Monday, 17 June 2013

Margaret & I's First Argument and a Goodbye

Hi Guys

So me and Margaret have had our first falling out. We are no longer talking.
I am writing this at 2am. I have yet to really go to sleep because Margaret is driving me crazy. She is so uncontrollably itchy I am struggling not to rip the bag off and attack the area with a toothbrush. I have tried everything to distract me and am now sat up, writing and watching Sliding Doors. I don't know why it is so itchy! Knowing me I am allergic to the sticky wafer, although the area is not red or inflamed. I think it may just be having something permanently stuck there; my skin can't breathe!
It doesn't help that I am also in a great deal of pain, meaning the moment I touch the bag or the area around Margaret, it feels like I am attacking a bruised, open wound... I guess I am really.

I seem to attract complications. My immune system is completely shot due to taking immunosuppressant drugs for years and not absorbing properly for a long time. I have also been on steroids since last December which means my body struggles healing itself. Because of these two factors even though the stitches have dissolved, the skin around Margaret has not healed, leaving me with a gap. Over the past few days, this gap has widened, leaving an open wound. On a recent bag change I also discovered that my skin had torn; clearly it is under a lot of pressure and has now split. No wonder I am in so much pain!! Margaret is also wanting to play a little game of hide and seek and has started retracting back into my body, never a good sign. Luckily my stoma nurse will be here in 12 hours time! I know I can't be dealing with this pain and itching much longer.

I think in my head this is all still temporary & will be being taken away soon. It is as if I am in some weird denial and haven't accepted that this is my life and that Margaret is real and is here to stay. I don't think it has helped  that I still haven't been able to get back to my normal life. Everyone keeps telling me that it all gets better, I soon won't think twice about having a bag & I will get my life back. It is a struggle to believe any of this at the moment.
Frankly, I am bored out of my mind. I am not allowed to drive, am exhausted after a short walk and spend much of my time in a lot of pain. I seem to alternate between my bedroom and the lounge with nothing much in between. I have wonderful friends who have visited me, and the delivery of cards or flowers always makes me smile but I feel like I spend much of my time on my own. Even though I have gained a buddy in Margaret, it also feels pretty lonely.

My hair is also driving me insane. I am used to very thick, curly hair & right now I am left with a dry, brittle mess. I know this is because I haven't been absorbing nutrients for months but it is still incredibly frustrating! It is also falling out like theres no tomorrow. This seems to happen to me with some Crohn's flare ups; but not all of them. The first year, when I was diagnosed, it was so bad I had to wear bandanas to hide the balding patches. In recent years it wasn't too bad but this time it is thinning out a lot.
We don't know why it does this. Some say it is due to the lack of nutrients, some say it is a side effect of the steroid treatment. Others have thought it is due to the huge amount of stress my body is under. Now I am not one to cry or rant or get angry; I rarely voice any frustration about the Disease. My hair dresser once questioned whether my hair loss was my bodies way of releasing all of the stress, trauma and anxiety. All I know is if it continues as it is going now, I am not going to have much left! Just another thing I have to deal with eh!

I have also recently found out that the sticky bit of the bag (the base plate) is also referred to as the FLANGE. A word I can't stand! It is now up there with 'moist' as my most hated words... It makes me shiver to think I have a 'flange stuck to me'!

Now moaning aside (I'm so sorry by the way, I just realised the above sounds like a long depressive ramble), but on to the brighter notes in my life!
My knee is much better! Even though it is still a bit stiff I can now bend it fully which is the most brilliant feeling. I still can't kneel but I can now, just about, walk up the stairs properly - if not a bit slowly. This does mean that despite the pain, I am a lot more independently mobile!!

I also owe you all the biggest thank you, I am just 300 tiny views away from reaching 20,000! Which is just incredible, my blog has only been going just over a month so I am completely blown away by how many people have read it. I can't thank you all enough. I am going to celebrate hitting the big 20,000 with a bit of a blog re vamp - make it extra pretty for you all and maybe have a lovely guest blog post!

I also have some bitter sweet news, tonight I left the house past 5pm to have a lovely girly meal with some of my closest girlfriends. I tried to dress up, cover up the many bruises I have all over my arms from being a human pin cushion, slapped on some make up for the first time in months and took Margaret out for her first girls night. The reason behind the meal wasn't so great. I said goodbye to one of my oldest friends, Choey (Jess). She is jetting off for a year to Oz in two days time; I will miss her a huge huge amount as she has only lived a road away since we were 8; we have pretty much grown up together.

I'll always love my Cho

I'll leave you all in peace now and will come back next time in a much, much better mood. 
I promise!

Lots of love


  1. I think you are been incredibly brave. i always have hair loss after a bad flare. my hair is really fine and after my last bad flare when i was hospitalised it came out loads but is fine again now i know another thing to stress about. lovin reading your honest blogs which have me crying and laughing and showing the world what its like living with this cruel challenging illness. bring on the next one!!!!! xxxxxx

    1. Thank you so much, that is so kind! Although the hair loss should be the least of my worries it's horrible huh!
      G xxx

  2. Hope the stoma nurse sorts you out so you and Margaret can make up! And thank you for the q&a blog post, it certainly answered all of my questions :) xx

    1. Ah brilliant, I am so glad! If you have any more questions feel free to comment, Im happy to answer them!

  3. I had the same problem with my bag driving my skin mad wanting to rip it off and scratch the hell out of it. My lovely stoma nurse brought a selection of New bags to try i know have one with an aleo vera backing and its brilliant. There are lots of bags out there hope you get it sorted. Along with all your other problems you sound like your having a real pants time it gets better :-)

    1. Thank you! Im sure I will find a bag I get on with in the end, just a case of trial and error until I do.
      Hope you are well!
      G x