Intestinal failure clinic.

Yesterday I had my second appointment in the Salford Royal Intestinal Failure Clinic. It all runs very smoothly there with very little waiting around. My appointment was at 2.10pm but I was about 30 minutes early so I saw the dietician pretty much straight away and I was all done with everyone by 2.45pm. In the clinic you have to see the dietician, the consultant and nurse for bloods and it all seems to work really well and cohesively.

The dietician still seemed a bit unhappy with nothing really positive to say. She said from her perspective she would be pushing for TPN now and that I should consider it further. They always throw it around but I'm never really sure what they really want to do. They always ask me 'What are your thoughts?' and I just don't really know. This time I said that I felt like I hadn't moved forwards for a long time and that I am increasingly struggling and was certainly more open to it this time compared to previously being so cautious and wary of it. She was concerned that I'd needed another admission and that this wasn't very good for my quality of life.

Then I went to have a pile of bloods taken (I mean.. a PILE!) and then I went in to see the consultant on clinic who was a different consultant to the one I saw last time. She was very nice and quite easy to talk to. She was up front with me that they had literally no notes or results other than one piece of paper with a few scribbles on (last time they said to come back once they'd done a bit more 'research' on me which... had obviously not gone well).

Anyway, she said that whilst that I was 'managing' I no longer had any reserves. I can't remember the exact wording of what she said but that with my gut clearly functioning so poorly, there was a feeling that it wouldn't go on like this much longer and would stop? give up? not work? not tolerate anything at all? Something to that implication. She felt that it would be in my best interest all round to start on TPN to get some proper nutrition.

I don't really know how it made me feel. She gave me a very serious talk about the seriousness and risks of going on TPN which was a bit scary and negative and then asked me if I had any questions.

I mentioned that the previous consultant threw up a few ideas such as surgery and a different type of feeding tube, and trying some different feeds (again) and what her thoughts were on that and I just got the impression that 'Do you have any questions?' was actually rhetorical and that the answer she was looking for was 'No thanks that's everything'. She just said that she didn't really know and made some comment about the more of my bowel that I have that doesn't work very well the more poorly its going to make me. I'm not entirely sure what that means but... TPN it is!

I've gone on a waiting list which she said 'may take a few weeks' and in the meantime to go back to Wythenshawe if I get poorly again. The word on the street is that the Salford Intestinal Failure Unit can take a long time for a free bed so I'm not packing any bags just yet and expecting it may be longer than 'a few weeks' before I get in there. She said once they have a bed ready then I will go in and have it for 4 weeks through a PICC line and if we are all happy with how things are going then I will go ahead and have central line before learning how to administer TPN myself at home.

For those of you who are wondering what TPN is, (and there may be a few!) I will do another update on what TPN is shortly as it's now quite late. I'm going on holiday on Friday and I anticipate that I will be too busy to update tomorrow so I will just try and explain what it is in a few words. TPN stands for total parenteral nutrition. Parenteral means going into the bloodstream. This form of nutrition is completely artificial, as opposed to enteral feeds (the ones that currently go through my tube) which are technically still a form of food - a bit like baby formula! The bag of TPN are made up 'bespoke' to fit individual needs and regular bloods are taken to ensure that there is not too much or too little of anything in the bags and that the nutrients aren't causing any imbalances. Unlike the gut, your bloodstream doesn't 'filter out' what it doesn't need. Long term TPN will go through a surgically placed catheter which will sit inside one of the central veins in the chest or upper arm. It does a similar job to a cannula but it will last longer and won't irritate the veins because the central veins are much bigger.

I'm really feeling quite shoddy at the moment so I'm quite looking forward to my holiday to Scotland on Friday so I can get plenty of rest. I thought I'd share with you a picture of tonight's blenderised dinner. Can you tell what it is?

Looks vile but it didn't taste that bad, as confirmed by Mum and Nigel! It's blenderised roast chicken dinner. Mum decided to add spinach in which I'm not a fan of and it's given it that lovely green colour.

The next post I do will be when I get back from Bonnie Scotland. Have a good week, all!

The first week of 23

Second post in and I'm already being all soft and putting out a thank you post. I just want to say thank you so much to all my friends and family who made my birthday really special whether it was seeing you in person, sending me a message or a card or a present. You once again remind me how blessed I am :)

I did nothing of too much excitement on my birthday. I've been feeling really rough with a raging cold, sore throat and mouthful of ulcers all week so I really wasn't feeling it on my birthday. Fortunately I am on the right side of it now! I had work on my birthday and went out for a Costa date with Deborah at lunch time which a nice treat and we also sat in because... YO23O.

Sam came round in the evening when I got back home from work with a sack full of presents from the lovely Shaws who spoiled me again :) Sam got me a snorkelling with Sharks experience* and he also got me a crazy cat lady figurine... erm, complete with cats. Obviously.

*Subject to bartering with the venue - he actually got me a feed the sharks experience because the man at the Sealife centre said I couldn't go in with my PEG but we're optimistically hoping to change his mind because it's a fully healed and very healthy stoma and no different to a pierced ear in my opinion!

This weekend we had my annual birthday barbecue with my fammos and friends. Sam got Becca slaughtered, as standard and Katie and Tom brought an abundance of games which we played until nearly midnight. Sam, for once, didn't win everything.

Here we are, all on one picture thanks to the selfie stick:

On Sunday after a sweet lie in we headed off to Salford to meet the Rosie Heaton. We decided we had loads of time (the satnav confirmed this) and went to get Sam a pair of trainers for our charity run that we are doing in a few weeks time for PORT. Click here for shameless sponsor plug for an awesome charity . Anyway, Sam doesn't own a pair of trainers and it was such effort getting him to buy a pair.

When we reached Manchester the traffic did something absolutely not shocking and held us up for at least half an hour leaving Rosie sat smiling in the pub by herself. Sorry girl. We did eventually have a wonderfully giddy afternoon setting the world to rights and eating sandwiches. Sam also tried to get Rosie drunk, obviously. It was all going so well until I trapped Sam's face in the window. I have to child lock Samuel into the car because he winds the windows down and shouts out of them. Often when we are stuck at traffic lights. When I can't drive off. Only electric windows like to turn off momentarily when both of us go into panic mode and try and wind them down to release trapped faces. The lengths some people go to for a cheap face lift.

Here we are in a collage before Sam's face met window...

Back to work today and I can't really tell you anything exciting that happened; I folded quite a lot of leaflets and didn't leave until 7pm.

I'm standing in the main entrance of the hospital tomorrow morning trying to flog an event that we're holding in September so, if you're in Blackpool just come and make eye contact with me and take some leaflets that I carefully folded today.

I have an appointment at Salford Intestinal Failure clinic in the afternoon though so I'll be leaving at noon. I'm going to try and update on that before I go on holiday on Friday if there is anything at all to update on. We'll see!

'First post'

I've decided I'm going to try and stir up the old blogging juices again. My Life with Stripes blog was so well received and, in more ways than one, blogging is a very healthy thing for me to do. A lot of people encouraged me to carry on blogging after awareness month last year, but I wasn't really sure which direction to take my blog because I wasn't sure if people would be interested in reading about anything other than Ehlers Danlos Syndrome and I didn't really want to create a blog that was purely on illness.

I'm not quite sure how this is going to turn out and I'm still not sure which direction it's going to take. I'm planning on recording a mixture of the knitty-gritty issues of a serious illness, the mundane every day life of an English student - NHS worker and all that is great about my life because what a wonderful thing that is to record.

I'm not going to spend the post introducing myself - I think most people reading this will know who I am, and if not then you will just have to keep reading!

Following my Life with Stripes blog last May, I decided to try again this year but I struggled. I struggled to put into words all that had happened in the last year. So much had changed and the post that I tried to write was a complete mash-up of my effort to interpret it all. It was so disorganised and I didn't really feel like anyone was going to get any pleasure out of reading it. I enjoyed writing it the first year - even the tougher parts provided some therapy and release on things I hadn't ever spoken about. I felt like it might have been easy to fill up a month with everything that had gone on - so much awareness from my experience of the year but it was just impossible to spew out. So here I am, starting from the right now with a brand new blog.

I wasn't too sure on a name for this blog, so I decided to borrow from an existing and quite wonderful creative mind - Caitlin Moran - inspired by her two latest books that I have just consumed.

So, without going through how I got here, where am I now?

In May, I finished my second year of my English Language Degree at University, which means I only have one year left. No sooner had I finished my degree (I had a nice week off in between) and I was back in the Cancer Service office at Blackpool Victoria Hospital doing a job that I love for another summer. Three weeks ago I had my dissertation accepted for third year, and found out that I'd got 68% overall for second year - this I was rather pleased with.

Two weeks ago I had my latest admission to Manchester due to my bowel, after two days trying to stabalise things on the day unit in Blackpool, to no avail. My admission lasted 9 days this time and I returned to work 9 days ago from today!

3 days after discharge, Sam graduated with a First Class Honours Degree in History. As you can imagine, I was panicking that I wasn't going to be discharged in time which lead to an impromptu trip to the Trafford Centre during my admission to find a dress, shoes, jacket, make-up to bring to the hospital in case I had to go from there. Luckily, they let me home and I could not have been more grateful. We had a very special day at the cathedral and I could not have been more proud of my wonderful boyfriend.

Equally as proud was I to see my wonderful and longest reigning friend, Laura graduate with a First Class Honours Degree in Pyschology and Criminology in the Cathedral at the same time as Sam. Someone was definitely watching over me that day to allow me to see the two people who have been there for me most achieve something so wonderful.

On Wednesday Sam and I were invited to the Chancellor's Dinner at the Cathedral as he had been chosen as the outstanding student for his faculty. We both got dressed up in our fancies and had a very posh evening.

Also, I turned 23 yesterday.

I think this sits quite nicely at where I'm at for now. I will see how this blog goes and hopefully, if it goes well, I will continue. Wish me good blogging juices! Now I just need to think of a name for my first post, that isn't 'first post'. I've got nothing.