I was diagnosed with UC in september 2006 when I was 19 yrs old and have since then tried many different treatments. I am currently on remicade but just started a flare which did not get any better with the infusion. I was just released from the hospital last week and I was given many different choices of what I can do. I was given the option of having a total colectomy but I do not know much about it or know anyone who has had it. I am tired of the pains, medications and steriods but I am also a little scared about the surgery. I have never talked to anyone who has had UC and this is the first time I have written on here. Please share any comments because I would like to hear from people who have already gone through this first hand.
Reply posted for Swimming Girl.
I will be starting back on Humira in July. We just had a change of insurance, so it has to be approved again. My doctor is going to try me just on Humira to see how that goes. He said that we may eventually add back the Imuran.
I am heading back to work today.....life is starting to get back to normal. My husband has already noticed a huge change in my energy level, and my mood. He says that I seem like my old self again!!
Good Luck with everything!!
Reply posted for Kyla.
Kudos! I hope you can enjoy wearing a swim suit now. I'm so happy to be able to wear something other than big loose shirts that hid my puffiness.
The dysplasia that necessitated my colectomy was caused by 13 years of Crohn's colitis. I'm so thankful to be feeling good, but I know I need preventive therapy to preempt the Crohn's from coming back elsewhere. What kind of therapy on you using? Thanks for your thoughts.
In the meantime, I'm going to have a salad.
Reply posted for Swimming Girl.
Wow, our stories sound so similar. I had a colectomy on May13th. I ended up getting a bad infection and had a second surgery on May 20th to "wash" everything out. I was also "reconnected" at the time of my first surgery. I was so thankful. I ended up spending a total of 16 days in the hospital. My surgery was Crohn's related
I am also amazed that I am pain free, have one BM a day, and can actaully eat lettuce. And, on another positive note...I no longer look like I'm pregnant.
I have one tiny spot on my incision to heal...hoping it will be healed by next Saturday...in time to go on vacation to the beach!
Reply posted for OrtizJ.
I just had a colectomy on May 29th. Now that I'm off of the painkillers, I can't believe how much better I feel. I can eat whatever I want - even lettuce! - and somehow only have one bowel movement a day. No diarrhea, no gassiness, and my huge bloated belly is finally gone. It's pretty great. I was way fortunate in that the surgeon could save a little of my sigmoid colon and the rectum, so I woke up already attached. Doubly great.
I was lucky in some respects - I had no choice but to have a colectomy, as a colonoscopy in April revealed a growing mass, and biopsies from it and several other parts of my colon were abnormal (showing dyspasia) indicating that colon cancer was right around the corner. I was scared to death. The doctors told me I had to have the colon out within 30 days.
Cancer or no, however, I would have seriously considered a colectomy anyways if I'd known how much better I feel.
Very best of luck with your decision. Feel free to respond if you have any questions about the surgery. I'm still recovering, but it's not as hard as I thought. The anticipation of it all was the hardest part.
Reply posted for OrtizJ.
I had a total colectomy on May 20th. I currently have a Temporary Ileostomy. My take down ( reconnect surgery) is on June 24th. This is only five weeks from my first surgery. Here are a couple of links that I think could really help you in making your decision. It is not an easy road, but I think the end results will be worth it. Good Luck and God Bless!
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