An open, honest account of life with Crohn’s Disease // Guest Profile

This week we have a guest profile from the lovely Lisa! She is sharing her journey with Crohn’s disease today. It’s honest, open and it’s certainly not sugar-coated. For those reasons, it’s one of my favourites to date. I hope you enjoy as much as I have!

Q. Tell us little about yourself! Do you work, if so what do you do? 

My name is Lisa and I’m 30 years old. I used to work in a fandom themed retail company but I’m currently out of work while recovering from a Crohn’s flare up and an abdominal abscess. Currently working on writing, got a blog but I also write short stories and poetry. I like a lot of geeky stuff, read a lot and watch cult films/TV. 

Q. Can you tell me about your condition?

I’ve been living with Crohn’s disease for a few years now and it has completely changed my life. Crohn’s is an autoimmune disease that causes inflammation of the digestive system. It can occur anywhere in the digestive system from the mouth to the butt. It can cause:

  • Damage to digestive system resulting in chronic pain
  • Narrowing of the bowel meaning that food can not travel efficiently or be absorbed by body
  • Fistulas (tunnels/channels) through the body from the bowel to other organs or to the skin
  • Abscesses and infections

There is no cure and no concrete answer to what causes it. It affects more women globally than men, usually presenting between the ages of 16-30. There is no set treatment for Crohn’s, but typical treatment centres around easing pain and the symptoms of the condition with things like include diet changes, pain management, steroids and surgery. Crohn’s can have active and inactive periods, remission in between flare ups. There is evidence to suggest that Crohn’s can be treated with marijuana, but not enough medical studies have been carried out just yet.  Symptoms I have personal suffered from related to my Crohn’s:

  • Blood in your stools
  • Night sweats
  • Insomnia 
  • Extreme fatigue
  • Diarrhoea 
  • Constipation 
  • Vomiting
  • Depression
  • Abdominal pain
  • Muscle pain
  • Extreme weight loss
  • Weight gain
  • Hair loss
  • Dehydration 
  • Dry skin 
  • Canker sores
  • Mouth ulcers 
  • Oral thrush
  • Acid reflux 

Q. How does your Crohn’s disease affect you day to day? 

Warning: Parts of this will be kinda gross! 

I’m recovering from having a abdominal abscess so I’m currently off work. Crohn’s now pretty much affects my entire day. I sleep on a towel in bed. At first it was because I had times of extreme diarrhoea and was worried that I would not be able to control my bowels. But now it is because I have a bag attached to my abdomen (called Bob for discretion).  I live in fear of leaks! It’s not common but it can happen. It’s easy to detect when you’re awake but can happen when you’re asleep and you wake up in a mess. I sleep on my back where I once used to sleep in my side as I’m, again, worried about the bag. 

Once awake and the bag is emptied and any meds taken its time for food! It’s a bit of a minefield because each person has different reactions to different foods. I can’t tolerate most fruit and veg so take a multi-vitamin everyday. Luckily I can eat dairy and gluten but I can’t eat seeds, pulses, nuts and some herbs/spices. During in a flare up I’ll stick to rice and protein shakes as they are soft on my system. Eating out can sometimes feel like an ordeal I can’t be bothered with. When I was on holiday in America I had no problem having things removed from a dish and finding out ingredients. In complete contrast, I find ordering in the UK frustrating. I get a lot of ‘it just comes like that’ and ‘it’s already pre-made’ or ‘we can’t swap that out for that’. 

Photos show the changes Lisa has gone through since diagnosis

When I shower/bath I cover my stoma  with a sandwich bag and waterproof surgical tape because the medical equivalent are expensive. If I’m going some where I might not be able to get to a toilet, I’ll tape a sanitary towel over the stoma to bag connection. I’m constantly looking out for smells or leaks. Again, it’s rare to leak but it’s always on my mind. It’s become quite an obsession! 

I don’t go out lot because I worry about when I’ll eat, when I’ll empty Bob, the smell, the leaks and I’m always a little tired. After my last abscess, I lost some of my hair due to weight loss and malnutrition so now have short hair.  I’m constantly in and out of hospital having things poked where you definitely don’t want to be poked and often the doctors aren’t really sure what to do with me. Often I look completely healthy but there’s a huge biological battle going on inside me. 

Q. How do you find your condition is impacted, if at all, by living in London?  

The tube is a nightmare. I look well so I feel guilty taking a seat. Also, I worry about rush hour because of the smell, leak and bag situation. Also, toilets are hard to find on the underground. I prefer the bus so I can hop off and find a public loo.

Restaurants are hell. We need more plain food options on menus in fancy restaurants. Just rice and chicken!  Wish Marks & Sparks would do an ultra plain meal deal!  I honestly prefer pubs, theatres, cinemas and clubs but I wish there was more disabled toilets in them. 

Overall we need more education on Crohn’s because explaining it to nearly every new person I meet is a drag.  

Q. What is something that would surprise others to know about your condition?

Periods make a Crohn’s flare up worst! The scene in Alien where the creature burst out of the guys stomach is based on a Crohn’s stomach ache and I can tell you it sums up how it feels pretty well. 

Q.What glimpse of wisdom can you share with us?

Talk about your poo! Don’t be ashamed of bloody poop, wind, bloating, poop, diarrhoea, constipation, vomiting or any other body function that seems unusual. Especially your poop. Don’t worry if it’s not “lady like” because treating Crohn’s early can help you avoid future issues.

Thank you, Lisa! A wonderfully open and honest account of her journey with Crohn’s. I firmly believe that it is only through truthful – not sugar-coated – accounts of life with disabilities, like Crohn’s, that the rest of society will ever be able to understand (or come close to it). Screw the stiff upper lip and suffering in silence; honesty and candour are king!

If you, or someone you know/care for, would like to share your story please get in touch.

Until next week!

Lily x


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