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A new Way of Life is possible!!!

2 weeks ago I had colostomy surgery to permanently divert my bowel. As well as bowel issues I also have Rheumatoid Arthritis (RA)and the past 2 years have been quite a journey with my Clinical Immunologist & Colorectal Surgeon trying to work out what was causing my bowel to cease functioning & constantly prolapsing. Consensus of medical opinion is that RA has contributed to some degree to my connective tissues being weakened in this area & in essence set up a disease process in the rectum causing the nerves and muscles to no longer function. After having 3 major surgeries in 18 months to try and repair constant prolapses it became clear there was no other treatment  options left to us other than the creation of a permanent stoma to bypass the rectum. After each surgery I would also get infection after infection due to the medication I need to take to manage the RA. I even got c diff which is not a fun thing for anyone but even crazier when you have a non-functioning bowel.

Good news is that I am recovering really well post my colostomy surgery & adjusting to a new & interesting ( to say the least) way of life.
I just wanted to encourage you all to know that we maybe Ostomates and we may have additional health issues but at the end of the day we can still choose to have happy fulfilled lives, different lives yes, but fulfilled all the same. A year ago I would have thought a stoma was the end of the world. Today I am so relieved to have a functioning bowel. 3 years ago I was facing the fact that RA was causing radical changes to my  life, the biggest being saying goodbye to my Executive Manager career & the team I led & loved. Today I am medically retired and planning a future of travel and volunteering and writing a book. I am now both  a “Swell Gal” & an ” Ostomate” but those labels don’t & won’t define me.

What will define me is that I have a new life to forge & I’m very excited about finding ways to do that with as much passion & commitment I have given everything prior to RA & my stoma coming along.  I’ll have difficult days like we all do & days when plans & dreams are restricted by health but one thing I know is that if I can focus on counting my blessings on those days, the clouds pass much more quickly.

My biggest blessing is my amazing husband who has walked this journey with me and stands side by side with me today. We have laughed and we have cried over the past couple of years as each health episode has thrown up new challenges. Today though we are smiling, smiling because my stoma is giving me a chance to put the past couple of years behind me, smiling because we have survived, smiling because we are looking forward to a future full of possibilities. We have even managed to laugh at the unpredictability of my stoma over the past couple of days as it’s all still trying to settle down. We can laugh though because we know life is good and it will get even better as the months pass.

Looking forward to hearing others stories. They are all precious & unique & so worth sharing

Sam

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4 responses to “A new Way of Life is possible!!!”

  1. junees says:

    Hi Sam. I’ve just joined Ostomates and your story was first I got to read. thank you so much. but i noticed it was from november last year! are you still around on the site? how you doing these days? cheers J

  2. Samantha says:

    Hi J,

    Thank you so much for your comment. I apologise for not responding sooner. My health kicked up a few challenges from October last year and I am only just getting back on my feet ( albeit with two crutches but that’s another story)

    Having just found your comment this morning it was really encouraging for me to know that you found my little blog here of some help. A week ago I actually started my own blog in the hope of reaching out to others. It will deal with my life with a stoma but also my life managing an idiopathic autoimmune disease. If you’d like to have a look it, the site can be found on this link:
    https://medicalmysterymusings.wordpress.com/
    Please feel free to share it, comment on it and follow along with me if you think it would be of help to you.

    I’d love to hear your story and how you are getting on now too.

    Take care

    Sam

  3. maryanne says:

    Hi I have had a ileostomy just a week ago and I now have a temporary stoma. I have had severe bowel problems for over 3 years now and my doctors decided that this my be the only way to improve my life. Well so far all I can say is that I seem to spend more time in the toilet than I did before if that is possible, I am finding this very hard to deal with and wonder what was worse the constipation or a stoma, feeling very down at the moment. Can anyone tell me if it is true that weight gain is part of having a stoma. I suffer from fibromyalgia that brings with it another set of health problems. I would appreciate it if someone can tell me if the pain I am feeling gets better and how long recovery takes.
    Thanks Mary-Anne

  4. Samantha says:

    Hi Maryanne, I’m so glad you’ve found the Ostomates site. The Forum on here is excellent so please post your story on the forum as many others with ileostomies will then be able to share their experiences with you too.

    I have a colostomy so the output from my stoma (on healthy days anyway) is not as constant as the output from a Ileostomy. You are only a week post surgery and that is so soon to really know how your stoma is going to settle and what the impact will be for you. It is very overwhelming in those early days and feels incredibly unnatural. From my experience my constipation and pain from having severe pelvic floor dysfunction and rectal prolapses ( despite conservative surgery to try and fix them) was far worse than having the stoma. I also have Fibromyalgia and a host of autoimmune diseases including Rheumatoid Arthritis and a rare bone disease. Our bodies just do some amazing things sometimes and are so complex. The medical profession in my opinion do a fantastic job to try their best to help us but at the end of the day we have to live this new lifestyle and manage existing diseases so we have to be in the drivers seat in terms of making the best decision for us.
    Your stoma should not be causing you to put on weight. I actually lost weight after mine as I was no longer constipated and bloated. You will be still quite backed up I would think given the issues you had prior and swollen still from the surgery. Did they remove any of your bowel or is it just a bypass of your large intestine to rest your bowel?
    At the moment you really need to focus on caring for yourself, resting and trying to stay as stress free as possible as your body heals. Given you have Fibromyalgia I wonder if some of your medications are causing you to gain weight. I am on Prednisone and that definitely adds on a few extra kgs.

    Hang on in there, the pain will subside and once you get used to living life a little differently I really hope and pray it opens up a whole new world of good health and wellbeing.

    Take care and ask as many question as you like. Don’t forget to join the forum so you can connect with many other Ostomates as well

    Sam x

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