What people with IBD should know

I am often asked, “What would you tell someone recently diagnosed with IBD?” So, this is what I think you should know! Look out for clickable links in this blog, leading to more detailed information! For many, a definitive diagnosis is a massive relief after a long period of being unwell. This does not mean that acceptance is easy, after all, you have just been diagnosed with a chronic disease which has no cure. Do NOT panic, we’ve got this, life is not over! It is worth pointing out that no two IBD patients’ lives are the same. The disease does not always manifest in the same way, and the fact that a treatment works for one person does not mean it will work for another. This makes IBD notoriously difficult to treat. That said, some IBD patients may have one flare, find the right medication straight away and never have another, and that is fantastic! For the rest of us, being diagnosed with Crohn’s Disease or Ulcerative Colitis may mean some lifestyle changes and som

Has having IBD changed your eating habits? Blog series in celebration of World IBD Day

This week, to celebrate World IBD Day on May 19th and in aid of raising awareness of IBD and how it affects sufferers not just physically but mentally too, I will be releasing a series of blogs with contributions from the IBD community.

Blog 6

It’s a strange one, eating habits. What really irritates one person can be completely fine for another so I’m interested in seeing the responses for this one. People that don't suffer with IBD often think that they can tell us something which we haven't already thought of... Because of course we just sit on our backside complaining but not making any attempt to fix ourselves, right?

Eat more fruit and vegetables. Drink more water. Detox. Fuck you.
My response:
In all fairness, there isn’t anything that I can’t eat in the respect that it will bring on a flare, but I pretty much live in a flare anyway. The only thing that I am aware of that brings on flares for me is alcohol so I tend not to drink very often and if I eat too much fibre then I have to remember to take extra loperamide so I don’t crap myself in my sleep. 
If my Pouchitis is active, which is more often than not, fizzy drinks tend to make the gas build it which does hurt but not enough to warrant taking painkillers for.
I dehydrate quickly due to having no colon so if I eat things like bacon or gammon I have to remember I'll need rehydration solution.
I can’t eat a lot in one go so little and often tends to work for me. This also prevents gas building up between meals which ultimately gives me pain so I tend to graze all day long.
I don’t absorb nutrients very well so I tend to crave things my body needs a lot such as salty foods or iron rich ones. You’ll often find me munching on a steak with sweet potato chips. All for the good of my health of course! ;)
Because I don’t digest food fully I have to chew everything properly. I have had two blockages previously and it was enough to make me never want another! I used to hate going out to eat because I would always still be eating way after everyone else has finished but I have got used to it now and the people I eat with have got used to it too. I don’t eat things like stir fry’s anymore because everything needs chewing so well I end up with jaw ache by the end of it. I tend to balance meals by texture rather than nutrition content so if I am having something that takes a lot of chewing it will have to be next to something that doesn’t.
I struggled to eat anything at all as my strictures got progressively worse over a few year period and by the time they were discovered I was put through as an urgent case and was in theatre five days later. It wasn't the IBD itself that has caused the strictures, on the Barium X-Ray of course it wasn’t possible to tell and it was suspected that I had developed Crohn’s Disease since having Jpouch surgery but when they got in there they discovered that the long one was actually twisted intestine and the smaller one was an abscess. It isn't known what caused it but I assume it was scar tissue as the pain was under the old stoma site. The twist had become so narrowed that it was first discovered during endoscopy when the gastro couldn’t get the tiny camera into my small intestine at all and the pain it caused trying resulted in me twatting myself in the face with the gas and air whilst trying to wipe away my tears. It hurt constantly so it didn’t make a difference even going on a purely liquid diet, that had just resulted in me losing a lb a day! The food that caused the worst pain I found was nuts and oats.
Anyway, carry on.

My eating habits have changed totally. No longer can I eat reasonably well, everything, and I mean everything I eat is rubbish. I can’t seem to digest peas, they go all the way through me, without fail. And other green veggies make me need the loo within the hour. I used to eat weetabix regularly at breakfast, can’t eat them anymore either.
-              Ian O’Donnell

Massively, I was always a healthy eater as a kid and so I really miss being able to eat salad and things now! Last week I was really proud as I managed to eat popcorn for the first time in 9 years! I can’t drink beer, I can't eat fruit with a skin, or sweetcorn. And I miss vegetables so much! Meals are a lot more difficult to plan, as it's so variable day to day. I think my other half struggles sometimes as he will fancy pizza, and I can't eat it if I feel dodgy.
-              Claire Farrow

It's changed every eating habit I have, I don't take any food from anyone, if it's not made in front of my I won't have it, because of how severe my Crohn's disease is I can no longer tolerate any form of spices or herbs, so everything I consume is very low flavor but high calorie! I consume about 4000 calories a day to just to stay above 10 stone.
-              Joey Pullen

It's changed them a lot. I can't just grab whatever I want from the cupboard and eat it, I can't just go out for a meal and think "hey that looks good, I'll have that". I have to study what is in everything I buy. I can't go to many restaurants as I can't eat most of what's on the menu, and even when I can, I would have to ask them to leave half of it out which can get embarrassing. I used to love food, I used to love to cook. Now I dread meal times as I don't know how my gut is going to react to it. I could have eaten it 100 times over, but this one time could send me into spiraling agony and leave me in bed for days, maybe weeks. Sometimes it doesn't even feel worth eating at all.
-              Shayne Grant

IBD has severely altered my eating habits. So much so there is not a lot I can eat now , even after my Ileostomy. If its fruit or veg forget it and wheat based products are a big no no. No red meat, just chicken and fish and even then chicken sometimes doesn’t digest. I have a lot of smoothies to try and get the goodness I used to get from food. Before IBD I used to cook from fresh each day, always meat veg and potatoes or anything healthy.  Now it seems if it’s healthy it doesn’t digest.
-              Jane Killin 

It's tragically ironic. During B.C., or Before Crohn's, I loved eating healthy. Cooking is one of my hobbies, and I love all the flavors one can pull from vegetables, fruits, and herbs. Then comes Crohn's, strictures, and a G.I. pointing out that a low-residue diet until I'm under control would suit me better, as fiber bulks the stool making it more difficult to pass. I'm not under control, and scar tissue from previous surgeries create more strictures (narrowing of the intestinal lining), thus putting me in a vicious cycle. I still cook with these ingredients for my family, but I still have to stick to the bland foods on my own plate. People think that IBD means you "watch what you eat" and make sure you "eat healthy" when in fact, it's usually the opposite, depending on the severity of the illness in the patient, as well as where it affects the patient in the digestive tract.                                    
-              Kathrine Zahm

I can only eat sum days due to surgical complications.
-              Diane Nugent

The only way that IBD has changed my eating habits is by making me more cautious about what I eat and more aware of what's in my food. I am now more aware of what is a total No Go for me but I will also weigh up a situation before I eat something. This disease is depressing enough without is making things worse by us having to be denied foods we crave. Obviously I would avoid a food that would cause a severe complication or reaction but if I wanted something and knew it would give me some discomfort for a short while then yes if I really had to have I would eat it.
-              Nicola Bullock

IBD has changed my eating habits MASSIVELY. I used to eat whatever I wanted whenever I wanted, mainly junk food because I have a massive sweet tooth. I never had to think twice about what I ate and whether I would need to be near a bathroom straight away, or how it would affect me after eating. I’ve always been a food lover, and there aren’t many foods that I don’t like so I took much pleasure from eating whatever I wanted whenever! Now I have to be so careful. As much as I don’t believe IBD can be treated and controlled purely by diet, I do think diet has a large part to play in my disease. However, it can be so temperamental. One day I can eat something and be fine, the next day I can eat the exact same thing and it HURTS! How is that possible? So I just have to be careful and assess how I am feeling at the time and what food I am eating. I am lucky in the sense that things such as fruit and vegetables don’t really have a massive impact on my IBD, I know a lot of people with this disease cannot tolerate “healthy” food yet get lectured about it which is unfair. Most things I am fairly okay with (touch wood). I was advised by my consultant last year to try the FODMAP diet to try and reduce the pain and bloating I was experiencing associated with my IBD as well as IBS which I suffer too. This scared me as it meant eliminating a lot of food from my diet, and I felt that I wouldn’t enjoy food or be able to eat anything, it made me so depressed. But when I looked at what I could eat, I found there was still quite a lot that I could enjoy, and most supermarkets now have excellent “Free From” sections with lots of yummy food. I did the FODMAP diet for a good few weeks but it isn’t advised long term, and to be fair it did help my symptoms a fair bit. I gradually began reintroducing food into my diet to see what my “triggers” were, and as suspected it was mainly things like spicy food, garlic type things and onions, so I try and avoid them as much as I can (which is hard as I love them! I still treat myself now and again). It depends on my condition too, when I first started Immunosuppressants it put me into “remission” and for the most part I was ok, apart from pain, and could eat and drink what I wanted. The last 5 months however I have been flaring so have been really careful with what I eat. Nausea has been a massive thing for me recently, and anything I eat has been going straight through me so I went onto Complan shakes for a period of time to try and give my bowels a rest. Now my flare is being treated, I am gradually trying to re-introduce solids but still being careful and having food I consider easier to digest. It still hurts and there are still toilet trips but it’s all about trial and error. What works for one person doesn’t work for another, and as said before, one day a food can be fine and the next not! I try not to worry about my diet TOO much, as there’s little enjoyment left in life when you have IBD so food is important for me, and I try not to restrict myself too much. If I’m invited out for a meal, I would make sure I had no plans for the following days so that I could enjoy my meal and not worry about being bedridden or on the toilet for days afterwards. Luckily, my IBD seems to like chocolate and tolerate it which is great for my taste buds but not for losing weight!! As my condition has been “okay” to an extent apart from the last few months, I have managed to absorb nutrients and keep weight on and actually put on weight which is REALLY hard for us with IBD, so I actually have weight to lose but I know a lot of people need to be able to put on weight. They can have some of mine! 
-              Abby Mae Matthews

I am meant to have a low fibre diet but I find it hard to stick to it i still eat things I shouldn't and I suffer.
-              Vicki Khan

Hell this is a biggy. B4 colostomy bag this yr, I was lactose intolerant, coeliac, got anaphalaxia with certain fish and was diabetic controlled by diet. I had been on the exclusion diet via dietician at hospital & new what I could/n't eat. I had been diagnosed with sever IBS since aged 15, had 2 major tummy ops, scars breast bone to bikin line and open Nissan fundoplication for reflux disease. this meant not being able to be sick or burp, everything had to go south. Troubles started after this with hernia after incisional hernia repair and bleeding from strictures in the throat. after so many invasive tests - no results - having tried far too many drugs I paid privately. after 6 months of more (some of the same tests) I had high cholesterol and bile acid malabsorbtion and high blood pressure all adding to further stress on my body & health. I finally got a private consultant who mapped everything and I had skipped the net, was a so called medical challenge on every level. I had the colostomy surgery late Feb this yr. I expected to be back at work sooner, but hey ho as the consultant said 3rd time lucky surgery takes 3 x as long to recoup. since my colostomy I find that certain foods pass through me ok, others disrupt my health and I feel ill, others cause blockages - a big fear with the thought of cameras, surgery on yr stoma when it's on yr stomach & not the usual rectum site. I tend to eat smaller meals, & still toilet map as my output is even more fluid that b4. I don't really like to eat out much for fear of accidents, and some times starve myself for events such as meetings or presentations so that I don't use the bathroom quickly. This has a knock on effect of embarassing wind noises to which I hate & often fear being judged, & when it's bad can't leave the house. I get dehydrated often, and have to constantly remind myself to keep rehydrated with isotonic drinks. water is just like - drink a pint, wee a pint. sugars fool the tummy so it stays in longer. Dehydration is a frustration. I find a regular eating time works well. I can't eat after 6.30 pm really or all hell breas loose at different hrs of the night. Functioning as a zombie is tuff on no sleep with explosions, cleaning up, washing etc.
-              Sara Williamson

My eating habits are up/down, Fortisips, savoury soups, to normal meals to no meals to a feeding tube.
-              Gemma Willingham

It’s a such a hard balance, you’re not well so need all of the nutrition you can get yet the only things that seemed to be able to be processed without discomfort are foods with rubbish vitamin content. At least when you’re eating chicken its high protein which is good for healing but you can’t even make it exciting with herbs or spices which gets boring pretty fast.
Foods which are fibrous or have seeds and skin are often a problem if someone has strictures as well as flaring, it feels like a never ending battle to try and find a balance that works.

I tried a detox once (desperate times call for desperate measures) my theory being that if I could flush all the bad toxins out whilst replacing all the good gut bacteria with the prescribed VSL#3 it might calm my flare. It was a massive fail and I ended up with a lot more pain than I started with! We live and learn!

It’s been an interesting read. Thank you to all contributors! Sorry I clearly feel the need to keep rabbiting on!

Go back to blog 5 which asks if peoples outlook on life changed after being diagnosed with IBD.