Jiving on Regardless











{November 11, 2008}   Next – take-down!

Yesterday I went for my Gastro Enema.  I was a bit anxious about it as since my op whenever anything or anyone has gone near my pouch it has been very painful.  Once again I felt very anxious going into the hospital and have decided that I really do hate the place and the memories it holds for me!

Despite my anxiety the procedure was easy and painless and the radiographers were really kind and considerate.  I had to change into a gown and then they placed me on a bed under the x-ray machine, which was a massive machine, it was quite a piece of kit. The Radiographer then inserted a soft tube into my pouch and injected 50mls of barium fluid.  It was quite amazing watching the barium go into my pouch and intestine on the screen.  The pouch isn’t as big as I imagined, I guess logically it is only going to be double the size of a piece of small intestine as it is a loop of intestine connected, but it is amazing to see how this little thing can make such a huge difference.  Whilst on the bed they made me roll this way and that way to ensure the barium goes around the entire pouch to see if it leaks.  There was one area which could potentially be a tiny leak but they didn’t think so and wanted to check with the consultant to see if he could shed light on what was causing this minor issue.  All in all they felt confident that my pouch is fully healed and sealed and I can have my take-down whenever I want.  I shall now just wait for Mr B to contact me and confirm this result.

So, another step taken and another step over – we’re getting there!!

Aside from this my stoma has been acting up on me the last few days.  For some reason my bag has come unstuck and hence leaked twice in the last few days.  Last night, for the first time, it happened whilst I was asleep.  Fortunately I woke up just in time and it had only managed to leak around my bag and under my top – no horrible mess to contend with in bed (my bed is appropriately covered in waterproof sheets and covers etc so it isn’t ruined in such an event).  It was however, an enormous chore having to change my bag at 1am!

I think the problem is itching.  I generally get quite dry skin, especially in the winter months due to central heating, cold weather and so forth.  The skin around my stoma has been very itchy and although only a little red and sore in places it otherwise looks good.  I think a combination of using a barrier cream which can effect the stickiness of the bags glue if not wiped off properly, and me scratching (even in my sleep) around the edge of the bag, is contributing to this problem.  I have now re-measured my bags in order to get them laser cut and check that my miss-cutting isn’t exacerbating the problem, and trying to be very careful with the new barrier cream.  I am also showering without a bag (I have to do this as soon as I wake up before I eat of drink anything so that my stoma isn’t messy!) which is helping as it gives the skin time to breath and air dry – it is also so liberating and much easier than faffing around a sink.  It took me a while to buck up the courage to do it but the other day I had a major leakage which gave me no option but to jump in the shower without my bag and thus plunged me out of my comfort zone and turned out to be no big deal – I recommend it!

Right, time for me to get my boys to school. For some reason everyone woke at 6am this morning so it has already been a long day!

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{November 10, 2008}   Getting on with it

I seem to have got into a cycle of writing three weekly updates, i’m just so busy that despite always intending on writing I never seem to manage it.

I have just read what I last wrote and fortunately things have improved massively since then.  I did see my consultant and he let me off with any examination as he said it wasn’t necessary due to me having my scan soon.  We talked about next steps etc and basically the plan is still that I have my scan, which is later today, and then, providing that is all fine, I shall have my take-down booked.  I am definitely not going to have it until January which is good as I can breathe a sigh of relief for a while – I am still not looking forward to it.

Going back to the hospital to see my consultant was very stressful. I hadn’t considered that it might make me anxious but I practically had a panic attack just walking through the door.  This is so odd as I have never been worried about going to hospital/procedures etc, but clearly I am slightly traumatised by my recent experiences.  I am trying very hard to work through it all so that I can go in for take-down with a positive attitude.  My consultant gave me a long lecture on how important being positive is and that being calm and happy is essential for healing bowels!!  I have never known a medical person be so concerned with my mental health, it was quite refreshing really.

Since my appointment things have been much improved.  I have very few painful contractions in my pouch now and I am not having to empty it as much.  I am yet to have another period and am interested to see if it sets me back a bit again, but at least if it does I know why and only have to put up with it once a month.  The last week I have felt fantastic.  I have started to exercise again and am really excited at the thought of getting fit again.  I haven’t started dancing properly but I aim to get to a class this week and see how I fare.  When I have weeks like this I feel a million times better than I ever did with UC.  It is really amazing to have energy and to feel bright and positive about the future. I am looking forward to the time when I can think to myself  ” I have felt great for six months/one year now” – it will be amazing.

Prior to surgery one of my biggest and most pressing worries about the surgery was having the ileostomy bag and the body image issues which would then arise and the impact this would have on me.  Ironically this has been the least worrying and difficult aspect of the whole thing.  I  feel more comfortable in my own skin now than I have ever felt in my life.  I feel sexier than I have ever felt.  It is bizarre but I can only put it down to generally feeling well and energetic and just not letting the bag interfere with that.

There are times when having the bag puts me out of my comfort zone.  I recently swam for the first time and this was a mental hurdle. It was made easy by the fact that I ordered a lovely swimming costume from the White Rose Collection which completely hides my bag and looks great – you would never ever know I had a bag underneath.  Yesterday I went for a day at a lush gym and solarium and spent hours in Jacuzzis/steam rooms and saunas.  It was great but  by the end of it all my bag was about to leak and had almost peeled off only being held on around the immediate edge of the stoma.  Again, it was out of my comfort zone to have to change my bag in an ordinary toilet cubicle with no sink, but fortunately I had wipes etc in my I-Bag and despite feeling a little anxious I got on with it and tackled the job.  In some ways it is nice to have these challenges as I am constantly feeling like I am achieving something, which ultimately makes me feel great.

All in all, right now, I am getting on brilliantly and just hope it continues.



et cetera