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Patient voice: ulcerative colitis

British Journal of Family Medicine, 16 January 2020

Ulcerative colitis is a long-term condition where the colon and rectum become inflamed leading to abdominal pain, diarrhoea, fever, fatigue and weight loss. In this blog, David talks about how a stoma changed his quality of life.

 

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I was diagnosed with ulcerative colitis in 2000. The initial symptoms were flu-like, but slowly became more aggressive. I went to see my GP who thought it was food poisoning and prescribed a broad-spectrum antibiotic treatment. Within two months, however, the symptoms became so bad that I was hospitalised and that’s when tests showed I had ulcerative colitis.

I was 33 years old and it was a frightening reality to be faced with. Throughout the following years, I received standard treatments - azathioprine, mesalazine and prednisolone - which for the most part kept me functioning and were able to mask the tough times.

Eventually, my ulcerative colitis became steroid-resistant and my consultant changed me to biological treatments - golimumab and infliximab. This lasted for a few difficult years with no impact on the disease until my IBD nurse suggested I meet with a surgeon. I had three children by this time, all teenagers, and I was relatively high-functioning, but I was pushing myself to never show my children and wife that I had an illness in any way. It didn’t always work, but I did my best; never taking a sick day from work or life.

The meeting with the surgeon was short. She said: “you have suffered long enough”. I said: “yes, I have”. That was it. My wife and I were both relieved and a bit scared about what was to come.

My family were very supportive, but the grim reality is it was a lonely process of internal reflection, of which prayer and meditation were the crutches. I did loads of research and exhausted YouTube, learning everything I could about the procedure and life with a stoma. There are some great resources out there, but like everything you have to take the good with the bad. There are a lot of people with bad experiences that needed to vent their frustrations so the law of averages would dictate that you will see more bad than good.

In 2018, they removed most of my colon and I had an ileostomy where the small bowel is diverted through an opening in the abdomen. When I got home from the hospital, I immediately got to work on dealing with this new way of life. I felt better with no ulcerative colitis symptoms, but I now had an alien protruding from my abdomen that demanded attention.

The day-to-day reality of life with a stoma

Getting home and moving around was hard for the first few days. I think that the steroid withdrawal and perhaps my body getting rid of all the other drugs coursing through my veins was a big shock to the system. Body aches, arthritic in nature, lasted for a fair few months but slowly dissipated.

I started, the very first day home, forcing myself to remove the bag every morning and take a shower. This process continues to this day but is now just a normal routine. For the most part, I change my bag every day and shower with no bag. For me, when I wake up things are very calm with my alien friend but there are still activity issues from time to time but you get used to dealing with them. I think the more you face your new friend the sooner you will accept him into your life. If like me you suffered for years, the new order of things is a small price to pay – I feel great nowadays, for the first time that I can remember.

My bag of choice is the Coloplast SenSura Mio 1-piece and I have to cut them to size. I have tried a two-piece but didn’t like them for a few reasons - the biggest is I like to shower bag-free every day and found it didn’t really work for me in this regard. Also I found the flange a bit messy and waste gathers around the inner edge and I didn’t feel clean when changing the bag. Emptying my bag is, 90% of the time, done kneeling in front of the toilet. This works best for me and if I am in a public facility I just put some toilet paper on the floor to kneel on, unless it is a really gross restroom, then I will sit and empty that way.

"I felt better with no ulcerative colitis symptoms,
but I now had an alien protruding from my abdomen 
that demanded attention."

I do sleep through the night. The only issue I may have is the bag occasionally fills up with gas, which I can carefully burp out while laying on my back and opening the bag. I can do this in about 30 seconds and go back to sleep. In the evening, before bed, I use one of the Diamonds sachels to help with the gas odor from burping the bag and it thickens the waste which can help for a more comfortable sleep.

I eat quite normally both food-wise and timing-wise for breakfast, lunch, and dinner. I try to have dinner around 7pm and not eat much after 9pm just to avoid having to get up at night – I am usually in bed around 11:30pm and up at 7:30am.

In the morning I have toast and juice and a few cups of coffee so the output is quite liquidy before noon and the Diamond sachel thickens it up. You can use other thickening agents and oral medications to assist in this as well like Imodium to slow things down and thicken output, but I have been drug-free for a year and prefer not to take anything. I need to empty my bag one to two times in the morning and three to four times in the afternoon/evening and one time before bed. In total it is probably five or six times a day and not a big deal. When to empty your bag is, for the most part, a choice as I could conceivably only empty it a few times a day but I don't like the feeling of a heavy bag.

As previously mentioned my operation was a subtotal colectomy, which means I have a rectal stump as part of my colon still remains from my pelvis to the rectum. I have discharge from the stump in the morning and evening so need to sit and let it empty. It is a mucous-like substance that your body produces to aid in sliding out stool. Even though I have no bowel-movement my body is still producing this and needs to get rid of it. This is not the same for everyone. There is a sensation that I need to use the toilet so I know when to get rid of it. There is not a lot of discharge and is not painful or uncomfortable at all.

The future following temporary ileostomy?

With the subtotal colectomy and temporary ileostomy, I have three options for one big future decision that needs careful consideration. The first option is to move towards a J-pouch. This is when the entire colon and rectum are removed and a reservoir is created from the ileum which is then joined to the anal canal. This pouch serves as a storage place for the stool that  is able to pass through the usual route, eliminating the need for a permanent external bag. 

This is the favorite of my surgeon and my wife but I feel so good and I am not bothered with the stoma that I am not sure about the risk versus reward factor. If you do a bit of research you will understand what I am talking about. Also, my age may play a factor in retraining my body to adapt. So the Jury’s still out on this.

The second option is stump removal and stitch-up the anus. It has a 3% increased level of colon cancer in the left-over colon so this is not enough to tempt me back to surgery.

The third option is to do nothing and continue on the way I am now, which frankly is at the top of my list. For me, at the age I am, I am not so bothered with body image, it’s more about living a good life without more drama.

No matter what the choice is I am aware that it will not be all rainbows and unicorns, but neither was the past. My future decision will need a lot of thought and family and clinical consultation before it’s made as it will determine how the next chapter of my life will unfold. For now, I am enjoying my new normal.

Further resources:

https://www.crohnsandcolitis.org.uk/

https://www.crohnscolitisfoundation.org/

 

If you would like to share your story about a condition or chronic disease please email the editor at alison.bloomer@pavpub.com