Ulcerative Colitis

Living with Colitis

In my opinion, overall balance of lifestyle and diet is a very important aspect of easing colitis symptoms and maintaining remission. I see many UCers asking what they should eat or do to help their symptoms, so I hope this page will provide some general ideas on how to approach life positively with Ulcerative Colitis.

In the same boat

I'd like to start this page by stating that the info is not aimed at any particular type of UCer. There are many different types of approaches to UC, and I don't judge anyone on how they go about it. As far as I am concerned, we are all in the same boat, so we should try to remain openminded, helpful and positive towards each other.

Some unlucky UCers have no choice but to go a certain route; others are lucky enough to be able to try different things - some find success; some notice improvements and others see no change at all, so it stands to reason that not all of the info will be useful to everyone.

It's important that we remember, as UCers, to be respectful of others who approach UC in a different way to ourselves. As the great RG said, "just because you don't agree with someone, it doesn't make you right".

Keep Learning

Keep learning about Ulcerative Colitis

One of the most important parts of being able to help youself as a UCer is to learn as much about the aspects of colitis as possible - how UC manifests; possible triggers; ongoing research and studies, flare-up triggers, as well as experience of other UCers, such as regimes that have helped or caused problems for them.

The more in-depth and wider your field of knowledge, the more informed your decisions and discussions about UC can be. This can only be a good thing, whether you are discussing a course of action with your Doctor, a nutirionist or another UCer, it will hopefully give you more opportunities to improve your own situation.

It's always worth remembering that Colitis is a very individual disease, so staying open minded; listening to different opinions and considering other viewpoints is very important - we never know where or how we might uncover a piece of information that helps our situation!

Hard Work

Seeing results from diet and lifestyle changes takes hard work, but if you speak to any of those who have been lucky enough to ease their symptoms by doing it, they all say it's worth it.

I don't want to sound like I'm pointing my finger at any particular type of Colitis sufferer, because I've been there myself! I've learnt the hard (and long) way about making changes. Ulcerative Colitis takes work to make changes

A few years back I thought I was different from the UCers I read about, I thought there was no point starting a diet or a regime because I would always eventually get back to 'normal'. Basically, I didn't like the thought of cutting things out of my diet and making changes to my lifestyle - it seemed like hard work. It's worth mentioning that my colitis was mild for the first years.

It took the worst flare-up I'd experienced to wake me up to the reality of my situation. It gradually dawned on me over the following couple of years that actually, things wouldn't remain the same if I carried on doing what I wanted. The reality was that this type of thinking had resulted in my flare-ups getting closer together. I realised I would have to work in order to see changes.

I now have a completely different diet to the one I had at that time. I take a specific set of supplements that I've landed on through trial and error, and I have a healthier lifestyle as well. If you had told me how much I would change back when my colitis was mild, I simply would not have believed it!

Quick Fix

In Colitis forums and groups I often see UCers asking which supplement they should take. I have done the same. What tends to happen is that there are lots of different answers (as is the nature of colitis), but the UCer decides on the supplement that has the most positive feedback, which is completely understandable.

However, if the UCer decides to follow up later with a report on their progress, often the story is that there is no change, which is confusing, frustrating and disappointing (for everyone - we all like to hear success stories).

There could be various reasons for this, however, mostly it seems that only one change was made e.g. the new supplement was taken by the UCer, but diet, lifestyle, stress, exercise etc. remained the same.

Ulcerative Colitis quick fix

Unfortunately, as I have learned, the harsh truth is that making a single change lessens the chance of the supplement making a big difference to the path of Colitis (there are always exceptions of course). As a general rule, you will find that those who manage to improve their situation have made a number of changes, and often over a period of time, using trial and error.

A 'quick fix' is unlikely, and for many UCers, simply adding one supplement may have limited results. It's not very nice to hear, and it's something that has taken me a long time to accept - I would have loved to have made a single change that got me into remission. Unfortunately it didn't happen, but then, no one said it would be easy!

Personally, I had to change various aspects of my lifestyle and enviroment etc., to see the improvements. I was as surprised as anyone that my remission period kept lengthening, and I wish I'd stayed focused and disciplined enough to keep it that way.

The changes I made resulted in the longest remission since I was diagnosed. It lasted approximately 2 years and when I finally flared again, I looked at my diary to see that I'd gradually gone back to a lot of my old ways!! It was annoying to discover, but understandable after such a long remission.

As the 2 year remission progressed, I'd gradually forgotten about the previous flare-up and how much I'd wanted to get better. I thought could control my UC without having to work at it because it went on for so long (just like I did when initially diagnosed). Basically I'd become over confident.

If you're lucky enough to experience complete remission, staying aware of your condition is important - don't let symptoms creep back in!

Learn in Remission

Here's something that I alluded to in the last section - to stay aware of your colitis, even when in remission, is important.

After many years with ulcerative colitis, I now believe that what you learn during remission is as important as what you learn during a flare-up.

My gradual decline back into a flare up after my 2 year remission is a good example of why we need to do this. Had I stayed focused for the whole of the 2 years, I would have greatly decreased the chances of the next flare-up starting. With colitis, we can never say for certain, but because I've kept a food/symptoms/meds diary for a few years, I can see exactly what I was doing on the lead up to the flare.

Bascially, I let things slide exponentially over a period of a few months. I'd increasingly replaced good choices with unhealthy ones, and they built up. So much so that if I look at my diary, the start of remission looks completely different to the period near the end. It could almost be a different person (one who'd forgotten he has colitis).

It's interesting that in the forums you will often see UCers say that they can eat anything they want during remission, but have to be careful during a flare up. I now believe that the imbalance between these approaches could well be a factor in flare-ups returning. Although I understand the euphoria of reaching remission, it has slowly dawned on me that after finally reaching it, changing back to the same lifestyle as before the flare up doesn't make sense.

To reiterate, I'm not telling anyone how to approach their colitis, I used to eat anything I wanted during remission - I made the same decisions in the past. I'm simply sharing what I've learned, and what I am learning, just in case it helps any UCers out there.

Balance

Ulcerative Colitis Balance

Which brings me nicely onto balance. If I look at my diary for three quarters of my long remission, it looks balanced. When it comes to diet, exercise, stress and sleep, in relation to colitis, balance becomes a very important aspect.

I've broken down the different areas below, and given examples of how I changed things. Hopefully, they may give other UCers ideas on how to improve things if necessary.

Diet

For those with colitis, the craving for something interesting to eat is very real, and understandable - I've been there and done it many times. The joy of eating something tasty that you couldn't eat during a flare up is difficult to explain to those who don't suffer from UC.

During my longest flare up, I would literally daydream about roast dinners, cheese burgers, spaghetti bolognese, cheesecake etc., etc. Apologies if you're mouth is starting to water!! I couldn't even watch Man versus Food!

Now, after keeping my food/symptoms/meds diary for so long, I've realised that it's actually ok to occasionally have the things I crave - but only occasionally! The problem is that what a UCer craves, is often a 'normal' diet for others. So it's very easy to fall back into the trap of eating pre-flare foods often, because it's what everyone else is eating all the time.

My aim now, is to introduce balance to these things - that way I'm not telling myself that I can never eat them again. I'm simply saying, 'it's ok in moderation'. For me that can mean, perhaps it's ok to eat spaghetti bolognese once a month (even then I may use less sauce), for other UCers it will be different. Maybe I'm being over cautious, but my choice is based on what my diary says, and what I'm comfortable with.

Sleep

Ulcerative Colitis and rest

I have never been the best sleeper, but I realise if I sleep well, I feel good the next day. Studies have shown that lack of sleep can promote inflammation, so it is important to try to address it.

Many UCers feel tired when in a flare-up, I've had the same feeling, partly due to lack of sleep because of symptoms, and also because the inflammation made me feel drained. As I've pointed out elsewhere in this website, I believe it's important for UCers to get as much rest as possible when in a flare, especially when feeling tired (even during the day), just as you would with other illnesses. Of course, this isn't always possible because life goes on.

At the start of my two year remission, I decided to invest some money in a new bed because I felt it was important - I could literally feel the springs in my old bed, and it was also causing issues with my back!! I also bought some blackout blinds for my room. My old blinds would let the light in, which was very noticeable in the summer months if I happened to wake up early.

When I finally got into remission, I made a conscious effort to cut out napping during the day because I found that if I did, it affected my sleep at night.

Exercise

Ulcerative Colitis and exercise

A very important part of staying healthy when done correctly. Studies have shown that the risk of many diseases is lowered dramatically when exercise is carried out regularly. Getting oxygen into the system by raising the heart rate has a beneficial effect on our blood cells. It also releases endorphins that make us feel good, so it helps our general state as well - have you ever felt lethargic, been for a walk and come back in a better state of mind?

When you mention 'exercise', many people think of the more extreme forms e.g. running or workouts. But it can also mean walking, cycling or swimming for example, basically, anything that raises your heart rate.

It's just as important not to overexert yourself by doing too much exercise, studies have shown that this can also cause inflammation. Before the flare up that led to my two year remission I was pushing myself quite hard with exercise, doing something called the 'Insanity Workout' (the name tells you enough ) and also running 8 miles around 3 times per week in all weathers (extremely hot sometimes).

Although I felt good, I was pushing myself too hard. So after the flare up and at the start of the two year remission, I made a decision to continue with cardio style exercise, but at a much easier rate. I dropped the distance I ran from 8 miles down to 2 miles, and I no longer did the workout. I noticed that I got the same endorphins and feel good factor, but I recovered more quickly and felt less tired.

Stress

Ulcerative Colitis and stress

If you look at many UC forums and groups, you'll know that stress is mentioned a lot. The medical profession don't believe that stress causes colitis, but admit that it can be part of the mechanism that starts it. I believe prolonged stress can change the make-up of gut bacteria and lead to colitis - whether that means stress caused it or it was part of the mechanism, I really don't care! The important part is that stress plays a large part for many UCers.

Stress for most people means something psychological. However, it's worth noting that extreme physical stress (such as an injury caused by a car crash) can lead to the same inflammation / symptoms. You will find many UCers who state that their colitis started after an accident. Perhaps the over-exercise before my flare-up was a form of physical stress on my body? I'm just guessing, but you should consider all angles when thinking about colitis.

De-stressing is an important aspect of trying to relieve colitis, whether it means doing exercise; relaxation techniques such as meditation or finding a relaxing hobby, getting into a more relaxed state of mind is beneficial.

Acceptance

Ulcerative Colitis and acceptance

An overall acceptance of colitis was an important step for me. I've mentioned that I didn't see it as a chronic disease because it was mild for years. I didn't pay much attention to it until I had a bad flare. Even then I was convinced it was a blip!

However, as time has passed I've accepted that colitis is part of me, and I have to adapt to help alleviate it. At first this can seem like hard work, but we humans are very good at adapting to situations and eventually I didn't notice the changes I was making, they became simply what I do and who I am.

Acceptance was something I hadn't really thought about until I was reading posts by a UCer on a facebook group who is very positive. It dawned on me that their attitude was a great way of relieving some of the aspects of colitis that are difficult to deal with.

As an example, urgency can be something that changes how sufferers go about their lives, avoiding certain places, journeys, situations etc. I have been there and know how the mind can play tricks as you're about to walk out the door. Stress levels rise, which of course increases the sensation of urgency. I've also had accidents where I simply could not get to a toilet in time! For those UCers who experience an accident because of urgency, the first time it happens can leave them feeling degraded, alone and as if the disease has taken a downward spiral.

It hasn't of course, urgency just happens to be a symptom of colitis, and if you can accept that it might happen, you can lift a weight off your shoulders. I'm not saying it's an easy thing to do, but the positive outlook of the UCer who simply said, 'if it happens it happens, life goes on', helped me look at it in a different light. If I'm experiencing urgency, I tell myself the same thing as I leave the house - if it happens it happens, I've done all I can. The change of mind and acceptance feels a lot less stressful than worrying about it the whole time.

Have a plan - be pro-active

Finally, I want to mention that it's a good idea to be pro-active with colitis, which is where learning about it comes in as well. The more approaches to colitis I read about; the more UCer ideas I saw; studies I found out about, the more ideas on how to approach colitis it gave me, which in turn, made me feel more positive.

There are so many thing to try that it's a good idea to make a plan, which helps you work towards a goal. For example, I found a study about colitis which used the Boswellia Serrata supplement, a specific dosage was taken for 6 weeks and at the end, improvements were made by some of the UCers. So as part of my plan, I decided to follow the protocol of the study and take Boswellia. I marked the start and end of 6 weeks in my diary, then noted any changes during that time.

Don't try to make too many changes at once though - it becomes confusing and impossible to work out what is helping / causing problems. Make a list of ideas, approaches, diets etc., research them; decide if you want to try them and do one or two things at a time. Leave a few weeks until you start something else. A good marker seems to be up to 6 weeks e.g. for food or supplements to show systemic changes, studies seem to take 4 to 6 weeks.

As ever, always try anything new in small amounts to check for negative reactions, and if you notice anything negative, stop straight away.

...and if you notice improvements, remember to share it was us UCers! Positive stories are great to hear, and help to spread more knowledge.