Is Anything Safe to Eat?
Who can eat with all this stomach pain?
When my ulcerative colitis symptoms started in 2007, I was dealing with incredible abdominal pain and diarrhoea. I was sleeping, waking in pain, running to the toilet, and then returning to bed.
I wasn't awake long enough to really even think about food, and to be honest, the thought of putting anything in me filled me with fear. I was only passing mucous and blood, and I thought if that was causing so much pain passing through, imagine how much actual food would hurt!
Trying to get nutrients into my diet
My mum was concerned about me not eating, so she bought me some build-up powders with nutrients. One was chicken soup and the other was strawberry milkshake. She made me one, and as soon as I'd swallowed, I was back in the bathroom.
I was having an internal battle because I knew she was right. I needed some sustenance. I thought I'd read the box, as it might tempt me in with its promises of all this goodness going into my body. I saw something like milk powder or lactose, and I had in my head that that was bad for diarrhoea, so I refused to drink them anymore.
Nothing was safe to eat with UC
By the time I was taken to A&E (emergency department), the only thing that had passed my lips with any nutritional value in the 2 weeks prior had been that sip of strawberry milkshake. I was officially frightened of food.
I was diagnosed with ulcerative colitis and my colon was removed less than a week later. Due to a lack of education and correct communication from anyone in my healthcare team, I spent the next 2 years peeling grapes and tomatoes, removing seeds from everything, and avoiding anything with insoluble fibre.
No one had ever said that the dietary guidance I'd been given was supposed to be for the first 6-8 weeks following surgery and that I should then be trying to add things gradually again to find my tolerances. So that was another 2 years of being scared to eat many foods.
Would I have more safe foods with a J-pouch?
In 2009, when I had my J-pouch connected, I was told I should try to introduce new foods after the initial healing period. I was excited to start eating a varied diet again! I had missed vegetables!
I was very lucky because food didn't seem to cause me any issues. I chewed everything super well, so I imagine that helped. Alcohol was something I had to drink in moderation, and certain drinks such as pink wine were a complete no-go!
But my UC flares came back
Then, the pouchitis flares began. Food already passed through pretty quickly with my J-pouch anyway, and even more so when I was in a flare. Too much fibre would just speed things up even more.
The flares always had me exhausted, so I never planned to go anywhere at weekends. They were reserved for rest ready for a new work week.
So, I would eat healthier at the weekends because I knew I was staying at home. During the week, I lived on crisps, ramen noodles, ham sandwiches, pasta, and cheese.
Insoluble fiber and intestinal strictures
Then, to make matters worse, intestinal strictures (narrowed parts) of my intestine became a thing. All insoluble fibre caused pain.
On occasion, I'd still eat something I knew would really hurt when I was at home for the weekend, but it had to be worth it. It had to be something I loved! The strictures got tighter and tighter until I couldn't eat anything without pain, which resulted in an emergency surgery in 2014.
Learning what is safe to eat from others with IBD
I had a stoma again because my pouch had been damaged during the surgery and it needed time to heal. This time, I knew better than to avoid fibre. I'd become involved in the online IBD community and I had learnt a lot about Crohn's, colitis, and life with a stoma from online research. I was able to eat everything again. That was one of many reasons I was so grateful for that stoma.
I had my J-pouch reconnected and started my journey of discovery again with food. Unfortunately, it didn't work as well as it had done initially.
Incontinence, pouchitis, and a low-residue diet
I had nighttime incontinence, so I spent a long time trying to figure out what foods made this better and worse. It didn't seem to be food-related though.
Again, pouchitis reared its ugly head and I was back to low-residue foods. This time, however, I tried my hardest to include more fruit and vegetables daily.
What I learned I could eat with UC
I found I could tolerate sweet potatoes (no skin), squash, avocado, and bananas. The blender became a good friend. I made my own soups, pasta sauces, root veg mash, chickpea mash, and cauliflower mash.
I'm thankful that I've been able to tolerate dairy the whole time. Cheese improves everything!
The pouchitis was unstoppable, so I ended up having my J-pouch removed in favour of a permanent stoma. I'm pleased to report that we're doing OK food-wise.
Carbs and starches are safe for me
I eat quite healthily, but it does require a pretty hefty portion of carbs/starches each day to slow my gut down! I always aim for 5 a day, but I often fall slightly short.
I make sure I have fruit juice with lunch every day, and I chew incredibly well as insoluble fibre can cause me pain. There are a few things I simply can't tolerate, but that's due to scar tissue and I don’t find it too limiting.
At some point, alcohol just kind of fell away, too. Now, I'll have some mulled wine on Christmas Eve (with cheeses, of course), and I'll put Irish cream in my coffee when it gets cold out, but I can take it or leave it.
With UC and Crohn's, food is a journey!
So, as I'm sure you can tell, it's been quite a journey with the food! I've learnt a lot over the years and I try my best to have as balanced a diet as possible whilst also considering the needs of my body. I think that’s the best any of us can do, right?
How open are you about being diagnosed with IBD?