomach and it really ached. I just thought it was the curry been too hot for me or something not that that would be the start of things to come.

Or been out in the car usually on the way to work or back home from work and I would have to try and coax myself in to that it was all in my head and I didnt really need to go the toilet or the pain in my stomach wasnt so bad, and then the accident would happen, I just couldnt hold it in any longer and we are talking seconds before it happened, not like a normal person can hold it.

We recently went to Harrogate for a wedding, and we had gone out the night before and I was really careful what I ate in case of having a flare up, we were walking back to our hotel room after having a lovely night and instantly I needed to go, we were only 200 yards from our hotel but I had to rush in to a pub and go to the toilet but I didnt get there on time and had yet another accident. I ended up having to throw my leggings and underwear in the bin and walk out of the pub as if everything was normal.

It was bloody awful I tried to keep it together but as soon as I got back to the hotel I couldn't stop crying. Danny was brilliant once again, but that was hard knowing that the wedding was the next day and the same thing could easily happen again.

Luckily it didnt and I did try and have a good time, but it was always on my mind that it might just happen when I least expected it and might not be able to get to the toilet on time. As much as I had a good time I was pleased to be going home so that it was easier to deal with if it did happen.

I can't tell you what a hugh relief it is to not feel like that anymore, to not worry about going out even to the corner shop in case of it happening, that we can go out and thoroughly enjoy ourselves knowing that that is part of our history not our future.

We have a friends wedding coming up in July and I was so nervous about going in case the food didnt agree with me or that the toilets were too far away to get too. That I am pleased to say has all gone, now I can't wait to go and get dressed up feel nice and relaxed and just enjoy our time there.

It is an amazing feeling and I feel a very lucky lady.

14th Post - Thursday 7th May 2009 - Happy Days & Apprehension

Well I know I said I wanted the operation as soon as possible but I didn’t expect it to be within the week.- yippee!!

I have received 2 letters through from the hospital today, 1 being that I have to go for my pre op next Monday 11th May to have my blood taken, urine tests and ecg tests and have a radiology which is basically a dye that they put inside your back passage to see if there are any leakages or anything that hasn’t healed like it should. If there is I’ve been told it is not a problem, it just means that the stoma bag needs to stay on a while longer and they carry the procedure out again 4 weeks after to see if everything has healed by that time.

My consultant was happy as I said with my recovery and feels confident that there won’t be any problem. My consultant said that he has carried out 58 of these operations and in all that time only 2 people have not been healed, so if he is confident so am I.

My consultant would like to carry out my operation next Wednesday 13th May, which I can’t quite believe. I’m so happy and again feel apprehensive just like I did before my first operation, even though I know that it will not be as big an operation, everything is moving so fast and I can’t believe that 6 weeks has passed already.

So 6 short weeks has passed now, and for some reason I am feeling quite un nerved about my second operation, don’t get me wrong I am happy with the operation been next week, but nobody seems to understand that even though this is not as big an operation as last time, I am feeling overwhelmed with it all, as everything is moving so fast. I don’t know why I’m feeling like this. I’m not so much worried about having the operation and I am really happy that my stoma bag will be gone, it is another step closer to a normal life.

I think what it is worrying me is the few weeks after the operation, I can imagine that it will be quite restricting, as I have been told that because I will be using my bowel normally for the first time in 6 weeks I will be going to the toilet up to 25 times a day, so really like having colitis again and I think that it will be harder the after math of this operation and it is taking its toll on me today. I have had quite a low day, not to be helped by having a monster hang over ( self inflicted I know) but everything just seems to be moving so fast and today I think it has just got on top of me a bit.

13th Post - 5th May 2009 - 6 Weekly check up

We went to see my consultant this week for a 6 weekly check up, my consultant was really happy with me, he thought that I was looking well and everything I told him he sounded impressed with, that I had recovered so quickly. He then asked me how quickly I wanted to go back to have the reversal, I told him straight away!

Even though I do want the stoma reversing straight away, I have definitely become more fond of it, because it has helped me so much and I have like I thought I would got used to it, cleaning it and bathing it, everything but actually putting the bag on.

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.