I am a complex patient. I have anorectal issues for 12 years, lost my spleen due to a colonic manometry, and am now immunocompromised. At that time, 7 years ago, I was also diagnosed with ulcerative colitis. Fast forward, and my colitis is worse, now with crypt changes and celiac on top. Biologics when you already have no spleen is not a great idea. I have been offered a temporary ileostomy (which would be permanent), but that is no solution, given I would still have my diseased colon and rectal issues. It seems not having a spleen when undergoing surgery puts you at greater risk if there is a leak from surgery. I have had a second opinion from Cleveland Clinic, who suggested three surgeries over the course of a year and suggested moving there for a year, which would be rather difficult since I live in my home in MA. I am at a loss as to how I can't find the right help in MA. I have seen the pelvic floor doctor at Mass General and the colorectal doctor at Brigham's, yet both said to get a temporary. Is there anyone here who had their colon and rectum removed and closed who was immunocompromised before surgery? Any suggestions for great surgeons in Boston? It used to be my pelvic floor anorectal issues were worse than the colitis, but now the colitis seems to have taken over, and adding in celiac, I am a complex patient. For those who traveled to Cleveland Clinic, how long did you stay and how did you access help when you returned home?
I have a great colorectal surgeon at Cleveland Clinic. The doctors and staff are accustomed to patients not living in the area and can work with you accordingly. I know for myself that if I moved from the area, I would still come back to this surgeon if necessary.
Feel free to message me questions about CC, the area, surgeons, etc.
MeetAnOstoMate is a remarkable community of 41,407 members.
“Every morning with my coffee, I read here and feel wrapped in warmth - I hardly post, but it still feels like family.”
“Our oncologist literally wrote down the link; they said more patients need this website.”
“This place pulled me out of the dark. I went from lurking to living again.”
“At 3am, someone’s awake somewhere in the world. I’m never alone here.”
Good Evening Bob and All,
I checked my email and saw new postings. That's when I usually visit the site. I've recently met a few others who have developed UC and have made contact with them. I've directed them to this site. I also use the site to look up concerns they or I have. This site has been unusually helpful to me. I have seen questions and concerns of others posted. After I scroll down and see similar comments that I would make, I don't comment. As for social media interest, I have a Facebook account (due to work). As of this date, I have one Facebook Friend (and don't even know how that happened). I find the content here more relevant to my life. Then again, I'm old school. If I want to see how a friend is doing I just make a call.
Stay Safe and Sane all. Back to the hockey game,
SharkFan