Learning to Accept IBD - About IBD Podcast Episode 140

Learning to Accept IBD – About IBD Podcast Episode 140

Being diagnosed with a chronic condition is a major adjustment. Digestive conditions like IBD (Crohn’s disease and ulcerative colitis) wind up affecting every part of our lives. Learning to accept the ways in which the disease affects life can be helpful. But it’s important to make the distinction between acceptance and complacency. Maalvika Bhuvansunder, a young adult patient living with Crohn’s disease, uses her experiences to help bring the concept of acceptance into focus for other people who are living with a chronic condition.

Concepts discussed on this episode:

Find Maalvika Bhuvansunder at:

Find Amber J Tresca at:

Find Mac Cooney (mix, sound design, and theme music) at:

These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

Transcript

[Music: IBD Dance Party]

Amber Tresca 0:04
I’m Amber Tresca and this is About IBD. I’m a medical writer and patient educator who lives with a J pouch due to ulcerative colitis. It’s my mission to educate people living with Crohn’s disease or ulcerative colitis, about their disease, and to bring awareness to the patient journey.

Welcome to Episode 140.

Being diagnosed with a chronic condition is a lot to take in. The condition winds up affecting every part of our lives, including school, career, finances, and all of our relationships. What can help is learning to accept how living with these conditions affect our lives.

Acceptance doesn’t mean giving up though, but it does mean that we may need to achieve our goals in a different way. My guest is Maalvika Bhuvansunder. Like many of us, Maalvika’s life was upended when she was diagnosed with Crohn’s disease. She wound up putting many of her goals aside for a time until she got the disease under control.

What was surprising to her was that she worked so hard to achieve remission, but it didn’t turn out to be what she expected. She describes her diagnosis journey, including why she had to change doctors, and how her time as a fellow with the nonprofit patient organization, the Crohn’s and Colitis, Young Adults Network helps her to find her footing and get back to her life.

Hello, Maalvika, thank you so much for coming on About IBD

Maalvika Bhuvansunder 1:28
Thank you so much for having me here. It’s a great opportunity. And I’m super excited for this.

Amber Tresca 1:34
Me too. Okay, so let’s first begin with some introductions. So I wonder if you would tell me a little bit about yourself.

Maalvika Bhuvansunder 1:43
Okay, sure. So as you all know, my name is Maalvika, my pronouns are she/her. So currently, I’m in training to become a psychologist. So that’s great. And to speak more about my IBD journey. Well, I’ve been having Crohn’s since 2016. So that was right about the time I got into university. I’ve been having it since then. And it’s been a journey of ups and downs, flares, remission, all that together. And yeah, here we are, right now.

Amber Tresca 2:15
Yeah. Oh, thank you so much. Yeah, I’ve read some of your writing. So I’m excited to learn more about your, your journey, because you’ve clearly thought very deeply about some of the concepts surrounding IBD Yeah, so But let’s first start talking about your diagnosis, how that all started for you and what that was like to, to be diagnosed, and maybe a little bit about where you were diagnosed.

Maalvika Bhuvansunder 2:37
Okay. So, I was diagnosed in 2016, around November, December. But I started noticing the symptoms early around March, April. And that was when I was having my examinations going on. So everybody just dismissed it as stress. And you know, I was losing weight and having these symptoms because of stress.

But then when the weight loss was really unexplainable, we decided to go to a doctor. But I was initially diagnosed with anemia. So they were like, you have an iron deficiency, that’s why you’re losing weight, nothing else. And they gave me a bunch of iron tablets, which aggravated my symptom, which I know now not then because, as we know, iron tablets really hurt your stomach, if you have Crohn’s or weak stomach in general.

So this was around me when I was diagnosed with anemia. And then the weight loss was just not stopping. And I started to get pain, you know, frequent diarrhea and all that. So then we changed the doctor, we went to another GP.

And this time I was diagnosed with amoebiasis. So still not IBD something else completely. And it’s when the doctor decided, let’s just do an ultrasound to see if things are all right. He noticed a severe inflammation.

That is when he decided, you know, we should say you to a gastroenterologist, and this was around November when I went to the gastro had a colonoscopy and all done. Got the official diagnosis of IBD, but not Crohn’s. It was ulcerative colitis at that time, that’s what I was diagnosed with. Yeah. So this all happened in Dubai, because I have been living in Dubai my entire life. So yeah, this was my diagnosis journey.

Amber Tresca 4:17
And then you have had surgery. I know because from reading your writings, was that the only surgery? Can you tell me a little bit about what happened there?

Maalvika Bhuvansunder 4:27
Yeah, sure. So I had the surgery only in 2021. So I went five years without surgery. Because initially my symptoms, you know, once I started treatment for Crohn’s, it was a bit under control. I mean, I wasn’t gaining weight as much, but there was no pain all that had reduced, but suddenly in 2020, my health got really bad.

It was double the amount of pain the weight loss was against severe, you know, I couldn’t get up. I couldn’t get out of bed. It was that bad. So then when they did a CT scan, they notice an obstruction. It In the right side of my ileum so, at that point, I was only on tablets. I was not on biologics or anything, because that was a different doctor. You know, that’s a different story altogether. He did not believe in the concept of biologics.

So that was something which would have prevented my condition from becoming severe. But no, it prolonged to that. So I had a right hemicolectomy laparoscopic surgery in 2021. And since then, I’ve been in remission. So I guess the surgery was a great decision that we took.

Amber Tresca 5:37
So it was helpful and yes, what treatment did you go back on? Did you go back on oral treatment? Or did somebody finally say it’s time for a biologic?

Maalvika Bhuvansunder 5:47
Yeah. So when we change the doctor, so we changed this around, beginning I think, Jan of 2021. So he said that let’s start with the biologics and I was on infliximab, Remicade. And he was let’s start with it and see how it improves your symptoms, then maybe we might not have to go with surgery at all.

So good news is Remicade was working for me it was working great, but the obstruction was still quite severe. So he decided let’s get the surgery done. Because you know, you will get your symptoms will be relieved faster than just relying on Remicade. So after that, I have gone back to Remicade. That’s the only medication or no oral medication, it’s just Remicade.

Amber Tresca 6:29
Right and so alright, you did achieve remission after that surgery. But you have written about how remission didn’t quite turn out to exactly be maybe what you thought it should be? Or maybe I should say what other people thought it should be. Can you talk about why you found remission to be complicated?

Maalvika Bhuvansunder 6:53
Yeah. So it’s because you know, people would think or you would think when you’re in remission, you’ll just be happy, you know, everything’s going to be great. But that’s not the case, because now I’m in remission, but I’m always scared, what if the flare up happens again, you know, you always have that thought, and that does not let you be happy. And despite being in remission, there’s a lot that I’ve lost because I got diagnosed during my younger days.

So it was this whole new whole period of my life where I was supposed to be out there and join, I couldn’t because I was sick. So now into my adulthood, achieve remission. That’s great. Now I get focused on my career, but then again, I look back at the time that I’ve lost, and this nothing making up for it, you know, last time was last time, and this is something that’s not even in our control, you know, so all that makes the remission, very bittersweet, because yes, I am happy, I’ve achieved remission, not everybody gets that.

But each day, you know, like a slight stomach pain, which could be because anything, automatically, your mind goes to oh my god, it’s the flare up, you know, oh, my God, it’s happening again. And even in remission, I don’t have the energy as someone without a chronic illness would have. So certain things does take a lot of toll on my body. So, you know, I still have to be careful about what I do and what I don’t.

And then again, the journey would food. Even if you’re in remission, you cannot just eat whatever you want, you have to be very careful. So all that just makes me think, Am I really in remission? Because if each day, I’m going to be living as if you know, what, if it comes back then, you know, that’s why it feels very bittersweet for me the remission, but others don’t seem to understand that they will always think, okay, you are fine.

Now, you know, they say you’re cured, but they don’t really understand that Crohn’s is not curable. And you know, this is something I have to deal with throughout. So even all those comments from other people just makes it really difficult.

Amber Tresca 8:49
Yeah. So for anyone listening May the little air quotes for cured because as we all know, it doesn’t really work that way for us unfortunately.

[Music: About IBD Transition]

Amber Tresca
Is there anything that you do for yourself if you’re you’re anticipating things to get bad again for yourself and for symptoms to come back? Do you have any ways that you cope with that either in the moment say if you’re out with your friends or something or anything that you do sort of long term to cope with the idea that the disease may come back again?

Maalvika Bhuvansunder 9:42
So in the moment, I surround myself with people who are well aware of my journey with this who are understanding of that, and you know, who I know I can lean on with these peers and they’re not going to dismiss it as something that this girl is crazy. Why is she thinking all these things? So in the moment, I made sure to surround myself with such people.

And I am very open about my journey with Crohn’s diagnosis. And, you know, everybody near me knows about this. So there’s nothing that I hide. Because in case I do have a flare up, I know these people will be there to help me.

But in the long term, since I’m from the field of mental health, I do suggest like, therapy, I have been in therapy, you know, to help get rid of this fear. You know, I feel in the long term, that’s what really helps being in therapy, but also understanding that this is a huge part of your life, but the days you feel good, enjoy it, make the most out of it, you know, just dig and to be kinder to yourself and your body. It has been through a lot.

So if I’m not able to do certain things, which others would expect me to, I don’t get it myself as much anymore. I’m like, It’s okay. I’ve been through worse. Now. It’s okay, if I can’t do this. So just things like that, you know, helps me get through.

Amber Tresca 10:56
Yeah. And so in terms of taking those good days and making the most of them, you’ve lost time, as you’ve said, and that’s something that you can’t get back. But do you find yourself trying? Do you find yourself maybe trying to make up for that last time in maybe travel or doing other things? Maybe, with your friends or with your studies?

Maalvika Bhuvansunder 11:19
Yeah, actually, I did. So after all, this now that I’m working, I make the most out of it. I have made great friends at work, I go out with them frequently, you know, so I’m making up and I’m doing things that a 16 year old Malvika would have done because it’s okay.

You know, there’s no harm in it, I didn’t get to do it, then let’s do it now. And, yeah, I just do that. And I went abroad to study, which was great. You know, although this was in 2019, before the surgery, but I was still relatively doing better in 2019. So I enjoyed my life abroad. So it just did things like that.

Amber Tresca 11:56
Yeah. So it’s really incredible to talk to you and learn about the journey that you’ve made mentally, with your IBD. So I’d like to hear more, though, about acceptance, because that’s another topic that you’ve written on. And I don’t see too much on this in the community, at least not from patients. So tell me about acceptance, and how you’ve come around to accepting your life with Crohn’s disease and what that looks like for you.

Maalvika Bhuvansunder 12:29
So when I first got the diagnosis of Crohn’s, to be honest, we did not know what that meant. We had never heard of this before. And there’s no awareness about it. In UAE, like in Dubai, you don’t know much about Crohn’s. So at first, we were like, What are you? What is this like, for us? Anything serious? We associate that with cancer.

So automatically, my question was, Is this cancerous? Like, does this mean like, I’m going to die? Is that what this means? So it was it? No, it’s not like life threatening, but this is something you have to deal with your entire life. So that was something which took me a really long time to accept because having an illness for the rest of your life seems very daunting. And you know, when the doctor said, you have this list of medications, you have to keep taking throughout your life. It just went back again, how is the quality of my life going to be, you know, if I’m going to rely on medications for my body to be healthy? What exactly is that? And also things you know, when you know, you’re sick?

Okay, it’s very difficult to make friends. So automatically remind when to what if I don’t make friends at all, because who would want to have a sick friend they can’t go out with, you know, and can’t do fun things with. So it did take a lot of time to accept this. But then I realized, the more I was unaccepting of this, the harder it was making the journey for myself. I was making it more difficult for me.

So I just wanted just sat down and I was like, Okay, this sucks. I have this, but what can I do to make it better? I can sit and cry about it daily, which is fine, which is completely fine. When you have something like this, it’s okay to pity yourself because who nobody else is going to you. So, yeah, but then I was like, It’s okay, I’m still going to feel bad for myself.

But I have to accept the fact that I have this now. It’s rubbish to go away. I can follow the right treatment. I can do things from my side, which can ensure a better quality of life, and just accept that. So yeah, it was not an easy journey, but it’s something that needed to be done. Yeah.

Amber Tresca 14:33
Well, I will say that you did it in, as far as I’m concerned, record time, because it probably took me decades to get to that acceptance. So that’s pretty. That’s pretty amazing. All right. So let’s talk about the project that you just completed with your co author, Carina Diaz, and how that all came about because you based it on your experiences in studying abroad in the UK So you left Dubai and studied in the UK? I think I know why you decided to write about this and to make this material available to people in IBD community. But why don’t you tell me about how this all came about?

Maalvika Bhuvansunder 15:12
Yeah, sure. So this project was a part of our Crohn’s and Colitis Young Adult Network fellowship that Carina and I were paired up for this. So um, I remember like in 2019, not in not even 2019. In 2018, when I had started the process of the application, when everything you have to apply your before the course of the year, you want to start right.

So I did not know what I would do about my Crohn’s there. You know, I did not know who should I contact, what should I do regarding this, things like that. And I remember sending, I found out this Crohn’s and Colitis, Young Adult Network, their page online. And I remember emailing them asking, you know, do you have any resources? Or can you help me out with something like this, because I’m completely new to this, I don’t know what to do.

And they did send me a list of links in UK, that, you know, that would help me. So that was the only resource I had at that time. And it took me a really long time to find it. So when I did start my university journey, I realized how important something like this is. Even in countries like US, UK, when there’s a lot of awareness regarding IBD, if you don’t have the necessary materials, especially for students, it’s really daunting, it’s really difficult.

You live in a new country as it is, is very challenging. But having to go there with an illness, it makes it 10 times harder. So, you know, when we had to come up with an idea for the project, you know, we both were just like, bouncing off each other. And it was Carina, who suggested that, why don’t we do something based on your experience, you know, so that’s how we came up with this and decided to come up with a guide, because I’ve not seen one like this anywhere before, which is, you know, useful resources for students who are planning to study abroad, you know, the major countries that students would go to, and just make the life a bit easier.

So we came up with like, useful links and organizations in each country, few steps that you need to follow before you go to a different country. And, you know, while you are there, what you should do, and, you know, certain, like checklists that you should have ready before you start your new journeys, you know, if you’re prepared, it really takes the toll of moving to a new country with an inverse.

So that’s how this project came about, you know, just wanted to use my experience and help others who would be in the same boat as me.

Amber Tresca 17:39
Yeah, I think it’s amazing. I wonder, though, too, because this was a project that you did with the Crohn’s and Colitis Young Adults Network, and some people may not be as familiar with it as we are. Can you take a minute and just talk about that and talk about what the fellowship is?

Maalvika Bhuvansunder 17:57
Yeah, this network, it helps empowering young adults with IBD with, you know, useful articles contents, you know, it helps them find people similar to them, who can, you know, share their journey with them, you know, help them out in that they have support groups, and a lot of things like that.

So each year, they have a fellowship, where other young adults with IBD, you’d apply for that. And through your articles through your voice, you would help spread awareness and advocate for other young adults who are going through the same journey. So the fun fact is in 2022, is the time they started their international, you know, they started taking international applicants as well. So they did that in 2021. Yeah, but I applied in 2022. So that was a second year, they had started taking their international applicants.

So I wanted to represent a country like Dubai and India, where there’s not much awareness and help out, people living here, young adults living here with their journey. So they’re doing great things. And I’d really recommend anybody with IBD check out their page, you know, the social media handle, they’re doing great stuff, and they have a lot of awareness. They’re very helpful.

Amber Tresca 19:08
Yes, I completely agree. How would you say that being in the fellowship and working with the Crohn’s and Colitis, Young adults Network has changed your life?

Maalvika Bhuvansunder 19:19
it has really changed for the better, because before this, I had not interacted with anybody else with Crohn’s, or IBD. I did not know anybody.

So seeing this group of people thriving in their life, despite having this condition, and somebody that I can share my concerns with talk to gain insight. That was life changing. You know, it had no it helped me feel a part of a community.

And you know, like, it made me feel like I’m not alone in this. I have people similar in this similar journey, because prior to this, I felt very isolated. That I thought I am the only one that has this in the entire world, which is not true, hopelessly. But that’s how you feel you feel lonely in your journey. So getting To be a part of this community was very empowering to me.

Amber Tresca 20:04
That’s amazing. I’m so glad that that resource was available to you and available to other young adults who are living with, with an IBD. And so on. On that note, let’s, let’s hear about any advice you might have for some young people who live with IBD. I think you’ve already given plenty about, about maybe letting go of some things, accepting some things living for the moment. Do you have anything else that you would like to say to to people who are diagnosed young, like you were?

Maalvika Bhuvansunder 20:35
Yes. The main thing that I would like to say to them is if you feel something is wrong with your body, fight for it, no matter what anybody else tells you, your reports might be fine, but you, you might know that something is wrong, force them to do additional tests, you know, don’t let them convince you that nothing was wrong, it’s all in your head.

No, sometimes it’s okay to stand up for yourself and ask for additional things to be done. Because it’s better to know this early than it becoming, you know, just prolonging it and becoming much more severe than it should have been.

And you know, to always communicate your concerns with the doctor, be open with your healthcare team and asking them to be transparent with you as well. If there’s a certain treatment they feel might work for you, they should let you know that it’s up to you to decide if you want it or not. The doc, the healthcare team shouldn’t make the decision for you. So just stand up and fight for yourself.

And I’d also like to say as much as comfortable share about your journey to the people close to you like your social circle your friends, it really helps putting things in perspective. Because let’s be honest, they don’t know what this is. So we can’t really expect them to be understanding if they also don’t know what is going on. So it’s easy for others to you know, help you out if you can open up a little as much as you feel comfortable with to them.

And also be kind to yourself, you know, don’t get influenced by what others tell, you know, it’s okay to seem lazy, but you know what’s happening to you. So just be kind to yourself, as you should be a priority, not anybody else. So just do whatever makes you feel happy at that moment.

And the days are not in the flare, make the best out of it. Watch your favorite show, eat what suits you and what you love, you know, but take care of yourself, you should be a priority.

Amber Tresca 22:27
Oh my gosh, that’s such great advice. Thank you. I felt like you were saying it to me. Even though it was thinking in terms of people you know, in their, in their school career.

[Music: About IBD Transition]

Amber Tresca
Tell me about what your life looks like today. What are you working on? Now? What do you hope to do next.

Maalvika Bhuvansunder 23:05
So I have shifted from Dubai to India. So that was a huge change for me 20 years of living in a country and then moving back to my supposin home country. But Dubai feels more like a home to me.

So I’ve been just tackling that the entire change and you know, starting a new career in a new country, for me. But I can say that I’ve been in remission for two years now. And no pain. No, I can eat what I like, you know, I don’t have much restrictions right now.

So what I’d like to say to everyone is, this is also possible, it’s not like you’re going to have only pain, you know, that’s what I used to think that I’m never going to get better. This is the only thing that’s left in my life. So there is hope for everyone if I got your anybody can because mine was quite severe, and I got here. So don’t lose hope.

You know, life is great during remission, but it’s up to us to make life as great as we want is what I’d say. So now my focus, I can finally focus on career, my hobbies and things like that something that I could not focus on for the past six years. So it’s looking great. Right now, me.

Amber Tresca 24:17
So well, what are some of the hobbies that you do?

Maalvika Bhuvansunder 24:21
So I really love dancing, I was training to become a dancer, Indian classical form. But I had to stop that during I once I got the Crohn’s diagnosis because I could not. So I am going to be restarting my dance classes, and I love swimming, I do swimming, and then reading these are my hobbies.

Amber Tresca 24:39
Wow. So that’s a whole other level of acceptance of change for you how what was that process like?

Maalvika Bhuvansunder 24:47
So this is something that I used to go on, you know, give dance performances and things like that. It was something it was my passion. So I never thought there would come a day when I had to stop doing that. But now I’m glad I can start it back again. I wouldn’t look at the past though. I’m just glad I can start it back. So yeah, grateful for that.

Amber Tresca 25:06
Yeah, that sounds really great. Oh, wow, that’s gonna be wonderful. So what do you do when you go out with your friends? What’s a what’s a fun night out for you right now? Dancing?

Maalvika Bhuvansunder 25:18
Yeah, in Dubai. Yes, we do go out for that. But we love food. We are major foodies. So we explore new places. And they are very, you know, tolerant about my restrictions. So I googled the menu beforehand, and I see what I can eat and cannot eat. So we go out exploring food, we love movies. So we go out for movies, and arcade, things like that. I just, we go do all that. And of course shopping. I love shopping so. And it’s quite hot in Dubai. That’s all you can do be indoors and do things indoors, outdoors. The stuff only happens in December. So till then you do everything possible indoors.

Amber Tresca 25:55
Yeah. So Maalvika, it has been amazing to connect with you and to talk with you today. I really appreciate everything that you’re doing for the IBD community and then also for taking the time out to talk with me today. Can you let everybody know where they can find your work online where they can find you online?

Maalvika Bhuvansunder 26:18
Sure. So this guy, they can find it online on the Crohn’s and Colitis Young Adult Networks website. So in their fellow projects, they can find this on their website, and they can also find this on my LinkedIn, it’s under the name Maalvika Bhuvansunder. That’s my LinkedIn handle. So they can find it on that as well.

Amber Tresca 26:36
Perfect. And I will put all that information in the show notes on on my website, because you’re doing such incredible work. I was so just inspired by your writing. And then the fact that you came out with this guide that you co authored with Karina, there really isn’t a lot out there, as you well already know about this. And so it’s it’s very much needed. So thank you, for you guys for putting it putting it all together. And then for also speaking with me today, thank you so much Maalvika.

[Music: IBD Dance Party]

Maalvika Bhuvansunder 27:08
Thank you, thank you so much for having me here. And if I can help out anybody who is in the same journey and was where I was few years back, it would be great because I had this fellowship. You know, they this Crohn’s and Colitis, Young Adults Network , they were just helping hand for me. So if I can be there for somebody else. That is great. That’s all the right one.

Amber Tresca 27:33
Hey, super listener, thanks to Maalvika Bhuvansunder for taking the time to be interviewed, including working out the logistics of recording while in two vastly different time zones.

Her journey to acceptance was hard one, she has shared much of it in her writings, which I will include in the show notes. Even if you’ve been living with IBD for some time, or you have been treating people with IBD for many years, I can guarantee you’ll benefit from reading about her experiences.

Links to a written transcript, everyone’s social media handles and more information on the topics we discussed is in the show notes and on my episode 140 page on About ibd.com

Thanks for listening. And remember until next time, I want you to know more about IBD.

About IBD is a production of Mal and Tal Enterprises.

It is written, produced, and directed by me, Amber Tresca.

Mix and sound design is by Mac Cooney.

Theme music is from Cooney Studio

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