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Wish me luck for my appointment tomorrow, HW

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Crohn's Disease
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Posted 10/11/2010 11:22 PM (GMT 0)
It's just the usual routine hospital appointment, where once again the NHS can prove its signal indifference to my case. (I probably take it too personally... skull)

But hopefully this time it will be a routine hospital appointment with a difference, as this time I'm going to ask if I can try an elemental diet. Now, I know I don't have as serious Crohn's as many of you, but I'm sick and tired of not having had any remission from this disease. All medications tried thus far have made no difference, and I've been rejected as unsuitable for both Remicade and surgery. In short: I've run the gamut of conventional treatment. I can't see my GI doc coming up with anything new tomorrow, so I'm going to ask her if I can try this.

I've been nervous about it for days, no weeks. Doctors tend to bring out the ol' social phobia in me at the best of times. If she says yes, no problem. If no, I will have to argue for it and I'm not used to doing that. Makes me anxious.
Posted 10/11/2010 11:30 PM (GMT 0)
I've stopped DR's in their tracks as they headed for the door to ask questions and make them take a bit of time.  They finally realize I want a bit of their time and deserve it.  Write your questions/notes down and pull them out to help you out.  I make my wife do this as she gets serious white coat fever.  Good  luck and make them take your time.
Posted 10/12/2010 1:45 AM (GMT 0)
Good luck and good thoughts.
David
Posted 10/12/2010 2:07 AM (GMT 0)
good luck!! like mdf34 mentioned- I have started writing notes with lists of questions and i take it out and use it during the appointment- i tell the dr up front i have brought a list and it seems to work for me and for the dr- they seem to respect preparation or something... i find the dr will at least let me finish the list. if u need more time to think and it seems the dr is about to jet outta there, then look at the list as if u have another question, it will give you time to focus and get back on track and get every minute you can outta that appt. best of luck

B
Posted 10/12/2010 2:31 AM (GMT 0)
Thanks, folks :p

Writing a list of questions is probably a good idea, but for some reason the idea of it just makes me even more nervous. I know pretty much what I want to ask anyway; it's really mustering up the courage to ask. And then being prepared to argue for a particular treatment. I have never done that with a doctor before. I've always just gone along with whatever. The last couple of appointments I've been a bit more opinionated, but still ended up giving way to what the doctor wanted (mainly going back on the 6MP, which I'm still on).

If she wants me to go on a maintenance dose of steroids I'm saying no to that. Would rather live with the Crohn's than the long term effects of steroids.

Easier to say no, though, than to actually argue your case for something. That's new territory for me.
Posted 10/12/2010 3:52 AM (GMT 0)
I am sending you millions of good thoughts and good wishes, NCOT.

Another thing you could do is ring your doc's secretary first thing and warn him / her that you want to discuss elemental feeding during your appointment. That way, the doc is prepared, and you won't have to summon your nerves to open the conversation, because s/he may well start it for you.
Posted 10/12/2010 6:29 AM (GMT 0)
Good luck, good luck, good luck!!! Let us know how it goes!
Posted 10/12/2010 10:21 AM (GMT 0)
Best of luck huni. Let us know how it all goes, and i'll be thinking of you today!
Posted 10/12/2010 11:26 AM (GMT 0)
Ivy, there is no secretary. Well, there is but she works for the top consultant gastro there, and I have never seen him. I spoke to her over the phone once, and not only found her unhelpful and unwilling to pass on a message, but she had never even heard of the doctor I see. I was like "huh? how can you not have heard of her? She works in your department!" Mentally, of course. Not to her face...

Anyway, thank you muchly, folks. I'm feeling low right now, after a bad night's sleep, but I'm hoping that by the time I get a shower and lunch, I will be feeling brighter and fresher. Again, thanks. Even if I don't perk up, I will still ask about an elemental diet. Not letting that one slide, unless she comes up with an acceptable alternative course of treatment, which seems highly unlikely...
Posted 10/12/2010 11:43 AM (GMT 0)
Wishing good luck and hopes and prayers for you. Hope today is a good day...
Posted 10/12/2010 1:18 PM (GMT 0)
I hope you will have a positive experience at the Drs. office and that they can do something better for you to get you well...
Posted 10/12/2010 3:33 PM (GMT 0)
Just adding my good luck wishes too. I would def write a list though, not just regarding trying elemental diet but why you want to try it as opposed to anything else and try and think in advance what negatives your consultant may throw back and how you can respond to them. I think that if you go in with a list it shows that you have done your homework :)
Posted 10/12/2010 5:04 PM (GMT 0)
It went weirdly...

As far as I'm concerned, I'm done with hospital treatment. I'm not saying I'm right or I'm wrong; I'm just done with it. I don't want to know anymore. I am tired of it. I didn't get the blood test done, I didn't arrange the next appointment and I'm going to cancel the upper bowel test when it comes through.

I will carry on taking the 6MP because apparently my bloodwork is now good, so despite appearing useless it probably is at least keeping my Crohn's from getting any worse. I'll also look into B12 and iron supplements, and try to put on a bit of weight if I can. That's it. That's my treatment plan for myself. If I do have strictures in the upper bowel, they're certainly not bad enough to be causing me obstructions; I'm not worried about getting an obstruction out of the blue because I obviously don't have that type of Crohn's.

So: that's it for me. I'm getting out of the system.

Edit: Sorry. I know I'm depressing and I never, ever have any good news. Hopefully this is the last time. Sorry :/

Post Edited (NiceCupOfTea) : 10/12/2010 11:13:19 AM (GMT-6)

Posted 10/12/2010 5:48 PM (GMT 0)
GOOD LUCK!! hope all goes well and you get what you want. Bev x
Posted 10/12/2010 6:20 PM (GMT 0)
I take it you have had appt? I always find the times posted confusing because of the time difference. What went wrong-did consultant not listen or dismiss your thoughts?? OK, so what went wrong? How do you know bloodwork is good if you didn't have blood test done? Questions, questions :) If you feel that the cosultant is not listening or considering your welfare then you need to get back to your GP and ask to be referred to someone else. You really cannot go on like this because you are going to burn yourself out .
Posted 10/12/2010 6:43 PM (GMT 0)
What an awful system to make you feel like this - I am so sorry you are not getting the support you obviously deserve :(

Do you get your 6mp from your GP? Maybe you could talk to your GP about how the hospital system is letting you down?

Gook Luck :)
Lesley
Posted 10/12/2010 6:53 PM (GMT 0)
Had the appt... Had a blood test done at GP's surgery two weeks earlier.

I dunno what wrong exactly. All I know is 10 years ago I was healthy, if not happy, and never saw a doctor from one year to the next. I'll never go back to being healthy again; that I absolutely know. I'm not having any more tests done, I'm not taking another drug - I am absolutely sick of it. Crohn's is incurable. I'll never go into remission nor am I ever likely to be an emergency case either. What am I in the system for? So I can pretend that something is being done to "help" my Crohn's? *swears* No. No, no, no, no, no. Nothing is being done whatsoever. It's all an illusion, a pretense. I'm outta the system. I'm not obliged to stay within it, and I don't care to stay in it anymore.

No point seeing another doc. Been at two previous hospitals already. The doctors and nurses, in the main, have done their job. I'm just sick and tired of the being messed around, being told contradictory stuff all of the time, and the ineffectualness of medical treatments for Crohn's. I might as well just do what I decided 10 long years ago: learn to live with the symptoms.
Posted 10/12/2010 6:58 PM (GMT 0)
@Kiwi - Nah, I'm not gonna kick up any waves... Besides, it's probably just as much me who is at fault as the system, if not more so. I shouldn't be this angry but I am. It's not come out of the blue, but has been building up for a while. Put it this way: the NHS isn't going to change, and that's not its fault: it is what it is. But I am what I am, as well...

PS: Yes, I get my 6MP from the GP's surgery so getting that won't be a problem.

Thank you, by the way...

*musters up a smile and face cracks... >.>* :)
Posted 10/12/2010 7:06 PM (GMT 0)
My heart goes out to you and I do understand how you are feeling and the despair of it all. So what are you saying? You are just gonna give up on it and let it beat you? You are made of stronger stuff than that and if you were a little bit closer I would give you a kick up the butt :) I will not let you throw in the towel now!! You hear me?
Posted 10/12/2010 7:21 PM (GMT 0)
OK the Momma Bear in me is coming out. You most certainly can go into remission. Many of us have. I spent 10 years untreated letting Crohn's do its damage, another 10 years trying to undue that damage, and have had many years since living a pretty darn good life with not too many complications. BECAUSE I refuse to let this disease take my life away from me.

Also, you most certainly can become an emergency case at any moment. I had just been officially diagnosed and started treatment. Things looked like they were under control, I had my doctors OK to proceed with my planned vacation. I was trying to pack, but was in so much pain my mother came to help. She took one look at me, and ordered my husband to take me to the emergency room. I spent my vacation in the hospital on so many medications I couldn't keep track. Lesson learned. At any given moment any one of us is only a few hours away from a hospital stay, because left untreated, this disease WILL do damage without our knowledge.

If the doctors you are seeing are not listening to you, you need to find doctors who will. I don't care how many hospitals you have been through, there has to be a doctor who will listen and care, ask your GP for help. Clearly your GP has some grasp since that is where you are getting your 6MP. Start there and move forward. You also need to find someone who will help you with your depression, it isn't helping your general well being.
Posted 10/12/2010 8:45 PM (GMT 0)
NCOT, I've emailed you.
Posted 10/13/2010 2:01 AM (GMT 0)
I'm did read this earlier, but was too shattered, really, to respond. I'm no less shattered, but I just want to say that I appreciate the replies but I haven't changed my mind. There isn't a doc out there who can help my guts or my mind. If I had not seen a single doctor for 10 years, my Crohn's or depression would not be one whit worse: to me that's suggestive of something, eg "get out, this is a waste of time."

@Ivy - check your Tuesday TLC thread for my reply.

Post Edited (NiceCupOfTea) : 10/12/2010 8:07:26 PM (GMT-6)

Posted 10/13/2010 6:01 AM (GMT 0)
NiceCupOfTea, please excuse me if I come across as being to blunt and know that I only have your interest at heart. You and you alone are only hurting yourself by not allowing treatment. The doctor that you see will carry on with her life and the hospitals will continue to do business, but you my friend will be the one suffering because you let yourself fall into the trap of denial. We have all been there to some extent and can understand your extreme frustrations with your situation but denying yourself the care, testing, and care that you need is only going to hurt you. It is great that you are continuing your 6-mp so I can honestly say that you are doing better off than I was when I went through these same emotions. I got so frustrated with it all that I just went off everything and neartly killed myself. I did not realize how much the remicade was actually helping me until I went off of it completely and saw how sick that I actually was. Now I decided that not only is it a bad idea to stop treatment, it is a selfish idea. It is selfish because of my wife, family, and friends that have to put up with me being sicker and also selfish because I am risking my life by doing that. Sure your disease may not be as severe as some on here but that does not mean that you are above a perforation, stricture, blockage, fistula, infection, abscess, or just plain pain. Please consider finding a different G.I. and realize that you are not alone. All of us get frustrated but just please take a deep breath and know that it will be ok.
Posted 10/13/2010 7:42 AM (GMT 0)
NCOT, I'm wondering if it might be helpful to write to your doctor and let her know how you're feeling.

If you are feeling that all this is a waste of time and completely pointless, then I think it's up to her to convince you on why you should persist with the treatment she is prescribing. Obviously there has been a breakdown in doctor-patient communication: she is assuming your understanding and compliance and maybe even your cooperation, without realising how completely fed up you are.

This way, too, if you do disappear from the system, she will know because you're unwell and unhappy with the treatment you've received; not because you're well and feeling as if you can get on with life, if that makes sense.

I also wonder if it would help you to actually specify, in writing, exactly what your hopes are, e.g., "I would be more satisfied with my health if I could:
* have more energy
* eat without fear
* etc

and then provide evidence of how your current state of health is, in your opinion, unsatisfactory.

You could then say that you feel that she and the health system is / are unwilling to lift you out of your current state of half-health, and that this is making you feel that it would be better for you to go it alone, and save yourself the constant disappointment of having to deal with the system and (what you feel) are the false hopes it keeps giving you.

She can be in absolutely no doubt about what you're feeling, then, and I think that any responsible doctor would HAVE to act after getting a letter like that, even if it's just to sit down and talk to you *properly*, and explain that they can't provide any extra treatment just now because their budget won't allow it (if that's the case), but explain what the system might be able to do for you, if you just keep complying with their treatment plan.

imho this isn't being unreasonable or unnecessarily demanding: it's you stating your case, asking for more help, and explaining that you are unhappy in your current state of health... which, I think, you are.

Obviously I've written this with my own interpretation of what you've been feeling and you'd put this into your own words, with your own sentiments, but might writing a letter along these lines help?

I think you know I absolutely understand where you're coming from, but I must agree with the others who have said that trying to go it alone can be a really, really, bad idea. That said, I really do sympathise. You're walking a hard road there, and I have tons of respect for the fact that you do keep walking it.

Ivy.
Posted 10/13/2010 9:21 AM (GMT 0)
Huni, i know there are good doctors in the NHS, i know because i have one. Ok me and him have had our differences, but we are pretty much in the same chapter if not the same page. I have and will continue to tell him he's wrong about treatments ect. Keep trying to find that doctor, theywill make a huge difference in your life.

Plus you CAN suffer from a sudden obstruction. I did, totally out of the blue, just blocked right up. I havent done it since, but that is why i'm having a bit taken out. so hopefully i can avoid that pain for another few years (crosses fingers hopefully).
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