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Posted 6/15/2018 1:11 AM (GMT 0)
Hi all, I had a colonoscopy in May 2017, all was fine. I had another one this May 9th I waited at least 2 weeks did not hear any reqults so I called and they sent it out to another lab I thought no news over a month later I should be fine right well my Dr. called me today he just got the results he took 29 samples from rectum all through my colon (i've had pancolitus for about 20 years) This is the results

(A-E) Colon, right, transverse, descending, right and rectum, biopsy:
- Extensive low-grade dysplasia at all sites.
- One patch of active chronic colitis and ascending colon

He said he talked with 2 other GI's and all three recommend having my colon removed. What are your thoughts. And would a fine colonoscopy 1 year eariler be be to my whole colon be affected now what does that mean is this agressive. Can I wait to do surgery until November, I'm not back home unitl late August to meet with my Dr and a surgeon.

Thanks for any help I'm freaking out a little todat.
Posted 6/15/2018 1:23 AM (GMT 0)
You need to get your colon out ASAP. You can't risk it turning into cancer.

Post Edited (C_G_K) : 6/14/2018 7:38:36 PM (GMT-6)

Posted 6/15/2018 1:57 AM (GMT 0)
I wouldnt wait. Im sorry you got this news.
Posted 6/15/2018 2:07 AM (GMT 0)
Ditto.....I had UP (ulcerative proctitis) for twelve years. It never traveled further into my colon, but with UC, they stress to remove all of it if removing the rectum. All my colon had wrong with it was mild diverticulosis. However, my rectum was a mess. I have a permanent ilieostomy. My surgeon suggested I not go with the j pouch, too many complications...at least in my case. I had my surgery in June of 2010. Dysplasia is serious and yes, you could have had a normal colonoscopy last year and dysplasia this year. Thank God you had a colonoscopy before it turning into cancer. Yes, have that colon out, it will save your life.
Posted 6/15/2018 2:14 AM (GMT 0)
I had surgery and I have a jpouch now. I didn't do it for Cancer, i did it because of severe and unresponsive UC, but I can tell you, life is good without a colon. No more UC worries, no more drugs, no more cancer worries. If it's necessary, especially in the case of cancer, I would take the appropriate steps to ensure you live a long, healthy life. Low grade sounds like there's a lot of hope, but I would move quick personally. No reason to hang on to something that can potentially make you very sick, or even end you life. I would do it before november personally. I wouldn't rush of course, you do need to find a skilled surgeon you feel comfortable with, but i would start that process literally tomorrow. Cancer can move fast, and this sounds like this particular case is/has. Of course a second opinion from another GI is always a good idea. Did you see the report yourself?
Posted 6/15/2018 3:13 AM (GMT 0)
Oh...never what we expect to hear. I would have it out asap. Dysplasia is already changing towards cancer. Dysplasia in a large area says not to wait, especially if it's happened within one year.

Hugs,
q
Posted 6/15/2018 3:21 AM (GMT 0)
Thank you all for your responses.
I did see the report and it said all 29 samples have low grade dysplasa. The reason I want to wait til November is I have a cruise booked with my husband and I really feel this is needed before I do anything. My dr is in NY and I wont be back to NY till August my Dr said I can wait until then to talk with the surgeon, I am concerned and worried but I really would like to have a great vacation with my husband before I get into major surgery. How long does it take and does recovery take.
Posted 6/15/2018 3:53 AM (GMT 0)
I could be wrong about this, but my understanding is that low grade dysplasia does not necessitate removal of the colon. High grade dysplasia does. When it's extensive low grade dysplasia, I think it's more a grey area, so to speak.

Did your GI have multiple pathologists review the biopsies? I would suggest that strongly, if it wasn't already done. If they agree it's all low grade, you have more time to decide whether or not to have surgery. If a second opinion finds it to be high grade, you'll need surgery without much debate.

Even if it's high grade dysplasia and you need surgery, it's probably safe to have the surgery later in the year. Progression from dysplasia to colon cancer to metastisized colon cancer probably wouldn't happen in just a few months. Then again, I just said 'probably' twice, so...who knows?
Posted 6/15/2018 5:39 AM (GMT 0)
There were two pathologists that stated all was low grade dysplasia, what concerns me the most is just one year proir no area was dysplasia to the entire colon having it. I still think I can wait til November for the surgery he did consult with tso other gi's that recommend surgery I am going to try to reach my gi from last year she moved or I wouldn't of changed gi's and see what she says also.
Posted 6/15/2018 12:49 PM (GMT 0)
Sorry to hear. The whims, fits, and surprises of UC are really hard to wrap your head around at times. Understanding it is not always possible.

I'd start researching and have a couple consultations with colorectal surgeons who do a lot them in your area. Decide who and where is doing it, get the surgery booked as it will be a few months at minimum until they can get to you. The longer you wait, the more risk and more likelyhood of needing chemo therapy, should they find actual cancer after removal.

Songlady had an area of dysplasia she was having monitored and upon colorectal surgery they found cancer, and she's currently undergoing chemo as a precaution. A few posts from her on that process:

/www.healingwell.com/community/default.aspx?f=38&m=3965781
/www.healingwell.com/community/default.aspx?f=38&m=3971620
/www.healingwell.com/community/default.aspx?f=38&m=3986388

What part of NY state are you in? I know 3timechamp is a NYer and had colorectal surgery early this year.
Posted 6/15/2018 1:32 PM (GMT 0)
very sad news for you.

cancers grow at different speeds, and that even varies by individual.

it may help to think if you heard you had stage-0 cancer in the kidney or pancreas or other organ - how long would you wait before getting the cancer removed? OR, how would you feel if once they removed you colon, the pathology report said stage-1 cancer, and recommended surveillance of surrounding tissues and organs.

at least begin talking to surgeons and getting all possible information.

good luck
Posted 6/15/2018 1:38 PM (GMT 0)
It never hurts to get a second opinion, but it sounds like your GI Doc already did that. I wonder if an oncologist would know more about it than a GI doc?
Posted 6/15/2018 2:06 PM (GMT 0)
If your doctor thinks waiting until november is okay, they probably know best. November is only about 5 months away. In reality, it takes some time to get yourself organized and scheduled. I would think, if you started planning today, you probably wouldn't get in for a month or two, but in emergencies it happens faster. The first step is consulting with surgeons. Did you get referrals, or have you looked around? You can ask the surgeon about waiting, and whether it's a good idea too. When is the cruise? If you had surgery in a week or two (just saying), and the cruise is in 3 or 4 months, you will be well enough to go with your ostomy. I know it sounds difficult, but it's really not that big of a deal. I took a trip with my bag. I just packed some extras and wore a small one under my high waist bottoms when I swam. I was able to tuck it in, and the bottom was ruched, no one knew I had anything. It's actually very easy to hide, especially under dresses. Consult and see what you find out. It is low grade, which people often monitor for vs having surgery, but the fact that it's so widespread, so quickly, is worrisome.

Full recovery for me, didn't take that long, but it's very independent. Some people go back to work within weeks. Some people take a month - two months. I was feeling pretty well within a few weeks.
Posted 6/15/2018 4:53 PM (GMT 0)
Regarding Songlady's surgery....she has mentioned she should have gotten her colon out much sooner than waiting.

None of us can say wait and all is fine. My concern would be the change in one year.

But in saying that....dysplasia type of cells could state the wait, how deep into the layer..etc. i would also suggest discussing about having a chromoendoscopy that might give a better view of abnormal cells in that area or other areas.

q
Posted 6/15/2018 10:50 PM (GMT 0)
Save the cruise as a celebration when you rid yourself of UC for good. If it were me I would not wait. Think about making the drive to NY city if you can't find experienced surgeons in your area.
Posted 6/16/2018 12:01 AM (GMT 0)
Have you been to the IBD center in Rochester? They are about 90 minutes from me but I have heard good things about them. I would want a second opinion, so sorry you got this news.
Posted 6/16/2018 12:55 AM (GMT 0)
I don't know where that last guy came from, but sounds like an old fashioned medicine man from the 1800's who used to sell stuff off his wagon. Anyhoo…...I think you got great advice from the people in here, who are with and without colons. I don't know your age, or just how bad your UC is and your medications. I was 63 when I underwent the surgery to remove my colon and rectum, prednisone dependent, and sick as a dog. I was hospitalized for 11 days and it took a good six months before I actually felt well. Everyone, and I do mean everyone, is different in the varying degrees of this disease and all have different results from medications etc. You seem perplexed as to why you could go from a colonoscopy which showed NO dysplasia last year to mild dysplasia this year. No one knows what lurks inside our bodies. I had a girlfriend who waited a year and a half between mammograms instead of her usual once a year. The mammogram from a year and a half ago was completely normal. The recent mammogram showed stage 2 breast cancer.
Posted 6/16/2018 2:19 AM (GMT 0)
Only your medical team can tell you how aggressive the dysplasia is. Nobody here can say how much time you have before it becomes cancer. It may never become cancer, or it could start this month. Just remember that dysplasia is not cancer, but it can be pre-cancer. It depends on what the analysis of the samples says. I only know this because someone in my family had colon cancer, but he didn't discover it until it was already stage 2 (in the lymph nodes). He had an area with a cancerous growth and then further up the bowel there was lots of dysplasia that was transforming quickly into more cancer, but that's probably because he already had cancer.

Anyway, it sounds like you need to talk this over more with your doctors. If they say you can deal with this after your vacation then go enjoy yourself.
Posted 6/16/2018 5:28 AM (GMT 0)

momto2boys said...
Have you been to the IBD center in Rochester? They are about 90 minutes from me but I have heard good things about them. I would want a second opinion, so sorry you got this news.


I actually am going to Rochester IBD center. Where do you live because they are about 90 minutrs from me also but nobody near me is any good in my opinion the one in my town wanted me to do my scopes 5-10 years apart which if i stuck with him i wouldn't of had these last 3 scopes and not due until at least 2020 so this wouldn't of been caught for another 2 years.
Posted 6/16/2018 12:46 PM (GMT 0)
Hi Coral -
So, others have mentioned my story. Colonoscopies had been disclosing abnormal cells for me for about 1 1/2- 2 years, random abnormal cells, so I was having colonoscopies every 6 months. Last Fall suddenly there was a stricture where there had been none only 6 months before, so I quickly scheduled my surgery.

My GI (and my whole medical team) is associated with Yale.

My GI had been urging me to talk with the surgeon for about 2 years and I resisted. My UC was only mildly active and I felt great! And I, like you, had plans - I was leading a tour group overseas on a vacation tour last Fall! So, I did that. And then I traveled a lot within this country, because my FIL was ill and then died. And six weeks before my surgery I was in a 5K (I walked, I didn't run, lol) So in retrospect I am glad I did all those things, but, BUT..... if I'd had the surgery earlier, could I have avoided these 6 months of chemo? I will always wonder, though I am not beating myself up about it.

I would say, talk to your GI, talk with a surgeon, maybe an oncologist? Ask if a CT scan would be helpful? I did a HIAA 5 test a year ago for the oncologist (urine collection after a specific diet for a few days) and it ruled out carcinoid syndrome, but did not find the existing adenomatous cancer... so that was a false reassurance for me.

I had always assumed/planned that I would not need surgery, that my UC would be addressed by ever newer meds. I REALLY resisted. But.... it's not bad at all. I love having my breakfast with 2-3 cups of coffee and not needing the bathroom for a few hours! And my list of "safe foods" keeps expanding to things I have not eaten in a decade or two!

If I can be of help, please ask away, and/or tag me in a post. I am keeping you in my thoughts as you work through that feeling of shock. (I remember that feeling well!)
Posted 6/16/2018 6:41 PM (GMT 0)
Your story sounds a lot like mine. I never concered the surgery route. I seemed to manange well didn't really take any medication for years when I felt like a flare I was able to manage by altering my diet and rest until 2015 it really got a hold of me but I still went zip lining while in a full flare. The dr I had seen said I didn't need to be scoped for another 5 to 10 years and I didn't think he really knew much about uc.


songlady said...
Hi Coral -
So, others have mentioned my story. Colonoscopies had been disclosing abnormal cells for me for about 1 1/2- 2 years, random abnormal cells, so I was having colonoscopies every 6 months. Last Fall suddenly there was a stricture where there had been none only 6 months before, so I quickly scheduled my surgery.

My GI (and my whole medical team) is associated with Yale.

My GI had been urging me to talk with the surgeon for about 2 years and I resisted. My UC was only mildly active and I felt great! And I, like you, had plans - I was leading a tour group overseas on a vacation tour last Fall! So, I did that. And then I traveled a lot within this country, because my FIL was ill and then died. And six weeks before my surgery I was in a 5K (I walked, I didn't run, lol) So in retrospect I am glad I did all those things, but, BUT..... if I'd had the surgery earlier, could I have avoided these 6 months of chemo? I will always wonder, though I am not beating myself up about it.

I would say, talk to your GI, talk with a surgeon, maybe an oncologist? Ask if a CT scan would be helpful? I did a HIAA 5 test a year ago for the oncologist (urine collection after a specific diet for a few days) and it ruled out carcinoid syndrome, but did not find the existing adenomatous cancer... so that was a false reassurance for me.

I had always assumed/planned that I would not need surgery, that my UC would be addressed by ever newer meds. I REALLY resisted. But.... it's not bad at all. I love having my breakfast with 2-3 cups of coffee and not needing the bathroom for a few hours! And my list of "safe foods" keeps expanding to things I have not eaten in a decade or two!

If I can be of help, please ask away, and/or tag me in a post. I am keeping you in my thoughts as you work through that feeling of shock. (I remember that feeling well!)

Post Edited (Coral) : 9/8/2018 3:13:55 PM (GMT-6)

Posted 6/18/2018 4:01 AM (GMT 0)
I might possibly be in the same position soon. Will be having my second "blue dye" colonoscopy in August to see if another low-grade dysplasia shows up. I keep trying to prepare myself for losing my colon (it seems to hate me anyway!) but most of the time I am in the lovely land of Denial.

It's a hard thing to wrap your mind around, having to deal with surgeries and possible bags, although the thought of not worrying about colon issues anymore is attractive, I'm not sure it's THAT attractive. I'd much rather go on as I am now, since Entyvio has me feeling pretty dang good.

::sigh:: I guess that's life, eh?
Posted 6/19/2018 2:21 AM (GMT 0)
my prior Dr who moved called me back tonight and she recommends another colonoscopy with the blue dye never had that done but she really thinks I need to have the surgery sooner rather then later so now I'm in the process of flying back to NY $400 more for flight because of timing. i have a lot of calls to make tomorrow.
Posted 6/19/2018 2:36 AM (GMT 0)
is there a list of questions on here somewhere of what to ask my surgeon before hand. What I need to know about.
Posted 6/19/2018 5:00 AM (GMT 0)

Coral said...
is there a list of questions on here somewhere of what to ask my surgeon before hand. What I need to know about.

I saw you raynaud's. Do your fingertips really get blue/darker or completely pale?
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