A question for the Ulcerative Colitis Community

Who are your biggest supporters specifically when it comes to your or your loved one’s condition? For example, your doctor, friends, family, or someone else? And what are some examples of how they have supported you through this journey?

Answers from the Community

My family is my biggest supporter. They will remind me when I want to eat something that I should not, that is going to cause me to not feel well. Sometimes I do it anyhow. Sometimes I don’t, but they are able to check my blood sugar. They know my symptoms of low blood sugar, high blood sugar, and can help me manage my disease on a daily basis.

My family has been the biggest supporter, I would say, in this whole journey. They’ve always been there for me, love me unconditionally, even though like I said, ulcerative colitis takes you out of the game, sidelines you, you’re constantly in the restroom, constantly in pain, depending on what day it is or what you’re going through. And they’ve never made me feel less than. They’ve always just supported me and it’s got to be frustrating for them as well in a lot of levels, but they’ve never made me feel bad or, I don’t know, they just, they’re just really supportive and I love them a lot and I couldn’t go through this without them.

My biggest supporters are my parents and my best friend. They have just been so great throughout the whole process whether it was coming with me to my class even when I was first diagnosed, or coming to infusions, or visiting in the hospital when I was hospitalized. They’re just going through every step with me. And, it’s just super helpful to have people support me. If I’m not feeling well, they’ll help out with things at home like, cooking or cleaning. And, they’re just really supportive all around and encouraging to me.

I have to say my biggest supporter would be my wife because she and I have been together since I was 20. Right after I was diagnosed and she has been there for every hospitalization, every surgery, camping out in my hospital room. She actually started medical school the month that I was in the hospital for 19 days because I had some complications after surgery. She would go to medical school during the week and then she would spend all weekend in the hospital with me. We would walk laps and she would be studying her study guides. I’d be trying to help her study while navigating my IV pole around. That image has stuck with me but I think the biggest thing is that she is just my biggest cheerleader and my biggest supporter. She is right there with me through all of the hard things. When I wake up covered in ostomy output because my bag sprung a leak overnight and I didn’t wake up in time, she is right there. We have a system where she throws the towel over me, starts the shower, I get right into the shower. By the time I’m out of the shower, she has completely changed the bed and laid out my entire bag change supplies for me so all I have to do is step out of the shower and just change everything, then we can go right back to bed. We’ve done this now many, many times, and she is just my biggest supporter. I think my other biggest cheerleaders are my coworkers. I’m a surgical nurse so my coworkers and actually one of the doctors I work with is a colorectal surgeon. She’s definitely my biggest cheerleader because she ended up having to emergently operate on me because I couldn’t make it to my normal colorectal surgeon because that’s a two hour drive away. So I had to make do locally. She caught that I had necrotic bowel and something seriously wrong with me before anyone else did because the scans didn’t show it. She just said, “I know you and I know how much pain tolerance you have and you should be snowed right now based on the amount of pain medication you’ve been given, and you’re having pain on the other side of your abdomen now. I’m booking an OR. This is not acceptable. Something is seriously wrong.” I was resistant at first but she was such an advocate for me in getting taken care of that when she got in there and opened me up, she found a foot of the necrotic bowel that had twisted off into a volvulus and gotten stuck in a loop of adhesion. She caught it before it perforated and before I got septic. It was really bad and she said probably another 8 to 12 hours and it would have perforated. I feel so lucky that I have such a great coworker and friend but also physician that was looking out for me. I think my family as a whole also are my big cheerleaders. Somebody has come out from my immediate family, whether it’s my sister or one of my parents, for every single surgery or hospitalization that I’ve had. If I’m having surgery in a few weeks and you know if I’m still in about five days in, when my wife decided to go back to work, my sister is going to fly out and come take care of me in the hospital and then afterwards to relieve my wife. They’re always cheerleading me on and showing up, either over the phone, or email, or physically being present for me, even though most of my family lives across the country.

I mean my boyfriend is probably my biggest supporter because when I do have an episode, he’s very understanding and makes sure, if I’m really not feeling well, to step in with our daughter and help out, and understand that sometimes I just really don’t feel good and I just need to go lay down or I need to be in the bathroom a little longer than normal, if I’m just not feeling good. He doesn’t complain about it at all.

My biggest supporter is my husband. Right now, when he knows about my condition and he’s actually… When we were in Turkey, when I went on my honeymoon to Turkey, I had an accident right outside my hotel room. The card key wasn’t working for some reasons, providence, I guess, and my husband actually cleaned up my mess and cleaned me up. And he has just been my biggest supporter. Any time we’re outside … A simple walk. I’m constantly like, “Okay, I have to go back. We have to go back.” And he’s always been very supportive and I feel bad towards him because he has had to experience this awful thing with me, but I’m determined to get better and be in remission so that I can experience life with him and with my son. But yeah, definitely the biggest examples I think is just like him giving me mental support and being open and okay with turning back when I can’t take it anymore, not being like, “Just suck it up and deal with it.” He’s been my number one support system. Before him, honestly, I just kind of dealt with it on my own. I didn’t really disclose this condition to my friends. My mom and my parents knew about it, but it wasn’t like they were actively a part of it. But you know, my spouse is a big part of my life obviously and he’s been my absolute number one supporter. My sister also has been a supporter. Her son, unfortunately also has UC. He got diagnosed when he was like six or seven and he’s really young. So she always, always giving me tips on how to manage it as well. So those two individuals definitely.

My family’s been continuously supportive. My mom, for example, has joined a variety of Facebook groups, which are all a couple of different, about different aspects of living or parenting someone with ulcerative colitis. And then outside of that, I’d say my friends have been a really big help. They visit me at the hospital a lot. There was a little bit when I was pretty much wheelchair bound for long treks. We would go and mess around with the town, when I previously thought it’d be something that I couldn’t do.

So I would probably say my doctors been one of the most supportive people throughout the entire journey. They have been very honest and very frank with me over the course of my diagnosis, and until now. So I think they really have been very helpful in not kind of conflating anything that they wanted to say. They’ve been very direct and I’ve really appreciated that over the time. I would say my family, however, I think at first they were supportive and now they just worry and that’s not super great, but my doctor has been there time and time again. And it really is absolutely incredible. I think he has been wonderful in the amount of honesty and his in depth perception about what it is going on and what would be the best course of treatment. And I think by him saying what the best course of treatment is, albeit unpleasant, I think that was probably the most support that I needed because by doing and saying that, he wasn’t trying to make me happy, he was trying to make me healthy. And long run, it would have made me happy, but I think his methodology and his perception and the recommendations that he gave supported me in such a way that I was able to stay in remission and have been for years now.

My biggest supporter, I would say, is my mom because my Aunt [PII redacted] also has colitis and she’s seen her go through that and she’s seen me go through that. I would say my boyfriend as well, even though he didn’t understand it at first, but he’s trying to help me as much as he can now that he sees how it really affected me. I did have to change doctors, but right now my doctor’s nurse has been with me every step of the way and has helped me with a lot of questions I normally have now, so I do feel supported by her as well.

I would say that my mom is probably my biggest supporter. I mean, obviously also my doctor, that’s kind of a big one. Mostly for my mom, because I was diagnosed at 15, and I was in the hospital at the time. She stayed with me throughout, I think, every single admission I had. Which was nice not to have to be alone. She also helped me get all my stuff together with my medications and dealing with specialty pharmacies. And I mean, just all around. Definitely the most support I’ve gotten. So yeah, just mostly helping me with my medications, and taking me to doctor’s appointments, and helping me reach out to the doctor when I’m not feeling well.

My husband is my biggest support. When I was first diagnosed, he stayed every single night in the hospital with me for two weeks. He barely left my side. He’s also helped by doing a lot of research when we’re trying to choose different forms of treatment. And he’s very supportive and listening to my needs and trying to do the best he can to support what I need. And I would say my gastroenterologist and my primary doctor are amazing supports too. They’ve been really supportive when I’ve wanted to try natural remedies or things that were less mainstream and they’ve been very open and spacious about helping me come to a place of each treatment and how we choose that.

My boyfriend has been my biggest supporter. At first, he was hesitant. He didn’t believe anything I was saying, and he was like, “It can’t be as serious as you say it is,” until I was hospitalized about two years ago with C. diff. And he went, “Wow.” He realized that, “Hey, this is serious. You’re getting other diseases that could kill you because of it.” And now he tries to do everything. So when I say, “I don’t feel good. I really can’t do this,” he supports me in it. When I say, “I think this might make me feel better,” he supports my decision because he knows that I’m in pain and that I’m willing to try just about anything to not be. And he stands by me, and he knows that I have cranky days and to leave me alone. And he still loves me, even though it’s been so difficult.

The biggest supporter for my ulcerative colitis, really, number one is my mom. She’s been there since the very beginning and I think the fact that she shows how much she cares and is searching for how this could happen. We don’t have a family history of this particular disease and just showing that care and compassion is somebody that I know I can cry with and not feel guilty about that. She shows it as if she were the one going through this trial. My gastroenterologist is also another big supporter. He helps recommend specialists for other areas of my life. I completely trust my ulcerative colitis is going to be taken care of in his hands. He’s also very straightforward, very black and white, which is very good for me because if there’s any gray area, I will pull away from that area. My husband’s also very supportive when he can. He doesn’t understand the disease completely and it makes him feel uncomfortable when I get sick, just because he knows how embarrassing that can be for me, especially if we’re out in public and I’m spending 20 minutes in the bathroom. He has a lot of compassion and he does what he can to distract me. If I’m in the middle of a flare, the last thing I need to do is be focusing and stressing out about that flare and whether or not I’m going to get to the bathroom on time and how long it’s going to take, and he does his best to distract me. I would say that those are my three biggest supporters.

My biggest supporters would be my husband and my kids. My family and some close friends are also a big support to me. And I feel like I have a good support in my physician’s assistant at my GI clinic, but my husband and kids support me the most by being understanding. When I have days that I can’t get much done, my husband will help with the kids and help around the house as much as possible. He’s there to listen and lend an ear when I just want to cry or vent with frustration. My kids are very understanding. They’ll try to help me by making up beds and the couch or bringing me drinks or just helping… My older kids will help with their younger siblings. And my PA is very understanding of my condition and she tries to help as much as she can. She tries to come up with solutions of things that would make me feel better and she’s also sympathetic and open to hearing my thoughts on things. My GI, I don’t feel like it’s quite as sympathetic. I feel like he’s a lot more clinical, but I really appreciate my PA, my physician’s assistant. And then I also have friends who will help chip in with giving my kids rides to activities if I’m not feeling well or helping with things like that.

The biggest supporters would probably behave to be my children. They’re really helpful when it comes to knowing when I’m not feeling very well, trying to stay pretty proactive about doing their own thing. If I have a day where I can’t really get out of bed, which hasn’t been recent, but if I did have a day that I couldn’t get out of bed, my oldest daughter would try to make dinner for the boys or try to help out. So probably my kids would be the biggest support system for me.

Definitely my family, my mom, my friends, my church community, and my medical team including doctors and nurses. The way my mom has helped me through my journey is she’s done everything from creating doctor’s appointments, traveling with me to doctor’s appointments, calling pharmacy to get medications, calling insurance, staying with me every night and day in the hospital. Several admissions, five admissions I would say that lasted anywhere from one to two months. Advocating for me in the hospital, talking to the residents, talking to the doctors, talking to the nurses, making sure I get my treatments on time, making sure I get my pain medication on time. She’s very supported me and also emotionally been there for me to listen and to talk and to hug and be a shoulder to cry on.