Living with an Ostomy

Since my original diagnoses in 2003 by specialist Dr H, I have suffered from ulcerative colitis. My ulcerative colitis was only mild until 2009, thats when I started to develop more severe flares and I was going back and forward to the UHW university hospital of Wales. Unfortunately my new specialist didn’t believe me, he said it was all in my head and that he thought my original diagnoses was wrong and that I only had IBS. It wasn’t until I demanded a colonoscopy in 2010 things started to change, for some amazing coincidence the person performing my colonoscopy was my first Specialist Dr H. He diagnosed me straight away with pancolitis, (often referred to pan-ulcerative colitis, total colitis or universal colitis pancolitis is a very severe form of ulcerative colitis and it’s spread throughout the entire large intestine including the right and left colon, transverse colon and the rectum). I remember asking Dr H - is it all in my head or am I ill? and his answer was oh no it’s not in your head you have pancolitis. Because it had been left untreated for so long the large intestine was so badly ulcerated that Dr H said I needed emergency treatment straight away to force the disease into remission. It’s really dangerous to go with untreated pancolitis as patients have a higher chance of developing colon cancer and also have a high risk to develop hemorrhaging from the ulcers. 

It really makes me angry that for so many years I went back and forward to my specialist complaining of severe pain in my stomach, rectal bleeding, diarrhoea with blood, fatigue and very often fever but he never referred me for a colonoscopy. I was going to the toilet up to 25 times a day sometimes even more, my bum was so sore that sometimes I was just crying of pain all this at the same time I was trying to hold down my full time job. I can’t remember how many times I did soil myself on my way to work or in meetings or falling asleep on my desk due to iron deficiency that left me with severe fatigue. I was hiding all this from my work colleagues never joined them on any social gatherings, they must have thought I was really awkward and unsociable. 

I remember when my new specialist diagnosed me with severe anaemia he told me to eat steak everyday, didn’t prescribe me any iron tablets or did anything to find out why I was having severe anaemia. I was lucky I had a very understanding boss that supported me inorder for me to continue working full time. I must say that without his support I would never have been able to work full-time. Dr H started me on immunomodulators to suppress my immune system straight away, So thats where I am at the moment my entire large colon is removed and that has cured my pancolitis, but I desperately need surgery to remove my rectum as I have severe disease in my rectum, I also need it to prevent any chance of colon cancer in the future. 

It has been 6 years since I had open surgery to remove my entire large intestine due to ulcerative colitis. I know live with an ileostomy bag and when I’m well enough I will have my next surgery called a proctocolectomy (surgical removal of the colon, rectum, and anus) to create a permanent ileostomy.  

"What is it? the general term for a surgically made opening in the body is called ostomy. An ostomy that comes from the colon (large intestine) is a colostomy. An ostomy that comes from the ileum (end of the small intestine) is an ileostomy. The protruding piece of bowel that is outside the bowel is a stoma. Sometimes the op can be reversed and a bag is made from the end of the small intestine and is called a j pouch or oleo anal pouch".

This was a really difficult time in my life and what made it harder was the lack of understanding, I felt so isolated and alone. I hoped to never have to live in fear ever again of finding the closest bathroom nor not being able to take part in activities, It was painful, uncomfortable and I felt exhausted. 

In my first month with an ileostomy bag I was sore and achy and was still coming to terms with the changes I had to make within my lifestyle. I had to learn how to go to the toilet in a new way, I had to learn how to change the bag and the frequent use of nappy sacks. I had to learn a new routine completely, I had to get use to this overwhelming feeling of how significant this new part of my life was going to be. I can’t express the gravity of emotions I experienced, somedays I woke up feeling motivated, powerful, like nothing in the world could possible pull me down. Other days where filled with pain, exhaustion and shame, a feeling so much deeper than sadness that i can’t even explain.

I realised how little we focus on what really matters until we’re forced to. Before my ileostomy bag, I was completely image obsessed. Now, when I look in the mirror and I can only see half of my stomach, whilst the bag covers the rest. I look back and I feel angry at myself for not appreciating the body I consistently obsessed over before. I wish I’d made the most of my body before the bag, before the scarring. All I can do from this point is love myself the way I should have. I know now that what matters isn’t on the outside, as cliché as that sounds beauty is really skin deep.

7 years on I’m still having real problems finding suitable bags which do not leak, yesterday I had 4 bag changes. The problem is that the skin around my stoma is red raw and ulcerated and when I stick my baseplate the adhesive doesn’t stick because the skin surface is weepy. It’s really hard to get some air to the skin to allow it to heal as it is covered all the time. I normally change my stoma bag every day in the shower, running warm water on it in the shower makes my skin feel so much better its lovely.

And what a  process of changing the bag, first I have to remove the old stuck on baseplate, cleaning of the old glue from my belly whilst my stoma keeps pumping poop, making my way from the shower to my bed (while my stoma keeps pumping poop). Waiting 20 minutes while the skin dries completely (stoma still pumping poop), cutting the new seal to fit my stoma, gluing on the newly cut baseplate, and laying flat in order for the bag to be secured in place without a gap (all while my stoma keeps on pumping poop). This is so time consuming, though it is something I have become more and more efficient at. These days I get the baseplate cut to size, it’s so much easier it’s heaven.

Most frustrating of all, however is dealing with a leaky ileostomy bag especially when I’m out and about. Sometimes the bag will spring a leak in the car, shopping or just sitting down, and I have to deal with it there and then. It’s really frustrating when I have to remove a well secured bag that might have lasted two day’s otherwise because of a small leak.

Each time when I’m attaching a new bag on my skin can be a completely different experience. 

There is no muscles in an ileostomy and so its impossible to ‘hold in’ poo or wind. This means that it is ‘going off’ pretty much all the time. So if you ever spend time with someone with an ostomy, be aware that the noise of them passing wind is beyond their control. 

But whatever I go through with this ileostomy is better than living with the incredible pain I lived with before and if I didn’t have the procedure the end diagnosis would have been, death. For most people with an ostomy it’s an improvement on their health, it is a treatment to rid the person of illness or disease and so life can be better than ever before.

It really infuriates me when people say they would rather die than have a colostomy bag, the truth is us ostomates didn't have a choice as we would have died without it. 

I never thought that my ileostomy was going to bring me other complications, I thought I was going to be cured for life. A few months after my initial surgery I started to have pain around my stoma, and just from nowhere I developed a small red spot on the side of my stoma. Within 24 hours this little red mark had grown into a black crater and the pain was unbelievable. I had developed pyoderma gangrenosum PG, which I will tell you more about in my next post.

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