In part one, I shared the emotional rollercoaster of living with my first stoma.
It took me seven years to openly talk about having inflammatory bowel disease (IBD). For the first two years, I lived with an ileostomy, and for the next five with a J-pouch and chronic pouchitis.
I used social media to vent my frustration about the judgmental comments I received due to my invisible illness. I was fed up. I wanted people to understand that you canāt judge someoneās struggles just by looking at them.
To my surprise, my first awareness post wasnāt ignored. People with IBD, whom I didnāt even know, commented and shared it! This led to me spearheading an awareness campaign, creating a support group, and even winning a Pride of Britain fundraising award!
Support made a difference
The online community changed my life. Many people I spoke to were grateful for their ostomies, as they gave them their lives back. The community taught me about different underwear to keep the bag flat, enabling people to wear whatever they wanted. I discovered that the care I had received previously wasnāt sufficient. I should have been offered more options and supporting products to prevent the leaks and burnt skin I had endured for two years. It was enlightening!
So, when I woke up from an emergency surgery for a twisted intestine and an abscess with a second ileostomy, I knew where to turn. This time, I didnāt hate myself. I had experienced being unwell for a longer period, which had made me grateful for it. I didnāt throw away all my clothes. Instead, I ordered some ostomy support wear. Most of the time, I just wore a cheap tight vest top under my normal clothes. It was genuinely life-changing. My confidence didnāt plummet like I had half expected. Plus, I had support!
I had that stoma for five months before it was reconnected to my J-pouch. Four years later, the J-pouch was removed and I had my current, permanent stoma.
Reliable sources of information are important
Being active in the community meant I knew where to look for information before the surgery. I had the chance to ask people for tips about issues Iād had in the past, such as itching and leaks in summer. By the time the surgery came, I felt completely prepared for my new life.
Iām no longer ashamed or afraid to talk about it
When I initially had my latest stoma, it felt very prominent. I think that was more due to weight loss than anything else. Once I gained weight and found my routine, I felt comfortable with it. I even liked it! Research suggests naming your stoma can help, which I did the second time. It definitely made it easier to talk about for me and for others. Friends would ask me how “Porta” was doing!
Now, I just call it āmy stoma.ā Referring to it by name almost made it feel like a separate entity. At this point, I fully accept it as part of me.
I even dated with my second ostomy. I was very upfront about it when I started chatting with anyone new. I expected negativity, but I didnāt get any. People were usually just curious!
Thereās nothing I canāt wear. I wear full briefs with a lace top daily to keep the stoma bag flat. I wear clothes for comfort most of the time, but itās good to know that if I want to dress up, I can! I donāt even mind people seeing my bag anymore. I will wear a crop top and have the top of my bag peeking out with no issue, but thatās not for everyone.
I am proud of my ostomy, and I am proud of me! I have come such a long way since that lost 19-year-old!
My top tips for stoma acceptance
- Exposure therapy: Spend time with your stoma; look at it, touch it, and maybe even talk to it. Gradually increase the intervals.
- Grieving process: Itās normal to grieve for your body. Let yourself feel those emotions, and then work on dealing with them.
- Patience and support: The process takes time, and that timeline isnāt fixed. Having the right support system around you helps immensely.
- Self-love: You deserve as much love, respect, and kindness as anyone else. Anybody who makes you feel differently is wrong.
- Personal Change: The need for a stoma doesnāt change who you are. If you make changes, ensure theyāre on your own terms.

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