Remember that letter from the IBD nurse which irritated me?

Well, I wrote this mail to her this evening, but haven't sent it yet. I can't decide if it's even worth bothering, or if my reply is a steaming pile of dog's do. I made the humungous mistake of showing it to my mum, who was the worst for wear for drink. Absolute, complete and utter waste of time. Anyway, here's the wretched thing.

whatever said...

Hi, [name of nurse].

Got your letter a couple of days ago. You mentioned Cosmofer. I did have that, but it was at the hospital prior to Stoke Mandeville, and I had an anaphylactic reaction: passed out and woke up on the floor :-/

At Stoke, I was scared of the same thing happening again, so they gave me something called Ferinject at a much, much slower rate than normal. It was split over two doses instead of being given as a single dose. At any rate, it did the trick - no allergic reaction and my haemoglobin went right back up.

So, I'd rather not ever have a Cosmofer transfusion again, unless there is absolutely no other alternative, thanks...

One more thing. I appreciate this will probably sound a bit nit-picking, so apologies in advance if it does. You said that the combination of Methotrexate and Infliximab appeared to be treating my inflammation because my CRP had gone down from 178 to 46. But I think it was actually Prednisolone which brought down the CRP. In fact, my concern is that only steroids seem to be capable of reducing inflammation.

On top of that, my symptoms have not improved since I started Methotrexate. I'm still having watery diarrhoea, pain, low-grade fevers, loud stomach noises. I also feel chronically unwell and tired. `

Personally, I feel the medical therapy option has been throughly exhausted and it is clear it is not working. I'm due to see the consultant in October anyway, so I'll wait until then, but in all honesty I'm thinking surgery at this rate.

Thanks for reading...

Shortened it a bit and removed consultant's and nurse's name for fairly obvious reasons. Feel reasonably confident the nurse won't even respond, so is it even worth my sending this? I mean it about the Cosmofer though.

Thanks, Datawraith, that does help actually...

I couldn't agree more with your third sentence, the one which begins with 'ultimately'. I'm not trying to be a "difficult" patient (my mum's word... -_-), I really don't want to get stroppy with anyone or create a scene. But if having a few opinions and thoughts of your own is equivalent to being a difficult patient, I really don't know what to say to my mum anymore. How can I keep quiet when I do feel like I know more about my own Crohn's than the nurse or doctor? I wouldn't be surprised if I knew more about Crohn's in general than my IBD nurse, simply because I have a personal interest in it that she doesn't.

Anyway, for better or worse, I'll send the email now so she can get it first thing Monday morning. Lucky her <_<.

Too late, I've already sent it... :-/

I would have waited longer, but I'm pretty much on the verge of going to bed - in fact after this post I will go.

You do make some very fair points. I deliberately didn't make my letter too business-like because my gut feeling is that wouldn't go down too well. I don't really know where I stand with the nurse, but my feeling is I'm not one of her most beloved patients ever. So I was trying to avoid the impression of making a complaint.

I suppose my goal was just letting her know. The Cosmofer is actually crucial, the rest of it is just making my feelings known. I don't expect her to respond, I don't much care either, but at least she can't pretend the disease is under control any more. That was what really irked me the most - the feeling of being fobbed by a nurse who doesn't even know the basic facts about my case. She shouldn't speak about stuff she doesn't appear to know about, eg taking credit for Methotrexate/Infliximab working, when the evidence isn't there.

But no, I don't want to be prescribed any more Pred (been on it too many times already), see the doctor any earlier, or even to come off the meds (eventually I will, but for now.... meh, might as well stay on them). I've got an upcoming appointment with the surgeon already, also in October. Anyway, I'm a bit worried now that the nurse will think I'm asking for something that I'm not! Oh well, it's not likely she would do anything about it anyway...

Thanks anyway, gumby! :p

Good for you, NCOT. You've written a calm, rational letter that presents your point of view without nastiness or whining. If she takes offense at it (or if she ignores it), she's a very petty person--and not a good nurse, either. It's always important to be your own best advocate. Your doctor and nurse should appreciate your opinions and your involvement in your own health care. I hope they rise to the occasion.

NCOT,

I understand your frustraition with the Nurse, however, why are you letting a nurse dictate how you are treated for your IBD.  Why aren't you seeing a GI Doctor.  Doctors are the one's trained for many years in your disease.  They should be making the decisions...the nurse should be doing what the GI says.  I would even be ok if a PA was treating you..but a nurse.  To me that is a major problem.

You are saying that you want surgery because the nurse isn't helping you.  That isn't their job.  Their job is not to treat you..that is the job of a doctor.  I would say before you make anymore decisions...see a GI.  Talk to him/her.  Let them set a course of action for you.

Mind you..I have great respect for nurses and they are great at helping out when needed.  But I would never let a nurse dictate my treatment.  I actually changed doctors once when all I saw was the PA.  I go to a GI to see him..not his help.

We have a very tricky disease that many don't know how to treat.  This sounds like the case with you right now.  Don't leave your health in the hands of the untrained.  Seek out a GI that will help you.

Feel better.

Thanks folks :p

Haven't heard anything back, but I only remembered this morning it's a Bank Holiday, I think... *sigh*. Just means nobody will be working until tomorrow.

@Java - I literally don't have the will to explain.

@petitarte - Long enough to know it's not going to make the blindest bit of diffference.

Completely and utterly depressed today, so I'm gonna go off before I end up saying something I regret to somebody. Thanks a lot, though, to everyone who tried to help.

I returned... :-/

I'm feeling a bit calmer now, so I'll quickly explain to Jay that I am under the care of a GI, hence why I mentioned seeing the consultant in my letter. We don't tend to call gastroenterologists GIs in the UK, although occasionally I do on here because it's quick and easy and everyone knows what I mean. But most of the time I use consultant, because he is a consultant and it's the word we Brits tend to use for our consultant doctors.

Another thing: it's virtually impossible to speak to a consultant outside of an appointment setting, so you have to go through an intermediary like an IBD nurse, secretary etc.

Probably not quite relevant, this, but while I have a lot of respect for most nurses, IBD nurses I'm not so sure about. I've dealt with about 4 in my time and not one of them I would rave about, to be honest. Think my main issue with them was that they didn't seem to know enough - and at my previous hospitals, they were usually the ones I would end up seeing at appointments. If I asked a question, I never felt they could answer it decently - not that I asked very many questions, but the few I did ask, they didn't seem able to deal with. Then at Stoke, they seemed to keep changing doctors every 3 months, so the consistency of care was non-existent. By the time I arrived at my current hospital, I almost begged to see the same doctor (not a nurse) every time! I said I would wait longer for appointments if I had to. To be fair to them, they have by and large honoured that.

Er, well anyway... moving on... >_>

Cheers again, everybody :p