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.

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

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

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!