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Low level dysplasia and surgery

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Posted 6/19/2012 3:12 AM (GMT 0)
I'm hoping for information and scholarly articles related to low level dysplasia.  I've browsed and saved several from other posts, but suspect there is probably more good information available.

I was admitted to the hospital 5/25 and there until 6/6.  No bleeding, frequent D (12 - 16 a day) and I was generally run down and exhausted.  While in the hospital, although I truly believe my GI team had my best interests in mind, I think they believed the best course for me was to have an ileostomy, ideally while I was still there.  While that didn't happen, and I'm improving, I'm doing my research (as Quincy puts it!) and to assess whether surgery is right for me. 

Treatment was IV prednisone, then oral and released on 80 mg oral prednisone, and now I'm at 70 mg. 

On 6/4 I had a flex sig.  Following the procedure, the doctor said that my condition had improved to moderate but that he detected low level dysplasia.  At the same time, he diagnosed C Diff, although previous lab work for C Diff was negative.  At this point I'm still tired but generally feel I'm improving and seem to have beat the C Diff with a course of Vancomycin, which I will finish tomorrow. 

Thursday I have my next Remicade infusion.  I contribute the improvement to moderate from severe pancolitis a year ago to Remicade since I've stopped asacol and mesalamine. 

As I mentioned, checking other posts on Low level dysplasia here I know some of you have found valuable information about it, and I would love to hear your input. 

Old Hat, I noticed one post that you suggested low level dysplasia can be reversed or healed?  Does anyone else have this kind of information?  I've been working with a medical librarian and will have access to some databases later this week.  I'm meeting with my GI then the next day have a surgical consultation.  I believe it's best to be prepared, no matter the decision, but frankly I'd like to keep my colon as long as possible.   

In no way do I mean to diminish anyone else's decisions on whether to have surgery or not, but I'd like to be as be the best patient advocate I can be for myself.  

Thanks

potato  

     

Posted 6/19/2012 1:31 PM (GMT 0)
You're certainly welcome to continue with more frequent screenings and keep your colon. There is some discussion about how dysplasia can come and go, but it's also true that cancer can be in the colon and totally missed by biopsies. You might want to post this question at www.j-pouch.org Many people on that site struggled with this issue and I'm sure they could share their wisdom and experience with you.

Sue
Posted 6/19/2012 2:41 PM (GMT 0)
I would say it all depends on what you comfort level is with your situation. I honestly don't know what I would do in that situation, especially if my symptoms were controlled. I had surgery because my UC was severe and my colon was so bad that I was in danger of it perforating. But what I have read about low grade dysplasia is that it is recommended that you be scoped every year.
Posted 6/19/2012 8:01 PM (GMT 0)
potato-
Check out the report at this site:
http://www.med.upenn.edu/gastro/documents/ACGguidelinesforulcerativecolitis.pdf

It contains stats and situations under which certain protocols are recommended for dysplasia.

I had a colonoscopy in October, 2011 where low grade dysplasia was found. My GI recommended total colectomy. I refused. Had another colonoscopy in April where 55+ tissue samples were taken and no dysplasia was found. My GI still recommends colectomy but agreed to do another colonoscopy after 9 months.

He sends mixed messages when he sticks to the "party line" but makes comments such as "My last patient who had a colectomy was in the hospital for 25 days." and, in a letter to my GP, "there is an excellent chance that cancer will not develop".

I get the feeling that he's covering his ass but is not convinced that the surgery is the best idea. I am nearly 70 years old and in good health (other than mild UC) and do not want to spend the rest of my life dealing with possible issues resulting from a colectomy. Perhaps if my current quality of life was not so good, I would feel differently.

Read the posts on the Ostomy website and other sources to educate yourself thoroughly before deciding what to do.
I guess the bottom line is how much you are willing to risk to keep your colon.

I'm hoping that LDN has the cancer-preventing properties that are mentioned at the various websites.
See lowdosenaltrexone.org or ldnscience.org

Best of luck to you. :-)
Posted 6/20/2012 2:23 AM (GMT 0)
Many many thanks all.  ItsAlwaysSomething, that's exactly the kind of article I'm looking for.  I'm approaching the whole issue almost in depth as I did my masters thesis.  I have access to my some good medical databases at my university as an alumni, so I can find some more of interest and maybe even some obscure stuff.

I don't want to come off like an ass with them, I believe they felt they had my best interests in mind, but they really didn't include me in their decision/opinion.  Every day docs or wound nurses came and told me more the stuff like some patient they had who loves ileostomy, his new life and is playing golf.  So?  What does that have to do with me?  But it was every day and even though I would tell them I needed another pair of ears, someone else for support, I'm not sure they heard me until 2 nurses finally came in and told me they felt I should be able to go home to make the decision.  One even came in when one of the doctors stopped by for another shot, and she just stood near the door to support it.  What an angel! 

Also I wonder why it took them so long (10 days!?) to actually take a look with the flex sig. 

Plus, if all my tests showed negative to C Diff, how did they find it during the flex sig?  Do they do a stool test during the procedure or did they see the bugs?  To me that's weird.

I'm 62, and I don't know that an ileostomy as a lifestyle change feels right for me, either.  I could deal with annual colonoscopies easily.  But I also don't want cancer. 

So your help is gratefully appreciated.  I will check out jpouch.org, too, Sue.  Thanks. 

 

Posted 6/20/2012 2:31 AM (GMT 0)
BTW, I think the decision for surgery has a LOT to do with age.  What I'd do as a child, teen, young adult, or even middle aged would likely be a whole lot different than it does now that I'm entering the "golden age", ie. an aging hippy!

 

Posted 6/20/2012 4:06 AM (GMT 0)
Were you in a flare when low level dysplasia was noted? I get the impression that it is often a false positive when there is active inflammation- indeed, low level dysplasia in any circumstances remains a less than exact science and false positives seem quite likely from what I can tell.
Posted 6/21/2012 5:08 AM (GMT 0)
When I went into the hospital I was flarish, I'd say...  frequent runny D, no blood, urgency.  I frankly thought it was C Diff although those tests showed negative then.  I improved considerably when on IV prednisone, 150 mg, but I'm not sure (no records of that yet) but they cut me to less than 1/3 of that oral and the symptoms returned.  That's when they did the flex sig and found the C Diff.  The report I got is pitiful, so going from what the doc who did the flex sig said, UC went from severe pancolitis exactly a year ago to moderate, however showed low level dysplasia from several biopsies plus the C Diff.

He said he'd send a more complete report but I don't have it yet. 

I have collected several scholarly articles, thanks to folks here plus some research on my own.  At this point, I would absolutely agree with you, and that it definitely worth researching the existing protocol (which seems to be colectomy) because there seems to be some lack of agreement within the experts opinions. 

Posted 6/21/2012 2:41 PM (GMT 0)
At your age, you do not have to live with an ostomy if you don't want to. Jpouch surgery is a great option and if you are in good health, sans UC, it is a viable option should you have to make the surgery decision. There is also the k-pouch option too. Jpouches have been performed on many people in their 60s, 70s, and even 80s.

Sue
Posted 6/21/2012 3:12 PM (GMT 0)
It'sAlwaysSomething

Your link is very valuable and everyone with UC who is being pushed toward surgery should have a copy of this.
www.med.upenn.edu/gastro/documents/ACGguidelinesforulcerativecolitis.pdf

I did not have time to read the whole thing but the Practice Guidelines of Recommendations for Surgery should be read by everyone being pushed there who has questions. I've never had that happen but from reading here I get the feeling that some GI's basically give up on patients who don't respond to what the GI can offer (pills, enemas, prednisone, Humira, Remicade).

As someone whose UC never responded to Rx meds and who didn't want to use Remicade or Humira surgery was my only alternative until diet modification put me on the path to remission. This paper doesn't discuss my alternative probably but is a very valuable resource for people who might have other choices than surgery. They might just need a better GI.
Posted 6/21/2012 4:28 PM (GMT 0)

suebear said...
At your age, you do not have to live with an ostomy if you don't want to. Jpouch surgery is a great option and if you are in good health, sans UC, it is a viable option should you have to make the surgery decision. There is also the k-pouch option too. Jpouches have been performed on many people in their 60s, 70s, and even 80s.

Sue

So true. My mother in laws 80 year old neighbor had j pouch surgery right before I did and she did great and it still doing great. I believe she had cancer not related to UC.
Posted 6/21/2012 4:56 PM (GMT 0)
I just wanted to add my two cents and support as a long time lurker who has dabbled and gained relief from some of the recommendations offered on this site. Like you, in early 2011 I had a routine colonoscopy that came back as positive for dysplasia. My GI recommended that I have surgery, but offered to help me get a second opinion from the Cleveland Clinic. I did exactly what you are doing, looking for a reason not to have surgery. Fortunately I was referred to the head of the IBD Center. He had the biopsies reviewed by his pathologists, who determined that I was indefinite for dysplasia and recommended that I have a follow-up colonoscopy at the end of the year. Those biopsies showed the same characteristics of indefinite for dysplasia. At the time I did not have a great quality of life, so I had a surgical consult with a surgeon who is highly recommended in the ostomy forum. He urged me to have surgery right away. Not wanting that, I tried on my own the combo of Flagyl followed by a fecal transplant using my young child as a donor. Since then, my pancolitis has very slowly gotten better and the urgency, which has plagued me for the past 10 years has become almost non-existent. Now I can't say with 100% certainty what caused this improvement in symptoms but given that I have only taken flagyl since my experiment, I would tend to contribute it to the transplant that has just taken time to flourish. I still have some symptoms, but I attribute that to not getting the transplant high enough in the colon. Anyway, I had another colonoscopy a month ago and miraculously there is no sign of dysplasia at all, my pancolitis has improved and I got a two year reprieve from the fun of prepping for a colonoscopy.

Moral of the story...GET A SECOND OPINION from a GI and pathologist who only deal with IBD. I was told that more than half the time, high levels of chronic inflammation are characterized as dysplasia by "non-specialists." So I would see if you can send the biopsy slides and get a second opinion from somewhere like the Mayo or Cleveland Clinic. I will say this. The GI doctor at the clinic discouraged me from getting surgery unless it was confirmed that I had dysplasia when he saw that I had a consult with the surgeon. Also when I first saw him I was worried, like you, about developing cancer. He told me, that if it is indeed low grade then if I wanted, it was probably safe to get a confirming colonoscopy in a couple of months, but if it was high grade then it was straight to surgery.
Posted 6/21/2012 8:27 PM (GMT 0)

ItsAlwaysSomething said...
I had a colonoscopy in October, 2011 where low grade dysplasia was found. My GI recommended total colectomy. I refused. Had another colonoscopy in April where 55+ tissue samples were taken and no dysplasia was found. My GI still recommends colectomy but agreed to do another colonoscopy after 9 months


So according to IAS dysplasia can be reversed at least temporarily. I concur with the advice about LDN, perhaps that was the crucial factor for the reversal.

I don't see vitamin D in your signature. Please get your blood levels checked. Check out this chart from www.grassrootshealth.net/diseasepreventionchart.pdf . It indicates that up to 60% of colon cancer can be prevented with the serum blood levels of 42 ng/ml. These are not numbers from a bunch of hippie healy-feelies but the results the most recent scientific research. Only very recently it was thought that the main function of vitamin D was only to prevent rickets. Try for blood levels at least 50-70 ng/ml.
www.grassrootshealth.net

While you are at it you can look up the research regarding folic acid and selenium regarding colon cancer. I see that you take a multivite, I recommend taking one with 200 mcg of selenium which is the maximum safe daily dose.

Of course you must must must continue to monitor via colonoscopies or whatever. We are not doctors here so it may very well turn out that surgery is the best course of action.
Posted 6/22/2012 3:00 AM (GMT 0)
I had my remicade infusion today and as days go it was nearly perfect.  During the infusion, I showed my np some of the research I'd been reading, and in particular she commented on ItsAlwaysSomethings link to the Guidelines and said Kornbluth is my IBD teams go to guy and highly respected.  That was reassuring, as well as her encouraging me to continue my research in terms of evaluating whether or not to have surgery.  They also clearly want me to do this research/study/becoming informed while I am doing well to avoid making the decision during an emergency. 

In the meantime I think we all want (definitely I do!) to focus on my prednisone taper and get off the stuff...  I almost could say the surgery could be worth it just to stay off prednisone.  I'll also have another colonoscopy soon, likely related to when I'm at better  prednisone dosage.  I believe the team really does have my best interests and have the healthiest possible outcome, with or without surgery.

I think one of the most devasting aspects of this disease is our tendency to isolate, and there are no easy answers for us as patients or docs who are trying to solve this puzzle of a disease.  Not only isolate but then put so much effort in the many ways we try to treat it, meanwhile our bodies are trying to fight off this constant attack on them .  I believe Remicade certainly has helped me that the other commonly used drugs haven't, and I have to include many in the alternative category too. 

Then there's that pesky low level dysplasia issue... ItsAlwaysSomething (a perfect name and the truth!)  I'm happy that my IBD team is willing to support my researching and who knows in the end they might learn something from me too.

 

 

Posted 6/23/2012 1:07 PM (GMT 0)
potato-
I borrowed "ItsAlwaysSomething" from the title of Gilda Radner's book because... just when I was thinking that my UC was under control...here comes the pathologist's report of low grade dysplasia.

My GI took 55+ tissue samples to biopsy, concentrating on the left side area where the original dysplasia was found. I don't know whether the development of dysplasia was reversed or if the original sample taken was the only occurrence but...I know I'm not going to undergo major surgery unless I'm convinced it's warranted. I fully intend to monitor the situation with frequent colonoscopies.

I think your team is probably surprised that you are doing extensive research. I know my GI seemed taken aback that I had done my homework and knew as much as I did. I learned long ago not to blindly trust a doctor.

I've never taken prednisone but understand that long time use compromises the condition of your "insides" and could affect the success of surgery (from posts I've read on the Ostomy forum).

Recently I spoke to 3 colorectal surgeons from Baystate Medical Center, a prominent Hospital in MA. Two of the surgeons (male and female) said I should definitely have the surgery. A younger surgeon asked me about the level of dysplasia and looked thoughtful, appearing to question the need for immediate surgery.
One of the older docs said that they recommend the j-pouch for people as old as 60-65. When I said I was nearly 70, he said it depended on the individual's physical condition.

I'm happy to have shared info with you and wish you the best! :-)
Posted 6/23/2012 4:11 PM (GMT 0)
Thank you ItsAlwaysSomething. I appreciate everyone's input here and am feeling much more empowered and knowledgeable about the protocols that are being used in traditional medicine for UC. To me it's as valuable as the alternatives we also discuss here.

I wish you the best too!
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