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pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 6/29/2009 9:06 PM (GMT -6)   
I see everyone talking about them, but my doctor has never mentioned them. Should this be something I should be taking? Should I ask him tomorrow at my appointment?
I've only been on Asacol and Prednisone and now Remicade. He told me there were no other reasonable options besides surgery if the Remicade doesn't work (which I thought I was improving, but I am not...it was only for a couple of days that I thought I was getting better). He said he didn't want me to take the 6MPs because it would take too long to work and I was too sick to wait and because of the side effects and needing a lot of blood work and stuff frequently.

Also, I only had the flex sig, so he didn't know how far up the inflammation went and that was done in November. I would think I should have a full colonoscopy to know what is really going on, but he has not suggested it. Does it really matter what type of UC I have? Should I request a colonoscopy?
26 year old female
Diagnosed with unspecified UC 11/08 by flex. sig. as I was pregnant at the time and did not want to be put under for a colonoscopy
Breastfeeding my baby boy (born 4/8/09)
20 mg Prednisone AM, 20 mg PM (tapering from 60mg a day)
Started Remicade 6/11/09
Was on Asacol (2400mg or 3600mg a day) for 6 months with no success


BigPanda
Regular Member


Date Joined Mar 2009
Total Posts : 54
   Posted 6/29/2009 9:11 PM (GMT -6)   
Using Rectal meds or not depends on where the colitis is. Why not ask your GI tomorrow.
I am not a pro, but I think you are on Remicade way too fast (just my opinion).
Dx Ulcerative protitis Oct. 08 by colonoscopy
Main problem is rectum bleeding......
Canasa 1000mg / night immediately
 
Jan. 09, Asacol  3X2pill / day, off Canasa...... Began to bleed a week later
Back to Canasa 1000mg/night
 
Seems in remission now......
 
Thinking about taking some probiotic.......
 


pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 6/29/2009 9:16 PM (GMT -6)   
BigPanda said...
Using Rectal meds or not depends on where the colitis is. Why not ask your GI tomorrow.
I am not a pro, but I think you are on Remicade way too fast (just my opinion).


I was really just listening to my doctor since he told me there was nothing else to try. I was naive, I guess...I was diagnosed and just thought "great, now I can get medicine and everything will be better, " but, of course, that was not the case.
I have been in a flare for nearly 2 years now (I was only diagnosed in November but I spent over a year before that without medical insurance trying to get help in ERs and just being told I had salmonella or something and being given antibiotics or being told they had no idea what was wrong, hospitalizing me and giving me IV fluids and potassium and then letting me go,,,and then once I was pregnant from August 2008-November, doctors wouldn't see me because I was pregnant or told me I was just sick because I was pregnant), and even high doses of prednisone haven't worked to give me much relief at all.

He really didn't discuss the sigmoidoscopy results with me. I mean, I was there and awake and watching, and you could see inflammation immediately when it was inserted and as far up as it went, but all he said was "yep, you have ulcerative colitis"
26 year old female
Diagnosed with unspecified UC 11/08 by flex. sig. as I was pregnant at the time and did not want to be put under for a colonoscopy
Breastfeeding my baby boy (born 4/8/09)
20 mg Prednisone AM, 20 mg PM (tapering from 60mg a day)
Started Remicade 6/11/09
Was on Asacol (2400mg or 3600mg a day) for 6 months with no success

Post Edited (pam222) : 6/29/2009 8:23:35 PM (GMT-6)


Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2105
   Posted 6/29/2009 10:13 PM (GMT -6)   
Some docs just don't manage their patients very well. This is a great case of that.
Proctitis DX 1999, Pancolitis DX 2008
Golimumab study (100mg every 4 weeks)
L-Glutamine 5000 mg + 600 mg pyridoxal alpha-ketoglutarate
Probiotis/VitD3 5000IU+Ca/1000mg DHA


julee70
Regular Member


Date Joined Oct 2007
Total Posts : 486
   Posted 6/29/2009 10:40 PM (GMT -6)   
Pam,
It sounds like you could use a second opinion from another doctor... if you don't mind me saying so. It's possible that your doctor is doing everything perfectly, but he should explain it so that you really know what is going on. For me -- and I have been to top doctors in New York City -- I got several opinions throughout the years. They nearly always agreed with each other, which made me feel that I was doing the right thing! So it is good for peace of mind too.

Rectal meds can be a life saver. Without them, I flare. With them, I can get back into remission or at least keep myself from getting really bad. There are a bunch of different ones that people here have written about at length.

You can get a lot of great info for free through the Crohn's and Colitis Foundation of America. ccfa.org
There is a section on all types of meds and they have a free hotline you can call or you can email them. I highly recommend it!
-------
UC for the last ten years
Current Meds: 6MP since 2006, Lialda, Asacol foam, Lomotil
Past Meds: You name it; I've tried it. (Asacol, Colazol, Pentasa, DiPentum, Rowasa, Canasa, Cortenema, sulfasalazine, Cortifoam)
Alternative treatments I have had success with: Acupuncture, Hypnotherapy

Post Edited (julee70) : 6/30/2009 6:11:38 PM (GMT-6)


quincy
Elite Member


Date Joined May 2003
Total Posts : 30999
   Posted 6/30/2009 1:12 AM (GMT -6)   
It doesn't matter how high up one's inflammation goes...rectal meds are meant to treat the lower colon..oral meds treat above the sigmoid/rectum.

both ends....

Yes, you should have a c-scope soon I would think....by the end of year one anyway.

You can ask the doc for a copy of the pathology report.

quincy
*Heather* Status: maintenance Asacol 6 daily + Salofalk enemas every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 6/30/2009 1:48 AM (GMT -6)   
Thanks
It's just frustrating, because, like I said, I had already been to a couple of doctors, so when this one finally listened to me and was at least willing to do SOMETHING to make a diagnosis, I trusted him.
26 year old female
Diagnosed with unspecified UC 11/08 by flex. sig. as I was pregnant at the time and did not want to be put under for a colonoscopy
Breastfeeding my baby boy (born 4/8/09)
20 mg Prednisone AM, 20 mg PM (tapering from 60mg a day)
Started Remicade 6/11/09
Was on Asacol (2400mg or 3600mg a day) for 6 months with no success


jars05
Regular Member


Date Joined May 2003
Total Posts : 297
   Posted 6/30/2009 1:55 AM (GMT -6)   
I have left-sided colitis and rectal meds after one week nightly knock the blood right out. I love them. I highly recommend you ask your doctor about them.
Age: 31
Location: Missouri
Diagnosed with UC in 1997.
Medications: Mesalamine rectal meds, back on 100 mg Azathioprine
 
 
 


pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 6/30/2009 9:27 AM (GMT -6)   
Well, I am back from seeing the doctor. He did not have me on many medications before because he wanted to limit what I was on while pregnant. He was very surprised that I am still going 10-15 times a day on Remicade and didn't seem very hopeful. He prescribed me an anti-spasmodic because I have been having more urgency, which never used to be a problem for me. However, after asking if I was breastfeeding, he still prescribed me a medication that when I just looked it up says "can cause breathing problems or death in infants under 6 months. Do not take while breastfeeding." Wow.

I had my blood sugar tested last week because I have been peeing every hour and felt it was high. It was 154. Last time I had it checked before the high doses of prednisone, it was 98, so that is not good. He is having it checked (and a CBC) after I get to 20mg of prednisone. He is having me do 3-4 days at every 5 mg to get to 20 quickly.

He does want to do a colonoscopy, but wants to wait a few months to see if I am doing better with the Remicade so that when he does the colonoscopy, he can tell if I am really healing. If I am not seeing improvement soon, he wants to do it soon to see if there is something else going on.
26 year old female
Diagnosed with unspecified UC 11/08 by flex. sig. as I was pregnant at the time and did not want to be put under for a colonoscopy
Breastfeeding my baby boy (born 4/8/09)
20 mg Prednisone AM, 20 mg PM (tapering from 60mg a day)
Started Remicade 6/11/09
Was on Asacol (2400mg or 3600mg a day) for 6 months with no success

Post Edited (pam222) : 6/30/2009 10:35:50 AM (GMT-6)

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