My Love/Hate Relationship With Food

My Love/Hate Relationship With Food. The last 14 years with Crohns has been a struggle with the thing we all can’t live without. That thing is the word food.

My Love/Hate Relationship With Food

I am currently taking part in research up at King’s College London under Professor X as she shall be named on behalf of CCUK. The aim of the study is to find how food impacts IBD patients and how to improve how the patients receive help and advice when newly diagnosed. This will hopefully be something that is put into action as I think there is a desperate need for IBD to be understood better and for the patients to be listened to.

I personally think that all patients should be offered counselling after diagnosis or surgery to help them adapt. This is a life long illness that impacts daily life, relationships and your overall mental well-being. I also believe that dieticians should be better trained as my experience with them hasn’t always been a good one.

I think that patient advocates or a buddy system should be put into place to help those that need it.

I’m very lucky in the fact that I now have friendships with ladies that are like me. It’s comforting to have people that understand what we all go through. My family and partner are extremely supportive and understand what I have been through.

My Struggles with food

My struggles with food have been well documented over the years. Prior to my Crohns diagnosis I was given the incorrect diagnosis of Anorexia at the age of 18. My GP at the time should have seen all the warning signs. I had cellulitis, extreme weight loss, sickness, severe constipation to severe diarrhoea then throw that in with extreme pain and passing blood. But no, I was a young female with an eating disorder.

At the start, my mum was at her wits end and would sit and watch me eat or stuff me up with com-plan. I can honestly say I still detest milk and milkshakes to this day. Everyone’s way of dealing with it at the time was to feed me up and it would go away. Now I was packing away the calories on occasion but it was going straight through me. If the pains and the cramps started then I wouldn’t eat.

I actually remember taking up smoking full time as I found that it eased the cramps and the pain. Sounds nuts as all consultants will tell you that with Crohns the act of smoking can actually make the bugger worse. When I got my diagnosis, I stopped smoking for 3 years and it didn’t make the slightest bit of difference in the way my Crohns presented.

The amount of medicated liquid diets they have had me on over the years has also impacted me. Nothing beats a liquid diet for 3-6 months and ending up in hospital again because my body won’t let me eat and reintroduce food. I’ve pretty much been on the full spectrum of liquid diets. Last stint was modulen in late 2015 for 4 months. Then there was the stint with TPN for 6 months and trying to eat whilst on it wasn’t fun. Then there are the steroids, going from eating not a lot to turning into the hulk and the permanently hungry monster is something I struggled with. I don’t now as will always refuse steroids.

Blind panic

I’m the first to admit that I panic when it comes to eating out at restaurants I haven’t been to before, the amount of times I’ve asked for food to be changed at order and they haven’t taken out what I’ve requested and thrown my guts up and still had to pay for the food is like a slap in the face. There’s nothing worse than tunnel vision and getting the sweats at the thought of having to order, I tend to go for sharing plates or starters as a main now. That way I don’t feel like I’m wasting food.

Then there’s being served on a normal dinner plate, my brain sticks up the middle finger. I religiously eat off of a side plate as my brain associates that as something my tummy can manage, this side plate is at my parents, brothers and friends’ houses. They understand and with my family being big eaters it’s always a laugh and joke that I’m eating a kiddie’s dinner.

Then there’s the amount of surgery I have endured. You would think after 20+ surgeries that I would learn that I will projectile vomit green stuff for up to 3 days after the initial surgery. I will honestly say for up to 3 months after surgery my attitude to food is extremely poor. I would rather not eat than have to be subjected to sickness and pain. I hate being sick and it always hurts. So, to avoid this I have often pretended to eat and thrown it in the bin. No one likes hospital food. My last surgery I was being watched by Ben and he made sure that any food he brought in was something that I could eat and something I liked at the same time. This aided my recovery and it was faster than previous surgeries because I had the energy to actually recover instead of me eating very little for 6 months or so. Then I have the show ladies, they have aided my recovery and a better attitude towards food.

Mental attitude to food

Ermmm my mental attitude to food has its high’s and low’s; I can go days with only eating once a day. To having a complete binge and feeling rather unhappy and disgusted at that fact. Then there’s the drugs that make you put on weight against your will and having no control. The only thing I could control is what I put in my mouth. So, I could say that food for me was a battle. The things I have learnt especially the last 5 years is that I need to do what’s best for me. I have to have a healthy attitude to food or my neurosis will rub off on my daughter. So thankfully now she is older and more aware that has helped me immensely.

Since Novembers surgery

Since Novembers Ileostomy surgery my relationship with food is healthy. I can eat a few more food groups than I could with the Bile Salt Malabsorption. I don’t have to worry about the pain caused by food coming out of my rectum and causing pain. I have discovered I can now eat spicy food again and even have the odd KFC without too much aggravation apart from the smell. I know what my aggravation foods are so I completely avoid them. Especially after an incident with a rather tasty shepherd’s pie, I ate it then was really sick for 2-3 days so for the best part I now completely avoid red meat.

Summary

My attitude with food over the last 14 years has had its really bad points and it’s really good. Due to the severity of my Crohns and now a permanent stoma I live a low FODMAP diet and rarely deviate from that as it’s not worth the aggravation taking risks and being laid up in bed for 3 days. I have a weekly food plan stuck on my fridge so I know what I’m eating and a list of Louise friendly foods so I don’t get bored with food choices, this may be anal but it’s my safety net. My attitude the last 18 months has changed dramatically mainly because I have a Benjamin that can cook and understands my food issues and is happy to eat what I eat. He doesn’t force the issue or question me about what I’ve eaten which is always greatly appreciated.

I will always have this relationship with food. I get jealous watching others eat what I can’t or upset when someone says just try it what’s the worst that can happen. My honest thoughts are be me for a week and then ask me again I dare you.

The food’s I now eat and my body agrees with are Thai food, rice noodles I eat a lot of these. I avoid gluten, vegetables and fruit that’s bad for my stoma and could cause a blockage.

I’m now starting next week #THAITUESDAY and the occasional #FOODIEFRIDAY. This will hopefully show you that you don’t have to limit your food or give up the things you enjoy the most.

I would love to hear your feedback or stories regarding your journeys with food and the dreaded IBD illness, so please feel free to leave comments below.

1 Comment
  1. Hi Louise

    I love this post. I can no longer eat big meals or even a couple of courses and no one who is around me understands that. It’s only little meals I can eat. I go between severe diahorrea when really ill to constipation so my dietititian tells me the low residue when diahorrea to high fibre when constipated, but some high fibre foods still bother me when constipated so I can’t win. I don’t weight a lot anyway as my weight prior to diagnosis was on the lighter side, but right now I can’t get even back up at 7 stone. I have Ensure Plus milkshakes and Fresubin Jucy drinks from dietititian. My big frustration though is that other people around me don’t understand that I can only manage little meals or I’d be in pain with diahorrea or severe constipation for days or weeks.

    I like the side plate thing though, that might be how I get my mum to understand that when I go to her house I can’t actually manage anymore than that.

    Cheers

    Elaine

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