Navigating Daily Life with IBD

Managing the physical symptoms of Crohn’s disease and ulcerative colitis is just one part of living with inflammatory bowel disease (IBD).


There are several challenges of living with these chronic illnesses that can affect your daily life:

  • Perceived stigma of IBD

  • Going to work and school

  • Managing relationships

  • Navigating social situations

  • Body image

Taking care of your mental and emotional health is just as important as treating your physical symptoms. If you feel you may be struggling with depression or anxiety, seek treatment from a mental health professional. You don’t have to suffer in silence.

Erasing the Stigma

It is stressful and isolating to feel like you are being treated differently because of your Crohn’s disease or ulcerative colitis, or to be worried that others may see you differently.

We understand how negative perceptions about the physical, and often invisible, symptoms of IBD can make it hard for you to feel understood and supported. Instead, we want you to feel empowered.

Learning to talk about your disease can help combat stigma and educate your friends and family about how you manage your illness while still living your best life.

Battling IBD negativity

Video Length 1:43

Battling IBD negativity Patients and caregivers often struggle with the stigma of being affected by Crohn’s disease and ulcerative colitis. Hear how other patients manage this stigma and how telling their story has helped them raise awareness.

Transcript

00:00

I think people aren't fully aware of

00:02

what IVD is and what it entails the

00:04

people that you know a little about it

00:07

kind of associated with being a bathroom

00:09

disease there is this taboo about the

00:13

Powell and those symptoms IBD is chronic

00:16

and relapsing and remitting and so that

00:19

makes it prone to stigma one thing that

00:21

I hear a lot is oh well my friend has

00:24

Crohn's and she just can't eat popcorn

00:26

you can't classify Crohn's disease

00:29

patients by what they can or can't eat

00:31

it's also an invisible illness so how I

00:34

might look on the outside is not how I'm

00:36

feeling on the inside at all I look very

00:38

healthy so oftentimes people

00:41

underestimate severity of my symptoms

00:43

it's a battle you kind of have to fight

00:46

every day and sometimes it's not even

00:48

just with friends and family it's with

00:50

your own healthcare team - patients will

00:52

continue to have symptoms regardless of

00:55

if their scope is clear and then they

00:58

worry that they're coming in wasting

01:00

their doctors time I try to talk about

01:02

having grown swatches because the more I

01:04

talk about it the less stigma there is I

01:08

tried it instead of getting frustrated

01:10

really thinking about maybe I could

01:12

impact the IBD community in this way

01:14

they might take an opportunity to teach

01:16

somebody a little bit about what they

01:18

heard the best reaction really is just

01:20

to ask what my symptoms are because

01:22

every person is different if you are

01:26

experiencing symptoms relay those to

01:30

your doctor and trust you are the expert

01:32

on your own experience in your own body

01:37

[Music]

English (auto-generated)

 

Explaining IBD to Others

Video Length 00:01:39

Explaining IBD to Others How you talk about IBD to others is important! It’s an opportunity to educate someone and raise awareness about your disease. Hear how patients have shared their experience and their thoughts on how people react to learning about their journey.

Going to Work and School

Whether you are employed or going to school (or both), it can be stressful to worry about how to manage your IBD symptoms outside of the comfort of your home.

It is possible to be successful at work or school and enjoy your time there, even as you learn to navigate your Crohn’s disease or ulcerative colitis in a public setting.

There are, however, times when you will need to make changes to your career plan or education if there are too many negative impacts on your physical and mental health. Some of those challenges include:

  • A schedule or task that is too physically demanding

  • Lack of schedule flexibility

  • Lack of support from your boss or supervisor

  • Too much stress

 

Kalee's story- Getting Through School with IBD

Video Length 11:35

Kalee's story- Getting Through School with IBD Kalee shares her experiences when managing stress, school, and Crohn's disease.

Transcript

00:04

hi my name is Kaylee I was diagnosed

00:07

with Crohn's disease when I was 17 years

00:09

old and I remember what a tough initial

00:12

adjustment that was for me I was nearing

00:14

the age of when I had to transition from

00:17

pediatric to adult medical care and on

00:20

top of that I was having to transition

00:22

from high school to college along with

00:25

all the nuances the thing on my own for

00:27

the first time and then just being

00:29

diagnosed with the complex and chronic

00:31

medical disorder throughout the years

00:34

I've had multiple procedures I've had to

00:36

take time off from work and school to

00:38

focus on my health but I managed to

00:41

graduate and I got a second degree and

00:43

it honestly made those milestones all

00:45

the more impactful my IVD has really

00:49

allowed me to develop a voice I never

00:51

thought I'd be able to and really

00:52

advocate for myself it's allowed me to

00:55

discover what amazing supports I have in

00:57

my life and how important it is to

00:59

openly communicate and make sure you

01:01

have accommodations to succeed I

01:03

remember a flare I had my junior year of

01:06

college I was very malnourished I had

01:09

lost about 20 pounds and I was

01:11

hospitalized I ended up having to be on

01:14

advanced nutrition support and I was

01:17

discharged having to to feed for an

01:18

extended period of time

01:20

and as you can imagine I was pretty

01:22

devastated having to do that while being

01:25

on my own and in college I was paired

01:28

with this amazing registered dietician

01:30

though that really advocated for me who

01:33

took the time to educate and include me

01:35

in every decision making process after

01:38

about three weeks of to feeding I

01:40

started feeling something I wasn't even

01:43

able to articulate at the time and in

01:45

hindsight it was the first time in such

01:47

a long time I was experiencing what it's

01:50

like to have stamina I really didn't

01:52

have the energy up until that point to

01:54

really make it through busy days at

01:56

school and that was when I realized that

01:59

nutritional support could have such a

02:01

profound impact on the life of IBD

02:03

patients and I wanted to be the

02:05

registered dietician my ID had been for

02:07

me those past several weeks so here I am

02:10

now I'm completing my year supervised

02:12

practice at Cleveland Clinic and it's

02:14

been so amazing to see things come full

02:16

circle and

02:18

begin having an impact on the IBD

02:19

community I found that mental health is

02:22

a seriously overlooked aspect of care I

02:25

think there's this ongoing struggle of

02:28

inflammatory bowel disease being an

02:31

invisible illness I think the age of

02:33

onset is really hard those teenage and

02:35

young adult years and being surrounded

02:37

by your healthy peers being able to go

02:40

out and have socialize and balance that

02:42

with work in school it's really hard to

02:45

when your outer appearance might not

02:47

match it all what you're feeling on the

02:49

inside and having to explain this and

02:52

justify this time and time they got into

02:54

different relationship types your

02:56

friends your family and sometimes even

02:58

your own health care providers it's a

03:00

really exhausting battle to have to

03:02

fight every day and it's hard to

03:04

articulate it to your healthy friends

03:06

and family members who might not

03:08

understand I think to everybody copes

03:12

with their symptoms and their disease

03:14

differently I know I've even coped with

03:16

different stages of my disease

03:18

differently and I found that it's it's

03:22

okay to be feeling the way that I'm

03:23

feeling in that moment and the most

03:27

important thing I've learned along the

03:28

way is that I'm not alone and I hope

03:31

that through this video you can better

03:34

realize that you're not alone in this

03:35

journey too

03:39

this month actually marks the six-year

03:42

anniversary of when I was diagnosed with

03:44

Crohn's disease and throughout the years

03:46

in school I faced my fair share of

03:48

challenges I think the first example

03:51

that comes to mind was actually my first

03:54

lecture hall style exam my symptoms

03:57

unfortunately we're not under good

03:59

control at that point at all and shortly

04:01

and to taking my exam I had to use the

04:04

restroom pretty urgently I tried to

04:07

explain to the teaching assistant who

04:08

was proctoring with Sam that I needed to

04:10

use the restroom but I'd be right back

04:12

to finish and unfortunately that wasn't

04:15

the testing hall policy and she told me

04:18

that if I used the restroom I wouldn't

04:20

be allowed back into the lecture hall I

04:23

was very embarrassed I was trying to

04:25

explain those symptoms I was

04:26

experiencing and my Crohn's disease my

04:28

peers were growing increasingly

04:30

frustrated that me they were trying to

04:32

focus on taking their exam and I ended

04:35

up rushing through the rest of the test

04:36

questions I did very poorly on my exam

04:40

and I had to excuse myself to use the

04:42

restroom I think in that moment it

04:45

triggered a lot of anxiety and it's an

04:48

ongoing battle with my Crohn's disease

04:51

as well but in that moment I felt very

04:54

overwhelmed by my Crohn's disease I

04:57

think it was mostly because I'm very

04:59

type A so losing that sense of control

05:02

over different aspects of my life was a

05:05

very hard realization to come to I think

05:08

it also made me realize all the question

05:10

marks I now have placed on different

05:12

aspects of my life what was the

05:14

long-term impact that this disease was

05:16

going to have how am I going to manage

05:18

this the school how am I going to

05:20

disclose this in the future to

05:22

professors friends potential partners it

05:26

was very overwhelming and I didn't have

05:29

answers to any of those questions the

05:33

second example that comes to mind was

05:36

the summer I had to take off from school

05:38

to focus on my health I was supposed to

05:41

finally be enrolled full-time and kind

05:43

of catch up to speed not that there is

05:46

that schedule for undergraduate

05:47

coursework but I had this plan in mind

05:51

about how I was going to stay on

05:52

I was gonna graduate on time where I

05:55

thought I'd be in life and unfortunately

05:57

my biologic had stopped working and long

06:01

story short I had to go back home and

06:04

focused on myself and take time away

06:06

from school and I became very depressed

06:08

it's really hard to kind of have the rug

06:12

ripped out from under you and meanwhile

06:15

see some of your healthier peers be able

06:18

to focus on coursework see what pictures

06:20

they're posting on social media see the

06:22

travels they're going on over the summer

06:25

and I'm struggling just to to stay

06:29

healthy at home and I'm not even

06:31

enrolled in coursework it was really

06:33

hard just becoming fixated on that

06:36

specific moment in time and how I was

06:39

feeling and how my quality of life was

06:41

at that moment comparing my journey with

06:45

other people but you know it's like

06:47

comparing apples to oranges where I am

06:50

versus where someone else is I think I

06:54

just kind of felt isolated in that

06:56

moment as well I felt like nobody could

06:58

really understand what I was going

07:00

through and I think it's kind of toxic

07:03

to think that way but at that moment in

07:06

time I didn't really know where else to

07:08

turn

07:11

I think where I currently am in terms of

07:16

my mentality is now that I'm pursuing a

07:20

higher education and working really long

07:22

clinic days I at times get really

07:24

frustrated with my limitations it's

07:27

tough when you're working long hours or

07:29

having to balance multiple

07:31

responsibilities and your energy level

07:34

or maybe some of your other symptoms

07:36

aren't as well controlled as you wish

07:38

they could be and it's the last thing

07:40

you want on your mind it's tough having

07:43

to press the reset button or have to

07:45

take time away from your busy work day

07:48

or school day or whatever

07:49

responsibilities you're balancing I've

07:52

really struggled with having to be okay

07:55

with just hitting pause and taking a

07:57

little break for myself and not getting

07:59

frustrated at that but it's pretty

08:02

normal to have to just take a second

08:06

reset and it's way easier said than done

08:10

I found that openly communicating with

08:13

my friends family and all sorts of

08:15

different relationship types have really

08:18

helped me better convey how my disease

08:19

impacts me I think there's that fear of

08:22

scaring somebody away or sharing too

08:25

much but I found in time that the

08:28

healthy relationships the supports that

08:30

you really need and want in life are

08:32

those that survive those tough

08:34

conversations I think openly

08:36

communicating to with your health care

08:38

team it's it's really beneficial I think

08:41

to have those conversations of how

08:43

you're feeling how your symptoms are

08:45

impacting you mentally without that open

08:48

communication I found that it's really

08:50

tough to address those concerns and it

08:53

really forces me to kind of bottle up

08:56

those emotions on an unhealthy way if I

08:58

don't communicate those feelings

09:00

I think what's helped me internally

09:04

address those feelings as well is kind

09:07

of shifting my mindset in my focus to

09:10

instead what I'm not in control over and

09:13

some of the negative aspects of my

09:14

disease to instead focusing on what I

09:17

can be in control of so even though I

09:20

feel really tired because of my disease

09:22

I can focus on

09:25

making sure I prioritize what's

09:27

important and saying no to things and

09:29

being selfish which is a really hard

09:32

skill to learn

09:33

but taking time away from myself making

09:36

sure I'm getting enough sleep making

09:38

sure I'm eating well it's also helped me

09:40

to make sure I have the proper

09:42

accommodations in place and this is also

09:44

stemmed from having those open and

09:47

conversations with my healthcare

09:49

professional she then set me up with a

09:52

Disability Resource Center at my school

09:54

and she set me up with testing

09:57

accommodations making sure my professors

09:59

were aware of extended absences I'd be

10:02

experiencing if I had any procedures or

10:06

hospitalizations and they just really

10:08

worked with me and making sure that that

10:11

would not be a stress I would have to

10:13

balance on top of not feeling well it

10:15

made such a difference and allowed me to

10:17

succeed in school I think also being

10:20

honest with my boss wherever I was

10:23

employed even though it was a tough

10:25

conversation to have and making the

10:29

decision to be open about how my disease

10:31

impacted me having that open

10:33

communication really helped to make sure

10:35

that I was well accommodated to in a

10:37

workplace

10:40

throughout the years finding the right

10:42

supports have made all the difference in

10:44

how I mentally cope with my disease

10:46

being able to have conversations with

10:48

patients and caregivers that really

10:51

understand what it's like to live the

10:53

day to day I'm inflammatory bowel

10:54

disease has made such the difference in

10:57

my journey I joined a Crohn's and

10:59

Colitis local support group and I also

11:02

participate and power to mentor him and

11:05

tea program which you can find more

11:06

information about on the Crohn's and

11:08

Colitis foundation website it's made

11:10

such a difference to be able to learn

11:12

how to have those conversations and how

11:14

they cope with their illness I think the

11:17

last point I want to stress is that if

11:19

you're feeling this like it's ok but

11:21

it's really important to have those

11:22

conversations with your GI doctor or the

11:26

rest of your health care team and really

11:27

make sure you're well supported

11:29

throughout this process I wish I had

11:31

realized it sooner but I was not alone

11:33

in my battle and neither are you

Managing Relationships

A strong support system is crucial for people with IBD. Yet living with IBD can complicate relationships with your family, friends, and significant others.

Life with IBD can be a rollercoaster of physical, emotional, social, and financial complications, and your loved ones often go along for the ride. There are several ways Crohn’s disease and ulcerative colitis can impact your relationships:

  • The ups and downs of IBD can strain relationships over time as your disease alternates between active flares and periods of remission.

  • Your family members and friends often become your caregivers when your disease is flaring.

  • When it is a child with Crohn’s disease or ulcerative colitis, siblings may also have emotional challenges as they the daily needs of the child with IBD are managed.

  • Some people will be supportive of your needs as you manage life with a chronic illness, while others may be less understanding.

You can build and maintain strong relationships as you manage the ups and downs of IBD. Make a point to surround yourself with positive people who care about your physical and emotional health. A strong support system will value and respect you.

Watch our video series on relationships and IBD to hear how other patients and caregivers deal with building a support system.

Rebecca's Story- Being an IBD Caregiver

Video Length 11:51

Rebecca's Story- Being an IBD Caregiver Rebecca shares her personal experiences as a caregiver to her husband, who has Crohn's disease.

Transcript

00:05

my name is Rebecca Kaplan and I've been

00:07

an IBD caregiver for the past twelve

00:09

years I don't think anybody ever

00:12

imagined is becoming a caregiver when

00:14

you're young but it happened for me when

00:17

I was 20 years old my now husband was

00:20

diagnosed with Crohn's disease just two

00:22

months after we started dating and I

00:25

didn't know anybody who had Crohn's I

00:27

didn't know what it meant to have a

00:29

chronic illness and honestly I didn't

00:31

even realize how serious the disease

00:33

would be I knew that he went to the

00:35

bathroom a lot and he was underweight

00:37

and malnourished but I figured he could

00:39

just take some medicine and that would

00:41

be that my true caregiver story didn't

00:45

start until right after we were married

00:47

we moved about three hours away from our

00:50

families to a new state where I had

00:52

accepted a job and we decided to

00:55

transition his care he hadn't been told

00:57

by previous doctors that he needed to be

00:59

seen regularly so it'd been about three

01:02

years since he'd had a colonoscopy and

01:04

in that time he was taking nine pills a

01:07

day he was still going to the bathroom

01:09

25 to 30 times a day he was extremely

01:12

underweight malnourished fatigued to the

01:15

point where he couldn't get out of bed

01:17

and just all around in bad shape so we

01:21

scheduled a colonoscopy with his new

01:23

doctor and when she went in we

01:25

discovered that he had a stricture

01:27

so it structure is a narrowing in the

01:29

intestines and they say that your

01:31

intestinal passageway should be about

01:32

the width of your pinky his was about a

01:35

quarter of the size of your pinky so

01:37

when she went to push the scope through

01:39

she ended up perforating or nicking the

01:41

intestinal wall when he was in the

01:44

recovery room he woke up in about 45

01:47

minutes later as we were trying to be

01:49

discharged he spiked 104 fever and said

01:52

to me and the nurses that he thought he

01:54

was dying and I don't know that I've

01:56

ever been more scared in my life when I

01:58

was in that moment um but at the same

02:01

time I kind of jumped into mamabear mood

02:04

where I was going to do anything and

02:07

everything I needed to do to make sure

02:09

we figured out what was wrong and what

02:11

we needed to do to make it right so what

02:13

ultimately ended up happening is because

02:16

of the perforation

02:17

equal I got into his bloodstream and he

02:20

had an infection so we were in the

02:22

hospital for five days and during that

02:24

time I skipped work so I could be with

02:26

him I was driving an hour back and forth

02:29

periodically throughout the day to go

02:30

check on our five month old puppy

02:31

because as we had no support network we

02:34

had nobody who could take care of him

02:36

and just all around and trying to figure

02:40

out the best way that I could support

02:42

him while not truly understanding what

02:45

exactly his disease was or what would

02:47

happen in the future with it so

02:50

obviously he was very sick at the time

02:52

and that was just the start of a

02:54

two-year period where he was incredibly

02:55

sick

03:01

taking care of your mental and emotional

03:03

health as a caregiver is extremely

03:06

important because I know that if I'm

03:08

overly stressed or anxious I'm not going

03:11

to be able to take care of my husband to

03:12

the best of my ability so I like to do

03:16

things like reading hanging out with my

03:18

friends seeing my family doing silly

03:21

things with my dog to make sure I'm

03:23

disconnecting from the caregiver side of

03:25

my life

03:25

and engaging in the other part of my

03:28

life because I like to think of myself

03:30

as a wife a daughter a friend a sister

03:33

as well as a caregiver and when I pay

03:37

attention to both sides and make sure

03:39

that I'm taking time for myself and

03:41

disconnecting from the caregiving piece

03:44

for a little while I come back refreshed

03:46

I'm relaxed I'm less stressed and I'm

03:50

better equipped to handle the different

03:52

things that are thrown at me because

03:54

when you're a caregiver you never know

03:55

what to expect or when to expect

03:58

something that happens you kind of

04:00

always need to be on your game so making

04:02

sure that you're taking time for

04:03

yourself and doing things that are fun

04:06

really helped me in maintaining my

04:09

mental and emotional health and my

04:11

ability to truly be an advocate for my

04:14

husband

04:20

so like anybody with crohn's disease you

04:23

have really good times and periods of

04:25

really bad times and when I want to

04:28

think about bad times most recently was

04:31

when he my husband was in the hospital

04:34

in the emergency room last year we were

04:36

driving home from a wedding in DC and

04:39

throughout the trip he started feeling

04:41

more and more nauseous and getting to go

04:43

to the bathroom and just not feeling all

04:45

around well and he had dealt with

04:48

something similar in August last year as

04:50

well and we still don't know what it was

04:53

but we ended up in the ER and he was

04:57

getting saline still wasn't feeling

05:00

great they were giving him an T no Tamez

05:02

all of that but we were waiting for them

05:06

to give him more saline now this was a

05:09

hospital that we hadn't been in before

05:10

they obviously weren't very familiar

05:13

with Crohn's disease but we know that if

05:15

he's dehydrated it's going to take at

05:17

least four bags of saline for him to

05:19

feel rehydrated again but the doctor on

05:22

call only put in order for two so we

05:25

went through the two bags relatively

05:27

quickly over a few hours and he was just

05:29

sitting there continuing to feel

05:31

progressively worse and at this point it

05:33

had to have been 8 or 9 o'clock at night

05:35

we had been there for 6 hours already

05:37

nobody was checking on him

05:39

so I had to start stalking the doctor's

05:42

desk and the nurses desk and asking to

05:44

see the doctor and say you know he has

05:47

Crohn's disease he's been vomiting and

05:49

having diarrhea for hours he's still not

05:51

feeling well and he's naturally

05:52

dehydrated because of his disease you

05:54

need to give him more saline and he

05:58

ended up having to stay overnight to be

05:59

observed because he wasn't feeling well

06:01

but of course once they gave him another

06:03

bag and a half of saline it was like

06:05

2:00 in the morning and he finally felt

06:08

like he was better and could handle

06:10

leaving the hospital at that point but

06:13

nobody ever gets discharged that late at

06:15

night when they'd been kept for

06:16

observation so he ended up being in the

06:18

hospital until almost noon the next day

06:21

solely because nobody was paying

06:24

attention or listening to the what he

06:26

needed until I literally had to go to

06:28

the desk and start harassing the doctors

06:30

who were there so that's just an example

06:32

of

06:33

a day in the life of the caregiver you

06:35

know if I see something that's not

06:38

happening I'm not afraid to go and try

06:40

and make sure that he's getting the best

06:42

care possible so whether that's going

06:43

with him to doctor's appointments and

06:45

asking the questions he may not want to

06:48

ask like when is he due for a

06:49

colonoscopy or dealing with people in

06:54

the ER who are not familiar with his

06:55

disease all of that kind of comes with

06:58

being a caregiver and it's hard and it

07:00

sucks at times but I love him and I

07:02

wouldn't have it any other way at this

07:04

point

07:10

so when we first moved to the state we

07:14

were living in at the time when he got

07:15

very sick I didn't really know how to

07:19

cope so I did what I do with a lot of

07:21

things and I went to dr. Google and I

07:23

tried to find other caregivers in my

07:25

position but what I discovered was all

07:28

the information online for caregivers

07:29

was either for parents of kids who were

07:32

sick it was for people caring for older

07:35

adults or it was for people caring for

07:37

cancer patients there was very little in

07:40

general about caregiving and there is

07:42

even less about caregiving as a young

07:45

adult and so I started to blog I started

07:48

to write out what I was feeling and what

07:50

I was experiencing and hoping that my

07:52

personal take on it would help inspire

07:55

and empower others and feel supported

07:58

and connected in their own personal

08:00

journey and through my blog I met a ton

08:02

of other patients and other caregivers

08:04

in similar positions and weirdly enough

08:09

at this point I probably have more

08:11

friends now who have Crohn's disease or

08:13

ulcerative colitis then who don't and

08:15

that's all because of the work that I've

08:17

done online another way that I found

08:19

support was through the grants and

08:21

Colitis foundation so in 2010 I signed

08:24

my whole family up for take steps and we

08:27

did a walk up near Hartford Connecticut

08:29

so for this walk my parents came my

08:32

husband's parents came all of his

08:33

siblings came our niece our aunt and

08:36

uncle our cousins and my husband went to

08:39

a bachelor party and I think that's

08:41

pretty typical of the early stages of

08:44

him coping with his disease he didn't

08:46

really want to be around other people he

08:48

didn't want to talk about it but I had

08:51

this yearning and need to feel the

08:53

community and feel the support feel

08:55

connected to really understand what he

08:59

was going through so that I could best

09:01

help him and we found that through take

09:03

steps and so over the years he finally

09:06

came around and started coming to the

09:08

walks with me and we did three years of

09:10

take steps and then we transitioned to

09:12

team challenge because I had this crazy

09:14

idea that if he could have part of his

09:16

intestines removed I could handle

09:18

running a half marathon now I learned

09:20

that I can't run period but

09:22

I attempted walking the half-marathon

09:24

and he joined me for it even though he

09:27

didn't train and he finished that first

09:29

one and I didn't and then he went on to

09:32

run two more half marathons with Team

09:33

Challenge and I still flutter is today

09:35

I've done multiple take steps walk since

09:38

then I've been a spin for grind cyclist

09:41

Cure's participant and I'm lucky enough

09:44

that I am now a full-time employee for

09:46

the foundation and I get to take my

09:47

personal experience as a caregiver and

09:51

provide my support and my experience and

09:54

help support other patients and

09:57

caregivers going through similar

09:58

situations

10:04

so if I could offer any final words of

10:07

encouragement to other caregivers or

10:08

patients who are living with Crohn's

10:10

disease or ulcerative colitis it would

10:12

be - don't be afraid to be an advocate

10:15

ask questions I tend to err on the side

10:19

of asking more questions and I'm lucky

10:21

that we have a very good relationship

10:23

with my husband's gastroenterologist

10:25

where she humors me and all of my crazy

10:28

questions um but really learning as much

10:31

as you can and really getting grasp on

10:35

not only what the diseases are but what

10:38

the treatments are and what the

10:40

long-term effects and different things

10:43

you'll deal with throughout the course

10:44

of the disease are and you'll feel

10:46

better prepared for the unknowns that

10:48

pop up out of nowhere and another thing

10:51

is to look for support I can't stress

10:54

enough the importance of having people

10:55

around you who understand what you're

10:57

going through who are going to be there

10:59

during the good times and the bad times

11:00

and finding those people so that you

11:03

have your own support system to help you

11:06

cope with the stress and the anxiety

11:08

that comes with being a caregiver it's

11:12

not bad to be anxious or stressed but

11:15

you just want to make sure that you take

11:17

that and you harness it into a

11:19

motivation and power to help your loved

11:22

one get through what they're dealing

11:23

with and lastly don't be afraid to reach

11:26

out to the Crohn's and Colitis

11:26

foundation they have a wealth of

11:29

resources and support for you for your

11:32

loved one for your family members for

11:34

your friends and really help you find

11:37

your own community to get through this

11:40

together and to come out stronger and

11:43

even more motivated and ready to help

11:45

your loved one with the next thing hits

English (auto-generated)

 

Justin's IBD Story

Video Length 10:37

Justin's IBD Story A former football player during his high school days, Justin talks about his experiences living with IBD and how he found a supportive community.

Transcript

00:01

my name is Justin Sanford I'm 24 I was

00:04

diagnosed when I was 14 in high school

00:07

I'm a African American descent when I

00:10

was diagnosed it was actually very

00:12

different because I didn't have a lot of

00:14

issues early on with my disease of

00:17

recent I've been having a lot of issues

00:19

just with new medicines some medicines

00:22

not working adjusting to my body

00:24

but uh the last I would say month or so

00:27

I've had a good doctor and everything's

00:31

been going a lot better for me

00:32

health-wise

00:36

when I was first up when I was first

00:38

diagnosed my family it was it was

00:42

different because they never had anybody

00:45

with the disease really like like this

00:47

in the family so nobody really knew what

00:50

is about what it was my mom did like ton

00:54

of research she would come home with

00:55

like 25 papers of like straight Crohn's

00:58

disease information and just to figure

01:02

out what it was all about because nobody

01:03

ever really heard of it in my family so

01:06

the acceptance was there just because

01:08

since it was something new to all of us

01:11

we all jumped on the board and got it

01:14

together the only thing that was real

01:16

difficult for me I would say was when I

01:18

got diagnosed um I was in high school

01:21

and I was playing football so it pretty

01:24

much shut off my whole football anything

01:27

and then I had to switch sports to

01:29

basketball even though I didn't really

01:31

play as much because any type of hit or

01:33

anything that early and the disease was

01:36

very crucial which was which was a real

01:39

adjustment I was kind of I went from

01:41

being like a real tough kid who can take

01:44

all the hits I really couldn't didn't

01:47

get elbowed in the stomach or anything

01:49

of the sort so I'll be down for about a

01:51

week or so but um that was really the

01:55

only real adjustments I had to do my

01:57

family was really open to it just

01:59

because it was something new not a lot

02:01

of people in my family and actually

02:03

nobody in my family has Crohn's disease

02:04

or I'll sort of cause so I was pretty

02:06

much the first one so they hopped on

02:09

board helped me out every single switch

02:11

of the way and I would I'm so proud for

02:13

that um a difficult time I would say I

02:18

had IBD was probably my first flare was

02:22

probably the most difficult because it

02:25

was something so brand new and it was

02:29

actually my birthday so I went out to

02:31

eat with my family and randomly went to

02:35

like a little buffet or whatever and all

02:38

of a sudden you know I'm just regularly

02:40

eating some rice or so and it was an

02:44

early stages of my disease so I kind of

02:46

didn't look into the diet I was naive

02:50

all right edit so I just was kind of

02:52

just eating whatever and my stomach

02:54

started to feel really shaky went to the

02:57

bathroom tried to go to the bathroom and

02:59

nothing really happened but then when I

03:01

went home my body completely shut down

03:04

and I couldn't move or anything of the

03:07

sort and everybody was so scared cuz

03:10

since it was like the first flare I've

03:13

ever had nobody ever knew what it was

03:14

about or what was going on everybody was

03:17

just like aw man you must know a

03:18

something bad or something and it was a

03:22

reality check to me because I never had

03:26

that feeling before of like kind of

03:29

hopelessness because it was just like I

03:32

couldn't move my body was like I didn't

03:34

feel strong enough to even get out of my

03:36

bed or anything of the sorts the I get

03:40

that they called the hospital and the

03:43

ambulance comes picks me up and they say

03:45

it was my first flare so they explained

03:47

to me in the hospital what that was all

03:49

about and now that when I was learning

03:52

about it the only thing that got me

03:55

through it was the support of like my

03:56

friends and every and my mom and pretty

03:59

much just my whole like close family

04:02

they supported me so well through it

04:05

because since it was the first thing

04:06

that they ever seen heard of there's all

04:09

set with me in the hospital there's so

04:11

many people in the hospital with me for

04:12

the first time that they had to actually

04:14

kick people out and they they wouldn't

04:18

let more than I guess like six people

04:20

coming to the hospital I had like at

04:21

least like probably 15 people in the

04:23

hospital at one time and that was

04:27

probably the best thing ever for me to

04:29

know that I had so much support you know

04:32

and it was just fresh in our minds that

04:35

it was just so brand-new to everyone

04:37

that we all wanted to learn and talking

04:39

to the doctors my friends that are the

04:42

same age as me at this time probably 15

04:44

asking me like asking the doctor like

04:46

hey what does he have to do like we got

04:49

to get him on a diet we got to get him

04:50

on this we got to make sure everything's

04:52

right and that made me feel so good

04:55

about myself that I kind of just had the

04:58

mindset that I would never ever you

05:01

like any of those things happen and they

05:04

and it made me feel better about myself

05:07

and it made my friends feel better

05:08

knowing that they kind of took a step

05:11

with me in the way and that was

05:14

something amazing for me I got at an

05:17

early age because it was just

05:19

mind-blowing to know that I had so much

05:22

support and it was just a great feeling

05:25

to me personally

05:30

I didn't really look for anybody to with

05:34

I would say with Crohn's or anything of

05:36

the sorts because I think it was just I

05:39

was at a young age so at that young age

05:41

of you know like 14 I I kind of was just

05:45

sitting in my own bubble was kind of

05:46

just my own personality and actually the

05:50

same with Joey I actually first time I

05:53

ever met anybody with Crohn's that was

05:56

like a minority or anything was when I

05:58

went to a camp Oasis and it was a big

06:03

refreshment actually it kind of opened

06:06

myself up definitely opened up my

06:08

personality and then you kind of meet

06:10

different people hear different stories

06:11

about different things and how they went

06:14

through the journey of having Crohn's or

06:16

colitis and it kind of just makes you

06:18

feel a little bit better about yourself

06:20

so at first I would say I definitely

06:23

didn't look for it but as soon as I got

06:27

it it was awesome to even talk to people

06:30

anytime you have the issue just throw it

06:32

out to him or anything of the sorts and

06:34

they always had the answers and that was

06:36

a refreshing feeling so just the

06:39

information I would say just knowing

06:41

that somebody else is out there just

06:43

like you and that you could talk to you

06:46

know and you guys never would know that

06:48

you guys would probably come from the

06:51

same place the same stories you guys

06:54

would have and it's it's definitely an

06:56

outlet and for people who you know don't

07:00

want to reach out I would say even for

07:02

myself I didn't want to reach out at a

07:04

young age I kind of just looked look to

07:07

the side like oh I can handle this by

07:08

myself but it's at a young age like that

07:13

I would say the best thing even though

07:16

you're very naive and hard-headed it was

07:19

probably the best thing ever for me to

07:22

go to the camp in actually meet people

07:26

because as soon as I did it just boosted

07:31

my self-esteem I felt better about

07:34

myself like oh wow I'm not the only

07:37

person you know with this disease

07:39

because around my town nobody even has

07:42

her

07:42

of IBD or kron4 colitis I was pretty

07:46

much like the first like the second

07:48

person in my school to have it and it

07:51

was just a refreshing feeling to know

07:53

like okay this I meet people I meet

07:56

probably about 400 people for a week and

07:59

it was probably the best week that I

08:02

ever had and it was amazing

08:07

even though you might feel alone there

08:12

are people out there that have the same

08:16

story come from the same background as

08:19

you and even if they don't they it's

08:24

it's a bond that I feel I can never be

08:28

broken

08:29

cuz I would say the first time I ever

08:32

met somebody or I talked to somebody

08:34

with the disease it was a big relief off

08:39

of my shoulders to know that wow

08:42

somebody feels this pain that I feel all

08:45

the time and it was it was it was great

08:50

to hear a lot of stories to see people

08:54

for the first time that actually you

08:58

would never even think would would even

09:02

look or look the part of having a

09:05

disease that is very very uh how can I

09:09

say having a disease that is very I

09:15

wouldn't say life-threatening but like

09:18

it's long term long term disease you

09:22

meet people who are just great minds

09:25

great stories great personalities and it

09:29

helped me out so much to the point where

09:31

I would just talk to them for hours on

09:34

end and some of my friends that I live

09:38

with close to my town we actually get a

09:40

little jealous that I would talk to

09:42

somebody from a different state for five

09:46

hours about how I couldn't go to the

09:48

bathroom and it would get jealous of the

09:53

fact like how can you talk to this

09:54

person well you could talk to me it's

09:56

just like there's a bond that is just so

09:59

strong that like it's it's it's just

10:02

it's the best feeling in the world to

10:05

know that you're not alone and my words

10:08

of encouragement will just be be a

10:12

little outgoing try to try to go out

10:17

there and maybe go to camp Oasis or

10:21

look at CCFA and see some of those step

10:23

one events and get out there and see

10:26

what you see who you can meet cuz I

10:29

guarantee you the first time you do it

10:31

will probably be the best time of your

10:33

life you'll meet some of the best people

10:35

and you'll never regret it

José's IBD Story

Video Length 9:13

José's IBD Story José was an avid boxer, diagnosed with ulcerative colitis as a young man. After connecting to a community of others like him, he felt support like never before.

Transcript

00:03

hi i'm jose torres of mexican and puerto

00:06

rican descent

00:07

I am currently 29 I was diagnosed when I

00:10

was 18 in college and long story short

00:13

for my disease journey in a nutshell

00:15

when I was diagnosed it was difficult to

00:17

get to diagnosis and I ran through every

00:20

medication and treatment possible from

00:22

steroids to biologics and ended up being

00:25

surgery that was the needed treatment

00:28

for me so I got the j-pop surgery done

00:30

several years ago and I've been

00:32

fortunate enough to be in great health

00:33

ever since then

00:38

when I was diagnosed that was actually

00:40

an amateur boxer so the first thought

00:43

was something happened during a match or

00:46

a sparring match so that was like the

00:49

first inclination the second one was

00:52

possibly like oh you just have a virus

00:54

and it'll go away so yeah we definitely

00:55

went through those motions of looking at

01:01

diet and other outside reasons as to why

01:03

I was having those symptoms my family

01:07

kind of didn't know how to react to it I

01:09

didn't know how to react to it I mean

01:12

he's not really not known in the Latino

01:14

community so we didn't even know what it

01:17

was

01:18

there was definitely a barrier to

01:19

diagnosis um the first hospital I was

01:23

being treated at ran tests for weeks and

01:26

didn't know what it was until they

01:27

finally diagnosed me with Crohn's

01:30

disease but then through independent

01:32

research of you know myself and my mom

01:35

looked into it we realized that Hospital

01:38

wasn't actually treating us properly so

01:41

we ended up going to another hospital

01:42

where they properly diagnosed me with

01:44

ulcerative colitis so that was

01:47

definitely a barrier and then as far as

01:50

acceptance that that wasn't difficult it

01:52

just now we knew what it was so my

01:54

family is very small so we did come

01:56

together and the support was was there

01:59

and I couldn't have asked for for a

02:01

better support for my family in that

02:02

sense with the medications though there

02:04

was an issue I know in my family at

02:08

least we don't like taking medicine

02:10

unless it's absolutely necessary and my

02:13

disease got so bad so fast it I had to

02:17

go to steroids first I was on remission

02:20

for a year and then nothing would work

02:22

so then we had to try biologics so at

02:24

every step of increasing medication

02:26

there was resistance there because we

02:28

didn't want to take that step

02:29

um and so eventually it got to the point

02:32

where we had to do the j-pop surgery

02:34

because I was literally dying in bed I

02:38

chopped like on Japan's they're feeding

02:39

me through a tube mom and yeah so the

02:43

journey was rough but you know initial

02:45

acceptance was difficult but the support

02:47

was there and and everything ended up

02:49

working out

02:55

we're not too close to the extended

02:58

family so it was more of like it got

03:02

just word went across from family member

03:05

to family member and when I was in the

03:07

hospital going through surgery

03:08

recovering they did come and they did

03:10

show their support so that wasn't you

03:13

know too much of an obstacle with

03:15

regards to my family back in Mexico I

03:17

prior to being diagnosed I would visit

03:20

once a year once every other year um

03:23

after my diagnosis because we live in

03:26

very rural Mexico like it's literally

03:28

middle of nowhere um I took some time

03:31

off from being there because my G I

03:33

didn't think it was quite safe enough

03:36

yet for me to live in those conditions

03:39

um but once I did eventually go back my

03:42

grandmother who does speak to my family

03:44

down there regularly had already told

03:46

them the story and I think they didn't

03:49

quite understand it and so they

03:50

physically saw me come back and then I

03:53

was able to kind of explain it to them

03:55

better like what my journey was and

03:57

since they already had that background

03:59

from my grandparents they were more open

04:01

to it

04:02

um and with regards to friends I keep a

04:05

very small circle to begin with and I

04:08

did have some friends come and visit me

04:10

while I was in the hospital as well so

04:12

for the most part anyone that was close

04:14

to me I was pretty comfortable with

04:16

sharing it especially with that initial

04:19

support from my immediate family that

04:21

kind of gave me the courage I guess to

04:24

share that with everyone else in my

04:26

close circle and everyone who I did

04:29

explain it so I can see there was some

04:30

confusion they weren't quite sure

04:31

especially like my other you know Latino

04:33

friends they were like huh and

04:35

especially with you know Latino diet

04:37

some of it is you know fried food meats

04:41

that usually aren't particularly great

04:43

for IBD patients so explaining that part

04:47

as well as with the with the various

04:52

unappealing symptoms that go along with

04:55

it kind of finding a way to explain that

04:58

without you know TM I was was a bit of a

05:02

challenge but overall again because I

05:05

keep a pretty close circle to begin with

05:08

it was it was difficult at first but it

05:12

got easier and everyone in my circle is

05:15

very accepting and supportive for me the

05:20

most difficult time in my disease

05:23

journey would probably have to be the

05:26

point of diagnosis I feel like being

05:28

diagnosed at 18 it's very different

05:31

psychologically from being diagnosed as

05:33

a younger child that is my freshman year

05:36

of college so it was a lot of questions

05:40

running through my head right like when

05:41

you say you get told by a doctor you

05:44

have this disease there is no cure it's

05:49

okay how is my life gonna change

05:51

will I ever be the same how am I gonna

05:55

have a normal life so you go through all

05:57

these these questions and and then that

06:00

leads to self-doubt almost to a place

06:03

you know of depression for some time

06:05

until you kind of figure it out and what

06:08

got me through that was the support of

06:10

my family like my mother would be there

06:13

and sleep on a cot on the side of my

06:15

hospital bed and would not leave um the

06:18

texts from my friends the family visits

06:21

my doctors who said hey look this this

06:24

disease does not have a cure but there's

06:26

treatment out there so that's let's keep

06:28

trying until we find the one that works

06:30

for you that will give you the most

06:32

normal life possible um so it's

06:35

definitely definitely the support of

06:37

family friends and my medical team that

06:39

that helped me get through that initial

06:41

shock of okay my life is never gonna be

06:47

the same but that doesn't mean my life

06:49

is over

06:50

there's plenty of opportunity left ahead

06:56

so my words of encouragement for anyone

07:01

who has IBD you know given my experience

07:04

in hearing the experience of others is

07:06

to know that you're definitely not alone

07:09

no matter how dark of a place you may

07:12

you may get to just know that you will

07:15

find support in family in close friends

07:19

through the Crohn's and Colitis

07:20

foundation whether it's

07:22

a support group or taking the step I

07:25

took in volunteering at camp polices

07:27

which is just completely life-changing

07:29

um even participating an event or even

07:33

just as you get comfortable with it

07:36

slowly you know feel free to be open to

07:39

whoever you feel comfortable with being

07:41

open to and chances are they know

07:43

someone or they know someone who knows

07:45

someone who has IBD so just know that

07:50

you're not alone there's their support

07:52

out there for you to find and for me I'm

07:57

ironically grateful for this journey it

08:01

definitely changed my entire perspective

08:04

it changed my personality

08:07

it made me view things in such a

08:09

different way so there there is

08:15

definitely light there and again know

08:18

that there is treatment and there is a

08:21

road to living a normal life I never

08:25

thought about looking for or looking to

08:28

connect with another matheno another

08:31

minority with IBD and that's just my

08:33

personality um but the first time I did

08:36

come across that was when I decided to

08:39

volunteer at camp alesis as the

08:41

counselor that's actually where I met

08:43

Justin so even though it wasn't

08:45

something I looked for when Justin and I

08:47

met it was just an instant connection

08:50

and we just clicked because of that you

08:53

know similar story of having you know

08:56

IBD being a minority and it wasn't until

08:58

I met some younger campers maybe like

09:00

one or two of them that were laughing

09:02

you know that actually met another

09:03

Latino with IBD so again it was nothing

09:06

I but once I found it it was it was nice

09:10

and it was definitely a great connection

English (auto-generated)

 

Navigating Social Situations

Everyone needs to get out of the house and have fun, whether it’s a night out with friends, seeing a movie in the theater, cheering on your favorite sports team, or going to a birthday party.

Socializing with Crohn’s disease and ulcerative colitis means having to plan ahead.

  • Locate bathrooms at your destination and along the way.

  • Talk to your friends and family about what kind of support you might need when you are out.

  • Check out restaurant menus ahead of time to make a meal plan without feeling rushed.

Relationships and Dating- Jacalyn’s Story

Video Length 11:11

Relationships and Dating- Jacalyn’s Story Jacalyn shares her experiences when it comes to dating and relationships as someone living with IBD.

Transcript

00:01

my name is Jacqueline kerbecs 28 years

00:04

ago I was diagnosed with ulcerative

00:07

colitis ulcerative colitis has had a

00:10

major impact on my life both

00:13

professionally and personally and I have

00:16

to say looking back over the last twenty

00:18

eight years there were a lot of times of

00:21

turmoil and pain and humiliation and

00:24

embarrassment but I do it all over again

00:28

because it's made me a very strong

00:30

person physically emotionally and

00:33

mentally and I don't believe that I

00:35

would be who I am today

00:37

nor would I've had the opportunities to

00:40

meet the people I've met and to try to

00:42

help make a difference in other people's

00:44

lives if it weren't for having

00:45

ulcerative colitis in terms of personal

00:48

relationships there are judgments that

00:52

people make and also as a patients I

00:54

felt damaged

00:57

I felt inferior I felt like I wasn't

01:00

normal and that people could not

01:03

understand what was wrong with me and

01:06

now that I've shared my story recently

01:09

as of two months ago I have found that

01:13

people are still confused as to what

01:17

ulcerative colitis is and the impact

01:20

that it actually has on patients I've

01:23

had people say to me well if you got

01:25

more sleep or if you ain't different

01:27

food or if you're weren't under stress

01:29

and I've tried to explain that the

01:32

disease is the stress so in terms of

01:36

relationships there's a profound impact

01:39

in your career in your work that there's

01:42

fear of being judged maybe fear of not

01:45

being promoted fear of not being even

01:48

opportunities because you're sick and in

01:51

terms of personal relationships I've had

01:53

people say to me you know in a dating

01:56

situation I don't want to date anyone

01:58

who has a disease so family members find

02:02

it hard to understand people try to help

02:05

but unless you're a patient yourself you

02:08

probably don't understand what patients

02:10

are going through so I think that there

02:12

are challenges in the

02:15

building relationships where people can

02:17

understand and support you I've had both

02:21

negative and positive feedback from

02:25

people when I shared that I have

02:26

ulcerative colitis one of the examples

02:29

that didn't go so well was I had been

02:32

dating a gentleman whom I met online and

02:34

it was about our eighth dates and I felt

02:37

like I should share the fact that I had

02:39

ulcerative colitis because he actually

02:40

just shared with me that he was a

02:42

diabetic so when I shared that I had all

02:45

sort of colitis he first of all didn't

02:47

understand what that was and seemed to

02:49

get a little bit angry and I told him

02:52

what the illness was and how it impacted

02:55

me and he said I'm really sorry you're a

02:58

nice person but I can't date a sick girl

03:01

and I said I never really thought of

03:03

myself as a sick girl and I wish you

03:08

would reconsider and he said absolutely

03:10

not and he he got up and left the table

03:13

and just left me sitting there and I

03:16

felt so small and invisible and hurts

03:22

and I felt like why me why am i

03:26

struggling with this illness number one

03:29

and now a guy who I really thought I

03:30

liked won't even give me an opportunity

03:33

and so I left the restaurant pretty

03:37

deflated and feeling defeated and the

03:40

next day I thought to myself I'm really

03:43

glad that I found out who that person is

03:45

because that person's not worth my time

03:47

I am not defined by an illness I have an

03:51

illness but I'm not the illness on a

03:54

positive notes through mutual friends I

03:58

met this gentleman and we had a very

04:02

candid conversation from the first time

04:05

that we met about the fact that I had

04:06

all sort of colitis and I thought let me

04:09

just put it out there right away and see

04:11

how it's received and unlike the other

04:13

instance this gentleman was extremely

04:16

supportive and said that I was beautiful

04:19

regardless inside and out and that he

04:22

would love to support me and and learn

04:25

more about ulcerative colitis

04:28

and how he could be an extension of my

04:31

life and helping me live with it and I

04:35

felt so amazed and relieved that

04:40

somebody whom I thought a lot of anyway

04:44

was so compassionate and empathetic and

04:47

supportive so from that my opinion of

04:52

him and myself and actually having a

04:54

relationship with someone that could be

04:56

viable completely changed

04:58

I've decided especially in the new

05:02

relationship that I just tell people

05:04

right off the bat what the situation is

05:06

and I tell them that it does have an

05:08

impact on my life but that I figured out

05:11

a way to deal with it that emotionally

05:15

I'm completely fine

05:18

and they shouldn't be concerns that it's

05:22

going to overpower our connection our

05:25

relationship the time that we spend

05:27

together and in terms of family it's

05:31

nice that since I've had this for a long

05:34

time they understand that there's

05:37

certain things at certain times of the

05:39

year that I'm not going to be able to do

05:41

so it takes a lot of the pressure off

05:43

because we know I can only eat certain

05:47

foods we know I can only eat certain

05:49

times during the day we know that my

05:51

greatest time when I'm at my best is

05:54

from 2 o'clock in the afternoon until 9

05:57

o'clock so we try to arrange events

06:00

around that so I think that it's just

06:04

important to first of all respect

06:08

yourself love yourself know that even

06:13

though you have an illness that you can

06:16

pretty much do anything that you set

06:18

your mind out to doing and become a

06:21

stronger person that people can actually

06:23

look up to and think wow look how strong

06:27

this person is what they're overcoming

06:29

and I think that inspires people to want

06:32

to get to know you better

06:33

at least that's been my experience since

06:35

twenty eight years ago I was diagnosed

06:37

with ulcerative colitis and it actually

06:39

happens the diagnosis right

06:42

after I got engaged to my ex-husband

06:44

which I'm not sure if that's something

06:46

to do with it but anyway I feel like at

06:50

that point in time I wasn't really able

06:55

to deal with the disease myself

06:57

especially as a woman I had all kinds of

07:01

insecurities about how that was going to

07:03

impact my marriage to be and my

07:08

relationships with other people friends

07:09

family and as the years went on I really

07:13

was still hiding in plain sight and

07:17

embarrassed and struggling with even

07:20

being in business meetings I entertain

07:22

clients for a living and I can't tell

07:25

you how many meals I've had to run out

07:27

of in the middle because I wasn't well

07:29

and having to be concerned that those

07:33

relationships might be put in jeopardy

07:35

because maybe I would lose a deal

07:37

because of the fact that I was sick but

07:40

as time went on and I got older and I

07:43

developed techniques that I still use

07:45

every single day I've been able to

07:49

channel those negative emotions and

07:53

negative feelings that I really put upon

07:55

myself or that I felt that were put upon

07:59

me by other people's insecurities and

08:02

I've been able to channel them into

08:03

helping other people and listening to

08:07

their stories and letting people know

08:09

that you're not alone I'm not alone that

08:14

what we're experiencing is just part of

08:18

an illness that again does not define us

08:22

so I feel that my relationships today

08:25

are much better in terms of the level of

08:31

depth and the level of sharing and I

08:34

share the fact that I have this illness

08:37

and what it's meant to me with as many

08:39

people who will listen as often as I can

08:43

because I know that everybody knows

08:47

somebody who struggles with IBD and that

08:50

people just don't want to talk about it

08:52

so from being divorced

08:55

since 1999 and I've had long-term

08:59

relationships in since then I never ever

09:02

thought I would consider getting married

09:04

again or that I would consider living

09:06

with anyone again and I can tell you

09:08

today that I absolutely consider both

09:11

because the the way I felt about the

09:15

disease the way I felt about myself

09:17

having a disease has completely shifted

09:20

and now I feel like this is who I am

09:23

this is what I've got and I've got a lot

09:27

to offer so I'm not living in fear and

09:29

I'm not hiding anymore and I'm not

09:31

defining myself by having an incurable

09:35

disease

09:39

I meditate everyday I pray everyday I

09:43

run diffusers with oils so that I can

09:48

have some a beautiful smell surrounding

09:50

me all the time and I exercise to the

09:56

limit that I can push myself which is

09:58

pretty far so I share all this because

10:03

when the times are tough which they come

10:05

and I share that when I'm sick three to

10:09

six months of the year I might be

10:10

running to the bathroom forty or fifty

10:12

times a day sometimes I'm just sleeping

10:14

in the bathroom because it's just so

10:16

exhausting but I think about how I can

10:19

will myself that day to get up and do

10:24

something productive that's going to

10:25

make me feel good about myself and every

10:29

single day I have to tell you I do it so

10:33

if you can concentrate on that and if

10:35

you can think about what it is that

10:38

inspires you the most

10:40

in life your disease will not hold you

10:43

back it'll get in the way for sure but

10:47

don't give up and don't be alone and

10:50

don't be in hiding I'm starting a

10:52

support group next month and I'm hoping

10:54

I can reach out to individuals and

10:56

understand their story so that I can I

10:59

can share other people's stories of

11:02

struggle and of success so your success

11:07

story is out there too I promise you

English (auto-generated)

 

Relaxing Jazz & Bossa Nova Music Radio - 24/7 Chill Out Piano & Guitar Music - Stress Relief Jazz

Cafe Music B

#myIBD: Clay Smith

Video Length 4:23

#myIBD: Clay Smith Crohn's patient Clay Smith shares how he copes as a gay man with the psychosocial impact of his disease.

Transcript

00:00

initially it was a relief to be

00:02

diagnosed with Crohn's disease because

00:04

it meant that something was actually

00:05

going on and I wasn't making it up

00:08

however quickly I was overwhelmed by the

00:11

fact of I have no clue what Crohn's

00:13

disease is or what it entails and I mean

00:16

this was over a decade ago so my

00:18

gastroenterologist didn't really go into

00:20

that with me it was this is your

00:21

diagnosis and this is the medication

00:23

we're gonna start you on and everything

00:25

in between was solely left up to me to

00:27

figure out I was immediately thrust into

00:30

this dual existence of having to take

00:33

care of myself and manage the disease

00:34

and simultaneously deal with the

00:37

numerous questions that my loved ones

00:39

and friends and family and peers would

00:42

all present and everybody had questions

00:46

and society's expectation and this is

00:48

what they don't tell you when you're

00:49

diagnosed is that once you know what the

00:51

disease is you're supposed to be an

00:53

expert about everything overnight and I

00:56

was getting all these questions and I

00:58

had no answers the thing that you're not

01:02

told upon an IBD diagnosis is it is not

01:06

a singular effect on your life you have

01:11

to navigate it yourself you have to

01:12

navigate it for your friends and your

01:14

family your co-workers and that can at

01:17

times be a lot but you need to give

01:19

yourself a break and be kind because

01:21

nobody has all the answers being gay has

01:25

no effect on my medical care you know my

01:27

doctors have never said all we have to

01:29

do a different medication or anything

01:31

like that it's still the same

01:32

I think the correlation is definitely

01:36

though with my my mental care in the

01:39

fact that you know I grew up in an

01:40

environment as a child where being a gay

01:43

child a gay man was not accepted and I

01:47

was very much aware of that so at a

01:49

young age I decided well in order to be

01:52

worthy of anyone's acceptance or love

01:54

I'm gonna have to do everything

01:55

perfectly I have to be the best at

01:58

everything I have to be the smartest I

02:00

can show no weakness everything has to

02:02

be flawless and then maybe I can earn

02:06

you know the acceptance of others or the

02:08

love of others or you know being viewed

02:10

as worthy by others

02:11

and you know dating is a really tough

02:14

aspect of life when you have a chronic

02:16

illness you know it's always a question

02:18

of you know when do i divulge this

02:19

information to a guy I'm dating and how

02:22

do I do it in a way that doesn't make

02:23

him run for the hills and again it's all

02:26

about worthiness you know I was feeling

02:28

as if I wasn't worthy and my my

02:30

self-talk was so negative that had

02:32

convinced me if I share this information

02:34

with him he's probably just going to see

02:37

that I'm not worthy of continuing this

02:40

relationship as opposed to someone who

02:41

doesn't have IBD and so that's what I

02:43

talk to my therapist about and my

02:45

therapist has given me tools and

02:47

exercises and resources to try to manage

02:51

my self-talk and try to manage how I

02:54

respond to the disease it's a little

02:56

embarrassing to say it out loud because

02:59

when I acknowledge those issues and

03:01

challenges and I say it out loud I can

03:03

hear I can hear the ridiculousness of of

03:06

it all

03:06

but it doesn't change the fact that

03:07

those are very real feelings that cause

03:09

negative emotions for me and I know

03:10

countless others so it's learning how to

03:13

manage that and I find if I embrace my

03:16

authenticity and I just be my my

03:18

authentic self then that is by far the

03:22

best medicine for my soul and it helps

03:26

to relieve stress and it keeps me

03:29

focused and I also know that my active

03:32

lifestyle has been a huge help in

03:34

helping me sort through those challenges

03:35

and try to be the healthiest me that is

03:40

possible the journey of dealing with all

03:42

of that it's far from over

03:44

you know advances in treatment are

03:46

phenomenal what the Crohn's and Colitis

03:48

foundation is doing is truly remarkable

03:52

and I have discovered that looking at

03:55

that with a hopeful attitude and then

03:57

it's just surrounding myself with

03:59

quality support is key to you know

04:02

maintaining happiness and then having

04:04

people that I can talk to in a

04:07

vulnerable way and express you know what

04:10

I'm experiencing at the time is truly

04:13

helpful and I would advise that to any

04:15

patient you know dealing with disease

04:17

and especially anyone the LGBTQ

04:20

community

04:20

you know faces some of these same

04:22

challenges

 

Body Image

How you feel about your physical appearance and how your body functions can have both a positive and negative impact on your self-esteem, your relationships, and your mental health.

Body image is something many people struggle with, but living with a chronic illness can amplify negative feelings about your body. IBD can have an overwhelming impact on how you look and how you feel, both emotionally and physically, as you deal with medication side effects, disease symptoms, nutrition changes, and surgery.

 

Body Image with IBD- Emily’s Story

Video Length 12:30

Body Image with IBD- Emily’s Story Emily was diagnosed with ulcerative colitis in her teens, but shares some of her challenges related to body image.

Transcript

00:03

hi my name is Emily Morgan and I'm 24

00:07

years old and currently attending UNC

00:09

Kelling school of global public health

00:11

I'm pursuing a master's in public health

00:13

and concentrating in health behavior I

00:16

was diagnosed with ulcerative colitis

00:19

fortunately pretty quickly when I was 13

00:21

years old my diagnosis happened as a

00:24

result of experiencing the textbook

00:26

symptoms that showed up not long after a

00:28

really tough battle with mono in the

00:30

eighth grade

00:30

I really actually want to talk about

00:33

body image because I've both struggled

00:34

with and embraced the different physical

00:37

and mental hurdles that have kind of

00:39

come along the past ten or so years of

00:41

being in IBD patient in 2010 when I was

00:46

16 years old I had a two-step ileal

00:48

pouch an anastomosis I think that's how

00:51

you say that's how I've always been

00:52

saying it but it included having a

00:55

temporary ostomy for quite a few weeks

00:57

so I know this isn't the case for

00:59

everyone but I really feel like my

01:01

surgeries that I have changed my life

01:03

for the better

01:04

I had really reached a point where I had

01:07

tried every available treatment that was

01:08

available at the time but wasn't to the

01:10

point where I needed to have emergency

01:12

surgery but I guess at the end of the

01:15

day I was really sick and tired of being

01:16

sick and tired I was especially

01:18

especially over needing prednisone and

01:22

having steroids and I just got to the

01:25

point where I had to be on steroids to

01:27

control my flares so the first time

01:29

since being diagnosed I really felt like

01:31

I had gained control of my situation and

01:33

what was happening to my disease in my

01:35

body it wasn't all that easy though you

01:38

know I had there were moonface comments

01:40

that happened after being on prednisone

01:43

people were asking me if I was okay

01:46

because I lost so much weight you know

01:48

and invisibles what is I know that IBD

01:50

is known as an invisible illness but to

01:52

me it was it was anything but invisible

01:54

due to some of the side effects that

01:56

came with some of the medications that I

01:58

was taking but what's really crazy is

02:02

about when I had an ostomy there's this

02:05

point where it really was overnight I

02:07

had lost so much weight that it was not

02:09

even before surgery it was kind of

02:11

having surgery made me lose a lot of

02:13

weight due to not really having a

02:15

proper nutrition with my awesome e so it

02:18

was difficult to adjust to at first but

02:20

I was really happy to be on the better I

02:23

was better felt better on the inside

02:24

having an awesome me and I felt

02:26

empowered and in control because I felt

02:28

healthier but um there's different

02:32

things that come along with surgery like

02:33

scars and again just the transitions

02:36

that your body makes from not being on

02:38

medication anymore switching medications

02:40

and it just really took a toll on me

02:44

because I was summertime I you know

02:47

couldn't wear some of the bathing suits

02:48

that I wanted to wear but I still wanted

02:50

to do everything that I knew I was able

02:53

to do by that point I think I had gone

02:55

to the place and owning my disease where

02:59

I didn't want to let anything stop me

03:00

however I was dealing with even kind of

03:03

what I would say was a new body so

03:05

currently I'm doing very well I would

03:09

put my I would place myself in kind of a

03:11

state of remission I am not taking any

03:14

medication in addition to a few

03:17

strictures I still deal with some

03:19

vitamin deficiencies sometimes anemia

03:21

but I've actually been struggling the

03:24

most with what I'd say are more normal

03:26

body image issues as a recently I would

03:30

say kind of these social psychosocial

03:32

aspects that come up with being

03:35

diagnosed with a chronic illness or what

03:36

or my biggest battle right now and

03:38

that's why I also think it's really

03:39

important I know that it's becoming more

03:41

of a buzzword kind of you know mental

03:43

health and things like that

03:49

you know due to some physical changes

03:51

that I've gone through it's sometimes

03:53

harder to wear the latest trends that

03:55

was also something with having an ostomy

03:57

having to figure out okay how do I wear

03:58

clothes with this thing how do I find

04:01

things that you know don't show show the

04:04

bag because at that time I you know

04:06

wasn't super comfortable I didn't want

04:07

people to know over time I kind of just

04:11

was like I'm just gonna wear what I want

04:13

to wear and I'm gonna be comfortable but

04:15

it is everyone's different and it takes

04:16

some time to really I'd say it takes

04:19

time to embrace kind of who you are and

04:21

that's anyone not just people living

04:23

with a chronic illness one particular

04:24

story I was in high school and first of

04:29

all girls in high school I mean anyway

04:31

but I was using a bathroom and I will

04:33

never forget when they came in and made

04:35

comments about someone who had been in

04:38

there for a really long time and just

04:40

things like that so I think that just

04:42

the first one made me feel insecure as a

04:43

person in general but then when I came

04:46

out of the bathroom due to being on

04:48

prednisone and some other medications

04:50

that I was taking my face I've really

04:52

changed in the past month or so and so

04:55

comments are made asking you know why I

04:57

hadn't taken different medications or

05:00

done anything about my acne or how I

05:01

should see a dermatologist and that

05:03

again is I didn't even know how to react

05:06

I just remember multiple times going

05:08

home crying to my mom or you know

05:11

talking to friends about you know what

05:13

they were doing about their skin

05:15

problems or what they were doing to you

05:18

know stay in better shape and so it's

05:21

these kind of really negative events

05:23

that luckily for me made me want to do

05:26

something about it so I talked to my

05:27

doctors I talked to my friend you know

05:31

for me finding others like me realizing

05:34

that I wasn't alone one of the times in

05:37

particular that stands out to me in

05:39

regards to just body image with IBD I

05:42

was visiting a friend that I hadn't seen

05:43

in a very long time her family had moved

05:46

away when I was in middle school and we

05:48

were still very close friends so we went

05:50

and visited them for a really fun long

05:53

weekend when I was in high school

05:54

interestingly I also got a Facebook for

05:57

the first time in high school so you

05:59

know as as we're all aware you kind of

06:01

upload different profile

06:03

pictures and different life event

06:04

pictured on Facebook but um I actually

06:07

had not been you know updating anything

06:10

and having actually not even been

06:12

willing to be in pictures at the time

06:14

so it was very interesting how you know

06:17

this friend of mine the only way to keep

06:19

up with me let's through Facebook and

06:20

different social media ways and things

06:24

like that she was not aware of kind of

06:27

some of the ways my body had changed

06:29

over the over just I guess the past few

06:33

years do we haven't seen each other she

06:35

knew actually that I had colitis and

06:38

that I have developed but you know been

06:39

diagnosed with this disease and I

06:42

couldn't help but notice that she was a

06:45

little bit surprised at how I looked and

06:46

to me she didn't say anything she was I

06:50

mean she's one of my best friends and I

06:51

don't think she would ever say anything

06:53

however it almost bothered me more to

06:56

see that she definitely not only noticed

07:00

that there are things different but I

07:01

think because I lived with myself every

07:02

day I just gotten kind of used to some

07:04

of those changes so just really I guess

07:07

hurt my feelings that made me feel

07:09

uncomfortable knowing that okay maybe

07:11

I've gotten used to it because I see

07:13

myself everyday you know it's me however

07:15

it just made me wonder how other people

07:18

had thought her you know maybe they

07:20

haven't had as many or had as obvious of

07:23

a reaction to some of the changes that I

07:26

had kind of encountered versus you know

07:29

showing them or not so that was I guess

07:31

that was really hard for me and trying

07:33

to figure out okay there's nothing I can

07:36

do you know it was either kind of be on

07:38

these medications and feel better being

07:40

a constant player be in the hospital and

07:42

so I think it was this lose-lose for me

07:44

there was a really dark time I didn't

07:46

like you know when you when you hang out

07:50

with your friends everyone takes

07:51

pictures or putting pictures online and

07:53

so it really was hard for me if I if I

07:55

would go out with friends or be with

07:57

friends and being pictures I would

08:00

really sometimes cringe and I guess not

08:05

look forward to seeing if those pictures

08:06

would show up the line or not because I

08:08

didn't like I really didn't like how I

08:10

looked and to me that was also hard

08:11

because I knew that that wasn't how it

08:15

should be you know a

08:17

16 15 16 year-olds should not feel

08:20

scared to be with her friends and to

08:23

take pictures with her friends at

08:24

different birthday parties and different

08:25

events and that was really hard for me

08:28

because the pictures that did show up

08:30

were very visibly different than

08:33

pictures when I either wasn't on

08:34

prednisone ER or wasn't even before I

08:36

was diagnosed that was huge

08:45

I you know graduated from college worked

08:48

for a couple years and now I'm back in

08:49

graduate school and still working a

08:51

little bit I think I definitely am not

08:55

shocked or surprised when I kind of go

08:58

through these I guess different

08:59

different seasons of life are these

09:01

different waves of emotion or you know

09:03

states of mental health because I think

09:07

with the increase in social media

09:09

platforms and just the prevalence of

09:11

media in general in our everyday lives I

09:14

I do notice things you know you notice

09:18

these Instagram accounts or these you

09:20

know Facebook platforms where it's all

09:22

about fitness or it's all about you know

09:24

do this to look this certain way which

09:27

makes us think that we need to look that

09:29

certain way and so I still have these

09:30

times where I'm kind of like it's going

09:32

through different feeds or even just

09:34

talking with different people about

09:35

activities that they're involved in and

09:38

I have to I think I the way that I

09:42

handle it is that I kind of I kind of

09:44

talked to myself actually I realized

09:46

what I'm doing I realized that I'm

09:48

sometimes it's kind of either talking

09:50

down to myself having negative thoughts

09:53

about myself or kind of wishing that I

09:58

could I guess comparing myself so I you

10:00

know wishing that I could look more like

10:02

this person or be more active like this

10:04

person because then if I was active I

10:06

would look better and so I have to kind

10:08

of take this make a personal effort to

10:12

take a step back and realize that what

10:14

I'm doing is not gonna help me in any

10:16

way shape or form but then also I

10:19

realized that kind of utilizing my

10:21

support group and my friend group and my

10:23

family to either distract me or to also

10:27

kind of fess up you know I'll talk to

10:29

friends and say hey you know I was just

10:31

looking through this and I'm kind of

10:32

feeling really you know bad so let's go

10:35

do something and maybe that is

10:36

exercising maybe though it's just kind

10:38

of surrounding yourself with people who

10:40

make you feel loved and make you

10:42

understand your work that's a person

10:44

because our like our physical appearance

10:47

and the way that we look is not who we

10:49

are you know I am NOT Emily Morgan you

10:53

know shorter hair blue eyes that's not

10:55

how you introduce yourself to someone

10:57

you introduce yourself to

10:58

someone by kind of would have you what

10:59

you've accomplished and what you're

11:00

doing in life and so I think it's really

11:02

important for me to remind myself of

11:04

that you know not the same size that I

11:06

was when I was 16 but I really think at

11:09

the end of the day my advice is to find

11:12

what works for you you can't worry about

11:15

the fads and you have to be comfortable

11:17

because being comfortable aids in

11:19

feeling and acting more confident you

11:22

know they kind of say fake it till you

11:23

make it

11:24

and I'm sitting here kind of telling

11:25

this to everyone else however I still

11:27

struggle with it daily and it is and it

11:30

is for everyone not just IBD patients

11:32

you know being a young adult brings many

11:35

many changes both physically mentally

11:38

and in life in general you know there's

11:39

there's so many transitions going on

11:41

whether you go to college or don't go to

11:43

college you know just entering into your

11:45

20s and then your 30s is it's really

11:48

daunting and if there's one thing that I

11:49

feel like it's talked about most amongst

11:51

my peers in myself is is that kind of

11:54

to-do list how do we tackle everything

11:57

that we not only want to do but arguably

12:00

need to do to kind of maintain that

12:02

state of well-being and enough happiness

12:04

and there are so many support groups

12:07

people but just online resources you

12:09

know if you're not comfortable reaching

12:10

out to an actual person or to the

12:14

foundation there are ways to kind of

12:16

take this into your own hands and

12:18

realize that you are in control and you

12:20

can be in control so ask questions do

12:23

your own research but muscle will

12:25

advocate for yourself because you're

12:27

worth it

Related Resources

Fact sheet

Emotional Factors (.pdf)...

Fact sheet on emotional factors

Infographic

Mental Health and IBD Infographic...

Mental health and IBD infographic

Fact sheet

Managing IBD as a Young Adult (.pdf)...

Young adult fact sheet