My Life Isn't Better with a Stoma | Hannah Witton
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- čas přidán 15. 06. 2024
- I felt "healthy" for 10 years of my life before my sudden turn and need for surgery. So do I feel like my life was better before? Sort of, yes.
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Thank you for watching. Would love to hear your thoughts on this in the comments. What does "healthy" mean to you?
I haven't finish the video yet, but I wanted to give my opinion!
To me, healthy is just taking care of yourself
Eating in a way that isn't harmful to your body, adopting a positive outlook on life (mental health is VERY important) and mainting healthy relationships with others while remaining independant.
If you're chronically ill, I guess "healthy" is just "feeling like a person without my illness"
Sooo yeah
Hope you agree!!
Hannah, your feelings make perfect sense. Unfortunately I don't have a good grasp on what healthy means to me. Like you, I am chronically ill, disabled. I'm unable to work. My life is better than what it was but the med has caused massive weight gain. I want my body back. Make sense? I'm not ungrateful for the improvement, but as a recovered anorexic this is so hard! Sending you much love.
💛
Hannah Witton I don’t have a chronic illness but i admire you soooo much for being able to share your experiences and talk about your feelings.❤️ Im certainly not mentally healthy and i have Postural orthostatic tachycardia syndrome. I’d say being healthy would mean everything physical and mental being in working order.
Hi Hannah - I can completely relate to what you feel. I have FAP Polyposis, which has - for several years - been managed through the brilliant team at St Marks Hospital in London. Like you, I had years of perfect health, daily tablet to take and twice yearly check ups, but other than that my life and health was fantastic.
However, out of the blue the condition mutated itself against the drug, which meant I had to have a Whipple procedure January 2018, and then a permanent Ileostomy at St Marks this last February. The stoma has been all ok so far - but yes, given the option I’d go back to having no bag in a heartbeat. Ultimately though, if the Ileostomy wasn’t completed and my bowel left instead of removed, I’d not be here by the start of next year, so it wasn’t an option. I am very grateful as I have my life though.
Your videos have been a HUGE help, leading up to surgery too. I also use the Coloplast Sensura Mio, which is also a big help with the daily managing of the stoma for how good I’ve found the bag to be.
I think you can acknowledge that your stoma saved you from the illness and flare up but still regret having to deal with what comes with it. It does feel odd having both emotions but I think you're right in feeling both.
“However, as someone with a chronic illness ‘healthy’ isn’t a thing. Like it’s not even achievable.” Oof, that was so real.
When I was ten years old, I had an emergency surgery to remove my large intestine and get a bag. It was a temporary bag that I had for almost a year I believe. Then they created a j-pouch and hooked me back up.
Now I'm 34 and over the last 5 years, my Crohns disease has been getting worse and worse. I flare up for a month or two, (usually two) and then I'm fine for like two weeks and then flare again. It's like my whole life has just been one giant flare up........
I just had another surgery a little over three weeks ago and have another temporary bag. Because of all the scar tissue from all the years of flaring, it made it extremely difficult for the surgeon to create the stoma. It's a loop illiostomy and it barely sticks out at all. In fact it pretty much points down right into the edge of my skin. (I wish I could show you a picture of it...)
It's been super frustrating. I am constantly getting skin rashes because the stoma outputs right against the opening of the wafer, and because I don't have a large intestine, the output is super liquidy which makes it really difficult for the wafer to stick properly.
Anyways, I totally get how you feel about people thinking that I must be doing so much better and happier now that I had the surgery, which just isn't the case.
Sure, I'm not running to the bathroom 20+ times throughout the day and night and the rashes cause by the nighttime accidents, but seriously this is not the outcome I or my surgeon was hoping for.
For instance, because the stoma is so low and the liquid output causes the wafer to not stick correctly, I have to use the appliance belt which has to be super tight to pull the wafer down onto my skin to make a seal. But my stomach is so sensitive that the tightness alone really hurts my guts.
Alright, well I realise I'm doing a lot of ranting and this was a long comment, but I really enjoyed your video and wanted to share a bit of my story.
Thank you so much for sharing your story and letting me know that I'm not alone.
(Now I'm off to watch the rest of your videos)
I would add a prescription pro-biotic. I use Visbiome. It really helps as an adjuct to my Asacol. Stay up, Hannah. Love your channel.
I’m one of the people that woke up in recovery with a totally unexpected ileostomy. Mentally and physically exhausted. Surgery was one month ago. Listening to you makes me feel better even though our situations are not alike. Thank you for posting and know that there are people out here with new ostomies that are watching your videos!!
Hey Hannah! I found this so interesting! I’ve just written my dissertation on how kidney transplants are seen to be ‘a gift’ and massively improve life but actually can make life so difficult and complicated! There comes medication and side effects, a new body, new assumptions and expectations and a whole new attitude! Kidney failure can affect everyone differently - some people can be bed bound, some don’t even notice! Health is so unique!
I just came across someone on another platform who had renal failure at a young age, had a successful transplant, and then had bipolar flare which caused them to come off their meds and fail the transplant. The guilt and awfulness is so rare - Transplant organs are an obligation and burden and blessing all at once.
It sounds like you’re struggling with the transition of going from an able bodied person to a disabled person. And it also seems like this is why you feel guilty. Because no one wants to say that life with a disability is worse, in case it gets conflated with disabled people being lesser/not having full lives etc etc. This is something I struggled with when I found out I had narcolepsy. I am still depressed about it, tbh. I wish my life was not this way. But I am working with a therapist and hopefully I will be able to accept it better.
Wait i didn't know people with stomas are disabled? Once they recover what can they not do that other people can do?
@@garybaker466 also my thoughts…I have a stoma and I’m pretty sure I’m not disabled. I actually feel more able than before I got my stoma!
Having a stoma is not a disability. Its only a disability if you let it be. Its all about mindset. I have a stoma and have made my life as normal as can be by changing my thinking on how i see the bag and stoma. To me i dont see it as a disability because if i didnt have it id b in lots of pain and stuck at home.
Hi Hannah! I have Crohn's, but no stoma as of now. I completely understand what you mean by thinking of yourself as "healthy" when you are in remission and actually talking lots of medications. Sometimes I can even forget I have a chronic condition. Going from the way I am now to a flare and a stoma would be emotionally devastating, even if it is lifesaving. Being grateful for your life and being grateful for your stoma are two different things.
P.S. You have helped me understand that if I need this surgery eventually, a happy and fulfilling life is still possible. Thank you 😊
Omg this. I know this is late but, i have been fine (with medication) for over a year, practical remission from crohns (i know only for a short time). I am currently experiencing a flare, which absolutely sucks, and i completely forgot how useless i feel and how little i can do during a flare. Its ridiculous. I really hope i dont need a stoma at some point, i know that i will struggle with missing my life as it has been for the past year.
Imani Barbarin tweeted something similar to "you can hate the disabling condition and still love yourself as a disabled person," which I definitely needed to have affirmed by another chronically ill/disabled person. Passing along in case it's helpful for you/viewers too. I think this concept is definitely applicable to people who identify as chronically ill but not disabled as well.
Hi Hannah, you unpacked allot in this video. I HAD a stoma. I was having intestinal pain, and saw a Doctor. Well one week later woke up after being a coma, with a stoma. I was healthy all my life. In my 50s. After 9 months, I was lucky to have a reversal. I watched your other videos on your life with a stoma. I think I remember you saying that some structure of your intestinal organs had been left intact for the possibility of reconstructing your colon. Not sure if that is still an option. But is so, you want to give that some consideration. Check with your Doctor and see if they can work something out. You are young and are so upbeat. You ooze positivity and enlighten people. I appreciate your videos. Thanks for posting.
You did a really good job explaining your experience. I hope it helped you to talk about it and that comments from others help you feel less alone.
I thought I may be the only person feeling this way. I had surgery for temporary ileostomy with j-pouch 11 years ago. During reversal my bowel was perforated and I ended up with the "temporary ileostomy" I have now. I now have PTSD due to the emergency surgery and complications, and am awaiting surgery for a permanent ileostomy. I miss my colon despite the fact I had to wear incontinence pants to go out. I felt more in control and always had a plan. My ileostomy is very high output and I constantly worry about catching viruses that will put me back in hospital. It's hard to stay hydrated and I'm more afraid to go out now than I felt before surgery. I constantly feel guilty about feeling this way, but I miss my old body and life and if there had been a medicinal alternative I would have chosen it. Thank you so much for sharing.
Hannah, never feel guilty for having these emotions. They're totally normal. It sucks that this is the hand you've been dealt, and I don't think anyone would ever tell you differently.
If it helps, you could try being honest. "Well, my last flare-up nearly killed me so it's definitely better than that, but my symptoms weren't constant so I do miss being able to live a normal day-to-day life doing whatever I wanted."
Three years ago, I got Crohn’s and although I am officially in remission, I still can’t work, because of chronic fatigue and all kinds of chronic nastiness 😬 Luckily, my hospital provided me with a psychologist who’s specifically trained to help people deal with illnesses and disabilities. After more than three years, I still struggle a lot, but I feel I am not comparing myself to the old, healthy me all the time. I feel that’s an important part in the process and I hope you can get there, too. I still feel my life kind of sucks now, but I learned how to enjoy it anyhow, without constantly being sad about the healthy life I had lost. All the best to you, Hannah. Your videos help me so much!!!
Good on ya. Having people telling you how you should feel about a medical condition is not fun, especially when it's life-threatening and debilitating (and carrying meds and shit everywhere is a bit of a pain too). I know that feeling when you want to scream them and go "no, actually I'm not enjoying myself having this, thanks very much" but having to nod and smile instead. ARGH! I'm glad this popped up as a suggestion for me, I think it's really admirable that you're very committed to honesty for the sake of opening up discussion for other people and you 100% shouldn't feel guilty about sharing, everyone deserves support, I think that takes a lot of bravery and strength. So thank you :)
I'm also glad I saw this for selfish reasons, a few days ago I ended up in hospital for an allergic reaction, got off lightly though, all I have to deal with is a few pills, but it gave me a fright, and I'm not looking forward to the attitude I'm going to get when the long weekend ends and my family start spreading the news.
This video is SO conflicting for me. I did not elect for surgery, it was emergency like yours and I wasn’t even told before that a stoma was an option they thought it was just going to be a tiny resection but ohhh no it was a big surprise! I am still super glad I have the bag because of all the long term effects of the medication that would have killed me/ shortened my life before the crohns did.
The bag isn’t so bad 99% of the time, but you do have to adjust your life a little and yes be a bit grateful for the things you can do now that you can’t in a flare up.
I do think you can’t think of yourself in remission as a ‘healthy’ person, because really you weren’t.
Always happy to chat if you want to, I completely get your point of view!
I don't think anyone, stoma or no stoma should assume in the first place. No "you must be this or that". The thing is they should be asking "How are you coping?" And that's it. But, it's how people are, thinking that their own experience makes them the most competent to speak about anyone. And they mean well, usually. Please don't ever feel guilty for anything like that. You give so much to the community, so be proud of yourself and allow yourself to feel.
I became an ostomate at birth and I just turned 30. It is all I know and I dont know life with out it. I for sure get down on the fact that I cant related to it being this positive life change. Sending my love and do not feel guilty!
I think it's so brilliant that you've made this video - there must be so many people who are in your position (I know people who went to surgery only a few weeks after being ill). I cannot imagine what it must've been like! I had emergency surgery as well and I know the first few weeks I had that same denial but because I'd been so ill I still saw it as an improvement. Thank you for making this video because you'll have helped so many ostomates (I know a few people who are in a similar position to you who have really appreciated this video!)
The whole concept of healthy is really jarring for chronic illness isn't it!
This was a fab video thanks Hannah. I'm autistic and have suffered with OCD since I was a young teenager, and have had a few severe OCD episodes lasting for months to years. I'm currently undergoing an OCD relapse and so I've recently been thinking about how you are made to adjust your concept of "normal" and "healthy" when you have a chronic condition, as even when I'm in "recovery" I'm still taking medication, doing self-administered exposure therapy and probably still have more intrusive/disturbing thoughts than those without my condition. Thanks for opening up about how although it saved your life, having the surgery to get a stoma there are still downsides!
Hi Hannah, I just want to say thank you for sharing your experiences online and raising awareness. I work in the NHS and work with patients following stoma surgery (elective and emergency) but only see those people for the brief time that they are in hospital after the surgery. I've enjoyed watching your series following up your long term experiences and I think it's great that you're choosing to share this part of your life online. I'm sure it's helped many other people too, and hopefully helped you to feel more supported also.
thank you for opening up about this! you've been such a powerful representation of the invisible illness community, and i appreciate it so much! also, thank you for the hand-written captions! it really means so much.
you're feelings are totally valid! i started having seizures in november and ive had a diagnosis and medication for about a month now. people will say to me "ah things will get better" but im still having seizures, im taking medications multiple times a day and it genuinely feels like my life is worse now. but i guess people are seeing me as how sick i was since november and im seeing myself as how i was before (maybe cause i can't remember shit when ive had a seizure lol).
but idk it's all so fresh so im still not coping with it yet
So sorry to hear of your Ill health. Sending u the biggest hug x
@@sarahmorley1031 aww thanks, so sweet!
I'm a part time mobility aid user (cane or walker, depending on the day) and I always struggle with feeling "more disabled" when I'm using my aid even though using my aid makes me able to do things, whereas choosing to not use my aid means I can't leave the house for very long. So this is...a mood.
I completely understand you!! I was hospitalised around the same time you were and was diagnosed with Crohn’s disease affecting both my stomach and my small intestine. I was so so so I’ll while waiting for a diagnosis to the point where I nearly had a heart attack because my potassium was so low, my heart was really struggling. While I’m on a life saving drug now (Humira) and I am so much healthier than I was while I was in a flare, I really wish I didn’t have the disease. I went from being the “healthiest” I ever was (running every day, eating really well and my mental health was the best it has ever been) to the sickest I have ever been. IBD is a real struggle but props to you for normalising it Hannah!! ❤️
Feeling you, same thing here but I have UC.
I have a chronic severe mental illness that started when I was 19 years old. The two things that helped me deal with the fact that my life was objectively better before is 1) admitting that I can’t change my situation. This is normal and okay and I’m not going to die and I’m going to still be loved and lusted and reach my goals. It will just take more time. And 2) I have gained things out of this experience that I would have never otherwise. I was forced to form a very close relationship with my parents, learn to identify and choose truly good hearted people to be in my life, appreciate the day to day experience of being alive as opposed to gaining satisfaction from crossing off big ticket bucket list achievements, gain a new level of empathy and the ability to stay positive and internally at peace even when facing hardships. So to summarize, I feel like I’ve stopped struggling with my post mental illness life through: understanding that I need to accept that my mental illness can be debilitating, knowing that I can do things to control how out of control it gets, and focusing on the strengths that I gained out that I wouldn’t have otherwise.
Alicia Wei my experience with mental health is the same.
This video made me cry, Hannah. I have a chronic illness called PoTS, which I've had for 8 years. 2 years ago, I was bed-bound and couldn't leave the house. Then I got referred to a top neurologist who has helped me massively, but I'm still unable to work a normal job etc, but everyone tells me how lucky I am, and how much happier I must be...and honestly, I still feel just as unhappy because my life is still affected massively - so I totally get the guilt that comes with "getting better" about being "healthier". It really is so wonderful to feel less alone after watching this video - you're truly an inspiration ❤
Hannah rambling and being her own therapist without realizing it !!
We are here for you babe😘
THANK YOU SO MUCH FOR MAKING THIS VIDEO! It’s great to hear your story
I've had crohns disease for 17 years. I totally get where you're coming from. You learn to adapt to your normal, and although you still had your colitis, you felt "normal" and got on with life. I was the same, and the unpredictability of it is so frustrating for me now. I've developed bad symptoms and been struggling on for a few years now, and medication always came to my rescue, but now, I have had everything available on the NHS, and they have all failed and I am officially getting surgery. Everything must go. So big adjustments will be coming for me too. Your videos help massively and you come across so positively. You pointed me in the direction of other youtubers and that has helped me with my research which is so reassuring. I'm glad I'm not as much of an emergency as you were. I have at least a little time to learn and adjust. So dont feel guilty for how you feel, this was sudden for you, and that is a traumatic experience. It is natural that you would have a different path. Thank you for this and your other videos, xxx
I just want to say thank you SO MUCH for sharing your life in such an honest way!! It’s helped me feel more comfortable on all the emotional rollercoasters that come with chronic illness.
I'm very happy that you started speak about it, because I think that it's what we need. Saying that life with a stoma is better is not exactly true. I also have ulcerative colitis and have a flare up two years now, probably everybody with a UC can imagine how exhaustive it is. When you loosing a hope that will be better sometime. I was considering a surgery in my mind after I heard about you and your channel last year (I truly cried because of what happened to you). Anyway when I did a research about it, there were some people who want to warn people against thinking about stoma surgery as a solving all the problems with UC, because it's not. Many people can feel even worse than before the surgery and have lots of complications after that. Of course many times the surgery is saving a life, but shouldn't be considering as a cure for a UC. I wish you and everybody with UC lots of strength to survive and good luck!
The other thing - I know, giant comment and then I have more to say! - is that I think a lot of us, when we got our stomas, felt like we had a responsibility to be open about it to decrease the stigma. And obviously that's great - you are one of the people who helped me to feel I could cope with this thing! But I think that can have a cost for us because it does make it harder to acknowledge that getting a stoma is not anyone's ideal life change, and it can indeed feel like we're "supposed to" have the feelings that go with being out and proud about it. But we're emotionally complex creates and it's good to see videos like yours acknowledge that.
This sounds like an experience closer to cancer to me. a relative had no symptoms but discovered they had bowel cancer after a screening test. Treatment followed including either a colostomy or an iliostomy, I'm not sure which. I wonder whether cancer communities might have an insight that is more relatable in this particular respect?
I've just found your channel and i am loving it!
I have a chronic illness, I was diagnosed at 11 and ended up needing 2 bowel reactions within 10 months of eachother, they wanted to put a aroma on then but I was terrified and asked them to do their best and I am very grateful that in the end I haven't had one fitted. However, I suffered with flare ups and symptoms for years afterwards however never as extreme as before the operations. My illness "went in to remission" 3 years ago, I'm 24 now but still suffer with all of the same symptoms. Unfortunately the specialist hasn't found anything that has fixed me yet, they think a lot of the pain is due to nerve damage which, for that, there isn't much that can be done. It's just something that I have had to learn to work my life around. That being said however, I find gratitude and happiness in the fact that I truly appreciate the good days. I think when we are well and healthy sometimes we don't appreciate it enough, as it is just a given, but when you've been very poorly you can find positives in every day, especially the good ones and you make the most of them when they come. I hope that makes sense! 😅
Thank you for sharing your honest feelings! It's nice to hear a different experience.
Thank you for sharing your complex feelings on this! These experiences are not always cut and dry. And I think it's important to share those complex feelings so others going through similar struggles know they're not alone and so those of us (like me) who didn't even know what UC or a stoma was before your videos, can learn how to better be supportive and knowledgeable about what our future friends, colleges, family members, or even selves could be going through.
Thank you... just thank you for putting a voice to everything that I am thinking/going through right now. Just became an ostomate in January after 14 years of being a "healthy person" with UC. I can't think of a better phrase to describe my feelings about it better than "it's complicated."
I'm scheduled for a bowel resection surgery in 5 days. They marked a spot high on my abdomen in case they decide during the surgery that I need a stoma. I was incredibly unprepared for what the ostomy nurse showed me and told me. I have had 4 previous abdominal surgeries so alot of scars. Maybe that's why they marked a high spot. I cannot wrap my mind and what "could" happen on Tuesday. Everyone (doctors and family) tells me I must have the bowel resection surgery. Everything in me wants to cancel and take my chances. The doctor told me I have a chance of coming out of this without a bag and if I put off the surgery it could have to be done in an emergency situation and I have no choice.... he said I could end up with exactly what I don't want if I wait. Thank you for doing these videos... You're adorable and so REAL in the way you relate your thoughts and feelings. I totally understood the guilt thing you mentioned in one of the videos. May the Lord bless you and help both of us count our blessings! Warm regards, Georgette
I'm unfortunately one of those unhelpful people who had an ileostomy whose life has drastically improved, but i can totally understand where you're coming from. for me, it would be like people asking me whether life was so much better having a stoma than before i'd ever been diagnosed. which, duh. going from being healthy to dealing with something so huge is never going to be easy, but your feelings are totally valid and you've helped me so much by helping me be less scared about my surgery in the lead up and giving me optimism about my recovery, so thank you. i hope you can also get the help you need!
Thank you Hannah for making this video! it's good to hear people's experiences that as you said go against the norm narritave.
I've got crohns disease and thought I would mention that I've found a lot of articles in the media that imply their IBD has not stopped them from 'leading the life they want' narritave.
I find this soo unhelpful because I'm not in a place where I can relate and I feel my IBD has done nothing but stop me doing any activity that's remotely tiring and I've gone from a yes person to a no person.
So I honestly think hearing about other people still struggling and not being okay helps me to feel less alone and frustrated that I've not bounced back.
Thankyou for pointing out the complexity and individuality of this rollercoaster of IBD we're on.
All the best x
I'm loving how your channel is evolving - videos like this are so important and whilst you may not have imagined creating content like this a few years ago, I'm sure that it means a lot to so many people 💙
I have a stoma too. I have Crohn’s disease. My health failed last year. I almost died. I was in remission for years and years too. I am going to get a reversal in the next few weeks. Keep me in your prayers.
Thank you so much for talking complexly about illness and disability. I don't usually comment as I don't have a chronic illness, but I really related to your feelings of guilt as I experienced this when I had cancer last year. As you say, how people respond to treatments/surgeries is complex and while I felt super grateful for the treatment I received last year, how "lucky" I was hammered into so much that I felt guilty about having negative feelings about treatment. Obviously this was a very different situation, but I really related to what you said about people projecting ideas/feelings onto you and how it can feel so uncomfortable. I hope this makes sense, and thanks again for opening up important conversations!
*hammered into me so much
Thank you for telling us what's going on with you. I am going through a similar experience with people assuming I should be feeling better but I'm not. Friends, family and doctors all say it to me "you must be feeling better by now."
As far as dealing with guilt... I'll let you know when I learn how.
Thank you for another great video. Thanks for making me feel normal for a few minutes. 😊
This is so important and valid. I've only ever known surgery from 1 years old and that's why when people ask me that question, it never really makes sense because how do you compare to what you don't know? All I know is I used to be in pain daily, and I'm not anymore so THAT is why my life is better but would I choose to never have had a surgery or my scars, who knows? I will never know the other option, I don't know who I'd be without them and frankly, it's a waste of my time to entertain that idea because it will never happen. That guilt is really common - survivor's guilt, and you don't have to always be grateful! You can also be grateful AND angry about it! xx
The relationship you described with your condition is really relatable to me from a mental health point of view. I think there's a big intersection between chronic illness, disability, and mental health conditions, in regards to working out what your personal definition of "healthy" is. I don't think it's talked about enough. Thank you for this video!!
Interesting to mention how healthy you felt before the whole illness and Stoma took place. I I too was extremely healthy in body and mind - watching what I ate and drank to be fit, then Crohn's came on after a stressful time with work and caused problems for years. I'm now positive again with a Stoma! I've had it for 6 years and have just started CZcams videos into our community. You are a great inspiration and start for all to get their message out. Thanks
I've only recently become aware of your channel and those of the "Squad" and I am devastated to learn of your illness. I am a partner of a woman who had colorectal cancer …. who nearly died of sepsis before her stoma (called Stomy), and lived with her stoma for nearly 4 years while she battled the secondary cancer. She passed away recently. Although you don't have cancer (thank fuck for that), your journey is still a battle and the stoma is a constant annoying negative reminder ……. yes, you are living your life differently, but you are doing an incredible job of publicly documenting the process to relieve the stoma stigma. I know of some of the trials and tribs you are going through and wish you all the best.
I have had UC for 23 years now and when in remission I still class myself as unhealthy due to the fatigue etc. Healthy to me is someone who has relatively no chronic illnesses who can lead a normal day to day life etc.
Hi Hannah, so good to hear this. I've been diagnosed with UC for 4 1/2 years now currently managing with shed loads of medications/treatment. A stoma seems like my worst nightmare and every time I have a flare up I panic like crazy that this is the one! It's nice (and scary!) to see someone speak so openly about what having a stoma can be like. There is a lot of positive things out there about a stoma which I believe are too good to be true!! "Healthy" to me is a day where I complete everything I set out to do without noticing the pain! :)
I relate to this. I have an invisible illness too. Thank you so much for your honesty and openness about it 💕
Thanks for talking openly about these problems. After two years of listening that I have IBS, I was finally diagnosed with dolichosigma. They cut out 50 cm of my colon, and even though it fixed some problems, I still live with pain. I keep hoping it will go away with time, but one thing is for sure - I will never be the same again.
You asked so many questions at once. Lol. You are darling 😍. I just got a stoma. (Ileostomy) Monday will be 2 weeks. You are one of the CZcamsrs I watched when I found out before my procedures. Unfortunately my chronic disease was cancer. For several several years and different kinds, but the last 3 years anal cancer. The radiation has changed my body, in ways I keep thinking I should have been told about, but wasn't. The extremities of the side effects of radiation and chemo, kept me chronically ill for three years. So ill, that during that same time I had 17 surgeries. I always feel guilty for any negative thoughts I have about my new me or complaining about life and my new challenges. I am so painfully aware that others don't get theses opportunities, procedures or that they don't always work or live to receive them. With lots of procedures medicine wide. However, I still give value to my experience and my feelings along the way. I am also always grateful. I am also always a human and with that I am allowed the human experience. Grieving is part of that. Yes, you are allowed to say my life was better. Now, you can move forward. Still missing the you of the then and also beginning to appreciate and love the new you and figure out how to continue to navigate it with the positive energy, love, understanding and intelligent discussion I have been drawn to in you. Move forward in your journey and keep feeling and expressing your thoughts as you did before. Keep them real and keep coming out stronger 💪💪💪. That's what I tend to do. I have been on my medical journey since I was 13. Cancer since 24. I am 49. I was blessed with a baby. He is now 27. Will be 28 this year. 👵 Feeling my age, remembering my yesterday's and planning my tomorrows. I fill them with as much love, time, reflection and fun as possible crazy fun. Memories fun. I wish you well my dear. Until the next time I am draw to respond to one of your videos, I also wish you patience with yourself. We are go getters. That's okay. In fact it's great. Don't ever apologise for living your sickness your way. But know it's natural to feel guilty for some of our thoughts.
As someone dealing with chronic illnesses, the closest I have been to so called "healthy" is on my so called "good days". However, even those are quite relative in regards to actually being good. Usually, it just means that my pain and such is less overall than other days. Those "good days" don't always last for an entire day, in fact, often it is only for a matter of hours before the pain and such returns to much higher levels.
I would like to share with you,Hannah,the mixed emotions I have about my eye surgery,necessary to save my sight.In January 2010,I had a minor stroke-in my right eye,which peeled the retina..I was too late in getting to surgery,and even though they repaired the retina,the surgery was not successful-the repair failed after only a few months.Then in 2015,I had another stroke,same thing,left eye.Only this time,it split the retina in 5 pieces! I had to have emergency surgery within 5 days,or it could not be saved,I was told.(something I didn't know the first time,or I would have sight in the right eye now)Fortunately,thank GOD, I found the top retinal surgeon in the country(U.S.) was right in my own city,with one of only TWO yellow laser state- of- the- art machines in the world-the other one is in Germany! It was successful,and still holding,nearly 5 years later! And I can SEE! even if it's only one eye,it's sure better than being blind! BUT-the drawback is,because of the 5-way split,and the welds necessary to hold it together,I lost a lot of detail,and where the welds are, obscures my vision.Not so noticeable in general vision,like driving,but when I try to do close-up,or detail work with tiny objects,which is MOST of my work,it's woefully inadequate and maddingly FRUSTRATING! And,what makes it even more difficult,is that a cataract formed ,due to the surgery needed,and I had to have a new lens put in.I was formerly nearsighted,which suited my close-up work just fine.But the new lens had to be a single focus,and it was geared more for farther range,than up close.Meaning anything closer than 2 feet is blurry now..Plus,with only one eye,and thus no depth perception,trying to position things is almost impossible.And reading is terribly difficult,as well-the letters look like you tore up newsprint,then taped it back together,with the letters all jagged and mismatched.BUT-at least I can see.I was blind for about a month until the surgery healed.And I'm SO glad I am not blind now.ANYTHING is better than THAT! But,it's still a mixed blessing.
P.S. There is no guarantee on how long the eye will hold out-it COULD fail at any time,particularly if I have another stroke.Or bump my head,or my eye too hard.So,I just hold my breath,try to be careful,and take each day as it comes,trying to enjoy my life,and my sight-such as it is--for as long as I can.
3 years ago I was diagnosed with UC. I haven’t been able to control it for 3 years. I had a colonoscopy to confirm the diagnosis and was given suppositories and sent on my way, I’ve been changing doctors and demanding to see a specialist to get this under control because I am struggling mentally and physically. I also have PCOS, depression and diabetes so I haven’t lost weight, I don’t want to go on steroids because of my weight gain and my depression. I have two young kids and I struggle every day to be a mother, no matter what I eat or drink I just get worse. Every time I’m on the loo Im crying in pain because I don’t want to keep doing this, I would love to have my colon remove so I can increase the value of my life and be the mother my children deserve.
Seeing your perspective has opened my eyes to what could happen to me and as much as I wish to be “better” that there is also a lot more responsibility there is with having a stoma, that when I do have my next colonoscopy that what if I wake up and have a stoma.
I feel that before getting UC I was healthy and I would do anything I go back to being healthy again.
Totally understand your points. I'm new to all this. Emergency surgery too. I was told mild chrons so didn't even really know what a stoma was as it wasn't a path I ever thought I would go down. Turns our UC and bowel disintegrated. Emergency life changing and saving surgery. I haven't even decided how I feel about the stoma as open wound (left open no stitches or staples) and still not healed 16 weeks on. I feel on one hand the surgeon saved my life and should feel grateful and on the others I feel butchered. Life was better before for sure but wouldn't have life without the bag. Don't want even if poddible a reversal as I can't think of anything else than another operation.
I understand that feeling of being on my own.2019 hasn't started out being one of my better years. I have tried reaching out, but I think maybe I'll be needing a therapist to walk me through emotionally. You keep doing what your doing Sweetness. You gaining in leaps and bounds. So happy to see someone having better days now. Your channel watchers are so happy for your progress.
My mum was a somewhat healthy person. At the start of 2020, she had an issue vomiting after every meal that the consultants couldn’t figure out. During the first UK lockdown last year she got really bad very quickly and I rushed her into A&E. They told her she needed an ileostomy to save her life. None of us had ever heard of a stoma. We knew nothing about the metal and physical adjustments needed. Almost a year on, it has been hell for her. She has to change the bag up to five times a day - very high output and a bad scar situation means her bags leak ALL THE TIME. She’s hoping to have a reversal in a few weeks time but there are big risks with that too. Thank you for sharing about your experience. I’ve been bingeing your videos and it has helped me to better understand the struggles my Mum has been having. ❤️
Thank you for sharing your story. I have had UC for four years but I constantly hear my thoughts tell me you’re not healthy your chronically ill no one understands BUT after about two years of doubt I finally accepted the disease. You are strong and being honest makes you vulnerable and real. You are saying everything most people with out condition think about. I constantly think about how much I wish I could go back and somehow prevent getting this disease but thinking in the past only drives you down unnecessary paths.
Maybe it's different in my case since I have mental illness (clinical depression), but I've been stable for a few years now. I remember exactly what it was like when I was at my lowest points and wishing every moment that I could die. I remember that agony and am weirdly grateful for the perspective it gives me. Despite my current stability thanks to tons of therapy, a strong support network, and mountains of antidepressants (that I've been tapered off of for over a year now under medical supervision), I still consider myself to have a mental illness because it can come back at any time. Clinical depression doesn't have to have a reason, unfortunately. I guess I'm in "remission" from it?
My life before depression was great and my life after depression is great, and I'm grateful to be out of the thick of it, but I still wish I'd never been depressed in the first place because it stole 5 years worth of experiences I'll never be able to replicate.
Does any of this make sense??
I've 'had' depression since I was about 9.
I've had the best mental health year of my life.
I feel happy. But I still say I have it because take away my anti depressants and it'll slowly creep back in.
I lost most of my childhood and teenage years to untreated depression and i'll probably be on medication for the rest of my life, but right now i'm in a good space. but i still have chronic depression and i still have to be very careful in daily life to avoid triggers. i get your point about wishing you didn't have depression in the first place, but i can't imagine a life like that. all i can do is try to do now what i couldn't before, and try to live my life in a way that keeps me as happy and healthy as possible
Hannah, I think your one of the bravest people I ever seen. I have never had any chronic illness but I still listen to your story as it inspires me to stay positive.
You have my sympathy so much, and your experience is so valid. I can relate to this, with mental illness. Which is very different from your situation - of course. But some things are similar. Here's part of my story:
But yeah, most of my life I've felt fine and healthy, and then I've had a few anxiety attacks once in a while, which have been bad, but I was stil able to deal with the attacks. But since I started my 20s, I've had a couple of periods where my mental illness has been so bad, so friggin' bad, in a way that has kinda traumatized me. It has happened a few times that my anxity has made med feel like hell for weeks, where I couldn't do anything, including eating, and just had to stay in the sofa feeling so terrible every single second without break. And now I'm better again. So much better. Yes, my life is better again, but I don't really like when people are commentng that, like "You look som much healthier", "Glad to see you're doing well" ++. Because the truth is, I have to live with the fear that I can have periods like that again. Most probably, they will come. And that's become like a huge part of who I am. I'm currently in uni, and I love uni and being a student, but I'm constantly thinking my illness might attack me when I try working a normal job again, and that I might not be able to make the money I need to pay my debts and live a normal life. So yeah, healthy, but at the same time sick. It's there all the time in the back of my head.
Hello Hannah, i have now 3 weeks my illeostoma. I had collitis ulcerosa, i had almost never complaints with my disease. But they found poliepen with cancercells. I understand your feelings because i think also the same. (Sorry for my bad english)
Greets from the netherlands!😘
Hello Hannah, I'm new to your channel but not new to my stoma. I was diagnosed with UC seven and a half years ago and had my colon removed 7 years ago.
Thank you so much for this video and sharing how you feel. My surgery was lifesaving and I am grateful for that but I do miss my pre stoma life.. It most definitely is complicated. I am not going to go into it here but it has not been a straight forward journey since my surgery.
I think your description of your feelings probably is the most 'normal' way to feel. Certainly one of the most honest descriptions I've came across and I thank you for sharing that honesty.
I have a brain disorder that, for me, requires a shunt to drain excess fluid. Right after I was diagnosed I had that shunt placed, and it worked for 7 years with no issue. I would’ve probably described myself as cured, I definitely didn’t FEEL like a chronically ill person. When my shunt malfunctioned, that started a series of subsequent malfunctions, revisions, and a general decline in health that has lasted for years. It was such a struggle going through that transition. I had always known this would be chronic...I never knew it would be LIKE THIS. I have gone back and forth (and back again) through acceptance, denial, forgetting, etc. It’s such a hard thing to settle into, and no one talks about being in ~this~ phase. I really appreciated this video! We’re out here!
I deal with chronic illness, with "healthy" remission periods and unhealthy periods. Right now I'm doing very well, and people around me are expecting me to be happier than I actually am. Don't get me wrong, I am happy, but acknowledging that I'm healthy always comes with the qualifier "for now," and people don't seem to like hearing that. They prefer the narrative that I've finally conquered my illness, as evidenced by how well I'm doing now. People try to encourage me to be more positive, and that makes me worry that staying vigilant for a downturn means I'm choosing to be overly negative, or ungrateful. Or worse, that my illness has beaten the positivity out of me. I know this isn't true, but sometimes it's a struggle to remember that. So glad you're tackling this topic!
I hope you ended up finding a form of therapy that helps you with this. I relate to this video, and therapy has helped me greatly.
To me, healthy means not having to worry ones self about the way their body reacts, functions day to day. Healthy means getting to exist on autopilot without that voice in the back of the head, and a tightening of the chest that says "what if". I'm lucky to have a bowel condition rather than a bowel disorder, but I very much empathize with much of what you're saying. Being not healthy is the pits, especially when, depending on the day, we exist on both sides of that "healthy" line.
I currently live as two people. One version of me when I'm not in a flare up, the other of me exists in one. The healthy me holds myself to the expectations and standards of a healthy person. Then a flare up happens and I have to forgive myself for not being able to meet those standards. Healthy me has to make safe, hard decisions just in case the flare-up me takes the reins that day. Because it can be any day.
It took me a while to understand my anxiety stemmed from my living with my condition. Therapy has helped me figure that out. I hope yours brings you revalations also.
You most definitely are NOT alone. My stoma literally saved my life because of complications from radiation I received for cancer. I was told that my quality of life would greatly improve. I suppose that is true if the meaning is that I am still ALIVE....however, LIVING is hard and quality of life is almost non existent. I feel tremendous guilt....I mean it saved my life and I should be happy right? But I am socially anxious now...always afraid I will have a leak or strange stomach noises will occur in public. I spend a lot of time alone because of that. It makes me angry and depressed to be honest, as I have always been a strong outgoing and social person. So yeah....I feel ya. Thank you for being so honest and thank you for what you do.....you are an inspiration.
The sudden precipitation of your UC and the need for a stoma is more similar to someone who had abdominal trauma who needed a stoma - a sudden, unexpected change that required an unplanned lifesaving intervention. This is a different timeline than people with progressively active UC who ultimately got a stoma (and got so much better). The difference between an elective or semi-elective surgery and an urgent/emergent one is massive - you absolutely nailed it.
*also, disclaimer - stomas are not made casually by surgeons. They are made to save a life, with long term health and safety of the patient in mind.
I feel like a part of coming to terms with a massive change you didn’t ask for is acknowledging that you wouldn’t have chosen it. There’s a lot of guilt that can come with that, like feeling ungrateful, or like you’re considering your stoma as something unwanted, or feeling bad for feeling like a lesser person for no longer being “healthy”.
I am grateful for you making this video because people don’t talk about it, or how you can feel conflicted with your feelings about it.
Said “feel” a lot there. Oops. 😅🙈
First of all thank you for having this vlog and being so honest.
What does 'healthy' mean to me: Days without pain and feeling like I can do anything I could ever do. I'm disabled so I can't and I know that. If I can FEEL like it, though, I'm having a damn good day.
Thank you for acknowledging that we have to deal with the negative feelings. I've been sick for 26 years - diagnosed (kinda) for 20. I remember what it was like not dealing with illness all of the time. Looking back I can see I was always dealing with the symptoms but I didn't know, so I didn't have this burden. Would love to have that easier life back. I remember and I mourn it.
Love that you're talking about this, thanks for sharing!
Not the same but similar - I've had two surgeries (hip and back), and both of them were preventative rather than improving anything. So I become 'worse' after each one, never fully 'recovering', for example I stopped walking after my hip surgery (but my disability is progressive, so I would have stopped walking at some point anyway). For me it's always been important to keep that big picture in mind, and how much worse I would have been without the surgeries - but then I have always very much been disabled, so although it was different I didn't have a drastic shift from 'healthy' to sick. Though that doesn't mean that I don't sometimes feel resentful, and I've found that it's really important to allow myself to feel, as long as I'm not consumed by it. It sucks, and that's it sometimes, and that's okay.
With other people, in my experience, it's really important for THEM to hear that I'm 'okay', and in their mind I go to hospital and get surgeries etc. to get better, not just to maintain or prevent. I think the full life of 'chronic illness' is such an alien concept to most that I don't really bother trying (unless we're close), and I just nod and say it's better :P So again, thanks for doing the heavy lifting and talking about this sort of thing.
My girlfriend has and I've always been kinda very scared about it being severe enough to warrent a stoma. So thankyou so much for you realism and honesty, it really does help
As a young person with a chronic disease that resulted in multiple surgeries with a butt ton of complications, I hear you! I really love your perspectives and hearing your thought process when it comes to these tougher subjects. I’m also not sorry I had surgery - it saved my life. But it left me with chronic pain and multiple challenges. It’s impossible not to sometimes long for the days when life was easier. I sometimes see my life as a before and after, as I drastically changed as a person (for better or worse) as a direct result of my surgeries. Much love to you, Hannah. ❤️
It's definitely difficult navigating and finding your place in such diverse communities and I can only imagine that the pressure in health-related communities to be "grateful" or guilty for "having it better" or just having a different experience than the common narrative is a lot more.
Thank you for talking about this openly on your channel! My mom has cancer and got an ileostomy to help with her recovery. I’m her caretaker and it’s been a really amazing learning opportunity. Very, very stressful, but I’m going to have a lot of really funny and gross stories to laugh about later.
thank you for being so honest in these videos. my sister has IBD so these videos help me so much with gaining more of an understanding of what shes going through!
Hi Hannah!!
Your videos have made me feel so much better, and more confident, since my Ileocecal Resection... I went into surgery being told that there was a 90% chance I would have no Stoma... and I woke up 6 and a half hours later with one....
since having him (my Stoma is called Barrie!) I’ve felt really up and down.... some days, feeling lots better, and other days emotionally struggling so much with the look of my new body....
I was very much like you. I felt like a healthy person. And now I constantly look like a sick person...
I’m so grateful that you’re brave enough to voice your opinion.
My surgery is reversible, hopefully, but at the moment, I’m very resentful of my IBD.......
Lots of love and hugs. You’re such a rockstar. I really appreciate you ❤️
Hi Hannah I have only watched the first minute and already want to say thank you. The overwhelming amount of positive inspo vids pissed me off for two years because I simply couldn't relate. I wasn't there yet and maybe never would be. I just needed it to be ok that I wasnt ok. I'm just here to say Hooray!!!! Nothing else x
Thank you so much for this video. I have Crohn's and when I had my stoma I struggled with the same feelings. I frequent an online support community and most people agree their lives are so much better with a stoma. But I hated mine and was so depressed.
Thanks again and I hope your UC can stay under control!
Hannah, I do understand how you're feeling about life with a stoma. I don't have ulcerative colitis like you do, but, I lost my stomach to gastroparesis. I live with a feeling tube in my jejunum.
It can be overwhelming at times dealing with the constant care of the stoma site, having wound care supplies with you, and in my case, hauling my feeding pump with me in a backpack can be a drag at times. Some days are better than others, as you can attest. But, being alive and dealing with our health issues is better than not being alive. You are such an inspiration, and I keep you in my thoughts and 🙏!!
Xx from Genevieve in the USA
Honestly Hannah, how you feel is OK! It just is! We all have different reactions to things. (I'm also willing to bet those positive testimonies from people whose lives were changed by their stoma, for the better, still have times where they aren't really coping with it emotionally and just struggle with it!!) I've been ill with multiple chronic malarkies for 23 odd years now and I have my ups and downs that's for sure! But noone has the right to make you feel like your experience, your feelings, are less relevant than someone else's! Because they aren't. I can tell how hard this video was for you and how emotional you were, so I think you were really brave to make it! Hang in there. And keep being YOU!
my story is so different to yours but i feel like we’re sort of going through a similar thing in terms of learning about being disabled/chronically ill and accepting that we are. there’s so much to learn and it’s hard to not detach myself from it all as a person who doesn’t know all that much... even though i am now experiencing it. i don’t know if this made sense, but i love when you talk about it, and i love seeing you grow and learn in similar ways to me :)
Hi Hannah, I've enjoyed watching you as we have both experienced new life events and grown our different ways. Ever since I was young I suffered with mental illness and was later diagnosed with a personality disorder. I always knew I was different or abnormal mental health-wise and although obviously it's hard and can feel unfair, I feel like I've had a lot of time to remove stigma from mental illness and see the "good" in how my brain is and what I have experienced in therapy as now I feel I can share what I've learned and I have communication and interpersonal skills I may not have had otherwise.
However, last year, I was suddenly diagnosed with cancer at 21 years old, and up until then, I considered myself to be quite "normal" and healthy physically. I have finished chemotherapy but will continue to get scans every three months to check for return of cancer and it feels like a very chronic condition despite others celebrating that I'm "cured" following chemo. It feels like a waiting game and somehow, I feel more limited in my cancer chronic illness than the chronic mental illness that has affected me for so much longer.
I understand like you, to be grateful to receive treatment and be alive, AND, acknowledge that the subsequent accommodations to daily life that are now necessary with having a physical chronic illness aren't fun. I don't really have a neat way of summarizing my thoughts nor do I really have a sure conclusion, but thank you Hannah, for being honest and vulnerable and raising awareness on things we may not yet feel confident to talk about to others.
SAMEE! I supper from join inflamation for past 7 years, meaning being diagnosed while beeing 15. The thing is, on every day baisis, I feel pretty good but I can’t do certain things and it leaves me feeling vournelable. It’s hard to get used to the new lifestyle and new boundrie for your body. A relief, surely. Knowing that your pain wasn’t made up is helpful, but living among your friends not being able to perform, not so much.
Hannah, don’t get guilty. Everyone wants to feel safe AND healthy and any sicknes is anyones choice. What you said is’t ungreatful. It’s natural and healthy to think (or dream) about being healthy.
I can relate to that. When I was 13 I was diagnosed with Osgood Slater's and then Sever's disease. These aren't actually diseases, but were connected to my adolescent growth spurt. Basically my bones were growing so fast it put my tendons under huge strain which caused pain first in my knees (it felt like when you've smacked your knee on something hard and it throbs for ages, except it lasted all day) and later in my achilles and heels (this was *really* painful. On a bad day just flexing my foot felt like someone had thrust a red hot poker into my achilles and I couldn't even stand up). Most days though I could just about hobble between my classes at school, but not much else. Stairs were particularly painful and I dreaded them more than a Dalek does.
I went to various specialists and consultants who all said there was no treatment, I just had to wait until my growth spurt was over. In the meantime any extra stress e.g. from exercise or a fall would most likely snap all the tendons in my legs which would mean major surgery, being in plaster for 6 months and leave me on crutches or in a wheelchair for life. Osgood Slater's isn't that uncommon and usually only lasts 3-9 months, but all the specialists said I was the most extreme case they'd ever seen by some distance (it's unusual to have Sever's at the same time too) and it affected me for nearly 3 years.
This had a major effect on my life in various ways:
1) Firstly I became increasingly isolated as I couldn't join in stuff with my friends, not just the activities themselves, but also when they were talking about their adventures it was difficult for me to join in the conversation.
2) My mother made it clear how much a nuisance my condition was to her and my father, so I felt guilty about that.
3) I couldn't do PE, but because there were no visible symptoms my P.E teacher said I was faking it (despite me showing him medical notes from several specialists saying under no account must I do any exercise and referring him to my Tutor and Year Head). Every week he tried to bully and humiliate me into doing P.E anyway and would shout at me when I refused (my fear of being crippled for life was greater than my fear of him).
This in turn encouraged the other kids to bully me, most didn't believe there was anything wrong with me. Soon all my friends shunned me too and for the next couple of years nobody wanted to sit by me in class or talk to me. I discovered later they were scared of getting the same treatment if they associated with me, but at the time I didn't understand that and just thought everyone hated me including all my old friends, but I didn't know why since I'd never done anything to anybody. From being reasonably popular I suddenly went to being utterly friendless.
4) Whilst all my old friends were going to teenage discos and getting their first snogs and girlfriends I was at home on my own. I thought all the girls must think me a pathetic coward for not standing up to my bullies (I'd been warned that if I got into a scrap even a mild impact to my knee from a blow or fall could cripple me for life, so just took all the shit coming my way and tried not to react). One girl did ask me out, she suggested ice skating and various other things, even just going for a walk, but I couldn't even do that. Pretty much the only thing I could do was watch TV, not very exciting or romantic, especially with all my family being there too and she obviously thought I was making excuses and didn't like her, so then I felt guilty about that.
5) All the above had a massive effect on my self confidence and mental health which was far worse than the physical restrictions and pain. I was living in constant pain/discomfort, fear of being permanently crippled, paranoid (because everyone *was* out to get me) and suffered badly from low self esteem, anxiety and depression. I felt utterly helpless and alone and became suicidal.
Although my physical problems lasted less than 3 years and ended when my growth spurt finished the mental effects lasted for years and even today I feel like I missed out on a big chunk of the growing up process, especially those early learning experiences of how to interact romantically with girls ( I didn't get my first snog until uni and even then I was nearly 20).
Compared to Hannah and many others my physical problems were minor and only temporary and I'm very fortunate in comparison. And the bullying and trauma I went through is trivial compared to many people's (I know a couple of people, including an ex, who were sexually abused as kids). Despite knowing that, a bit of me still wonder's if my life might have been very different if I hadn't had the Osgood Slater's and Sever's.
The one good thing is that the experience made me a lot more empathetic to other people who are having a tough time and whenever life gets shit I can look back and think: "At least things aren't as bad as then and if I got though that I can get through this."
P.S. Sorry for waffling on for so long!
Thanks again for your videos! As you said in this one, it helps a lot seeing people like you dealing with a stoma. I don't have one yet, but I probably will soon.
I try not to think to much about the fact that I'm chronical ill. One thought that helps me: Noone knows what is going to happen tomorrow, even the most healthy person can have an accident the next day ( I hope they don't, of course!!) and even a chronical ill person can lead a "normal" life. But yes, in my times of remission, I felt healthy, I didn't think of me as an ill person. So I can totally understand you!
Thank you for your support!!!
Thank you for this video. The accepted narratives about illness pretty much all fall apart when you have to live them for more than about five minutes but people writ large still fall back on them because they're all we've got in a lot of cases. For me, I had a life-threatening illness at age 4, so don't remember that "before" time when I was a healthy person, but, after having gone through 6 years of treatment, I've been cured for almost 20 years. It took ages to think of myself as a healthy person, in part because the treatment I had to have can have serious medical consequences decades later, and because the enormity of what happened to me left me with pretty serious PTSD that I'm still working through. So when people are like "oh well its so good that's all behind you now" I don't know what to say, because it still has an enormous presence in my life.
I try to keep my identity out of things. I'm healthy now but I'm not a healthy person. Tying in identity then makes remission/relapse feel like a personal failing rather than just... A thing... That happens
this is something so important ive had to learn. was in remission for 3 years but now currently badly flaring. id sort of forgotten i had UC and it felt like i was going backwards and, yes, i felt like a failure. whereas, as u said, it's our disease. it is what it is.
This is so so helpful to here, especially the healthy/not-healthy discourse. I have crohns and don't have a stoma, but am still transitioning from seeing health as a possibility or something to strive for and now realising that what is 'healthy' for me will look drastically different for other people. I have to take lots of medication each day, and I'm gaining more and more intolerance to foods, and the suddenness with which the flare up that led me to diagnosis came has made me aware that things could suddenly take a turn at any moment. My version of a healthy day might mean eating nothing but crisps because they don't cause me to have any weird reaction like most fruits and veg do, and that's still taking adjusting to realise and learn and not punish myself for! I think each person with IBD has such different versions of personal health and it can be really hard to validate yourself with them when normal ideas of 'health' are everywhere!
Thank you so much for making this video! I had a very bad curvature of the spine and I was forced to have a fusion a couple years ago. If I hadn’t of had the fusion my rib cage would’ve caved in on my lung and heart and who knows what could’ve happened. I am extremely grateful for the surgery. However, it has also ruined me. I got a huge stomach ulcer that somehow erupted during the spine surgery and nearly ended up with stoma. The fusion is almost my entire spine and it’s very painful. There’s so much I can’t do and I have to take so many medicines that my head is foggy all the time. I feel so bad for being unhappy about my condition as I’m so lucky to have had the opportunity to correct my spine. I 100% know where you’re coming from although obviously I have no idea what you go through day to day. Once again, thank you so much for sharing your story and your feelings. It’s so lovely to know I’m not the only one who feels rotten for not being overly happy about my surgery❤️❤️❤️❤️❤️
Firstly I love your style of speaking on the video, you come across very confident, which is something I lost when I had my Stoma.
I was healthy, no bowel problems at all (apart from I had interception when I was 3), then one day I got a perforation from an infected Diverticulitis pocket, again never knew I had diverticulitis, so I was rushed for emergency surgery and woke with a Stoma, my life instantly was destroyed, I struggled every day and it was my wife that was my rock and kept me going, I was promised a reversal after 3 months, which turned to 6 months, then a year and then I finally got a reversal after 2 years when I ultimately broke down to my surgeon.
The minute I woke up from my reversal, I instantly regretted it, that regret lasted a good 3 months, and yes it is still hard as my “toilet” trips and not like they used to be they are definitely more frequent, but I am glad I have had the second chance to live without a Stoma, I have since come to terms and accepted that ultimately I believe I will end up with another Stoma at some point in my life, but at least when it happens, like you say, I will be better prepared mentally for it.
I completely understand where you’re coming from! I was diagnosed with UC in 2017 & had 2 years of constantly being in a flare, no medications were working and I think of my life as simply existing rather than living. In Feb 2019 I went in for a scope and left 2 weeks later with a stoma which I am going to say it, has completely changed my life. I finally have control again which was something I’d completely lost and I feel more like me than I have done in two years!!((so weird I know)) but I completely relate to how much of a shock it must’ve been after being in remission for so long and you shouldn’t beat yourself up about feeling that way! It’s like when you’re first diagnosed, you wish you never had it and want to go back to being healthy, it’s only human to react this way. UC is completely unpredictable and rather than us feeling guilty of justifying how we feel about certain things we’ve had to go through, I think we need to make the world more aware of the unpredictability of the diseases and educate more on that! Everyone’s story is different with IBD and that’s something which needs to be made more aware of in the public!x (p.s. your videos really helped me going through surgery, thank you!)
My nine year old daughter had emergency three weeks ago and now has an ostomy. Your videos have given me so much insight and it's helped as I'm helping my kid navigate something I know nothing about.
I have recently been diagnosed with UC. The hardest thing is dealing with the unpredictability of it. How I deal with it is that I don't, its a daily struggle with a body thats got no logical cause and effect anymore. Your videos give me hope in the fact that I can still live my life (one way or another) and some days will be good and to enjoy them when they are there.
Thank you for sharing this. Your thoughts and feelings are valid. I have had a stoma for five years (Crohn’s). I had many of the same conflicted feelings in the first couple of years after surgery, but I do believe they can and will get better as you continue to let yourself feel & process through the changes. My feelings definitely have. A change this drastic doesn’t just take time to heal physically but also mentally. Sending love to you today.
I think this is such an important video, I think a lot of people will relate in some way, even those without a Stoma. I think it's ok to say life was better before I had this episode and had to do X to make my life better or to save my life, I also think that as time goes by you learn to just work with what you have and do get a better sense of peace from it all. Healthy for me, as someone with EDS type 3 and migraines is when I am able to do what I want with as little impediment as possible. Thank you Hannah for opening up this discussion.
Totally feel this!! It is a strange and complicated thing that can make you feel super alone in your experience. I take medication for my chronic health condition and while it is more helpful than not taking it, I still mourn the things I used to be able to do before and even during the less intense years of ill health. It is frustrating to hear of other people who go into remission or feel like they have their lives back after treatment but you're still not the "healthy" person you remember before. I'm having a hard time accepting that I might never be back to my old baseline of health, but instead making the most of my new baseline (even though it sucks and is totally not what I expected or wanted for myself).
Thank you so much for this. What does healthy mean is an interesting question to discuss. I never realized how I’ve felt about the word & I’m so grateful that this video has shed some light on that. Your videos almost always make me think in ways that I have not before & for that I thank you. 💜
I fought like a wild animal for nine years to avoid ostomy surgery. Fed up with the pain and loss of freedom, I gave in 4 weeks ago. So far, the result feels like about a push. I still have the pain, constant bloat and gas, and have having a rough go having a bag of waste constantly glued to my belly. It's still early and I'm not giving up, but the challenge is still to improve the most troublesome issues. Great video and very helpful topic.