Thursday, 26 April 2018

This is a VERY long road I'm travelling

This blog is often used more as a "Dear Diary" than something I actually expect people to read. I like to know I can look back and see what was happening and when...

My health sucks. This Jpouch sucks! I have had nothing but trouble with it since it was created. I had Cuffitis (inflammation, spasms etc) in it before it was even connected up. That should have been a pretty good indication that all would not be well in the long-term...

Medications wise, I'm out of options. My IBD team made me RE-try all of the meds that hadn't worked in the past which I was pretty pissed about in the first place. It felt like a waste of a few months, in which we could actually be trying something to make me better in! You can read more on that here: Hello again square one. I've been expecting you!
Anyway, here we are, meds don't work, pouch has failed, it needs to come out. Emails have been flying back and forth between me and my IBD nurse for the last few weeks, and I am getting nowhere fast! My surgeon is at a different hospital to my consultant and IBD nurse, and I was automatically discharged because I hadn't seen him for a long time. I only found this out a few weeks ago when I tried to book an appointment to see him! So, I asked my IBD nurse to refer me back to him, which she said she would happily do.

Now, for some unknown reason, I am being booked in for a flexi-sigmoidoscopy and the referral will not be done until the results of this are back... Apparently, we need to confirm active pouchitis. Why me saying I still have pouchitis is not enough after 11 years of IBD and having NEVER got it wrong before is completely beyond me!

I'm not AT ALL happy about having to wait a lot longer for the referral for the sake of a result when we already know what that result will say!

I emailed the IBD nurse, which will probably fall on deaf ears... but, we can live in hope can't we! This is what I said:

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I've never reported that my pouchitis is active and been wrong in the past so I'm feeling frustrated that I have to wait for the flexi, then the 3 weeks for the biopsy results before the referral even goes through to Mr Brown, as I'm fully aware (and I'm sure you are), that this pouch needs to come out. I know there are no medications available to help alleviate my pouchitis symptoms, which are continually getting worse, so I'm keen to get the ball rolling sooner rather than later. Waiting for the results of the biopsies just means an added number of weeks to this wait, which already feels like a lifetime because I feel so unwell all of the time.

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I actually feel like I might lose my shit very soon. It's really not OK to prolong my suffering for no real reason. I am 100% fed up with having to fight all of the time for the correct care. A few years ago my own IBD team ignored me and brushed off the pain I was experiencing for TWO WHOLE YEARS, which I kept stating was not actually in my pouch but in my small intestine. It was only when I demanded a second opinion that a long and very tight twist and abscess were identified in my small intestine, which I then needed emergency surgery for. The surgeon could not understand how I was even still standing.

I am thankful for the NHS as a whole, but I would very much like a better team involved with the treatment of my IBD. As it stands right now, I'm actually doing all of the work myself!

2 comments:

  1. Since November, have had an incision that hasn't healed yet, now to date have had 6 infections 6 lots of antibiotics and an appointment to see my surgeon, in July, now by my reckoning that's approximately 8 weeks away, another 5 possible week long courses of antibiotics,surely this many antibiotics can't be good for you, contacted surgeons secretary only to be told they were so overbooked they squeezed me in in July,have mentioned I will accept a cancellation here's hoping, and hopefully you'll also get some sense and relief, good luck x

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    1. Oh bless you, that is terrible! My referral has gone through now thankfully. The IBD nurse begrudgingly complied! I do hope you get a cancellation xx

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