Latest / Crohn's & Colitis Unfiltered / Colitis diagnosis, surgery and survival: Clare’s IBD turning point

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Colitis diagnosis, surgery and survival: Clare’s IBD turning point · Crohn's & Colitis Unfiltered

0:02
It is hard to keep hope alive, to be fair, because
0:04
you don't know what's going to happen next. You
0:06
don't know what tomorrow is going to be like.
0:08
Are you going to be loads worse and be mushed
0:10
in? Or can you slowly get better and then it's
0:13
time for the next one? Hope is a weird thing
0:16
because even if you're really well, you've still
0:20
got that thing in the back of your mind about
0:22
the next flare. And that always takes its toll
0:25
on you, always. So it's very difficult to have
0:27
hope, but I think everyone does with IBD. You
0:30
always hope that this is going to get cleared
0:33
up and then you might have a bit of remission.
0:35
And then you always know deep down there will
0:37
be another one, though. Welcome back to Colitis
0:40
Unfiltered. My name is Frank Tabering, and on
0:43
this podcast, we talk all things IBD. Today,
0:47
I have the pleasure of speaking with Claire,
0:49
who got diagnosed with indeterminate colitis
0:52
at age 18. in Nottingham, UK. Claire, welcome
0:56
to the show. Hello, thank you very much, Frank.
0:59
So everybody's IBD journey starts somewhere.
1:02
I would like for us to start going back to the
1:06
beginning. For you, could you tell us a little
1:09
bit about how the disease started to manifest,
1:13
first symptoms, what happened, the time that
1:17
you realized that something was wrong? It was
1:20
quite easy for me, actually, because I... Mine
1:23
started like a bang. It was severe straight away
1:26
and I had to go in hospital at those times. So
1:28
I know to the day what happened. I'd gone out
1:33
with some friends. The next day I was going to
1:36
London to visit my sister. So in my bag, I got
1:39
my purse that had quite a few bits in it, like
1:41
train tickets, a bit more money than normal.
1:43
I don't know why I took it out that night, but
1:45
anyway, I did. And halfway through the night,
1:47
when I went to the bar to look at my purse, the
1:50
whole purse had gone out my bag. And that was
1:53
my trigger. I still went to London. And while
1:56
I was in London, I started to feel unwell. I
1:59
had really bad diarrhea and just felt really
2:02
ill. And I managed to get myself back home eventually
2:04
after a few days with my sister. And I started
2:08
to get a real severe pain on my right side. And
2:11
I had to have the doctor out. He checked my tummy,
2:15
pressed down, released and various things. And
2:18
he thought I had appendicitis. So he said I had
2:22
to go to hospital. So I went to hospital. And
2:24
that's when they realized it wasn't appendicitis.
2:27
It was something else. During that first week,
2:30
like I say, I was quite young. I think anyway,
2:32
18 is quite young still to have anything like
2:34
this going on. They didn't really tell me much
2:37
at first. They did various tests. I had a sigmoidoscopy
2:41
where there's the camera that goes so far up.
2:44
Barium enema, a barium meal. I had various things
2:47
like that. constantly being sick as well and
2:52
running to the loo and he said I remember him
2:55
coming to the bed the junior doctor and saying
2:57
you will have to have an NG tube if you carry
3:01
on being sick so that panicked me at that age
3:04
I'd never been to hospital for anything else
3:06
and so eventually I kind of wasn't quite so sick
3:10
they put me on different tablets and stuff and
3:12
then I was on a drip And I was just generally
3:16
feeling so unwell. And after that, it was about
3:19
10 days in there, they got me on steroids and
3:21
things, and things started to improve. And it's
3:23
really weird. When you've been so ill and you
3:26
suddenly start to improve, it's quite a euphoric
3:28
feeling. You think, God, I feel better than I
3:31
ever have kind of feeling. And eventually they
3:33
said, you know, take these tablets and off you
3:36
go and we'll do a follow -up. The problem was,
3:39
what I didn't know, my parents didn't know as
3:41
well, I had to stay on these tablets. I thought
3:44
I was just taking that batch and that was it.
3:47
So I came off them and did another flare and
3:50
I was another 10 days in and all those kind of
3:52
things. So there was a lot of not knowing. There
3:55
wasn't much information coming from them. Eventually
3:58
he came to my bedside and said, look, you've
3:59
got inflammatory bowel disease. Not sure which
4:02
one you've got. Could be Crohn's or ulcerative
4:04
colitis. There's a thing called NACC, which at
4:08
the time was the National... Association of Crohn's
4:11
and Colitis is now Crohn's and Colitis UK but
4:14
back in the day it was called that nothing online
4:17
obviously back then in the late 80s early 90s
4:20
there was nothing really to no mobile phones
4:23
that you could google or anything like that so
4:25
very difficult in those early days of knowing
4:28
what on earth is going on here what's going to
4:30
happen to me yeah just generally quite scary
4:33
yeah absolutely and typically at least these
4:37
days You have a colonoscopy or some further testing
4:41
and you get a pretty clear diagnosis, right?
4:43
Well, you have colitis, you have pancolitis or
4:45
you have Crohn's disease. And what was it like
4:50
for you to then navigate life immediately after
4:54
this more or less detailed diagnosis and not
4:59
knowing what it really was that was going on
5:03
inside you besides the word? inflammatory bowel
5:06
disease, but we're not sure which one. How did
5:08
you navigate this uncertainty? Very difficult
5:12
at that age because I was going out with friends
5:15
and, you know, it's that kind of age where you're
5:17
going out to the weekends, having fun, blah,
5:19
blah, blah, having a drink. Obviously, every
5:21
time I went out, I felt unwell. Even when they
5:24
reduced me on the steroids, if I got to a certain
5:26
point on the steroids, it would start, the symptoms
5:29
would come back, so then I'd have to grow back
5:31
up. It was just awful because... I did have a
5:34
close friend at the time and she knew what was
5:36
going on and everything, but I don't think she
5:38
quite understood quite how horrible it was to
5:40
live with and why I felt so unwell and couldn't
5:43
go out and things like that. It should be brilliant,
5:45
don't get me wrong, but no one knows until you've
5:47
had it. It's pretty common that steroids are
5:51
referred to as a blessing and a curse, right?
5:54
Because the blessing is obvious. It can pull
5:57
you out of your symptoms pretty rapidly. But
6:00
there's a lot of side effects. They're only meant
6:02
to be taken short term. So what was that like
6:05
for you? Did you experience a lot of side effects
6:07
to the steroids? And how long were you on them?
6:11
Well, because I'd had these flare -ups. The very
6:13
first one, I was probably on them for quite a
6:16
few days in the hospital. Then I came out and
6:18
flared again another 10 days. There was another
6:20
load of intravenous steroids and then onto the
6:23
oral. And then that happened for a little while
6:25
until they kind of balanced me out. I got the
6:29
moon face. I was starvingly hungry. I had everything
6:32
in sight and wide awake at night. It was one
6:35
of those kind of things. But yeah, the moon face,
6:38
yeah. I mean, it does go once you come off them,
6:41
but it's unexpected, really. It's very weird.
6:45
It really is. It really is. So you're on that
6:49
for a while. How did your IBD journey continue
6:52
from there on? Take us a little bit through the
6:55
next. weeks months even years because ultimately
6:58
what i want to get to is to the point in your
7:02
life where you start to feel better it should
7:06
take a little while to feel fully better because
7:09
i always had a flare at least once or twice a
7:12
year that was enough to go on steroids again
7:14
they put me on old salazine which was one of
7:17
the like salazine kind of family which seemed
7:21
to help then i i got married. I was still, I
7:25
got married. I had children and had a flesh pretty
7:29
much just before I was giving birth. So, but
7:31
yeah, there was lots of difficult times for me
7:35
because I ended up being in hospital when my
7:37
daughter was only two and my son was four. So,
7:40
you know, they'd come and visit me and it was
7:42
horrible because they'd have to go. And it was,
7:44
it was just awful at that, that sort of young
7:46
age, teens to twenties kind of thing. regularly
7:51
having flares and regularly feeling really poorly
7:53
but generally improved with steroids again and
7:57
it was one of those I was on and off steroids
7:59
for many years probably because back then they
8:01
didn't really have the biologics weren't around
8:04
originally and so it was all those kind of things
8:07
and she tried me on nicotine patches that was
8:11
one of the things she thought would work and
8:13
I had some really obscure things like that and
8:16
then eventually I they gave me they put me on
8:18
azathioprine which I did feel quite unwell at
8:22
first sickly but then I got into it and I was
8:25
absolutely well for 14 years after that with
8:29
the acethypin. I had the odd little funny thing
8:32
but nothing like I was and it really kept me
8:35
on an even keel so as soon as I came off them
8:39
a month or two later I was back in a flare and
8:42
it was so horrible because I thought I've been
8:44
all this time and now I'm back in this flare
8:47
and it was horrible. you know, having accidents
8:49
at work and just generally horrible. And then
8:53
I took time off. It was in December 2015. This
8:57
was by now about 10, 11 years ago. And that flare
9:03
grumbled along and I started to get worse and
9:06
worse. I felt a bit bedbound -ish by the time
9:10
I'd done. I'd got anal skin tags that were swollen.
9:16
that they appeared suddenly, and apparently that's
9:18
a Croden's thing, which I didn't know. I was
9:21
very well nourished. The gastroenterologist was
9:24
okay, but I think they kind of left me more than
9:28
they did back in the day, whether it's so busy
9:30
with the NHS, and I kind of almost disbelieved
9:34
a little bit, if you like, as to how bad I actually
9:37
felt. The colonoscopies did show severe flare
9:41
with ulcers, but it was just left -sided right
9:44
up to the... under your rib it was that kind
9:46
of but it didn't go all the way around my bowel
9:48
but it never cleared and it became worse and
9:51
worse so eventually after they didn't really
9:55
listen to me particularly my husband took me
9:57
to A &E because I started to not be able to wee
10:00
and I know that can be a sign of sepsis so off
10:03
we went to the hospital I got an award and the
10:07
next minute the colorectal surgeon came to see
10:11
me and he said Claire you are so unwell that
10:13
bowel's got to come out how about tomorrow and
10:15
that was so scary just to suddenly bang there
10:18
you go it's coming out tomorrow I mean I knew
10:19
all about stomas and ileostomies because obviously
10:22
when you've got this disease you do come across
10:24
it a bit in literature and stuff the actual when
10:29
they're told you've actually got to have one
10:30
it's absolutely terrifying and um but I was so
10:34
ill I thought I've got to do it Anyway, he said,
10:37
we'll see what this CT is like. And if it's bad,
10:40
we'll take you down Sunday morning. And Sunday
10:44
morning, I went down. And because I'd been so
10:46
unwell, he said, we're going to have to do an
10:49
open surgery. We won't remove the rectum just
10:52
yet because you're not going to heal very well
10:55
because you're unwell. We'll do that at a later
10:56
date. So that's what happened. I went down for
10:59
surgery. I was on the high dependency unit for
11:01
four days, but she said I would be because they
11:03
wanted to make sure I was well looked after.
11:06
And, yeah, just recovered from there. But I was
11:09
in hospital for nearly three months because I
11:11
had a rectal stump blowout. So the stitches didn't
11:15
hold in rectum. It caused pelvic sepsis. So I'd
11:17
have a catheter put up there. And it wasn't fun.
11:20
I'd have a nasogastric feeding tube. And there
11:23
was a lot of unwellness there, mentally as well.
11:27
I did go into a bit of a depression in the hospital,
11:30
thinking I'd never get out again. And then from
11:33
there to here. healed up they removed the rectum
11:37
and now i'm left with fistulas down that end
11:39
but very well elsewhere so the actual stoma is
11:43
great uh it's just the down below bits that aren't
11:47
great now but i think that's that happened because
11:50
i was so unwell when i had the surgery i think
11:53
it's kind of a knock -on effect from all that
11:55
yeah well it's a lot to dissect there so Yeah,
11:59
it's quite a story. It's quite a story indeed,
12:02
yeah. And I want to jump back in time shortly,
12:05
but since we're on the topic of surgery, I think
12:07
you said something there that stuck with me that,
12:10
you know, you basically had, what, less than
12:12
24 hours between a surgeon telling you, hey,
12:15
we need to take out your bowels. How about tomorrow?
12:18
You mentioned that that was a very scary moment.
12:22
So you only had very limited time to process
12:25
this. first of all, the fear, and then sort of
12:31
the reality that set in that, hey, in 12 hours,
12:34
I'll be in surgery. How did you deal with that?
12:37
How did you prepare to accept what's going to
12:39
happen to you in that very short amount of time?
12:42
It was difficult. The stoma nurse came to visit
12:45
me because at least I had time for her to cite
12:48
the stoma. So they put a little dot as to where
12:50
would be best for me. And I chatted to her a
12:53
little bit about it. And there was a lady next
12:54
to me. in the bed who'd had one so you know I
12:57
mean I'd got a bit there and because I was quite
12:59
unwell still I wasn't although I was fearing
13:02
it I also wanted to have it as well at the same
13:04
time I thought maybe it'll make me really well
13:07
and I didn't imagine the problems I'd have during
13:10
that short time after but you know in my mind
13:14
I thought maybe just maybe I won't ever have
13:17
to deal with this lot again and my son said to
13:18
me you know it's a diaper and all those meds
13:21
you'll never have to be on those you know that
13:23
kind of heavy duty stuff the steroids and that
13:26
it was very difficult I was very frightened and
13:29
when they took me down I remember them they're
13:32
going to like the pre -theater room where they
13:34
do the anesthetic and I just said to him I'm
13:36
really really scared can you give me something
13:38
and then he said yeah of course and then give
13:40
me something and I don't remember anything after
13:42
that luckily I just don't I couldn't go through
13:45
with going through into the theater and all that
13:48
business it was very scary sure sure so that
13:53
that was sort of the probably one of the worst
13:56
moments or one of the worst parts of your IBD
13:58
journey today how are you feeling are you still
14:03
being are you still on medication um are you
14:07
and this is one of the things right because a
14:09
lot of people there's this misconception that
14:11
you know you have surgery and all of a sudden
14:13
your IBD is cured how is that for you How are
14:16
you feeling today? I mean, I'm well in the sense
14:20
that I don't have these flare -ups at all. I
14:22
obviously don't go running to a toilet because
14:24
I'm not able to. It just goes in the bag. So,
14:26
and I put weight, quite a bit more weight on
14:29
than I was. I was very skinny back then because
14:31
obviously you're unwell and things like that.
14:33
And the weight just never went on. Now it does.
14:36
It piles on because you're so well. But because,
14:39
like you say, I can't draw a line under it because
14:43
I'm now... got these fistulas um perianal fish
14:47
you know crohn's disease or whatever it is they
14:49
think it is perianal crohn's it's never gone
14:52
medication wise i'm not really on anything bar
14:57
the old painkiller for that but yeah it's not
15:00
ended the story i can't draw a line under it
15:03
i'm not fully well in that respect because it's
15:05
it's all connected to me it's all connected to
15:07
what happened so i've still still got that to
15:10
deal with you were well for About 14 years, you
15:15
mentioned. Then you had a big setback, surgery.
15:19
Today, do you feel that you've gotten your life
15:23
back? If it was just the stoma surgery, I would
15:27
say absolutely. I think they should consider
15:30
that more as an option rather than a last resort.
15:34
That's how I feel about it. I think some people
15:36
would hugely benefit from it. I know they're
15:38
scared and everything, but their life will be
15:41
changed. for the good mostly if it was just the
15:45
stoma i would say yes my life is so much better
15:48
and it is it's i can still say it is but i still
15:53
have these other issues where i'm leaking and
15:55
doing from another part now so that that bit
15:59
i can't quite get over yet because it's it's
16:04
since i had the surgery so it's been 10 years
16:06
now and i've had many surgeries on that part
16:09
I've had a flap surgery they've took muscle out
16:11
my thigh and so I've had some big surgeries down
16:14
there which hasn't cured it so I can't say I'm
16:18
fully well but that is a complication not really
16:22
what most people would get after a stoma surgery
16:25
if I wished I'd had it a few months earlier than
16:29
I did and I think I'd have recovered quicker
16:32
and better so if you focus on the more or less
16:36
positive then. You said that part of your IBD
16:39
journey, you definitely feel better. For people
16:42
who are scared of surgery, for people who think
16:44
that this is the most horrifying thing that can
16:47
happen to them, even though it might make them
16:49
feel better, what's life like with a stoma? When
16:52
I first had it, when I was in the hospital, when
16:56
the stoma nurse first came and said, well, we're
16:58
going to change your stoma bag, I said, I don't
17:02
think I can look at it. I'm not ready for it
17:04
yet. You know what I mean? And so she did it
17:06
for me and I didn't look at it. The second time,
17:09
she said, let's have your husband in and we'll
17:11
try and see if we can do it together and blah,
17:13
blah. And I had a quick look at it. It was a
17:15
bit grim. It's a weird thing to have there. But
17:19
you just get used to it. It's part of, you know,
17:22
it's so, so weird. You get used to it. The bag's
17:25
nothing. You have the odd bit of like the odd
17:28
leak and blah, blah, blah. But in general, you
17:31
can't feel it. You don't know it's there unless
17:34
it's filling up and you need to empty the bag.
17:36
But you can't feel it. There's no nerve endings
17:38
in it. So you could actually feel like you're
17:41
100 % better. But it is a weird thing to see
17:44
for the first time. Yeah, it takes a little bit
17:47
of getting used to and then it becomes part of
17:50
you. It becomes part of your life as well. Now,
17:55
you know, you were not well. then you went on
18:00
the azathiopine, you were well. And one thing
18:03
with IBD patients is that, you know, once they
18:05
have the chance to either go into remission or
18:08
they get a chance to experience a period of feeling
18:11
well, there's a certain sense of fear that creeps
18:14
in about, hey, when is the next flare going to
18:16
show up? Or will I get worse again? Will I get
18:20
so worse that I might have to do surgery at some
18:22
point? your experience is interesting because
18:26
again you were really unwell then you got better
18:28
and then sort of it really hit you hard years
18:30
after your diagnosis how did you keep hope alive
18:35
when it just felt that wow you my body really
18:40
is working against me now gosh that's a difficult
18:43
one um It is hard to keep hope alive, to be fair,
18:48
because you don't know what's going to happen
18:49
next. You don't know what tomorrow is going to
18:51
be like. Are you going to be loads worse and
18:53
be rushed in? Or can you slowly get better and
18:56
then it's time for the next one? Hope is a weird
18:59
thing because it's a bit, you feel more, I don't
19:05
want to say depressed, but even if you're really
19:08
well, you've still got that thing in the back
19:10
of your mind about the next flare. And that always
19:14
takes its toll on you, always. So it's very difficult
19:16
to have hope. But I think everyone does with
19:19
IBD. You always hope that this is going to get
19:22
cleared up and then you might have a bit of remission.
19:24
And then you always know deep down there will
19:27
be another one, though. I think, yeah, I always
19:30
knew I would have another flare. Even after those
19:32
14 years, I never really thought they were gone.
19:36
Because I'd had so many previously, I thought,
19:38
there's no way it's gone fully. I just didn't
19:41
believe it. Absolutely. No, I can see that that's
19:44
a way of thinking that you don't really have
19:47
a choice but to submit yourself to because it's
19:52
a traumatic event, right? Or a series of traumatic
19:54
events. But before I want to ask you a couple
19:58
of questions about that part, I want to go back
20:00
in time. You were diagnosed at a very young age.
20:03
And one might argue it was a crucial or is a
20:06
crucial age in a human being's life. What was
20:11
that like for you to not only be diagnosed with,
20:14
at that point, indeterminate colitis, but to
20:18
also navigate those crucial years, this end of
20:22
the teenage years, beginning of your adulthood?
20:26
What was that like for you? I started with anxiety
20:29
issues and panic attacks and things like that.
20:32
And I think it was down to that. in case I had
20:35
a flare or felt unwell when I was out I used
20:37
to end up carrying I used to feel sick and actually
20:40
be sick if I had this anxiety attack so I'd have
20:43
to carry like a little bag with me in case I
20:46
felt sick and it did actually cause me a few
20:50
issues I'd you know plan to go out be quite excited
20:53
about it when it came I'd start feeling really
20:56
unwell and sometimes I'd end up not being able
20:58
to go sometimes I'd go and then be all right
21:00
whilst I was there I always had this anxiety
21:02
about going out and I do think it was probably
21:06
down to the ulcerative colitis at that age. When
21:09
I met my husband, I told him he was absolutely
21:12
fine and he's been fabulous all the way through.
21:15
So I was very lucky in that respect because obviously
21:18
he's put enemas in me. I mean, you've probably
21:21
had them before where you've had the foam enemas
21:24
up there. He's helped me with that. Yeah, just
21:29
generally all those horrible things. So that's
21:32
one thing. But then you enter into motherhood.
21:37
That's a whole different ballgame because when
21:39
we're flaring, when we're sick, we have the tendency
21:42
to want to be alone, to isolate ourselves, potentially
21:44
to suffer in silence, right? To just deal with
21:47
our pain ourselves. But when you have kids, you
21:51
don't necessarily have that luxury. So tell me
21:53
how you navigate in motherhood. I was very, very
21:57
lucky that my mum and my mother -in -law were
22:00
either semi -retired or not working anymore.
22:05
And they were just brilliant. If ever I was in
22:08
a flare -up, because my husband would obviously
22:09
still be working, so he couldn't necessarily
22:10
have them and things like that when they were
22:12
very young. And they just took over completely
22:15
for me. So I didn't really have any problems.
22:19
I was so, so lucky. And I know not everybody
22:21
has that at all. They may have no family. And
22:24
I cannot imagine how will you feel, do you want
22:28
to flare how you could look after kids? I just
22:31
don't know how you could do it. I mean, people
22:32
do. I know they do. And they just push through
22:35
it and take them to nursery and take them to
22:38
school. But I was lucky enough to have a family
22:42
that could rally around at those important times.
22:46
Yeah, that's great. Now, how do you explain kids
22:50
that mommy is very ill? When my daughter came,
22:54
well, my son, he wasn't so bad. He was a bit
22:57
older and he was fine with granny and nana and
23:00
things like that, you know, mostly. But my daughter
23:03
was a bit younger and I remember having to tell
23:06
her, you know, I'm just going to be in either
23:08
hospital or I'm well up in bed, whichever it
23:10
might be, you know, because I've got a poorly
23:12
tummy and I'm not very well. And just generally
23:16
telling them those kind of things. They took
23:17
it fairly well, to be fair. I mean, a lot of
23:20
time they'd come running up. to talk to me if
23:22
I was in bed but that was fair enough you know
23:24
I can't I'd want to see him generally but I just
23:27
couldn't play with them or do things like that
23:29
so in general they were fine and I found it not
23:34
too bad to explain to them they seemed to understand
23:37
vaguely mummy was poorly and when I was in hospital
23:40
mummy's poorly but I'll be home soon you know
23:42
a few days I'll be out that kind of thing because
23:45
they could see me they'd come and visit me when
23:47
I wasn't in my worst state obviously they could
23:49
come and see me And know that I was all right
23:52
and fine and would be home soon. You share your
23:57
story and part of your story online as well.
24:00
I've read some of your stuff. And on one of your
24:03
blog posts, you, and I quote, wrote, life does
24:08
not have to end after a traumatic event. It just
24:11
changes. What do you mean by that? Explain the
24:16
change. Because you're never going to be. I mean,
24:19
this is the surgery, I guess is what you're talking
24:22
about, maybe, yeah. You're never going to be
24:24
the same as you were before, I don't think, because
24:30
mentally you had a really challenging traumatic
24:34
experience, maybe had to have counselling, which
24:36
I did have to have a bit, even was diagnosed
24:39
with some amount of post -traumatic stress at
24:44
the time. What helped me and what I think got
24:49
me back to being more or less me was doing my
24:53
blog and joining the local ileostomy association
24:57
that we have here in the UK and doing things
24:59
like that. Because I think talking about it absolutely
25:02
helps get it all out there. It was therapeutic
25:06
to me. My husband sometimes said, oh, don't put,
25:09
you know, you don't have to go too far with what
25:12
you put. I said, yeah, but this is the truth.
25:13
This is, you know, this is how it was and this
25:17
is how it is. So, yeah, I mean, sometimes I think
25:20
my blog can go the other way and may scare a
25:23
few people, maybe. But on the other hand, people
25:28
may want to know. And so I've had quite a lot
25:32
of good. things from it i've not really had any
25:35
negative uh things from my blog but i that that
25:39
is what helped me get back to almost being me
25:41
like say almost because my body has changed i've
25:46
always got this bag stuck on me now and i'm never
25:48
ever gonna get unless some miraculous you know
25:52
new medication or something comes along new surgical
25:55
skills it'll always be there so i am different
25:59
in that respect You mentioned your body changing.
26:02
I think when you look at social media today,
26:04
especially if you look deeper into IBD communities
26:09
that are online, you see a global, I don't want
26:14
to, maybe, yeah, maybe I could call it an awakening
26:16
of some sorts of people really opening up about
26:20
life with IBD, about life with an ostomy. You
26:23
see so many women posting photos in bikinis with
26:27
their ostomies and not just to pose, but to really
26:31
show that it's perfectly okay. For you, how did
26:37
IBD impact your body image? I was very thin because
26:44
I was unwell quite a bit. So I don't think I
26:47
would have worn a bikini. I was so thin. Now
26:52
having a stoma, I do wear a bikini. It's so weird.
26:57
And yet I'm much older. I've obviously got parts
26:59
of my body I don't like anymore because I'm getting
27:01
older. But I will still wear the bikini. There
27:04
are times where I might wear one little cover
27:07
-up. Depending on how I feel on the day, I still
27:09
get the odd bit people are staring at me kind
27:12
of days. And other days, I don't care. You know,
27:15
they can ask me or not. So I still get that a
27:18
bit. I like to see it on social media. It is
27:21
helping the stigma of having stoma and IBD. It's
27:27
helping people understand what IBD is and how
27:31
serious it can be by having these really seriously
27:35
major surgeries that you have that will change
27:38
your life completely. Absolutely. It's part of
27:42
making the invisible visible, I'd say. And yeah.
27:49
So as an IBD veteran, we've talked a little bit
27:53
about introspection. We talked about the physical
27:55
aspect. As an IBD veteran, how has IBD changed
28:01
you as a person? It's made me a bit more caring
28:05
of others, weirdly. Other people's ailments or,
28:09
you know, disabilities. Because I know. what
28:13
it's like to be looked at maybe or go to a disabled
28:17
loo and be looked at thinking you look alright
28:19
but knowing deep down I'm not. So I don't question
28:23
it as much and I feel for other people's journeys
28:27
of whatever that may be and I do think I'm a
28:31
little bit more caring person and want to help
28:33
and want to talk to people about it and if they
28:35
can come to me I'm happy to talk about it and
28:38
that's what it's made me like. That's a very
28:42
good point. And this actually ties into my next
28:45
question is, like, we live in an age where you
28:51
can very easily find out a lot about IBD in a
28:54
matter of minutes. But I do feel based on what
28:57
I see online, on forums, questions that people
29:01
ask, maybe they've done their research, maybe
29:04
not. Maybe the research that they've done is
29:06
not reassuring them. They still ask those questions.
29:09
A lot of people don't know how to handle this.
29:11
They don't know how to deal with this. And one
29:12
of the things that I keep seeing is that people
29:14
who are being treated fine, but then maybe the
29:18
treatments fail or they just can't seem to escape
29:21
repetitive flaring, right? Or people that face
29:25
surgery. I would be interested in hearing from
29:28
you what kind of advice or message you have for
29:32
people who are not out of the woods, who are
29:36
not really certain about where their IBD, journey
29:40
is headed. I would say because there's so many
29:46
new things out nowadays and also my daughter's
29:50
just been diagnosed with Crohn's and they're
29:55
going to put her straight onto biologics. They
29:58
go we don't do any messing, no steroids nowadays,
30:01
it's straight on that. So there are a lot more
30:03
things that you can try and a lot more different
30:05
biologics even. There will be something. Like
30:09
I say, I flared for a long time until I had azathioprine,
30:12
which helped me and took me out of my flare.
30:15
If you cannot get out of a flare and they've
30:18
tried every opportunity and everything they can,
30:21
do not be frightened of the surgery. Get yourself
30:24
fit and well for that surgery as best you can
30:26
and talk to people who've had it and who aren't
30:30
the ones who kind of say, you know, you get them
30:33
online that are a bit frightening you and things
30:35
like that. go into the ileostomy associations,
30:38
any of these kind of places, and get the real,
30:41
and they'll show you all the leaflets about what
30:44
to do to make yourself well enough, what things
30:47
to eat, what things to, you know, all these kind
30:48
of things. I would prepare yourself for surgery
30:52
away in future, just in case it is something,
30:54
just so you know a bit about it, but know that
30:58
there are other things and something may suddenly
31:01
get you out of that flare. and it could be for
31:04
years like me it could be i know nobody knows
31:08
and all this kind of thing but once we once you're
31:10
on the thing that that's working it tends to
31:12
work for a while now if you could go back in
31:17
time and even though the day of the diagnosis
31:21
was sort of a little bit muddy, right? Because
31:24
we always go back to this indeterminate colitis.
31:26
So it was not really clear cut. But if you could
31:29
go back in time and you could face the 18 year
31:33
old you, what would you tell that person? I would
31:39
tell that person to advocate for yourself. Like
31:43
I say, I had a few times when the gastroenterologist
31:45
wasn't really listening. We had to push for certain
31:48
things, always push and get what. Because nowadays
31:51
they like you to not treat yourself, but know
31:54
when things are happening and know to go and
31:57
ask for help and maybe even start on certain
32:00
things yourself because you know what's going
32:01
to be happening. Make sure you get somebody,
32:04
a gastroenterologist or GP, who you can talk
32:08
to, who understands you and knows the sort of
32:13
things that you need. So make sure you push for
32:15
yourself always. That's one piece of advice that
32:19
I use a lot. And I think it's one of those things
32:23
that a lot of people actually are scared of standing
32:27
up for themselves. I am still shocked to see
32:32
that there are so many gastroenterologists or
32:35
doctors who... are not proactive clearly or who
32:40
do not inform their patients about ibd enough
32:43
don't make them feel comfortable enough or don't
32:47
do their part to build trust right in their patients
32:50
and i really do believe and and again this is
32:52
not limited to just ibd but with ibd specifically
32:55
it's such a it's such an almost at first embarrassing
33:00
disease right until you get to a point where
33:02
you're accepting what your body is doing to your
33:05
to itself but i always say the best thing you
33:08
can do for yourself is not just raise awareness
33:11
or advocacy but like you said advocate for yourself
33:14
and if you're specialist if your doctor is not
33:17
listening to you do everything in your power
33:19
to find someone else to find somebody who will
33:22
because you don't have time to lose you just
33:26
you just don't right so this is really resonating
33:29
with me uh as well i'm and um i'm a perfect example
33:33
because i've had So I lived in the US with my
33:37
disease. Now I'm living in Europe with IBD. But
33:40
in both cases, I found somebody that I trusted.
33:43
And when they told me that they would move hospitals
33:46
or move clinics, my first question was, can I
33:48
come with you? And so you have to be very, very
33:53
selfish. And you don't have to be afraid that
33:55
you're stepping on anybody's toes. You just do
33:57
what's best for you. And if that means just leaving
34:00
with your doctor, then do it. You know, that's
34:02
all I can say. I've had a similar experience
34:04
recently because when my fishing was all started
34:07
under Nottingham, I mean, they were great, but
34:09
they came to a point where they didn't really
34:11
know what to do next, or at least were giving
34:14
me options that were very scary at the time.
34:17
And I asked, there's a hospital in London called
34:19
St Mark's. I don't know if you've ever heard
34:21
of it. It's an actual bowel hospital. And I've
34:24
now been referred to them. So I'm under them.
34:27
So yes, I travel down there. I'm with the best
34:29
of the best. So do you know what I mean? It's
34:31
not going to happen there. It's not going to
34:32
happen anywhere. And so my husband used to say,
34:35
let's not be done. You know, we've got to wherever's
34:39
the best place. Absolutely. Absolutely. So Claire,
34:42
thank you so much for taking the time to speak
34:45
with me today. I definitely wish you all the
34:49
best. Hope that you're... IBD stays calmer and
34:55
that the complications as well is something that
34:57
you'll be able to keep at bay. And the same goes
35:02
for your daughter. So I really wish all the best
35:04
for her in her fresh IBD journey. And thank you
35:08
so much for being with us today. Thank you. Thank
35:10
you. That's it for today's episode of Colitis
35:14
Unfiltered. I'm Frank Tabering. And if this hit
35:17
home or hit your gut, do us a favor. Subscribe
35:20
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35:27
and Reddit. We'll see you soon for more inspiring
35:30
stories from the bathroom floor.