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DALM (dyplasia) and 20years queiscent disease, and the future...support needed, desperately

Thu, January 29, 2015 10:16 AM

Hi everyone,

I am rapid cycling the seven stages of grief. I want to put my story out - basically I guess as part of my processing but the questions will be at the bottom. All input appreciated...I am just kinda lost, feel guilty, angry -- you name it.

And have had quiescient UC since 1995. I was put on Asacol 400mg daily and basically told - you have to manage the symptoms and don't worry. Now I have a anal retentive (morbid attempt at humor) GI, who the FIRST in 20 years to say this. My mind is just blown -- looking at path there was chronic inflammation everywhere each previous no one ever said pancolitis. I asked repeatedly. So this one says, you have pancolitis since at least 2007. I asked to see the path he showed me. The guy that did it in 2007 didn't want to refill Meds said it was IBS changes didn't think I had uc. In 2005, had the backwash ileitis....first time ever past splenic flexur and I was sick. Asked 2005 guy and 2007 guy if I had pancolitis both said no. 2012 guy, well I didn't ask because, well two said I didn't have pancolitis. Now this one said I do and he works closely with Vandy IBD specialist. For the first time since the 2005 colo, normal mucosa on quadruple the meds I had been given before (now Lialda 4.8g).

thumprhare
Joined Jan 29, 2015

Thu, January 29, 2015 10:16 AM

Reply posted for thumprhare.

BUT a 11mm sessile serrated polyp that had peripolyp biopsies with same dysplasia were found near the opening of my appendix...DALM (dysplastic adenoma-like lesion of mass). It was read by a GI pathologist at vanderbilt, so I believe it is real. Here is my issue(s)...

Why bother with a chromoendoscopy when it seems to all point to the safest option as being proctocolectomy with IPAA?
How long does it take from time of dx to surgery?
What is an IPAA really like immediately post op, a few months etc?
Any sexual dysfunction (I am female)?
If you got the IPAA for dyplasia or cancer, how is life different? (I only say this because I have been SICK, so I get how severe disease this surgery would be a godsend. For me it is so hard because I have been so lucky to now -- I can eat what I want (but dairy), and can do what I want and I have felt so generally uneffected by this disease...)

So I am asking (begging really) for some hope. I have three babies - 6yo, 4yo, and 11 months. I don't know lifting restrictions. How long I will be down and out? Am I going to have a normal mommy relationship with them? (meaning not having to go to the bathroom every hour).

I apologize for all the rambling, but I am so overwhelmed. Thank you for listening....

thumprhare
Joined Jan 29, 2015

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