HealingWell
Search Close Search
☰

Wish me luck for my appointment tomorrow, HW

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
1 2
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 10/13/2010 12:20 PM (GMT 0)
I only have a few minutes before I have to leave (Wednesdays are usually spent with my mum babysitting at my brother's), but in reading Ivy's post I realised I left out, uh, a certain fact :-/ I didn't see my usual doctor yesterday, which makes it even more awkward. I say "usual"; I've only seen her about 5 times, but on the NHS that's practically permanent. Anyway, it was enough times that I was just about getting used to the concept of her as "my" doctor. Needless to say, I was presented with a brand new girl yesterday, who also brought in another doctor I had never seen or heard of. They weren't unpleasant or anything, but as they don't know me and I don't know them, I don't feel like I can write them a personal letter. I don't even know the girl's name, or what she is: a doctor, a trainee doctor or a nurse. She looked pretty young and inexperienced.

Erm... Tsitso, I did read your post as well, of course, but I'm starting to feel a bit rushed for time! Probably not the time or place to say it, but I did read recently that a certain criminal had got his just desserts; I didn't reply that day and ended up not replying at all, but just to let you know I was truly glad to hear it.

Just to add: I used to be in denial, but I don't think I am any longer. I know I have Crohn's. I know it could get worse. I guess I'm banking on the fact that it's stubborn but stable. In some people it's not stable: their Crohn's worsens very quickly. Mine worsens very slowly. I could be wrong, but I don't think I have the type of Crohn's which causes dangerous complications out of the blue.

@Ivy - I'm still thinking about the letter-writing idea. I think it's a good idea and hope I didn't sound unnecessarily dismissive of it. I'm just wondering if it would work, even if I have new medical folks in town. You did make one or two points, which I hadn't really considered. Namely they would probably assume that I'm fine and dandy, and not that badly off at all...

@choc - You're lucky to have found a good doc and I'm happy for you that you have, but for me: nope, can't see it happening. I've never seen the same doctor for long enough to be able to get to know them, for one thing.

Okay, I gotta rush now! Later, folks.
Posted 10/13/2010 1:21 PM (GMT 0)
Ok, make your next appt, then when you get there find out who the nurse is that is running the clinic. There is always one, who controls who sees who ect ect. Then request as nicely as possible to see 'your' doctor, the person who you feel most comfortable with. I always add in i'm happy to wait as long as needed to see my doctor, it seems to put the nurse in a good mood. Thats how i see my doctor rather than his registrar (sp?) or even WORSE the GP who knows s*d all but thinks she does (shes particulary nasty, of the opinion that patients should be seen and not heard).

Huni everyones got the type of crohn's that can just upchuck destruction one day. Its the point of it i think. Maybe you could talk to PALS? they are patient advocates i think, maybe they might be able to fight your corner to seeing somebody on a regular basis, maybe even help in the battle for the 'better' meds? i know the 6mp is working but its not really 'working' in the sense your not in remission.

Do you mind me asking what hospital your going to? I can do some googling and find ssome numbers or people to help you fight back. This is hard enough without having to fight the NHS as well. I've always had such a good time with the NHS, although they nearly forgot my surgery! I was on the system, but hadnt gotten a pre-op assessment! Maybe your GP could ring for you, and request you see the same doctor each appt.

I'm just throwing out thoughts here, so feel free to dismiss stuff i just think that if you could build a relationship with one doctor it would really help you.
Please know that i DO understand what its like to not trust doctors and nurses. When i was diagnosed i was assaulted by a nurse and by my GI. My GI (at that time) did a colonoscopy, i had mazimum dose of painkillers ect, but the pain was excruitiating. I screamed the whole way through it. i honestly thought she had perforated my bowel. Mum could hear me in the waiting room. GI refused to stop despite me repeatedly begging her to. GI insisted that i have an NG tube inserted to have a small bowel follow through. I was uncomfortable with the idea so the nurse pinned me up against the headboard and tried to force it down. I had a massive panic attack and withdrew consent. I would have complained but i was leaving within two days anyway and i knew i would never be back.
By the time i returned to england, and i got under my new GI i was a mess. He wanted to place an NG tube to do enteral feeding. I flatly refused and promptly had another panic attack, just at the thought. It has taken years but i have managed to build trust in my doctor, although he still hasnt gotten an NG tube in! It also took him 3 years to get me to have another colonoscopy and then i insisted on being as knocked out as he could do.

Sorry turned into abit of an essay, just know your not alone, and we at healing well will fight your corner. I'll even ring your GI myself and give them a roasting (if you want!) xx
Posted 10/13/2010 3:29 PM (GMT 0)
Well said choc :)
Posted 10/13/2010 9:40 PM (GMT 0)
Yes, great post, Choc :-).

NCOT, I can't believe they just chop and change doctors on you like that. How on earth do they expect you to have reasonable care in that situation?

I'd still recommend writing, because at least it will help you to clarify your thoughts and expectations, and get some of the frustration out of your system. As Choc said, a patient advocate could help, and maybe you could also show the letter to your gp, just so s/he knows how you're feeling?

Huge hug to you, hon.

Ivy.
Posted 10/13/2010 9:40 PM (GMT 0)
ps. Isn't it awful when even the doctors start looking like infants??? :-)
Posted 10/14/2010 1:32 AM (GMT 0)
@Ivy - You have mail :p

I felt quite awake, almost lively, when I started it, so I thought I would be good to write that and reply on HW as well. No such thing. I feel shattered now.

@Choc - That experience sounds horrifying. In a way it was a shame you didn't have time to complain, although I suppose in doing so you would have run the risk of prolonging the trauma. Sounded like that GI and nurse both deserved to get struck off, not just disciplined.

I have not had any outright abuse like that from a doctor or nurse. I can't complain about a single person who has carried out a medical examination. In fact, at my last colonoscopy the nurses were lovely and even the surgeon guy who did it seemed like a nice man. They're not the ones who I see in the office, though. I gave a couple of other examples to Ivy. They are not big things in their own right, but when I get things like that in every appointment for 10 years, that's when I snap.

I admire you almost beyond words for being able to fight your own corner, but I cannot do that for myself. I don't know why. Maybe if I had a black and white case of abuse or negligence I could. Something so obvious that everybody else could see it and identify it as outrageous. But otherwise I'm very conscious that I could be painted as a neurotic, somebody who is expecting the unrealistic. I'm an avoider. I'm angry but I bottle up my anger. I swallow it. I rationalise things, but the suppressed anger doesn't go away. It just gets worse. Bit like Crohn's, really.

Thank you (again, almost beyond words) for offering to fight my corner. But I must decline. For now, I just want to avoid the NHS. I don't want to be under their aegis. I doubt the wounded, hurt, angry feelings will last forever, but for now I do just want to deal with my Crohn's alone. If an emergency should ever arise, I would go to A&E for it.

I haven't decided what to tell my GP yet. I think that's something I'll just play by ear. If I told him anything, it would only be under the proviso it was "off the record". Don't want record of this going in my medical history.

I know, I know. I'm too scared to make waves, make vocal my anger, etc. It's partly because I do feel like I'm making a mountain out of a molehill, but I can't help how I feel. Even if I'm overreacting, expecting special treatment, or whatever, I can't stop doing it. I can't rationalise the resentment away. I have tried; it has got worse, rather than better. And I'm not even sure in my own mind if I have any truly valid reason for it. It's just easier to run away than to make vocal an unfocused, generalised resentment against an entire system.

*collapses* Phew. That last bit did just come pouring out. Thank you for giving me space to vent, folks. I can't talk about my Crohn's or other issues to anyone except my mum, and she only gets about 1/10th of it... *hugs to the people in this thread*

Edit: I just remembered. Choc asked me which hospital I was at and I forgot to answer. Feel a little bit awkward saying, but I'm at Stoke Mandeville.

Post Edited (NiceCupOfTea) : 10/13/2010 9:11:01 PM (GMT-6)

Posted 10/14/2010 6:15 AM (GMT 0)
Hang in there and know that bad days will end and a new one will start. From your last post I can tell that you hate being a burden on anyone and drawing any unneeded attention. Believe it or not, most people with chronic diseases have this same attitude and it can get us into trouble sometimes. We get to the point where we don't want to come across as a hypochondriac or cry wolf when we are sick. We get so afraid that our doctors will not listen to us or stop listening to us that we start withholding information from them. You need to realize that you are a good person who is fighting a battle that many people would not even dream of. It is a battle that you did not ask for but are not going to quit because we will not let you stop fighting. You came to this board like all of us for support and that is what you are going to get. You have done way too much and gone through way too much to stop letting your doctors try to get you into remission.
I can understand your frustration with your doctor and the lack of bedside manner or personal relationship. That is not just a problem there but everywhere. I have had to change G.I.s before for this exact reason because I need someone who I trust to help me in drawing my battle plan. It has been difficult but I found the best thing for me was to use my primary care doc for almost everything and my G.I. as a help to his medical plan. My primary care is an amazing internal medicine doctor who I share a lot in common with. We have a friendship that goes beyond the office door and we even share the same religion which helps him understand my thinking sometimes.(Not that religion is going to change my crohn's but he is also a leader in my church and can understand me well from an emotional standpoint too) Now, I am not telling you to not go to a G.I. but I am challenging you to find a doctor that you trust will meet all of your needs both from an emotional standpoint and disease standpoint.
I have also found that I need to have goals that are obtainable inorder to reach remission. The other night my wife had a really hard day with my disease and was feeling like we just have too much on our plate. She can't understand why the doctors can't get me into remission and why I am not upset with that. She has started getting bitter with life and wanted to know why I am not. I explained to her that while she is praying for my disease to go away, I am just praying for a few good hours. I know that I have an incurable disease and am grateful for good time if only for a few hours. She finally decided that even though she thought she had accepted my disease, she had not and she needed to do so. The last few days went a lot better for her when she made a conscious effort to change her attitude. Set goals for yourself and eventually those small goals will lead to the big one that you are striving for.
Thanks for taking notice of my other posts too. I scared the crap out of that guy and pretty much the whole gang by standing up for my family. I even scared them more when I decided to skin my deer that I shot hunting right in my front yard. Typically I would have done it where no one can see but I decided to make them think I am sick in the head and took my fine time doing it. haha
✚ New Topic ✚ Reply
12