Ben who has a stoma bag

I made the decision to have surgery, and it changed my life for the better

Published 19 January 2022

After two extended stays in hospital with Colitis flare-ups, Ben had some treatment options to consider and ultimately opted for stoma surgery.

We spoke to Ben about celebrating his 18th in hospital, the support he's received from those around him, and how he's doing now.

In the midst of the pandemic, I was struggling mentally.


Ben
Living with a stoma

I enjoy going out and doing things with friends, which we couldn't do, and I struggled with online school. I much prefer physically being in school. I found that being taught online was making me more stressed and I felt like I wasn't getting much done.

To add to this stress, it was at this time that I was diagnosed with Ulcerative Colitis.

I feel very lucky that my diagnosis took less than a week from first visiting my GP, as many people wait months or even years to be diagnosed. I went to my GP because I was going to the toilet over 10 times a day and most of the time there was blood in the toilet after I was finished. This was obviously very worrying, so I booked an appointment straight away!

A couple of days later I got told to go to hospital for a colonoscopy and on that very day I got my diagnosis.

I was very scared, and my main thought was that I would not be allowed to eat a lot of my favourite foods. I thought they would all have the chance of making my Colitis worse.

Towards the end of 2020, I was very ill. There were still a lot of toilet trips, I had ulcers all around my mouth and I had extreme fatigue. A lot of days I didn't leave my room. I went into hospital for nearly three weeks and, while I was there, I turned 18.

The days leading up to my birthday were hard and I was nervous as I didn't want to miss my 18th. However, the support I got from everyone on my ward and from the IBD nurse specialists was incredible during this time.

My best memory from this was waking up in the hospital bed on the morning of my 18th with a present laying on the bottom of my bed which read "Happy 18th birthday Ben, from everyone on ward M". This lifted my mood a lot in such a hard time. I was finally discharged, but not for long.

December came along and was the hardest month of my life.

My Colitis symptoms were the worst they had ever been. I was back in hospital and my days consisted of waking up, going to the toilet (a lot), and sleeping. I wasn't eating and I was drinking very little water. The hardest part about all of this was not being able to have any visitors due to coronavirus restrictions.

When my doctor called my mother in to discuss options, I knew things were bad. We discussed the next step, and it was either to bring forward my infliximab infusion, or have surgery to form a stoma.

Initially I was scared of the thought of surgery and living life with a bag so I opted for the early infusion but that night I reconsidered. I had already had two infusions of Infliximab; the first one kind of worked and the second one didn't work at all. Thinking it over, I realised that I just wanted to be better and the infusions were tiring. If anything, the most recent infusion had made me feel worse.

I looked online at people living with bags and read how much happier they said they were with their bags.

I had met with the surgeon, and this also reassured me to some extent. It was a decision that I made very carefully but in the end I did what was right for me and the next day I told my nurse that I wanted the surgery.

It was a very emotional time for me as at that point none of my family or friends knew I was having this life-changing surgery. Only me. I was scared to tell people because I thought everyone would think I had changed and not want to be friends with me anymore. However, it was the complete opposite, and nearly everyone around me has helped and supported me through this journey.

I am different to how I was pre-surgery, but I see this as a good thing.

People have told me that I’ve fully come out of my shell and I’m more confident than I ever have been. Having the surgery has made me thankful for what I’ve got and what I can do.

The first couple months were challenging as there was lots to get used to and figure out. For example, I didn’t know how to empty my bag into the toilet. I hadn’t seen anything on how to do it. Now, I kneel down in front of the toilet but in the first couple weeks I couldn’t kneel down without assistance because of the recovery pain from the surgery. I was also worried about going out in public in case anything was to go wrong.

I have joined online support groups for people with stomas, met people out in public with a bag and kept in touch, and follow ostomates on Instagram who are so helpful and always answering questions from people.

Since those first couple of months, I have learnt to embrace my stoma bag and now I love it. It has given me my life back.

Since my surgery there have been times when restrictions have lifted and I have gone to festivals, football matches, darts matches, little holidays, and nights out with my mates. I wasn’t able to do any of this pre-surgery. I’m even now currently planning my first holiday abroad with my bag and cannot wait.

At the time I was unsure of my decision to get a stoma but I look back and think it was the best decision I ever made.


Learn more

Learn more about living with a stoma.

Page
saved

This page has been saved in your personal space. Go to “My Page” to view all saved pages.

Helpline service

Helpline
Service

We know it can be difficult to live with, or support someone living with these conditions. But you’re not alone. We provide up-to-date, evidence-based information and can support you to live well with Crohn’s or Colitis.

Our helpline team can help by:

  • Providing information about Crohn’s and Colitis.

  • Listening and talking through your situation.

  • Helping you to find support from others in the Crohn’s and Colitis community.

  • Signposting you to specialist organisations.

Please be aware we’re not medically or legally trained. We cannot provide detailed financial or benefits advice or specialist emotional support.

Please contact us via telephone, email or LiveChat - 9am to 5pm, Monday to Friday (except English bank holidays).

Live chat

If you need specific medical advice about your condition, your GP or IBD team will be best placed to help.

Would you like to save the changes made to this page?