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New Member...Dyspasia Questions

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Ulcerative Colitis
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Posted 4/16/2008 11:34 AM (GMT 0)
Hi, I am bellski. I just found this website. So, I decided to try it. I feel like I could use someone to talk to that knows more than I do. I was recently diagnosed with ulcerative colitis. also, there is indeterminate dysplasia. To be exact, the report said about the dysplsia: although the cytological changes are suspicious for dysplasia in a vew small foci, they are identified in the area with extensive active inflammation, p?cluding a difinitive assessment. Close follow up with biopsy is recommended. So, I haven't gone back for the next biopsies yet, the doc wants to wait until the inflammation is most likely gone. So, in June. I am scared because I read that if dysplasia and uc, then the colon needs to be removed. The doctor told me, I have indeterminate Dysplasia but did agree if it is dysplasia, we would have to consider that. My husband wants to take me to mayo clinic for a second opinion, I think I only want to go if it is dyspasia. What are your thoughts? My ulcerative colitis is just in the lower section, beginning stages. I appreciate any advice, this is all new to me. Thank You.

Post Edited By Moderator (tjf) : 4/16/2008 5:47:55 AM (GMT-6)

Posted 4/16/2008 11:48 AM (GMT 0)
Hi and Welcome! I added a title to your post. Hopefully that will help you get more answers!
Posted 4/16/2008 11:51 AM (GMT 0)
Thank you!
Posted 4/16/2008 12:26 PM (GMT 0)
Good morning, and welcome to HealingWell, bellski. I'm really sorry you're sick, but so glad you found us.

What your lab report means is that some of the cells were suspicious and may have early pre-cancerous changes. Because severe inflammation can also cause cells to look this way, they couldn't determine for sure. I'm assuming your doctor has you on medication to reduce the inflammation. In many cases this will clear things up.

We have several people on this board who have had their colons removed, and hopefully they will come by with words of wisdom for you. They are all very glad they had the surgery because they feel so much better now.

If surgery seems indicated, a second opinion is always appropriate. It's a big surgery, and you do need to be sure, plus you'll want to find a colo-rectal surgeon who has experience with the procedure so you can get the best outcome.

I'll be sending healing thoughts your way.
Posted 4/16/2008 12:35 PM (GMT 0)
Hi, and I am so sorry to hear that you are experiencing all the effects of UC. I agree with Judy, for you it is a wait and see. I would try (and I know it is hard) not to think about it until June. It may be just the inflammation. But if it is dysplesia, that means you are in the early stages of your body making cancer cells......you don't have cancer, but you are headed that way. I know if it were me, I have dealt with this disease enough, I am not about to deal with colon cancer too. Best to rid your body of it before it gets to that point. I will be thinking good thought for you and hope that the dysplesia disappears with your next biopsy.
Posted 4/16/2008 1:21 PM (GMT 0)
I am sorry to hear of your diagnosis and hope this turns out to be nothing more than inflammation. However, if you would like to meet others who had surgery due to dysplasia then I recommend you visit www.j-pouch.org I am sure those that have gone down this path before you can answer your questions related to the decision making process for this diagnosis.

Sue
Posted 4/16/2008 2:21 PM (GMT 0)
Thank you to Judylyn, lemonhead and suebear for your response.  I am so glad to have found this website.  It is definately a blessing to have this resource.  It takes some of my anxiety away.  I am on asacol, and cymbalta to help keep my stress under control.  I was on canasa but do not need it now as my symptoms have subsided.  I forgot to ask my doctor if it would be a good idea to take acidopholis daily.  Does anyone have an opinion on that?  Thanks again, you are all so helpful! 

Sincerely,

Bellski

Posted 4/16/2008 5:10 PM (GMT 0)
Hey Bellski, This month marks one year since I found out that I had high grade dysplasia in my colon. I know how scary it is to be given that diagnosis. I had had colitis for years and years but I kept it under control or so I thought. Naturally I didn’t want to accept having my colon taken out so I had another colonoscopy, a sigmoidoscopy, a CAT scan and 4 other opinions. I really felt all the doctors had it in for me. Last summer I had a complete colectomy because I didn’t want to have cancer. I had watched my parents die of cancer in their early fifties. After the surgery the doctors told me no cancer was found in my colon. Now my life has changed for ever. But I don’t take powerful medications, I don’t have gut pains, bloody diarrhea and I don’t live in fear I will not make it to the restroom in time. I think it is a good idea to get second or maybe even third opinions-just for your peace of mind.
Jennie
Posted 4/16/2008 7:26 PM (GMT 0)
Thanks Jennie,  Do you think I should wait to see what the biopsy shows in June and if it is nothing, then don't worry about a second opinion?  I was thinking maybe it was just necessary for more opinions if it comes back as dysplasia for sure.  There's always the chance I don't have it.  Also, I hope this is not too personal, is it hard having to have the bag and change it?  My sisters friend has it and she is happy and feels better.  My attitude right now is, if I have to do it, it will be O.K.  Much worse could happen.  I wish you continued good health.  Thanks again,  Bellski

Posted 4/16/2008 7:37 PM (GMT 0)

Hi Bellski, welcome to HealingWell.  My daughter has similar issues as you.  During her last flare in October 2007, they saw dysplasia during her colonoscopy. The doctor hoped to give her another colonoscopy this spring when she was in remission. Unfortunately she started flaring in March. It looks like the 6-mp isn't working for her (nor has anything else she tried). She seems steroid dependent which the doctor doesn't like. The doctor wanted to do another colonoscopy to see if her dysplasia has increased. He wanted her to try Remicade but felt that if the colonoscopy showed more dysplasia, it was better to see a surgeon (his reasoning is Remicade would be a temporary fix because the concern of dysplasia would override any remission). He took over 100 biopsies. The pathologist felt that the dysplasia was from the inflammation of the flare. She has no polyps or tumors. So she is trying Remicade (whether it was her first treatment or the steroids kicking in, she is feeling better). When she is back in remission, we plan on seeing a surgeon. We'd rather get as much information as possible about surgery while she is healthier rather than have to make an emergency decision. Her GI will do as many tests as needed to make sure she has UC (which it looks like) rather than Crohns to help make an educated decision about surgery.  

Try to just get better. This disease can be overwhelming. There is so much information yet at the same time it feels as if there is no answer. This forum has been a blessing for us.

Posted 4/16/2008 7:46 PM (GMT 0)
Thank you Bennie, I will keep your daughter in my prayers as well as all of us. 

Bellski

Posted 4/17/2008 7:04 PM (GMT 0)
Hey bellski,
This is just my opinion, but I would get another opinion-- just because. If I wouldn't have had the other opinions I would have fretted constantly. I think some of us with UC tend to stress out a lot any way. As for as the bag goes, it's not bad at all. I guess I'm lucky because I don't have many problems. And like I said before---no scares about not finding a restroom in time! I will keep you in my prayers.
Jennie
Posted 4/17/2008 7:26 PM (GMT 0)

Thanks Jennie, I will probably go to Mayo Clinic this summer for a second opinion even if there is no signs of dysplasia with the next biopsies.  You have been so helpful.  I was also reading this morning on this site how Mayo Clinic is so good with this.  I just am not a fan of going to doctors but I need to get used to it.  Thanks again!  I am so thrilled to have you all to talk to.  Thanks for the prayers too!  I will keep you in my prayers too.  I'll keep in touch,

Bellski

Posted 4/19/2008 5:15 AM (GMT 0)
HI Bellski. 

I am dealing with the same exact thing.  In nov I was hospitalized in the worst flare I'd ever had.  Well my GI was on vacation,  so an oncall GI saw me in the hospital.  He did a flex sig, and took a few biopsys at that time.   And sure enough,  one of the biopsys showed possible dysplasia.   However it "favored" reactive changes from the severe inflammation I was experiencing at the time.  When I saw the surgeon,  he wanted to wait to do surgery, because the Remicade was working so well.   But he also said,  if I truly have dysplasia,  he would recommend surgery.    My regular GI was kind of upset that the other doc did biopsys when I was flaring so bad.   He said most likely it is the inflammation,  but we do need to now do a followup colonoscopy when not flaring,  in a year from the flex sig to be sure there is no dysplasia.  He said that there was no real reason for him to do biopsys,  because we already knew I had UC and that I was in a flare...my regular GI  would not of done the biopsys.  Oh well,  we are pretty sure it should be clear for the next colonoscopy.   :-) 

Posted 4/19/2008 10:42 PM (GMT 0)
Hi Christie, Thanks for sharing your experience.  I find it interesting that your doctor is waiting a year to do more biopsies and mine is doing a flexsig and biopsies in June which will only be 3 months from my colonoscopy.  This is all so new to me.  Waiting is the hard part for me.  I am feeling so much better and the medicine is working for me so I'm thankful.  Good luck with everything.  I hope it was just inflammation for both of us.  Take Care, Bellski

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