Good day all, i hope I am placing this into the proper area of the forums. I was diagnosed in April 2019 with stage 3 rectal cancer and Lynch syndrome. The only option that was discussed with me by my colorectal surgeon was a total, permanant ileostomy due to having Lynch. I endured radiation and chemo for 6 weeks. Then I had 3 rounds of Folfox treatment ( hard to deal with ) and then, on 9 October 2019, I had my surgery. It was discussed with me that I will also be needing a VRAM flap ( Vertical Rectus Abdominus Musulocutaneous ) flap to close the area from removing the cancer. So now i have no " Left Side " abdominal muscle, and of course my ileostomy goes through my right side abdominal muscle. I am a retired Army veteran, and as such am very used to and did still enjoy a very active lifestyle up until July 2019 when the radiation finaly took its toll on me. I am now cancer free, no lymph nodes affected, pathology clear, no metastasis found and i am greatful. Basically I am looking for anybody here with a VRAM flap and ileostomy i can talk to and pick your brains for advce, info, everything, as my surgeons have not been helpful. They basicly tell me " you cant do anything now except walk short distances, have a nice day. " To me that is the wrong answer. 3 months now after surgery, i walk 8 to 12 miles ( yes, 8 to 12 ) a day, every morning, and am going back to work in a few days as an RV technician. But what else can i do? Anyone with VRAM Flaps, lets talk please. Thanks much, Trevor
Sorry you have had to go through so much, I will be praying for you. I am scheduled for bilateral flap surgery in 49 days to move flaps from my thighs to abdomen to repair hernia mesh removal sights. The doctor say it will be a difficult surgery with a 6 week full recovery and it will affect how I walk, ( not sure how ). Thanks for your post and I look forward to the responses you get that they may help us both.
Thanks again and best of luck
Chris
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Geekyjen,
Thanks for the reply. I will be seeing my doctor on Friday and mention Entyvio. I did not remain paralyzed for more than 2 days, but it was terrible and I was so scared. The doctors just used alot of xanax and other drugs like that to UN paralyze my joints that were being attacked by the remicade. Turns out I have been diagnosed with LUPUS. It is attacking my nervous system. I had ulcerative colitis in 1996 and they had to remove my colon. Had a J pouch for 10 years, until it started failing. I then got a permanent iliosomy, and I suffer from severe chronic diareha, and I dehydrate frequently. I recently had a proctectomy, and that is when the new autoimmune disorder, Lupus, appeared. I have had two hospital stays now because of the blisters and the paralyzing incident. I will be dealing with this forever now. I have just been working on acceptance.
I love this website because of wonderful people like you!
Betty
Good day Chris, I wish you the best of luck in your endeavors as well. I was at first scheduled for the thigh muscle removal and its use, but I had a plastic surgeon as well who decided the day prior to my surgery to change his mind to doing the VRAM flap. That was an interesting appointment, and I was supposed to be bed bound for 8 weeks. That only lasted fr a few days though as i was going stir crazy laying in bed 24 / 7. I couldnt sit for the 8 weeks though which was fine by me, i did alot of standing and walking. Again, best of luck to you as well, hope all goes well and you make a speedy recovery.
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