About a month ago, I shared my frustration at having symptoms despite not long being in remission. I decided to create the IBD Remission Survey and now I am blogging about my findings. If you took the survey, thanks so much for your help! Over 250 people joined in! So, without further to do, here’s the results…
How long does IBD Remission last?
Interestingly (and perhaps depressingly) the shortest period of remission scored the highest percentage of votes. Although over 30% of the vote had experienced remission of over 3 years- with 15% of people voting 3-5 years and 16.4% voting over 5 years. That’s more like it!
How do you know if your IBD is in remission?
Over 50% of people who took the survey were currently in remission. Hurrah! Most people went by a combination of their blood tests and symptoms but 35% of you actually went just by your symptoms alone.
Do symptoms improve when in IBD remission?
Wow, that’s quite depressing. However, it also gives me (and hopefully you) some comfort to know it is not the end of the world if we have bad days- it doesn’t necessarily mean we are in a flare-up. Luckily, 32% of people felt only 1-2 symptoms remained when in remission; followed by a further 17.6% who noticed a big improvement. Sadly, 7.6% of people do not feel better even when clinical markers improve; showing just how different this disease can be!
How many times a day do people in IBD remission go to the toilet?
I must admit, this is the question I was most curious about! 50% of people voted that they go to the toilet 2-3 times a day when they are in remission. A further 23% go once a day or less. I was surprised that 5% still go to the loo 5-10 days a time (and this question excluded those with stomas or surgery). Those with stomas obviously go to the toilet more, with most commenting their toilet trips doubled when they were not in remission.
How often do people with IBD have diarrhea when in remission?
This was a bit of a mixed bag so I will share all the results below:
- Less than once a month- 19.2% (wish I was one of these lucky folks!)
- Once a month- 15.2%
- A few times a week- 18.4%
- Once a week- 16.4%
- Once a month- 15.2%
- Many times a day- 8.4%
- Always liquid due to stoma or surgery- 9.6%
Do you still stick to a diet when in IBD remission?
20% of you said you still had to follow a strict diet when in remission (I hear you!) with a further 42.8% saying you still followed one but might relax slightly. 14% didn’t change their diet- whether flaring or in remission.
What IBD symptom do you notice the most when in remission?
Fatigue was by far the most commonly reported symptom people had when in remission, followed by:
- Bloating (59.6%)
- Joint pain (54.8%)
- Loose Stools (52%)
- Stomach Pain (47.6%)
- Skin Issues (28.8%)
- B12 Deficiency (24%)
- Mouth Ulcers (22.8%)
- Anaemia (22.4%)
Can you live life to the full when in remission?
This question was largely positive: 44% felt they generally could with adaptations, while a further 10.8% felt IBD didn’t interfere with life at all. Only 4% felt said IBD significantly hampered them in remission.
So what does remission meant to you?
I asked you to share what life looked like with IBD. Here’s what some of you said…
In remission, the horrific, labour-type pains subside. The pain doesn’t go away completely but it isn’t as debilitating.
Remission to me means not staying home because I’m worried about what could happen and if there is a bathroom available. Having more control over my life.
When in remission I live a normal life again as long as I follow my adapted diet
Even when in remission, IBD is often at the forefront of thought for me. Ideally, remission means my symptoms are well managed, I’m at a healthy weight, I have a good appetite, my blood work is in the normal range and I feel well balanced.
Being able to do what I want, when I want. Not having to let people down.
Remission to me is feeling okay 90% of the time, I don’t believe I will ever be ‘symptom-free’, but when I feel I can lead a ‘normal’ life the majority of the time.
I really hope you found this survey useful!