One Year Post-Surgery Living with a Stoma | Hannah Witton

– Hey everyone, so this
is the first actual video that I’m filming in 2019
so hi, happy new year. This is a very special
video because today, the day that this video
is getting uploaded is one year since I
had my total colectomy. Which is the surgery that removed my colon and gave me a stoma. So it is Mona’s one year birthday, one birthday, anniversary? I’m not entirely sure what to call it. I’m actually having some
friends over this evening to celebrate because I’m extra like that. Just with everything that
has happened in the last year I feel like I want to mark this
occasion, I want to reflect, and I also kind of just want to celebrate. For me putting a positive
spin on things really helps rather then being like,
oh a year ago today I had life changing surgery,
and was in loads of pain, and really ill and it was horrendous. More like a year ago
today my life changed, I got my health back and proved to myself that I’m much stronger
then I thought I was. So I wanted to talk about
what my life is like now one year on from having the surgery, one year with a stoma, how I manage it. And I also asked for questions
on Twitter and Instagram, so I’m gonna answer some of those as well. So I had my surgery on
the 14th January 2018 and before that I’d been in hospital for two and a half weeks
with a severe flare up of my ulcerative colitis,
just not feeling great at all. That is an understatement,
it was horrendous. And then after my surgery
I was in a lot of pain because of being cut
open, and I was very weak, and I still had to ween myself
back onto food and stuff, but I didn’t feel anymore. Having that surgery was such a relief, I was just like, get this
diseased thing out of me. So the first thing I’ll say is I think I’ve adjusted really well. I adjusted quite quickly, I got the hang of how to empty the bag,
and how to change the bag, and I’ve never been
super grossed out by it. So there wasn’t this massive hurdle that I had to overcome
to look at it, touch it, properly clean it and things like that. One of the biggest struggles this year is having my care in loads
of different hospitals, and just being completely
all over the place. There’s been no one person overseeing everything that’s happening
to me which isn’t ideal. Just before Christmas I
had my first appointment with my new consultant,
at my new hospital, and I also met the stoma nurses there. So I feel pretty good, I feel
like my care is under control and all in one centralised place. I managed to get all
of my discharge letters from all the different hospitals, and get them all scanned
and send them off. So everyone has got the pieces
of paper that they need. I think my organisational
nature lends itself very well to being a patient of the
NHS because you kind of need to do a lot of the work yourself. So my health now, the
stoma who I’ve named Mona has been behaving very
well, she’s pretty chill. I have had one leak in
the whole year at home. I had many leaks in hospital but I think that was because of the
stoma changing size, and also they didn’t
have the bag that fit me. But leaks in hospital
are fine, I had one leak at home here very shortly
after moving house on our new mattress, and
very devastated by that. What happened was in the
night I was just farting, farting, farting and the
bag filled up with air and it got to the point
where it was so full with air that the pressure of it,
it only had one way to go and that air pressure peeled the seal off, and that seal is, it is strong, so my farts were just
even stronger clearly. So it pushed the seal
off and then leaking. I still have to get up in
the middle of the night to go empty my bag but
what I’ve been trying to do is set my alarm later and later and later. So I used to set my alarm for about 3:30, and now I set it for
four, five AM, in the hope that I’ll wake up naturally
in the middle of the night to go empty the bag but
just in case I don’t there is a later alarm to wake me up to make sure I go empty it
so we don’t get any leaks. That is one of the big
things that annoys me. I didn’t get any sleep
whilst I was in hospital because they’re constantly waking you up to do your observations in
the middle of the night. And now with having to wake
up in the middle of the night, every night to go empty
the bag I have not had a full nights sleep in a year, and when I say that out
loud I kind of want to cry because I love sleep and
I really value getting eight, nine hours sleep,
and that is kind of what I get total but
it’s always broken up. It takes me three minutes
to go to the toilet, empty the stoma bag, get back into bed and then most of the time
I just fall back asleep straight away so I’m
never awake for very long but I guess I am a bit concerned about if that makes me more tired. I have to stay in bed for much longer because I’m just exhausted. I punish myself for
being lazy but I’m like, is it because I have to get up
in the night to empty my bag or am I actually lazy? I don’t know which one it is. Maybe this is internalised ableism, maybe it’s probably that. (coughs) I don’t want to be lazy, I want to be able to
get up in the mornings, (sighs) but I also want to sleep. So another thing that I mentioned in one of my previous
videos about having a stoma was I was getting rectal mucus. Now this is gonna get graphic
guys, so you’re welcome. So basically I still have my rectum, it’s completely sealed off
and your rectum produces a mucus to help lubricate poos coming out. But obviously I don’t do that anymore, but my rectum doesn’t
know that so it still produces this mucus and
every so often I’ll just be sat on the toilet
having a wee or whatever and then mucus will kind of drop out. I don’t really have any control over that, I can’t push it out or anything, it just kind of dribbles out. It’s only ever on the
toilet, it’s not like I’m just shitting myself mucus constantly. But one of the other
things that has happened is I’ve had some inflammation in my rectum which means that there is blood and pain. And this pain, it’s really
difficult to describe because it’s very different
from the abdominal pain that I would get with ulcerative colitis but basically I get
the phantom poo feeling of needing to do a poo
and it’s really urgent, and it’s really painful but
it’s not painful in my abdomen because that’s not where
the inflammation is, it’s painful in my butt hole. It’s really, it’s so weird,
and then I go to the toilet and I’ll pass mucus but
it will have blood in it. Sometimes it feels like the entire rectum that is inside me is gonna go
inside out, and just fall out. (laughs) I don’t think that’s possible. When I was having the colitis pains I would sit on the toilet
and I’d be deep breathing and I’d be focusing, and I’d
just be quiet and silent, and trying to get through it. Whereas with these pains because
of that pushing sensation it feels like you’re trying
to push a watermelon out but actually it’s just
some dribbles of mucus. But even though I don’t
think it’s as painful as the colitis pains I
can’t do it silently. When I’m pushing I literally, my body, I scream, I don’t want
to scream right now for you because that would be a bit
weird but I can’t help it. My body is just yelling, and I can’t help this noise coming out, and so far whenever I’ve had these
pains I’ve been at home and I’ve been in private
but I am very terrified, and very nervous about it
ever happening in public because I do not think I would
be able to control myself because the pain and
that pushing sensation, it’s like, I don’t know
I’ve never had a baby but maybe it’s like
labour, you just scream. But this happens very
rarely, although I think, it kind of has been getting
worse and I’ve been using these suppositories, which are just like little pellet things and I just put them up my bum every night and that for the most part
clears it, and it’s pretty good but every so often I just
get it and I’m literally sat on the toilet for
about 30 minutes screaming. La la la la la. I kind of want to talk
about a positive thing now. A positive thing would be that I am now very involved in the stoma and chron’s and colitis online community. I’ve met lots of really amazing people and that has been so helpful to kind of have other people to talk
to about these things, and kind of laugh and joke about some of the weird stuff that we do. Like I just love watching her poo. I can get so mesmerised
by just sitting there and being just like,
ooh, as poo comes out. It’s so fascinating. And I love that feeling of,
feeling it against my hand. I’m just like, oh yep, she’s been active. I always wonder that if
I ever get the reversal, so I don’t have a stoma
anymore whether I’ll miss that, and whether I’ll put my hand on my tummy expecting to feel something
but nothing will be there. I don’t know, I want to be
able to feel it against my hand but I also want to be able to watch what it is that I’m feeling. (laughs) This is a really niche problem. Um, um, um. I have talked for so long so
I’m gonna do some questions now there were a lot of questions
but I’m just gonna do a few of things that I don’t think I’ve covered. One of the main ones is am I
going to have a permanent stoma or will I get the reversal
surgery to create a j-pouch? Basically because I still have my rectum my stoma isn’t permanent
and there is the option for me to have a further
surgery to create a new bowel out of my small intestine
and that would be a j-pouch. But then there are other
things that come along with having a j-pouch, my stool
would still be really loose, and I would be going
four to six times a day. So I’d basically be emptying it out as often as I am with a stoma bag, but instead it would be coming
out of my butt hole again. And then the other option
is having another surgery to remove my rectum and then
having a permanent stoma because there’s an
increased risk of cancer that you can get the
longer you have your rectum just hanging out there. So I will have surgery again
at some point in the future I just don’t know when
and I want to put it off for as long as possible because
I don’t know what I want. If my rectal bleeding
and the pain continues it might be a case of
I don’t have a choice and I just have to have the rectum removed if the inflammation gets worse. On a day to day level
having a stoma, fine. Everyday, I’m like,
I’m good but the moment I think of it as forever,
the moment the concept of having a stoma forever comes into it I want to break down and
cry, and I don’t want that. So yeah, don’t know what
else to say about that. So, so, so, so, so how
does showering work? So I tried showering without the bag on, taking the bag off, having a shower and then putting a new bag on. But just pooing in the shower just got, it just got too messy and I was just like, I can’t be bothered with this. So now I just shower with the bag on, and that’s absolutely fine. The bag that I have dries really quickly so no problemo. Do I miss pooing? No, I don’t miss pooing. I think I miss the
satisfaction of that feeling of a morning after poo,
they’re always really good. What was the most important
thing I’ve learned? And I think the thing that I’ve learned is just how adaptable human beings are, and I genuinely believe this is why we are the dominant species on this planet because of how well we adapt. So there were also lots of
questions about my mental health journey and body confidence. So I feel like I’ve talked
about body confidence a lot. Having the surgery and having a stoma I definitely took a knock but
I’m genuinely good I think. I really like the scar, I
think it’s kind of cool. I sometimes have insecure moments I think. Every so often I’ll
just look in the mirror and just wish that I
could see my body again without the bag on and without a stoma but they just kind of
happen quite fleetingly. To be honest my main issue at the moment in terms of body confidence
is just my boobs, they’re just too big,
I hate it, I hate it. They’re so heavy and so painful, but that’s a whole different issue. My mental health has been fine
this year for the most part, and my mental health now is pretty good, especially now that I feel
like I’m getting back into work and I’m feeling productive. But I definitely still want to get therapy to just be able to say all of the shit that happened really. Because it was hugely
traumatic and I think most of my trauma is in
the time before surgery of when I was ill. Me and my mom both keep
these five year diaries, she was writing down all of the details like Hannah has this infusion today, we waited up until this time for someone to come and give her a new cannula because the old one wasn’t working. And Hannah ate a whole bag of
cheese and onion crisps today. She sent me a picture of it the other day and I tried to zoom in and read, and I couldn’t really read
her handwriting very well but I kind of got the gist of it. And I really, I don’t
know, my body kind of had a bit of a panicky reaction
just to kind of being confronted with the details of, okay, go and get therapy
to deal with what happened when you were ill in hospital. Fuck, I’m fine. Another question was what’s the best thing about having an ostomy,
that one came up a lot too. And the best thing is not
having to hold in farts because I have no control over the farts, and also you smell a fart it’s not me because you cannot smell
that stuff through the bag. It’s all very hygienic. And then the final
question I want to answer, I don’t know if I’ve
mentioned anywhere before but it’s about having
an orgasm after surgery and I felt like this was appropriate seeing as I talk about sex a lot as well. I found it really difficult
to orgasm after surgery because of the surgery, of cutting through my abdominal muscle, my whole stomach, you need those muscles to orgasm. You need to be able to
tense and use your core in order to get over the edge. For a while I would get to the brink and then it would just lose it because I didn’t have
the physical strength but it didn’t take very long at all. In fact I was still very weak,
and using a walking stick and still quite hunched
over and not being able to stand up straight or walk very far and I could have orgasms. So the orgasms came back quite quickly but it was definitely very
weird them disappearing, and I was a bit nervous that I would never be able to again but no, we persisted, we got the core strength back and then in came the orgasms. Thank you for watching, thank you so much for sticking with me this last year on this weird, wild journey of my health. Seriously when I was in hospital last year for so long I kind of thought that, well this is the end of my YouTube channel because the algorithm and
I’ve not uploaded for weeks and bleurgh, but no you
guys have stuck with it. I’ve found new audiences
through making content about stomas as well. If you do have any other
questions let me know in the comments and I’ll try and respond to as many as possible. Please do subscribe because
I make new videos every week and give this video a thumbs
up, thumbs up for Mona, and I’ll see you soon, bye. (bright bouncy music)

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