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Ostomy days – PART TWO

Chait Caecostomy Tube 

So in late 2017 I had a Chait Caecostomy Tube inserted. Basically an incision was made in my abdomen and the caecostomy tube was put through the opening into the first part of the large intestine called the cecum. My colon was then secured to the abdomen to reduce the movement of the colon. One month after this procedure I went back into hospital to learn how to perform the daily irrigations through the caecostomy tube. I learnt how to attach an irrigation bag to the tube and how to flush fluids through, to move stool through the colon and rectum. This was a process which involved many steps and ended up taking between 1 and 1.5hours every morning. 

At first it was such a relief to have something which worked and moved everything through my system, I felt very grateful! But before long I developed my first internal infection of granulation tissue, which had built up due to the constant movement of my tube. This scar tissue build-up and infection which required antibiotics, new tube insertions and silver nitrate treatments in the doctors’ offices unfortunately became a regular occurrence for me. Some of the infections became more sinister and I required general anaesthetic to do a complete clean out of the infection site and insertion of a new tube. Within 2018 I had a total of 6 caecostomy tube replacements due to infection, when you are meant to only have one routine tube replacement each year. What to do next?

More complications…

The pain and discomfort from the tube movement, along with the increasingly long irrigations each morning were not sustainable and started to impact my mental health. I dreaded having to get up and spend (in the end sometimes 2 hours) on the toilet while my children had to fend for themselves and I had to get the four of us out of the door on time each morning. I saw a fantastic psychologist for the first time in my life, but only ended up having four sessions due to the endless appointments and day surgeries I needed in 2018. 

I spoke with my surgeon and after more testing he advised me that I required a rectal resection to remove the large amounts of scar tissue in the rectum (which is currently holding up my rectal prolapse). The particular procedure required is risky and there is no guarantee that it will be successful due to the recurrent nature of my rectal prolapse. The risk factors, all of my complications over the past few years and the physical/mental strain I was under at the time, meant that colostomy surgery was the best option to give me a break over the coming years.

So I prepared for another surgery….but this time I was hopeful that it would be the last for many years to come.

Colostomy Surgery

I was admitted to hospital on December 20th 2018 where my amazing surgeons performed a laparoscopic loop colostomy surgery. Extensive adhesions had to be cut through during the surgery, from my past surgeries and issues, but otherwise all went according to plan. A colostomy is surgery to bring part of the colon, or large intestine, to the surface of the body to form a stoma, an artificial opening on the outside of the tummy or abdomen. Waste from the colon is then collected using a bag called a stoma pouch. 

The initial pain I experienced in recovery was intense and over the next five days and nights I went through a rollercoaster of emotions. I felt relief that I was on the other side of the surgery, which I had been growing increasingly anxious about in the weeks leading up to the procedure. I felt fear when I looked at the surgery site for the first time, a gaping hole in my abdomen where my colon had been cut in two and then stitched to the outside of my stomach. It was a very gory site. I coped well with my lovely stoma nurse showing me how to change my colostomy bag for the first time, I was tentative, but was also familiar with looking after my own medical needs by this stage, having had a caecostomy tube for the year prior to this surgery. 

This particular hospital stay was not pleasant at all, I reached a point after a couple of horrendous days and nights where I started vomiting and I was placed on a more intense regime of laxatives etc to try and get the stoma working. I passed a small amount which was a huge relief and a sign that the stoma was able to function correctly. On Christmas Eve I was let out of hospital early so that I could go home and spend Christmas with my family. 

Moving on…

I tried my best to put on a brave face when I saw the kids on Christmas morning and then I got dressed and went out to family functions, but by night time, I was done, my stoma had finally started to work…..but then wouldn’t stop working. I reached a point where I couldn’t physically or mentally handle changing another bag, I looked at myself in the mirror and saw my ‘mutilated’ stomach and I was done! So my amazing husband scooped me off the floor of the shower, cleaned me up and changed my stoma bag….true love! Experiencing the very real, very raw realities of bowel surgery, hysterectomy, bladder repair, caecostomy tube, colostomy bag and all of the endless procedures and testing times in-between, has only brought us closer as a couple – we couldn’t be any closer, we’ve shared so much!

Getting used to the colostomy bag took many months of trial and error and I did question whether it was actually better than the tube – but now, nearly 18 months on, I know for sure that it was the right move. 

Learning how to be completely comfortable again has been tricky, this isn’t a reality I expected to be dealing with at 36 years of age, but it is my reality and I have to now move on and embrace it. I don’t know whether my future bowel surgery to repair my rectal prolapse will be a success, I don’t know whether I will always need a colostomy bag, I don’t know whether my pelvic floor will be able to be repaired in the future to stop the further prolapse of my pelvic organs, but I do know that I can’t worry about these things which are out of my control – what will be, will be.

I have reached a place of acceptance and will deal with any issues as they arrive. I have a chance to move on now and I am so grateful!

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