A question for the Ulcerative Colitis Community

What tools or resources have you found most useful regarding your or your loved one’s condition? This could be a website, a specific organization, or an app for your smartphone. What makes this resource (or resources) useful to you?

Answers from the Community

I enjoy Pinterest and finding recipes that are low in sugar or low in carbs, that will not cause a spike in my blood sugar numbers, thus making me feel healthier and happier.

I’ve found several resources online, especially in like forums or support groups, there’s people IBD out there. There’s one website in particular, it’s called, ihaveuc.com and there’s a lot of people on there sharing their story, sharing their medications they’ve used, just their experiences, and there’s a lot of people that have been there for a while. Like me, that were diagnosed like … like I was diagnosed in 2011. And there’s people that are just newly diagnosed or just don’t know what’s going on. So it’s been a good place. I would say the online forums has been a good place to talk to other people to not only know you’re not alone, but to help out anybody else while you can, when you can.

The Crohn’s and Colitis Foundation website has been really helpful just with information about the diagnosis and different treatment options and just describing what the condition is as a whole. As well as my friends and I have a support group over Snapchat of people in their twenties with IBD, and actually it’s really helpful too because it’s a group of people going through similar things that have experienced it and can help you kind of work through it. So it’s just really helpful for me.

I think the biggest resource for me has been the Girls with Guts Facebook Group, because everyone is still always learning, and for me, having that resource of other patients who have been through there. Like if I have a question, I can post it, and within a few hours, I’ll have at least five to 10 responses of people who have been there. And here I tried this and it worked. I tried XYZ and it didn’t work. Have you thought about this? Have you thought about that? Because for a lot of us were experiencing complications that are uncharted territory. For me, I’ve become sensitized to every single ostomy adhesive out there except for one. Hydrocolloid Brava Coloplast sheet that I have to stick under everything that touches my skin ostomy-wise and I was having horrible contact dermatitis. And I posted what was going on to the forum, to the Facebook group, and within a few minutes, someone who I had met at a retreat a few years ago for Girls with Guts, commented and said, “Hey, I had the same problem, and have you thought about making an appointment with the dermatologist. Here is a link to a journal article, and a dermatologist prescribed me a steroid inhaler to apply topically to my parastomal skin. And because that’s a dry powder, it won’t cause your ostomy adhesive not to stick.” And that was such a relief to know that not only was I not alone, there was a practical solution out there, that my doctors didn’t know about, but that was okay. I made the appointment with a dermatologist locally, brought the journal article, and two hours later was at the pharmacy and picking up my steroid inhaler to use around my parastomal skin, and it completely cleared up all of my skin breakdown, and to the point where I could actually get a couple of days out of a bag, which was huge, because I was changing my bag at least a couple of times a day because I was having horrible leaks because my skin was such a mess. So that kind of resource or tool of just having thousands of women who have gone through this at your fingertips, at all hours of the day. We’re from around the country and for some of us around the world, that is huge. It’s not just knowing that you’re not alone, but also having… Professional patients become our best caregivers. Like we’re our best self advocates. We know what works, and we know why things work, or we’ve tried everything. And if you’re having a problem, there’s someone on the Girls with Guts Facebook Group that has had that problem before, and can tell you what happened with theirs, and that is just invaluable for me. I know when I went to the Girls with Guts retreat, my first one back in 2014, was right after I had been hospitalized for a really long time because of complications with my J-Pouch formation surgery. And I still had a diverting ileoileostomy at that point. And I met somebody who was also in their young twenties who had been through the J-Pouch surgery only a year and a half before me. And she was doing really well, but she texted me after my take down surgery when I had a new J-Pouch like every other day to check in and be my cheerleader, and give me advice on how to deal with butt burn and just check in. And that was just so powerful because my wife, or was my girlfriend at the time, and was trying to support me as best she could. And so was my family, but having someone who has actually been through it and actually knows what they’re talking about is just great to have that kind of resource and friendship.

I guess really I don’t have much of a use for resource. Well, I guess the one thing I have used is the Facebook group for people that are suffering from Crohn’s and ulcerative colitis with other patients. I do belong to that group and sometimes talk to people about what’s going on. Sometimes there’s information about different treatments or things that I’ve never heard of. So that’s helpful.

Honestly, the biggest resource that I have found are Facebook groups that are associated with UC or IBS or IBD. And I came across one Facebook group, maybe around two and a half, three years ago. And ever since then, I kid you not, I feel less alone because of reading other people’s stories, understanding that other people go through what I go through on a daily basis. Those have been a really, really big help. And then obviously my support system, like I mentioned earlier, my husband and my sister, are definitely people that have helped me a lot. But I would definitely say that these Facebook groups where people post about asking for advice or just posting what happened today in the life of someone with UC have been very, very helpful. I also follow some UC healing Facebook groups, where they talk about how to use non-medicinal ways to heal yourself. So those are some resources that I have come across that have been very beneficial to my growth as a person with UC.

I actually most of the time for stuff like that, Reddit, Instagram, or actually TikTok recently. One way I’ve been checking with fellow spoonies or other people living with chronic illnesses.

Unfortunately, I don’t think I’ve found any resources that have really been able to help me through this. Well, that’s not true. I would say Mount Sinai, their website on gastroenterology and all of this stuff is been the most helpful. I’ve tried support groups. They’re very bad. I’ve tried others, like Facebook groups, and they’re very sad. And they have a right for that, but at the same point, I’m not looking to commiserate. I don’t want somebody to kind of meet me where I’m at and we stay there. So I would probably would say the Mount Sinai website for the information. They are currently reaching out to all of their patients for a support group with medical professionals. And I think I’m going to be interested in that. So my answer over time may change, but currently I would say that there’s really nothing that I’ve used other than informational websites that have really been helpful.

I would say Instagram’s the biggest tool because if you hashtag colitis or IBD or even Crohn’s and colitis, a lot of things come up, and it’s so relatable. And you could find people that have similar experiences to you and feel that you’re not alone. It’s good and great to talk to your friends about it that are supportive, but they don’t actually understand what you’re going through on a day-to-day basis. So, connecting through Instagram with people that actually experience it’s just a really good feeling to know that you’re not alone.

I think the most helpful resource has been the Crohn’s and Colitis Foundation. I really only utilize that through their website, but I know that they also have a lot of other events going on that are an extension of their foundation. I mean, it’s really an organization tailored to, as the name of it suggests, people with Crohn’s or colitis. And it’s a really helpful website just for different resources or trying to find a doctor or finding information about your condition specifically or learning more about different treatments that you might have and different side effects. And I also think The Mighty is a useful organization. I think it’s a mixed bag, but I think at times that can be helpful because it’s a community of people who have certain medical conditions that are usually rare. And UC is one of them, and they have another community for Crohn’s and one for inflammatory bowel disease. And that can be a great support system. And I think that that’s not necessarily if you’re looking for information a place to go, but if you’re just looking for a listening ear, that would be a pretty useful resource.

I’ve found that online forums are really useful, because drug companies obviously want to present the best that they can with the product that they’re giving. But actual real life people’s experiences with those drugs has been helpful. And real life people’s experiences with how they’ve done natural remedies has been helpful. And listening to people’s actual experiences has been the most helpful. So online forums, Facebook communities, those have been the best resources for me.

I guess the most important resource for me has been the internet just in general. Just being able to go online and speak with other people who have this and I find them through Reddit, through blogs, through Facebook, through Instagram. All of those have been incredibly helpful in connecting with other people who have it, who have similar symptoms and what worked for them. And without that, I don’t think I would’ve ever came to the conclusion that maybe I’m gluten intolerant. After the infection that I had, I became gluten intolerant and my doctor didn’t want to do anything about it. He said, “That’s probably not a possibility,” but speaking with other people online, that’s a very common symptom and they’ve been very helpful in helping me find my symptoms. And I also use the poo tracker, I think it’s literally called Poop Tracker App. I can see how many times a day I’m going to the bathroom, what it looks like and I can write notes on it. And then I can show that to my doctor like, “This is what’s happening with my body.” So those two things have probably been the most helpful.

By far, my most helpful resources have been Instagram and Facebook. I have connected with the large ulcerative colitis community on both of those places. And they’ve been very helpful as far as just finding people who know what it’s like to live with this, for getting advice on dietary measures, or medications, or supplements, and things to help. And just having a place to talk to people who know what it’s like to live with these conditions. I also find help and support with the Crohn’s and Colitis Foundation. I’ve participated in fundraisers through them. And it’s nice to be able to feel like you’re making a difference and helping with things to fight against ulcerative colitis. And also, again, being around other patients who have the disease. It would be nice if there was a central place to go where people could give recommendations on doctors, or dieticians, or things like that who they like, because that can be hard, as a patient, to find good medical care.

I think the resources that has been the most impactful for me is really the community, the IBD community and I’ve connected with the IBD community through like the Crohn’s and Colitis Foundation. They have a lot of great opportunities here locally. I’m actually a facilitator of a support group in my area and I think connecting with other patients and just learning a little bit about their journey. I also have been to an IBD conference and I found that really helpful to kind of be up-to-date with research and talking to medical providers that are outside of my normal GI doctor and also some of the prescription manufacturers, they have representatives that come in and just help to better understand how their medicine works. The current medication I take Entyvio, has a really great video on their website that kind of demonstrates how the medication works for people with ulcerative colitis and I found that super beneficial, not only for me but to my spouse and my family, to help them to better understand my condition and what this medication does for my condition.

I use the ulcerative colitis page on the internet. I am also involved in a lot of support groups for people with ulcerative colitis. I think the best way to know something, or to get information, is to talk to people who have the condition like you. So we do have a lot of groups on Facebook that I’m involved in, and we talk to each other, and kind of explain situations to each other. So I feel like being connected to people who have it, and can tell me about what they’re dealing with. And I can tell them about what they’re dealing with. We kind of support each other there. So probably Facebook support group.

The Crohn’s and Colitis Foundation of America website is a very useful tool. Because not only do they explain what IBD is, they also include different organizations and charities such as Teen Challenge and Spin for Cures on their website. And being a part of these organizations has really helped me connect with others who have IBD, which is one of the greatest tools. Because you get to talk to a person about their personal experience and their own testimonies of how they deal and handle IBD.