Getting Mad Now.....

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Veeka Vampire Volkova
New Member


Date Joined Mar 2009
Total Posts : 16
   Posted 3/12/2009 12:44 AM (GMT -7)   
Ok so I have had Diarrhea for about 2 weeks....all of a sudden i think its stopped and I now think I have constipation...Not sure though...

I have been in pain for so long that codeine is having no affect on me even if I take paracetamol with it...I have had really bad nausia and vomiting for god knows how long....

I had an appointment to see my specialist (GI) today but he sent me a letter canceling my appointment and rescheduling it for JUNE! Which has made me VERY mad as I have waited 3months to see him supposedly today...I can not go on like this...I have not ha a proper nights sleep in god knows how many weeks....I feel awful!

I am going to see my GP local doctor to ask him to change my meds as asacol is no longer working....If he says no and only my GI can do that then I am going to have to bug the hell out of the GP and GI to get me seen before June...

Do you think that it is fair me having to put up with this crap and not seeing anyone? Can my GP change my meds? Anyone got any solutions for me?

I am loosing my mind here, I dont know how much more I can take

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 3/12/2009 1:07 AM (GMT -7)   
Wait, you've been taking codeine? Who let you do that? I know some people do, but it isn't always a good idea as it can upset the gut and cause constipation or impaction. I do wonder if that is what has happened to you, Veeka.

If you start getting bad abdominal pain, please go straight to the hospital (or your gp) and try to get it sorted out.

It seems ridiculous that you are being made to wait for so long to see a doctor, especially as you are so unwell. I think it would be quite dangerous for them to make you stay this unwell for another three months. I agree with you: badger your gp until s/he starts badgering your specialist on your behalf. You need some help!

Where are you? I'm guessing Australia or the UK?

Ivy.
Co-Moderator Crohn's Forum.


Kittikatt
Regular Member


Date Joined Jul 2004
Total Posts : 422
   Posted 3/12/2009 5:17 AM (GMT -7)   

BADGER THE HECK OUT OF THE GI's OFFICE!!!!  You should not have to wait that long to see your GI, particularly when you're in a flare.

I was really sick this time last year.  I have 6-month appointments with my GI so I wasn't scheduled to see him again until June.  But I was in a full flare for the first time and I was scared. cry   I called his nurse in tears going on and on about the vomiting, overnight D, fatigue, etc...she NEVER called me back.  So I called her AGAIN.  Never heard back from her. 

So I called the front desk girl and told her I HAD to get in to see my GI because I was really sick and didn't know what to do.  So she says, "I'm sorry HUN...he's out of town this week."  So I said, "Well then get me an appointment with his NP, HUN!"  Then SHE says, "Oh, um...I don't know.  Did the GI say it was OK for you to see the NP?"  WHAT?!  What the heck is she talking about?  I need permission from my GI to see his own NP? I told her I did not CARE what the GI thought as he was NOT in the office which means his NP is in charge.  She put me on hold and I was in the next day for an appointment to see him.

 


Diagnosed in October, 2004 at age 32.
37/F/SC
Current Rx's: Colazal (generic), Omeprazole, Ferrous Sulfate, Librax, One-A-Day multivitamin, Probiotic, Omega-3 Fish Oil, Vitamin D, Vitamin A, Calcium-Magnesium-Zinc, Cranberry pills
Secondary conditions: mouth ulcers, joint pain, swelling ankles, extreme fatigue
Previous/occasional Rx's: 20mg Prednisone taper, Flagyl, Levaquin
No surgeries to date


snohare
Veteran Member


Date Joined Oct 2004
Total Posts : 2088
   Posted 3/12/2009 5:44 AM (GMT -7)   
yeah That's why I call the NHS No Help Supplied. Cynical and certainly far from true at times, but at worst... eyes
nonoThis GI was supposed to be seeing you in order to assess your needs - now he has postponed that for three months. In effect, he has assessed your needs without seeing you and has decided that you can wait another three months !!
The simple remedy I would be inclined to use, should I ever be unlucky enough to have such a dorkish dolt of a doctor (I'm lucky, mine is fine), is phone or better still write to his office stating your symptoms and specifically how they are making you unable to function on a daily basis, and that you consider such an extreme postponement of appointment to be grounds for a complaint to the local Health Authority, the General Medical Council, and in the case of adverse medical consequences, perhaps even grounds for legal action. That, I guarantee, will make him sit up and take notice ! He won't like it, but he will certainly get the idea that how you feel today really does matter, even more than the administrative needs of his appointment book. Half the battle is getting the doctor to feel that the symptoms, if they are ruining your life, are worth caring about, even if on some cloud-Gastro-land chart they are at the bottom end of the minor to major scale. By all means, apologise for going off the deep end when you see him - but get him to see you, and take you seriously !
I don't know much about codeine, but I do have the distinct impression that taking paracetemol with it is likely to be a pretty bad idea from your liver's point of view. This is not a theoretical abstract risk, this is real and immediate, so go carefully ! That codeine does not cut it for pain relief does not surprise me. Narcotics are the only relief in some Crohnies - not a pleasant idea I know, but hey, look on the bright side, British medical practitioners have one thing very much in common with US practitioners - a distinct, real and absolute determination not to dispense narcotics unless the "guidelines" (ie petrified-of-prosecution-by-authorities insurance company or medical committee) say it is okay. So at a guess, unless you can get referred to a pain specialist - which your GI might be glad to do, to get you out of his hair - you may not get them anyway, and certainly not immediately. You might want to hint that you'd be a lot happier if you could pain relief managed by a pain clinic.
Try writing down your symptoms and their effects upon your life as a daily log. This document (keep a copy for yourself) put into your medical record will not only give a clearer idea of what your disease is doing to doctors present and future, but will provide tangible evidence of any screwups, and this will be clear to any doctor who knows you are keeping him on the ball with the threat of "action".
Medical etiquette is crystal clear - due to a lack of indepth knowledge and advanced training, your GP is not treating this condition, his senior colleague the GI is. For your GP to intervene is usually considered tantamount to "poaching" a patient, a heinous crime in medical circles. (This is a hang up from a century ago, which has stayed due to legal issues over responsibility.) My experience is that the best you could hope for is a hurry-up letter from your GP, which is as slow and useless as you might imagine, although if your GP really feels that things are critical he or she has the ability to take independent action to radically alter your treatment, which is usually seen as a criticism of the doctor who should be treating you. Like I say, not to be done lightly - the sort of thing that can blight a doctor's standing in the medical profession. (Although depending on personalities and circumstances, some GIs might just say, "Thanks, we dropped the ball there".)
You are obviously in the UK - which Health Authority are you under ?

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 3/12/2009 8:48 AM (GMT -7)   
First of all if you are in emergent situation please get yourself to the ER (or is it A&E?). (I know as a midwife I will trust you would know when this is.)
Second, please call your regular doc and tell them about your chronic sleep deprivation (any doc worth their salt knows how important sleep is).
Three and most important think about the codiene, as the issues that ivy talked about.
Forum Co-moderator - Crohn's Disease:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


Valerie3
Veteran Member


Date Joined Feb 2009
Total Posts : 529
   Posted 3/12/2009 10:22 AM (GMT -7)   
Where do you live? It seems like this happens a lot around me (I'm in Canada). It gets really frustrating. I am lucky because my G.I. is seeing me once every 2 weeks right now until I get sorted out, but some people I know have to wait up to 9 months to get in to a doctor. This guy I worked with was diagnosed with cancer a few years ago, and he had to wait 4 MONTHS to get a scan to find out how advanced it was!!! Just ridiculous how hard it can be to get in to see some of these guys. You should call and be persistent and keep nagging them until you get an appointment sooner, because that is totally unacceptable. At the worst, I would go to the emergency. My G.P. will not give me meds for my Crohn's because she is not comfortable with it as it is quite specialized and she doesn't want to end up giving me the wrong medications. Good luck and keep us updated.

Veeka Vampire Volkova
New Member


Date Joined Mar 2009
Total Posts : 16
   Posted 3/12/2009 11:43 AM (GMT -7)   
Hey people...Just an update

So yeah, I went to see my doctor but he wasn't there so I saw some other 1, this woman she is such a B***H I don't like how she talks to me. Anyways I went in told her all my issues I had, mentioned i was on asacol and needed more, but wanted to know if there was anything else I can try as I dont think asacol is working well for me, she "looked" through my notes and said "us the doctors have not prescribed you asacol so I am not giving you a repeat prescription" I was like OMG "the hospital give me them under my GI instructions" she then had the nerve to say this to me " I see no record of you being on asacol so you must be taking it of your own accord" well that was it, I just lost it...I could not be dealing with this crap....

She then Turned round to me and said "You don't have crohns disease you have IBS" smhair I looked at her in shock....I started to get mad as I was in pain, being told I was a liar and was getting nowhere....She rang my GI's secretary and she said look at the hospital letter sent to the doctor in Nov 2008...So she did and in BOLD lettering it said IS BEING TREATED FOR IBD...but she still looked at me and said "you have IBS"

After about 2 hours of being in there and numerous checking of my records and calls to the GI...She told me to stop going to A&E as they don't check my medical records properly....She told me to stop taking asacol and she said I have an appt with my GI on Tuesday 17th March at 9am

ONE GOOD THING is that I am seeing my GI on Tuesday and not in June so thats a plus side, I just can not believe that stupid doctor called me a liar and stopped my meds??? *** is with that?

I am in the UK yes think am under north east lincolnshire medical thing thats what my area is....

I have had bad D for so long, vomiting, sleepless nights, bad abdo pain....yet my x ray an bloods show up as ok....I don't know if this is a flare up or not.....As for codeine, I dont take it alot only when I am in SEVERE pain and can not move....I don't think codeine works well anyways any more.....Usually i go to A&E about once a month as the pain and D/vomiting is so bad just cant cope....they just send me home with pain killers....A&E suck...as they say my xray an bloods show am fine ??????? how am I fine if I am like this??? someone help me? plz! Just shoot me I cant deal with this no more....

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 3/12/2009 11:54 AM (GMT -7)   
No way smhair ! That's one of the worst stories I've heard for a while.

I'm glad you're able to get in to see your gastro soon, but boy! your gp didn't make it easy, did she?

When you do see the gastro, it might be a good idea to ask him / her to write a letter explaining your symptoms and treatments that you can keep, yourself, and then present to any bogan doctor who presumes to not believe you. A few people here have done that and it does help... a little... though there are some blockhead doctors who won't even believe an official letter, either. It sounds as if you had one of those, and I'm really sorry.

It's hard enough having an illness. They don't have to make it harder, do they?

Ivy.
Co-Moderator Crohn's Forum.


Veeka Vampire Volkova
New Member


Date Joined Mar 2009
Total Posts : 16
   Posted 3/12/2009 12:10 PM (GMT -7)   
On the offical letter from my GI to my GP it says and i quote:

PATIENT IS BEING TREATED FOR IBD

IS AWAITING GYNECOLOGIST APT (POSSIBLE ENDOMETRIOSIS)

HAS H-PYLORI (ALLERGIC TO PENICILLIN AND ETHROMYCIN SO UNABLE TO TREAT AT PRESENT - DISCUSSION ON TREATMENT IS UNDERWAY)

SHE HAD APPENDECTOMY DUE TO APPENDICITIS

So where in that letter does it say I have IBS and DO NOT have Crohn's hmmmm...My wife and I think there is issues with the doc and they are trying to cover their own back due to a **** up on their part....

Also the reason the GP had no knowledge of me being on asacol is because my GI never contacted them informing them of my medication so basically communication between them is poor.... NOT GOOD!

But anyways I am seeing my GI on Tuesday, I am trying to write questions I wanna ask him...any suggestions?

I have something called C.D Tracker from a website called crohnsandme its cool, like a table that monitors bowel motion, amount of pain you have, amount of sleep you get, general feeling etc so I fill it in weekly :-) hopefully this will be helpful to him, I do 1 for my dietitian also a food diary... I see her due to CD and absorption issue in bowel...

Its getting me down, I just want to know what is wrong with me and want the correct treatment, but from today until tuesday I am not to take ASACOL or any other meds (don't know what that will do...I doubt asacol is working anyways but we will see....I just hope I don't end up really ill...)

Can people have the symptoms I am having but tests show up no active crohns? Does it mean I don't have crohns? I am so so confused....Someone just shoot me......

mtgman
Veteran Member


Date Joined Mar 2005
Total Posts : 1289
   Posted 3/12/2009 2:00 PM (GMT -7)   
move to the us...we can still see our docs (well at least for a bit longer til Obama screws that up too).
in all seriousness i find it horrible that you cannot get in to see a doc any quicker.
it seems as if i've had pretty good luck with docs here in arizona.
i never have a problem getting in to see them...i just lost my ins due to being laid off and our new ins didn't cover my gi...he referred me to another gi whom i saw yesterday...only 2 weeks to get in...and HE IS GREAT!!
scheduled longer appts for me so we can talk in depth while he gets all caught up on my history...got blood work and stool samles going asap, has all records electronicly in his system!! wow!

Becoming undone
Veteran Member


Date Joined Jul 2007
Total Posts : 927
   Posted 3/12/2009 3:11 PM (GMT -7)   
((((((((((((((((hugs))))))))))))))))))))
I know that a lot of people (esp those with just a little bit of training) mess up those acronyms all the time (IBS & IBD). She probably doesn't know the difference (and the IBS has been getting more attention, even in the yogurt commercials...not sure if so in the UK). These people are usually the worst to deal with . There was a saying about ...a little bit of knowledge...
Anyhoo, you DO NOT DESERVE THIS!!!!! You deserve to be treated better. Is there anyway you can report poor service?
Again, ((((((((((((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))))))))))))))))))
"The earth laughs in flowers"


snohare
Veteran Member


Date Joined Oct 2004
Total Posts : 2088
   Posted 3/13/2009 4:18 AM (GMT -7)   
idea If you do have endometriosis, Veeka, that may well be screwing up the bloodworks. It can often cause severe problems outwith the uterus, including in the gut - a fact often underrated in its significance. I wonder if seeing a gynaecologist who knows about these things would help ? Just a thought. (I don't know what endometriosis does to blood tests.)
You are certainly in "keep a written record" territory with your doctors. If they are not communicating it will usually be because they don't know how, and inevitably when stressed they will start playing the blame game, because they honestly don't know what went wrong and can't believe that it was their efforts that made a muck up of things. eyes People who cannot communicate usually have flawed chains of logic, regardless of how good their intentions may be. yeah

catpower
Regular Member


Date Joined Nov 2008
Total Posts : 192
   Posted 3/13/2009 6:55 AM (GMT -7)   
I'm sorry you are going through this Veeka. How frustrating! I am so glad that you are seeing your GI next week though. Hopefully you will be ok until then.

I think bringing your diary to the appt. is a great idea. Also, Asocol ended up irritating my stomach more, and I actually felt a bit better when I went off of it.

For years, my blood work never showed inflammation until just recently. So yes, it is possible to have active Crohn's and normal blood work and x-rays.
Diagnosed with Crohn's Disease; Meds: Entocort & Asacol; female in late 20s.

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