Doctor misleaded me...great.

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Sibby
Veteran Member


Date Joined Apr 2010
Total Posts : 1160
   Posted 9/21/2012 5:05 PM (GMT -6)   
So I'm planning on finding a new GI in the GTA.

Since my diagnosis he stated that I had left sided UC. Today he said that I had pancolitis all along. Thankfully, there is no visible inflammation anywhere in my colon. And he assumes that my irregularity which last a few weeks was simply caused by a stomach bug.

However he doesn't want me to go on Pentasa yet until I start seeing symptoms. Which I find irresponsible. I don't need my UC not to respond to treatment, or get worse. I also have to wait until October 29-30 (can't remember which day) to find out the biopsy results.

I feel lied to. I feel more angry than anything else. shakehead

So I'll be contacting my GP to find a new doctor asap.

sherbear46
Forum Moderator


Date Joined Jun 2011
Total Posts : 2512
   Posted 9/21/2012 6:01 PM (GMT -6)   
Seem very odd to say the least. And why in God's name is it going to take until the end of October to get biopsy results? I would be getting a new GI. Make sure you get copies of everything.
Co-Moderator UC

Sheri-39 years old

Diagnosed UC/IBS April 2009-suffered over a year prior to diagnosis.

Currently taking Lialda 2 tabs in am, Protonix 40mg every day, Allegra, Zyrtec, Probiotics, Vitamin D3, Calcium, Zocor and Generic Rowasa enema twice a week.

Currently in Remission since June 2011.

garylouisville
Veteran Member


Date Joined Aug 2012
Total Posts : 4958
   Posted 9/21/2012 6:05 PM (GMT -6)   
Time for a new doc. With my first autoimmune disease I fired two docs and am on my third. I wound up curing myself but I like my last doc, who I don't have to see anymore.
Asacol 400mgs 2 pills X 4; VSL#3 112.5mgs 2 pills X 4; ; DGL 400mgs 1 pill X 3; Monolaurin 300mgs 1 pill X 3; Zymactive 1 pill X 3; Vitamin D 5000 ius 1 pill X 2

Discontinued: Prescription - Glycopyrrolate; Natural - enteric peppermint oil, Inflaguard (Boswellia), Pepto Bismol, Omega 3 fish oil, Slippery Elm, Imodium, Beano, Lactaid

soystud
Veteran Member


Date Joined Jan 2004
Total Posts : 4238
   Posted 9/21/2012 6:17 PM (GMT -6)   
uh gary, you be walkin on thin ice there claiming you are cured - according to undisclosed experts, there is no such thing - the word cure has been obliterated from the official uc dictionary !

you've been warned !
diagnosed with pancolitis december 21, 2003
currently taking: -- Astaxanthin, Ultimate Flora Critical Care, Natures Way Reuteri, Wild Harvest Inflamma Shield, Multi Vit. -
No Gluten, Limited Rice, Corn, Dairy & Sugar - -
1 x 800mg asacol/day
Lots of H2O, exercise as much as possible & enjoy this great life that God has blessed me with -

dontscopeme
Regular Member


Date Joined Jun 2012
Total Posts : 278
   Posted 9/21/2012 6:29 PM (GMT -6)   
Where do you go in the gta? i go to mt sinai and my gi there is amazing. I used to go to scope clinic in brampton, so much wasted time there!

Sibby
Veteran Member


Date Joined Apr 2010
Total Posts : 1160
   Posted 9/21/2012 7:27 PM (GMT -6)   
East area - in the Durham region, if you know where that is, dont. I've heard of Mount Sinai as a good place for treatment and surgery.
I'm thinking of going there to see a doc, possibly finding a good reference and then take it from there.


Sheri, it'll take a week for the results, but more then a month to see him. And they don't like to release results over the phone. And I'll definitely get copies. Last thing I need is for him to hijack my reports.
23 · F · Ont., Canada
Inactive left-sided UC · Last scope: 0% inflammation
Asthma, lactose intolerant, IBS, migraine headaches
Salofalk - Sx worse, Imuran - wbc too low
LDN, 1mg (soon) · Alesse 21 · Folic acid, 5mg · Inderal, 10mg · Multiple vitamins · Culturelle · supplements soon
Temp: Cipralex, Doxepin
Paleo diet · modified with brown rice, potatoes

garylouisville
Veteran Member


Date Joined Aug 2012
Total Posts : 4958
   Posted 9/21/2012 7:29 PM (GMT -6)   
Soy, I wasn't talking about UC. UC is my second autoimmune disease. You are right though. I have been in a med free 13 year remission from my first autoimmune disease. I achieved this myself and took the doctors along for the ride. They had no idea how to fix me. I had to do it myself and that's the road I'm going down with UC. I am the doctor and the real doctors are going to have to listen to me and my ideas, for the most part anyway. If my doc can't live with that then it is on to the next doc.
Asacol 400mgs 2 pills X 4; VSL#3 112.5mgs 2 pills X 4; ; DGL 400mgs 1 pill X 3; Monolaurin 300mgs 1 pill X 3; Zymactive 1 pill X 3; Vitamin D 5000 ius 1 pill X 2

Discontinued: Prescription - Glycopyrrolate; Natural - enteric peppermint oil, Inflaguard (Boswellia), Pepto Bismol, Omega 3 fish oil, Slippery Elm, Imodium, Beano, Lactaid

soystud
Veteran Member


Date Joined Jan 2004
Total Posts : 4238
   Posted 9/21/2012 7:39 PM (GMT -6)   
awesome gary -
diagnosed with pancolitis december 21, 2003
currently taking: -- Astaxanthin, Ultimate Flora Critical Care, Natures Way Reuteri, Wild Harvest Inflamma Shield, Multi Vit. -
No Gluten, Limited Rice, Corn, Dairy & Sugar - -
1 x 800mg asacol/day
Lots of H2O, exercise as much as possible & enjoy this great life that God has blessed me with -

ActiveUCer
Veteran Member


Date Joined Jul 2012
Total Posts : 1676
   Posted 9/21/2012 8:36 PM (GMT -6)   
Over a month for biopsy results? That's so not cool. They could at least have you meet with a nurse just to cover the results.
http://activeguts.wordpress.com/

Colectomy with end ileostomy August 30th, 2012 - jpouch sometime
Sitting at 20 mgs pred and dropping!

UC (refractory) sufferer diagnosed July 2011
One never ending flare
enemas, suppositories, Asacol, Lialda, and Colazal = worthless for me; Imuran/Azathioprine = bad liver and pancreas values; Remicade = Not very helpful; Paleo not helpful

Sibby
Veteran Member


Date Joined Apr 2010
Total Posts : 1160
   Posted 9/22/2012 11:47 AM (GMT -6)   
I have a guard dog (secretary), no nurse. The new one is no better than the last. She over booked the scopes yesterday, and I didn't get out until 4pm. I arrived at 11am.
23 · F · Ont., Canada
Inactive left-sided UC · Last scope: 0% inflammation
Asthma, lactose intolerant, IBS, migraine headaches
Salofalk - Sx worse, Imuran - wbc too low
LDN, 1mg (soon) · Alesse 21 · Folic acid, 5mg · Inderal, 10mg · Multiple vitamins · Culturelle · supplements soon
Temp: Cipralex, Doxepin
Paleo diet · modified with brown rice, potatoes

quincy
Elite Member


Date Joined May 2003
Total Posts : 25142
   Posted 9/22/2012 12:40 PM (GMT -6)   
Do you have copie of your original c-scope? It would/should have stated inflammation throughout.
If you have limited inflammation, he might have stated it as what it was at that time....?

Regarding oral 5ASA....there's absolutely NO reason you shouldn't be on it...for that reason alone, you should seek another doctor.

It's great you're doing so well...you do need to make a list of questions for the doc and get to why he's stating things as such.

q
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Airomir (asthma);Effexor XR 37.5 (depression)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care+Primadophilus Reuteri capsules @ bedtime)
~Metamucil capsules 6 twice daily with meals; Vitamin D 4500 IU
~URSO for PBC(or PSC?) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS" worth it !!!

tournevice
Veteran Member


Date Joined Mar 2008
Total Posts : 713
   Posted 9/22/2012 2:18 PM (GMT -6)   
Sibby that's weird he doesn't want to prescribe pentasa. I tried pentasa in the past and my colitis is only the first 30cm of the rectum. And Pentasa was prescribed twice by a GP.

Technically you could be prescribe colitis meds from a gp. You could go cheeky on that one and Pentasa has so little side effects.
Probably your GI doesn't want to start a new treatment until he gets the biopsy results and any drugs can take a while to settle and be effective. However late october sounds ridiculous. I'm in England now and its faster than this! And god knows they are slow here ahah

At the end of the day you get 3 options
1: ask your gp the meds
2: when you feel sick go to the emergency directly and say you GI can't see you before end of october
3: convince your GI or change GI

I remember in Canada somtimes you need to exagerate... to be heard.

Sibby
Veteran Member


Date Joined Apr 2010
Total Posts : 1160
   Posted 9/22/2012 3:54 PM (GMT -6)   
Hello my pretty!

I don't understand my GI any longer. I'm not risking it until I see symptoms. I'll try the Pentasa asap to determine if I am 5asa intolerant. If not, I'll phone in to get the rec meds, or probably another one. I hear the Pentasa rec's are horrid. Unless it's another one aha.

I'm thinking of asking my gp to refer me to Mt Sinai. It's close - well, close enough and I hear great things about them. Perhaps they can refer me to another GI in the area.

My gp helps me more than my GI. He prescribed me the ldn.


btw, how are you doing? Flare over, or is it still kicking ya in the butt?
23 · F · Ont., Canada
Inactive left-sided UC · Last scope: 0% inflammation
Asthma, lactose intolerant, IBS, migraine headaches
Salofalk - Sx worse, Imuran - wbc too low
LDN, 1mg (soon) · Alesse 21 · Folic acid, 5mg · Inderal, 10mg · Multiple vitamins · Culturelle · supplements soon
Temp: Cipralex, Doxepin
Paleo diet · modified with brown rice, potatoes

tournevice
Veteran Member


Date Joined Mar 2008
Total Posts : 713
   Posted 9/22/2012 4:07 PM (GMT -6)   
How do you know I'm pretty? ah

Well yes good gp's are out there and lucky we have uc cause no drug addicts use our meds to get high so gp's know it's really for us.

I mean surely rectal meds can stop you from going worst, at least if you don't get better. It's a bit like a diet: before losing weight start by not gaining some. mmm ice cream...not

How long is it in Ontario to see a new Gi? Montreal was about 2-3 months unless emergency. I that time just rely on your gp. He'll prescribe you what you need.

I'm fine thanks for asking we are finally moving next Saturday in a nicer area in a house that resemble more the Canadian space. Got my spouse visa today after 7 months of applying (usually take 4-6 week) and after 6 months on another visa not working.
So hungry for money, for friends and fame.
As for the mini flare well it went down to 1-2 bms a day which is fine. I never had the explosive flare everyone talks about but could surely fly back to Canada just on the fuel I expel each day.

Have been bad lately talking some wheat and dairies and now some seriously aged cheddar in looking in my direction now.

How's the ldn working?

Sibby
Veteran Member


Date Joined Apr 2010
Total Posts : 1160
   Posted 9/22/2012 6:05 PM (GMT -6)   
:) It's a talent.

That's why I love my gp. I don't have to explain in great detail why I'm asking for a prescription. He knows me enough to know I'm not an addict. ahaha.

Is the new place open concept? Not a million tiny spaces and small door frames?

hahaha. I haven't gotten it yet. I wanted to get more information and find a local pharmacy. That pharmacy doesn't know what they are doing, so I'm going to get it at a Toronto one.
23 · F · Ont., Canada
Inactive left-sided UC · Last scope: 0% inflammation
Asthma, lactose intolerant, IBS, migraine headaches
Salofalk - Sx worse, Imuran - wbc too low
LDN, 1mg (soon) · Alesse 21 · Folic acid, 5mg · Inderal, 10mg · Multiple vitamins · Culturelle · supplements soon
Temp: Cipralex, Doxepin
Paleo diet · modified with brown rice, potatoes
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