Tina Otten

My Story: (I wrote this for my online, private support group. Thought I’d share here also. Not looking for sympathy just wanted to share. There’s always hope in your life)

Flashback July 2014: I didn’t even know what a colostomy was !! I had severe diverticulitis and had numerous episodes where my bowel perforated (unbeknownst to me !!??!!)

Although I was informed before the surgery there might be a chance I could end up with a bag, I never imagined I would be the unlucky one it could happen to. Not knowing was probably better in hindsight.

I came round still in denial and not wanting to look under the covers. The wound care, ostomy nurses were amazing and supportive. They (along with my visiting nurse) helped me get over my fear. I really felt their compassion, empathy which made me feel better and not ridiculous for overreacting. With the best support from my friends and family, I started to deal with it. It was scary to say the least, but you quickly adapt to things thrown your way that you cannot prevent.

Crying every time I passed wind in front of people was an everyday occurrence at first…. The lack of control was very embarrassing especially being female.

Knowing it was more than likely a permanent stoma as of August 2014 made accepting “it” harder at first. But as time went on, surprisingly I grew quite attached to him, (it being male as most men are a pain in the arse !! 😜)

It’s very hard for anyone at any age to cope with “it”and have a social life. I got braver as time went on and started going out again. I quickly learned what to eat/drink and what to avoid.

Buying a new wardrobe to hide the bag was my treat to myself as it helped with my confidence and body image. No-one ever guessed I had a bag.

I was always straightforward about my ostomy with my job. That was my decision because if something happens I could keep my manager posted, which made it easier on both parties. (The down side with me and my personality: I felt the need to work harder to prove my worth).

After 13 months with “it”, I had a colonoscopy to see how my intestines looked and to see if a reversal was possible. Having been told originally I had only 20 – 30% chance a reversal could be done, I didn’t get my hopes up. You can imagine my surprised reaction when my Doctor said it was possible for me to have a reversal! (It would be another 10 months before the reversal surgery happened).

So, I went in for my reversal operation on August 5, 2016.

Having a bowel resection is a major operation and recovery but emotionally it was easier to deal with for me. I had to have an open surgery (no laparoscopic surgery for me), due to scar tissue from the previous two surgeries. Had a wound vac for 4 days of my hospital stay (to help with the healing process of my very long incision). On my release day (day 5), I needed to be closed up, requiring 32+ staples. Also after said operation you have to be able to have a bowel movement to confirm that the operation has been successful. That first bowel movement was a massive relief!!

I’m doing ok. My incision is still bleeding a little (lower abdomen). I developed cellulitis is around my belly button area. Oblong shaped. (Cellulitis is a bacterial infection of the skin and tissues beneath the skin) The cellulitis has slowly shrunken to almost nothing. Thank goodness this issue was caught in time and the antibiotics worked !

I am coming around from the operation. I am starting to regain my energy and bounce back from it.

During the first few months a person can experience going to the toilet up to 15 times a day, sometimes with urgency and soreness. Unfortunately the frequency is very different to what you may have experienced before. I was scared about going to the toilet in the normal way again. (my brain is having to re-educate the rectum as to when I need go to the toilet) There is a continual sensation of urgency which I’m still learning to ignore.

I went from keeping my colostomy a secret while I first had the bag to being more open about discussing it. I am proud of what I had gone through and feel stronger for it. Some were aware of the bag while I had it and were understanding and in many cases quite curious and wanted to know more.

There were many funny, embarrassing and cringing moments throughout the 24+ months that I had my colostomy bag, but you have to try to see the funny side of these things and laugh!

I still have PTSD moments due to almost dying. I will survive as I am almost 10 years out from my experience. But, when illness strikes I become hyper vigilant.