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Permanent Stoma or J Pouch Surgery? | Hannah Witton


– Hey everyone, welcome
back to my channel. I’m Hannah, and I have
a temporary ileostomy. Now an ileostomy is a type of stoma, which basically is my intestine
sticking out of my belly and I poo into a bag,
we’ve been over this. We’ve covered this, there’s
a whole darn playlist all about this shit, literal shit. So recently, I made a video all about whether I could get pregnant
and have kids with a stoma and in that, I mentioned
the fact that my ileostomy is temporary and I will have to decide at some point in the future
whether I want it reversed to create a J-pouch or if I want to have a permanent stoma, and I
was like would you like to see a video on that,
and some of you said yes, and so, that’s what this video is. J-pouch versus permanent
stoma, however it’s not a versus situation like it isn’t the fact that one is better than
the other, absolutely not. It is all about what is right
for the individual person. Some people might get
a choice in the matter, some people might not, so you know, every situation is different. I am currently in a situation
where I do have a choice, but you never know. That choice might actually
be taken away from me at some point depending on
what my body decides to do. So yeah, it’s not a
competition, once is not better than the other, it is entirely down to the individual situation. So why is my ileostomy temporary, how would it be made
permanent, and what the eff is a J-pouch? All great questions I hear you asking. So my ileostomy is
temporary because my rectum wasn’t removed during the surgery. It was only my large
intestine and my rectal stump is just still there, just hanging out, doing its own kind of annoying thing ’cause it’s inflamed at the moment, blah. But it’s there, and the
reason why it makes it a temporary stoma is because
you can reverse the stoma and create an internal
ileoanal pouch system as long as the rectum is still there. I’m not a doctor, don’t ask me why or how, that’s just the way it is. So question two, how would
you make the stoma permanent? By having surgery to remove the rectum. So some people in their first surgery, they might have their
entire colon and rectum removed in that first
surgery, and that would mean that they have a
permanent stoma, but I can have another surgery that
would remove my rectum and make my temporary
stoma a permanent one. What is a J-pouch? I’m still not 100% sure. (laughs) First of all, Google it,
but from my understanding, basically they take what is left which is the small intestine and they
fashion a J-pouch out of it which is basically like a new bowel, and it’s called a J-pouch ’cause it’s like in the shape of a J, it’s like whoo! And that basically becomes
your new large intestine. Like it functions in that way in the sense that it holds the stool before you then like get the urge to go
and then you release it out of your rectum and
into a toilet, hopefully. So the pouch system is created
out of your small intestine and I believe maybe they remove the rectum during that as well or they
attach it to the rectum somehow, again not a doctor. But yeah, so then you
would have an internal new system and so you
wouldn’t have a stoma anymore. But a J pouch is not actually the same as a large intestine, it does
function slightly differently. And for this video, I put a
call out on my social media for people with temporary
stomas, permanent stomas, and J pouches to share their experience. And so the folks with the
J pouches are gonna have a lot more coherent things
to say about that than me because I don’t know that experience. But it is super useful to hear, so thank you, thank
you so much to everyone who sent in clips and thank
you for sharing your story with me and my audience, and I hope that I don’t know, it sheds some light and raises awareness about the
different options out there and offers some support
for those like myself who are in the process of
deciding which way to go. And trying just to absorb as
much information as possible and I think it’s also really useful to hear stories from other patients because I can look up
online the risks of a stoma, risks of a J pouch, and
just read statistics and facts or whatever, but
hearing from other patients, hearing from other people about
their like day to day lives and what their experiences
are I found really valuable whilst also acknowledging
that it is not guaranteed that I would have the same
experience as someone else. It’s just good to know
to see how other people cope with various situations. So I asked everyone four
questions and I’m going to let them take it away
and then I will also be answering them. So the first question was
which did you choose and why? Was it an easy choice or
did you not get a choice? – I’m Emily, I’m 19 and I have a J-Pouch. I actually didn’t get a choice. I was born with Hirschsprung Disease, which is why I had to
have my colon removed. I had an ileostomy until
I was about two or three and then my parents made
the decision to give me the reconnection surgery
and give me a J-pouch. – Hi, my name is Sarah,
I have a permanent stoma called an ileostomy. I needed my stoma because
of intestinal dysmotility caused by Ehlers-Danlos Syndrome. I was actually never offered a J-pouch. I went straight for the
ileostomy mainly because of the slow transit
constipation, so that’s different from things like Crohn’s and Colitis. So it’s probably slightly
different in the sense of I can have a J-pouch quite easily because there’s no risk of sort of colitis or anything like that. It’s permanent in the sense that I’m never gonna have it reversed. Technically I still
have my colon but I had the loop stoma changed to
an end so it’s now harder for it to be reversed. – My name is Anne, and
I’m 58, so I’m an oldie and I had my J-pouch about 16 months ago. It was not a hard decision. I had had many, many years of
suffering Ulcerative Colitis, 25 approximately, and
three years of really, really awful problems
and my gastroenterologist tried everything, and
in the end they told me that surgery was the only way forwards. So I agreed to have my colon removed, but I always wanted to
look at alternatives to having a permanent ileostomy. I did a lot of research about the J-pouch and I decided that was for me. So a year after I had
had my first surgery, I had the second to form the pouch. – My name is Ele, I’m 40. I have a stoma. I didn’t have a choice in the end with getting my stoma. It just got to a point where they had their multidisciplinary
meeting and decided that my colon had to go, so
I had a subtotal colectomy and Rosie, the stoma came about. – I actually had J-pouch surgery. I got diagnosed with
Ulcerative Colitis in 2012. I tried every treatment available to me. I was basically told by my
specialist that I really didn’t have any other choice. That surgery was the only thing for me so I had the surgery which
was removing my bowel and creating a stoma,
basically that was probably the best thing I’ve ever done in my life. I had no quality of life up to that point. My second-stage surgery was
basically to construct my pouch. The third-stage surgery
which was my fourth surgery, basically everything went well this time. They removed my stoma or reversed it and closed me up. It basically started
to open up my new pouch and everything just worked well. – My name is Billie, I am
23 and I have a stoma bag. My stoma was emergency surgery. I had 11 months of unsuccessful treatment for my Ulcerative Colitis
and I didn’t get a choice. – Hi, my name is Vicky Smith. I am 37 years old, currently living with a permanent stoma. I wasn’t given a choice in
regards to my stoma surgery. It was lifesaving surgery
and just kind of woke up and had a stoma. – Hi, I’m Katie, I’m 23 years old and I have a stoma. So I have a permanent ileostomy. I decided to make my
stoma permanent a year ago when I had the final
surgery to remove my rectum and the last bit of bowel. For me it was quite an easy decision. I had my stoma for
three years before I had my second surgery and
it had gone really well. – So this question isn’t exactly
relevant for me right now, I have not made the choice
yet, I am very lucky that I currently do have that choice but I am experiencing some inflammation in my rectum currently
although it’s not debilitating, so I don’t think it is a
cause for having it removed earlier than I would like. The other thing that I did mention in my having kids with
a stoma video is that I actually want to have
children before I have any further surgery,
whether that is to create a permanent stoma or create a J pouch. So if I can, this decision
is actually for me not gonna happen for awhile. The second question was
what is your lifestyle slash poo routine like? I love hearing about
people’s poo routines. – My routine currently is
I wake up in the morning and I take my bag off
and I get in the shower and then I come out of the
shower and put a new one on. I do this every day. – Poo routine, well
frequent is the only thing I can use to describe it. My stoma is very active, anywhere between 10 and 15 times a day but it can sort of go
in excess of 25 times if I’m in a flare-up. – I usually go and empty
my pouch about four to five times a day, that’s on a good day. I deal with diarrhoea constipation daily or weekly sometimes, depending on like if I eat something that
my J-pouch doesn’t like. On a bad day I can go anywhere from six to eight times a day. I also always pack extra
clothes, underwear, pants, in my bag for if I’m going out anywhere and just in case I soil myself or I need just an extra change of clothes. – My second ileostomy was very difficult and causing me a lot of problems. I was going to the toilet
about eight times a day and maybe two or three times at night and there were times when
I thought what have I done? I’m back to square one, it’s just like being really ill again,
but as time goes by, the pouch starts to get
used to the new situation it’s finding itself in, your body adjusts and now I would say on
average it’s four times a day and once at night. Sometimes I have days when
it’s a little bit more frequent and yes, it’s a nuisance
but I don’t have pain, I don’t have urgency, I can
wait to go to the toilet. It’s amazing! And I feel like I’ve got my life back. – So my lifestyle since having my stoma has been so much better. I used to be running to
the toilet all the time, before my first surgery, I
was going 30, 40 times a day and was in a lot of pain. I was always anaemic. Honestly I’m just a lot
better because of my stoma and I know I was never well. I never had remission with my IBD, so to have remission is amazing. My poo routine is a lot easier now as well so I get up in the morning
and I empty my bag. Normally it’s quite full
by the time I wake up. Many have air as well. So I’ll empty it then. So I tend to empty it
four to five times a day which sounds a lot, but
actually it’s so simple. It’s so easy to do and it’s
not like having to be like, it’s not like oh my god, I
need to go empty my bag now. I kind of am in a routine with it. – At the minute I change Rosie
first thing in the morning at about half six, and
first empty is probably not ’til about three so I’m quite lucky. It’s quite a good thing,
this is what it’s like toothpaste thickness which is perfect, it’s not too runny. I get the odd runny bag
but otherwise it’s fine. – When everything is
fine with the J-pouch, I go probably once at
night and five to six times a day and that’s
fairly good compared to what I was going through
when I had Ulcerative Colitis where it was probably like
eight to 10 times a night anywhere up to 20 times during the day. – For me, my poo routine is
don’t get any urges to poo because my stoma is just
like constantly pooing, like I’m pooing right now and I maybe go to the toilet to empty it
every time I go for a wee. I’ve never actually counted it but maybe between four and six times
a day and then I also go once in the night usually. Question three, have you
had any complications? – I’m lucky to not have
had any complications. My surgeon was fantastic
and we had a couple of sort of skin issues under
my bag but other than that, I’ve been really lucky. – I’ve not had any complications
with the bag itself. Everything, I’ve had two blockages in four and a half years,
which considering I don’t really monitor what I
eat, I’m kind of like it’ll be fine. It’s quite a miracle really
that I’ve only had two and I’ve had complications
because of my IBD in the sense of I now
have arthritis because of my Ulcerative Colitis but apart from that, everything seems to be
going okay which is great. – Complications, I did
have minor complications at the beginning. I was in the hospital two
weeks after my surgery because they couldn’t get my
potassium levels under control. They were just really low so as a result, I just never want to
see a banana ever again. My rectal stump gave me
problems, I was going six to eight times a day
with and without blood on and off and when it
bled, it was painful, it was crampy, and so to stop that, I tried suppositories
and I couldn’t do it, I just couldn’t make them stay up there. I’m so sorry, Rosie’s
just in here farting way. And so I was then put on
enemas, mesalamine enemas. Then I moved onto the foam. Most people say they hate
it because it was like a rocket going off up
your bum but I loved them. They stayed in, they were great. You still had to plan
to be around a toilet because usually and especially first thing in the morning, there was a lot of urgency behind the mucus passing
and a couple of times I didn’t quite make it to the bathroom so I was always kind of still worried about being near a loo. – Pretty much exactly three
years after my surgery I started to get pouchitis,
which is the same, it is Ulcerative Colitis
but of my new pouch and since then, I’ve basically
had bouts and flare ups every probably like four to six months. When I’m going through a
flare up with pouchitis it can get quite bad, it can be anywhere from eight to 10 times during the day and three to four times at night so that does kinda wear
on you a little bit. – I’ve nearly had
accidents before in public and for me, part of having the ileostomy was a bit more security knowing that I’ve got a bag on, so I’m not gonna get like diarrhoea in the traditional sense. – I did have a lot of
complications, basically anything that could go wrong did. I wasn’t lucky, if you’d
like to use that word. I had a fistula, which
after multiple surgeries including a skin graft
which I believe is called a lotus petal surgery. My body just rejected
everything, so I didn’t really have any options but to remove the J-pouch and opt for a permanent stoma which is where I am at at the moment. Life with UC is interesting
and a challenge. – Yes, I have had pouchitis
quite a few times. The worst time I had it was in ninth grade when I was around 15, 16 and I got it and I was really sick for awhile. I have a lot of experience with pouchitis and usually it happens if I hold it in and don’t go when I need to and then I’ll just get
an infection and I know the medication I take
and what I have to do but it really isn’t any
fun and it can really kinda mess up the week or day. One more thing I wanted
to add about the lifestyle is that often it’s really
hard for me to find things that I can eat that’ll
not upset my stomach. I can’t have fried foods,
I can’t have pistachios which is interesting, I know. Anything that’s really
greasy really bothers me and I get really nauseous
and that can last for hours and so I really have to pick
and choose my foods wisely. Once I had chicken strips,
like fried chicken strips from a local diner and I had diarrhoea for a full 24 hours and
that was really rough and hard to deal with, and it was then that I knew I really had to start making those dietary changes in
order to accommodate Jamal, my J-pouch Jamal. – So far with my stoma,
I’ve had no complications with the actual stoma
itself, her name is Mona and she’s very well
behaved, we get each other. The main complications
that I’ve had is just in my rectum where I still have colitis, I still have inflammation,
I pop a little steroid suppository up my butt
every night and that has been great. But so far, no practical complications with the stoma. Can you say like body image, mental health stuff complications? Yes, that has complicated things. Question four, if you haven’t
had the second surgery yet, which way are you leaning? – So first when I first
woke up with my stoma, I was like I’m definitely
getting this reversed, I only have to wait like
six months then it’s gone, it’s fine, but then as I did more research and I spoke to people with pouches, I spoke to people who have had them and then gone back to a
stoma, spoke to surgeons, I spoke to stoma nurses,
I spoke to consultants, IBD consultants, and just a lot of people who had been through it and
I made my pros and cons list and literally the only pro
on it was losing the bag and actually I don’t
really mind about the bag. It’s fine, it doesn’t
stop me doing anything. I’m pretty low output
anyway, and I think you said in one of your videos
once, if it ain’t broke, and I booked in my permanent surgery and I had my Barbie butt
surgery April this year. And I would do it again and
again and again and again and it’s the best decision
ever because now I don’t pass mucus anymore. – I haven’t had my second surgery yet. I do have a temporary ileostomy, I am thinking I’m gonna keep my bag. I have gotten on so well with it and the reason why I’m leaning
towards permanent bag surgery rather than pouch is
because of the unknowns of pouch surgery and I
have got very comfortable with my bag, it means I can go out and I can have a life and
it has given me so much that I’ve gotten used to it
and I have a lovely boyfriend who has only ever known me with my bag so that’s also something
that I don’t worry about. So I’m enjoying bag life
and I think the unknowns of J-pouch surgery outweigh the fact that I would not have a bag anymore. – Still planning to have
my colon removed now and then eventually my rectum
when once I’ve had children. Because I’ve not had
children yet, I don’t want my risk of infertility, but that’s why I’ve chosen to have a permanent ileostomy over a J-pouch. – So personally I’m
leaning towards getting a permanent stoma and that is
not an easy decision to make. When I think about the idea
of having a stoma tomorrow, I’m like yeah, that’s fine, I got this. Tomorrow, pfft, peace or
piss, but then when I think about having a stoma forever, hmm. I really struggle with that concept. So there’s a few reasons why I’m leaning towards having a permanent stoma. One is because my stoma
is very well behaved, as I mentioned, I understand this process. It is what I know, it works fine for me, I have adjusted very well to it and if it ain’t broke, don’t fix it. Another reason is kind
of like as you heard, there are some complications that come with having a J-pouch
and actually up to 50% of patients will experience pouchitis, which is basically like Ulcerative Colitis but in your pouch, whereas
if I get my rectum removed, colitis is gone, like I literally do not have the disease anymore. Like that’s it, colitis can only occur in your large intestine and your rectum. You remove those organs, no more colitis. So that is definitely very appealing to me and one of the things that can happen if you have lots of
complications with a J-pouch and your body just rejects the new organ and it’s just like not working for you is that you would then have
to have that reversed again and you’d have to have a new stoma and that new stoma wouldn’t be Mona. That new stoma would be a
different stoma entirely because the part of your
intestine that they used to create the J-pouch,
from what I’ve heard, that part of your intestine
is like useless now. That is gone and so the
new stoma would be coming out of a different part of the organ, maybe a different part of
your stomach, I’m not sure. So there’s no knowing how
well that stoma would behave. Wouldn’t be as well behaved as Mona here. Also with a J-pouch, I’d
get urges to poo again and I would have like less
control over my bowel movements because I would need to
go when I needed to go, whereas like I’m just pooing constantly, I don’t ever like have to
rush to the toilet necessarily unless like my bag is really
full and about to explode. But most of the time I’m like guys, I could go for hours without
needing to go to the toilet because I’ve got a bag to catch it. I’m wearing an adult nappy. The main reason why I
would want a J-pouch though is so I don’t have a stoma bag, and so I like can see my stomach again, which I don’t know, maybe
is a vain, shallow reason but I don’t think that
should be discredited. Like that’s important
to me and that’s fine but I don’t know, I think the other things kind of outweigh it but
I think it’s totally fine to have that as a consideration. I would like to not shame
myself into caring about my appearance, thank you very much. And that is important to
some people, including myself but also being in control
of my body after going through a horrendous
time of being completely not in control of my body, that is also very important to me. So, hmm, hmm-hmm-hmm-hmm-hmm. But like I said, if it can be helped, I want to wait until after I’ve had kids to make the decision of
which way I want to go. Doctors haven’t given
an exact timeline on it on when I would need to have kids by or when I would need to decide but they do kind of say like
soonish because the longer you just leave your rectal
stump hanging out in there, your chances of rectal cancer
increase quite significantly. Like in medical doctor terms, it gets into the double figure percentages which is apparently quite high, but we shall see and thank you so much for
joining me on this journey, allowing me to share my thoughts
and experiences with you and thank you to all of the
people who submitted clips for this video and shared your experiences with us too, so, so, so appreciated. Thank you so much. If you have a J-pouch or a stoma, I would love to hear
in the comment section your answer to those
four questions and where you’re currently at in all of this stuff and also if you have a
different kind of condition and you also have to kind of make a choice at some point between different options for your future, for your
body, medically or whatever that is, I would love for
you if you’re comfortable to share your experiences
and your thought process with that and maybe you
can find other people in a similar situation
to you in the comments. Please do give the video a
thumbs up if you enjoyed it and make sure to subscribe
’cause I make new videos every week and I’ll see
you in the next one, bye!

100 thoughts on “Permanent Stoma or J Pouch Surgery? | Hannah Witton

  1. Well if you have the chance to choose between the two, only you know, nobody has the right to judge not even if its for esthetics reasons haha
    Anyway, thanks for the video Hannah, i don't have a stoma or a j-pouch but it was very informative, i really liked to hear various experiences =D

  2. As a former nurse I’ve taken care of people with stomas and pouches. J pouch issues such as flair ups and infection always seem to complicate treatment, and rarely subsided usually resulting in unplanned surgery and extended recovery.

    I think you have wonderfully adapted into a very healthy relationship with “Mona,” and your videos- regardless of the topic- are a well needed resource!

    Don’t stop!

  3. When my cousin was 40 years old, he had an emergency surgery for partial removal of the large intestine due to intestinal perforation as a complication of diverticulitis. It got really infected and they had to remove quite a chunk of the large intestine and they couldn't connect it back to the rectum. He had a stoma for 6 months and then they tried to connect the rectum again but the surgery failed and in the end they removed the whole large intestine and proceeded with the Jpouch. I remember my aunt being super sad thinking he'll poo himself in public because the doctor told them that could be a possibility while his body adjusted to the Jpouch.
    However, he's been living with a Jpouch for 8 years now and so far no complications, he's gained back all the weight he lost with the previous surgeries and also he eats like he used to pre surgery. He adjusted quite easily. No accidents either!
    I think the Jpouch worked for him because he had a different condition; I understand ulcerative colitis is much worse so it may not work that well for people with UC.
    Everyone in my family was new to stomas and Jpouches and it was quite shocking when it happened, so I think that's why he wanted to go back to his pre surgery poo routine and everyone supported him because that's all we knew. The idea of a stoma seemed terrible to us.
    I was 16 when that happened and I've always had bowel issues (IBS not properly diagnosed with medical exams, just by a doctor that figured it out based on my symptoms) and I was afraid of having a similar surgery in the future. Thanks to your videos, I understand it better now, so I'm prepared to have a more positive mentality if it ever happens (though it is unlikely but anything can happen) and I'm aware that many people live with stomas too and they're doing just fine 🙂

  4. I have had Crohn’s for 14 years and haven’t needed surgery yet, but I love these videos because I know I may need to make this choice in the future! Thanks for educating us 💜

  5. This is so interesting to know even though I don't have this condition. My Grandma used to have a stoma and then she got it reversed as it was painful and she didn't like having one. The decision must be so complex though and its so interesting to hear both sides. I have Raynaud's disease which is very minor and I got offered medication but I'd have to take it for the rest of my life so I just chose to live with it and it is one of my insecurities as I don't like that my extremities change colour so people comment on it but I'm learning to come to terms with it as it is very common and normal and nothing to be ashamed of.

  6. My body hates me… I live with a temporary ileostomy and before surgery was going to bathroom 30 times a day at its worst. After surgery, I have had relatively smooth sailing with my ileostomy, I empty my bag twice a day, YES 2 TIMES! Once the morning and once and night. Poo routine is basically afternoon until I wake up and then after wake up to after lunch its not really active. My body hates me for all the other non-UC side effects I have developed since my surgery, fibromyalgia and all of those pains which were kind of there before surgery but now they have increased, the fatigue, the drowsiness, losing consciousness from being so drowsy has happened multiple times. I am actually in a very difficult place in my life, I am not in control of my life, and I am not entirely sure what treatment I need, and I am battling the american social security for disability which is looking like the beginning of 2021 may be when I get approved, luckily I am on some charity programs to be able to see some doctors and a gastro doctor but I still have no income or revenue and I dont know what my future is going to be like and its terrifying to think about, I am hoping its smooth sailing until I get approved but with living with my elderly parents things could go south very quickly for me. I have tried a lot, I only drink water, 5 bottles a day, 6 on the days I go to the gym, I work out and exercise what little I can, I rarely have sugar or caffeine. I am trying but none of its effected my symptoms patterns and my doctors are stumped and I need help… I NEED HELP. I dont know where to go to or how to get it any faster than I am but I am suffering quite a bit and live in a toxic environment that I may not be able to get away from until 2021, i wonder whats going to be left of me and mental state if I stay here for that long, I NEED HELP. and I feel so guilty for having to say that :/

  7. Very informative video, thank you for being so open.
    I have read about a continent ileostomy (k pouch) being done in the US. Has anyone heard of it or had one?

  8. I have a stoma due to severe UC. I had emergency surgery so didn't have a choice. I definitely don't want a J pouch because like you, my rectum is not well behaved. There's no way I want to go back to being incontinent and my stoma is very well behaved. I love the freedom of the bag. My surgeon isn't pushing me to get my rectum removed though. I just have regular sigmoidoscopies to check for cancerous cells. So far, so good!

  9. I am 22 and have had my temporary ileostomy due to UC since April of 2019 and have adjusted extremely well. The same week I was diagnosed with UC, I had emergency surgery to remove my colon and ended up with my stoma, Stanley. I’ve been having a lot of complications with inflammation in my rectum—I’ve tried suppositories and hydrocortisone enemas but nothing seems to be helping. I’m currently leaning towards just removing my rectum to eliminate my UC symptoms and urgency and having a permanent stoma but I’m also hesitate because my stoma and living with UC is still so new to me. I love your videos Hannah and watching how you’ve adjusted to stoma life really encouraged me to recover to my fullest after my surgery—you’ve been a HUGE inspiration for me! ❤️

  10. I have a semi-permanent ileostomy and a jpouch. I had a temp loop stoma while my jpouch healed. When I reconnected my jpouch became inflamed with chronic pouchitis which was resistant to all medical treatment (so was my UC). I opted to return to the loop stoma. My loop stoma was very tilted down and had a lot of leaking. So they changed my loop to an end stoma. My jpouch still exists in my body. It is essentially a stump as it is no longer attached to my upper GI. It is not inflamed currently.

    In a few years, I will attempt to reattach. If it becomes inflamed again with pouchitis, I will revert to a permanent ileostomy.

  11. I've (21M) been through a very similar situation to you. I was diagnosed with UC 8 years ago, had my colon taken out 4 years ago, and lived with my stoma for another year. At that point, I was where you are now; the choice to have a j-pouch or to keep my stoma. Ultimately I chose to go for a j-pouch simply because I wanted to take the chance of becoming as close to normal as possible. I didn't want to have the feeling of a missed opportunity in the back of my mind for the rest of my life. I had no real issues with my stoma, other than the obvious cosmetic issues. Since having the surgery for my j-pouch, despite a very difficult first year, I am very happy I made the decision. The first year was full of a lot of pain, and many trips to the toilet. I had pouchitis straight away and would go to the toilet up to 25 times a day. However, pouchitis was solved with antibiotics and the pouch eventually adjusted so that I have control. Now I rarely get pouchitis (when I do, antibiotics solve straight away), and I go to the bathroom 6 times a day and twice at night on an average night. I may go to the toilet more than I had before, but there is never urgency or pain. As long as I plan well, make sure there is a bathroom nearby, I never have issues when I'm out and about! That being said, having to wake up a lot at night can be a struggle and really, is my only problem. There was a lot of short term pain that came with my j-pouch, but now I can do whatever I want, and pretty much eat all sorts. Once you learn your pouch, you can have complete control over your body. The long term gain made it completely worth it.

    There's so much I could say, which is why its such a hard decision to make. So much to weigh up…. but I hope you make the right decision for you! Thanks for providing a platform for people going through the same. It always gets better! 🙂

  12. wow this is amazing!!! so informative and interesting even though I don't have a stoma/any of these conditions, thank you so much for spreading awareness and just talking about all of it openly. i really loved that you included all of these little videos, it's really interesting to hear all the different perspectives. it kinda felt like you were all having a discussion/a panel on the topic hahah!
    also, i had no clue that with a j pouch you still have to go to the toilet several times a day instead of just one-two!

  13. Since you mention wanting kids, have you ever done a video about people who don't want children? I'm a woman in my late twenties and don't actually like or want children, have known this since I was 10 and am very certain in my decision despite many people in my life telling me I'm wrong for not liking kids. I've got nothing against those who want to have kids of course, it's just not something I want for myself. I always find it odd hearing people talk about wanting kids as it just doesn't register for me, give me a puppy instead any day. Could be an interesting video topic?

  14. 3:14 yes they remove your rectum and then hook the pouch up to your butt at the same time that they make the pouch. To give it time to heal they'll generally create a loop ileostomy further up the small intestine. After a few months for the pouch to heal they'll then take out the ileostomy and then you'll be using the pouch. I'm having surgery to create the pouch next week.

  15. I have a permanent illeostomy. I didn’t have the choice was created the day I was born. ( 19 years ago) due to a rare condition called cloacal exstrophy.

  16. My fiancée has a j pouch – he has had if 30 years one of the firsts – there are other issues that come with that 🙂

  17. Have followed your Social Pages for about 2 years now. Am fascinated by the content you cover, so a huge thank you for that!😊 I have noticed however that you haven't done a video on Mental Health & Autism. What is your perspective/view on Autism and Asperger's? #HeroHannah#ThankYouForBeingTheVoiceThatPeopleWishTheyHad!

  18. If you had the J pouch surgery done and your rectum became too diseased (God forbid), can you go back to a stoma? Hope that makes sense 🥴

  19. I've heard of other pouch options, and particularly of a "w pouch" as an alternative to a j pouch. I'd be interested to hear either from patients or from medical professionals as to why they would recommend/ chose a j pouch over a w pouch (or if the former were even offered a choice) since the j pouch seems to be what's most common, even though at least from my limited non-professional understanding, a w pouch utilises a greater area of the small intestine, hence provides a bigger pouch which i would think would allow for less frequent need to go to the toilet?

  20. Completely unrelated, but all over facebook right now (and I don't understand how twitter works) – have you seen #teamtrees? So far I see mostly science youtubers, but why not the lifestyle ones? Have you considered making a related video?

  21. I have elhers danlos and as far as i know it only effects my joints/skin atm but im always fascinated by the various symptoms it can have and how people manage it, thanks for including us, i still have to explain myself to doctors and pretty much everyone because there is so little awareness of us 😔🤔 xx

  22. Surely even if you did get cancer cells in the rectum, the solution would just be to remove your rectum anyway (hence permanent stoma) so kinda same result? Obvs scarey but if your having regular checkups anyway im assuming it would get noticed super early? Idk just a thought, sorry if you didnt want to think about that xx

  23. I've had UC for 11 years and had constant flare-ups and surgery has been seriously talked about this year. I've always known that if needed surgery to remove my bowel that I would much rather have a permanent stoma than a j-pouch. This video has really helped reaffirm my decision! 💕

  24. Although I don't have a stoma/jpouch (luckily I never have to as I don't have any condition that would mean I have to make that kind of choice or have that surgery in general) I can relate to not having a choice in terms of another medical condition. I've had epilepsy since the age of 8 and been on medication since the age of 11, I'm now 28. At the end of last year (through consulting with my consultant neurologist) I decided to come off the medication because I wanted to see if I had grown out of the condition (epilepsy is one of those conditions where if it starts off in early childhood people can, but not always, grow out of it just as with asthma). However, three months later I started having Aura's (mini seizures) and finally had a massive fit in march of this year. Thus the choice was taken out of my hands and I was started on a new type of medication. In my opinion, having been weaned off sodium valproate gave me the clarity I needed as I know that I have this condition for life. Also, Sodium valproate is a very bad medication for women of childbearing age as it can have really negative impacts on the unborn child. Thus I hit two birds with one stone, found out I still have epilepsy and managed to change my medication to a much more appropriate one that luckily is completely effective for me in terms of stopping the seizures and all the side effects of my type of epilepsy.

  25. I’ve had a jpouch since 1992 when I was 23. The area in Canada that I’m in I was one of the first to get this type of surgery and I was the first to get pregnant with a jpouch. It was the best decision I made. I’m 51 and just 10 weeks ago I had surgery and had a temporary loop ileostomy put in. Hopefully they will reverse it in the new year. Good luck with any decision you make.

  26. I'm possibly having a stoma soon. My colorectal surgeon that if the rectum is left then there is a risk of it getting colitis. This is because the colon and rectum need poo going through it to keep it healthy. So for someone who already has colitis like yourself I'm surprised your rectum isn't permanently inflamed!

  27. I have a J pouch due to a stricture caused by Crohn’s disease. For me it has been great. It was my choice along with my surgeon. It was all completed in one surgery. I woke up with my colon removed and my j pouch already to go and attached. I eat whatever I want but I do have to poo frequently. Typically I have to go after I eat. It is usually very liquid. Imodium does help. I sometime get hemorrhoids but they are well controlled with witch hazel. On a good day I might only go 3-4 times a day. I can usually hold it pretty well if I need to but once in a while it is very uncomfortable unless I can go. I do not worry about being near a toilet. I take car trips. I even commute to work. I am so pleased with my j pouch but everyone should do what works best for them.

  28. Thank you so much Hannah for letting me participate in your video!! It’s amazing to help raise awareness and educate in life with a stoma/j-pouch!!! First time I’ve ever really talked about what I’m going through & wouldn’t hesitate to do it again xx

  29. I've had my ileostomy for little over 10 years now and have always considered it permanent, but I also still have the anus and a small part of the rectum. I'm aware that the medical system in different countries thinks differently, but It is important to understand that an ostomy/stoma is always permanent as long as there is no immediate plan to change it. You medically speaking do not need to have the anus or rectum removed unless it becomes a complication, and here in Denmark (and as I understand it, Canada is the same way) they will not make you go through the operation to remove it until it's necessary, because that operation in itself carries a high risk of nerve damage as well a few other complications. But with time, because the anus isn't in use, it will start to degrade and its muscles will deteriorate to the point where it will no longer be possible to perform a J-pouch operation, because you would have zero control over it.

    When my UC broke out (10 years ago) the steroids didn't work and I ended up in trauma with heart problems from the blood loss, but while in hospital I developed a colonary infection which caused blood poisening, and was told after the ostomy operation that the colon and rectum remnant (which I've dubbed "stumpy") was so damaged that it would have to rest, possibly for a few years, before a J-pouch would be possible. But talking to people that have J-pouch and have had it for a long time, and hearing what it's like to live with it and the complications they've had, I felt the ostomy was much more preferable for me. At this point the bag don't bother me and I don't really notice it unless it becomes inflated. My bowels have become so regular I only have to empty it 3-4 times a day, I never have to get up at night (I did at first), and as long as I eat appropriately I don't have any issues with it or my bowels whatsoever. I was operated in Canada and went back to Denmark little less than a year later, and when I went to the hospital here and requested a checkup I felt they were pushing for a J-pouch, which annoyed me so much that I complained and ended up talking to their supervising doctor, who ensured me that neither operation is necessary unless there's a medical reason for it and it will always be my choice whether I want it.

    Only complications I've had were not directly related to the ostomy. The plates I started with at first were not suitable for the humid Danish summer because my body runs hot and I sweat a lot, so the skin under the plate started to dissolve – which was painful and looked terrifying because it causes bloody crater-like wounds, but the liquidation meant the plates wouldn't stick and because the skin couldn't breathe it just kept getting worse. I had to switch to different equipment and was given betnovat to put on the damaged skin, and once it healed I've not had any issues whatsoever since. Instead I've developed bechterew as well, which has completely ruined my spine and made it impossible for me to ever have a normal life again.

  30. Hi I'm in a slightly different situation I had colon cancer a year ago and have a colostomy of which I have no routine, having it has made me really anxious, very self conscious and fearful, I'm not happy but it did save my life, I have a consultation due to discuss a reversal which is easier than a j-pouch coz I believe they just join the good healthy bits of my colon back together, hopefully , finger's crossed. Thank you for making this all quite cool to talk about, love your videos x

  31. Hello Hannah! I am currently in graduate school studying the intestine (mainly from the perspective of the enteric nervous system and its function in disease but as well as a tissue replacement for UC and other resections) and I wanted to thank you for sharing so much about your disease and creating this community. Research can be very trying and your videos (and your followers) often remind me of why my work matters and who all it could impact.

  32. I wrote to the dms of Elle, who appears on the video, and she helped me with my mom experience, it's so important to see real people with these real issues, it helps a lot, mentally.

  33. This video was was super interesting and educational, and I think something like this would be really useful with birth control. Like you said, you can look up the side effects but hearing the experiences of others is really invaluable.

  34. I dont have any conditions but always so interested to learn & hear ppl's experiences!! Its turns figures into real people's experiences which is something everyone should see 🙂 Thank you & Everyone for sharing! X

  35. I don’t have these particular issues but I do have moderate endometriosis so bc I have this my fertility rate can drop significantly as I get older. I’m 30y/o and my dr has said by the time I’m 35 I’ll probably be getting a hysterectomy, Kids or not.

  36. I remember one doctor telling me try not to wait more than 5 years before deciding on permanent or j pouch….but I've had my illeostomy 8 years…I am thinking of having my surgery soon though and making it permanent for many of the reasons you've said…but I'm unsure when or if I will have children (i'm 28 and leaning more towards not having children). Wondering if anyone here even knows of complications or the reasons why having a permanent illeostomy would prevent pregnancy other than possible lower fertility? Anyone had experience with pregnancy with a permanent stoma?

  37. Glad I found your channel. I was diagnosed with Crohn’s in 2011 and since then it’s been a very rocky ride. My whole life I had bowel issues but it didn’t manifest as Crohn’s until later. I’ve been on Remicade and Humira which I both failed. Currently on Entyvio with hardly any improvement and the side effects have been debilitating at times. I have strictures in my intestines but the worst one is right at my ileum. I talked with my colorectal surgeon and we both agree that a removal of that stricture and temporary bag is the best way to go for now. I’ve been having so many issues lately and it feels like things are just getting worse. So I’ll probably be getting this surgery ASAP once I see her next week to go over my test results. Not only am I having issues with the abdominal aspect, but my pelvic floor muscles are just destroyed from years of abuse. I have horrible leakage problems that I’ve tried so hard to remedy. I honestly can’t wait to get this surgery. It feels like the light at the end of the tunnel. It’s so close but feels so far while I’m still going through struggles on a daily basis. I can’t work, I can’t travel, I can hardly eat, I can’t gain weight, etc. just so many problems that I can see just going away once I get the surgery. Thank you for making these videos.

  38. For Ele…the lady with the potassium deficiency…a friend had the same problem after a stomach surgery…her vitamin pills were not digesting properly so she could not get her levels up.
    Once they figured that out…she started taking the chewables (gummy-type) and now her levels are perfect…maybe you can do the same for your low potassium levels too.
    For Hannah…given the facts that you like Mona and are still having colitis in your rectum…you might really be better off with keeping her permanently…especially with the cancer threat.
    Just curious…will you be getting a tubal ligation or hysterectomy after you have kids…or sticking with your current birth control method?

  39. I had a temporary colostomy (Stumpy). I didn't have a choice, as I had a 100% blockage (colon cancer) and had emergency surgery. They removed half of my sigmoid colon. I had problems as my stoma was recessed, at a fold in my skin and at a bad place at my waist. I had it reversed last month, after about 10 1/2 months. They weren't sure if there would be enough left to reattach, but in the end, it was successful. R.I.P. Stumpy!

  40. I had ulcerative colitis for 6 years and had to get an ileostomy in 1987. I did not have a choice. I immediately felt better and recovered quickly. I elected to get the J pouch in 1989. This was a difficult decision since I was feeling quite well. This surgery was harder on me than the first. I think it was because I felt so bad before the initial surgery. The final surgery (connect to rectum) was relatively easy. I have been blessed to not have any problems since 1989. I would make the same decision again. Good luck.

  41. I had a j pouch in 96' and it did not work, they may be better now, it sucked for me! I get blockages every now and again with the permanent ostomy! I only have my small intestine now.

  42. I have IBD – Crohn's. Was diagnosed in April. Right now my treatment is daily tablets and infusions every 8 weeks. So far the pain has been only when I've forgotten to take a tablet or reasons unexplained until it happens again and they no more. I have been told if I have the pain again and it is mixed with other symptoms I will need emergency surgery. Honestly I am scared of having any kind of surgery, I've cried at the thought of it, the stoma I am slightly more comfortable with thanks to Hannah's videos, but I'm still scared, I hate change and this is a big one.

  43. You seem like the person to ask lol: Can a person that is in a similar position to you, in that they have the rectal stump (i think you called it?) , have anal sex? Question just crossed my mind, and if I cant ask you, I cant ask anyone 😂

  44. Your videos are all so educational and interesting! Thank you so much for sharing your stoma journey 🙂 Please keep up the good work.

  45. i downplay the frustration my ibd causes me all the time because it's embarrassing to have constant constipation or poo incontence where i don't even realize i've pooped my pants until i smell it or i'm on the toilet and your speaking so openly makes it feel easier to own

  46. I appreciated/related to a lot of folks naming their stoma/pouch. My first cancer was a tumor, which my mom and I just called "junior" and some of my nurses took to calling Fred.

  47. I have IBS (which I know isn’t the same as IBD but I feel we share some of the same problems to where our bowels take over our lives) with both diarrhea and severe constipation they both come along with severe abdominal cramping that makes me go to the hospital. I had my first colonoscopy in 2017 where my GI found a precancerous polyp and from now on every 3 years I must have a colonoscopy to make sure I don’t get colon cancer. I know I don’t have any decisions to make right now but by god with all my problems I do feel like I will have some sort of bowel surgery choice in my future. There are moments where I just wanna give up and have a bag to poo in and have no more pain/worries.

  48. I don’t have IBD but I have IBS and anything that would eliminate having to be near the toilet or urgency would be 1000% worth it for me.

  49. My gran was diagnosed with stage 3 colon cancer 2 years ago, she got surgery to remove the tumor. The doctor told us that he will do the best to avoid needing a permanent stoma. Unfortunately the cancer was also slightly affecting the rectal stem so that had to be removed too. My gran has a permanent stoma.
    It was quite a rollercoaster of an adjustment, the nurses at the hospital weren't correctly trained on how to stick the bag onto the stoma (they forgot to cut the hole and stuck the entire bag on, not just around the stoma.)
    Now we are all adjusted to our new family member and still slightly giggle when it makes funny noises!

  50. Hi Hannah – I had a permanent stoma this February just gone due to a condition called F.A.P (Polyposis). I opted for a ileostomy over the j pouch because if the pouch fails, I was told the ileostomy they give you in that case is completely different and needs FAR more management and can rule your life much more, as opposed to having a permanent ileostomy from the start. I had mine at the UKs teaching hospital for bowels in London, they’ve been amazing. They cover all bowel conditions, including Ulcerative colitis

  51. Shout out to all these people who have been suffering a lot in their lives. Not many people know how difficult are the IBDs.

  52. I am 20 years old and got diagnosed with UC when I was 13. Literally around the same time as you I decided to have the operation due to the fact that I had tried all the medication and at one point was on 22 tablets a day and very regular infusions. I am now nearly 2 years in January with my stoma called Steave and I have my rectal stump in me just like you. Unfortunately the stump does not respond well to any form of treatment and I am passing blood and mucus at least 6 times a day. I don't want to rush into surgery to remove the rectal stump due to the same issue you have where it's sooo difficult to decide between either a J-pouch or permanent stoma. I also hope this story shows no matter how bad your IBD is everyone who suffers will understand your pain and stick by you. Hope this helps 😊.

  53. I understand the want to have your body back to looking "normal" but I personally feel the risks of further pain, more UC and then more surgery that may have massive life altering complications just isn't worth having a visible stomach. You already have the scars from full open surgery and are never going to be completely "normal" looking again, I don't understand why you would risk generally good health for aesthetic reasons, seems kinda daft to me. Not to knock anyone's choices but I personally would rather have a healthy body with less risks.

  54. this is so interesting to me. my mum has uc but is very well set up with medications and has not had a flare up in about 25 years which means about 2 years before i was born. that flare up was pretty bad and she was very lucky and had a really good dr who not only saved her life but also her colon. but because it was before i was born and she didn't really have any problems since (she takes a lot of medication), uc was always this thing that yes some people have it and it can't be cured but it can also be treated easily and then doesn't bother you ever really. but that's not really the case for everybody with uc and i just didn't know.

  55. I love these kind of videos because I‘m currently in the process of deciding too. I had my colectomy last year. Due to complications I‘ve had the temporary stoma only for nearly 2 mounths and then they went straight for the jpouch. Didn‘t really get a choice back then. Unfortunately I‘m struggling with constant pouchitis and this just feels like having a colitis flare up again. This sucks, so I‘m also thinking about going for a permanent ileostomy. Of that means not spending my life on the toilet again, I‘ll go for it.

  56. Great video! Do you think you could make a video about urostomy? I have had that for 5 1/2 years and it completely changed my life for the better, but not many people talk about it and I think it would definitely help someone 😊

  57. In 2002 I had an anterior resection as a result of colo-rectal cancer, had my rectum removed and was given an internal pouch and a temporary ileostomy. At the time, I was in total denial about the ileostomy and didn't want a bag. I didn't like the smell of 'the output' (I never called it poo as it didn't seem like it!) and hated emptying and changing the bag. It often leaked, stained my clothes and I got blistered skin around the stoma as it was so acidic – so I couldn't wait to have it reversed. But after it was reversed, life became a nightmare at times. Going to the toilet could be so painful that it made me cry at times. I often had an urgency to go and sometimes didn't make it to the loo. It all took a very long time to heal and to normalise – years! I've tried cutting out all sorts of different food groups to see if it would make a difference, but there doesn't seem to be a pattern at all. Touch wood, I am going through a good phase at the moment and don't seem to have had any problems for quite a few months. Sometimes I can eat something and it will go straight through me. Sometimes I will do a poo up to 10 times a day, but at the moment, I would say 3-4 and I am also not having to get up in the night – which I hate!! I also get really bad, uncontrollable flatulence at times! I think it's great what you are doing Hannah! I wish all this information had been available when I was going through my worst! I have learned some new things from your videos. Firstly, my pouch was just called an internal pouch – so I don't know if this is the same as a J pouch. I didn't know that 'pouchitis' was a thing and that maybe I have been suffering from it from time to time. Nobody ever told me that having my rectum removed could make me infertile?! – not that it really mattered as I already had three children at the time – but what if I had wanted more?(!!) Then again, I am living proof that one can have a pouch without a rectum! About 5 years ago, a consultant offered to insert a pacemaker type thing in my spine which would control the number of times I went to the loo. He told me that the downside of this would be that I wouldn't ever be able to have an MRI scan, as the battery in it would explode. I decided against it and am glad I did just in case I ever need an MRI and also as I am currently not going to the loo 10 times a day! Thank you Hannah for creating this platform so that people can share their experiences.

  58. I find these sorts of video really interesting. I'm a student nurse and I've just found out that my first placement will be on the female GI surgery ward, so I feel like these sorts of videos really help me with understanding the patient

  59. I’m currently in the process of choosing between a full fusion of my neck or a partial one now and a second partial one in the future. I still have some time to choose, but it’s stressing me out and I want to make sure I make the right decision!

  60. My mother (she's paralyzed) had the choice to get a colostomy and I begged her because I knew that externally it would make her have some more freedom. Your videos really have brought into light some other issues that she was dealing with, ones I dont think she would admit to having before she made the decision. Her colostomy bag has changed her life though and she's super happy with her decision.

  61. I tried watching the video, but my vasovagal syncope syndrome would not let me, so before fainting i had to stop.

  62. I don’t have a stoma but do have a medical decision to make. I have a degenerative hearing condition that means I will eventually go deaf, at least in one ear if not both. My choice is between hearing aids or surgery. Hearing aids help but are in no way perfect hearing, they take a lot of maintenance and thinking about on a day to day basis but the surgery could deafen me completely straight away so I wouldn’t be able to use hearing aids at all and would be reliant on my currently good ear. While I have one ear that is perfect I am not considering surgery as it is such a big risk but further down the line I may opt for it, luckily I can opt for it at any time, there is no limit on it

  63. Thank you so much for sharing!
    Techinically, my stoma is temporary because I still have my jpouch but I have no intention of going back to it so eventually it'll be a permanant end ileostomy. If I could go back in time, I would chose to go permanant instead of going the reversal route bcause of all the issues I have had since the reversal started.
    I had ileus straight away after my jpouch surgery which kept me in the hospital for a month, after which, my loop ileostomy caused me quite a few issues because it was so flush against my skin that it would burn under the adhesive and made my skin very sore. I had to use barrier rings under the bag just so I didn't have to change every day.
    The biggest complication I had though, resulted in my current loop-ostomy; I had a blockage near my newly-working jpouch and after about two-ish weeks of being in agony from a distended tummy that made me look 5 months pregnant, I was finally put forward for investigation prior to possible surgery, during which one doctor perferating my bowel by accident which meant that surgery was the only option after that. I will eventually have a fifth surgery to remove my jpouch and rectum and form a permanant end ileostomy.
    My "routine" is to change the bag every other day in the morning and empty it whenever I go pee or if it feels full (the timing of which depends on what I've eaten). I find the output from a loop ileostomy is looser than that of an end but nothing a bag of sweets won't fix.
    It's a difficult decision to make so I would say take your time and do whatever you feel the most comfortable with.

  64. Hannah, you're lucky to have a choice. I have a permanent stoma, ileostomy, I didn't have a choice because I had colon and rectal cancer. In order to improve my odds of the cancer not returning I had to have it all removed. The one good thing about a permanent stoma is I NEVER have to sit on a public toilet again.

  65. Okay so i really wanted to respond to the questions but I ramble a lot… I hope you don't mind. 💕

    1) Which did you choose & why? Was it an easy choice? Or did you not get a choice?

    Hello, I'm Stephanie, 24, and I had emergency temporary ileostomy surgery end of march due to two perforations and an infection in my large intestine and didn't have much of a choice in the matter. I woke up with my ileostomy and had to learn to incorporate her into my life which has been pretty seamless because I had you as a sort of role model i guess you could say. It made it easier knowing I wasn't alone and seeing how it wasn't something that held you back helped me see the bright side in this curveball I now had to deal with. Also, my family was very helpful and encouraging so I didn't take too long to assimilate.

    2) What is your lifestyle/poo routine like?
    I'm a bit bummed that there are certain things I love that mona doesn't agree with, but fortunately most of the things I love are completely fine. I feel like my output and frequency depends on what I've eaten that day, but most of the time on average I would say I empty my bag about 3 to 5 times a day. On a good day once I've emptied for the night she won't be active until the next morning after I've had breakfast.
     
    3) Have you had any complications?  

    About a month or so after my surgery i felt the same symptoms as i did when i had to get my emergency surgery so i immediately rushed to my doctor to be sure something terrible wasn't going on. Fortunately it turned out to be nothing serious and besides that i don't think anything else has come up. I'm guessing it was maybe a blockage or something of the sort but it went away within the week of going to my checkup.

    4) If you haven't had the second surgery yet, which way are you leaning?
    I haven't had reversal surgery yet but I think I want to get it done. My doctor hasn't yet gone into details about what my options are but I think I'll just be going for whatever he thinks my best option is. All I know is I want to be able to go out and about without worries of my bag is going to pop or I'm going to soil myself so I opt for whichever option allows me that, honestly. I feel the same as you- I don't mind my bag much but if given the option I think I would jump on the opportunity to get it reversed.

  66. I have EDS and have digestion and pooping issues, so I know this kind of thing is possibly in my future so this gives me so so so much hope for me that if this ever happens I'll be okay no matter what! Thank you so much Hannah!! <3 <3 xxx

  67. I put this decision off for ten years. I also was happy with my stoma and did not want any more surgery and was scared.by risks and possible complications of pouch surgery. However things changed. Be aware that you are very happy with the stoma now and it is very wel behaved – this.may change. My pouch surgery was rough but i am very glad i finally took the plunge. It is not vain to not want a stoma for the rest.of.your life.

  68. Have you considered making a longer form documentary about ibd/stomas? This video is so enlightening and does more to educate than almost any documentary I've ever watched. Before you started making videos about IBD I knew basically nothing about it. I dont suffer from IBD but I'm so glad that i'm much better equipped to understand anyone who I meet who does.

  69. First off,your Awesome !! I was diagnosed 4 years ago with severe UC. I was pretty bad off the first 2 years, dropping from 220lbs to 124lbs over those 2 years . None of the drugs,steroids ,infusions,injections or diets were improving my condition. Dr's were wanting to push for the removal of my whole descending colon at that point. I was trying to come to grips with eventual choice of j pouch or stoma . Against my specialists advice, I continued researching other options on my own. I changed Dr's and tried an experimental drug that was being tested for approval at the time. I was lucky,my body responded well to the Entyvio infusions. Im not in complete remission, but in a way better state of physical health and mind. My Flare ups are less frequent with hardly any urgency .I don't know the details on how far you have gone with your surgery, but Please make sure you have tried every avenue before doing anything that cant be undone.

  70. Hey, hannah, do you have a lot of people take your profile, image and use them to create fake profiles to scam ppl? I know it dosen't pertain to your video but I had someone start talking to me and I didn't know who you were than they sent me a video they said was them making cookies, guess what it was your cookie video of genital cookies lol. I Google genital cookies video and you came up. I find your channel interesting and watch a handful of your videos. Interesting what you do and your good at it. Keep up the good work.

  71. Hello! Thanks for these videos. I find them encouraging.

    I had rectal cancer a few years back. My surgeon removed my rectum and a bit of my colon, attached the end of my colon to the stump of my rectum, and gave me a temporary loop ileostomy. I could have gone directly to a colostomy bag, but my surgeon thought he could save my anus and put me back together later. The plan was to let the colon/rectum stump connection heal for a few months, then undo my ileostomy. However, I had a rough time recovering from the original surgery, so I wound up keeping my ileostomy for a bit over a year. Having an ileostomy was tough at first — very weird to see part of my small intestine poking out of me — although I got used to it in a few months. It was very talkative (bubbles and whistles and other noises), so I named it Mr. Bizzle. I had a lot of trouble changing the bag at first, and had a lot of leaks. I was using a two part system, with a sticky wafer attached to my belly, and a snap on, drainable bag. When I switched to a larger adhesive wafer, so there was a wider strip of sticky stuff holding the bag on, I had fewer leaks. After about 6 months, the bag was just a part of me. I'd tap it every so often to see how full it was, and emptied the bag 4-5 times a day. I did eventually have the ileostomy reversed. Some people suggested I not do this, since my ileosotmy bag was working well, and online research told me the outcome was a gamble: it might work, it might not. So I viewed my decision as something of a gamble. After my tubes were reconnected, was quite painful when food (and farts — I could feel every one!) started moving through my colon again. I had less pain after a few months, but my colon never really got back to work — it doesn't push out poop like it's supposed to, so I do salt water & baking soda enemas every night to clean myself out. My surgeon tells me I'd be happier with a colostomy bag, although I've been stubborn — I have so much hoped that my modified original plumbing would start working again — that I'm reluctant to choose getting a permanent colostomy. Decisions, decisions!

    Best of luck to everyone leaving their stories here. Hannah, good luck with your health and your decisions.

  72. I am curious if there is a stoma equivalent for peeing instead of pooping. I have pelvic floor dysfunction and I feel like i have pee really bad when i have tension in the pelvic floor. It makes it nearly impossible somedays to go out or do anything (even go to work) cause i am in pain and need to pee and be near a toilet but then when i pee it burns like mad. I have no imfectiom that the doctors could tell but i have hypersensitivity and pelvic floor dysfunction. I am currently on a waitlist for physical therapy so hopefully that will help when i am able to get treatment.

  73. I had jaw surgery last year (upper jaw was moved forward) and now I have to decide whether or not I want to have the screws removed this year. On the one hand this would mean another surgery, on the other hand I wouldn't have screws in which might save me from any future dental complications if I have to have implants or anything

  74. I have a permamnent ileostomy.

    I had undiagnosed ulcerative collitus for a few years, undiagnosed because it wasn't very severe and the doctor said it was probably just piles. But it suddenly started getting worse so I had a colonoscopy and was diagnosed almost straight away. I tried to live with the UC and the doctors tried a lot of meds but eventually it was so bad I had emergency surgery to give me a temperary stoma. I lived with that for a few years through a different illness which meant I was unable to have surgery.

    1) Which did you choose & why? Was it an easy choice? Or did you not get a choice?
    After I recovered from the other illness I decided to make the stoma permanent, I'd lived with it for a couple of years and was fairly comfortable with it and the prospect of going back to a more "traditional" method of excrement extraction did not appeal to me.

    2) What is your lifestyle/poo routine like?
    I change my bag every other day in the morning after I shower. I empty it between 5 – 10 times a day, sometimes it's not very full but I'll empty it anyway if it's annoying me.

    3) Have you had any complications?

    Not with the ostomy, I did have a seperate immune system based illness but I don't think that's common

    4) If you haven't had the second surgery yet, which way are you leaning?

    I have, see above 🙂

  75. But forever is just a succession of "tomorows"! I get the will to get to see your stomach though. I wish you the best of luck for that dificult decision.

  76. Love that people are talking about these things – great job Hannah (was lovely seeing other people’s opinions that have gone through these issues and holds more weight then just an information video)

  77. I've had UC for 25 years. I'm scheduled for surgery to have my colon removed on Dec 09. I'm leaning toward permanent ileostomy at this point, because the complexities of the j-pouch scare me. But, I have no reference for what living with a stoma will be like, other than videos like these. I like the idea of the simplicity of having one surgery for the ileostomy and removal of rectum and just be done with it. But the finality of it is a bit scary – no option for a j-pouch if I go for that option. At this point, I'm still thinking that permanent ileostomy is what I'm favoring. Big decision. Scary. Optimistic. Lots of emotions. Thank you for videos like this.

  78. Not only do you have a risk of J pouch failing and getting a stoma again because more intestine would be removed you can get something called short gut. I'm in your predicament too. I have a temporary stoma (colitis and colonic dysmotility) and have always said I never want to poo out of my bum again. My surgeon wants a reconnection though. Just had a flexi Sig and I have colitis back and the suppositories weren't working so I am using enemas currently

  79. Thank you so so much for sharing! I have been in my UC flare for over a year now and poop my pants about twice a month. I’m currently in the process of switching GIs, which is a pain in the butt. I’m starting to think surgery is going to be the only option soon and it’s really intimidating. Watching your videos on this really helps ease my nerves! ❤️

  80. (long story)
    I chose the j-pouch, after 9 months with a ileostomy (which I got after years of struggle with ulcerative colitis). It's genuinely been one of the best choices I've ever made. My stoma was also well-behaved and 'easy'-ish to live with (poo not too thin etc) which would make it more likely that the pouch would be well-behaved as well, as I understood. I was not very keen on having surgery again, but my doctor advised me to go for it. Biggest bonus: I can fully enjoy going out for dinner again, or just meals in general. My stoma started to produce when I started eating, being a very distracting feeling (for me). Also, sports were difficult for me. I do windsurfing, which is very difficult to do with a stoma (equipment is basically incompatible) but now, just a few months after the surgery, I've gone again and loved it!
    I have limited issues with toilets, especially not a fan anymore of 2 hr trainrides. Currently, I go about 4-6 times a day, but it's not always a good day. I've found that going before I leave my home is usually good enough. With my stoma I also had limited toilet worries, since I sometimes had a leak.
    About the kids btw, my doctor told me that the permanent stoma indeed has some risk related to pregnancy, but the J-pouch doesn't have that. He told me that this is because the uturus sorta leans on the rectum, and thus it is not supported well anymore after getting a permanent stoma. With the J-pouch, it will still have a support and people generally get pregnant.
    I think it's most important to find a doctor that's a super expert on this topic to reduce risks. I took this road with confidence and I'd recommend it 🙂 #notadoctor

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