Help me with questions for my doc please.

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Joylu
Regular Member


Date Joined Jan 2008
Total Posts : 362
   Posted 3/18/2009 4:42 PM (GMT -6)   
I have had UC for over 5 years now.  It used to be completely controlable with Immodium.  I went on long trips no problem as long as I remembered my Immodium.
I went into remission last summer, and came out of remission in early fall, and things have changed drastically.  Immodium just delays the inevitable for a few hours, and now I am passing liquid bloody gas.  I canm't make it 3 feet to the bathroom when a bout of this gas comes on, so I have to wear protection in my undies.
No this is the weird part.  I never have D anymore.  I have formed or hard little turds, but with lots of blood.  The urgency is still terrible thoigh, and I won't even dare go to the mall for fear the next bathroom will be too farI am now almost completely housebound.
I notice all of you seem to know where your US is located, and many things I have no clue about.  My doc has never talked to me about these things.  The only thing he ever said was initially..."you have a bit of UC".  He gave me suppositories and enemas and told me that would take care of it, and it did.
He never told me it would/could get worse.  He never told me anything about where it was located/
The next colonoscopy he told me I had a few "precancerous polyps" that he removed.
Again not a word about location of the Uc ect.
I finally found this board, and that's when I realized that the posters here knew so much more about this disease than I did.
I am presently on 3 Asacol 3 times a day, and have many boxes of enemas, which I can no longer hold in.  I tried warming them. I tried using half at a time, and every other suggestion I read here, but it just comes right out(very urgently).  I used to have no problem using them.   I also have Canasa, but they aren't helping either.  My doc tor is a Pred believer, and tried to put me on it soon as my meds quit working, before trying any other thing, but I refused. He wasn't happy with me, and you know what?  If I do have to go on Pred one day, so be it, but not before I try every other thing first.  I already have questionable teeth, arthritis, and insomnia, and am 30 pounds over weight(as you can see my UC has not lost me any weight). 
  So to make a long story longer, can you help me with some questions for my doc to ask him when I go for my colonoscopy on March 31st?
How do I know I haven't got CD?
I can't understand why all your docs gave you so much info about your disease and mine didn't.  I found out more here and on google than he ever told me.
Thank you for your patience.
 

Joylu
Regular Member


Date Joined Jan 2008
Total Posts : 362
   Posted 3/18/2009 4:44 PM (GMT -6)   
so sorry for all the typos....

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 3/18/2009 5:03 PM (GMT -6)   
First, I would read as MUCH as you can about UC. This site is great, the Crohn's and Colitis Foundation of America (www.ccfa.org) has a lot of good information, and just googling "ulcerative colitis" generates a lot of information. I honestly think it's my responsibility to know as much as I can about the possible treatment options, the possible side effects of different meds, etc. The more I know, the more able I am to ask my doctor questions.

That said, I think your doctor kind of sucks. My GI immediately told me that I had pancolitis. He also respects that I do a lot of my own research and reading, and seems to think it's great that I'm so interested in my disease and all.

Definitely ask your doctor how extensive your inflammation is, because if it's very extensive at all, you need to be on oral medication as well. You should also be prepared to talk to him about the different medication options that are out there. The CCFA website has a lot of good info on the different medications that can be used.
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, 40mg of Prednisone (quick taper), Culturelle probiotic, and Zoloft (25 mg).


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16736
   Posted 3/18/2009 7:43 PM (GMT -6)   
I think I would have my records sent to a new GI and start over. Your GI doesn't give you enough personal attention.
Diagnosed with proctitis in March 2007 - Treated with Canasa 2x Daily
Diagnosed with UC December 08 but had symptoms months ago - Treating with Asacol 400mg (9 a day)


Mamas Boys
Veteran Member


Date Joined Oct 2005
Total Posts : 1460
   Posted 3/18/2009 7:47 PM (GMT -6)   
You said that Imodium delays the inevitable rush to bathroom for you.  have you tried taking Imodium first and then using the enema?  That should help delay the inevetibale for a bit and allow the medication to get to work before you feel the urge to expel it.
 
And - as the others have said - I think it's time you got yourself a second opinion and possibly switched GIs.  Mine is always very informative - and at each appointment - half the time is spent "chatting" in his office reviewing all my options and discussing the latest on my condition.
Mamas Boys
Colazal, Azathioprine, Remicade
Culturelle, MultiVitamin, Folic Acid, Viactiv
Status: Remission!!


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 3/18/2009 7:56 PM (GMT -6)   

Ask the doctor (or office) for a written report from the colonoscopy.  He should have all the info - type, tests, etc. on it.  Mine said proctosigmoiditis up left side about 30cm.  This tells you a lot and you can come here and ask if he won't answer - or "google" the info.  Medication options I learned from interent but my GI doc started me on the "usual" treatment and up from there.  I have tried nearly everything before going on prednisone - cannot tolerate mesalamines (5ASA's) so my choices are limited.  I started with 1/2 enema and worked through the urgency and pain for about 30 minutes and retained it all night.  It is hard and painful but works!

If you can get a second opinion, change doctors, that is a good option.  First, you have ask some doctors a lot of questions as they don't come forth without you asking - just the way some are.  I go to a Medicare doctor and they allow only so many minutes per patient so not a lot of time chatting or ?

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008  Cannot tolerate mesalamines, Canasa, etc. Tried, Colozal, steroid enemas, etc. - started working but severe side effects occurred.
Started on prednisone Feb.7, 2009 - tapering to 20 mg. for two more weeks and then down to 15 mg.etc.  Added 6-MP Feb. 28.
Added Anusol suppositories - March 16 - see doc in 3 months. 
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


Joylu
Regular Member


Date Joined Jan 2008
Total Posts : 362
   Posted 3/18/2009 8:00 PM (GMT -6)   
Thank you for the responsese. Yes, I have tried taking Immodium 1 hour before the enema, a suggestion I read here.

I will ask for a copy of the report after my colonoscopy the end of this month. That is a great idea!
I really like my doc, and am comfortable with him, but never knew what he wasn't doing until I started reading here.
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