Jiving on Regardless

Last night my UC decided to give me a potent reminder of how bad it can get but it didn’t start off that way.

Yesterday I woke up feeling exhausted.  I had that feeling when your body feels as though it has no substance despite a good nights sleep.  I tell people it feels like I have been unplugged, that is the only way I can describe it.  Despite this feeling I carried on, as you do, and had a fairly busy morning.  We were planning on spending the day with my Mum who lives about 40 minutes away but she was ill so we nipped up to collect some things from my brothers and were home at 2.30pm.

I had already arranged to ring E, the lady my Stoma Nurse recommended I speak to.  As I was home I texted her to see if she could meet for coffee instead and she could.  I proceded to spend two hours with her.

What a lovely, lovely, lady.  She spent two hours going through everything in incredible detail with great thought and compassion. It was far more helpful to speak to her than I could have imagined.  She had UC for two years and then got very ill and ended up having an emergency operation – at the age of 20! As you can imagine this was horrendously daunting and scary.  A lot of what she described as being difficult and awful I hope I won’t have to deal with purely because I have had time to prepare and talk to people.  She has definitely prepared me for some details I hopefully won’t find as shocking now.  She had an horrendous time with post operative infections and ended up spending three months in hospital.  This is just one of those things you can’t predict and yet is quite common, I just have to hope it doesn’t happen to me.

Despite the difficulties she encountered with the first operation she eventually went ahead and had the J Pouch surgery with no complications and is now very happily ‘normal’ and a huge advocate of the operations.

I came away feeling a little overwhelmed and scared but also relieved to have been able to find out the ‘details’ beforehand and extremely pleased to have found someone I predict will become a very valuable source of help and support.

That evening I was feeling totally exhausted but relayed the conversation to my husband and my thoughts and feelings on the subject.  He was fantastic and reassuring.  My main worry was that I don’t feel ill enough right this minute to warrant such a huge, life changing ordeal – correction, I DIDN’T feel ill enough! My husband proceded to point out how ill I actually was and to once again remind me of my lack of perspective on these things. I then had to suddenly rush to the toilet and spent 45 minutes in complete agony.  It was so bad that I seriously considered getting myself to A&E as I know that once it turns this corner there is no going back.

After a while I managed to ply myself from the toilet and fall asleep and I actually slept through the night. After thinking about there was no way I was taking myself to hospital on a bank holiday weekend.  I have been down that path before and it is just a nightmare as the consultants don’t come in until the next working day.  I shall just tolerate this until I can speak to my nurses on Tuesday.

This morning I woke up and the process started again and I have had a very rough morning running to and from the toilet and in much more pain.  I guess it kind of thought it ought to remind me that it really is here – bastard!

I am taking a sick day today, which means, for the first time in a long time, I am yet to get dressed (at midday), I am spending the day in bed and my husband has taken the kids out to give me some peace.  I am really hoping that resting will allow it to settle down. I really wanted to keep going for a few more weeks until N and I had been able to see the Stoma Nurse, the Consultant and the Surgeon together and had also been able to plan with our parents our childcare and so forth. I am now just praying that this blip isn’t a big blip and doesn’t see me taken in as an emergency – I have a feeling it might.

I wouldn’t be taken in as an emergency in terms of ‘your bowel is going to perforate, you need to be operated on now or die’ which obviously can happen to some.  It will just be because there is nothing they can give me to settle it and thus settle the pain.  It will be a case of being in agony until the bowel is removed.  In some ways, whether this is a minor blip or not it has served to remind me just how painful UC is and how I can never face a severe flare up again.  It is definitely time for me to have the op.

So, on Tuesday, I shall call the Stoma Nurse and my Gastro Nurse and start the ball rolling.  It is possible that just by speaking to my Gastro Nurse, she can speak to my consultant and get the referral ball rolling to the surgeon. Either that or she will tell me to come in and they will admit me.  My consultant has always said that if I came in out of the blue I could have the operation within 48 hours – they don’t mess around with UC which is one Godsend.

Fingers crossed I will be granted a temporary reprieve from my poorly intestine.

As time goes on I shall relay all of the helpful hints and tips E gave me yesterday but to relay a two hour conversation will take far too long.  Needless to say, I am sure I shall be repeating many of them.

The damn toilet is calling me so time to go 😦


et cetera