foods55 Member Posts: 35 Member

Hello, I have rectal cancer and was operated on 2/13/2015 and underwent a proctocolectomy  ended with a pernament ileostomy and chemo for a year. The colon-rectal surgeon was unable to get a margin around the tumor  anterirorly and on the right lateral aspect because of involvement of the vagina, bladder and pelvic sidewall. Had PET/Cat Scan on 10/06/2015 and found to have mural thickening and metabolic actity at the anorectal junction. MRI on 11/03/2015 revealed a 3.5 cm lobulted mass extending superiorly from the area of the staple line with recurrent rectal neoplasia. The mass extends to the margins of the vaginal cuff and directly contacts loops of small bowel in the lower pelvis with resultant enterorectal fistula.

I have to wear a pad because though most of my stool passes out of my stoma however some of it passes out of my rectum and have some mild bleeding.  I will have both surgeons gynecologic/oncologist and the colon-rectal surgeon doing surgery on January 20th because that is the first available date to coordinate the surgery.

In the last week I've been having a lot of leakage from the the rectal area and having pain in abdominal area every time I eat a meal.  I am still getting small amounts of liquid and stool input into my ostomy bag.  It doesn't seem to get better and have called the Oncology nurse navigator.  She said because of my tumor I'll have leakage until I have surgery and they don't seem to know why I'm having pain in my abdominal area. She did call the nurse that directly works with the colon sugeon and she didn't give me much advice on what to do. My surgeon is in surgery until 2:30 pm and the nurse wil try to talk with him about the problems I'm having and what to do until I have surgery.

I'm trying to eat a good diet and drink fluids so I don't get dehydrated and taking it easy.  I'm frustrated I don't know exactly what foods and liquid would help except water, gatorade, and ensure. Also, trying to eat a high protein foods but I can bearly eat enough and drink enough liquids to keep me as healthy as I can until surgery which is a good 2 months away.  I'm afraid I'm not going to make it until my surgery date and will have to in for emergency surgery.  I appreciate if anybody can give me some advice or has gone through this that can help me out.



  • Trubrit
    Trubrit Member Posts: 5,754 Member
    My word!

    You've had a rough ride. I am sorry to hear your story, but alas, too many journey this dreadful road. 

    I can't help you with your question, but wanted you to know that I am glad you posted here, and hope that someone will pop on soon that can help you. 

    Sue - Trubrit

  • DD3
    DD3 Member Posts: 136 Member
    Oh boy

    my wife had a ileostomy (temporary) for six months.  She had slight and every so often discharge.  Never like you have explained.  It sounds like you are doing everything right in regards to diet and fluids.  My wife comsumed Boost drinks for protien and etc.  Water and tea kept her hydrated.  Food as you probably know low residual is the ticket.  Surgeons seem to be great with the surgery portion not so much with the care and maintenance of the otsomy.  My wife had a great Ostomy nurse who provided a plethora of information in regards to care and diet.  She help my wife so much.  Do you have access to a ostomy nurse?  Might try there if you do.  I wish I had better advice for you