It’s perfectly normal to feel overwhelmed after ostomy surgery. There are so many questions and concerns that flood your mind. Being actively involved in the online IBD and ostomy community answered a whole bunch of questions I didn’t even know I had! And the list of things you can’t do? Spoiler alert—it’s actually very short.

In a previous post, I covered resources for common questions, like emptying, showering, food, travel, and more. This time, I want to share not just my experiences, but also insights from other ostomates. I don’t have all the answers, but it’s important to know you’re not alone.

I asked the community: What did you struggle with most after ostomy surgery?

Sexual and reproductive health

Women often face reproductive issues post-surgery—some anticipated, some not. Infertility, painful sexual experiences, premature menopause, and increased discharge are common but rarely discussed. These issues can be challenging, impacting self-confidence and quality of life.

For men, colorectal surgery can damage nerves, leading to erectile dysfunction and retrograde ejaculation (semen entering the bladder). This significantly affects quality of life and self-esteem. Many men feel they weren’t adequately informed about these risks beforehand. Some even said they didn’t think they’d have wanted surgery if they had known.

Bladder Complications

Interstitial cystitis (bladder pain syndrome) is more common in people with inflammatory bowel disease, especially post-ostomy surgery. Symptoms include pelvic pain, frequent and urgent urination, or difficulty passing urine. On the other end of the spectrum, an underactive bladder can cause hesitancy, incomplete emptying, straining, and recurrent infections. These symptoms can affect sleep, and lead to anxiety and potential avoidance of activities and travel.

Hernia

Parastomal hernia is a common complication post-ileostomy or colostomy. Many ostomates weren’t informed about the increased risk or how to minimize it until it was too late. Surgery is usually avoided unless the hernia causes acute issues. Recurrence rates are now much lower due to advancements in repair methods. The use of synthetic mesh has decreased the recurrence rate, which is now thought to range between 7 and 18%.

Rectal stump complications

If your rectum or rectal stump is left intact, it can be a real shock to feel the urge to go to the toilet and pass mucus or blood. The remaining rectum still produces mucus, which can be occasional or regular.

In IBD, the remaining rectum can still accommodate active disease, often requiring medications and possibly further surgery to remove it.

Unpredictable output

Frequent, loose output is typical post-surgery but usually settles as a routine is established. It can be scary if you’re not warned about it, though. Particularly if you are experiencing leaks because of it and you don’t realise this is not your new normal, just temporary. The intestine needs time to heal and the inflammation to subside. Anti-diarrheal medications and IV fluids might be necessary. Dehydration risk is higher during this period, with 29% of post-ileostomy discharges readmitted due to dehydration.

You may be discharged with medications to slow output down, which you might be able to reduce over time or continue to take long-term.

Dehydration

Hydration needs vary based on stoma type, health, weight, climate, and activity level. You might need more salt or an oral rehydration solution. Recognising dehydration symptoms (dry mouth, thirst, dizziness, fatigue, dark urine) is crucial.

I take daily electrolytes but still struggle to find the right balance on hot summer days or when I’ve increased activity. I am at least good at spotting dehydration quickly now, allowing me to act on it ASAP. For me, dehydration often comes with passing a lot of liquid output. This is due to my electrolytes being off balance and would be a “normal” person’s diarrhoea.

Leaks and sore skin

Leaks and sore skin are common worries. Advice on bag changes varies, with people reporting more frequent leaks for longer wear time advice and sore skin when following advice to change more frequently. In reality, we’re all working around different lifestyle considerations and commitments, so routines are very personal.

In the early days after surgery, there’s a distinct lack of reassurance from stoma nurses and healthcare teams, that leaks won’t happen regularly – but they are normal as things settle down.

With so many bag and supporting product manufacturers, nobody should be dealing with frequent leaks!

Solo bag changes

Many ostomates fear solo bag changes, feeling unprepared for home care. Initially, it’s slow and scary, but soon it becomes a quick routine.

Emptying away from home

Worries about emptying the bag away from home are common, sometimes leading to outings cut short or avoiding food prior to going out. The main concern is smell. I carry a “spray before you go” bottle, which works well in public or friends’ bathrooms. Opening a window also helps!

Body confidence and scars

Many struggle with their new body and scars. Some are able to embrace their stoma and scars, while others see them as reminders of trauma. I’ve grieved for my pre-stoma body. When I had my first stoma reversed, I had scars from the midline incision, drain, and ileostomy. They basically covered my entire abdomen and were a constant reminder of 2 dreadful years, full of leaks, burnt skin, misery, and isolation. I hated them. So much so, that I had my stoma scar tattooed over. I wanted to forget the period in which I felt nothing but embarrassment, weakness, and shame.

For me, it was the online ostomy community that helped me reach acceptance. Now, I’m proud of my scars. I even regret covering the old ostomy one. It’s been quite the journey for me, and it’s definitely not one that can be rushed through.

What to wear?!

Being a bit lost in the clothing department is totally relatable to me. Trying to accommodate your new accessory can feel complicated. Not knowing whether to wear waistbands above or below. And of course, having to deal with the psychological impact of what your body just went through. I previously wrote about my experience, and shared tips and specialist clothing sites.

Confused by food

Poor dietary advice is a common complaint. Many aren’t told that the dietary restrictions for post-surgery are meant to be temporary. This leaves many ostomates living on a restrictive diet, scared to try new foods.

A food diary helps track tolerance, and trying new foods gradually is essential.

Needing someone to talk to

Feeling lost and lonely is pretty common. In my opinion, mental health support pre and post-stoma formation is crucial. Whether that comes from a professional, support group, family, or friends.

Chatting to those with lived experience can be invaluable. It’s important to understand that your journey is uniquely yours, but at the same time, there are people out there who get it. People who have experienced and faced similar struggles. Then there’s those close to you, who may never fully get it, but who care enough about you to want to be involved in helping you feel better.