Just got back from a colonscopy

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UMDTerp2001
Regular Member


Date Joined Sep 2006
Total Posts : 246
   Posted 4/29/2008 3:59 PM (GMT -6)   
I had a colonoscopy today and this really brought it home to me that I have severe UC.  I got sick a little over two years ago and at that time the colonoscopy wasn't completed or started much for that matter so I didnt have any visuals of the disease.  Well, after seeing the photos of severe uc throughout my colon, it's pretty disturbing.  My GI was very adamant about me starting Remicade and said I should start 30mg of Prednisone until I see him in two weeks.  I have been in a nice remission for over a year now and so this is all a shock, sort of...He also talked about potential surgery down the line as they were several pseudopolyps, basically the intestines look liked chopped up white grown beef.  So I see now that surgery is a big likelihood at sometime in my life as im only 30 and the colon looks very bad.  I want to just keep taking the colozal and stay in remission without the remi or pred as life is fairly good with little or no pain, no side effects, I just don't feel ready for that step but I have a hard time listening to the doctors anyway.  My entire colon is diseased so is there a risk to reject the remi and see if I can hold out on just Colazal.  I know it works but I dont like the side effects.  Id almost consider surgery over the big gun meds as im fairly young and dont want to face the potential side effects.  Any input is greatly appreciated.
 
 
__________________________________________________________________________________
- 29 y/o male residing in Northern VA
- Currently in remission
- Indeterminate UC diagnosis April, 2006 - symptoms came on sudden and resulted in year long battle to get things under control - still testing for Crohns
- Approx 8 mths into ordeal a very painful fistula formed - now stable but not completely healed
- Completed 3rd pred taper on 4/13/07 - tapered from early Jan 07 -- mid-April 07 after being hospitalized from a bad flare with anemia & joint pain
- During Apr-May 07 suffered through 2 mth long migraine
- Joint pain has mostly cleared up but does flare up now and then 
- 4 Colazal/day,  daily multivitamin, Fish oil & Primal Defense Probiotics 2x/day
 
 


momhatesuc
Regular Member


Date Joined Sep 2006
Total Posts : 78
   Posted 4/29/2008 4:07 PM (GMT -6)   
I'm sorry to hear the bad news. Do you mind my asking what dr you see? I also live in NoVa and actually am looking for a new GI. I'm also a bit confused. He wants you on remicade and pred even though you have been experiencing no symptoms?
Leslie, 30~ left-sided UC diagnosed in 1999
9 asacol x day
nightly rowasa (as needed)
multi-vitamin, calcium


UMDTerp2001
Regular Member


Date Joined Sep 2006
Total Posts : 246
   Posted 4/29/2008 6:01 PM (GMT -6)   
Hi momhatesuc - I just started seeing Dr. Michael Garone a month or so ago...so far so good. He seems to really care and seems to listen better than some GIs. He is much better than the first two doctors I had. I would recommend him. From what I can tell he wants me on the stronger meds because I have severe uc throughout my colon and I suppose he wants it contained and not to get any worse. I was surprised to see how bad the pictures looked. I would have expected more pain given what I saw from the colonscopy this morning. I thought I was doing good with the colazal. I dont feel ready to go on the remi and i'm definitely not running to my medicine cabinet to start taking prednisone when i'm feeling good at the moment. I feel like it's inevitable i'm probably going to have to try something stronger though given what my colon looks like.
 
 
__________________________________________________________________________________
- 29 y/o male residing in Northern VA
- Currently in remission
- Indeterminate UC diagnosis April, 2006 - symptoms came on sudden and resulted in year long battle to get things under control - still testing for Crohns
- Approx 8 mths into ordeal a very painful fistula formed - now stable but not completely healed
- Completed 3rd pred taper on 4/13/07 - tapered from early Jan 07 -- mid-April 07 after being hospitalized from a bad flare with anemia & joint pain
- During Apr-May 07 suffered through 2 mth long migraine
- Joint pain has mostly cleared up but does flare up now and then 
- 4 Colazal/day,  daily multivitamin, Fish oil & Primal Defense Probiotics 2x/day
 
 


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 4/29/2008 7:34 PM (GMT -6)   
I was very frightened to try the Remicade at first. My one inch deep fistula closed into 1/4 inch within 3 months on Remicade! I did have some reactions later on, which I blame on getting too high a dose and not paying attention to the warning signs. I probably could have stayed on it if I added Prednisone for the week of the infusions, and I may do that if for some reason Humira doesn't work out for me. I understand feeling uneasy about the Remicade. But after a while on it, I would start looking forward to my infusion days because I would feel so much better after. If your colonoscopy revealed hamburgerish colon, then it sounds pretty severe. I think that Remicade and Humira are amazing and my opinion is that everyone should give them a chance before surgery. There are serious risks, I will not deny that. I felt defeated when I had to start Remicade. I think I was depressed over it. Now I wish I would have started it sooner. Sorry to hear what a rough time you are having. PS- the Remicade may help with your joint pains as well.
Diagnosed with Left-sided UC in 1995 at age 15, Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Aloe Juice, Canasa, Enotcort, Colazol, Anamantle, Remicade, etc... had 1 inch deep rectal ulcer 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Clorazepate, Lomotil,  Tylenol pm, Lyrica started 1/17/08,  Humira started 4/4/08


UMDTerp2001
Regular Member


Date Joined Sep 2006
Total Posts : 246
   Posted 4/30/2008 7:47 AM (GMT -6)   
Thanks Princesscolon! I will definitely go on the Remicade before surgery, but just from the pictures taken it has hit home that my colon is very diseased. I'll have to research all of this stuff and meet with my GI to figure out the best plan. Good luck with the Humira treatment.
 
 
__________________________________________________________________________________
- 29 y/o male residing in Northern VA
- Currently in remission
- Indeterminate UC diagnosis April, 2006 - symptoms came on sudden and resulted in year long battle to get things under control - still testing for Crohns
- Approx 8 mths into ordeal a very painful fistula formed - now stable but not completely healed
- Completed 3rd pred taper on 4/13/07 - tapered from early Jan 07 -- mid-April 07 after being hospitalized from a bad flare with anemia & joint pain
- During Apr-May 07 suffered through 2 mth long migraine
- Joint pain has mostly cleared up but does flare up now and then 
- 4 Colazal/day,  daily multivitamin, Fish oil & Primal Defense Probiotics 2x/day
 
 


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 4/30/2008 8:02 AM (GMT -6)   
HI there! My colonoscopy showed the same thing, literally hundreds of pseudopolyps...which in and of themselves are no big deal. The problem comes with cancer detection, as it's impossible to remove all the polyps. That's why your GI is talking surgery- mine did too. It's not a given though- I figure if I get yearly colonoscopies, & they randomly do biopsies on the polyps, then I'm covering my bases enough for me. If the thought of colon cancer really freaks you out, then yes, remove the colon for peace of mind. It is definitely a sobering shock to see the shape youtr colon is in- my GI also used the "ground beef" analogy, & told me it looked my colon had been shot up with a machine gun. There was "only" about 10" of active disease, though. The thing about your post which confuses me is why your GI would want you on pred or Remicade if you are having little to no symptoms- neither of those drugs will do a darn thing for the polyps. If your symptoms are manageable, not impacting oh your day to day life, then I personally would not opt to go on either of the drugs. Yeah, I've been on pred bunches of times, it sucks. And I'm currently on a high dose of Remicade, which works ok for now. But I started the Remicade when I was very, very ill, & I couldn't wait to try it as nothing was helping. Maybe get a 2nd opinion about the need for these meds based on your current symptoms. Or at least, sit down with your GI & have a good talk about it. Surgery isn't a given- I'm 37, I know how you feel. I've had surgery scheduled twice & cancelled it both times.

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Culturelle
 
 
 
 


UMDTerp2001
Regular Member


Date Joined Sep 2006
Total Posts : 246
   Posted 4/30/2008 9:16 AM (GMT -6)   
Thanks Eva Lou! You've provided a lot of good insight. Given that I am not having any of the typical UC symptoms, i'm leaning on sitting tight with just the colazal as i've been doing for the past year. Considering the risk of colon cancer, it looks inevitable that it will be taken out some day but not looking to do that either right now given i'm in good shape. I'll have to find out from my GI why he wants me on Remi if im in remission with just the 5ASA. I have an appt in two weeks. Thanks!
 
 
__________________________________________________________________________________
- 29 y/o male residing in Northern VA
- Currently in remission
- Indeterminate UC diagnosis April, 2006 - symptoms came on sudden and resulted in year long battle to get things under control - still testing for Crohns
- Approx 8 mths into ordeal a very painful fistula formed - now stable but not completely healed
- Completed 3rd pred taper on 4/13/07 - tapered from early Jan 07 -- mid-April 07 after being hospitalized from a bad flare with anemia & joint pain
- During Apr-May 07 suffered through 2 mth long migraine
- Joint pain has mostly cleared up but does flare up now and then 
- 4 Colazal/day,  daily multivitamin, Fish oil & Primal Defense Probiotics 2x/day
 
 

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