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If a loved one has IBD

If your partner, friend or family member has been diagnosed with IBD, it is hard to know how to help. First of all, it is a good idea to familiarise yourself with some of the disease basics. This wiki and forum are good places to start, but you also need to ask how the disease affects your loved one. What symptoms do they have most frequently? Are there any triggers? Remember, even if you know about ‘typical’ Crohn’s patients, your loved one won’t fit the mould exactly. Every Crohn’s patient is different. And so, learning to deal with your loved one is going to be trial and error, but here are some tips that will (hopefully) point you in the right direction.

Although it is natural to want to help, it may be that your loved one refuses your help at first. They may not want a fuss making over them, especially if they are just diagnosed, as they will want to get back to normal (as much as possible). When they have been interrogated by doctor after doctor, the last thing they want is you constantly questioning how they feel. If they seem to reject you at first, don’t take it personally, but let them know you are there if they do want you.

Comments such as ‘I know how you feel, I have IBS’ or ‘My dad/ grandma/ best friend’s daughter’s teacher’s neighbour has Crohn’s and they manage fine’ are well meant, but often not what your loved one wants to hear.

Some people have said that the best sort of help and advice is the unobtrusive kind- for example, observing what they can eat and making sure that there is always a ‘safe’ food on offer. Or arranging to meet somewhere other than a pub, so they don’t feel like the odd one out for not drinking. If you see that they are struggling with chores, wash up after yourself.

Sometimes people may be sensitive about their appearance changing (losing weight because of illness, or putting on weight from steroids etc). It is probably safest not to mention these changes (even to compliment)- even if your loved one needed to lose weight, for example, they would probably rather have gone a different way about it! And lighthearted comments such as ‘You’re so thin, I wish I had Crohn’s too’ are more likely to offend than amuse, particularly if the person is newly diagnosed.

Medications, especially steroids such as prednisone, can affect the way your loved one behaves. In particular, they may be more emotional than usual. For example, they may cry at the drop of a hat, or get extremely angry with little provocation. Please try not to take this personally. Steroids are renowned for causing mood swings like this. If your loved one is upset, it is probably safest to just ‘be there’ for them. If they are angry, let them vent. (Unless they’re angry with you, in which case make yourself scarce!) Once they have calmed down a bit, you should be able to have a rational conversation. But trying to reason with a person with ‘roid rage’ is not going to work! And remember, it is only temporary. As they taper off the steroids, their moods will stabilise.

Here are some of the ongoing threads where people with IBD discuss the sorts of things that are, and aren’t, helpful.
Unbelievable comments
So, guys, what's supportive anyway?

Finally, don’t forget to look after yourself too! It’s easy to get so caught up with your loved one, that your needs get neglected. Negotiate and compromise to make sure you don’t get overlooked. You may find it helpful to talk to somebody else, either another friend, family member, or even a counsellor, so that you can let your feelings out without worrying about offending or stressing your loved one.

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05-25-2011, 02:59 PM   #1
Senior Member
Rebecca85's Avatar
Join Date: Apr 2010
Location: Nottingham, UK
This was written from my own point of view, some of the things I found helpful and not so helpful when I was first diagnosed. Please add your own views and tips!
Crohn's in the terminal ileum, dxed Jun '10

125mg azathioprine
4g Pentasa
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