TW: this post contains bare stoma content
For those of you who don’t follow me over on my awareness Instagram page @battlewithendo_ox you won’t know the struggles I had with my initial stoma.
I first had my stoma formed in March 2020 couple of days before the whole country went into its first lockdown. I was heading into this surgery because my large colon had lost its function, therefore, was obstructing. I was told I needed an ileostomy to bypass it & bring the small colon to the surface in order to stop the obstructions. The plan was to remove my large colon at the same time as they were forming the ileostomy, but sadly my surgeon was unable to perform the surgery due to ill health. This is when another colleague stepped in & said a loop ileostomy was sufficient enough & I didn’t need my large colon removed (how wrong was he?). Anyway, I knew no better & went ahead. From the first time I woke up my stoma was tiny at its biggest it was 22mm & protruded maybe 1cm. For me I didn’t think anything of it as I didn’t know no different. I kept having comments from stoma nurses saying it was very small & that’s why I had problematic skin.
Where it all started…
Little did I know 4 months post-op I would end up being rushed into hospital due to no stoma output & my stoma fully retracted under the skin. This is where the nightmare started. Due to the retraction, my stoma had stopped functioning & went into the size of a pinhole. So the output was bypassing my stoma & going into what was left of my large colon. This was very dangerous as my large colon has zero function, which again left it vulnerable to perforation.
By this time I was able to see my original surgeon & he agreed it needed revising & my large colon removed. But Covid through a huge spanner in the works as all lists were cancelled.
I was reviewed every few weeks to keep an eye on the stoma & its function. It would randomly stop functioning for a week, which would land me in hospital. To then function a little so I could be at home. They tried everything to keep this tiny stoma active. They put a catheter inside the stoma to keep it open, they pumped enemas through a sigmoid scope to relieve any of the obstruction, I had an NG tube, I was on IV fluids no solid foods whatsoever. I would be hospitalised for 7/8/9 days each time to try & get it under control. It was a living nightmare.
Finally the day of my surgery came to remove my large colon & revise the stoma. At this point we were desperate, I had been on a liquid diet for months, my stoma was fully under the skin, it measured 14mm in circumference, my belly was massively bloated from all the obstructions, I was sick all the time. I remember them going through my surgery with me in the morning & telling me all the risks (high risk due to previous surgeries) & I really didn’t take any of it in. I was so worn out & drained I just needed some relief. I needed my quality of life for the sake of myself, my daughter & my husband.
The surgery took 7 hours in total & they managed to revise the stoma successfully & remove the large colon. They did it via open surgery & I definitely underestimated the recovery. It was tough! But I’m so grateful for that surgery as it essentially saved my life. My surgeon told me I was days away from my large colon perforating. That has life-threatening consequences & doesn’t even bear thinking about.
I am now nearly 12 weeks post-op & my stoma is incredibly healthy & a good size. So much so I thought it was prolapsing (can tell I’m not used to a normal stoma). Clearly, my surgeon & stoma nurses have reassured me this is not the case. My stoma now measures 30mm circumference & protrudes a good 2.5cm.
Before & After…
You can see by the comparison photos that the difference in stomas is mind blowing. Im feeling okay in myself, taking each day as it comes & finding the balance with my new stoma. One thing that definitely is made the world of difference with my new stoma is the new Pelican Modavi bag. I seemed to have issues with my skin post op but once I started using the Modavi bag & the Vitamin E barrier wipes the skin is settled.
Don’t be afraid to reach out
My advice to anyone who is concerned about their stoma possibly retracting then I would get in touch with your stoma nurse or colorectal consultant for them to keep an eye to see how quickly it’s retracting. What I found helpful is measuring each time I changed my bag & notes on my phone so I could see any differences. Don’t ever be afraid to reach out for help or advice from your medical professionals. That is what they are there for.
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