One of the many downsides to having an inflammatory bowel disease like Crohn’s or Colitis is that you most likely have to take an immunosuppressant drug which makes you susceptible to illnesses and infections.

Ever since I’ve been on the immunosuppressant drug Azathioprine, I’ve had the annual flu vaccination, and this winter, it was no different. Until now, each season I’ve managed to avoid the flu but this season I fell foul to it and straight away I knew it wasn’t a cold. When your calf muscles quickly feel like you’ve been on a stairmaster you know it’s not a common cold.

The Flu and the Stoma

The flu arrived with force quite quickly taking hold in just a few hours on Monday morning. I managed to irrigate early on the Monday morning without issue and due to being completely empty there was no activity for the rest of the day. By Tuesday I was feeling much worse and didn’t like the idea of getting out of bed to sit on the toilet to irrigate so based on having little to eat on Monday I decided to leave it for another day.

I still had my regular nurse appointment to have my dressing changed (yes it’s still there!) and she confirmed that it was most likely the flu rather than a cold. Tuesday was another day of not eating much so there was no issues getting through to Wednesday with no output. This was an interesting test to see if I could get to 48 hours without irrigating although without eating much it’s not an accurate test.

I think for now I’m going to continue with irrigating every 24 hours until I’m confident with how regularly things function.

Abdominal Pain

Tuesday afternoon into evening I started to feel abdominal pain that just wouldn’t go away. In the past when I’ve had similar pain it’s been down to wind, and on this occasion there was also wind but the increase in pain was a concern. By night time it had subsided so nothing to worry about.

Bizarrely, the next afternoon the same pain reappeared but more uncomfortable. This pain persisted whether I was standing, walking or sitting and I’d be reminded of it when coughing. At this point I wasn’t sure what could be contributing to the pain as there was a lot going on. I was new to irrigation, I had flu, I’ve got a parastomal hernia. Any or all of these things could be contributing to this discomfort and whilst there’s a genuine concern, I still like to be realistic and wait a little to see what happens.

As it happened, throughout the night the pain subsided and the next day there wasn’t any discomfort. Abdominal pain isn’t normal but at the same time I know that there are so many variables to take into account so I just let time take its course and hope it isn’t anything serious.

I’m seeing my surgeon next week and will be raising it with him in case it’s related to the hernia.

Should I Still Be Taking Immunosuppressants?

Should you be still on those tablets based on the number of infections you get?

Work colleague

Who knows? My specialist didn’t know when he saw me in hospital so right now I’m not sure whether there is a benefit to taking them. Post surgery, there wasn’t a solid plan other than ‘if you’re used to taking them, then crack on’ . I’m fine taking them (when I remember – it becomes harder when you know they aren’t directly helping things), but do I really still need to be taking them?

If there’s a benefit to taking them, then I’m happy taking them, but there isn’t a tangible benefit and at the same time my immune system makes me susceptible to picking up illnesses, should I continue taking these drugs?

My next appointment with my Crohn’s specialist isn’t until March so I guess until then I’ll keep plodding on taking them.

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Diagnosed with IBD in 2002, I have experienced the usual ups and downs of having a chronic disease and tried numerous medications but the time finally came in 2018 to elect to have surgery to improve my life. I had the surgery in 2019 and this is my journey having a 'New Bum'.

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