just some advice please

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wishiwasnormal
New Member


Date Joined Sep 2007
Total Posts : 12
   Posted 10/22/2007 3:50 AM (GMT -7)   
 
Well i made it to work in one piece!!! feels like i travel half way round the world not just ten mins up the road. There are times when ive made it i just want to sit and cry the relieve is that enormous still i always think there are worse off than ME. Sorry to go on but before i type anything else just have to say thanks for this site made me realise im not the Only one out there. Have joined the NACC via a post on here so Thanks again.
 
So ive been on the asacol for well over ten years with out needing anything else but i know myself since moving away and not being seen by a consultant for over 6 years i should start to demand i NEED something.
So when i walk into my GP and he asks how can i help and i sit there and feel like im at school again........ can anyone offer me some advice?
 
 
Diagnosed UC 1993
unable to remember what i USED to be on
currently 6 asacol


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23549
   Posted 10/22/2007 4:21 AM (GMT -7)   
If the Asacol is no longer working for you then you can request Colazal or Lialda in addition to rectal meds such as Rowasa or Salofalk (depending on where you're from). But wherever you are from, definately ask for rectal meds, they really do help! :) Just tell the GP exactly what is going on and if he/she is clueless - define it better for them because even though we may think we are clear in our explanations, sometimes they come out clear as mud. Been there, done that!
 @--->--SHERRY--<---@
Left sided Uc -'92 - Colazal, Canasa, 6mp, Prilosec, Biotin, Forvia
Allergies - Singulair, Allegra, Astelin(got the script - just haven't tried it yet!)
Secondary Reynauds Syndrome - '04 - Norvasc
Fibromyalgia - '06 
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wishiwasnormal
New Member


Date Joined Sep 2007
Total Posts : 12
   Posted 10/22/2007 4:32 AM (GMT -7)   
Hi Red

thanks for that i live in n ireland and my GP assured me he had good knowledge of UC when i joined his practice after moving six years ago, but as of todate ive not had one blood test or asked to see a consultant at the hospital.
As ive said im of an age where i should be standing up and shouting i need help but i havent and maybe its my fault i feel as crap as i do
Diagnosed UC 1993
unable to remember what i USED to be on
currently 6 asacol


CheesePuff
Regular Member


Date Joined Oct 2007
Total Posts : 92
   Posted 10/22/2007 6:05 AM (GMT -7)   
 
I was diagnosed with UC over 10 years ago and after moving to Ireland 8 years ago, struggeled to find a doctor who knew what UC was and the treatment required. I am pleased to say though, my new GP is great and knows the illness and I'm also being monitored by a GI in the Mater Hospital on a regular basis.
 
In case of UC, you should get a scope done on a regular basis, to monitor the illness.
 
Let me know if you need more details, happy to help.
 

wishiwasnormal
New Member


Date Joined Sep 2007
Total Posts : 12
   Posted 10/22/2007 7:33 AM (GMT -7)   
Hi Jepa

Thanks for that
When ive been to the gp before ive felt like he just wants me out of the surgery and im ok because im working.

I know i have to make a bit more noise this time

Out of interest what medication are you on

thank you again
Diagnosed UC 1993
unable to remember what i USED to be on
currently 6 asacol


CheesePuff
Regular Member


Date Joined Oct 2007
Total Posts : 92
   Posted 10/22/2007 10:25 AM (GMT -7)   

Hi,

I just went through a really bad flare-up, which took over 8 months to get under control, so I'm delighted that both my GP and GI consultant are well aware of my condition and know me personally. I have been through multiple courses of stereoids and am now on 100 mg Imuran, 2400 mg Asacol.

The imuran seems to be working fine with me and no serious side effects, though there is an increased amount of hair loss, not noticeable though. I recon I'm just paranoid after reading so many reviews here on the net cool The problem is, that we'd like to start a family soon and Imuran isn't recommended while pregnant, so it's a hard decision what to do next.

 

 


UC since 1995
Total Colitis diagnosed May 2007
75 mg Imuran
3 * 800mg Asacol


quincy
Elite Member


Date Joined May 2003
Total Posts : 29843
   Posted 10/22/2007 11:10 AM (GMT -7)   
Have you stood up and noisily requested rectal meds? It's been suggested, many of us use them and they do work. Please call your doc and get them as soon as possible. As well, do the research and have it handy to give him a copy.

q
*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 4th night)
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals 
~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime
~Natural Factors Multi Digestive Enzymes with supper
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


potty girl
Veteran Member


Date Joined Dec 2006
Total Posts : 835
   Posted 10/22/2007 3:08 PM (GMT -7)   
sometimes you just have to ask. my GI didnt offer rectal meds at all, I didnt know anything about them till this site and quincy. So I ask my doctor and he said oh yes are you not on them yet, I think sometimes they get to busy and dont remember everything. but they worked wonders for me. good luck
Rona

synthroid .088 mg, lowpressor 50 mg x 2, cozaar 25mg x2, imdur 30 mg
nitroquick, proventol, plavix 75 mg, protonix 40 mg x 2, asacal 400mg x 9
carafate 1 gm x 4, zyrtec 10 mg, rhinocort aqua nose spray, fish oil,
potassium.


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10405
   Posted 10/22/2007 5:58 PM (GMT -7)   
Consider writing out what you want to tell the GP before you go. Then, when you feel uncertain about stating your needs during the visit, you can just read your statement to him/her. It's easy to get overwhelmed and intimidated in the doctor's office, especially if you feel your practitioner doesn't really care about you and when you're feeling bad. Having what you want to say or ask written down can help you get it out.
Judy
 
Left-sided UC diagnosed 2001.  Taking Colazal and Imuran, Remicade infusions and moving into remission. Finally off steroids after four years! 
 
Now in remission for almost two years. Remicade has been my wonder drug.
 
"If you spend your time second-guessing your past decisions, you'll never have time to enjoy today."

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