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Happy 4 Years to Stoma Life & CrohnsFighting

Happy 4 Years to Stoma Life & CrohnsFighting

Thinking back to 4 years ago, I had just started my CrohnsFighting account to document the second set of stoma surgery I was having to help my recovery and acceptance of having life-changing surgery that was hopefully fingers crossed going to change my way of life. 

I never imagined in setting up that Instagram account that I would be where I am today. I am still amazed that people follow me, check-in and ask for advice and guidance. The age-old saying of it helps one person has served me well and I now also make a living due to that stoma. 

My second stoma surgery

On the 21st of November 2016 I had my second stoma placed, a rather intensive 10 hrs down in theatre thanks to immense amounts of scar tissue, I came around on HDU, got over my post-op ileus in 3 days and was discharged on day 7. 

Being discharged and having the December to recover was daunting but I soon got back on my feet.

By week five I was out and attempting a Santa visit with the kids. I had a horrendous leak, mum had to purchase new clothes for me whilst I stood naked in a disabled toilet trying to stem the flow, clean up and get a clean bag on. 

I remember standing there and thinking oh dear god it’s my first stoma all over again, I can’t live like this.

A rushed garbled phone call with my stoma nurse secured me an appointment for 2 days. By the time I got in to see the nurse my stoma site was sore, macerated and you couldn’t tell my peristomal skin from my stoma. 

My stoma nurse ran around the hospital trying to find something that would stick to the mess that was my stoma site alongside trying to get past my adhesive allergy issue. It was Pelican stoma bags and that changed my life.

Leaks in the early recovery period are a normal par the course, finding the correct combination for you can be trial and error, once you have the right combination then it’s all systems go. 

A year into using these I developed contact dermatitis, trialled the Vitamin E equivalent and haven’t looked back since. 

Bertha gets a facelift

In 2018, I had my last set of stoma surgeries fingers crossed. Bertha was refashioned from a loop to an end ileostomy and I had what was left of my large bowel removed and rectum closed. This surgery was for the better and may I just say my end ileostomy is a dream compared to my loop. She’s small, she’s cute and for the most part, she is well behaved. 

I will admit that recovery was harder, the more surgery you have the harder it is. 

The first six months were pretty much a blur. I have to admit I struggled with my recovery and my surgeon wasn’t telling me porkies when he said 6 months before I started feeling relatively human. Recovery was hard and the shift in hormones and my body healing was both tiring and frustrating. Having my stitches removed 4 weeks post-op set back my stoma site healing by another two weeks as had to have them dug out as they weren’t dissolvable. Thank god for my Pelican stoma bags with the added Vitamin E as the skin healed fantastically. 

I am one of the lucky ones and my barbie butt healed with no further complications. 

Life after surgery

For those of you who are worried about life after surgery, please don’t be, for the most part, I forget I have a stoma, switching to a 2 piece bag means I change once a week if needed and just change the clip-on bag every other day.

My soon to be husband, friends and family are all incredibly supportive, they occasionally tailor meals to my needs as I still can’t eat things such as mushrooms, kidney beans, bell peppers or avocado, two are due to my stoma, the other two make me violently sick. 

Now my stoma is well seasoned and I can pretty much eat most things these days within reason. 

My awareness accounts are rarely trolled, I won’t tolerate bullying and for the best part, I try to educate whilst being well rounded and show life isn’t limited due to my stoma if anything it has improved my quality of life and that to me is the most important. 

Let’s see what the next four years bring!

As always

Many thanks for reading 

Louise Xx

Louise uses our Platinum with Vitamin E range to keep her stoma site healthy. Try a sample here.