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Ulcerative Colitis
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Posted 1/21/2015 3:47 PM (GMT 0)
It's come to that point where it's time for me to visit a surgeon again. I'm following the recommendation of my GI to have another consultation. I had a left hemicolectomy in August of 2013, with a bowel leak happening, temp ostomy then reversal. Since then my colitis has attacked the remaining colon which it never has. I've always had my colitis restricted to my rectum and left side of my colon, the rest has always been clear. My UC is "mild to moderate" with no ulcers but I'm constantly going through phases of diarrhea and not being able to control my bowel movements. We've tried everything in the book to slow down the diarrhea, even using short term vicodin. My GI has come to the end of treatment options. Entyvio was my last option and it did not work. I'm currently on 6MP (150mg) and Prednisone (20mg). I can't be on prednisone forever, which is the one drug that seems to settle things down. I'll be seeing a new surgeon today, he did my sisters J-Pouch 17 years ago and she hasn't seen a doctor since. She's been drug free since her surgery. The only difference she has ever seen is she does go more often during the day but is able to control everything with no issues. I won't be rushing into surgery after my consultation, I'd like to get my body more healthy to handle such a major surgery. My last one took the life right out of me. The bag doesn't scare me as I've been through it already and I know what to expect. I'll update more tonight after my 4pm appt. Here goes nothing
Posted 1/21/2015 4:10 PM (GMT 0)
Best of luck!
Posted 1/21/2015 4:15 PM (GMT 0)
I'm surprised that they didn't take the whole thing out the first time. It's pretty much guaranteed to spread if you were only to remove the "diseased" part. UC effects the whole colon, even when it's not visible. Best of luck.
Posted 1/21/2015 4:17 PM (GMT 0)
Best of luck to you. Sorry that Entyvio did not work for you but hopefully you have comfort knowing you tried all the meds and gave it your best shot before going with surgery.
Posted 1/21/2015 4:22 PM (GMT 0)
someone was recently asking about the availability and advisability of partial colectomy.

did you dr discuss that this might happen?
Posted 1/21/2015 4:24 PM (GMT 0)

garylouisville said...
I'm surprised that they didn't take the whole thing out the first time. It's pretty much guaranteed to spread if you were only to remove the "diseased" part. UC effects the whole colon, even when it's not visible. Best of luck.

the two main reasons we took out the left portion was due to my chronic iron deficiency and the massive amounts of scar tissue and pseudopolyps. I had huge ones and you couldn't really tell the bad ones from the not bad ones. So it was also to eliminate any possible cancer risk in the giant polyps that were there. My iron has been good since surgery and hasn't dropped. My ferritin used to be in the tank constantly. It was a decision we all made together. The surgeon scoped me as well and he felt that at the time due to how well the rest of my colon was that we only do the section. Part of my issues I feel are not entirely due to my Colitis, I fell having the shorter colon has caused some of the problems as well...specifically the incontinence. I can't even use rectal meds anymore because I simply can't hold them in.
Posted 1/21/2015 5:14 PM (GMT 0)
Hang tough, warrior! Ask all the questions you need, don't let em rush you. Do you still feel good about your doc and hospital? Think you are on the right track and have been doing everything possible. Best to you.
Posted 1/21/2015 5:22 PM (GMT 0)

Katmom said...
Hang tough, warrior! Ask all the questions you need, don't let em rush you. Do you still feel good about your doc and hospital? Think you are on the right track and have been doing everything possible. Best to you.

I'll be having my sister come with me to the surgical consultation as the surgeon did her's about 17 years ago before labroscopic surgery was even an option I belive...she had the open surgery in her belly. This is a new surgeon I'm seeing, not the one who did my resection. He seems to have an outstanding track record and has been doing it for 35 years now. My nurse at my GI's office used to be his surgical nurse in the OR and has also performed surgery on her as well. I feel very good about my GI, I have been his patient for the life of my disease and he's gone above and beyond any doctor I've ever dealt with. He also wants me to still get another opinion from a doc he's sending me to at the University of Miami. He's always reported my case at seminars he speaks at to get other opinions
Posted 1/21/2015 10:48 PM (GMT 0)
I had a very thorough consultation today with the new surgeon. He went over the procedure in very good detail, the potential risks etc. He would initially do the surgery entirely laproscopically but he said due to me having previous surgery with the infection he doesn't know what kind of scar tissue etc would be in my abdomen and could potentially need to do an open surgery. He mentioned about getting a specific Prometheus test that would show a certain thing in my body that would show if I'm more prone to Pouchitis. I'm near the 20yr mark with my disease and he mentioned once you pass that mark that some point in my life that I would eventually need surgery for my disease and explained how the cancer risk goes up as the years pass. He would prefer that I be steroid free prior to the surgery which I'm currently reducing now. I need to make a follow up appt with my GI next and go over with him what was discussed.
Posted 1/21/2015 11:54 PM (GMT 0)
That's great. Sounds like he has a good plan for you. I had that test done and it showed bad results. That's one of the reasons I am not very gung-ho about surgery :(
Posted 1/21/2015 11:56 PM (GMT 0)
I don't place too much stock in the Prometheus tests, personally. Their test to differentiate between Crohn's and UC concluded that I don't have IBD...
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