A better day :)

I definitely don't want to leave that last post hanging at the top, but it was how I felt and the full truth of what has been going on.

After completely resting my bowel I managed a better night sleep last night and feel better in myself for finally getting some sleep. Feed has gone back on at 20mls an hour today and it's killing me again but yesterday I needed sleep more than feed and today I need feed more than sleep (just about!) Not that 20mls an hour is going to give me too many calories.

I got the news yesterday afternoon that my tube was in the right place - there's still a slight concern over whether or not it has split inside after it blocked last week. But I will just go with it for now and if it causes any more (more than usual!) problems we will pursue it further. Hopefully it is fine though! If it hasn't split I can only wonder why on earth my bowel has a pH level of 3! Anyway it's not a priority concern right now.

Yesterday afternoon Mel surprised me with a lovely card of messages and a massive shark from the English girls at uni, so that was a very much needed pick me up. I'm really very lucky to have so many people supporting me and keeping my spirits up all the time :) I've had loads of visitors, cards, messages on Facebook, emails and texts and I'm so grateful for all of them. I can't tell you how wonderful it feels to know that so many people take time out of their day to think of me. I can honestly say that what ever crap has been happening I have never felt lonely thanks to all of you :) You are all such great people :)

Struggling as I was, I managed to get a bit of uni work done yesterday and caught up on all my lectures and then today I've done quite a bit of work on my dissertation. Still lots to do - it never ends!

I had a visit from another consultant today who was very knowledgeable in Enteric Neuropathy and really lovely to talk to. He listened to me, explained things for about an hour and put together a plan which - assuming it all goes ahead and none of the others come and sit on it again - has made me feel much better about things. Fingers crossed now that we can get some sort of plan together that improves things. He wants to send me for a full 7 day transit study and put some of my tests together to suggest that certain parts of my bowel may be worse off than other parts which could still have some decent useful function in them. If this is the case and he can pin these parts down in the transit study then this opens up some more positive options for me! However, there is obviously still the chance that my whole gut is affected equally, in which case... I guess we'll just take it from there if that is the case. There's a bit of hope though and that is more than we have had in a very long time.

I'm going to be going home overnight tomorrow ready for my interview at 8.30am on Friday morning! There has been so much more prep work for this one - it's all I've been doing all week! I have to write a short essay on a reading that we have been given, present a short literacy task to year 5 students (9-10 year olds) and then have an interview. Hopefully get the scary stuff out the way first and then chill myself out for the interview - I think that's quite a horrible thing to put interviewees through!

I've got lots of fun stuff coming up over the next few weeks so I'm really hoping that I am well enough and allowed out for them. I'm EXTREMELY excited that I've got tickets to go and see Noel Fielding on 28th November in Preston. Like, I am majorly freaking out about this! I've been a massive fan of Noel Fielding since I was about 12, and every live show that The Boosh, or Noel has done himself I've been too ill to go to. He hasn't done a UK tour in ages so I was so excited when he announced it. I'm not entirely sure our seats are going to be that brilliant but I don't care, as long as I am there it's going to be so great! I am literally crossing everything that I can tick this one off the list!

Then the week after I have Kodaline with Meg, Irwin and Becca at Manchester Apollo as well as The Vaccines in Blackpool with Katie Brown. I'm not really sure how I'm going to wangle these dates off so I will have to see the best way to tackle it at the time but we've had tickets for quite a while.

Thanks again for all your love yesterday - here's a better post for the top of my blog. Hoping things go in the right direction now and that even if I don't get the best results over the coming weeks that we can still have some sort of a plan going on.

Angry Rant

I never intended to do anything like this on my blog, but what the hell, it's my blog and I think I've absolutely lost the plot now anyway.

If you ever get the 'opportunity' to recieve the 'help' from this specialist centre. Don't. Run for the fucking hills and don't look back.

Here I am, two and a half weeks, in more pain from the tests and drugs they've put me on with absolutely no plan but to sit here and keep getting worse. I'm exhausted, I haven't had any sleep in about a week because I've just been in too much pain. I've been working my ass off trying to get all my work done for uni and my interview and I'm not really sure what for because what is the point in trying to enjoy a life like this? I always fought to live my life because I thought it was absolutely worth it to achieve things but I'm really struggling to understand why it's worth it at the moment because I feel like this is the last place to end up - one of the only two specialist centres in the country and they can't help me. I don't have that little bit of hope any more.

The plan for admission was to trial TPN - which I have put off considering for a whole year, since I got sick last year because it's an awful thing to end up on. Eventually I said 'let's try this!' and then I came here and they fannied about. One person says it's the right thing to do, another person says it's the wrong thing to do and the third person says you're screwed if you do and you're screwed if you don't. I don't want to go on TPN. Ever.

So the vague decision was made this morning to probably not do TPN. But with no other fucking plan but to sit here and wait to be seen by someone else who 'has a busy diary'. I'm in agony and I have no pain relief. I feel sick and I can't tolerate my feed. On Friday, there was suspicion that my jej extension had migrated back into my stomach so I was on reduced feeding over the weekend. Yesterday I had an x-ray to check its position and I haven't heard the results but I don't really care any more since I'm not tolerating my feed anyway. I didn't bother to ask at ward round. I don't care and I don't trust anyone here.

I just want to come home, and at the moment I'm contemplating self discharge because they have done nothing for me here but make me hurt and put me in a bad mood.

Sorry this is an awful update but this is how things are at the moment.

Welcome to Salford Royal!

I've been meaning to blog all week but just haven't really got round to it. People do often assume that I get bored when I'm in hospital. I get bored of being here and want a change of scenery but I'm still always busy with uni work, visitors and presently UCAS! I'm rarely bored whilst I'm in hospital actually.

So, I've been here a week today and I thought it's best time I pop up a post before I get out of sync with what has been happening. My last post was quite a negative one, and I'm not all that pleased that it's been sat at the top of my blog for anyone new who might have been reading. I'd like this one to be better with more fun things but sadly no fun or excitement!

Last time I was HUGELY stressed with my PGCE plans which were crumbling around me and I had a right emotional roller coaster of a time with it but I'm pleased to say that I have been accepted onto a PGCE course at Edge Hill pending my degree and I've also applied for Schools Direct at Preston Alliance/University of Cumbria and have been offered an interview in a couple of weeks so fingers crossed that I can get some leave time for that.

I was still really struggling with feeling poorly and so I cancelled all my plans for that coming week - horse riding with the girls and going down south to see Jenny and my Auntie however at last minute I decided to go and see The Wombats with Katie on the Friday night because I have wanted to see them live for AGES. We managed to get our tickets changed to disabled which got us a great view on the balcony out of the crowd and also had plenty of seats but unfortunately this area was also the VIP area and the people who had paid for VIP tickets (and either didn't know it was also disabled or didn't care) were taking up all the seats or stood on them so we struggled a bit when I needed to sit down. Whether for myself or for Becca I've never come across a particularly good arrangement for disabled people at any venues which I think is a really great shame. The facilities are either so far out the way that you can't see anything or in a really unsuitable place.

On Tuesday I had an appointment at Salford Royal intestinal failure clinic which was fairly straight forward. I was weighed, spoke to the dietician, had my bloods done and saw the consultant all very quickly and without anyone having too much to say and then came home.

I had my interview at Edge Hill on the following Wednesday which all went very well with the exception of the science skills test which was an absolute dive bomb. I need to seriously knuckle down and brush up on my science!

On Thursday I had a phone call from the intestinal failure unit saying that they wanted to bring me in the next day and so as I was about to head out to an appointment in Manchester, I had an absolute mad rush trying to do my washing, start and finish my UCAS application, tie up bits of uni work, email tutors, ring work to let them know and do as much of my to do list as possible.

So that is where I have been for the last week. People keep asking me how I'm doing, what I'm doing and I'm not really entirely sure what to say or what the plan is yet. I've been down and had a small bowel bacterial overgrowth test which was negative and also a tubogram which showed my tube was in a reasonable position and I'm waiting for a barium. I'm certainly on a downward spiral anyway at the moment so my weight has dropped further since I've been in. I'd managed to get up to 56kg between my last appointment at clinic in July and the appointment last week, but by the time I was weighed in clinic last week I was back down to 53kg again (which I was in July) and I've since dropped to 52kg in the last week. The last two days I've felt really poorly with bad pain, nausea and as a result a complete lack of sleep. However I had a better night last night and feel a bit better today so I've managed to get a bit of uni work done.

I've also been seen by the pain team who were nice. There are always two ways professionals approach my pain. They either say 'don't take pain killers because they will make your bowel worse' or they say 'you can't be in that much pain if you won't take your pain killers' and try and bombard me with heavy opiates. It's quite frustrating. There's also another cluster of people who want to try things like anti-epileptic drugs or anti-depressants for their supposed 'pain killing' properties. I've done my time with these drugs and they don't help or agree with me. They also said that it might be that my bowel doesn't absorb them anyway but that it doesn't necessarily stop them from slowing my bowel down. So for the time being, it's paracetamol only still. It's not great as it doesn't do anything for my pain but I'd rather be in pain that be making my bowel worse, when it's my bowel that's causing the pain. They said they'd still like to follow me in clinic with my pain so I will be doing that when I come out.

I've started a new tablet for absorption as I'm slightly low in vit d and calcium but other than that there really is not a huge amount that has happened so I don't have too many answers to hows it going and what's going on. The only thing on the cards now is my barium which we will await! Feel a bit frustrated with how slow things are moving because obviously I want to get back to my life but unfortunately I just have to be patient (literally!).

Thanks to all the usual lovelies for all your support - the cards you send, the visits or the lovely comments and messages on Facebook. I really appreciate everyone who takes the time out of their day to think of me like that and there are always so many of you!