My first post; new to the forum; seeking your thoughts on my UC situation and current doctor.

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UCmusicguy28
Regular Member


Date Joined Mar 2009
Total Posts : 31
   Posted 3/19/2009 12:59 PM (GMT -6)   
I'm 28 years old; have Ulcerative Colitis since 1998-99.  
I just had a colonoscopy done last month and my doctor said I have small lumps in my colon that to him look troublesome. I never had these lumps before, my colon was just inflamed before. He was concerned so he sent for a biopsy of the lumps to see if cancer or not. He also told me to take Lialda which I told him I don't like it so he said what about Asacol and I really don't like that either but I have to take something so I started the Asacol at 3 pills 4 times a day. The results of the biopsy is benign so I am very thankful and fortunate for that. I just had a visit with my doctor and he says even though the lumps are benign, he is still pressing the issue of removing that portion of my colon (it's only a small portion, maybe 6 inches or so I'd guess). I told him that is a last resort to me and since it's benign, can't we see how it looks again at the next colonoscopy and go from there. I advised I was only taking prednisone every 3 months or so for my flare ups the last few years and now that I started taking the Asacol faithfully daily, maybe the inflammation/lumps will get better. He said we'll take a look at it in 2 months at the colonoscopy but if they are still there he wants to do surgery. He also said to me "you are going to have to get all of your insides removed eventually, your stomach, intestines, and anus, the question is now or later?" I looked at him in shock and thinking is he kidding. I want those organs as long as I can have them. I would never think of removing them now unless life or death which doesn't seem to be the case here. I said to him hopefully my colon will look better. He said if lumps/inflammation still there he is gonna push surgery. I also asked him if he'd ever seen the little lumps like this before and he said "no, this is weird" even though it's not cancer now, it may turn in to it later and usually does". So basically, I have an inflamed portion of my colon with small lumps that are not cancerous and my doctor never really saw this before or knows what exactly the lumps are but he wants to remove that portion of my colon and eventually all of my insides. I'm definitely gonna see someone else for a second opionion. This all sounds drastic to me especially since no cancer is found. On a side note, this doctor didn't really want me to take anything but Lialda but I had to ask a few times to switch to Asacol which I'm not fond of either. Noticing more hair thinning and a bit receding the last month I am taking it. I may want to try Sulfasalazine again. If I have to take something, might as well find something I like the best. What are your thoughts on this situation and have any of you had this happen? I just hope the lumps are better or gone in 2 months. Thanks to all who read this and sorry for making it lengthy.

Post Edited (UCmusicguy28) : 3/19/2009 2:08:55 PM (GMT-6)


glamourgirl
Regular Member


Date Joined Apr 2008
Total Posts : 460
   Posted 3/19/2009 2:26 PM (GMT -6)   
I would find a new doctor! It's very common to have polyps with UC, it doesn't mean you have to have your colon removed at this time if they're benign. What the hell is he talking about removing your stomach too? I would work on finding what meds help with your flare ups and go from there. I would be shocked if your polyps are gone in just two short months but I guess it could happen.
Female, Age 38
Diagnosed w/c.diff 7/02 when pregnant w/1st and only child during 2nd trimester(wasn't on antibiotics)
C.diff flare within weeks of delivering baby 1/03, Diagnosed with UC 2/03
Current Meds:
LDN - 2/17/09 1.5 mg., increased to 3 mg. 3/3/09
Ferrex Forte
Acidophillus, Sacchromyces Boulardii, Oil of Oregano


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 3/19/2009 4:38 PM (GMT -6)   
You might want to get a second opinion. If your "bumps" are precancerous, they merit really close watching.

It the doc really told you that you will have to have your stomach removed, you def. need a new doctor. They remove the colon for cancer, uncontrolled UC or certain other colon diseases. They sometimes remove sections of the small intestine or stomach in people with Crohn's, but I've never heard of them removing the entire digestive tract.

And keep taking the Asacol. It has a preventive effect for colon cancer.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
"My life is an ongoing medical adventure"
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5165
   Posted 3/19/2009 4:49 PM (GMT -6)   
"Bumps" in the colon is a very unmedical explanation coming from a doctor. Does he mean polyps, pseudopolyps, granulomas, or what? He sounds like an alarmist creep! I think you definitely need to change to a gastroenterologist who has experience treating IBD patients. In the meantime, you can look for better information on UC at ccfa.org and on Salix Pharmaceuticals patient newsletter (archive) online. Best wishes for you to get better help soon! / Old Hat (30 yrs with left-sided UC ... [etc.])

Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 3/19/2009 5:49 PM (GMT -6)   
What your doctor has told you doesn't make sense to me, either.
I agree, get evaluated by another doctor.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated all wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion), trying Curamin. 
Flaring, seasonal? or supplements too harsh? Back on prednisone, down to 10 mg. Waiting for insurance decison on Humira... 


UCmusicguy28
Regular Member


Date Joined Mar 2009
Total Posts : 31
   Posted 3/19/2009 6:17 PM (GMT -6)   
Old Hat: actually, that's exactly what I see him as - "alarmist creep". I was saying things like he's jumping the gun and too drastic but alarmist creep probably suits better. I'm definitely gonna see someone else. The words he used repeatedly to describe my lumps were just "small lumps" and one time during our discussion he said tumors. I'm kind of surprised he really didn't know what they are since he took a biopsi. He said he never saw this and this is quote "weird". I was reading up online and the thing that sounded closest to me were polyps caused by severe inflammation. I was thinking this is because I haven't taken any medicine regularly for years now. Only Prednisone every 3 months for one week at decreasing dosage for flare ups. I'm thinking since now I'm faithfully taking Asacol, the lumps and inflammation will decrease or go away.

Judilyn: I agree it is something to watch closely. I am going to keep on it. I was literally shocked when he said "eventually you'll have to have your colon, intestines, and anus removed - question is now or later?" He may just be surgery or snip happy too. He seems very odd in the way he explains things and seems like a it's this way (his way) approach. The Asacol isn't as bad as the Lialda it seems for me but I do feel low energy, some head pressure, hair thinning/receding a little, and actually some impotence so I think I may have to try something else. I was thinking sulfasalazine. I know I should probably be taking something steady and long term but I just want to find the med I'm most happy with - and I should, I'm entitled right? If I told my current doctor that he'd probably say well, Lialda or Asacol. He really has his mind set on Lialda for some reason. I need to find a doc that will know what the tiny little lumps are and that will work with me as far as long term meds goes. I'm searching now and hopefully I'll be in to a new doc soon. Thanks for everyones time for reading and replying. I'm sure I'll be checking in here more. Great info. on here for us unfortunate medical sufferers.
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