- Hey everyone, welcome back to my channel.
I'm Hannah Witton, and sometimes here
I talk about my chronic illness, ulcerative colitis,
and about my surgeries last year,
and how I now live with a stoma.
And you may have seen from the title,
My Life Isn't Better With A Stoma,
and before we and get into the how's and they why's
I just wanted to make a few disclaimers.
Some disclaimers about
about that perhaps provocative title.
When it comes to having a stoma,
everybody's story is different,
and I also want to iterate the fact that
everyone's reaction like emotional, mental reaction
to their experiences is also going to be different.
Even if two people experiences are really similar,
how they deal with those could be
completely, like the opposite.
I personally have found so much amazing help
and support and comfort from the online ostomy community,
seriously, it has helped me so much.
Hearing other people's stories,
being able to talk to people online,
going through similar things, like,
not feeling like I'm alone, especially seeing
young women with stomas,
that has been so valuable to me.
So valuable to me in this process.
But there is one part of my experience
that I haven't really seen reflected anywhere,
and actually most of the stories that I hear
is like the opposite of what I'm experiencing.
So, I wanted to make this video
because I need to know that I'm not alone in this.
Because it genuinely does feel like that sometimes,
like, I'm not normal in how I'm responding to
these events that other people have also gone through.
And I also just wanna make a point of
showing the variety of experiences that there are
with having a stoma, with IBD, and chronic illness.
There is no straight path that takes you from
symptoms, to diagnosis, to treatment,
to then maybe surgery, and then
recovery, like it isn't following
in someone else's footsteps that has gone before you,
it is entirely yours.
That being said, I have found it really useful
hearing from people who have had their stoma
for five years, ten years, twenty years, whatever it is
and seeing how they're getting on,
like, that far down the line.
That to me is really useful.
But obviously their journeys to get there
and the mental health impact and things like that
can be so very
So, so, so, so.
The thing that I can't relate to.
I hear this being said a lot by people with stomas
about their own experiences, and then
I've also kind of had it said to me
in a way that people are projecting
that experience onto me and assuming that it's how I feel,
which can make me really uncomfortable
and feel a bit weird because
I don't know how to tell them that they're wrong.
It's complicated.
And that experience that I can't relate to is,
my life is so much better now
with a stoma than it was before.
Or, your life must be so much better now
than before you had your surgery.
And no.
No, no, my life was actually better before.
Which feels really weird to say out loud, publicly.
So the reason why a lot of people say
that their life is better with a stoma
is because their IBD, inflammatory bowel disease,
whether that's Crohn's or colitis,
before the surgery was so bad,
it was a daily struggle,
it was effecting their day to day life,
it was having a really negative impact on them
just actually living their life
with their abdominal pain, going to the toilet
multiple times a day, chronic fatigue
and many, many other symptoms.
All of these things were actually just
having a debilitating effect on their life
and so they elect to have surgery,
and having the stoma they feel like,
this is what I've heard people saying online,
is that it gives them their life back.
They suddenly feel like they can actually live their life
because they don't have this
debilitating chronic illness anymore.
But IBD affects everyone differently.
That's affects, not infects, because IBD is not contagious.
And my ulcerative colitis wasn't like that at all.
My UC would affect me in flare ups.
So it wasn't like this daily thing that I had to deal with
and I had to be careful about my diet
and things like that.
I would be totally fine, I would be healthy
for a couple of years or so, and then
I would get symptoms and those symptoms would last
for maybe a couple of months,
I may or may not have to have a hospital stay,
depending on how severe they were.
Most of the time, I would say they were
like moderate to severe flare ups,
but eventually the medication would kick in,
and I would go back into remission
for another couple of years.
Before my most recent flare up,
the one which resulted in me now having a stoma,
I had been in remission for ten years.
Ten beautiful long years between the age of 15 and 25,
where I had no symptoms whatsoever.
And I truly felt like a healthy person.
Yes, I had to take medication every day,
yes, regular hospital appointment and colonoscopies,
and things like that, but my day to day life
and living and standard of living, and all of that, healthy.
I was a healthy, chipper person.
So when I think was my life better before having a stoma,
I'm like yes, because I consider that ten year remission
as my life before my stoma.
Yes, having a stoma is obviously better
to how I ill I was in the weeks, months,
before I had my surgery.
That was horrendous, never again, no thank you.
And obviously so much better than being dead.
That wouldn't be great.
So when people say to me, oh your life must be
so much better now,
I kind of politely say like, yeah,
it's so much better than being ill,
but in my head I'm like, no.
No, no, no, my life was better before.
And, then I start to feel guilty, don't know why.
I get this guilt about not being grateful for my stoma
about not being grateful for my health,
or my life and things like that
because by like wishing away,
and thinking that my life was better before,
it's like I'm wishing I didn't have the stoma
and so wishing like the whole thing never happened,
but it did happen and it saved my life.
Yeah, sometime I feel guilty that I'm not
fully acknowledging that,
I don't know.
Even though, live I've said, most of the stories
that I've seen online from people with stomas,
is about electing to have this surgery
and then it drastically improving their life
'cause that's the thing, a lot of people
you can elect to have stoma surgery
if your condition is just too much
and you can't control it anymore.
You can elect to have your surgery which means
that you pick a day.
You get to pick a day and then you lead up to that day
and it means you can kind of emotionally
and mentally prepare for that,
and also if you elect, you've a higher chance
of being able to have key hole surgery
whereas with emergency surgery,
I had to have open surgery so my,
abdomen just got sliced open and recovering from that
obviously so much harder.
At least physically, but there are loads of other people
who, like me, getting a stoma was an emergency situation,
it was an emergency surgery, and it wasn't something that
they could prepare for, or knew was going to happen.
I've heard a couple of stories, like on the grapevine,
but not from anyone who's actually experienced it,
of going into surgery for the surgeons to do,
like a small procedure or just like have a look around
or something, and then they've woken up
and they have a stoma, but that like
wasn't what they were prepared
to come out of that surgery with.
And I'm like wow, how are they coping?
Hope they're doing okay.
There is lots out there of chronically ill,
unhealthy people, getting stoma, amazing, feeling great.
But I don't hear many of the like generally healthy people
suddenly having a stoma and then like
how are they dealing with that?
Because for ten years of my life,
I felt like a healthy person.
What is a healthy person?
Can you identify as healthy?
I mean right now I identify as unhealthy,
ostomate, disabled person, I don't know.
Chronically ill, and all of that.
What I'm trying to say, is that it's complicated.
There is a lot of extra stuff that I have to deal with,
and think about, and consider, and manage with a stoma.
A lot of extra medial supplies that I need
on me all the time.
But I feel like I've adjusted pretty well to this new life.
Overall I'm fine, I feel good, I'm doing great. Peachy.
I feel like I really know, I really know,
that my health is more important than
a big scar on my tummy and a bag of poo.
My health is so much more important
than what is on my exterior.
Here. You can't see.
But if I was given the choice
to be healthy without a stoma,
or be healthy with a stoma,
I would choose healthy without a stoma. Obviously.
However, as someone with a chronic illness,
healthy isn't a thing.
Like, it's not even achievable.
And so I feel like I have to, I guess adjust my thinking
of that ten year remission.
I think of myself as a healthy person during that ten years,
but I wasn't, and so I need to
start thinking of it like that,
like I still had ulcerative colitis,
and even if I didn't get super ill
and have surgery last year,
maybe it would have been five years from now,
maybe ten years from now.
And one of the things that me and my parents
actually talked about when I was in hospital
and we were like holy shit, this is really bad.
Am I going to have to have surgery or not?
One of the things that we thought about
if we didn't have surgery and waited it out
and maybe the medication worked, maybe it didn't,
but if it had worked, and I got healthy again,
or I got put into remission,
who knows when my next flare up would be.
Because UC, god damn, is very unpredictable.
Hence, the ten year remission and then they like,
we're gonna punch you in the gut
with life threatening flare up.
But yeah, I was genuinely thinking
having surgery right now is maybe my best option
because then at least I don't have to worry
about future flare ups.
So in some ways yes, maybe having a stoma is better
because it removes the unpredictability of the disease.
Like I said it's complicated. It's complicated.
I would love to hear your thoughts
on all of this in the comments
if you're someone with a chronic illness,
a stoma, another disability.
How do you deal with the guilt of
maybe not feeling grateful for certain treatment
or surgery that improved your condition,
things like that.
How do you grapple with this, and also
how do you deal with the like,
healthy, unhealthy, not healthy shenanigans?
Like if your condition is something that you can
go into remission for, do you still
consider yourself to have a chronic illness?
Or like, you know, if you like me,
have had a ten year remission or even longer,
do you still feel ill?
Or are you just like I'm a healthy person now.
And then bam.
I'm not saying that's going to happen to you, obviously.
I do not wish that upon you. Absolutely not.
It happened to me.
Which is why I wanted to make this video
about how my life isn't better with a stoma,
but in some ways it is.
Have I said that it's complicated enough?
Thank you so much for watching.
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and I'll see you in my next video. Bye.