Low Grade Dysplasia

Going into surgery as healthy as you can would be your best option, of course.  I was in decent shape before my first surgery, other than a last minute case of erythema nodosum, that affected my ability to walk into the hospital.  I had another 7 mos. to build myself up for the next two surgeries, and was in very good shape for them, making my recoveries relatively easy for major surgery.  Walking helped me the most.  I am 9 mos. post takedown and continue to walk as often as possible or use my exercise track at home.  I had my surgeries at 61.  Tomorrow, I will be walking a 5k for March of Dimes and going away in two weeks on a hiking/shopping/eating vacation.  I also had dysplasia, with severe pancolitis, severely active, and that, along with my age,  general health, and the fact that Remicade was not working, convinced me to have surgery.  No regrets!  I also just came back from a trip to Bermuda, no issues, just took 2 Lomotil before we went out for the day, drank lots of fluids, and had snacks on hand.  Only issue was that I had to use the toilet while on the first flight going down and just happened to be in there during an episode of turbulence!  Do be prepared for the adjustment period over the first 6 mos. to a year.  

Thanks, sounds like you are living well after surgery! 

Not perfect, but pretty darn good!

Hello, Canman.

I was told I showed signs of unusual cells, which came back from further pathology as not dangerous, and they would watch me. Five years later I was diagnosed with stage 1 cancer. We went to surgery within three months. No nodes were involved, all other organs clear (nothing spread). The only reason I waited those three months between diagnosis and surgery was because I needed many tests and MRIs, got second opinions on pre surgery therapy, and also mentally prepare. I was healthy in every other way, no meds whatsoever, no flares, weight good. Even if I weren't healthy I would have gone directly to surgery as quickly as possible. I didn't want a small time bomb inside me, and it was contained as far as tests showed. My recovery was slow and painful in any case in the first month. I was cardio strong, I'm not sure being cardio strong would have made a difference. The pain was so bad I could barely breathe anyway, or move, for days after surgery. Now I can be away from the house for hours, no problems. Best wishes whatever you decide to do. 

In the UK is normal to monitor low grade dysplasia, Scopes aren't brilliant for detecting abonormal cells and signs of low grade dysplasia can come and go and only a very small area can be biopsied.  For years the doc described mine as a area of cell regrowth without trauma.   The second it starts to look likes it changing they prompted it out.

Its a tough call you have to make for yourself.   Your not well at the moment so would probably see real benefit from a J-Pouch, certainly it doesn't sound like you have a lot to lose by having the op but potentially more to lose if you don't.  It would be worth checking you don't have any crohns markers first and establishing if your a candidate for a J-Pouch or if you would stick with an ostomy, that may make the decision easier.

Its always a good idea to focus on being healthy, whether your going for the op or not.  The better shape your in the better you will cope.

Best wishes

Hi Canman, 

Saw your post and it resonated with me. I never had UC or Crohns  and was fit and well when a chance colonoscopy discovered polyps  in my colon and rectum with low grade dysplasia. What followed was a lot of heart searching as the initial consult left the option to me. The report was vague so my gi sent me for  a second opinion. The UK delays meant that took 12 months and it wasn't the guy i was meant to see !! 

In the end I got another colonoscopy elsewhere here, which showed there were dozens of the things, mostly with Lgd. The choice was either leave it and hope I'd be ok ... Try multiple removals  ( too risky)  ... or have a proctocolectomy and j pouch made. 

No-one could tell me what to do. Nor would I tell anyone else what to do. It is a very hard decision. The only thing I know it that they knew I would  get cancer "at some point from 2 to 20 years " .

It waa presented as a choice. Realistically it wasn't. I got it done 3 years ago... It's not been easy but I have peace of mind I cannot now develop cancer. That to me outweighs everything else. LGD is something that will develop,  just no-one knows when. I'd say talk to your doctors,  family etc and be wise. By the time they got to me things were on the turn.

Now I'm 9 months into pouch life. Doing well and safe. That's what matters.  I wish you well. Happy to talk more if it helps. 

Busybee ��

Thank you for all the responses!

Busybee I am glad to know life is going well with a j pouch. It seems questionable to hope LGD doesnt developed into something worse over the course of your lifetime... and consider the fact that I already have this horrible disease that ruins my quality of life, why not get rid of my colon? For me it's about having a sense of confidence that I can live well with a j pouch and I really worry about living with a bag the rest of my life. Once I feel I can have confidence in j pouch surgery as being successful (I know it has a high success rate) I will probably do it. For now I am just contacting as many people as possible with j pouches and hearing about their experiences living with one. So far it's been virtually all positive which is reassuring.

You have absolutely the right attitude to this, canman. My colon wasn't an issue till they found  polyps by chance  .... had I not had upset stomach from previous surgery that made my GI say let's just check you don't have a kink inn the bowel  I wouldn't ever have known I had LGD till it was likely too late. Bizarre as it may sound it was a lucky moment in my life ! 

I did just what you are doing , got lots od info and talked to others. The bag isn't so bad-   I had a loop ileostomy for 2.5 years. Unusual to wait that long. 

The pouch has it's challenges but I'm glad I did it now. My advice is go for it. Get a great surgeon, talk it through and get your support  team round you. There will be bad days but the good ones outweigh them. The body has an incredible ability to heal and adjust. My greatest fear was pouch incontinence,  not least as my colon was so predictable. That fear only happened when I had a stomach  bug recently. Pelvis floor training and a positive attitude are the key. And remember that though you may see stories of people struggling that's more than balanced out by the thousands  of pouchies who are just busy living life to the full and loving it!! 

Thank you Busybee! I appreciate the advice!

I struggled at first with both the j pouch and the ileostomy but it got better after a while. I only had the take down December 12 of last year and the first surgery was October 11 of last year. I am doing better then before but it took time to get better. It also helps if you have a good support system because without them I would've given up for good. Although not everyone will be so understanding because there are people who think I should get over it. Unfortunately a couple I thought were my friends are like that but they refuse to leave. So my manager had to file an eviction and the court date isn't until the 18th. What makes it bad is they took advantage of me knowing what I'm going through. Well, the legal system will deal with them for me. I even had a family member that said it's annoying to talk about what I'm going through. Apparently I'm only supposed to talk about the positive things. I'm sorry but there will be times where bad things might happen. Life can be good but it can also be bad. Anyways, if someone is like that stay away from them. Those that really care won't tell you to get over it because they will do what they can to be there for you. I'm lucky I found this website and have people that care in real life too. If you ever need someone to talk to I'll be glad to listen. 

Get the surgery. I was diagnosed with LGD. Had the surgery, and they found stage 1 cancer in pathology specimen.

I had 2-3 scopes and all stated LGD so I had the surgery. When the pathology report came back after it was out, it showed no LGD...NOT SURE WHAT TO MAKE OUT OF THIS

Hi everyone!  new to this forum.  I've been desperately searching for any info on Low Grade Dysplasia.  To original poster, it does sound like a while to wait to test again, here is my story:

I was diagnosed with UC 3 years ago. It's been completely under control ith Lialda and Canasa. I see my gastro doc every few months.

Had a routine colonoscopy in April. The UC is in remission and all looked good except one of the random biopsies showed Low Grade Dysplasia which surprised my dr. There are no polyps or anything.

We did a 2nd colonoscopy (with chromo dye) in hopes to locate the dysplasia on May 5th and she saw nothing and pathology came out completely clear, no LG dysplasia anywhere and she took twice the number of biopsies.

Seemed like good news, maybe the first pathology was a mistake.

She sent both pathology reports to a 2nd pathologist (NYU) and they confirmed exactly what the first pathologist found. They confirmed the dysplasia was definitely there in the 1st colonoscopy and definitely clear in the 2nd colonoscopy.

Which leaves us at a loss. So we are going to do aggressive surveillance until they find it. I have a 3rd colonoscopy scheduled for 7/14 and she'll use a white light and chromo if she thinks it'll help. The hope is to find the stupid dysplasia and then hopefully find a surgeon who will do a partial resection.  it's hard to hope for that.  

Why do they do biopsies but not know WHERE they are biopsying? Only thing she knows it's in the left colon.  Is it normal for them to not mark where they biopsy?

Sorry to take over your post Canman but we have your doc on the one hand happy to wait 7-9 months and my doc who's got me going for a 3rd colonoscopy in the course of 3 months.  

I'd love some responses and opinions on this.  I'm 46 years old and completely healthy and active, go to the gym 5x a week, lift weights, etc.  I also have 2 kids (boys) 5 and 3.

Thank you!

Laura

Laura, what makes this tricky is that it's generally not as simple as a single pre-cancerous area turns into a single area of cancer. What actually happens is more like 1) UC substantially increases the risk of colon cancer; the risk increases each year after diagnosis, rising to fairly enormous levels over 20 years or so. 2) Areas of dysplasia can come and go. Not all of them will turn into cancer, but they are better understood as warning signs that your colon is beginning to undergo the changes that increase the risk of cancer. 3) Resecting an area of low grade dysplasia is probably a waste of time. You will develop more, in all likelihood. 4) The decision to have surgery for dysplasia is really a risk/benefit calculation, and depends in part on what you're willing to do to reduce (or eliminate) your cancer risk. 

I hope this clarifies a murky area for you. Aggressive surveillance is a reasonable choice, but it only makes sense if you have some idea what findings *would* move you to have surgery. More areas of low grade dysplasia? High grade dysplasia? If you wait for colon cancer the treatment is much, much harder if/when it occurs.

Laura, your story matches many of our own.  I'm sure if you searched you would find my early posts too (December 2016), one was entitled 'mislead/misdiagnosed'.  At the time that is strongly how I felt.. but hindsight is a wonderful thing, and most are of the opinion docs made the right call for me and I guess now my thoughts mirror poucho Marx above.... I'm just not sure about it.  When unsure I guess it's best to take the safest course of action rather than end up seriously ill.

I had a diagnosis of UC, but was well treated without meds for many years, on screening i had an area of cell regrowth they categorised as low grade dysplasia, they came back Clear on retest, but doc asked for second opinion and a result of high grade dysplasia came back.  Had the urgent bowel resection, but once out nothing was found..  to start I was a bit bitter about this, but I know there was a risk there, and what's the point of being screened of you don't react to it.

If they can remove the area affected by colonoscope they probably will, literally they can just chop a bit out as part of your normal procedure but it has to be a small area (around 15 to 20mm I think) and preferably not flat or in a tricky place. As Scott said, an 'opperative' resection isn't really an option most docs will consider.  The risk of reoccurance is very high. Usually total colectomy is the outcome of the resection can't be don't by cscope.  

Colonoscopy isn't actually a good way of monitoring for dysplasia, because it really can be like funding a needle in a haystack. Again as Scott says dysplasia can come and go because the gut lining repairs itself at an incredible rate, but docs consider any dysplasia as a sign things are wrong and about to get worse. Even when the affected area is out on a slab it can be hard to find, as my earlier post attributes.  In fact colonoscopy can by quite harsh on the body, so I can't see them maintaining monthly scopes for long!  I guess they want to catch the dysplasia in action and try and resection it by cscope.

If found it may be worth asking the doc to tattoos it for future reference.. at least then you have a frame of reference for future decisions, my doc regrets not tattooing my affected area

Sorry you've not had amazing news, but you in good company here.  No matter what happens you stand a good chance of a good outcome!  I wish you all the best

Thank you for your replies!  I guess I'll see what this colonoscopy finds and then talk to a surgeon.  I'm starting to wrap my head around the idea that I will need a colectomy at some point, sounds like J pouch from what I've read.  I had a double mastecomy 4 years ago and recovered beautifully (had DCIS in one breast and chose to remove both), not to mention 2 C-sections, I know I'll be ok, just seems to have come out of nowhere since the UC is so under control, other than taking my nightly pills and suppository it's like I don't have anything at all.  Well I'd certainly rather be safe than sorry.

So why do you suppose Canman's doc is ok with waiting 7-9 months to retest?  I do like knowing I have time to figure this out.  Don't want to wake up and have it be to late (everyone's fear).

Thanks again for the responses, this is so confusing!

The cancer risk revealed by LGD is sort of an early warning sign. It's not a time-critical emergency most of the time. People can take their time to select the best surgeon, organize their lives for a series of surgeries, and get their health insurance in order. If they Iike, they can enjoy some more time with an unmodified intestine. Short delay carries only a small risk, and very long delays carry a greater risk. These are reasonable trade-offs, as long as self-deception doesn't creep in.

I am not sure why my doc choose that timeline. You may want to check out "The J-Pouch Group" on Facebook. There are people there who had colectomies due to dysplasia despite being in remission. I find the people there also very helpful. Good news is from my research practically everyone I talk to are able to live happy healthy lives with j pouches. I am on the verge of booking my surgery. 

Good luck Canman!  I think I'm gonna get this colonoscopy and then meet with a surgeon to discuss.  I guess I'd prefer to enjoy the summer and then do the surgery since I've got time.  I've read some and it does seem like the majority of people are happy with their J pouch.  I'm just concentrating on being thankful they caught this, I kind of want to get all non essential body parts removed at this point!  

Thanks again!

Laura

Another thing to add to the equation is the length of time since the UC diagnosis. Once 10 years goes by, the cancer risk begins to rise, mainly with pancolitis. So 10 years since first diagnosis you are just begining to see the increased risks. Sure you can get cancer earlier, but unlikely.

LGD can be tricky. There is no straight line progression and it can simply disappear, or have cancer develop somewhere else. This is one reason why they never recommend a partial resection for UC, only a total proctocolectmy will do. If you are in a constant state of inflammation, it is difficult to discern the dysplasia of inflammation from the dysplasia of precancer. Like mentioned before, LGD is your early warning if you choose to heed it. 7-9 months may be completely reasonable for your case. However, if you can't sleep at night, why not just ask for an earlier scope, like 4-6 months? Seems like a good compromise. You don't need the added stress that this worrying may be causing you. You can also ask for a surgical consult to see what the surgeon's ideas might be. Granted, surgeons cut and GI's do medicine, but surgeons also know when it is the right time for surgery. 10 years without remission is by itself a reason for colectomy.

I will say that I was set to have a prophylactic colectomy after 23 years from my pancolitis diagnosis and never had any dysplastic findings. I gave myself a year to get my life settled down and my kids older before going on this life changed journey. Unfortunately, a few months later, I went into a severe refractory flare and wound up having surgery under more urgent conditions, and in a weakened state. Still no dysplasia on the colon pathology. Still, no regrets.

If you are sedentary because of your health, don't go on any big exercise regimens at this point. Do simple things like walking more, that improve general fitness and strength. Plus, you are more likely to keep it up.

Jan

So Jan you are feeling good with your j pouch? I am hesitant to get it but at the same time dont have a life now. The surgery for me is much more about lifestyle than it is about dysplasia. I just want to live my life normally.

I may have waited longer before getting surgery, however age was also a factor for me.  I had severe pancolitis along with dysplasia and was in my early 60's.  I also was not really getting good results with Remicade, so made a decision to have the surgery based on these facts.  I was diagnosed 7 mos. prior to starting the j-pouch process.  So far, good results!

"Live my life normally." Well, not to be flippant, but that notion sort of flew out the window about 10 years ago for you. Essentially, there is no option (surgical or medical) that will restore you to your pre-UC life. That said, most people do quite well and lead full lives.  

For me, colectomy saved my life. I would have bled to death without it. So, yeah I feel pretty good about it. It's not all rainbows and unicorns, as I had plenty of complications, and still have chronic autoimmune disease. But, in my 22 years since colectomy, I've raised a family, lived an active life, and done a lot of traveling.

The key is not not expect perfection and you won't be disappointed. Hope for the best but prepare for the worst.

Jan

Basically by live a normal life I mean do things that normal people do. Get up in the morning, go to work, not have anxiety about crapping my pants, drive places without fearing crapping my pants, play sports, date, or simply leave the house without fear. I don't think you need a perfect colon to do these things just something that works well enough that won't hold me back. If i can just be continent that would be life changing I would probably feel pretty normal again, certainly all the mental anxiety and depression from not being able to leave the house comfortably would go away. 

Yes, that sort of normal can be expected. However, understand that in the early adaptation phase, it may be as bad as a UC flare, without all the bleeding. The difference is that it gradually improves and it is more predictable. I had a high frequency and urgency those early months, but I could delay a bowel movement an hour or two, which was not possible with full blown UC.

Two decades later, I still like to know where the nearest bathroom is, but do not consider myself a bowel cripple. I still even go car camping, hiking, long drives, and long flights. My arthritis is more of a problem than my gut.

Jan

I was diagnosed with LGD in 2014 after almost 30 years of living with UC.  GI and surgeon said it was time to get the colon out, but I convinced the surgeon to do more frequently monitoring first.  Started having every 4-6 month colonoscopies.  Life got busy and 4-6 months became 6-8 months which became 8-12 months. Earlier this year my colonoscopy revealed HGD, and I immediately booked my surgery.  Unfortunately hidden behind the HGD was a stage 2 tumor that the pathologist said likely wasn't visible during the colonoscopy.  It's totally my fault for waiting and not taking LGD more seriously.  I'm doing fine (no chemo or rad) and am going through the j-pouch surgery stages, but now I have this black cloud of potential metastatic cancer recurrence following me around for the next 5-10 years.  That's far worse than any worries I had about getting a j-pouch or having an ileostomy.

Bottom line - don't mess around with LGD!  It's not going to go away, and will only get more serious in time.

Thanks for the reply Ledergoster. In fact, I have decided on j pouch surgery and am looking at a possible September date. I just need to wait and hear back from my doc. You're right LGD isn't something to mess around with!