A question for the Ulcerative Colitis Community

What resources do you wish you had to help manage your or your loved one’s condition, but haven’t been able to find? What would your ideal support resource be, and how would it help?

Answers from the Community

I don’t know that I really feel like I’m missing any support in between the web and information that the doctors provide and magazines made specifically for diabetics. I think I pretty much have everything I need at my fingertips.

This is a good question. I’m not really sure. I think it would be great if I had a resource of like a website or forum we could talk to where it had experimental treatments being done or like a forum that had the latest procedures or just a scenario where there’s advances in IBD research and for causation and also to just help people. That’d be a great thing I would like to see out there.

I don’t really think there’s any resources that I’m lacking. I think I’ve been very fortunate to find things that have helped me through it, and to have people that have really been supportive and helped me provide, or help providing me with resources that I needed. And I think when I was first diagnosed, if I had had the GI that I have now, it would have been better just because my diagnosing GI was not very helpful in describing the condition to me. So I wasn’t even sure what I had just been diagnosed with. So I think if every GI was like my current one, I think it would be a lot better of a situation.

I wish that I had a local support group. There is a Crohn’s and colitis support group locally, I think. But I tried to contact the coordinator for it and never got a response. I think it meets 25 minutes away from me. I tried to start a kind of 20 and 30 somethings women’s support group for Crohn’s and colitis, like a Girl’s with Guts local chapter, but it kind of petered out because I just couldn’t get the word out or it just… nobody really showed up. So that would be, my hope would be, to start or find a group of women, but also with guts locally here in Sacramento. That would be really great. There is a few groups, like I know Philadelphia has one… Philly area has a really strong group that has actual meetings once a month, then like, holiday parties and just really strong friendships. And that’s what I feel like I’m lacking here. I just don’t have an in person support group.

I don’t know if there’s a specific resource that I would like to have that I don’t have. I just think that there needs to be some more options as far as medications. Some of the medications are so expensive, and insurance doesn’t seem to want to cover a lot of them. I think that’s the biggest problem right now.

One resource that would be really helpful is a nutritionist alongside a GI. Oftentimes, when you go to GIs, gastroenterologists, it’s really all about medication. They want to put you on a certain type of medication, which makes sense because medication is important. But alongside medication, there are necessary lifestyle changes that have to be made as well, that can really help an individual with UC. I think that would be a big asset if you still were a nutritionists that specifically worked with patients that have UC and IBS and IBD, and help us figure out what kind of changes we can make. And again, everyone is so different. One UC patient can drink coffee while another one can’t. Really kind of breaking down that individual’s… figure out what their stomach can’t, and really having an intimate conversation about, this is what you can and cannot eat, would be such a helpful resource I think. And unfortunately, I haven’t been able to find that yet. I have talked to a nutritionist, but they were weight loss nutritionists, and a lot of things I think that they mentioned to eat I can’t eat because it’ll send me into a flare. That’s definitely something that’s needed.

This one’s a tougher one. When I was first seeing my infusions, I wish there was more of a source for different ways to get infusions, like home, infusion center, doctor’s office. Would have been nice to have a rundown, like those, the pros and cons, and figuring out easy ways to get to them, pretty much.

My ideal resource would probably be like a Facebook Support Group or something where folks weren’t as unhappy. I mean, I don’t want to take from anybody’s experience from this, but I think that there’s a lot of pessimism and unhappiness, and there’s a right for that. But for me personally, I would do better with a group that doesn’t focus solely on the negative, that shares resources, or research, or different opportunities, or anything that’s not so sad and upsetting all the time. And, I think that would probably be the most beneficial thing that I think a lot of folks would be able to utilize. I’ve seen the research for a positive mentality and the effect on somatic body and sorry, somatic symptomology and overall wellness, and I think that’s very important for the research. Ideally, I think ideally it would just be a little bit better to not have something so upsetting and sad because I think for individuals with this disease, I think it takes a very large toll on them. And, I wish that there would be a more positive, affirming program, or group, or whatever to assist and maybe challenge their thoughts a little. But overall, just promote more of a positive mentality on the situation while not negating the people’s lived experiences with it.

I know that I said that diet’s different for everyone, but I wish my doctor would refer me to a nutritionist, or have a cookbook or something specific for colitis. It’s just all over the place and there’s so many different resources out there. One page says that I could eat this, another page says I can’t eat that, the same thing. So I feel like it’d be helpful to have a nutritionist to help me track everything and see what’s actually good for me or not. Online support groups are nice, but… I don’t know, maybe if there was a support group that you can meet and actually make friends with people, but at the same time, if I’m in a flare, I’m not going to want to go out in public or anything. I don’t know. I guess a nutritionist would be a good resource for me to have.

Something I used to look for a lot when I was a little bit younger, was some kind of support group for people that were my age that also had UC in my area. And I never really found one. And I just stopped looking because it just didn’t seem to be that there was one that was close by that had people with the same condition. And that’s really been the main one. I think that my ideal support resource would be a local organization that has an active membership of people who have UC or Crohn’s. That has different functions, it’s not just a support group or an office, but just an all around resource for people who have those conditions to learn more about their condition and contact other people who have the same condition and share their experiences with each other. I think that would help because listening to somebody else, who’s also gone through everything that you have is always just makes you feel better and makes you feel a little bit less alone and just more supported.

I wish that there were more support groups accessible. I tried to go to a support group early on, and there was only one offered locally, and it was very lightly attended and not very well moderated. Having a support group, whether it was over the phone, or in person with people who are experiencing the same types of things, but also was moderated by some sort of health professional, that would be the most helpful resource for me right now that I don’t have access to.

A doctor. A doctor who listens, a doctor who listens to what I say, the symptoms that I’m having and says, “Okay, let’s look at the whole picture,” instead of… I feel like my doctors have always taken the symptoms separate and just try to treat the symptom. “Okay, so we’re going to treat the diarrhea.” “Oh, you have gas? We’re going to treat the gas.” “Oh, you have heartburn? We’re going to treat the heartburn,” but never trying to find the underlying condition, what’s really causing this. So the ulcerative colitis is causing the diarrhea, but there are other things that are exacerbating my ulcerative colitis that the doctors just don’t want to talk about. They just want to put me on all this medication. And I just want a doctor to listen to me, a doctor to listen to me say, “I understand what you feel. I see what you’re going through, and let’s work to find a cure for it, or find a way to manage it,” instead of just going, “Well, we don’t know what it is. So you have to deal with it,” which is literally something a doctor told me once in the hospital. This didn’t have to do with my ulcerative colitis, but I had a gallbladder attack. I had a test previous to that that showed that I had sludge and then had a partial blockage in my gallbladder. I went to the emergency room when I had an attack. The emergency room doctor said, “I’m not a betting man.” By the way, I lived in Las Vegas. He said, “I’m not a betting man, but you’re having your gallbladder out.” And they did another test and the surgeon came in and goes, “There’s nothing wrong with you.” And I said, “Well, what’s causing all this pain? I’m in excruciating pain. They give me medicine. I’m in even worse pain. Something’s causing this pain.” And his response was, “Women sometimes have stomach problems and we don’t know what causes them.” To get diagnosed with ulcerative colitis it was hell. I said, “I’m bleeding every time I go to the bathroom.” My doctor said, “Oh, you must have hemorrhoids,” and gave me a cream. Told me he wouldn’t give me a referral until I used it. So I use it, told him, “I’m still bleeding. I’m not having any relief. I’m still running to the bathroom.” He referred me to a gastroenterologist. That gastroenterologist then said, “Oh, well, it’s not blood that you see.” And I said, “I know it’s blood. I know what blood looks like.” And she said, “Well, I’m not doing colonoscopy until we do a fecal blood test, a fecal occult blood test,” or something like that, “and that it shows positive for blood.” Why don’t doctors listen? Why wouldn’t they listen to me? Why did I have to go through so many hoops just for them to do a test to show that I have something? That’s what I want. I want a resource that will listen to me.

I think again, going back to community, I think that having support from other patients who have been through your similar journey is so important, and I feel like I’ve had a little bit of that, but maybe not as much as I needed throughout my entire journey. I mean, I just started becoming involved with a support group a year and a half ago, and I’ve been diagnosed for 10 years, so if I had a wider community support from the very beginning, it would have made my journey a little bit easier to not feel so isolated. And I really would love to have a super close contact that we could spend time together, and one of us would just know if one of us was experiencing something, and you kind of go on that just knowing that somebody gets it and has been there in your shoes, potentially.

I touched on this a little in the last question, but my resource that I haven’t been able to find is a good place to get recommendations for good GI clinics, or GI doctors, and especially good dieticians. Diet is such a huge part of IBD, whether you follow a diet to try to manage your disease, or whether you just can’t eat certain foods because of your disease. And I’ve seen the general dietician at my GI office, but she didn’t know about a lot of the diets that I knew about and the information she gave me directly conflicted a lot of the information that the IBD diets follow. So I just feel at a loss on where to go from there. And I eat such a limited diet and very little foods, and I would really love it if there was someplace I knew I could go to get help with that, how to eat, what to eat, what foods could help me feel better, how to add those into my diet. And then, like I said, just some sort of patient resource where patients could recommend or rate GI doctors or GI clinics would help with making choices in that medical care.

These could be out there, but I haven’t seen one. It’s probably pamphlets. I know a lot of places do pamphlets and they can be informative at times. So, probably pamphlets on the new medicines or new ways I can have more energy or watch what I eat when I have ulcerative colitis.

Initially I think it would have really helped to connect with more people online. I didn’t meet anybody who had the same condition as me until four years into my diagnosis and I think it would have really helped to search different hashtags on Instagram, such as j-ouch or ulcerative colitis. Now that social media has really risen in popularity I think it’s really helpful to connect with people that I have found online. So I think just having this resource in the beginning would have been helpful. But definitely online resources and just how they’ve been rising in popularity, I think that really helps the IBD community because a lot of the times it’s really hard to go out and meet people, especially during these COVID times, but a lot of the times you were feeling sick with the chronic illness, so connecting online is a very helpful resource.