Hi All! My name is Ross and I am a 57 year old male that has had UC since 1998 with no flareups until June, 2008.

After my most recent colonoscopy (September, 2019) my GI called (his nurse) and said the samples were benign and during my follow up with my GI he told  me he was giving me massive probiotics to try and reduce and possibly get rid of the inflammation that was present. If it didn't work he said there were other meds we could try and hold off surgery for futher down the road.

About a week after my last consult with me GI, his nurse called and told me that I needed to consult with a surgeon and gave me his number. During the consult, the surgeon was able to speak to my GI and told me that one of the samples was precancer. I was floored and pissed. The surgeon said that both he and the GI would rerun the pathology to be sure. 

On Tuesday (Oct. 29, 2019) surgeon called and said it was still positive and the he recommended surgery. I am in the process of getting a 2nd and possibly a 3rd opinion. Any recommendations of who to contact....I live in Fairfield, CT.

If it turns out that I do indeed need surgery my biggest fear and or concern of going with J pouch is how much control does one have.....I fly to Brazil once a year and I also am very passionate about American Rev War reenacting and it would devastate me if I had to give that up.....

Thanks for any advice...... 

(I didn't know where to post this so I posted it in General Discussion and here)

Original Post

Hi!  I also, was dx with UC in 98.  It almost killed me I had 54 polyps  but non cancerous.   Miracle!!  It was the inflammation so bad throughout the entire  colon.  I was on  prednisone for months & lived with UC for 13 yrs on 13 pills a day of sulphazidin.  It worked thanks to Temple  Hospital  in Philadelphia  & my team of drs.  Never thought I would  have another relapse like the first onset.   It was fierce  & my dr said I was so bad the colon had to b removed & once again I might not make it.   No meds worked  anymore.   I did the 3 part surgery @ Temple Hospital  with the head GI surgeon.  I trusted completely.   I have the J pouch since 2013 & I'm  63.  

The Question can u travel & live a normal  life.   It will be your new normal.  Everyone is different, but for me I can't  travel far.  This is life changing.  You have to come up with a plan for diet, exercise, & bathroom a biggie!!  Out put goes hand & hand with what u eat.  It's  a tough surgery and long recovery.   Too much to go into  but be prepared & do your homework  & find not only a good surgeon  but be sure the hospital is qualified  for this. Honestly, I would have never gone this route if there was another option.  Best of Luck

 

I made 4 trips to Eastern Europe, skied in the Rockies and participated in equestrian competitions with a J pouch.  Although I did have a few problem episodes, for the most part things went well.  If a J pouch does not provide acceptable results, you can always get a K pouch or BCIR, procedures that do not require having an external bag.  There is lots of information in the internet about these procedures and I suggest that you do your research before making a decision.

Hi Ross-

I am about the same age as you, and also live in CT (grew up in Fairfield County and now live in New Haven County). I actually went to high school in Fairfield and later lived there until moving to New Haven County the last 20 years.

What you are referring to as “precancer” is actually dysplasia. It’s also the reason I had surgery although it was low grade dysplasia.

For surgery, I would suggest getting an opinion from Dr. Reddy at Yale. I have heard very good things about him. My own surgical group was Manhattan Surgical Associates and Dr. Steven Gorfine in NYC. They are excellent colorectal surgeons.

I had surgery in 1992 and have lived 27 pretty good years with a J Pouch, although it’s not been a medication or problem free 27 years. Surgery gets rid of your problem issue at the moment which is inflammation in your colon, but it doesn’t get rid of the underlying autoimmune disorder that caused the issue in the first place. In the future it can manifest as Crohn’s and it did in my case, although the inflammation in my J Pouch has been more treatable than what I had in my colon. So I traded up in diseases, so to speak. By the time I had the colon removed, it was almost dissolved from inflammation and did dissolve as my surgeon took it out from what he later told me. Dysplasia is a pretty good sign that things are headed in the wrong direction in terms of the treatment of your UC.

I doubt you will have to give up your hobbies unless you have a bad surgical result. However I am skeptical about relying on probiotics to make your current situation better. You don’t want to get colon cancer and that can happen quickly if you are using ineffective treatments.

Has Remicade been discussed or attempted? Would be much more potentially effective than Probiotics.

Good luck to you.

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