Wednesday 3 July 2013

All in ya head

Hi Guys!

This is my second attempt at this blog post - the last one deleted itself. Not happy about that!
So, here we go again.

If you have read my last post you'll know I have had a tough few days recently. The tramadol has been doing its job, and has allowed me to get a bit of rest, which has been brilliant. I still struggle to get off to sleep but I soon get so exhausted that I drift off and the sleep I actually have feels more restful. It has also slowed the output of Margaret down, meaning I don't need to get up in the night so much. The pain is still there, so I couldn't wait for the nurse to come yesterday.

I had to lie out on the sofa, so she could have a proper look at Margaret. Mum was at work so Dad was there with me for support and to help explain everything. I am rubbish at telling people, mainly medical people, how bad things are and how much pain I am in. I tend to give in to what they say or think and don't stand up for myself enough. This, without a doubt, has meant that over the past year things have at times gotten a lot worse than they needed to be. Now, when I need to have key conversations with nurses, doctors or surgeons, I try to have someone else there with me, as a back up if needs be.
My stoma nurse had a look at Margaret, and felt around her, which had me practically jumping off the sofa. It was then that she told me that there was nothing wrong with her. The wound was starting to heal and there was no reason that she could thing of for my pain. Of course I was relieved that she was healthy and healing okay but also concerned as to why I was still in so much pain.
She gently suggested that sometimes when it has been sore in the past, the pain can be psycho-symatic, basically in my head. I can see how I was always expecting the pain and was very tense a lot of the time with anticipation. But I knew that the pain I was experiencing was definitely there - I didn't know what to say! There was nothing left to see or do, so we put a bag back on Margaret as Dad went out to answer the phone.
We then sat down and had a chat about my diet, it was at this point that we had a brain wave. It turns out that I have been eating a lot of acidic foods. Of course I have been avoiding oranges and lemons but have still been enjoying foods such as tomato and rocket. I have in fact been eating some acidic with every meal. My output it still quite quick meaning it is full of stomach acid, this a long with with acidic foods has been burning my skin. The output has been leaking in to the open wound, which is when I have a big overwhelming stab of pain, it is then sitting there until I change the bag (two days) which is causing me the constant stinging. Ouch!
I am now banned from all raw fruit and veg, including salad, which after 24 hours I am already missing. Once I am all healed up I should be able to eat it all again.
I am so glad that the mystery has been solved and that the reason isn't too serious. It wasn't all in my head!
My bag has also been changed. Until now I have had standard, flat bag but I am now moving to a convex bag. It has a raise dome shape on the sticky bit which helps push Margaret out, meaning the output should avoid seeping through on to my skin.



Apart from the seal, the bag is still the same size, it is just a bit more sticky-outy. This may not be a permanent change but until the wound heals, this is what I will be using.

Thanks to the tramadol I was able to get out with Matt for a bit of a shopping spree. Unfortunately, not the kind of shopping trip I like! Rather than clothes, Matt needed to get a few bits n pieces for work. Although it wasn't overly exciting, I really enjoyed getting out.


A rake thats taller than me! I really am a short arse.

I have also had a few more really lovely messages. I thought that once the novelty of my blog wore off I would stop hearing from people but this hasn't happened! I am constantly amazed by some people. Some people have been absolutely amazing, including people I would never have thought would be. People I haven't spoken to in months or even years have gotten in touch consistently and have been amazing. Others, who I would have expected to be right there haven't been. I think part of the problem is how long I have been poorly for, frankly the novelty wears off. Without feeling sorry for myself, visiting the sick girl does become boring and I know that. It is so true that you find out who cares and who is even thinking about you when you are poorly sick. 



I will leave you with this message in Haribo from Daniel, he gave it to me at about midnight, when I was stuck wide awake. My kind of message!

Lots of love
xxx

1 comment:

  1. Hey,

    I'm Andy, I'm from Thatcham and I have an Ileostomy too. Saw your blog on the Newbury Weekly News website. Just read this entry and I have exactly the same problem, bit of skin around the stoma is red raw and painful at times, though not as painful as your's sounds. it's been bugging me for months, sometimes nothing too bad, sometimes enough to wake me up, but my nurse wasn't so helpful. Seeing a new one next week. I don't think I eat a lot of acidic foods, so unsure as to if that could be the same cause for me.

    How are you finding the pelican bags? I tried them, but I just didn't get on with the bottom flap, I'm using coloplast, which works better for me.

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