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:

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:

Unknown

Ah...that's better :) x

Welcome ROO!! Who does lots of POO!!

On the 10^th 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

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

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

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.

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