HealingWell
Search Close Search
☰

2nd opinion report

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 1/24/2011 4:28 PM (GMT 0)

adenomatous polyp with tubulovillous architecture and low-grade dysplasia.

Within this biopsy are fragments of adjacent rectal mucosa demonstrating

chronic active colitis without evidence of dysplasia. Sections of the

'borders of the polyp' biopsies also demonstrate chronic active colitis

with no evidence of dysplasia. Due to the patient's age and concurrent

associated chronic active colitis, we favor that this polyp represents

dysplasia associated with the patient's inflammatory bowel disease, and

not a sporadic polyp; however, it is unusual that this polyp occurred on

the left side of the GI tract. Since there is no dysplasia identified in

the adjacent rectal mucosa bordering the polyp, it appears to be excised.

Indications for surgery in the setting of an adenomatous polyp arising in

inflammatory bowel disease are relative, and multiple factors are involved

in determining ideal treatment. Clinical correlation is advised.

+ ---- so pretty much i'm sure that the gi doc will tell me that i'll be "rolling the dice" as far as choosing frequent bowel interrogations over total colectomy. i'd feel silly getting the colon taken out over a polyp but then i'd feel pretty silly in ten years if i didn't get it taken out and end up with colon cancer. any input from you guys?

Posted 1/24/2011 5:04 PM (GMT 0)
my only input is that I'm right there with you- overall my day-to-day life is pretty darned good, however I have hundreds of pseudopolyps- no way to biopsy all of them. I'm sure 1 or 2 of them are not pseudo, but the real deal. My GI has been recommending surgery for the same reason- you'd hate to be doing alright, then 5 years down the road wind up with cancer. And get the darned colon removed anyway! And possible die to boot. It's a horrible decision- good luck- I don't think there is a right or wrong answer. The fact that there is dysplasia would concern me greatly though, & most likely push me to make a decision fast.

Posted 1/24/2011 5:36 PM (GMT 0)
thanks for your input eva! yeah i'm leaning towards just getting the darned thing taken out. my uc has never been terrible but it would be nice to stop having to take all these oral and anal meds haha. guess the first big step is actually deciding to go forth with it. on the plus side i have a very supportive girlfriend who is also a nurse so she'll take care of me even if i have a temp ostomy. also the air force surgeons here said i'd most likely be referred out to the surgeons at university of cali in davis or the surg center in san francisco since they don't do many j-pouches here. i'm hoping that they can do most of it laparoscopically with a hand port. eek!
Posted 1/24/2011 5:45 PM (GMT 0)
You can meet lots of folks who had surgery due to dysplasia at www.j-pouch.org They will be able to share with you their hesitations and decision making process. I'm in California, had my surgery in LA but thought I would let you know that the best place in the north to go is UCSF. However, I think there have been some satisfied customers in the Davis/Sac area that posted on the jpouch site. You can post a recommendation at www.j-pouch.org too.

Sue
Posted 1/24/2011 7:50 PM (GMT 0)
I personally wouldn't wait....because I'd always fear the worst anyway. I wouldn't embrace the process and would definitely go through a myriad of emotions..but I would depend on all who have had the surgery and learn to move forward from that.

Cancer scares me more actually. Especially bowel cancer since it can be ever so...silent, especially with chronic inflammation.

It's not like you can have that part excised as would others who don't have UC...which totally sucks.

q
Posted 1/24/2011 8:15 PM (GMT 0)
If I got that report my first reaction would be to have yearly colonoscopies rather than my current every 4-5 years. My understanding is that colon cancer is slow metastasizing which is why it is so preventable/curable. And if one cancerous polyp was found I'd ask if I could keep the "good" colon parts.

That's just me, very reluctant to part with any body part. Said no to hysterectomy over 5 years ago when I had uncontrolled bleeding and the "cure" was removal of body part. I said "Why can't you find out what the actual problem is instead of removing something you're not sure about?" It took 4 GYN's before a fibroid was diagnosed, removed, voila no bleeding.

Perhaps my stubbornness will be the death of me...but I hope not.
Posted 1/25/2011 5:09 PM (GMT 0)
yeah i'm still not sure what to do. obviously don't want to part ways with my colon. however, i'm applying for anesthesia school and if i get in i would start next summer and it would be for three years. wouldn't want to get surgery and have to start over again. of course i know the decision comes down to me but i really appreciate you all letting me know what you think. it's much easier to part with the colon than having to say goodbyes on my death bed due to metastatized cancer that could've been prevented.
Posted 1/25/2011 8:24 PM (GMT 0)
Maybe, just maybe....you could persuade the doc to remove that part of the colon....??

q
Posted 1/25/2011 10:48 PM (GMT 0)
from what i understood his main concern is that since i grew a polyp there that there's a chance i could be having dysplastic changes elsewhere in my colon that aren't readily apparent. really i'm just to the point where i don't want to have to worry about it, i know i'm already at a higher risk from just having UC and now having that polyp at a young age just seems to further put me at higher risk. i guess haha.
Posted 1/25/2011 10:56 PM (GMT 0)
It's true. You can read lots of stories of people who initially put off surgery to remove the colon only to have a colectomy and learn that there was more of a problem than originally seen. It's because the GI and the biopsies can't see/show everything. Not to frighten you but that's what has been reported. I really really encourage you to seek out the dysplasia folks at www.j-pouch.org

As for a partial colon removal; I don't know of any CR surgeon worth his salt that would do resection on a UC patient. I'm even flabbergasted to learn of a couple CR surgeons that will remove the colon but leave the rectum in UC patients. This always means future surgeries and if you have to have such a major surgery, by gosh get it all done at once!

Sue
Posted 1/25/2011 11:23 PM (GMT 0)
Thanks suebear. I was almost positive that the surgeons wouldn't consider it, and I'm surprised with the leaving the rectum during removal.

i heard of the rectal cuff being left, but for some are their entire rectums left?

q
Posted 1/26/2011 2:17 AM (GMT 0)
Quincy,

I have only heard of 3 people that have had their rectums left intact. Two have been from this board and one from the j-pouch board. The one on the j-pouch board did ultimately have to have her rectum removed due to, surprise, UC!! I'm sure the two from this board will ultimately travel down that same road. Yes, the rectal cuff (about 2cms) is always left for continence reasons. But in my case, and the case of others with lots of rectal disease, the cuff is stripped of its mucosa layer to remove any chance of UC remaining. Those that have their rectal cuff left intact face potential problems with cuffitis which is basically UC of the rectal cuff. Cuffitis is treated with enemas and oral UC drugs.

All the more reason to only consult with an experienced CR surgeon who has lots of UC colectomy experience!

Sue
Posted 1/26/2011 7:59 AM (GMT 0)
Thanks again for the clarification Sue...much to ask and get down and dirty about before making the first cut!

I'm puzzled that doctors would even consider to leave a diseased rectum intact...

q
Posted 1/26/2011 3:40 PM (GMT 0)
thanks sue on the j-pouch website recommendation. i'm sure like this site more of the folks on there are those having problems with their pouches so i shouldn't get too scared about all the horror stories. i did try doing some research on the longevity of these pouches. seems that folks that had them done 20 years are still going strong with them. good stuff!
Posted 1/27/2011 5:23 AM (GMT 0)
hey sue how often do you go? my concern is that by getting the j-pouch done i'll be made ineligible for future deployments, which means not being worldwide qualified, which means not being able to go to anesthesia school through the military. i've been in the air force for 11 years now. i think it all comes down to how well i do post-jpouch and whether or not they think i can sustain a deployment without any immediate medical assistance. my other concern is sitting in the operating room providing anesthesia to a patient during a long surgical case and then having to ask for relief once an hour so i can go empty my pouch.
Posted 1/27/2011 9:45 AM (GMT 0)
I would suggest going over to the hw ostomy board. I just read about a pilot who opted for a surgery (sorry can't remember the name) where he has an opening on his side and he empties it I believe once a day or so. He is really happy with it. Sue knows what I am talking about. My surgeon told me about one of her patients who is also a surgeon. He was complaining that he couldn't hold it for that long...she asked how long he could hold it for and he said four hours. Her answer was be faster in your surgeries, lol. Four hours is an incredibly long time to be able to hold it, especially when you are used to uc.

Find an excellent surgeon, do your research. Don't trust just what your gi told you as far as recommendations for surgeons. Finding a good surgeon can make all the difference. Oh, and even the really good surgeons won't guarantee they can do it lapro. They decide when they go in. Many, many surgeons won't do it lapro at all. I had a wonderful surgeon who made no promises, but I woke up to see these tiny little incisions. I was so grateful.

Good luck!!!
Posted 1/27/2011 2:05 PM (GMT 0)
The surgery Disneynut is refering to is the k-pouch. There is a discussion thread for k-pouchers at www.j-pouch.org if you want to learn more about that procedure. I don't think anyone can predict how you will do post takedown but I do agree that it's imperative to get the best possible CR surgeon you can find who comes with a lot of recommendations and has done a lot of jpouch procedures. Not every CR surgeon is experienced in this surgery. I also wouldn't worry about lapro vs open. I had open surgery by the top CR surgeon on the west coast and I was driving 7 days after surgery and returned to work at 3 weeks. Skill and experience are far more important than surgery style.

Sue
Posted 1/28/2011 10:37 PM (GMT 0)
well like i said i can only go with whatever CR surgeon the air force will send me to. at least the air force surgeons won't be doing it. not that they're not good but they don't do these that frequently. so i'll probably be referred to UC Davis or San Francisco. going back in for another scope in april to see if there are any more changes. from there i'll decide whether to pursue surgery or keep up with surveillance. ideally i'd like to finish anesthesia school before i go getting anything taken out.
✚ New Topic ✚ Reply