Jiving on Regardless

{January 31, 2009}   Day three

Feeling pretty much the same today.  Stomach swelling is going down but still very uncomfortable, still need all painkillers.

Went to the toilet 12 times to empty pouch yesterday, twice during the night.  It’s not too bad as it is quite quick, it is just starting to tell on my bottom as it’s getting very sore – I believe it’s referred to as ‘ringburn’ and burn it does!  I am using Xyloproct cream which is definitely helping.  I’m sure it will all settle down soon enough, just got to stay positive.  Once again my Consultant told me “the only work you have to do is up here *pointing to head*” He’s a great believer in positive thinking and the power it has to heal.  I am doing my best.  This is a lot to go through.  I know i am not the first or the last person to go through it and I know that other people can go through far worse but that doesn’t detract from the fact that this is a lot to go through, that I have been through hell of a lot in the last ten years and I am really getting tired of it now.  I can see the end of the road which is fantastic but my poor body is battered and bruised and really wants a break now – fingers crossed it is going to happen now.

Time to shower again. It is a weird thing showering without my stoma.  I have developed habits which were weird to break yesterday.  It’s a bit like checking your watch constantly when you don’t have it on.  I don’t miss the hassle of it though and the infernal itching is gone – yay!!


{January 30, 2009}   Reversal done

I had successful reversal of Ileostomy (takedown) on Wednesday afternoon and left the hospital yesterday, Thursday, afternoon all good. The pain is more than I anticipated but I think that is due to me having to block out any notion of pain in order to actually get me to theatre.  Fortunately it is nothing like as bad as the last op so I am coping fine.  I am currently on Paracetamol, Diclofenac and Dyhydrocodeine.  The only time I am in significant pain is when I first wake up in the morning other than that it is bearable. My stomach looks like a football as it is quite swollen, but the wound is neat and looking good so far.

My biggest difficulty at the moment is colic like pain.  I am drinking lots of peppermint tea and my husband is on back patting duty, especially in the evening.  I guess it just takes time for the bowels to get used to functioning again.  It seems to be easing today so hopefully won’t last for too long.

I feel very tired and it is taking more out of me than expected but I have plenty of time to recover.  Mentally it is quite a big deal as I had just started to become very active and mobile again and now all of a sudden I am set back.  I just have to remind myself that in the long term it is worth it.  Right now I am developing a much closer relationship with the toilet reminiscent of my time with UC.  It is a weird thing emptying my bowels again but so far so good. It is not painful, other than a litte bit of pressure it puts on my stomach, and they seem to be emptying fine, although very regularly.  At the moment I have to go roughly every hour, but it is quick and easy and with no pain it is still significantly better than having UC.  Hopefully, over time, this will settle down to considerably less.

All in all I feel okay.  I am keen for this journey to reach its final conclusion and I really don’t envy those who have to do this procedure in three stages.  Despite how difficut it was I am glad I had my bowel removed and pouch made at the same time, I couldn’t bare another major op, this minor one is bad enough.

Rigfht, I had better go and shower for the first time in two days – I know steggy but I really haven’t had the energy.

{January 28, 2009}   Take Down

Heading off to hospital this morning for my take-down – yay! I’m a little bit anxious but managing to keep a lid on it and just focusing on it all going well and this being my final day with Homer the Stoma!  I won’t miss it.  It has been good to me but I won’t miss having to get up early to shower and change prior to eating, I won’t miss having to change the bag full stop and I definitely won’t miss the itching!  It has been six months and although it feels like a lot longer than that, it is over now and six months with a stoma was a small price to pay to have my health back.  I know there are many people who have to have their stoma for longer if not forever.  If that were me I know I could have lived with it as it was still better than having UC, but I am definitely grateful to have the opportunity to have a pouch and fingers crossed it will all work well and I can put this behind me.  Time will tell.

I’ll update when I am back.

{January 17, 2009}   Dancing again

Blogland seems to have gone quiet. Clearly people don’t suffer from UC during the month of January 🙂  It’s nice to see Number Two back, although I mean that from a readers point of view, disappointed to see him suffering again.

Last night I went to my first West Coast Swing freestyle since before my operation, so seven months ago!  It was awesome, I had such a fab night.  Dancing now is like a completely new experience.  I am so much more relaxed and my concentration is so much better as I am no longer knackered and weak.  I don’t worry about having to dash to the loo so I enjoy every dance and weirdly my core strength has improved massively.  I think having it taken away from me gave me complete appreciation of how important it is and how much your core effects everything. I am definitely going to do more Pilates to improve it further.  It really was very odd to dance better than I ever have after a seven month break.

They think my takedown will be on January 28th, just waiting for confirmation.  I am looking forward to it now as I am ready to be rid of the bag and back to a completely normal life.  It is very exciting to think it could all be over this month.  I know complications can occur but I am positive that all will be well and soon enough I shall be sorted.

Time for a coffee (I can tolerate caffeine now  – yehay!)

{January 8, 2009}   Thanks!

I got the call from my surgeon today confirming that my pouch looks good and we’re ready to go with the reversal.  I just need to speak to his secretary to arrange – bring it on.

Since being diagnosed with UC I have been in the care of various medical professionals.  Whilst in London initially my experience was absolutely negative.  The only saving grace was my GP, Dr Patel, who was a star and helped me enormously.  I have found that a little compassion goes a long way and Dr Patel definitely had that.  My Consultant could barely speak English which didn’t help and worked in a massive teaching hospital which also didn’t help, but the fact that he was dismissive of my symptoms and quality of life was the worst thing and he made my life very miserable as a result.  For a long time I felt like I was being a bit pathetic and useless and this didn’t help ease my symptoms.

Then I moved up here and it all changed.  I was registered to the best team of gastroenterology professionals I could have asked for.  My Consultant Dr Dickinson rocked.  He is the warmest, most eccentric and lovely Consultant I have ever had the pleasure to meet.  Despite  the natural time restrictions on the NHS and the very busy clinics he held he never once made me feel pathetic, he never once dismissed my symptoms despite having a hard time finding evidence of the disease, and he has always rated my quality of life as extremely important and high on his agenda.  He was frustrated when he couldn’t get me into remission but God knows he tried and I know that he really did exhaust the options.  Most of all he just made me feel like my life was important and that eventually he and the team would make me better even if I had to have ‘the op’.  Having confidence in the people around makes this illness just a little less degrading and help preserve a persons dignity – that matters.

Dr Dickinson is supported by an amazing team.  I have been lucky to have had access to Specialist Gastroenterology nurses for five years and they Rock and Rock some more.  They have ALWAYS (apart from weekends 🙂 ) been on the end of the phone for me no matter what.  I could call them with the less significant to the more significant enquiry and they would always find an answer and sort me out.  Irene Dunkley has also aways rated my quality of life as important and has shown enormous care and consideration when caring for me.  Without fail she has sat at my bedside and done her best to make me feel better every single time I have been admitted to hospital – she didn’t need to, she chose to and she did always make me feel better. In clinic she has always done her up-most to help me and shown an interest in me, my life and my family, not just my symptoms.  These people don’t really know what an ENORMOUS difference they make to the human beings they help. They are not thanked enough and I am guilty of not thanking them enough but to be honest it is difficult to express yourself with such huge gratefulness to people who are so modest.

Irene has always been supported by Jane who despite not having me on her case load has always helped me on the rare occasions that Irene isn’t around and always makes me feel better.  I can’t see Jane without smiling as she always remembers my name and asks about my kids and checks that I am okay – i’m not even a patient of hers.  I smile just thinking about her and how kind she is.

The clinic nurses are always cool too, remembering my name and asking me how I am.  It’s silly but when you feel like shit and you are sat waiting for over an hour for your consultant this makes a difference :-).

When I had to leave the care of the Gastro team to go under the surgeon I definitely felt a sense of loss.  I don’t think they realise this but I saw these people at least once a month for five years – more often once a week! They were the people who understood me and my illness and made it real and acceptable.  It’s been odd not seeing them but don’t get me wrong, i’m glad I don’t need to.

I didn’t think I could be lucky enough to move on to a great surgical team too, but I did. Initially I saw my Stoma Nurse, Margaret Campbell.  Again, she explained everything I needed to know clearly and made me feel confident about the stoma and bag.  During my hospital stay, my bad hospital stay, she properly looked after me and made my stay more comfortable.  The one thing I was confident about during my stay was my bag and that was because of her.

Mr Beckdash my surgeon would probably be mortified if I described him as wicked, but he is. He cracks me up, he’s is quite stereotypically a surgeon but he has a cheeky sense of humour and a very gentle manner.  He is a fascinating bloke to watch on a ward round – the mixture of fear and awe on his students faces is hilarious and inspiring.  He is a very, very good surgeon and I hope he is rated as highly in his profession as I personally rate him.  Over the months I lost faith in the hospital, hospital administration, general nursing staff and other clinicians but despite some downs I have never lost faith in Mr Beckdash, it would be impossible.

When I listen to the awful accounts of medical professionals my friends are under I feel blessed and sooooooooooooo relieved that I landed here with absolutely the best Gastro team.  A good team of professionals behind you makes all the difference.  I try not to mention names on here, as obvously it gives away my anonimity which I cherish on here but those above deserve a mention.  Unfortunately I find it much easier to be gushingly thankful on here than infront of them – talking about someone behind their back is always easier 😉 I doubt they will ever read this so will never know but I put it out there –THANK YOU all, I am forever grateful, my family is forever grateful and thanking you could never be enough.


PS – Thank God no one I know in real life reads this, they might think i’m an emotional sap! I’m not good at real life sappiness so writing it down helps.  Just glad I don’t have to read it 😀

{January 7, 2009}   A New Year

I have twenty minutes to spare before I head to the dreaded dentist 😦 It looks like I have to have root canal surgery which is no biggy really but something I could do without right now! January has got off to a typically bright start 🙂

On a better note (although still quite dismal to some peoples minds!) yesterday I had my second scan and my pouch looked good amd healthy with strong walls this time – yay! I have to wait for my consultant to see the results and approve the op but it looks like I shall have my takedown this month.  I am hoping for the last week of Jan.  This last six week wait has done my mental attitude the world of good.  Having Christmas to think about and the holidays to relax and enjoy family time I now feel completely ready to face the op and think I can go into it without too much angst.  Six weeks ago I was still wound up about it all but I definitely feel more relaxed now.

Over the Christmas hols I had a few problems with my stoma which has definitely helped assert my positive attitude towards getting rid of it.  Having a stoma definitely enlightens you to how internal organs are affected by your general health.  Over the hols we all came down with a nasty virus (which was not ideal for my first healthy Christmas – sods law!).  Whilst I had this virus I was too ill to eat and drink much and as a result my little stoma became very little indeed and practically disappeared back inside my body.  I realised quite quickly that I had to make a huge effort to drink loads. As it had shrunk and I wasn’t eating much my effluent was really watery and leaking under the seal.  It was a nightmare, I had to change my bag up to four times in twenty four hours, twice at night.  I know it was just because I was ill but I definitely lost some love for Homer over those few days. I have also got steadily pissed off with my bag providers who keep messing up my order.  All in all, I am ready to move on now and be whole in stomach again (at least externally).

Despite these little glitches I had a wonderful Christmas and our Wedding Anniversary on NYE was fantastic too.  My husband and I got to spend some time away in a hotel just the two of us and it was absolute bliss. Hubby also had two weeks off so we got loads of good family time in and had loads of fun.  My biggest brother came home from Oz for a few weeks too which was great as we got to see him and he announced his engagement. I love spending time with my brothers and sisters and this year we had a big family party which was hilarious, it definitely ended the year well.

It’s wierd to think that this time last year I felt very low, in denial but knowing that I had to face this huge op and upheaval.  I never really believed it would actually happen until it did but now I sit here and it is pretty much all over and done with.  Last year my husband’s new years resolution was to just face whatever was thrown at us and get through it.  This attitude definitely helped as we had no expectations and just knew we would get through.  Having been through this ordeal I now know for sure that it doesn’t matter what is thrown at a person  we always get through it.  As long as we are breathing we have to keep going and eventually we will get to a good bit.  This year we decided on the same resolution.  I told my husband that I feel really happy and it told me that some people might think that is odd considering what has happened and what is yet to come but I really do feel happy  –  that operation has given me my life back and oh my goodness was it worth it!

Happy New Year! x

et cetera