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Devastated

I didn't have the best nights sleep last night. The first cannula they put in my wrist came out after a few hours and I ended up covered in blood and saline. I'm not easy to cannulate and after a few attempts the Charge Nurse managed to get one in my arm but it was in the crease of my elbow so I had to keep my arm laid out flat and still- if I bent my elbow then the drip would stop dripping. By 11pm this had tissued though and I ended up with a large, painful lump where the fluids were going into my arm tissue rather than the vein so that cannula had to come out.

The night nurse came to try and get another cannula in about half past midnight and lets just say cannulating isn't her forte. She eventually managed to get one in my hand after a number of attempts and I was back on the drip. 

At 3am the nurse came to give me some antibiotics into my Hickman line. Because the antibiotics need mixing and it has to be done sterile this isn't a quick job and took about 20 minutes. Then they came to do observations (blood pressure, pulse and temperature) at 6am so I didn't get more than 2 hours unbroken sleep at any one time last night. 

I must have dozed off this morning because the next thing I know I am waking up by having my arm stroked gently and can hear someone saying my name. As I come round I realise it's Dr 7 sat by my bedside along with Dr 20, the junior doctor and the dietician. 

Dr 7 asks me to describe what's been going on and I tell him about the problems I've been having with eating, the pains, the throbbing in the Hickman line and infection symptoms. 

Normally if someone has two or more line infections then they take out the line. But given that I'm on my 4th line in 6 months they're reluctant to just whip it out. They know how difficult it was getting this last line in and that I'm running out of good veins to have a line put in. 

Instead they talked about something called 'Terralock' which you put into the line after you've finished a feed. It stays in the line and is supposed to stop bugs from growing in the line and reduces the risk of infection. Sounds good to me. They also says they might keep me on IV antibiotics for 2 weeks instead of 1 to make sure the infection really goes this time. 

Dr 7 also looked back at the CT scan I had in January and the endoscopy results (which all came back as normal). He said he doesn't know why I'm having such difficulty tolerating anything other than egg, rice and potato and that he's going to ask Surgeon A's team (the surgical doctors) to get involved again as clearly something isn't right. 

He also said that maybe my body just isn't coping with having a pouch and that maybe I would be better off going back to a Stoma. 

What?!

WHAT?!

The thought of having gone through all of this only to end up with a Stoma again is devastating. My heart just sank. I couldn't even respond. The words just didn't come out. I sat there in stunned silence. 

I think Dr 7 sensed how upset I was and the ward round promptly came to an end. 

I have often said that I don't really care how or where my poo comes out- the quality of my life is more important and being at home, well, with Hubby and the kids is my ultimate goal. 

But over the last 6 weeks I've experienced a freedom that wasn't possible with a Stoma. I've been able to jump into the shower and not have to worry about changing my bag afterwards. I've been able to go out without having to take spare underwear, clothes and all the Stoma parafinalia that was required to deal with a leak. I've been looking forward to getting rid of the Hickman line and going swimming. I've arranged to go bikini shopping with friends now that my abdomen has been liberated and is free of the Stoma bag. 

I don't know if I want to go back to all of that. But I also know I can't exist on eggs, rice and potatoes for the rest of my life. I also can't face the thought of having more surgery. I just don't think my body can take much more. I really hoped that 2014 would be the end of this journey and the year that I got my life back. It would appear that I was being far, far too hopeful and that actually there's going to be plenty of blog fodder in the coming months. 

NB x




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