I've begun to dread having pouch scopes. It seems like every time the GI goes in he is suspicious of a spot that might be a little inflammed thinking that it might be dysplasia. It's like a roller coaster ride until the pathology reports come back to finally reveal that there is no dysplasia. I know that inflammation can look like dysplasia and that I really shouldn't get uptight until the path results from the biopsy is back - but it still still makes for a very long few days until pathology is back!!

I have a scope on Monday and an EGD at the same time to check for any damage from PSC. It's kind of a up one side and down the other deal. At least this way I will be sedated (the last scope was uncomfortable) - and I can get both done in one day.

I was wondering if anyone else out there gets anxious when it is scope time? Especially if you have history of dysplasia or cancer before colectomy? I am normally not an anxious person so it's a noticeable change when it gets to be scope time!

Does anyone know what the odds of developing dysplasia/cancer in the cuff are? I know it is going to be variable largely depending on history and length of cuff, etc - but are there any resources for this?

I suppose I am just looking for a little bit of reassurance and feedback from my J-Pouch friends.

Rick

Rick,

I could have written your post. I think it is normal to be anxious. The path report seems to take forever. I have a scope next Wednesday with my GI and then a 6 month check with my Oncologist on Friday. Anxious, yes!!

Good luck with your tests.

Jeannie

Hi Rick! I can't say that I understand your worries about the dysplasia, however, I do understand being anxious. I was just in the hospital with stomach pain, severe diarrhea and dehydration, the pain was so similar to the UC pain from long ago... That indeterminate colitis diagnosis from when my colon was removed 21+yrs ago, flashed into my head, not surprisingly. The fear of a Crohn's diagnosis, just a cramp away. I'm sorry you are going thru this again! How is that baby of yours??

Thanks for the encouragement. I will let you know how everthing goes! It's interesting that the GI wants me to take half of the normal dose of GoLytley. I would rather take the enemas, but I guess that's better than taking the full prep!

Rick

Why are you guys getting scoped? I've had my pouch 5 years and only been scoped once. How often do you have this done? Why do you have an oncologist? What am I missing?

Hey bud.. I always did... When The path came back on my colon and it was high level and never came up before I worried about the cuff left in.
Well, you know my story .. every 3 month was scoped and after 8 the dysplasia came back med/high level. I decided not to worry anymore and had the cuff removed (Sick of all the meds and everything that went with it) and end illeo - extreem ya, no more worries PRICELESS LOL!
On a side not though... I knew when they were coming back ... i got the same feeling as uc and when i was sick. So, if you are feeling good its prob a good sign (IMO)
Keep us posted and good luck!

Hi Rick - I'd be nervous too. The odds are that you're fine and there's nothing to worry about - nevertheless, you wouldn't be human if you didn't worry. I can't help you with your questions (obviously you've got great advice from the right people already - Jason!)but I'll be thinking of you on sunday hoping the prep isn't so bad and wishing you sweet dreams as you're sedated on monday for the scopes. Of course I'll have my fingers crossed along with everyone else that your results (and all future results) continue to be cancer free.

Hang in there, try not to worry too much,

Suzanne

The only reason I get anxious before a scope is if they aren't putting me under! I have too many fissures to deal with that kind of trauma.
It's always the waiting that's the hardest with all this stuff, isn't it?
Please let us know what the results are; we'll be thinking about you.

Colorado Guy,

I need to be scoped twice a year because I had colon cancer (only stage 1) at the time of surgery and it is protocol to do the scope to take a biopsy of the remaining cuff as a preventative measure to cancer returning in that small little area. Since I have a history of it and also dysplasia in my colon, I am at higher risk. I think I get to go down to just once per year pretty soon which will be nice.

Thanks for the positive feedback Jason and Suzanne! You are good friends!

Rick

I know how you feel, I always get antsy before my scope. Have been delaying my 7 year check up. Also got cancer from 20 years of UC in 2000. So far GREAT! But had to get a new doctor and he wanted to knock me out he said do enemas, I hate those, I think after all we have been through we just don't like anyone fooling around with the area anymore. I know personally I got through 3 surgeries just fine and strong but now I'm a HUGE BABY! Guess it is like flashbacks or something. Let us know how it goes, I know you'll be just fine! Hang in and tell him to give you a valium or something!

Hi Rick,

Just wanted to wish you luck for Monday. Yes, I always fretted terribly whenever I had a scope coming up so can sympathise.

Hang in there and let us know how it went.

Take care

Shell

Rick, good luck on Monday... hang in there

Rick, I think we all feel that way in different degrees, especially when it comes to dysplasia and cancer. I think the odds are in your favor. I'm sending prayers your way that everything is clear, and hopefully you'll only have to go once a year.

Good Luck,

janna

Rick,
Good luck on the scope, they always made me very nervous until I found a gi that I felt compfortable with, and even then I was nervous..

Good luck today Rick. Let us know how it goes.

Take care.

Shell