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Stoma Update | Dealing With a Flare-up 

It’s no surprise that my body hates me and occasionally it likes to come back and remind me that I am human and that chronic illness doesn’t just go away and it is constantly ticking away finding a way to come back and bite me in the bottom. 

My Crohn’s has been flaring since January and it has taken a long time to get the IBD team to listen and not fob me off to my stoma nurse (who FYI has been absolutely amazing). In January I had one lonely ulcer on the tip of my ileostomy, this has progressed over the months and it now has loads of ulcer friends. My stoma can only be described as looking like it has a bad case of herpes. On the plus side, I now know what a full-on Crohn’s flare-up looks like with an ileostomy so that’s a bonus. (My sense of humour is rather dark and a little twisted). If I didn’t laugh I would probably cry. 

Crohn’s Flare-Up

A flare with a stoma is pretty new to me. It’s something that is peculiar but if my stoma is anything to go by then any further exploratory examinations they are knocking me out for!!

How is my stoma behaving? 

My stoma behaviour has been weird, to say the least. I am used to high watery output and a fair few empties. 

My stoma has never been constipated until now. My stoma feels a little grouchy. She is incredibly windy and being able to sleep with a mini bag on for 3 days was absolutely amazing. 

Symptoms of a Crohn’s Flare-Up

Symptoms of a flare-up are different for everyone but here are a few of the most common symptoms:

  • – Fatigue – I like my sleep but coming home from a shift and crashing out between calls or crashing out for several hours after finishing is not my normal
  • – Abdominal pain 
  • – Cramps
  • – Bloating & wind
  • – Mouth Ulcers
  • – Skin infections – or in my case I had a gout flare-up
  • – Hair loss
  • – Weight loss
  • – Blood in stools

The one good thing about having a stoma is that it has made my Crohn’s flare easier to diagnose. My IBD team emailed me back today. The photos of the ulceration on my stoma has proved helpful. I have had my blood and calprotectin taken. They are discussing me in the clinic next week to review starting up on biological therapy again, it’s the only thing that works for me. This also means that I am now on home isolation for 12 weeks or until the coronavirus blows over. 

I am awaiting a capsule endoscopy which I think they are posting out to me. Not sure how that works but at least I can vlog it and show it to you. That’s going to be fun coming out into my stoma bag…

I would like to say a massive thank you to everyone that commented and sent private messages of support along with asking for advice when I posted up the bare stoma photos explaining what the flare looks like. 

The community support has always been amazing and I am slightly overwhelmed with all the messages and comments of support in this current climate. 

Will keep you all updated on the flare 

As always

Many thanks for reading

Stay Safe

Louise X

Louise uses our Platinum Vitamin E range to keep her stoma site healthy. If you’d like to try a sample, click here. 

This blog post is intended to give advice to ostomates. The information given is based on Louise’s personal experience and should not be taken as clinical advice. Each ostomates needs are unique to them and their stoma care routine. Please consult with your Stoma Care Nurse before undertaking any changes to your stoma care routine or if you are experiencing any health issues.

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