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Posted 5/11/2009 9:57 AM (GMT 0)
just want get this off my chest

I'm having real problems coming to terms with having CD and the lack of individual approach to MY experience that I am getting from health people. Although I was officially diagnosed in 1996 after emergency op, after a couple of years of seeing specialist and a few tablets I haven't had treatment or seen anyone since. Even 2 admissions for obstructions didn't trigger treatment - just put down to complications (scarring) from first surgery. 8 weeks ago - after ignoring symptoms and putting down to stress I ended up having surgery again. Now I'm in the 'system' and struggling to understand who is going to look after me and more importantly do they even care what I think!!!!! mad

 

I don't know if the last few years I have been in 'remission' (whatever that means) or just managing low level CD. I do know that I was ignorant about smoking and use of Ibuprofen - both of which I was overloading on the couple of months before my op.

Anyway - reason I'm so frustrated (but swinging to depressed and anxious) is I plucked up courage to speak to specialist IBD nurse; I woke up crying again this morning and just thought - this is going to make me far more ill than the CD itself so ring someone. I guess I hoped for some sympathetic noises about how difficult I was finding things and that there would be opportunities to negotiate a care management plan through discussions. Needless to say I got a more clinical -'you're in a high risk category for further surgery so this is the medication that is being recommended (Azathioprin), and of course you can refuse......, and lots of people are fine and lead a 'normal' life'. At some point it would be just nice to have someone try to understand what's been normal for me, discuss what's happening in my body now (am I in remission?) and how things might affect my life in the future. shakehead

Am I being too naive?  can we really negotiate or expect a more person-centred approach? I am such a confident, articulate person in my work and regularly have meetings with high level health executives but feel like a naughty schoolgirl when daring to ask about my own well-being. I am really not an anxious or weepy person although I do like to understand and ask questions. I'm on the verge of going it alone - I managed for quite a few years without being in the system and there are no guarantees so sometimes I think it might be better to be ignorant, get on with my life again and if the worst happens so be it! At least I can blame myself in the future for not doing something rather than constantly wondering about side effects of meds or being reminded when I see health people even for regular blood tests.

It's good to vent!!!!! might not be answers............

Posted 5/11/2009 1:29 PM (GMT 0)
I am a firm believer in everyone taking maintainence meds. I learned the hard way how much damage this disease can do if you are not being proactive. In my eyes at least, its an ounce of prevention. JMHO
Posted 5/11/2009 1:53 PM (GMT 0)
uklass, Dont feel helpless about this disease. It may be unpredictable and different for everyone but don't settle for less than satisfactory answers to your questions for the docs. Go in with a list of concerns so you dont forget anything. Ask for complete and understandable answers. If they don't know the answers, ask them who you could talk to that will know the answer. I actually told my doctor to talk to me like I'm 5 years old if that's what he had to do for me to understand whats going on. Even though they could be wrong about some things, you'll have some insight as to what they are trying to accomplish. Most doctors and nurses are kind and thoughtful people but a few arent and those are the ones you need to stand up to. Almost always if they avoid a detailed answer its because they dont know whats going on either. Then its time for a second opinion.
Posted 5/11/2009 4:57 PM (GMT 0)
What you're feeling is very natural and normal, I found exercising regularly helped bring me out of severe depression which also helped my anxiety all due to this stupid disease...I still continue to exercise regularly and I found that altering my diet has also helped with my emotional/mental and physical state as well. Feel better soon ((HUGS))).

:)
Posted 5/11/2009 6:40 PM (GMT 0)
Hi Uklass,

Sorry to hear you are having such a hard time. I've been there. Took me months after my initial diagnosis to come to terms with having to take my medication and that I will have to deal with this for the rest of my life. I fought it with all my being but finally had to come to terms with it. I couldn't hide from reality any longer as I was very sick. And depressed.

My family and friends were all about what I needed to do. So were my doctors. But nobody validated what I was going through. So I gave myself permission to ackowledge my fear and sadness. I validated my own feelings and let myself have a few days of "pity parties". Then it was time to deal with reality. 

I decided to take back whatever control I could and learned everything I could about this disease. I borrowed books from the library, did research on the internet, asked people if they knew anyone I could talk to. Made sure I was comfortable with my GI and when I wasn't I asked to be referred to another one. Don't let them tell you that you don't know anything. You know your body better than anyone. Trust your instinct. I wrote down all my questions so I was ready when I went to my appointments. I became a member of the Crohns & Colitis Foundation and continue to learn new things from them. I joined this forum and finally found support from people who know what it's like. It's hard to find medical professionals who will take the time to offer the empathy we might want. Not because they don't want to but they just don't have the time to. That's why this forum and others like it are so great. 

Take one day at a time and it will get easier. Remember.......breathe. And we're here for support any time you need it. All the best. 

Posted 5/11/2009 11:36 PM (GMT 0)
UKlass, I hope that Sno (from Scotland) will be along shortly to share his wise perspectives on your situation.

An individual, person-centred treatment would be ideal, but the sad reality is that you are unlikely to find it... especially when you are so new to the system. The doctors and nurses are overworked (and I think often have a bad attitude) and the whole system seems to mechanistic and impersonal. I find it easier to reconcile myself to simply being a cog in the medical machine, because then I can be pleasantly surprised when someone does bother to talk to me like a real person. I find the personal touch happens more and more often, the longer we stay in the sytem; after all, it takes time to build and develop relationships.

Please think about staying here at Healingwell and building relationships with the other Crohn's patients here, and educating yourself about Crohn's from the discussions on this forum. I've learnt more about Crohn's here, on this forum, than I ever have from my doctors.

In terms of a care management plan, what sort of help and answers are you after?

Hang in there,

Ivy.
Posted 5/12/2009 10:22 AM (GMT 0)
thanks for the replies everyone. I'm glad I've found this site - I've never done anything like this before. I have friends (who are great) and family (who are not so great)

but they don't understand this situation and many are struggling with me being less than the strong confident person I usually am; I think it scared them more than me when I ended up in hospital. Anyone I mention it to has often heard of Crohn's and it's interesting when they reel off what they think it means - skeletal thin people with loads of diarrhea and on steroids (SO not my experience).

Ivy - you ask me what I want from a management plan? I'm a bit  all over the place about this but it's mostly about information and who can I trust with my well-being. Having just had surgery and no real awareness that I had the disease up to that point (and how long it had been building up) I would like to let my body adjust to it's new state - minus some bowel (I don't know what has been removed and what difference this makes), stopped smoking, lost weight (a good thing since I was obese now just overweight), changed to healthier diet and letting thyroid & other hormones settle down. Then, once I know what this feels like (a baseline) can I tell what side effects from medicines I am having or if am I having  'flare'. So many posts on this site show peple have had lots of symptoms and have been glad to have treatment, but equally I have seen so many examples of people being on cocktails of drugs or having side effects. I don't really know what 'remission' or 'flare' means .

I'm not saying no to remission meds, just can I take it really slowly as it's a decision that will be with me for the rest of my life? A rash may be relatively insignificant to medical people but if you're in the public arena it is a big deal. If your life involves travelling a lot or being outdoors, sensitivity to the sun is a big deal - I don't want my situation to be dismissed out of hand.

I want to know who will be involved in looking after me - I rarely need to go to the doctor and so having all these extra people involved is really confusing. Actually I might do a different post to check out other UK experiences - seems better in USA where people pay for treatment and so can choose who they go to (I don't mean it's better to pay, just the relationship is different).

Thanks again

Posted 5/12/2009 11:18 PM (GMT 0)
Yes, I think I have a better idea of what you mean now.

I'm in Australia, which has a system similar to your NHS, so deal with similar problems... but I think yours are more severe than mine.

You said that you had an IBD nurse and I presume you have a gastro and a gp as well. Do you have any other medical professionals involved in your care? I ask this because it sounds to me as if you need a counsellor who is skilled in dealing with people who have chronic illnesses. You might also benefit from having an advocate too, though I don't know if they are easy to find there (they aren't here).

I completely understand the types of answers you're seeking. I spent years, frustrated, seeking answers to similar questions myself... and was never given them. I think doctors tend to deal with the problem in front of them, and don't bother talking about long-term prognoses. Also, I think they are reluctant to commit (and endanger?) themselves by communicating a certain vision of your future, as they could appear negligent if something went wrong and your long-term health was worse than they had described.

I also understand your wish to establish a personal baseline, but I'm not sure if that will be good for you. We do have many, many people who suffered severe relapses very soon after surgery. It *may* be that your doctors are wanting to start you on the Azathioprine immediately because they suspect you may relapse very soon, and are anxious to prevent it. Or they may have a different reason... and I think they have a duty to communicate that reason, so that you can make an informed decision.

On a practical level, how do you communicate your needs, wishes and questions with your doctors and IBD nurse? Perhaps we can help you formulate a strategy to get your point across more effectively.

Keep hanging in there,

Ivy.
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