Tuesday 19th May is World IBD Day. With this coming up, I thought it would be a great opportunity to talk about Comfizz and the impact they have made on my stoma journey.
How I got my stoma
At age 7 I was diagnosed with Crohn’s Disease. Crohn’s Disease can be anywhere from your mouth to your bum, but a lot of people typically have it in the small intestine. This was where it was diagnosed with me. Being scared as a young child of having scopes (endoscopy/colonoscopy & I still am now, I can just push myself through it), I didn’t undergo tests to keep an eye on things as frequently as you maybe would with an adult with bowel disease, but I still had tests. I do have some quite horrible memories of hospital but I also seemed to have blocked a lot of it out somehow in my mind, which probably works in my favour now. I do get flashbacks etc & hospital nightmares still, but thankfully they aren’t a reality anymore.
I moved up to the adult clinic at aged 17 & had my first “scope” in a good few years, I was found to have Crohn’s Disease not in my small intestine significantly, but instead it was throughout my large intestine (colon) and I also had Crohn’s within my bum and outside my bum on the surrounding skin too. The large intestine (colon) is where Ulcerative Colitis is. The results of my scope meant I was diagnosed as Crohn’s Colitis (Crohn’s of the colon).
I’d had several medications and endless steroids as a child and because the bowel medication had been targeting Crohn’s as if it was in my small intestine, my colon had effectively gone without treatment for 10 years. It had reached a severe state & my specialist at the time described how my colon was “shot to pieces”.
To cut a long story short, Infliximab (Remicade) was my last option before having to resort to surgery. I had this for several months then in May 2011, I started to have doubts whether it was working or not. A scope not long after this revealed that Infliximab had failed & my only option now was to go for that surgery. After first being told I would more than likely need a resection, I was told I would need a permanent ileostomy & I would not be a candidate for J Pouch surgery either.
My stoma operation – Panproctocolectomy
My operation was first planned for June/July 2011, but I became very poorly & had to be admitted to hospital to have intravenous steroids (via a line into my veins). At one point, I remember being sat on a commode in my hospital room in agony, pooing black blood. I was told that I would only be operated on if it was an emergency because steroids would severely affect my ability to heal. Later after my operation, I found out that if I hadn’t responded to the IV steroids before my operation within literally those few hours, I would have been rushed in as an emergency & would have been left with an open wound.
In August 2011, I had my surgery to give me my permanent stoma (who I refer to as Stacey Stoma), a few days after I’d been admitted to hospital again via A & E. This was originally planned to be done via keyhole. When surgeons started my operation, they found a benign tumour, the size of a watermelon, on my Transverse Colon, which had not been found before my operation. This meant my abdominal cavity had to be operated on via open surgery, leaving a nice battle scar down my stomach which I am proud of.
The surgery was very touch & go and took a lot longer than thought (near to 9/10 hours I believe) & I had to have blood transfusions & gave my surgeons a good scare or two! Without my surgery, I wouldn’t be here writing this.
Post-surgery body image & discovering Comfizz
One of the first worries I had in the run up to my surgery was whether other people would be able to tell I had a stoma bag. I was worried that I would have to dress in baggy clothes forever & spend my life trying to not look pregnant on one side of my stoma due to a full stoma bag! I was even worrying about going to shops and people thinking I had shop lifted if my bag was bulging under my clothes. The anticipation of finally having a life both excited me and terrified me at the same time. I remember thinking time and time again about the things I would do to just have a half “normal” life and to look “normal”.
My Mum & I got searching on the internet for things that would make stoma life easier. At the time, I wasn’t on any Facebook support groups and rarely used an internet support group for those with Bowel Disease. My Uncle, who unfortunately isn’t with us anymore, had had a stoma formed not too long before mine, so could give me tips and tricks for stoma life. I can’t remember exactly how we found Comfizz, but all I know is that I haven’t looked back since.
Receiving the garments & meeting the Comfizz team
Since I received my very first Comfizz garment (the neutral 7” waistband), my collection has kept on growing. I was a little bit cautious to wear the bands at first but gave them a try maybe a month after surgery. My main concern was that they wouldn’t allow my stoma to work or would cause my bag to leak, but I was soon put at ease when I spoke to the team & gave them a try. Since 2011, the only time I’ve experienced a leak with these garments was when I ordered a size too tight, which is likely to happen with other clothing regardless if you select the wrong size. Comfizz were great at getting a new size to me & have never been able to do enough to help.
When I have had bag leaks due to stoma problems, it has been Comfizz products that have stopped my stoma output leaking through onto my clothes & have bought me a lot of time before I’ve managed to get somewhere to clean up or change. This gives me that added confidence that if I do leak and I’m away from home, that it’s not as urgent to sort as it would be without the waistband. This helps me on so many levels, especially living with anxiety. I remember driving back from Manchester once with my Mum and just as I drove us past a sign for the services which were about another 20 miles away, I felt the dreaded trickle of stoma output under the baseplate of my bag.
Thanks to my stoma waistband containing the ever-building leak, I was determined to drive those 20 miles & that’s what I did, before arriving at the car park and Mum helping me to change my bag & sort everything out at the back of the car. My Mum helped me to maintain so much dignity whilst a few people tried to see what was going on, but I didn’t think twice about going inside to the toilets. I had waited long enough to sort it as it was and just wanted it done, so I just got on with it, changed my bag & wrapped my waistband in a carrier bag ready to wash when we got back. If I didn’t have my waistband on, I would have definitely had a bigger leak situation on my hands!
In the early years post-surgery, I met Lorraine & Nozar & did some work with them about their fantastic products. It really didn’t feel like work. In fact, it felt like having a reassuring chat with friends who genuinely cared and were so keen to help make my life with a stoma easier. Due to distance and our busy lives, I don’t see them often but we stay in touch via e-mail & I was lucky enough to be reunited with them again last year when I was picked as a Brand Ambassador and took part in a body-confidence boosting photoshoot!
Comfizz – allowing me to be me
Today, as I have done since early post-surgery, I wear the clothes I love, and my stoma bag doesn’t stop me (as you can see in the collage above). I wear normal underwear, with a Comfizz Level 1 10” waistband on top, with my clothes on top of that. If I’m wearing lighter clothing, I always go for a white or neutral waistband underneath so you can’t see the colour through my clothes, then mix it up if I’m wearing darker clothing with a black waistband. I always like to wear the vests in Winter, or sometimes if I am doing. The choice of support levels in the briefs and waistbands is also a great help for feeling that bit more confident and well supported when exercising. I wrote a post a while back for Comfizz on my fashion tips & tricks with a stoma.
It goes without saying that I would be a shadow of the person I am today without these products in my life. Comfizz enable me to have the body confidence I need to dress how I want to dress & go about my daily life with a stoma, knowing that my stoma bag will be well supported, secure and still do what it needs to do without being hurt or restricted. I would not have step foot in a gym without these garments under my clothes or dreamt of going for a run. I would not have dreamt of wearing tighter dresses or skirts.
“Thank you” will never be enough to thank the amazing Comfizz founders for really making such a positive impact within my stoma journey, and I know I don’t just speak for myself here. I would also like to say a special “thank you” to Lorraine who continues to be a great support to me, especially when I’m struggling mentally.