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    What It’s Really Like Living With A Stoma

    Caz had a stoma put in after a botched surgery for her stomach problems. This is her life living with a stoma.

    Living With A Stoma Overview

    It’s hard to believe that I’ve had a stoma for nearly 3 years now. It doesn’t feel like that long at all. Since my first surgery, my health has gone down the toilet, a quite fitting expression for my situation. I wish it hadn’t happened this way, but there’s no benefit to living in the past or growing bitter. This is how I got my stoma and how I deal with living with one.

    “you’re too young for anything to be wrong”

    The Start of My Tummy Troubles

    My problems started at 19, when almost overnight I developed constipation. At first, I thought the complications came from the iron supplements I’d recently been prescribed, so I immediately stopped taking them. But the problem persisted.

    Aside from anemia, I was an otherwise healthy girl — average weight, a decent job, a boyfriend I adored, a social life I enjoyed. I’d never experienced constipation before, so I wasn’t sure what to do. I took laxatives and went to my primary care doctor as soon as I could.

    Over the years, I went to many doctors and treatment centers. Time and time again, I was fobbed off. To my detriment, the doctor’s would say “drink more water”; “eat more fiber”; “it’s all in your head”; “you’re too young for anything to be wrong”; “everyone gets a little constipated from time to time”‘ “stop trying to find problems that aren’t there”, and even “try eating several daily kiwis”.

    My First Surgery and Some Complications

    I tried anything and everything to cure my stomach troubles, with no luck. Without laxatives, nothing happened. At all. Exhaustion and frustration followed me around. Because I was so embarrassed about my condition, I didn’t tell anyone but my parents about my troubles.

    Fast forward and a primary care doctor finally listened to me and agreed to run specific tests I requested. These tests showed pelvic floor dysfunction and slow transit. In the hopes of helping my constipation, I paid for my first surgery. It didn’t go well, and this became the turning point for my health going downhill.

    After the surgery, nothing worked in the toileting department; even ridiculously high doses of laxatives didn’t help.  A few months later, my doctor told me I needed a stoma. I received a loop ileostomy, where a loop of the small intestine is brought out through a cut in the side of the abdomen. 

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    However, my large bowel was still causing problems. The pain and distention were becoming unbearable. Because of this, I had a colectomy procedure, where my large intestine was removed. During the surgery, they discovered my large bowel was significantly dilated and looked dead, with no peristalsis.

    The Early Stoma Days

    My stoma is now an end ileostomy, meaning my bag and I need to be best buddies because he’s with me for life. Seeing and saying hello to your small bowel every day isn’t something most people experience. At first, I was horrified. The stoma starts out very large, taking a few weeks to shrink and settle.

    caz's stoma bag
    Caz with her stoma bag.

    Finding a way to accept my stoma was challenging. I was angry that my botched first operation led to this. But then time went by, and what started out as strange became normal, and what was initially difficult eventually became routine.

    Some patients get little or no warning they’re getting a stoma. I found out a few weeks beforehand, yet it never properly sank in. Even as I drove home from the hospital with my stoma supplies resting at my feet, it felt unreal.

    Having a stoma doesn’t just change you physically. Other adjustments, such as with travel and insurance, need to take place. It can also have a deteriorating effect on your mental health, inducing anxiety, depression, stress, and changes in body image. 

    Spanners In The Works

    Having a stoma is different for everyone. While some people will go problem-free for many years, others have more regular issues. In addition, many people may have other additional conditions to deal with. I now suffer from chronic pain, pernicious anemia, osteopenia, undifferentiated connective tissue disease, Raynaud’s, regular migraines, asthma, chronic fatigue, and fibromyalgia.

    My insides like to dance the tango. I’ve had numerous problems with my small bowel twisting and the stoma becoming obstructed. Sometimes, I’ve dealt with this myself at home with a catheter tube, but many times I’ve rushed to the emergency room in agony. During my last admission three months ago, when my small bowel was doing the Twist to a silent disco soundtrack, I ended up needing emergency surgery. Without the surgery, doctors said I could have died. I’ve had 6 surgeries now and I’m awaiting a further diagnostic laparoscopy.

    surgery for inserting stoma

    Although it puts me on edge to know another problem could arise at any time, my stoma has behaved since the last operation. I don’t say this to scare anyone, but I think it’s important to show the reality of stoma life.

    I have had problems with leaks — once even waking at 3 am, crying as I washed my pajamas and bedding and rubbing my skin raw in the shower. As horrible as leaks are, you learn to deal with them and take them in stride. My weight has dropped after surgery since I’ve had to be more careful with my diet, especially with items like fruit skins. However, I’ve been quite lucky and haven’t had too many problems, although my stoma doesn’t seem to like any meat other than lean chicken. I’m missing some cottage pie!

    Looking for silver linings

    These past eleven years, the last three to four in particular, have been a process of learning and growing. I now celebrate small achievements and take joy in day-to-day pleasures. I’ve learned to trust my body and instincts and to care less about what others think or what society expects of me. We are more than our illnesses or stoma bags. Those things don’t define us.

    silver linings with a stoma

    The years of fighting for my health have made me more assertive and I’ve become far stronger because of what I’ve faced. I’ve survived depression, pain, sickness, and losing friends and work. Of course, others have far worse things to contend with, but I’ve learned we can’t compare ourselves like that. Those of us with invisible illnesses are entitled to feel however we feel, without comparison or guilt. 

    Living with a stoma can make planning difficult and it’s a challenge to be spontaneous. While striking a balance is challenging, it’s also important. You can still enjoy the things you’d like to do — whether that’s traveling, swimming or something else — with a little extra preparation and a dose of flexibility.

    The online world has been a blessing. It’s opened up new opportunities when others have been taken away, and I have made several valuable friendships. I run a blog, InvisiblyMe, and do what I can to provide support and raise awareness. It may not sound like much, but to me, it means the world. Also, remember that there’s support out there! When I first had my stoma put in, online support groups on Facebook were priceless.

    I still struggle, but I’ve done well by prioritizing self-care, accepting my sickness and managing my illnesses and symptoms properly. Being positive isn’t my default setting, but it’s something I constantly work at. With my illness and stoma, life hasn’t ever been what I expected. But with small steps, a little support, and a lot of self-compassion, it’s possible to live the best life you can in the situation you’re in, to live fiercely and grow stronger, no matter what happens next.

    Do you have a story about stoma you’d like to share?

    Share your experience in the comments or email us at info@painresource.com.
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    4 COMMENTS

    1. You are a warrior, and your story looks a bit like my own. I had suffered constipation and abdominal pain for many years, being told the same from doctors: drink more water, eat more fiber, exercise more even though I literally was a health nut, runner and vegetarian….then take laxatives, your colon looks like an 80 year old’s colon in that it is full and trying to move with very sluggish motility (as seen on ultrasound) at the age of 25 but only told to take laxatives by that Dr. I had my gallbladder removed shortly after that which didn’t improve things, fast forward to 2015 when I was living off enemas to get by and ended up hospitalized with colon obstruction which perforated. I had a subtotal colectomy but things still went downhill. I found out I had a pelvic organ prolapse soon after and had a hysterectomy with bladder and rectum repairs and removal of abdominal adhesions in summer of 2017. Still, things slowly went downhill and, again, I was living off laxatives and multiple enemas per day with extreme pain and inability to eat. I then found out about the outlet obstructions caused by pelvic floor dyssynergia, tried and failed pelvic PT/biofeedback therapy; two weeks ago I had surgery to form an ileostomy and I’m already doing so much better! I’m sorry you’ve had ongoing troubles.

    2. Your story touched my heart. As I have been through many of the same struggles. I have had the 3 am ostomy bag explosion, I have had well over 16 major surgery. I now have a end ileostomy and a chronic condition they can not explained why my large colon lost its ability to move any BM, it created a hiatal hernia in my atomic. Which made it impose to really eat. I then had a subtotal collectomy that helped for about 3 months after I healed from the surgery, then it got worse. I had to strain so hard to have a BM that I would pass out, my hernia became more painful, I was on the Surgeons list for a possible reversible ileostomy however COVID-19 hit and my surgery was hold. Over June and July I found I want feeling too bad but not myself, then September hit, I had several extremely painful episodes but manager to clear myself at home, I was also starting to lose weight. At first I thought it may be because in the summer I walk a minimum of 5 Km and put 10 KM a day with my service dog. Well October came I ended in hospital 3 times, being brushed off by ER Physicians as just a constipation case I was now now from 120 pound to 95 Pounds and then the worst attack I ever had happened I had blood, vomit, pain way past the scale the give you at the hospital, and a CT scan showed I was compliantly blocked, and with all the pushing I ended up having a intussusception. I had a 4 day stay in the hospital (getting out on Halloween to clear my out, and was on hold for the surgeons to device “do it now or wait and see, then let my surgeon book by surgery “ He and the hospital worked hard to get the first OR appointment possible. November 19th. I stayed Quarantined until my surgery date and was on a liquid diet until then. The prep for surgery went well as I was already on a liquid diet, no seeds 😭, no fibre (I was use to having to eat a high fibre diet) I was now down to 90 Pounds by the time of my surgery. When I left the hospital I was under 88 Pounds. They found what was left of my large colon was stretch bigger than a foot ball and the join of the small intestine had stretch to a foot ball size. With that I now have an end ileostomy. My gut, atomic and rear are very thankful it is all done and no I will have a chance to live life not just watch it go by. Yes I have other issues that came up due to my chronic condition including lost of trust of the medical system, the way I was treated by some not all Dr,’s Nurses”s, and other over my 45 years of torture including endometriosis, fibromyalgia, neck injury, PTSD, arthritis, Major depressive disorder, I, at first felt it was better to shut up and put up as no one but my family seamed to understand the suffering I was going through. I now find allowing my story to be heard helps to provide hope for others (as there is a DR or Surgeon) out there that will believe you, its not all in your head, and there are many many other people who have suffered, are suffering, who are now able to return to living life. Last of all there are a large number of people who have been there and willing to help provide support. I also found art such as painting, beading and other artistic avenues to help expressive my journey. I also enjoy my therapy dogs/cats and my Service dog helpful on difficult days.

      Thank you so much for sharing your story and helping to provide HOPE, and the feeling of not being alone.

    3. What an incredible story my dear. I had stoma due to colorectal cancer and been a year. As you said it is not easy to accept it but I have to positive to deal r we it’s it. I was not sick when I was diagnosed, find out through routine colonoscopy test. Thank God they found it early. I am doing fine. After a while it will be part of our routine. Also there are wonderful stoma bags we can choose. Hanging in there dear!!

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    Cazhttps://invisiblyme.com/
    I'm Caz, a blogger, freelance writer & tea drinker in the UK, living with chronic pain and invisible illness. Since losing my regular 9 to 5 job due to ongoing stoma surgeries and ill health, I now run my own blog, InvisiblyMe https://invisiblyme.com/.

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