I enjoy visiting support forums and local support groups, but for many years I tended to avoided them.
The problem with most support forums (and this extends beyond forums that focus on chronic illness), is that the majority of people on them are having problems.
Obviously, looking for support because of a problem is one of the reasons to be on a support forum, but sometimes the constant barrage of negatively and despair can make your own situation feel much heavier and more likely to trigger some negative emotions.
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For a forum to be successful, it should have a good chunk of supportive members; if you find that everyone is venting and nobody is able to offer constructive advice or a shoulder to cry on, then it won’t do you much good.
One problem I’ve noticed is that sometimes people give bad advice when they should be telling someone to talk to their doctor instead.
You can often find these troubling posts, because they start with “I’m really scared and don’t know if I should go to an ER…”, “I’m bleeding so much and don’t know what to do…”, “The pain is so bad that I can’t even breath” and so on.
Those, my good readers, are not problems for a support group, but for a medical team at the nearest hospital!
I want you to keep in mind the following expectations of most support groups for IBD or ostomy-related concerns:
Don’t go there expecting medical advice. Chances are, the other members of that forum are just like you; they have an experience to share, but they aren’t doctors, surgeons or even nurses. Take any advice they may offer as something you should be running by your doctor first.
Don’t go there giving medical advice! I know that as tempting as it may be to help others, please don’t give advice about something that a doctor should be addressing. This could include: changing the dose of medication, discontinuing medication, even using certain herbs or supplements can be dangerous. The best thing you can say to someone who needs medical advice is to ask them to talk to their doctor or nurse.
You will likely come across quite a few sad stories and situations. Support forums are places where people tend to discuss things that they can’t or don’t want to discuss with family and friends.
Many of the topics deal with frustration, anger, helplessness and the baggage that goes along with being sick, and that’s OK, but if you aren’t in the right head space to deal with reading those stories, they could bring you down.
Not all the advice will be good advice. Just because it’s said or written, doesn’t make it true, and this is especially important to remember when it comes to support forums.
I know that for many of the ostomy and IBD forums I’ve been on, people speak from their own experience, and that’s perfectly fine (and expected).
But sometimes, what someone might believe to be “good advice”, could actually be dangerous.
For example, while on a discussion about homemade ostomy pouch deodorants, someone had mentioned putting fabric softener in their pouch(!!). This is bad advice and should be noted as such.
So while I still encourage people to join and take part in support forums, it’s important to remember their strengths and limitations. While they can be an awesome way to connect with other people who are in the same situation as you, they aren’t appropriate for receiving medical advice (and often not even dietary advice).
If you’re a member of a support forum, please point out overtly bad advice (you can do this while being respectful), and remember what’s generally expected from these groups.
Tip: Since 2017 the VeganOstomy Community Forums have been supporting ostomates in needs and their caregivers. Check them out here.
Question: How has your experience been with support groups (both online and offline)?
My mom is an Ostomate (Feb 2020) due to 23 years of debilitating IBD. We live in India and the support groups seem sparse from our research, the condition less known and product selection skinnier. Your page has given me immense reassurance and relief.
This one is so particularly true. My Mum had diarrhea – I suspect due to coffee. Our friends and family blamed it on spicy food (which traditionally aggravated her IBD) and dismissed that coffee could have caused her diarrhea. Upon further research I discovered coffee could cause diarrhea. So this article about how to support is spot on. Thank you for your project of passion and wishing you all the best!
Thank you for finding the website, Karina. Has it helped your mother to be off coffee? I know that sometimes coffee can have rather immediate and unwanted effects for some people, while it’s completely benign to others. Same with the spicy food you mentioned! Ironically, when I was having a difficult time with IBD flares, spicy foods were better tolerated than bland food! Anyway, best of luck to you and your mother.
Hi, Thank you for this site. I have an iliostomy and have just completed 8 weeks post op. Question:
Before my operation I was vegan. I want to reintroduce things like spinach, broccoli and cauliflower in to my diet. If you liquidise them does this mean they become digestible. What I mean is, is it just the bulk that causes a problem/blockage or even liquidised will they pose a problem? Same with mushrooms. Is it just because they are fleshy that they can block the stoma or is it something in their content that that causes difficulties? I’d love an answer because I’m so sick of eating white bread rubbish and crave to go back to my old diet. Thanks.
Hi Fiona, that’s a great question.
If you were to blend all of those foods (i.e. to make a soup), then the risk of a blockage would go down to almost zero. I say almost because blockages aren’t always a function of food getting stuck – sometimes there’s a kink in the bowel that causes it.
But blending is a great way to start, then you can moved to well cooked (to the point where food is mushy) until trying raw or lightly cooked veg.
Chew well, take it slow, and enjoy :)
You have been a source of enormous help and support to me, mostly because you give information, not advice! You have LOTS of information, not just for getting started, but for living with ostomy. You have a positive outlook and you’ve ferreted out lots of tips and tricks that are so useful. Thanks very much!
You are quite welcome! Thank you :)
Hello Eric, I am also a Vegan Colostomate. Great website and your are a videographer as well, good job clearing up the mysteries involving the due diligence of being informed. You do not seem to be harboring a hidden agenda, this helps build confidence and grants you the opportunity to give sound advice.
I need to get my invention reviewed. I have sold only 4 over the past year and this is because of some reason I am completely oblivious to. Like you, I only have an intention to help people like us.
Best Regards,
Mark Young
The first UC forum I found was very positive; it let me know there were other people out there who were going through the same thing I was. A lot of them touted alternative medicine to maintain remission, which was kind of disheartening because various diets and supplements have yet to work for me.
My experiences with Facebook support groups have been overwhelmingly negative. I was part of a very large group where at least half the members thought IBS and IBD were the same thing. The mods didn’t want people discussing surgery lest the newly diagnosed be frightened by the realities. One guy posted a photo of his ostomy and people freaked out and kind of shamed him for it. I left the group after that.
I have found Twitter and Google+ generally positive. It is really helpful to see other people having frank public discussions about their IBD symptoms and treatment.
Thank you for sharing!
It is hit and miss, but we are very fortunate to have so many options available for support: social media, local groups, IBD/ostomy friends, email, online forums, Facebook groups, etc. If one doesn’t work, try the next =)