Making the decision
In 2016, when I was first diagnosed with IBD, the idea of having ileostomy surgery sometime in the future didn’t even register on my radar. I barely even knew what an ostomy was.
Flash forward four years to 2020 – I had been ridiculously sick for several years. Failed three biologics. Diets, supplements, medications, mountains of prednisone…none of that was working. I was still having massive inflammation.
I had zero quality of life. Blood. Pain. Weakness. I was in and out of the hospital constantly. My body was beginning to make the choice for me…the colon had to go.
At the time, I believed that anything had to be better than this. If surgery was required, then so be it. I was miserable. If an ileostomy would give me even a little bit of my life back, then that was the road I was going to take.
Time marches on
Four years later…do I regret that decision? Not really. Some days, I look at my ileostomy and think…wtf? Some days, I get angry and frustrated at how things turned out. I have never been one of those people to say, “I love my ostomy!” For me, my ostomy is a necessary evil. I respect it. I am grateful for it giving me back some quality of life. And I am still learning to fully accept it.
Are things perfect post-surgery? Hell no! But I’ve learned to live with it. And it seems that as time goes on, I learn to accept it more and more.
Weighing the choices
This blog post aims to highlight the pros and cons of living with an ostomy, from my experience over the past four years. Note: everyone’s experience living with an ostomy is different. Some people sail right through, others struggle. I would say I probably fell somewhere in the middle of the pack…maybe leaning more toward the struggle side. Especially in the beginning.
In sharing this information, I want other people to be able to make informed choices in regard to ostomy surgery. I want people to go into surgery knowing what to expect – the good, the bad, and the ugly.
Starting with the GOOD
Ostomy surgery can offer many potential benefits. There is no question that, for many people, it gives them a whole new lease on life.
Improved quality of life
- Can significantly reduce the frequency of trips to the bathroom. You may no longer be “glued to the toilet.” Goodbye accidents! Hello, freedom!
- Often leads to significant reductions in pain, cramping, and uncomfortable urgency
- After surgery, some people are able to eat less restrictive diets (although specific trigger foods, and high fiber foods, may need to be avoided with an ileostomy)
Medication reduction
- Some individuals may be able to reduce or even eliminate the need for certain meds
- For ulcerative colitis, a colectomy with ileostomy is usually considered “curative,” and, in many cases, you do not need to be on a biologic or immunosuppressive med anymore
- However, with Crohn’s disease (especially in the case of small bowel involvement), you will likely have to stay on some medication regimen
Finally, ileostomy surgery can prevent a number of future health complications. Obviously, fewer (or no) IBD flares is the most significant benefit. But it can also decrease or eliminate the risk of things like bowel perforation, excessive bleeding/anemia, and colon cancer.
Potential drawbacks to consider (“the bad”)…
Life with an ileostomy isn’t all fun and roses. Adjusting to your ostomy appliance can be challenging – both physically and emotionally.
- It can take a while to find the right ostomy appliance setup that works for you, often you will have to try 2 or 3 different brands or models to find one that works with your anatomy
- You may have to deal with skin sores and painful irritation around your stoma
- Some people have bad skin reactions to the adhesives in ostomy devices
- There is often a significant $$$ cost associated with ostomy appliances and supplies…often it is mostly covered by your insurance plan…but it all depends on your provider and coverage
- If the surgeon leaves your rectum intact, you will still have to deal with annoying discharge
- Peristomal hernias are a thing! They happen in up to 50% of patients and often do not go away without surgery (they can also be painful and uncomfortable – be forewarned!)
- Remember, with an ileostomy, you may still be emptying 8-12+ times per day, especially during the beginning
- Ostomy leaks happen! In the middle of the night, in public, often when you least expect them. They happen less and less as you become more confident with your ostomy…but it is always still a possibility
- You will have to change your ostomy every 1-4+ days, depending. With an ostomy, you are forced to be up close and personal with your fluids and “output”…you learn to live with it
- Your clothing will fit weirdly, and you may have body image issues (especially in the beginning)…bathing suits and beaches may be perceived differently/negatively depending on your confidence level
- Blockages can happen with an ileostomy. They suck. Avoid really fibrous food…sometimes they happen anyway. If your output stops, you have abdominal pain, and you start throwing up…get to the hospital ASAP
One thing that is NEVER a problem with an ostomy is smell. There are products (e.g., M9 drops) that manage that. It has never been an issue for me. Everything else listed above has been an issue to one degree or another.
Final word
Life with an ileostomy is 100% better than it was compared to when I was living in the nightmare-land of constant flares. The ileostomy gave me my life back. It also took a few things away, and made life more difficult in some aspects.
A better word to use rather than difficult is “different” – life with an ileostomy is “different.” You can learn to cope. You can learn to adapt. It takes time and patience and a crapload of self-compassion. But it can be done.
If you are dealing with severe, medication-resistant IBD (especially ulcerative colitis) and your GI is recommending ileostomy surgery, it is almost guaranteed that it will give you a better quality of life. Just make sure you go into surgery with realistic expectations.
For everybody out there faced with that choice (and it is not an easy choice, I know)…you got this! Seek out the advice and support of IBD/Ostomy Nurses, and others in the ostomy community. Be gentle with yourself. Take it step at a time, one day at a time. Acceptance won’t happen overnight. And that is ok.