NCOT - babysteps to preparing for gp's appointment.

Erm, I'm not taking anything... >.>

Was on 6MP until a few weeks ago, but stopped that because it wasn't doing anything for my symptoms whatsoever (been on it twice for 6 months each time). I just refuse to go back on 6MP again.

For the record, tried azathioprine twice too. Tried various 5-ASAs, but had severe reactions to all. (Though that was several years ago by now.)

Not tried biologics yet. Bit of a complicated story there, as the hospital have messed me around over Remicade. Apparently they won't use it for more than 3 doses anyway; if that's true I refuse go on Remicade as well.

That's my Crohn's drug history in a nutshell :/ Left out Pred and Entocort, but they only do anything at the highest dose.

Hey, NCOT, look what I stumbled across:

[http://www.stmarkshospital.org.uk/uploads/docs/patientinformationleaflets/patients%20leaflets%202009/Emotional%20and%20psychological%20resources.pdf]http://www.stmarkshospital.org.uk/uploads/docs/patientinformationleaflets/patients%20leaflets%202009/Emotional%20and%20psychological%20resources.pdf

Does this sound like something you'd be interested in? If so, perhaps you could print this out and take it with you to your gp's appointment, as it has the address to which he can send referrals.

My 2c is that this could really help you - it sounds to me as if you want & need long-term counselling or psychotherapy, not the one off appointments you've been getting so far through the NHS.

(Just so you know, I'm not doing research for you so I can boss your life - I'm doing some research for volunteer work and just found the link by accident).

Ivy.

Right now my single biggest problem is eating, for sure :-/ ... But a few years ago it would have been sleep, as I went through a period of dreadful insomnia. I don't sleep as much as I would like, but I get by: I'm no longer severely sleep deprived, except occasionally.

Ivy - No matter how hard I try, I cannot access that link :-/ I think it's the website itself which is down, however. I'll have to try again later, but for now all I'm getting is a MySQL error every time I try to go there.

I'm sorry, I can't think with my mum hovering around, asking me am I ready? It's later than I realised. Eating is #1 and lack of independence is probably #2, but I'd have to think about it some more... >_<.

Be back a bit later... :-/

You know, I think you've made a really excellent start here.

My brain's not awake, NCOT, but I'm aware of the time difference so want to at least post something before you go to bed.

My suggestion would be to add your weight to #1, and your BMI too. I would stress (maybe even in bold type) that this is underweight, given your height.
You might also find it helpful to attach a typical day's menu, just so he can see what you're eating. Yes, I know this is over-preparing, but it's like the proverbial
ice-berg: you may not have to present the information, but it will help to focus your mind in a clinical way that he can actually respond to.
I also think it would be good if you could mention the possible mood link with eating, and say that others have thought that this could be because of food sensitivities?
Again, this could give him the cue to refer you to a professional.
Also, I think it would help if you could clarify the effects this is having on your life, just for extra oomph.
If Navy comes online, she might be able to help you with proper attention-grabbing clinical wording .
Oh, and you didn't mention the anxiety this causes, either, or the possible connection between food & depression

#3 - I'd get rid of the tentative diagnosis, as this can aggravate some doctors. But I think this is important, and worth mentioning.

#4 - Sleep, I think, is worth more attention than you've given it here, mainly because this is something that a gp really might be able to help you with.
I'd consider filling in some of the sleep diary I sent you, just so he can see what your sleep patterns are.
Also, it might be helpful to point out that food is affecting your sleep, too.

Might it also be worth pointing out that you don't feel you're getting adequate help from your current hospital, and that you are reconsidering your attachment with this
hospital (and with hospitals in general)? Maybe you could ask for suggestions of people that HE thinks might be able to help improve your symptoms, mood and quality of life,
and for referrals to those people.

You're doing incredibly well!!! Remember, the point is to present the problems in a format he can understand and respond to, because sometimes when we're
feeling low all we can do is present as an incoherent block of misery, and that (I suspect) can leave a doctor feeling helpless and as if he doesn't even know where
to start in helping us.


btw, next baby step is just to collect the raw facts:

* how many bms you have a day; how many of those are liquid
* the severity of your pain each day (try rating this from 0-3, with 3 being the most severe)
* how you feel overall, gut wise (0 is well; 4 is terrible)
* can you give your mood a score out of ten for each day?

Ivy.

Got a good 2-3 hours before I go to bed just yet ;p

I can certainly add my weight and BMI. My mum is trying to get me to eat more, which I managed today: light lunch of 2 scrambled eggs + slice of toast, a tiny portion of dhansak curry (not at all hot) with a hard boiled egg, and finally a bowl of cereal. (I really dunno if I should eat cereal or not; it's processed but comes fortified with vitamins and minerals..) Oh yeah, and a few small prawns for protein. However, I can go back to my even more severe diet for a few more days prior to seeing the doctor! I'm usually not calculating like that, but it'd be annoying to start eating more, bloat out on the day, or whatever, and gain a few pounds and have my doctor cheerily tell me my weight is fine.

I've been so crabby lately that I'm less convinced of the link between food sensitivities and mood swings, but then again, gnawing hunger probably does that to a person. I've at least managed to slay most of my hunger today - slaying my desire for anything which basically has an ingredients list is another issue, however.

Re #3 - I won't mention the tentative diagnosis. I do have a bit of a bad tendency for doing that (have also self-diagnosed carpel tunnel syndrome in my right wrist), but I know enough not to go steaming in with it to a doctor. Going back to childhood seems a bit extreme, but I did have some autistic-like features back then - not that I think I am actually autistic. But I wasn't a happy child and certainly didn't grow up into a 'normal' adult.

Re #4 - I suppose you're right. I should give sleep more attention, considering how terrible it can make me feel :-/ And, yes, food does affect my sleep if I'm still digesting stuff by the time I go to bed. And most of the time I still am, as food doesn't pass that quickly through me.

I'll tell my doctor that in 10 years of having Crohn's that I don't feel anybody has helped me or taken me seriously and with that in mind it just seems pointless even having a gastro doctor at this stage. He can make of that what he will. I don't think, though, he will know anybody who will be able to help me. I'm just not that optimistic. I think he would have to have a personal involvement or interest in IBD to be able to recommend specialists, and there is no sign that he does. It's a small surgery, and I think I'm the only patient in that place who has ever taken 6MP, judging by the difficulties I had in getting it prescribed the first time I was put on it.

because sometimes when we're feeling low all we can do is present as an incoherent block of misery - described me to a 't' ;p

Raw facts:

- # of BMs: can vary, but 3 a day is a good estimate at the moment. Even if I eat more it doesn't go up by much - to 4-5, maybe. Always liquid. Sometimes undigested food particles (sorry for TMI)
- Pain levels pretty dependent on how much I eat. It's never acute or agonising, so 1-2 on days where I eat more, 0-1 when I eat less. Presents as a constant, deep ache in the pit of my stomach. Occasional painful cramps, but not often.
- 2 today, I'd say :-/
- Better than average today; I dunno, 6? <_<

I've had a go at the CDAI and always seem to get a low score on that thing. I don't go loads of times a day, have extra-intestinal complications, etc. so the total result is a low score. I know I have disease activity, in the sense of having visible Crohn's on scopes. Think my previous GI was a bit alarmed by how bad it looked, and she made no bones in telling me how bad it was. But the current doc I saw was all, "oh, it looks bad but it isn't that bad really". I don't know who to believe. Just fed up with the whole lot of them. They're useless. They couldn't cure a headache with a shed full of paracetamol and ibuprofen.

Phew. Dreadfully sorry for inflicting another long post! Don't feel you have to reply in anything like the same depth. Like I said, I just end up typing and putting thoughts down on paper. (Or the screen, rather.)

*nagging inner voice of crippling uncertainty* Perhaps, just perhaps, there really is nothing more which can be done. If the hospital won't pay for Remicade for more than 3 infusions and surgery is refused, I actually don't see what more can be done. I'm willing to go on Modulen for a while, but if the Crohn's comes straight back I'll just end up back to where I started rather quickly, I suspect.

Don't get me wrong. I do seriously appreciate what you're doing for me, more than words can really express here. I just have a sinking feeling right now that I have to live with this, there's no way of making it go away, short of cutting out most of my intestines.

Am I wrong? Is tiredness and the effects of that bowl of cereal getting to me? :/

ps. This may be a long process, NCOT, and you may not get results at your first appointment.

But the transition to strong self-advocacy may work wonders for you and the level of care you're receiving. We'll just have to see.

NCOT, I'm still super-tired today so may not be able to write much, but it's an awful problem, what you're facing.
I really wish you had a friend or advocate who worked in the health system, who'd be happy to come to your appointments with you
and speak for you when you feel you can't...

At this point, i have in mind a letter to your gp, rather than a summary of symptoms like the one I've shown you... esp as you're finding
it so hard to express yourself at appointments.

I'll try to email you, ok, either tonight or tomorrow, energy-willing.

Ivy (let's say it in unison: bleurgh).