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Living with an Ileostomy

Posted by Slkb, on Tue Mar 12, 2019 7:36 pm

I was diagnosed with Stage 3 rectal cancer April of 2018. My Dr. suggested that I get a colonoscopy since I was going to be 50 in 2019. I had no symptoms, this was just a routine. When the Dr. told me it was cancer we were all shocked. I went through 5 weeks of radiation and Chemo treatments and was told that my rectum would need to be removed and that I would need to have a permanent colostomy. I have accepted that my colostomy will always be a part of my life and I have prayed that God would give me peace. It was not easy at first getting used to it and I have experience a lot of anxiety dealing with the Ostomy and I am still dealing with finding the appliance that works best for me.  Ostomy does not define me as a person.  It has saved my life. It was a long journey and there were many set backs, but you have to keep a positive attitude and keep fighting! You got this!!! 

Reply by Schweetdecember, on Tue Mar 12, 2019 9:35 pm

Hi Staying Strong,           

My heart goes out to you!  My best friend started with a cholostemy bag, that was reversed only to wake up with an ileostomy bag.  That just recently was reversed.  It about killed her.  She is 74.  My suggestion for you is surround yourself with supportive people that are also compassionate.  Watch for dehydration, and have blood work done to keep up on your potassium, magnesium, iron, and sodium levels.  Drink Gatorade.  I have been her caretaker for the last ten months and have watched her suffer.  You can do this.  Find a local ileostomy group to join.  Your doctor or hospital should be able to point you in the right direction.  We have a lot of extra supplies, if you contact me I can arrange to send you what you might need. Just because you have an ileostomy doesn't mean know one would want you.  Anyone that can't get passed that is not for you.  Don't give up.  My friend feels terrible about her stomachs area, but I think she looks beautiful still.  I hope I was able to provide you some hope.  She had colon cancer and is allergic to the chemotherapy drugs, so now it's all up to time.

Last edited by Schweetdecember on Thu Mar 14, 2019 12:21 am; edited 1 time in total
Reply by Slkb, on Tue Mar 12, 2019 10:46 pm

I was actually responding to someone post. I will be done with my Chemo pills in May.  They were able to remove all my cancer with surgery and Chemo and Radiation before the surgery, I am taking the Chemo pills to make sure that there are not any cancer cells laying dormant. My margins were clear right after my surgery. I had several serptbacks and I also had a severe reaction to Chemo transfusions where my throat was closing. My Oncologist would not allow me to have anymore transfusions. I have a colostomy, not a illostomy and I don’t think the supplies are the same.

i have an awesome support system from family and friends.

Reply by JudiA, on Wed Mar 13, 2019 10:48 am

I have had mine since 1989!  I did try the J-pouch and had worse synptoms than the UC with cramping and urgency.  Since then I have had many other surgeries - mostly revisions due to blockages from scar tissue.  They even had to rebuild my bladder twice. During all that I was married to a kind and understanding man.  He however turned on me and I had to leave him.  As far as intimacy goes, we adapted until he decided I didn't deserve him o


Judir being made love to.  It tore me up pretty bad after 28 years together.  There has been no one since. So basically I am in the same boat as you with the opposite sex.  But at 70, that part of my life is now in the past. It has been 7 years without a man in my life, and I am comfortable with that for now.  I have male friends, some know my medical history and many don't.

You are a survivor, so take pride in that. Find ways to be kind and loving and love will find you!


Reply by Silveradokid, on Thu Mar 14, 2019 9:00 pm

Hi StayingStrong. I think acceptance of one's bag is a matter of perspective. I've had mine since November of 2016. It has given me my life back and I'm forever humbled and grateful to modern medicine. The ulcerative colitis was so bad in the final stages that I wasn't able to even leave my house for 2 years.  The pain was relentless. Several times I contemplated ending my life. Now I embrace life with a passion. I hope you will, too. Epecially when you're able to appreciate the difference between "before" and "after." All the best to you! - Silveradokid.

Reply by BayGal, on Tue Mar 19, 2019 8:47 am

HI I have been living with Ulteritive Colitis sine 2003 after I had my first daughter I had my bowel out in April 2016 and I have that for life. I was a single mum for 8  years and I have found love again..... yes I was afriad to show my body at first but the man I am with it did not bother him at all we have been dating for 8 months now and he even get involve with me when I am changing it just incase there is a time that I can'y do it as I have had hurnia and it has come back again for the 3rd time and I have to under go another operation to move my bag from my righ side to my left side...... so love yourself for who you are, and always remember there are worse people than you out there.... I look at life diffrent as I was close to death twice and now I live each day the way I want..... and take 1 day at a time like I did and you will be very suprise love will find you it will take time but trust me it will come to you.......

Reply by cpk, on Tue Mar 19, 2019 5:11 pm

Hello StayingStrong,

I have an ileostomy for 12 years and I'm so glad I had it. I can do anything I need and you can too.

I had ulcer colitis for many years with pain and bleeding and now I feel like a new man.  Let's talk about it,   Check me out for one of the 12 at Dayton, OH


Reply by Bigboredave, on Wed Apr 17, 2019 2:02 pm
Be strong, no matter how bad things seem they will get better. I have had my ileostomy since July of 1978. Been married three times, had numerous relationships, worked construction, have two children, shoot, hunt fish, swim, bike, do about anything think I want. You may not win every battle but you will win the war if you stay the course.
Reply by Puppyluv56, on Wed Apr 17, 2019 8:05 pm

Great advise! An Ostomy should never define us! 

Live life as you would have without an Ostomy and laugh at the mishaps! They will be funny years later anyway so laugh now!


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