A year with an ostomy provides challenges and blessings

My name is Jasmine and I was diagnosed in 2016, at the age of 23 going on 24, with stage three colorectal cancer. I am a survivor. I went through multiple surgeries, chemo, radiation, and an ileostomy.

Many people think that having to wear an ileostomy bag would be unpleasant and very difficult. There is some truth in that at first, but I learned on the journey that it was a blessing.

Without an ileostomy, I would have not have been able to have my cancer (tumor-size of a peach) taken out. Without having my cancer out, I might not be here today. There are challenges that I faced such as my bag leaking. There were some nights when I would wake up and the stool would be everywhere. It was very frustrating but I managed to get through. One day I asked myself, “is this life?” Just like anyone else I would feel down. I knew it was ok to go through the emotions but I started praying to God that things would get better. My faith, family, and friends is what got me through.

Once I explained to my treatment team about what was going on, they insisted that I have a nurse come out two-3 days out of the week to help assist with my ostomy. Thanks to Johns Hopkins in Baltimore, they gave me resources as far as where to order good quality bags that were covered by my insurance and I ordered from a supply company. They started by giving me free samples to try and then I started to order them frequently because I liked the quality and they also provided a kit that included scissors, ostomy bag holder, and barrier rings. The scissors were for me to cut the baseplate to get it to the exact size of my stoma so that it could fit properly. This was all new to me but in due time it became the norm.

The barrier rings were great because it is what protects the skin because I had issues with my stool getting on my stoma. Whenever the stool would rub on my stoma it would burn so the rings help protect the stoma and leaks.

I do not regret anything I went through though because I came out a stronger person.

The advice I’d share would be to empty your pouch on a regular schedule to avoid overflows. I ate small frequent meals because I notice when I ate a lot, my bag would fill up. Make sure you’re drinking enough fluids throughout the day as well. I had to Introduce foods to my diet one at a time to determine how it would feel. I always made sure that I had bags everywhere I went.

I had the ileostomy for almost a year and I was told that it did not have to be permanent unless I developed problems down the road. In April of 2017 I was able to get it reversed (taken off).

Some other challenges from the cancer were that I had a section of my rectum removed and one of my ovaries removed. I cannot have kids on my own because both of my Fallopian tubes were removed as well so I will have to go through a surrogate, knowing this, I chose to freeze my eggs.

Being that a part of my rectum was removed I have complications from time to time. I am now 29 and although I still have complications I’m so happy to still be here and share my testimony with others as well as help any others who are encountering the same illness.

My recommendation to others with an ostomy and going through this process would be to be confident in your bag. I never looked at myself as disabled, I wore my bag with pride. There were a few times when I made a design on my bag to make it my own.

One thing I went through was being able to see who my real friends were through this process. I lost some friends in the process but gained even better friends. I had trouble dating due to the fact that people were intimidated by my bag and everything I had to go through.

I do not regret anything I went through though because I came out a stronger person. Life is too short to be down, I survived cancer, I was almost at the end of the road. I was in way too deep to just give up. Do not give up, I want those who see my story to reach out to me if they need to vent. It helps to talk to someone who actually went through the same experience.

With the help of my family real friends, and God I was able to go through this process gracefully.

4 replies
  1. Nellie johnson
    Nellie johnson says:

    I went through a cancer surgery cancer of rectum tumor I had an illestomony it really had me to no end I wanted to die my skin was literally torn off with this flange and pouch leaked everyone that was put on I tried so so many but finally I had have another surgery later dr removed illestomony sId it was to low was reason it was coming loose fromwhen I set down it would open seal and leak I lived in my home except for dr visits I now have colostomy it’s much better but I have hard time dealing with it yet – I’m so,happy you are better now

    Reply
  2. Scott McNeil
    Scott McNeil says:

    I am writing on behalf of my boyfriend Scott. He recently had to get a stoma because of Chrons Disease, and he is unhappy with it. We are struggling to deal with the leaks, the burning, and the odor. I feel that he is just not accepting that this is his life. He tried the reversal and what happen was that the larger intestines and the rectum had to be removed, which again left him with a Stoma. He is very depressed and sadden by this and I would like to know what I can say to make it better. What can I possibly say to make him feel that he would want to live? I read your story and it’s an inspiration.

    Reply

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