Growing Up with Crohn's After Losing a Parent (And How It Impacted My Disease) | Let's Talk IBD
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- čas přidán 27. 04. 2023
- I'm not the best at sharing about this, but today is the 16th anniversary of my mom's passing. I've been thinking a lot about the impact this has had on my Cronh's disease journey, and explore this in this video. It is sort of a stream of consciousness - thinking aloud of what it may have been like had she been around. There are certain things you feel more comfortable sharing with your mom, which made it difficult in certain aspects of dealing with IBD. I hope that this video comes across as respectful as possible.
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Hi, I'm Maggie and I have Crohn's disease. I am thrilled to be here sharing my personal experiences with Inflammatory Bowel Disease as well as living with an ostomy. I'm proud to share a little bit from a clinical experience as well, having worked as a GI pediatric nurse and ostomy telehealth nurse. I am so glad you are here. ♥ #ostomy #ibd #chronicillness
Anticipatory grief is the worst. That strange feeling of relief when they do die is difficult for someone who’s never experienced it to understand. I totally get it
THERES A NAME FOR IT? I don’t experience grief in any other way, I don’t care when people actually die, but the waiting for someone to die phase absolutely destroys me. Thank you for giving it a name, because I previously thought that I just didn’t grieve right.
@@Moon17ob no problem! It needs to be talked about more because grief is already a whirlwind of emotions. Feeling guilty for that relief or feeling bad for not feeling super sad after someone has passed isn’t what you need at that time!
Your story isn’t weird at all. My Mom passed in 2020 and I was her full time caregiver since her massive stroke in 2013. Like you, I begged my body to hold out. It did, but in November of 2020 the UC had spiraled further out of control. I was scheduled for emergency ostomy surgery, but the steroid stabilized me enough for my surgeon to schedule me for Jan. 6th 2021. That gave me a little over a month to learn all that I could. I landed on your channel and you literally became my lifeline. I watched your videos constantly during every waking hour. I thought about you as they rolled me into surgery. I was thankful for your honesty regarding recovery from the proctolectomy. Everything was done in one swoop and I spent 2 months in the hospital due to an undetected infection in my colon that hit my bloodstream causing sepsis. As I recovered I thanked God for your channel that I continued to watch. I embraced my stoma and already knew how to care for it and change my bag. My Nurse only needed to tweak the products that best suit me. I love Oklastoma (What I named it). I’m in Michigan. The weather is so topsy turvey that my garden plants have created a jungle in here😛😵💫. I have a greenhouse, but I am too afraid to store my plants in there quite yet…. I’m rambling again, but thank you for your videos. You have helped me tremendously. Ps. My Mom was in hospice, but passed in a blink of an eye. All that we were told would occur during the active dying phase did not. One second she was breathing, and the next she wasn’t. Once my Sister and I verified that she had passed, I also felt relief. One reason was that I had accomplished what I SWORE that I would even if it killed me. (It almost did😬)
I lost my husband suddenly, which shattered our family. Our son, who turned 8 the day after he died, started having seizures shortly afterwards, and I went through the fear and medical tests suddenly as a solo parent. It was hard so I can imagine it was difficult for your dad.
Alcoholic people are very hard to deal with. As a nurse myself, I've had a few patients that came in through the ER and were then admitted to the floor where I worked. They are usually very quiet, but then you get the ones that are very awake and mean, belligerent and there's absolutely no reasoning with them. I can see how difficult your childhood was. You never know if its going to be good mommy or bad mommy. It's like a roller-coaster ride you can't get off. My heart hurts for you and what you could have had. Your dad seems awesome to take on his sick little girl and do the best for you both. I have no doubt that it hurt when she passed, but if we are all truthful, it's almost a relief. You don't really mourn over the deceased, you mourn over what you missed and anger fits in there. You have turned out to be a lovely lady, so kudos to you and your dad.
It wasn’t a weird video at all. So heartfelt and courageous really to share such a poignant time in your life. The pictures at the end were so striking. Your mom was very beautiful. 💜
Maggie, I don’t have crohns disease but I find your channel so informative as I have 2 friends who have crohns and have had their colons removed. It helps to understand what they have gone though. I totally understand the “humor” with the doors. My mom was mentally ill my whole childhood in and out of the hospital. I too have had that type of humor, it helps with tough life situations. It’s been many years since she passed and I still feel like I am learning more of what she/I went through.
I was 35 when my mom passed away. I am lucky she got 30 years longer than they thought she would have. I have a physical disability as well as a chronic illness. I have had them from birth. She was able to teach me a lot about the treatment I need. I also learned a lot from her about coping. Having said that I am now the most I’ll I have ever been and my dad has had to take over a lot of helping me. This is been difficult because I have always been told to be fiercely independent. And I always worry about whether she would think I was letting her down. Sometimes I’m glad she didn’t move to see the last few years of me being so sick. I also didn’t like the fact that I couldn’t care for her when she was very sick myself And I worry about my dad getting old as he is nearly 70. I am lucky to have amazing caregivers as I have up to give in and surrender some level of independence, but I never expected to have to do until older age. I think my dad gets very worried about who is going to oversee things when I am sick and unable to advocate for myself if he’s not around. Having said that my mum did teach me to be a good Advocate for myself. I knew she would’ve been so upset about the things I’ve gone through in the past few years, but I hope she’s watching me from above as I hope your mum is watching you. I think she would be very proud of the help you have given to so many people. You gave so much help and support to me with your videos when I had my ostomy surgery. I seriously don’t know what I would’ve done without your videos and the information you put out there. You are a very amazing person.
530pm. I am a retired nurse. My mother dies when I was 29. She was very ill but very coherent still. I feel I was in denial for a few years after. Then I mourned often and still do. Now I'm 73 living with crohns. But, I carry on to be strong as long as I can. Also, you're a great inspiration to me. Thank you ❤
You process massive life events when the time is right, when ever that time arrives. I hope this helped you. It certainly showed even more what an amazingly strong, well rounded person you are.
Thank you for sharing this with us Maggie, grief is a strange thing and sometimes it comes and goes at unexpected as well as the expected times. Sending hugs from this Aussie pharmacist!
Maggie, you're truly an amazing person! I recently discovered your videos when I was preparing for my first surgery with was a laparoscopic pan-proctocolectomy for Crohn's in November 2023. Your content has been incredibly helpful in guiding me through the process and making me feel more at ease with the idea of living with a permanent stoma.
I can relate to your story on so many levels - I was also diagnosed with Crohn's at a young age (9 years old), am currently 31 years old, married, and experienced a sense of relief after my mom passed away. Your videos have made such a positive impact on my life, and even though we've never met, I feel like I have a friend I can connect with when I lack the energy to reach out to others. Thank you for being a source of support and inspiration!
It's not uncommon to start unpacking trauma or things that happened as a child as you get older. It makes sense to me that you are working through this now. Not a weird video.
Oh yes. I never realized until in my mid 30s what I went through as a child. It never truly leaves you. No escaping from it. And in fact as you get older you may feel the impact of the childhood experiences even more intensely and remember more.
I remember you talking frankly before and you showed the kind of strength then as you do now you continue to be an inspiration to so many sending love xxx
Thank you for sharing and opening up . Your mom is watching you with a smile and very proud of the woman you’ve become.🙏😇
Thank you for sharing Maggie. It was interesting to hear how this all impacted your life. I can understand, on some level, the grieving later in life. It makes sense as you go through life and hit certain milestones, and she is not there. Sounds like you needed to get your thoughts out there and I'm honored to be in your audience. Your sharing your experiences with IBD has been a blessing to many. ❤️
Thank you for sharing. I've lost my dad when I was 19 and many of your thoughts resonated with me. I'm 43 now, so can relate to the looking back aspect.
A wonderful, heart-felt video.
Your mom was beautiful, Maggie. My dad was an alcoholic during most of my younger childhood. I'm not sure what changed, but he stopped drinking and smoking and never looked back. He was rushed to the hospital on a Wednesday in October with complications of COPD, asthma, heart problems, and high levels of Carbon Dioxide. I truly thought by the time my husband & I made it, he would have passed away. He was in the CICU from the 7th to the 31st, which is when he passed away. My husband & I were at dinner, which we believe was very intentional on his part. He never got to see me finally get my medical diagnosis or all of my husband's accomplishments. Hold those sweet memories tight, and please know grief does not have a timeline. I hope you are at peace. Take care.
You had to grow up so extremely fast, I am so grateful that you had your dad to be there with you.
Nothing wrong thinking about this and process things later on, i believe we process things as we are ready to face them.
Thank you so much for this video and for sharing with us. ❤❤❤❤❤
Missed you sooo much... Thankful to have you back!😊
Thanks for being so open and honest. You are so appreciated!
Thanks for sharing, I'm so sorry that you've experienced all this at such a young age. Keep taking care of yourself! ❤
You are a very special person who has been through so much. Thanks for sharing!
So very sorry you experienced that at such a young age. You are a very strong woman and I enjoy hearing from you.
Life has thrown you around quite a bit Maggie, however the deep impacts you received have been controlled by your attitude to life. You are making not only your life better but you are also no doubt an inspiration to so many others. This world of ours needs more people just like you. 🐨 🦘🦘 💖
Your little story at the end, made sense to me. It’s the whole reason I didn’t want to be in the room when my grandpa died. Alas, I was the one tasked with counting his breaths the last day.
Our minds have a strange way of protecting us from trauma. What may sound insensitive to some may be perfect for you. I wish my mind had protected me from seeing my grandma’s casket go to the furnace.
I’m sorry for your loss, but the positive is that you’ve grown so much since then!! My dad is an alcoholic, and I keep seeing him dead in my mind’s eye. It’s horrible, but we’d probably be grateful. But also sad.
No one would choose adversity, but it has made you stronger. You are better equipped to face life's challenges.
I love your honesty. Thank you for sharing.
Appreciate u talking about this hard topic
Wow! Sorry to hear your mum also past. My mum passed of cancer when I was almost 3 now near 40. I was also born with a disability... Cerebral Palsy.
It's so nice you had such a great support system from your dad and brother and now husband as I was diagnosed 4 years ago or so and to this day no support. So thank you for this video. Take care.
You were such a doll when you were little! I loved seeing the pictures and your mom is beautiful.
Delayed grieving is your mind's way to shelve things until we can unpack it when we feel safe or can cope. ❤
Your openess and honesty are so refreshing! People like you make it easier for others to tell their truths
You are awesome. And, I LOVE your videos. ❤
Thank you so much for sharing, Maggie. I'm so sorry to hear that you and your family had to deal with all that pain and sadness. I did too and my dad died a few months before his 50th birthday. Thank God for the people that are or were in our lives to help us get through those day. May God continue to bless you and yours.💕
I totally get it & the weird humor too... similar experience with my mom too, years ago. Appreciate your sharing!
You're not alone. I lost my mom at 16 and now I have Crohn's disease . I know exactly how u feel.
Those last pictures were precious and I can see where you get that lovely smile. Thank you for sharing. Also Congrats on reaching 92K subscribers.
It's good you did this one and if it helps, it makes sense now you can actually mourn and process. Sometimes with circumstances, our headspace isn't there while facing our own concerns. It's not a bad thing, it's normal.
Real glad you could hash things and details out with your brother. It's an important part of closure and mourning.
I get that part about being to familiar or comfortable in the hospital setting.
I think if we live in one frequently or tag along with a parent, you grasp even as a child how it mostly works and in some ways feels like a second home. At least it did for me.
Only having one parent makes a difference if little or no support was there.
For me, it was my strongest parent facing my care. That's what pulled me through it.
Have a great weekend and appreciate you sharing.
Good for you for doing this video!!! I hope that someday my Granddaughter will talk like you just did regarding the death of her Mom (my Daughter) when she was 10 years old.
Thankyou for sharing❤
You have lived through a lot of trauma. Thank you so much for sharing.
Not bizarre at all, everything you said made perfect sense to me. Thank you for sharing
Maggie, I appreciate what you had to share. So many things you said resonated with me and so it makes me appreciate the choice you make to share vulnerable things that you have gone through in your life because they have either happened , or are presently happening in so many of our own lives to varying degrees or circumstances. I appreciated what you had to say about it feeling like a relief, at the time…and sixteen years later you are now processing the grief. Difficult, long-term illness is a major stressor for the caregiver and the children (most especially when addiction is involved). I, also think that is why I am so fiercely independent with my care and never want to become a burden to my family (like that’s something I have control over, anyway!)
I think growing in my faith has helped me to understand my situation better, but it doesn’t mean I don’t grieve or still have to deal with my stubborn will or fears, at times, because I do…it just feels like it all has a softer landing place these days. This stuff ain’t easy, none of it is, so I have to agree with you, maybe the platform you have been given is a blessing, to get it out of yourself, AND, to help others learn that it’s ok to talk about, too, and they don’t have to hold it all in all of the time. You are a blessing… please don’t ever forget that! ❤️
Nothing bizarre. All is alright. Maggie you're GREAT! Sometimes deepest sorrow is the key to greatest happiness and development. Get my deep bow to your wise personality💖
Maggie, you are such a wise soul.
I love your honesty and your sense of humour is like mine
My Mom died from alcoholism I totally understand it is heartbreaking to grow up in it 😞
My mom was an alcoholic as well but it only got bad when I was in high school (when I really needed her). I had a rough time with it, then in my late 20’s got sick, chronic illness sick! She drank still but was there for me, but not as much as I needed her to be. my dad he really stepped up to be there though and came to visit me every day for 4.5 months of being in the hospital. Then 2 years later I was in my 2nd yr of nursing school and mom had a heart attack and needed a triple bypass. She had a double (not enough veins available for a triple) and she never touched a drop of alcohol again. She said she lost the taste for it, that the thought of it made her sick. Whatever it was saved her from one less vice! She died 12 yrs later of a second heart attack and it’s been 5 years now. I miss her and feel cheated of missed time with her. Lost my dad back in 2012 (mom in 2018).
I’m glad that I searched up what living with a colonoscopy bag on CZcams tonight because my sister-in-law had talked to me about thinking about getting the surgery to get one. I’m also glad to know that I’m not the only one and you’ve helped reassure me that it’s not as bad as I thought it would be. So thank you very much Maggie for sharing your perspective!🙏🏾🙏🏾🙏🏾
I was diagnosed with Ulcerative Colitis at the age of 8/9 and have been dealing with it since then though I am now 22 and have to think for myself. I can definitely relate to you about not having a parent since I didn’t grow up with either of my parents and grew up with having my grandmother take care of me. They are both still alive though I don’t have any contact with either of them. Mother because of her alcoholism. Father because of his absence. Haven’t had any procedures as of yet due to my UC though my colon is inflamed and if it doesn’t improve then I’ll have to get the surgery.
I just want to validate the relief you felt after your mom passed away, totally get it. My mom, dad, and a number of family members of mine who have suffered long illness before passing got me feeling the same way. I believe its healthy to feel... whatever one needs to feel during those times. Our feelings are ours and personal to us. So yeah! Your videos are very informative also. My daughter struggles with IBS so i found your videos researching, trying to figure out if ibs can lead to Crohn's and get her to see a Dr.
Thank you for sharing your story Maggie. I don’t think anything you said was bizarre at all and I can’t imagine seeing my mom like that at such a young age. I’m glad you have your brother to talk with and help process through things.
Maggie is smart, generous with an excellent sense of self-deprecating humor. The journey thus far has not always been easy or pleasant, but the reality seen via these vlogs means correct choices were made along the way.
Very sensitive and touching video. Hope sharing helped you…❤️
I’m a little late watching the video but just wanted to thank you for making it. The longer I watch, the more I see how similar we are, even tho I’m significantly older. I really felt it when you were talking about wondering if your need to care for yourself stemmed from your past. It felt like a thunderbolt hitting me because I’m the same way, and when you said that, I felt all the years with an alcoholic dad, and started realizing where my own need to always be strong and do it on my own comes from.
Thanks for sharing about your experience with your mom and how her alcoholism affected you. It was my dad, in my case, who was the alcoholic and he died at 48. Right after my 29th birthday. I am glad you didn't stay in the room. I was not there when my dad died since he died before we got there. There were a lot of questions I had about what might have been with him but I realized later as I got help for my own alcoholism that he would not have been able to have a relationship since he was pretty much inebriated all the time. My experience with my dad was mine as well. Alcoholics progressively get worse, and he was not the same person he was when I was a child the longer he continued to drink. Bless you that you are able to be vulnerable now, and yes it is hard to ask for help when you are used to being in charge of you. I was determined to never need people and then my illness took a major turn 4 years ago. I got a secondary condition that landed me in bed for almost two years off and on. So not to take away from your story, but I wanted you to know you are not alone. Your mom would be proud of you, you are an amazing person. I am getting better and over some of the more devastating side conditions of my illness and am so grateful for that. I was told it was a 3-5 year survival rate when I was diagnosed 4.5 years ago. The good news is I am getting better, not worse. Thanks sweet Maggie.
You are very brave and cheerful and an inspiration to others on how to deal with illness and live in the present. Thank you.
I'm so glad you did this video. I always wondered why you only talked about your dad! I think you went through a whole lot as a child between your mom's disease and yours. And let's face it, yours was a terribly difficult disease to experience at such a young age!! Maggie, I have more respect for you than I have and that was a whole lot!! You are an amazing woman. Keep talking g whenever you feel like it. It's what has made you so mature and able to communicate in a way that removes the stigma of crowd's and you are one absolutely amazing little gal!!! You should feel really proud of how you were able to deal with an alcoholic mother and your disease when you were so young! Thank God your dad was so present. He sounds like a remarkable person as well!! We have been blessed to know you and learn from you. You are a great teacher and your humor gets us through the rough spots!
Love you!
It feels good to hear this from you, and I hope it’s good for you to talk it out. I have a trauma history, and am a mental health clinician so I really feel how good it is for both of us to share this with you. So many life lessons to reflect on, and an opportunity to be very open, very safe, and very human together. Thank you so much for offering this time together 😊
I follow your journey. My 15 year old granddaughter has Crohn’s. Some of your information scares me but the way you handle it is comforting.
Hi Maggie, I'm so happy 😊 to see your life with your prince Zack, I'm so happy that you choose the right guy to support each other, you looks beautiful, you are so brave 🌹🙋🏻♀️thanks for sharing your history 🌹
Thanks for sharing. You were a brave smart kid. My Mom was an alcoholic also, but apparently not as bad as yours. I loved her unconditionally and still miss her after almost 40 years. She was 62 when she passed. Like I said before I don't have IBD, so can't say I know what you're going thru, but I love hearing you talk about it, and it sounds like you have a really good man by your side. And dogs.
Thx for sharing your experiences Maggie. The loss of a parent affects us deeply. Next week it’ll be the anniversary of my mom’s death. I was five. I wasn’t diagnosed with Crohn’s until my early 20s, but had it since my teens.
I understand the delayed mourning. I wish I had gotten to know my mom, but it wasn’t to be. Life can be so hard at times, but so beautiful at other times.
God bless your Dad. I would love to hear his perspective if he is comfortable
Although I have no persoal experience with a parent with alcoholism I have seen my share as a nurse. I have seen people come and go and then come back to the floor I was working then. I have seen how devastating alcoholism is to the patients and families. A guy that I am working with this winter told everybody at work that he is an alcoholism and that he is under treatment for that. That was so strong of him opening up about it. And by the way, the floor I was working then also had a lot of chrons and ibd patients so I am familiar with a lot of what you are talking about. Thank you for spreading awareness.
Maggie, it’s not quite the same, but my paternal grandma passed from Alzheimer’s at the end of 2018. She had clinical symptoms for at least ten years. In the last few years, she progressively lost her mental and physical abilities and near the end wasn’t eating anymore and spent most of the day in bed. I remember the day we received news she’d passed, my dad was crying but said “I’m so glad it’s over”. It was such a battle for though of us who had been her primary caregivers and we’d already grieved for years. So it was a relief that she wasn’t suffering anymore.
My family has that sense of humor. I can relate to a lot of your video. For me, anticipatory grief is worse than the post death grief. And not surprising its taken awhile to unpack this. Often it does take a lot of time and you've gone through a lot. I've chronic issues and am in the medical field. I've always been comfortable in facilities of varying sorts. I think it helps me in my chosen career (hospice).
Oh Maggie, what a hard time having to go through so much without your Mom. I understand about the alcoholism. It’s in my family and I’ve married times two to alcoholics. I really hate the disease of alcoholism . It’s taken away one husband permanently and now another is just drinking every day so it’s like the same thing being taken away. Hugs 🫂
Maggie, don't say you're sorry for sharing, it's excellent that you did. I think as we get older we are wiser and more vocal about our lives. We have memories that we thought we didn't have but as we think about that time more, we can have more pleasant times too. I choose the better times, laughing and loving my close family along with friends and people who impacted my life!
As the sister of a long term addict, I totally understand the anticipatory grief. I am always expecting the phone call about my sister or her oldest daughter dying from an overdose or something related to their lifestyle. It’s as if you have already grieved them in advance.
I know you may never read this, but I found this video to be very informative as I have with many of your other videos. You share a vulnerable part of yourself in this video & that is not weird. What it is, is real and I love that. Thanks & take care
❤❤
Everything you said made sense. It's obviously not the same, but when I lost my grandma in September of 2018, the scene was similar, and we all have the same sense of humor. There were a lot of sarcastic jokes about people accidentally setting off different things and "We should all go out a different way and set off all the doors!" While that's definitely not what I thought I would remember from that night, I'm glad I have that. Because, while I wanted to be, and was in the room, it was very hard to see her that way, and completely understand what you said about not wanting that to be how you remember someone.
Thank you so much for the lovely pictures at the end. Your mom was beautiful and you look just like her. ❤ So glad you have your brother to fill in some pieces at times you might need them and how awesome that you got and nephew to love and spend holidays with and spoil 😅 💙
Glitch in phone . . Ugg , So great you have your brother , neice and nephew. Thank you for all your videos. Even the ones you think are not interesting. We love them all and wish you feeling better days right around the corner 💚 💙 Blessing to you , Zak and all your family 🐾🐾🐾🐾 ☺️
The pictures are just beautiful. You are sooo adorable and still are.
You are STRONG,
You are INTELLIGENT
You are BRAVE, OPEN
and just all around
very solid human being
PS and ironically that could be partly due to the adversities growing up. You were born to a bad mother, and grew to be an outstanding woman.
Oh Maggie my heart goes out to you
Sending you hugs ❤
Your reality is part of you. Nobody you care about judges you or your family. When you talk about your experience we accept it as part of you.
Maggie you are an amaizing inspiring awsome person strong brave wise funny relaxed and also vulnerable and sooooo much more Maggie you got this you have always had to manage things that someone like a mother should have managed for you when you needed her but you speak with love amd wisdom for here here which shows your big shoulders 💜😘💜
It's very hard to depend on others for things. You want to be independent all the time. It doesn't sound bad you knew your mom was going to pass. My dad had lung cancer and when he passed it was a relief. It was a relief that he didn't have go through the illness anymore or hurt.
A heart felt video which was lovely to watch.. please could you do a video on going through chrome's.. operations.. with your dad's help as a teenager when it was just you & your dad.. id like to know how hard it was as a teenager going embarrassing problems with your dad been a man
Wow, honey there's no mistakes in God's world, I was absolutely meant to watch this video tonight. I'm in recovery and will be picking up my 14 years on May 8th . My son's have forgiven me thank God, I hope you can tell your story to Al-Anon I think it would really answer the questions you have and help others. Mama is fine! You are fine! Thank you so much for this video!!!
I'm really sorry you've gone through so much. My mom was addicted to pain meds before I was born. She herself had a lot of illnesses to go along with it, but unfortunately most of it I felt she was "faking" to get pain meds. I can't tell you how many times she overdosed sometimes right in front of us when we were little. She attempted suicide a couple times and again I figured she was using that to get more medicine. While she was alive I didn't know I had medical problems. 9 years ago she passed away from a heart attack and I honestly believe it was from the meds and lack of care at the rehab facility. Very late response getting to her. I wasn't able to say goodbye. Now I tell you this because shortly after she passed my medical issues started approaching. I'm in a wheelchair on oxygen. On narcotics. I have lupus,RA, a tear in my left diaphragm,fibromyalgia,asthma,IBS,liver issues, congestive heart and lung failure and mental issues. I'm only sharing this because most of my problems cannot be seen thus my kids see me as I seen my mom minus the narcotics. Phew that was a lot. Lol I said all that because I get it with not having my mom around after I got sick, and she also had other issues too. I get you! Have a blessed week
Hey Maggie, while I have a few years on you, I nonetheless feel a kinship with you a lot. I am an RN also. I was a critical care nurse for many years ~ almost 25 years before my connective tissue disability took me down all the way. Multiple spinal fusions, so so many surgeries, most recently an ileostomy due to having end-stage IBD. This is according to my colorectal surgeon… funny, I couldn’t tolerate having a colectomy due to being so malnourished. You know how this works. Such a lengthy period of time, struggling and being sick, my pre-albumin 10. Anyhow, I’m grateful that that surgery is Done.
I simply had a loop ileostomy. The CRS said that my colon, from what he could see through the trochars, is the absolutely longest: he’s seen in his entire career. Not toxic megacolon. Just freakishly long. He said he estimated that the average colectomy takes, you know 7 to 10 hours? Mine would be double that. So I have at this point , zero interest in going back for more surgeries. I don’t feel like sharing all of my horror show here publicly, but, I can tell you I know ALL about vomiting stool. And I mean mass quantities.
So, I hope you get to know you better. (Being Barf Buddies and all) 😂
By the way, I had both parents die when I was 14. It sucks. It’s really hard, especially because, I think we live in this attitude of don’t pity me. When I see your pity, it hurts me so much because I don’t want to cause you pain. At least that’s my reaction formation thinking about it.
I’d love to speak with you or text with you rather I should say. Let me know what you’re up for and I can shoot you an email or if you have a DM.
Hang in there and know you’re not alone for sure. You have a lot of very encouraging, loving followers here. I’m grateful for that for you! Please consider me one of them now.
Karen.
Totally get you on this feeling of it's over my dad passed 2yrs ago in may and I still haven't grieved he was ill for my entire 40yrs he suffered strokes and heart attacks an other things but didn't help himself we had so many times of being called to hospital for him to just pick up again in the end he literally stopped caring eating etc my poor mum had to call an ambulance he never really came out of it he was in organ failure and had sepsis the weirdest thing they never gave him any nutrition like peg feed etc for four days and a nurse sat him up an gave him soup on the 5th he was gone early hours next morning seemed odd when he hadnt opened his eyes or talked the whole time ...but Maggie I totally get that feeling you mentioned it's like we already accepted they were going to go
the most icky feeling is that "sigh of relief". i know it and the feelings of guilt for feeling it. I had it happening to think as first response "sigh... finally" :(. But i know it was for the best, sometimes the suffering before is... worse and the suffering of the family aswell. Alcoholism is ... rough to witness.
The video wasn’t weird at all. Actually for a lot of people this too is their experience of growing up. This is their normal and this is what feels familiar and in a weird way feels comfortable with ( and uncomfortable with at the same time). In spite of the disease of addiction Your mother had she was trying her best to be a mother for and to You in the fullest sense of the term ( even it made it extremely difficult at times to carry out some of that Mothering). Lastly, Your father did one heck of a brilliant job in bringing You up ( and Your bother). From what You’ve shared, he went above and beyond. And went oh so much more than the extra mile in caring for You ( and Your brother). And his love for You both is utterly and totally so beautiful. And that mere word doesn’t fully express how beautiful his love is for You both …. ⚛️☮️ 🌹 🌏
I lost my dad what will be 15yrs in August in a car crash. Extremely hard losing a parent and the worst thing I’ve ever been through. I know it’s been 16yrs but I’m so sorry for your loss. My daddy was pretty much gone as soon as he hit 18 wheeler. Idk if I could have gone through having to take him off life support. Very sorry you had to go through that and at such a young age.
My mom passed from septicemia complications of her crohn's, I was in my freshman year of college. My dad from cancer about 10 years later. I've been dealing with crohn's for 2ish years, I'm very sure if i had more knowledge of my mom's crohn's i might have dealt with this better.❤
This video makes more sense than you think it does. :)
Hi Maggie it's ok to talk about this it's your way of grieving and letting it out so you can move on hug's you
Different cause but very similar challenges growing up, being raised by our father. 💔
Mourning is strange. My dad died in 1995 and I was so busy with travel arrangements, getting my family together , and just dealing with things that I ended up feeling much. Twenty years later I had such sadness and thinking about him. lasting a few days. I thought it was weird. I friend explained that this happens to a lot of people.
I was just reading about studies linking PTSD with auto-immune disorders. Something about being in prolonged states of hyperarousal, constantly on edge in a fight or flight experience. Always being on alert for the other shoe to drop, cause your cortisol levels to be so high for so long that they in effect over regulate to way below normal levels. And they were saying that this can cause an immune response leading to different auto immune diseases.
I had a pretty traumatic childhood, definitely suffer from PTSD. I'm usually wary of reading things online but this was something there are several sources for over a period of years it seems. So the link between the two seems plausible to my non-medical field mind.
I just wonder it you've heard about these studies and if so what you think about their validity and plausibility.
Very interesting. I will look it up myself
YES! I too am working through realising that I have PTSD from early trauma and have had 2 major autoimmune diseases which I have learned are very likely linked- it makes a lot of sense. One of the incredible people that has given me a lot more understanding of this is Gabor Mate. His book The Body Keeps The Score might be worth a look for anyone interested in a deeper understanding of this.
To me it makes so much sense that we wait until we feel safe before allowing ourselves to grieve and learn more about ourselves.
Wishing you all well. ❤
@@frittiesnz8669 thank you, wishing you well 🥰
I get it ❤
My dad passed of lung cancer just months before I had the back surgery that would forever change my life. I know that, despite things that happened in my childhood, he would've taken me to every appointment I had. I even told my mom last night that if he were alive today, he would never tolerate what family is trying to do now. She has Alzheimers. I am her caretaker. Family doesn't want me to continue caring for her, and they're causing major issues.
Life can suck, but the lessons we learn during the chaos can really make an impact.
I lost an aunt to alcohol abuse, she was about the same age as your mom.... we tried a few times to get her into rehab, but we failed...
She was very beautiful. You look a lot like her.
Sad darn 16 years ago or 1 year ago really hard to deal with someone who passed away
I sat with my mom for days when she was passing the day I had to leave and was stuck in the bathroom she passed. I think she just wanted to have my dad with her.
Your so brave and beautiful