A question for the Ulcerative Colitis Community

Imagine if you could travel back in time and meet the person you were when you or your loved one were first diagnosed. What advice would you give them? How would you describe to that person how you feel now?

Answers from the Community

I would advise them to eat healthier, lose weight, exercise more, and maintain a body health that is healthier and less sugars and more meats and vegetables.

If I could go back in time and talk to myself when I was first diagnosed, I guess I would tell myself it’s going to be okay, but it’s a very hard thing to live with and to live through. Honestly, if I could go back in time, I would go back even further and tell myself to eat better and just take care of myself differently in hopes that this course of events would change the reality of having an IBD, such as ulcerative colitis.

I think I would just encourage myself to keep pushing through and to not push myself. I really tried to do more than my body was able to, back when I was first diagnosed, because I didn’t realize the severity of my diagnosis. And so just really, I would encourage myself to take it easy and to take things one day at a time. I would tell them that it does get better and that with medication and a lot of rest and the right courses of medication, that I could be in remission and lead almost a completely normal life.

I think the biggest thing I would tell my 19 year old self would be that this is a chronic illness, doctors keep using the word like, “oh, you know, if you do this it’ll be cured.” But you know, as someone who started out with mild disease and then went very severe over the course of only about two years after being diagnosed, failing every medication and then having to have surgery and make that decision. What am I going on? Three surgeries, four surgeries. Now it’s not a cure, it’s a treatment. But the reality is that this is a chronic illness that I will have for the rest of my life and I don’t think I realized that at 19. I thought that, oh I’ll just take meds and I’ll be fine. But the cure is a lie. The cure is a myth. There is no cure. I think if I could go back, the one piece of advice I would have for my 19 year old self is that stop chasing the cure and just learn to accept that this is a chronic illness and it’s going to be okay and if it’s not okay yet, then it’s not the end.

I would tell my younger self to stay on the medication I had been originally prescribed because I took myself off of it back like 26 years ago when I was first diagnosed, and also to try to avoid triggers better so that you don’t have as many episodes, but also to not be so embarrassed about it because I think that that was part of the reason why I was not actively treating my condition when I was in my 30’s is because I just didn’t want to talk about it. And it’s embarrassing to have to talk about you know the frequency of needing to go to the bathroom and having accidents once in a while and things like that.

This is a really good question, kind of sad actually. Oh boy. When I was diagnosed, when I was 15, I knew of the existence of ulcerative colitis because as I mentioned my mother had it. She still has it, but I really lived a very carefree life, I would say. Simple things like having breakfast in the morning and stepping outside my door wasn’t a cause of concern. Ever since I have been diagnosed with ulcerative colitis, I no longer have that ease. Especially if I’m traveling, traveling is kind of like the worst when it comes to this condition because access to restrooms is not that accessible, obviously. So if I could go back to myself, when I was younger, before I have this condition, I would [inaudible 00:00:56] to live it up, drink coffee in the morning, eat every spicy and fried food possible and live life without anxiety because my life has been drastically changed. Unfortunately my loved one’s lives have been affected as well because of my anxiety, that’s connected to my condition where I traveled to Turkey for my honeymoon and I had a really bad flare up there that left me so panicked and in a state of anxiety that I didn’t even want to step outside of my hotel room. Of course that affected my husband’s ability to enjoy himself as well. So I would just tell myself to enjoy life to the fullest, drink every coffee beverage in the morning because it’s about to change really quickly, unfortunately.

I would let them know that it’s always fluctuating health-wise. So while when I was first diagnosed I was in a really bad place, I’m currently doing really well. I went to college. My fatigue has been pretty minimal recently. So yeah.

Oh, boy. What I would probably recommend is kind of telling myself in a very, not a callous way, but in a direct way that it’s not the end of the world. For a long time I was very angry. And I think what I really needed to hear was like, it’s not going to kill you, it’s just an aspect of life that is very unpleasant and it’s very unfair, but it’s going to have to just be. And you can be mad, you can be unhappy that it’s happening, but that’s not going to change anything. So, I think that’s probably what I really wanted somebody to tell me, to be real direct, but also leaving the space to having me vent and expressing some of the anger that I felt. Because I … I mean, even to this day, I’m still not super thrilled by the whole experience, but, yeah. What was the other part? What advice would you give them? How would you describe to that person how you feel now? So, how I feel now is I think going through the grief process of mourning who I was and maybe the experiences that kind of pushed me through, now it’s kind of just it is what it is. I think I’ve come more to the acceptance stage where it is. It’s something, it’s going to be unpleasant, and it sucks, but at the end of the day it’s not the end of the world, and this is going to be very helpful in the long run. So, I guess what I would probably say is now I feel more confident in my ability to not go, or to stay in remission. And I think that was a long time coming and I would probably say that it’s not going to happen immediately. It’s not going to just fix itself, but it’s going to take a while for me to learn what it is I had to do to be able to get to this spot in my life now. Ideally, I would be able to kind of skip over the bad parts, but, neh. And currently, I think, I would probably also tell myself not to medicate with alcohol, because that’s what I did frequently. And I think, yeah. I don’t think I would have listened, but I think it may have been helpful in getting that foresight a little bit.

This one’s tough because when I was first diagnosed, I didn’t understand how severe it was going to be and how much it actually does impact my life. So the advice I would give to myself seven years ago is to take this seriously and to try to control your stress more because I think that’s one of the biggest triggers and also be more serious about your diet. And it’s more of a lifestyle change because right now I just feel defeated when I’m in a flare, it’s been very hard on my career and on my social life. It’s very lonesome sometimes, but there are people you can reach out to and you’ll find the people that honestly do care about you and understand you. And other people don’t understand it, but it is something hard to understand. So there’s just a lot to go with it and really don’t take this lightly.

I would probably tell the person who I was when I was first diagnosed not to settle for basically living a life where you have a bunch of symptoms and you’re miserable all the time, but to, I guess, advocate for yourself more and try to get across to your doctor if you’re not feeling well, or if you are having symptoms don’t settle. Just because you think that that’s normal or because you think that that should be expected with your condition, but to try to control your condition as best as you can and advocate for yourself. I would probably tell that person that now I still do have issues with advocating for myself, but that I would say that when I make an effort to do that I tend to feel better in that just in general, having that condition is very frustrating, but there are things that you can do to make it less frustrating. Definitely being more of an advocate for yourself is one of them.

You know, it’s hard to think about what I would say because it came on so suddenly and so severely for me. It came on right after I gave birth to my child. They almost took my colon out then, it was so severe, and I wasn’t sure if I was going to live. It’s such an unexpected thing. I don’t know of any amount of going back in time to say anything to myself would have done any good. I feel like I handled it the best that I could. Yeah, sorry, it’s kind of hard to answer that question.

I’d remind myself that it’s going to be a long journey and you have to be strong. And when there’s push backs, you need to stand up for yourself and fight for what you feel, because if a doctor tells you, “Oh, that pain can’t be that bad.” But you know that it’s really bad and you know something is seriously wrong, you need to speak up because sometimes the doctors aren’t right. And that now that you’re listening to yourself and following your body, instead of following the doctors, things are going to get better. You’re going to be able to get up and do things again. And there’s still going to be times where you’re going to fall backwards and not feel great and you just have to take it every day, one day at a time and you’ll start to feel better.

If I could go back in time to when I was first diagnosed, I would tell myself to believe that this is real. I think I was in denial for such a long time. I would also tell myself to try and manage my stress and put myself in a situation where I wasn’t adding additional stress outside of trying to battle this disease, so making changes in my personal life to make sure I was surrounded by people who were not adding stress, but more supporting me in my journey. How I feel now is definitely better, but I think if I were to tell myself back in time, I’ll never be normal again to the stage that I was before I was diagnosed with ulcerative colitis. I do have a new normal and that new normal is much better than the first three years after my diagnosis when I was trying and failing so many treatment options. It got worse before it got better, but the better is definitely manageable, and where I am today, I feel very thankful that they have these kind of treatment options because it was able to allow me to have children of my own and to have a somewhat normal, active lifestyle.

If I could go back in time and let myself know, pre-diagnosis what this was like I would tell myself to not give up hope, to keep fighting for the best care, to not accept good enough or the status quo and to keep fighting to feel better. Because there are enough treatments and dietary changes or supplements. There’s things out there to help you feel better, but that it’s a long road and it’s frustrating and healing isn’t linear. It’s not like when you get a cold and you progressively just feel better. Sometimes you feel better for a while, then you feel worse, then you feel better. So to just keep fighting and not give up hope and let them know that there is a light at the end of the tunnel. And even after that, things might get bad again, but they can always get better.

My advice would be, don’t be scared. Research all your options. Don’t settle for the first medication that they shove in your face. If you know that there could be something better out there, go for it.

The advice I would give myself being diagnosed at 13 is to not be afraid of surgery and maybe try to find people that have gone through these surgeries and have had their colon removed and have had that internal reservoir created, get their advice and their life story of living with the j-pouch. I think that would be definitely the biggest one because I have gone through a lot of medications that ended up failing on me. And how I would describe to that child of 13 years of age how I feel now is that I’ve gone through a very long and tough journey, but without my colon, you can live a fulfilling life and ultimately feel good.