Wednesday 21 December 2011

Pouchogram

Today I had a Pouchogram to check if my pouch had healed or sprung any leaks!  I was really nervous about retaining the liquid in my pouch and was worried I might have an accident on my way home, but all was fine.  The radiographers were very nice and considerate of the procedure and talked me through it.  I had to lie on my left whilst a tube was inserted up my bottom.  A liquid was slowly inserted into the tube and my stoma started to bubble.  I moved onto my back and then on to my right whilst they took more images.  It wasn't painful only a little bit uncomfortable.  The X-Ray images looked incredible, the J-pouch appeared to hold all of the fluid and no obvious leaks were visible.  The radiographers however will look at all the images collected more closely and the result will take a few weeks.  Afterwards I emptied my pouch a few times and the liquid smelt strongly of aniseed.  I'm really relieved it has been done and hopefully I will get the ok for take down surgery.  


Wishing you all a Merry Christmas :) 









Thursday 15 December 2011

Sleep and Counselling...yes please.

Why oh why!! Can I not sleep?  It feels like all of a sudden I have lost the ability to switch off and fall asleep.  Some nights it takes me four hours!  Oh my days!  It's not just me either, it seems my fellow UC'ers! and Ostomates are with me on this one.  After years on the dreadful Pred, which even when you are totally exhausted make you a complete hyper insomniac.  I have acquired bad sleeping habits.  It's not because I'm not tired, I am totally depleted of any energy by 8pm.  So why can't I sleep?  I went to the doctors about this the other week and a few other things, of course.  I was given a small course of sleeping tablets to help me get back into the habit of going to bed and falling asleep quickly.  I am determined not to go back to the doctors and ask for more as I feel, surely I should be able to get to sleep naturally.  My poor body has had to cope with far too many drugs as it is. 
     One huge reason is I am traumatised by everything that has happened and often at night can't stop thinking about it all.  Why did it have to happen the way it did?  Why was I left to be in so much pain?  How could a nurse leave me sitting in my own urine on a bed pan for nearly an hour? Why? Why? Why?  
So, I did the sensible thing and asked the doctor for some counselling. It felt good to admit I needed a bit of help and I feel better having just done that.  Hopefully this will help me conquer my fears and give me some confidence back.  I am a positive girl and I turn to God's love to guide me through this.  But even with the tools I already possess it is one could say not cutting the mustard! It Is never a stupid thing to reach out and ask for help.  
    As for the sleep, tonight, I will reach for the Bach sleep remedy, lavender drops and a deep sleep meditation cd and pray for a good nights sleep.


L x

Post Op Assessment

Hello Bloggers,

I went for my post-op appointment last week which went well.  I was full of cold at the time! which is typical for this time of year.  I've had it for about two weeks, I feel a little better one day and the next I feel awful again.  I have got over the worse now and I'm feeling better.  Back to the appointment! So I got to the waiting room which was becoming more and more full by the second.  I was weighed by the healthcare assistant and then I went and sat back on my seat reading my book.  The Prof was in the hospital but late for clinic, it was running an hour behind.  I was called by another consultant who took my appointment.  She asked how I was, "full of cold" I said!  I told her about my aches and pains.  She questioned me about my weight as I had lost my pre-op month of gluttonous cake and protein supply!  Doctors always keep an eye on significant weight change, especially now I have a loop illeostomy which absorbs less.                                 
She was a very nice lady and made me feel instantly at ease.  She looked at my scar,which has healed well.  All went well and she filled the form for the x-ray department for me to have my pouchogram.  At the end of the appointment she asked me if I had any questions? Yes I said, "not in order of preference" I said, but "Can I go in a hot tub? Can I have sex? When can I go horse riding?  I know, I know, priorities people!  The answer was yes to all apart from the horse riding, which I think I will leave until the summer.  

Happy digesting people. 

L x

Sunday 4 December 2011

I knew it, Housework is bad for you!




I have had a cold for most of the week and also a nasty coldsore! which looks like a cornflake on my lip, not my finest look, that's for sure.  So yesterday, as I was starting to feel better I thought I should try and get on top of the cleaning.  I spent a few hours cleaning away and was proud of my achievement.  I then had a rest for a few hours to balance things out and then couldn't resist going out to by a Christmas tree.  Which we got home on the bus!  I know, but needs must.  It was all too much really so I spent the evening suffering with awful pelvic pain and pain up my fancy bottom!  So I have come to this conclusion:


Pinned Image
http://www.cafemom.com


























It's obvious my J-pouch does not like cleaning, so I will do my very best and give up housework!  Like that's a chore!  So my new motto is this:

Pinned Image
Unknown


Ah...that's better :) x

Thursday 24 November 2011

Support Crohns and Colitis UK

A Child is Born




I have just ordered my Christmas cards from Crohn's and Colitis UK, it's a great way of supporting them.  They have a lovely selection of cards and gift wrap for you to snap up, so go here:

https://nacc.org.uk/payment/shop/shop.


Last order date is Monday 5th December.


So grab your self some festive cheer and do a good deed in the process :)

Monday 21 November 2011

Staples and Stitches



On Friday I  had a very interesting experience I won't be forgetting in a hurry!  I went to the toilet! as you do! my pouch was feeling full and so was my stoma bag, so I went to do the necessary things when something made me go OUCH! O er misses!  Staples were coming out of my bottom :)  Yes people I am a human stapler!!  I was overwhelmed with panic at first and then after a second of realising I was ok and my new designer bowel wasn't going to fall out of my bum into the toilet, I was bursting with pride!  An experience not everyone has (luckily) but it is quite funny when you think about it.  So I sent a proud text to my boyfriend!! poor bloke.  I can report everything feels fine, I have had no more staples and my output is clear and blood free.  Woohoo! Blood free people, hoorrrayy!


Then on Saturday when people with energy and social lives are glaming themselves up for a night out.  I'm in the loo! AGAIN! Changing my stoma bag, Roo gets uncomfortable after two days, when a bag changes become a must.  Looking at my new stoma and inspecting the skin around it I realise that half my stitches have just fallen out on there own accord.  Whilst cleaning her up the rest of them fell out too.  So my body is on a roll and getting rid of these little invaders.  


My wound however has an annoying habit of tricking me into thinking it has healed and then re opens! Not a lot though, I don't want to be too dramatic, only less than a cm.  So again I've wiped out the steri-strips to get this wound closed up for good.



Wednesday 2 November 2011

Welcome ROO!! Who does lots of POO!!


On the 10th October 2011 Roo my Loop Illeostomy was created by a team of brilliant surgeons and on that day my j pouch was created! Well every Roo needs a pouch.  I have mixed emotions about my new stoma, I feel it has been acting like a baby, it demands so much attention, I eat and it poops A LOT!  After my new stoma was made the skin around my stoma separated, this has been really hard to deal with.  Having a wound that is very raw next to basically an erupting volcano spitting what seems like molten lava has not been pleasant.  I also have a very high output, which adds another factor in to its care.  Once out of hospital my bowels that were very sluggish decided to wake up and have been very active since.  This is very normal with a loop illeostomy because the stoma is much higher up in the digestive tract. It is something I am still learning how to manage.  My community stoma nurse came to see me last week to help me, I was told I may need Silver Nitrate treatment but because of a few changes and another week praying things will heal, they are.  My stoma nurse was very happy with my progress today and said she was pleased with how I am healing and gave me the lovely words... “Your fine, I won’t need to do anything”.  I am thrilled, it feels like I am seeing the light again, with regards to my skin.  It needs a few more weeks to be in tip top condition but it is getting there and is feeling so much better.
                I would suggest to anyone having difficulties with their skin or stoma to get in touch with their stoma nurses, a few changes can make a huge difference.  I am now using a more convex bag, which helps to protrude the small stoma I have.  I also now wear a belt, which works on the same principle of holding the bag closer to my body keeping the stoma out and away from my skin.  I use the amazing mouldable seals, which are quite frankly a God send, they are fantastic.  All of these things combined are really helping things to heal.  One of the best products with separated skin or sore skin is ostomy powder.  Apparently if you put it on and it holds and doesn’t fall off, it is a sign that it is the right time to use it.  Obviously less is always more, but sometimes you need that extra bit of help. 
Today I have been given Absorba Gel, a solidifying agent which will help to thicken my watery output.  They are small packets that are popped into the bag.  So far it has helped and emptying my bag seems less daunting when it isn’t so watery.  I have also been taking Loperamide every day, some days I need to take more other days less.  I just take each day as it comes and slowly I will get there. 
I am still very sad about losing Winnie and when I admit this I think I must be mad, and to some of you reading this you might think why on earth would she miss that!! But I do.  I am slowly getting used to little Roo and her demands on my body and on my patience. 
Wishing you all health and happiness.
Lx

Tuesday 1 November 2011

Home Sweet Home


Hi,


 Well I'm back home (thank goodness!)
Here’s what happened:

I woke up around 05.30 to get ready and make sure I was up and ready to have my pre-op drinks, these were lemony and not too bad actually.  We arrived at the surgical admissions lounge with about 25 other people, all of us looking worried and tired.   One woman was so loud and obviously very nervous that she was offered a pre op relaxer!! Haha.  We sat down and started to twiddle our thumbs so out came the crochet.  It really has such a calming influence on me, it worked wonders and I managed to crochet a few snowflakes for my Christmas decorations. 

I had my bloods taken by a junior doctor, the nurse took my blood pressure and did a pre op assessment on me.  The anaesthetist came and discussed pain relief etc.  Then a surgeon came to see me, I was very nervous by now and I had not seen him before which unsettled me.  I asked him when I would see the Prof doing my op..he replied that I would be under anaesthetic by the time he was there.  Obviously I hadn’t met this lovely doctor before and he hadn’t met me, because I shocked him...I said “I’m sorry but I will not be having any anaesthetic until I have seen his face!!!!” I really don’t mean to be difficult but I was so nervous and wanted to make sure that the Prof and no one else would do my j pouch.  The lovely doctor got on the phone and the Prof arrived.  I was happy.  We went through everything, and I made sure he realised that I really only trusted that only He was the man for the job.  I mumbled neurotically and blurted out, “but, I will have a baby wont I?” to which he replied “Not today”.  We all laughed! Obviously having complex pelvic surgery may have implications on my fertility, one of my biggest fears.  He said that there is always a risk but most j-poucher’s go on to have children.
I went to the toilet one last time and had a look at Winnie, I was actually talking to her in the toilet! Mad I know but that’s what I did.  I was called to get changed into my sexy gown and even more attractive stockings! My boyfriend and I walked down to theatres, once at the door we had a farewell cuddle.  I then had to sit near the theatre for about 45 miniutes, which was stupid really, but I was so tired by this time I shut my eyes and tried to relax.

Once in the anaesthetic room I was chatting away and we were even having a laugh.  I had one last look at Winnie and told her I loved her.  I wasn’t nervous at this point at all, I was actually looking forward to a good sleep! Haha
My surgery went very well and lasted about 4 hours (I think?) I had a long sleep and didn’t wake up until I was in the recovery room.  I was hooked up to a PCA (Patient Controlled Analgesia) and then moved to the ward.  Where my lovely boyfriend came and soothed me, I was feeling quite panicky because I felt like I couldn’t breathe properly, apparently I was having only 7 resps per min.  This eventually got better.  He stayed with me for as long as possible and I spent most of the night asleep. 

My second night after surgery I woke up because, my bottom had leaked mucous all over me! I got cleaned up and the nurse changed my bed and came back with a nappy for me to wear!  I know the drill by now. I couldn't feel anything until it was already out of my bottom but after a few days, I got some feeling back and could feel when my pouch felt full and I always managed to get to the toilet and relax my muscles and then empty my bottom.  I am so chuffed that even at this early stage I have good control over my new and improved plumbing.

My recovery was going very well until my bowels got very sluggish and stopped one night, which was excruciating.  I was vomiting whilist holding onto my stomach for dear life, ouch! I was given an injection of anti sickness and my bowels eventually kicked back in a few hours later. 

My stoma nurses were once again fabulous and very supportive.  The loop illeostomy is completely different and my stoma nurse suggested a name! Which is ingenious and will be revealed soon.

I didn’t manage to eat much at all during my hospital stay, mash potatoes and cuppa soup being the firm favourites.  I drank as much peppermint water as they would let me have, it really is a god send and soothed my angry bowels.  It felt like a hug in a mug. 

I felt very emotional at times, and when the curtains were drawn around my bay I would have a cry to myself.  I was caught one day, mid tears by my Enhanced Recovery Nurse, she was so lovely and supported me.  It’s only natural to be tearful after this sort of operation, it also bought back a lot of painful memories of the last time I was in hospital for my emergency colectomy. 

I tried my best to keep my sluggish bowels going by nibbling food and drinking and walking around the ward like some mad woman.  Walking although hard work and painful really helped to keep the bowels moving.  I was more than happy when my stoma made loud noises because it meant they were working.

I got home 9 days after my operation and getting into my own bed was absolutely blissful.  I had cuddles and hot water bottles and my bedroom was so dark and peaceful compared to the hospital.  I wept and wept with sheer relief.
Love L x

Sunday 9 October 2011

Letters: Good Bye Winnie


My Sister wrote me a funny letter the other day with an old writing set she had forgotten about, she thought it was highly appropriate! It did make me smile.




Hmmm She knows me too well!  I was crocheting when her letter came through the letter box :)


Tonight is the last night Winnie will be pooing away in my bag, I have had my dinner and I am allowed to have a piece of toast before I go to sleep.  Then I will wake up really early and drink my Pre Op drinks at 6.00am.  I will then make my way to the hospital and the surgical admissions lounge.


I have been very upset for the past couple of days and have done a lot of crying, I admit.  I am very scared, I can't deny, but I am also positive and geared up for this.  I don't expect it to be easy but I will try to remember that God wouldn't give me anything I can't handle.  I have put my faith in God.  I pray I will continue to have the strength to cope with the operation and what may come because of it.  I feel very anvious and nervous but I am also looking forward to having the last part of my disease removed from my body.


Worrying about tomorrow, will only take away the Peace of today.


L x

Monday 3 October 2011

J-Pouch surgery in one week!! EEeekk!!

I knew these three weeks would fly by and they are. Only one week now until Jpouch day.  I woke up with terrible pain in my bum today and had a lot of blood and mucous to discharge.  Once this was dealt with I was fine and enjoyed a lazy day.  I have completed my pink baby blanket, so that was very happily ticked off the list.  I have now started a project for me :) I am crocheting myself a cushion to take into hospital, I thought it would be a nice thing to have to cuddle and cheer me up.






I have been busy chatting to my friends on the Colitis  Facebook page today, its great how supportive people are.  You always come away feeling that there are people that really understand how you feel.  You also get the information you really want to hear and appreciate.

I have been slowly sorting my little flat out, as I know I wont be cleaning for a while! one of the perks.  I am getting ready practically, physically, mentally, emotionally, spiritually.  Haha! No wonder I'm tired.  I feel I'm in a good place though, I am positive and upbeat and can't wait to be rid of this last bit of disease.  I'm sure I will weep when my doctor first declares me disease free.  What a journey...oh! I could officially be an X Factor contestant now...its one of the requirements.  The ability to sing is way down on the list but if you have  been on a journey your in! haha!

I am officially rambling now.  Hope your all well.

L x

Friday 30 September 2011

Confessions of a Crochet Addict

I admit it, I put my hands up!!! I am addicted to crochet!! Oh to enjoy a little hooky goodness.  Quite simply it’s delightful.  It has been lovely to teach myself, I have just about grasped the basics but I still have a lot to learn. Most of the time I feel pretty useless, not being able to work and getting tired very easily, so it’s nice to do something I can enjoy even when I’m laid up in bed.  It’s great to make something and feel a sense of achievement once it’s completed.  However, I am also addicted to starting projects, before I have finished one I have probably started another two.  But with my operation now only 10 days away! I have prioritised my crochet.  So I have been crocheting everywhere, on the tube, on the coach, on the bus and at home, obviously J 









                                                                                                                                                                                                                                                   










My big sister is due to have a baby in a few weeks time, which I am so excited about.  I am so convinced it will be a girl so I have been making a beautiful pink blanket.  Probably a bit silly, but I have a 50% chance I will be right, so I’m going for it.  If the baby is a boy, I will very happily make another blanket.  Woo hoo!!  It will give me an excuse to buy some lovely blue yarn.








                                                                                                                                                                                                                                                                                             








My little sister is completely bemused by my crochet love, and thinks I’m a complete granny!!! Granny Chic I call it, but she likes to mock me, I don’t mind, she is kind of right and very funny. 
































                                                                                                                                                                                                                                         


I knitted the baby mittens with the help of my mum, I know the basics of knitting but this is the first time I have tried rib, decreasing and increasing so it’s a good project for a beginner like me. I would like to knit or crochet a whole baby outfit, but that would mean starting a new project and I really should finish what I’m already doing. Who am I kidding, like that’s going to happen!










I can’t wait to have a cuddle with my new niece or nephew.
Lx 

Monday 26 September 2011

Inspirational People


Throughout this journey from first diagnosis, to managing UC, during flare ups, to having surgery and during my recovery I have gained so much from reading other blogs and websites.  The internet is fantastic for gathering resources and gaining knowledge, it enables me to see sense of the things I don’t understand.  But most importantly I have been inspired by the writers and the people willing to share their stories however personal and that is a gift to be thankful for.  I would like to mention Dennis and Nadia who are over on The United Colon Vlog , http://ucvlog.com/ I am so grateful that during a particularly awful day I discovered their videos on YouTube.  When I wasn’t sat on the toilet seat I watched the videos and began to see that I, like them, could manage this and having a stoma really wasn’t so bad.  I watched their videos and got acquainted with the idea of myself having a stoma and how I could make this a positive thing.   I never really told people I was preparing myself for the possibility of having a stoma, but I knew it, in my heart, I knew my body and colon could not keep going and I began to feel that this previous alien concept of having a stoma could be a reality for me.  I was determined to be prepared, and I am so glad I did.

 I was not really coping with my colitis and had an extremely nasty flare up at home and was rushed to hospital in an ambulance.  I stopped breathing, my temperature was 38.6 and my CRP level was around 300.  I had a colonoscopy in the hospital once they had stabilised me and was swiftly greeted by a surgeon as soon as I reached my room.  I don’t really think I had much of a choice, my colon defiantly needed to be removed, but I ultimately had to give INFORMED consent.  Which I did very gladly, I had my emergency colectomy about 12 hours later.  During which I continued to be in excruciating pain and on the loo with blood pouring out of me.  This was obviously not the best time to be looking into stomas and surgery etc, which is why I will never forget Dennis and Nadia for the rest of my life.  Two strangers who have helped me greatly, who have inspired me and given me hope.  I continue to watch their useful videos and this helps me to feel more prepared.  I prefer to know what could happen rather than be in the dark.  Knowledge is power.

So, although I’m sure lots of you have stumbled across Dennis and Nadia, I hope that if you haven’t you now know where to reach them.  Hopefully you will find their videos and articles as helpful as I have.

On the right hand side of my blog, you will find a list of useful websites and blogs that I read.  I would like to mention Hannah from SemiColon http://hannah-semicolon.blogspot.com/ who is also another inspiration; I think she has been through it all, but my goodness whatever is thrown at her she keeps on smiling.  We can all groan and moan and shout and be angry but when life is throwing some hard stuff at you and you can still believe and still be positive, that is truly inspirational.  Also she has the best t-shirt ever... http://hannah-semicolon.blogspot.com/2011/09/operation.html#comment-form which I SOOOO want for my next stay in hospital...how hilarious...you have got to laugh.  Sometimes laughter really is the best medicine J
I’d also like to forward on the request to pray for Nadia who is again, unfortunately in hospital, it seems her disease is very stubborn so I pray that she will recover quickly and that the staff around her make her better and as comfortable as possible. 

I hope you all have a positive and inspirational day. Lx

Surgery in two weeks

This time in two weeks I will probably be in a recovery bed, after having my rectum removed, j-pouch and loop illeostomy constructed. Wow!!! that's major!  I got the call a week ago and I am feeling a mixture of emotions ranging from, nervous, excited, scared, happy,annoyed,angry,sad,overwhelmed.  Mainly I am nervous, but I am trying to be courageous and keep positive      Worrying will not change the outcome only use up my precious energy, so I am trying to give up negativity and think about all the positive things.  Like how for the first time in years I will be able to say I'm DISEASE FREE!!!! How good does that sound.

Ultimately I have made an informed decision that I am happy with and that is the most important thing.  I am well aware of the complications but to me its worth a go...I could be one of the lucky ones and this time next year could be writing about how my j pouch is working out for me...and telling you all the joys of butt burn!!! haha...that would be an interesting read.

I really want it too work, but if it doesn't I would live a content life with a stoma, in fact that is my main reason for being so upset.  This may seem ridiculous to some people but I will mourn my stoma going, I love Winnie completely..she has totally saved my life and given me back ME!!! Lets hope this new stoma behaves just as lovely as Winnie has...a new name will be revealed when I have my new stoma :) yes people I'm a little mad, but it keeps me smiling.

I hope you are all doing well.

L x

Tuesday 23 August 2011

A Bum Deal :(

So here it is, I’m writing it down and actually acknowledging that my bum REALLY hurts!! Apparently my doctors thought my proctitis would be fine now I’m not using my bum anymore.  I never was convinced and asked if I could do suppositories if needed.  It seems I have reached the point where I must tackle this.  I have been feeling pain and have been emptying my bum of a lot more blood than usual.  I feel upset that this is still happening but I will try and get on top of things.  Suppositories may just be the answer, but I was so enjoying leaving my bum well alone.  It really is a relentless, stubborn, nasty and cruel disease.  If I was listening to a friend saying this I would tell her, “You can’t just ignore this and think it will go away, do something about it.”  So I will heed my own advice and sort it out.  I really want it gone (my bum), sometimes I don’t even think I want a j-pouch, I just don’t want to have to make these decisions.   Oh dear! the pity party may just have arrived, oh how I hate a pity party!  I need a slap around the face, get a grip.  It’s only a sore bum, if I can cope with my colon trying to bleed me to death then I can cope with this.  I think a call to the consultant and a push for a date for surgery, or a gentle reminder that I’m still here coping with all this, is definitely in order.   Well I’m off to buy some KY!!! haha

Sunday 7 August 2011

It’s my party and I’ll cry if I want too.

Well technically it wasn't my party, but a friend’s.  It was a great day despite crying before, during and after the party.  It was a significant step and a realisation of how far I've come on my UC journey.  A year ago I would not have been well enough to attend such do’s.  It was emotional for me to see childhood friends, which six months ago I never thought I’d see again.  Before the BBQ there was a tennis tournament and I sat on the bench in the courts watching the boys and girl! playing.   It was great, I sat comfortably without pain and without the fear of needing the toilet NOW! I didn’t need to be dosed up on drugs and I didn’t have diarrhoea.  Winnie (my stoma) took care of me.  It was a simple thing, just sitting there watching them all play tennis but it was an extremely wonderful moment of realisation.  That I’m so blessed to be alive and well, and to live in such a lovely part of the world with lovely friends.   
                I was worried people would see me differently now that I have a stoma, but they don’t.  It’s still the same and they are genuinely so pleased to see me look so well.  I was having a crisis of confidence in the morning, which is normal when you go through something like this.  I am having difficulty with my body image at the moment, and I’m working on getting my confidence back.  I still want to feel desirable and attractive, I’m still a passionate woman even with a stoma.  Why should I not be.   I find it hard to understand why my boyfriend would still love me, which is absolutely ridiculous as I know he does, we are childhood sweethearts.  In fact he has said to me, that he really didn’t like my colon one bit, but loves Winnie.  She has turned my life around.  I’m sure most ostomists go through this period of acceptance and adjustment.  Healing emotionally takes a lot longer than the physical side of things.  So my advice to myself and to others is take time, cry if you need to and remember you don’t have to be strong all the time, being vulnerable isn’t a sign of weakness.  It takes great strength and courage to be true to your real feelings.  

Friday 5 August 2011

Toilet Roll Art

Hi,


I'm having a fabulous time looking at Pinterest http://pinterest.com/ at the moment, it's a virtual pinboard and great for getting inspiration.  I then came across some toilet roll art, and when I saw it I thought of you guys.  We all know as UC'ers or Ostomist's, we can get through a lot more toilet rolls than most.  You can find instructions and the source of this ingenious art from Tip Junkie.  
http://go.tipjunkie.com/dc/1016/www.justagirlblog.com/2011/05/art-of-toilet-paper-roll.html 


This may be just the perfect project for you.  Enjoy x

Thursday 4 August 2011

Why I don’t miss my Colon

  • Im not on the loo 24/7.
  • I can take a stroll along the Thames.
  • I can wear skirts and dresses.
  • My hair isn’t falling out in clumps anymore.
  • Im not in pain all the time.
  • For the first time in two years I don’t have chronic diarrhoea.
  • I don’t have that need to go now feeling.
  • I feel healthy.
  • Im not on high doses of steroids.
  • Im not on immunosupressants.
  • I don’t have to do enemas!!! Woohoo thats a big plus.
  • I spend more time with my boyfriend, family and friends.
  • I had a curry the other night!!! can you believe it.
  • I enjoy food.
  • I am much happier.
  • I can go to the cinema and be in the middle of the row, I enjoy the film without fear of needing to go to the loo.
  • I have more control over my body.
  • I can organise to do things, knowing I will be well enough.
  • I think I might actually be able to be a mum one day.
  • I appreciate life so much more.  Everything seems more beautiful.
  • I feel closer to God.

Tuesday 21 June 2011

Hello World :)



A big hello and welcome to UK, USA, Canada, Australia, Germany, Spain and the Netherlands!!! It seems UC is determined on world domination, but it’s nice to see people from all over the world checking my blog. I hope your enjoying the read and if there are any topics you would like me to cover or any questions you have, just ask. 


 Wishing you all a very happy and disease free day x

Retail Therapy

Since my colectomy I have been on more shopping trips than my bank account cares to remember.  Woohoo! gone are the miserable days sat at home hopping from loo to sofa,loo to sofa, loo to sofa! You get my drift.  The greatest gift that comes from my lovely Winnie (stoma) is my new sense of freedom.  I can venture out and enjoy life without the worry of the “I need the loo NOW” feeling.  Winnie has also given me the perfect excuse to go shopping, I was fortunate to be sited with the perfect place for my stoma by a stoma nurse.  Some ostomates are still able to wear their usual clothes or others purchase underwear and trousers from ostomy clothing stores which you can find online.  I find normal clothing uncomfortable to wear, as it is my preference to have trousers, jeans etc to sit over my stoma bag rather than let the bag sit over my clothing.  I also tuck the bag into my lovely French knickers which are big, but beautiful and if you didn’t know and I decided for some reason to walk around in just my underwear you would never even know I had a stoma! Not that I’m keeping that a secret.  Leggings have become my favourite item, and now maternity clothing.  I do feel a bit silly buying maternity clothing when I’m not in the family way but hey ho!! Who cares?  Not me.  Maternity jeans are perfect the stretchy fabric sits comfortably over my bag making me feel more confident and secure.  Also for the first time in years I now wear dresses, which makes me very happy.  I never had the confidence to wear dresses with UC as I was constantly worried I would be incontinent, I felt safer with jeans.  So being back in a dress is truly wonderful. 
Happy Shopping People.
Lx 

Friday 20 May 2011

The waiting room

Today I sat in the waiting room of Clinic 2 and my eyes filled with tears.  Sitting opposite from where I sat the last time I was here, I can almost see myself.  A girl so exhausted, so in pain and so desperate for help.  During the forty minute wait for my appointment, I went to the toilet six times!  Bloody, mucousy poo and PAIN!!!  I want to go into the past and give myself a hug and say “don’t worry, keep strong one day it will be alright.”  And today it is, I woke up emptied my bag, had a shower,got glammed up and enjoyed my breakfast.  I made my way to the hospital without the worry of being incontinent.  I got off the bus and confidently walked into clinic, the fact I first walked into clinic 3 instead of 2, was due to my sheer giddiness of meeting my new consultant.  I asked the receptionist if my old consultant was lurking around, she said no.  Thank goodness, that would have been too much to bear.  
My name was called and I walked into the examination room! Great I thought.  I could see all the equipment required for a rectal exam, oh fabulous!!!  I raised my eyebrows as my eyes were averted to what can only be described as an implement of torture!!  I looked for the canister of entonox, but obviously there isn’t any because to quote many a doctor “ it doesn’t hurt” well, I for one would like to shove some thing like that up there arse and see if it doesn’t hurt. 
Then the moment of truth, in walked my new consultant.  I instantly liked him, we then went through everything.  “You have ulcerative colitis” thanks for reminding me doc… “ you still have part of the diseased colon and rectum which I will take out” woohoo I want to kiss him.  We talk in detail about what will happen, how I can proceed, it’s up to me.  So I am a candidate for J-pouch surgery currently on the waiting list.  Feeling a little apprehensive about it but also a little excited!  I must be mad.

Monday 9 May 2011

What you blogging on about?


I would suppose that if my sister is reading this blog, she would squirm at my spelling mistakes and grammatical errors.  However, I’m sure she would quickly forgive all of my literary faults because she would know I had genuine heartfelt reasons for my endeavours.  So what am I blogging on about? 
Well, I didn’t have a lovely doctor who prepared me for the possibility of surgery, what it would entail and how people live with a stoma.  Instead I did all of my research from the comfort of my sofa on my wee laptop, looking at blogs and websites to answer my thousands of questions.   I am so glad I did, my preparations enabled me to deal with my emergency surgery and I believe really aided my recovery.   Knowledge is power and all that!   It’s much easier to research the medical implications than the emotional side of dealing with life without a colon and life with a stoma.  Questions like:  Will my boyfriend still love me, find me attractive? Were on the top of my list, the answer is yes he does.  In fact having a girlfriend who is not constantly in pain and on the loo is definitely preferred.  These are genuine questions a person can have, when the prospect of a stoma is a very real one.  How will I feel with a piece of my intestine poking out of my stomach? Is not a question you can really find in a text book.  So this blog is a hug to all of the UC’ers out there.  Hopefully by sharing a personal insight into how someone actually feels with UC, surgery and life with a stoma, I can help someone. The next phase of my personal journey will be an open book, how I’m feeling, what j-pouch surgery is like, the recovery etc.  Because for a lot of us ex-UC’ers once we have had our colon removed, which is major surgery and one of the toughest things to get through, the prospect of having more surgery seems daunting.  In fact on a daily basis I think to myself that, if I feel so well and actually love having a stoma, why would I want to put myself through more surgery.  But for me, I do feel it’s the natural step however scary it may seem.  At this point I think of my boyfriend who always wants to know what’s around the corner, which can lead to some interesting walks.  In a way that’s what I want, I’m curious to see what life could mean for me as a j-poucer.  So to quote my brother now that I’m spending less time on the bog I can spend more time on my blog and hopefully by doing so I can help someone who is going through the same thing. 
Wishing you all a happy and disease free day J

Friday 6 May 2011

Blog roll

Quilted, embossed, coloured, scented, 1ply, 2ply, recycled, strong, soft, moist, eco-friendly, luxury, standard, cushiony, ultra-cuddly! I know the last one stumped me too.  These words are all used to promote the common bog roll, toilet paper, dunny roll, loo paper, bum tissue whatever you want to call it.  The reason for this post is today’s revelation, I live in a household which currently has one spare loo roll.  This would never have happened when I had UC, as I would generally have a whole cupboard filled with the stuff.  Is this life as an ostomate? Wow I love it.  Ok, so it’s not much of a big deal, but it really represents something massive for me.  It highlights the fact that after a two year long flare up, I am no longer on the loo 24/7.  
There is much debate within the UC community, for and against surgery and it really is a personal question that only one person can answer, you.  For me, I had to have surgery, it was a must and I’m so glad I did.  The only regret I have is that I didn’t have it sooner and as a planned elective surgery rather than the emergency situation I had.   I consented to surgery and 18 hours later I was in theatre.  I spent most of those 18 hours, in absolute agony and running backwards and forwards to the toilet, whilst negotiating the drip stands which were plugged into the wall which meant sitting on the loo with my canulated arm stretched out so I could reach the toilet.  It hadn’t even dawned on me that, this night would be the last time I would poo out of my bum for a while or ever.  Believe me, I do not miss it one bit, I completely love my stoma, whom I named Winnie (The Pooh).  In fact one of the first things I said after coming around from my op was “I love my stoma”, and I really do. It has completely saved my life and if I have to have a permanent stoma I will deal with it, and enjoy a fulfilled life with a smile.  
 I am a little apprehensive about j-pouch surgery, but I know there are so many success stories out there that I am going to be positive that I can be one of them. I am seeing my next surgeon in a few weeks, so will keep you posted.  Now, I really should stop blogging and go buy some bog roll!  


L x

Tuesday 3 May 2011

An IBD, IBS Play

Me: “I have an IBD, UC”
Village Idiot:  “oh you poor thing, I’ve got IBS as well, your poor tummy.”
Me: Hold breath and count to 10.  1,2,3, Arrggghhh!

Itis


A few weeks after my operation to remove my completely inadequate colon, my brother asked me if I was in any pain!  Bless him, I don’t think he was quite prepared or ever thought he’d hear me say very sarcastically.  “Oh yeah, apart from my rectum throbbing away at me!”  It seems if a disease or illness has got an ‘itis’ at the end of it, my body just can’t help it’s self.  So it was great when they said you have Proctitis, very typical of UC sufferers.  How wonderful, not only was my colon inflamed but my rectum also.  This led me to shock another unsuspecting person, with a remark to my surgeon just before I was being discharged home.  “I can’t wait for you to get this stupid rectum out of me!”  With a quick disbelieving look at me as if to say, did she really just say that, he then smiled.  To look at me you would never assume that this would be my reality, let alone flow out of my mouth so easily.  It’s like I’ve just said the most normal thing.   Luckily for me I do not get easily embarrassed.  I’m embarrassed by things like singing on karaoke not that I’ve done that in years, but I’m so used to pulling down my knickers for some doctor to shove a camera to infinity and beyond! I don’t bat a pethidined eyelid.   There is light at the end of that inflamed tunnel, I will soon have my next operation to remove that red rectum.  Although ironically being in stirrups for so long during my first op left me with bursitis!

Tuesday 19 April 2011

UC It's Still Me

Coping with the practical side of colitis, which for me that meant bowel movements of at least 6 to 20+ was nothing but a constant mission. The day is filled with going to toilet, thinking about the toilet, or finding a toilet very quickly.  I never knew I could run so fast until I was threatened with the need to go NOW! feeling of colitis.  It can consume your every thought. It’s important to not lose one’s self to an illness or disease, which I have admittedly a few times, but I eventually snapped out of it.  I used to be so exhausted from it all, that I had days where I hardly spoke to anyone.  For me that is a miracle, I am generally a very chatty, exuberant and somewhat opinionated person.  Always willing to share my thoughts.   UC is an awful disease as most of you who are reading this know all too well.  You can’t help but change a little of who you are but, you are not your disease, you are so much more than that.  You are still you, and I am still me. 

Welcome to UC It's So Long Colon!

Welcome to UC it’s so long colon, this is my first blog so please bear with me.  This blog will shed some light on what it’s actually like to have UC.  I hope by sharing my experiences and thoughts I can turn even the grumpiest UC’er into a smiling one.  I laugh in the face of my disease and hope you can too.  I will also chart my journey through J-Pouch surgery and my quest, all in the name of POO!  Happy Reading.