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

IBD survey results!

I put a request out for fellow IBDers to fill in an online survey. The results were supposed to be announced on World IBD day (sorry I’m late, life kind of took over) and then my blog software broke! 

Initially I planned to make my job easier by copying and pasting the questions, followed by everyone’s answers but it was then brought to my attention that some people may not want their full answers published as they are ‘private’. I considered this silly as all of the answers would have been published anonymously, therefore no one else would know who had said what, but who I am to decide what would piss people off?!

So, here they are!

Please bear in mind that I am in no way a data analyst!

Has IBD effected your personal relationships? ie with friends

69% of people said yes
25% of people said no
4% of people said somewhat
1% of people said they were newly diagnosed and hadn’t yet had the chance to find out
1% of people skipped this question

The data collected suggested that the majority of people feel they are now better off as they have whittled the wheat from the chaff, so to speak and are now left with only ‘trues friends’. The main reason given for relationships with friends being affected was that plans are often cancelled at the last minute and IBD has had an impact on the amount of social occasions that people are actually able to attend.

Do you think IBD has made it more difficult in terms of dating?

53% of people said yes
14% of people said no
4% of people said somewhat
24% of people stated that they were already in a relationship when they were diagnosed
5% of people said that whilst they are in a relationship, IBD has put strain on this

The majority of people that have had to face dating have found it difficult because of lack of their lack of confidence. Some because of stoma’s and internal pouches being difficult to explain and some because approaching the subject of having IBD initially is a difficult thing to do.

Do you suffer from mental health issues such as anxiety or depression due to IBD?

83% of people said yes
17% of people said no

Over 50% of the people that answered yes stated that this is usually in times of flare.

My favourite response from this question? No although the thought of shitting myself during a flare up is enough to make anyone anxious

Do you suffer from other autoimmune diseases as well as IBD?

32% of people said yes
68 % of people said no

Psoriasis and arthritis are the most popular of the issues stated.

Do you suffer from forgetfulness / memory loss that you think is related to IBD?

52% of people said yes
48% of people said no

I’m unsure how to elaborate on this. Some people said they suffer memory loss but don’t think it is IBD related so they went in the no pile as the question was specifically IBD related memory loss.

Have your eating habits changed much since being diagnosed with IBD?

83% of people said yes
17% of people said no

There are so many varying answers to this question that I can’t even begin to try and tell you the most common answer!

Do you feel you get enough support from your health care system?

59% of people said yes
38% of people said no
3% of people said somewhat

The main issue stated is that there isn’t enough support offered to cope mentally with IBD and also that the waiting time for an appointments is often seen as unsatisfactory.

Do you consider your outlook on life / priorities have changed since being diagnosed with IBD?

92% of people said yes
8% of people said no

The vast majority of people that said yes have a more positive outlook on life now. Not dramatizing things that don’t matter and focusing on the positive things.

A question from the #GetYourBellyOut page: Have you ever had kidney stones?

7% of people said yes
93% of people said no

Quite self-explanatory I would have thought…

My opinion?