Your story sounds a lot like mine. I never concered the surgery route. I seemed to manange well didn't really take any medication for years when I felt like a flare I was able to manage by altering my diet and rest until 2015 it really got a hold of me but I still went zip lining while in a full flare and then drove my Mom from Fl to Tx two 10 hour days then flew to NYC to see my daughter I was then going to drive our car back home a 5 hour drive because they had borrowed our car but I ended up having my daughter drive me so she then knew something was wrong (I really tried hiding it from everyone) The next day I ended up in ER being admitted for a few days and by the end of that month I was doing much better. The dr I had seen said I didn't need to be scoped for another 5 to 10 years and I didn't think he really knew much about
uc so i found a different dr she scoped my the following year 2016 and I ended up being so frail that she had to put in 13 clips because I ripped in several areas. Last year though the scope seemed fine then she told me she was moving and I had to find a new dr so I went an hour and a half from home saw him and scheduled the scope for May 9th this year. He did say he could tell I've had uc for a long time (over 20 years) but he didn't seem concerned. waited for the results after 2 weeks I called and found out they sent the results out, concerned me a little but then when two more weeks passed I wasn't concerned because I thought no way anything is showing up taking that long get on the plane to go back to TX to take my Mom back to FL turn phone in airplane mode at 3:00 and when we land see I missed a call at 3:06 from my dr had to wait another day to call then wait all day knowing something is up he finally called me at 5:30 he apologized several times for having to give me this news and over the phone. I don't go back home until Aug 22 he said that was fine to wait to see surgeon he was going to contact and set things up and I'll probably have another scope around that time and go from there. I'm just in shock because I read all the posts on here and think I felt lucky I wasn't as bad in hindsite I guess I was in denial a lot I worked in an office where I had a bathroom right there so I never really thought about
how much I was going and how I would always be aware of where bathrooms were but it didn't stop me from doing much I would travel, I coached high school cheerleading and had to travel by bus for games and I thought now way will I ever need the surgery so with this I'm in shock I can't process it.
Sorry for the long post I guess I'm so privite I can't bring myself to talk to my husband and family about
it I've told them but have downplayed it and downplayed how I'm feeling. I've told my sister and made her swear not to tell her husband or family I'm not one that likes people saying poor you and right now I can't deal with that I just need facts and what people have gone through and how long the hospital and recovery is and what all is involved with the surgery.
Thank you all for your help.
Hi Coral -
So, others have mentioned my story. Colonoscopies had been disclosing abnormal cells for me for about 1 1/2- 2 years, random abnormal cells, so I was having colonoscopies every 6 months. Last Fall suddenly there was a stricture where there had been none only 6 months before, so I quickly scheduled my surgery.
My GI (and my whole medical team) is associated with Yale.
My GI had been urging me to talk with the surgeon for about 2 years and I resisted. My UC was only mildly active and I felt great! And I, like you, had plans - I was leading a tour group overseas on a vacation tour last Fall! So, I did that. And then I traveled a lot within this country, because my FIL was ill and then died. And six weeks before my surgery I was in a 5K (I walked, I didn't run, lol) So in retrospect I am glad I did all those things, but, BUT..... if I'd had the surgery earlier, could I have avoided these 6 months of chemo? I will always wonder, though I am not beating myself up about it.
I would say, talk to your GI, talk with a surgeon, maybe an oncologist? Ask if a CT scan would be helpful? I did a HIAA 5 test a year ago for the oncologist (urine collection after a specific diet for a few days) and it ruled out carcinoid syndrome, but did not find the existing adenomatous cancer... so that was a false reassurance for me.
I had always assumed/planned that I would not need surgery, that my UC would be addressed by ever newer meds. I REALLY resisted. But.... it's not bad at all. I love having my breakfast with 2-3 cups of coffee and not needing the bathroom for a few hours! And my list of "safe foods" keeps expanding to things I have not eaten in a decade or two!
If I can be of help, please ask away, and/or tag me in a post. I am keeping you in my thoughts as you work through that feeling of shock. (I remember that feeling well!)
20 years also have Raynaud's phenomeenon andd many allergies
Lialda 4, 1.2 g daily
(Prior Asacol HD 800 mg 3x day)
Allergic to Wheat, Dairy, Tree fruits, Tree nuts, Honey, Onions
Potassium 20 meq 3x a day
Zyrtec, Singular daily
Azelastine nose spray 2x a day
Multi vitamin daily
Post Edited (Coral) : 6/16/2018 3:22:37 PM (GMT-6)