ONE YEAR Post-Op (I was living in agony) | Let's Talk IBD
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- čas přidán 27. 08. 2024
- Watch more about the kidney surgery experience!
Preparing for surgery: • Day Before Kidney Surg...
Surgery day: • Pyeloplasty Kidney Sur...
Heading home after surgery: • Home from the Hospital...
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Thanks so much for your lovely videos Maggie! I'm a doctor/aspiring surgeon and it's been really useful to hear all your stories from your patient perspective so I can relate to my patients more :)!
Thank you for caring what it's like for patients! Not all are that way sadly
Wow this means i have watched u over a year now
It sounds that you had a tough time for a year, but don’t let yourself down, Miss Maggie.
I feel like one chronic ilness creates another; it is like our immune system is like; I am bored let’s kick something else… and it get it when you have a new kind of pain and not sure what is the cause. I am sure you are a true warrior!
Yep, they often come in pairs😢 I have Crohn’s and Artritis and a lot of other things due to all the surgeries and immuun medication.
You are an incredibly courageous young woman....and deserve only THE BEST now and going forward....
You are awesome! So glad you are feeling good, you have been through so much! Love your videos and look forward to hearing about your (and Zak and the dogs) life on the farm! Came across your videos when I was going through a temporary ileostomy in 2019 and 2020 and needed help and guidance with all that. You were an immense help. Thank you so much! I look forward to your next video.
That’s exactly what happened to me! I got an MRI with my GI doctor and I have had a UPJ blockage for awhile now.
Endometriosis is hell…. Had a massive surgery in april last year to remove a huge cyst and it had destroyed one of my ovaries so they had to remove it and complications after… Now I have to have surgery to remove my uterus because hormone therapy doesn’t work… and I’m only 32, no kids… but I look forward to feeling good and being able to live a normal again… maybe that’s selfish but rather being able to live again than suffer every day to have kids some day in the future maybe….
Life is more important Maalin .....you can adopt and love as your own
I thought the same as you but endo grows back & bowel adhesions occur, so 28 surgeries later i live with severe chronic pain, just beware my life is worse now than pre hysty at 31 😪
That’s a lot and i think it is not selfish at all. I can’t have children anymore but when i could have them i did not want them because i was in pain and sick all the time. I did not want my child to grow up with a mother that was that sick, i felt if i did it would be selfish of me. I don’t get a child to make me happy, i get a child to give them everything. Hope that makes sense, i’m Dutch;). In 2010 a lot went wrong with Crohn surgaries and i was in a coma, almost lost my life. It took 7 months hospital and 1,5 year rehab to learn how to breath, walk, talk and eat again. After that i met someone and i was curious if i could have children but the answer was no. My abdomen/belly was not able to full carry a baby, i would lose my life. It was hard that this was dicided for me, instead of it being fully my own choice. I love children and i do miss it with moments. I think it is the most beautifull thing in the world to carry a child and love it with all you have. But it is not an easy job, i am well aware and that makes it less difficult for me to accept. I have 4 nieces that i don’t see anymore, that’s a bitter pill because i had such a good bond with the first two girls.
I am just busy with my health all the time, always something going on. 2 steps forward 1 step back is what we always say. Stay strong fellow fighters, enjoy the little things and people that matter ❣️
You seem so brave and strong to me.
Sending endless well wishes to everyone xo
So happy that you are feeling good.
Glad that your problems have significantly reduced and are now bearable. It’s essential that doctors listen to you and try their best to resolve the problems. You have to advocate for yourself that’s for sure. Wishing you continued health.
so happy that you could get relief and healing!
Appreciate your sharing your story. Scar tissue is a curse and with endometriosis damage it wasn't repaired when found in my case. Loads of issues years later. Glad to see you got the care you needed. The exploration to find answers is a long process. Stay strong and continue to be your own advocate.
Wow, that sucks. I had surgery in August of 2020 and even my partner was allowed to sit with me in prep and in recovery. I am so so sorry they did that to you!!
Stents are the worst. I have had a stent twice after surgery for kidney stones. Both times I had to buy Depends and use them until the stent came out. I also felt miserable. The first time I went to my granddaughter's high school graduation and physically I wished that I was home but I was happy to support her
Just want to tell you that you are courageous, positive and beautiful woman. God bless you. He never stops working.
Hi Maggie 😀😀😀😀….I have been watching your videos for quite some time and you have been such an inspiration to me as well as others I’m sure 😀😀😀😀😀….. I’m GLAD to hear/see you are doing better 💕
You're so awesome with all you've been through.
I'm happy that you're feeling better. I sort of know what you mean about the horrible pain, I had developed a colo-rectal infection back in late 2013 (two days before Christmas! ) and had to be taken by ambulance to a hospital that was 45 minutes away, as the doctors in the hospital here where I live weren't equipped to do the necessary surgery. I ended up being in the hospital for two weeks, and had to go back into the OR 4 times in 5 days so they could do debridements of my wound site in my rear end, basically cleaning it out to ward off further infection. Then, there was the twice daily dressing changes at the wound site, that was SO painful that they had to give me morphine in my IV before they changed its and it still hurt like hell! !! So, I definitely commiserate with you on all you"'ve been through. ❤
So glad you are feeling better Maggie.
So happy to have you back posting. I had a similar kidney surgery because my R ureter, kidney vein and artery had clamped down into a true knot. ,ended up having stents replaced twice, they were fun, not. That was in Florida. Now I'm stuck not too far from you and know nothing about who the good physicians are. Can I ask for recommendations from you? I've visited three different doctors and were disappointed and won't go back to them. I saw a gastrologist when Ifirstmoved to Lansdale, she told to to get a grip. I have pain after I eat that puts me in bed. My alimentary canal is totally messed up, I've got a blockage. I'm in need of a renal doctor. Just mentioning two. I do not trust the Abington Lansdale hospital. When I had the blockage they told me my insides are too complicated and they would have to ambulance me to a better hospital with better surgeons. The blockage cleared in a embarrassing way, yep,, the student nurses were in shock and their teacher needed to buy new shoes, lol. I pray for you every night. You are so beautiful, I pray for your health to improve.
Holly smokes u have been through so much! Glad so much is behind you now. U look so healthy. 😍
Happy to see you again Maggie 😊 Even happier to hear you are doing well!! You have been a true inspiration to me over the past few years as well as a tremendous help with your tips on caring for an ileostomy 👍❤️
I understand you so well Maggie. I was born with a kidney stricture, and when I was 4, the stricture started blocking the kidney, so the little fragile toddler got a surgery, I remember every single second of my pre and post operation. It was so hard. But everything healed and I was feeling happy until the age of 33 when another stricture appeared and got worse in the second kidney, I experienced all those excruciating pains that you were going through before your surgery. For several years I had a permanent pain in my lower back, abdomen, but then it eased a bit. In my case, doctors refuse to operate on me as the kidney is functioning and does its job pretty well. Just I am left to experience terrible pain from time to time.
You are quite a strong ,young lady Maggie!! I hope this year is much better for you!! Stay safe and well!! xoxo
I have a stent in my ureter, getting it changed next month. I had an operation and they accidentally cut through my ureter. I know the pain you're talking about!
I had my right ureter collapse on me 6 weeks before my wedding. They went in expecting me to have a kidney stone but found that it had collapsed. They put a stent in for me as well, however, I was in a ton of pain. My parents were in another state so they flew me out there to meet one of their friends who happened to be a nephrologist. He went in to remove the stent and I guess the other doctor had put it in upside down. Instead of the urine draining out, it was being kicked back up to my kidney. I felt the worst pain I've ever felt (and I've had 3 intestinal surgeries. ) I'm glad that they got you sorted out and I hope you never have to get "cleaned out" again!
You had a psychopath or criminally ignorant GP. It disturbs me to hear you never got the preventative treatment you deserved and had to go through that...
Really glad to hear you're healthy and doing a lot better!
I'm so happy to hear that you are feeling better Maggie!!!
Hey one year later...you are a ok!!! I am happy to hear!!!
Please do more video...we miss you!!!
You are so brave & tough! Thanks for sharing your journey I really enjoy watching your videos💗
You’re such a nice young woman. 🥰
You're amazing. I admire you.
Took a little break but I’m back now! Glad to see you’re still doing well yinz guys!
I've learnt when something shows up in my body etc and I'm labelled "asymptomatic" that often means pre-symptomatic. Or not displaying the "typical" symptoms.
Kidney issues are the worst. I had an obstruction in my urether too years back and went undiagnosed forever, in and out of the emergency room for kidney colics at least once a month for over 8 months (I don’t otherwise struggle with illness so severe pain was always a cue that something out of the ordinary was up) - they noted the distension of my kidney several times and even saw the obstruction on an MRI once, and yet just sent me home each and every time without any treatment or even bothering to officially diagnose the underlying cause. When I finally got a urologist to listen to me it earned me two surgeries and a two week stay in the hospital for something that could have been an outpatient procedure, if anybody had bothered to take a closer look when it first started. Still annoys me.
Hope you are feeling better now 🤗
Wow I can't believe it's been a year already since your kidney surgery!!!
Wow it's already a year, I remenber seeing you talk about that like it was yesterday. Damn time flies, glad your better about that problem 😊
Wow!! Glad you’re finally able to feel better!!💕😺😺😺💖
I watched your berry video the other day and I thought that you looked healthy , happy, and relaxed.
I am, thank you!! ❤
Awesome video! Best of luck in the future.🙏 I just had my reversal a few days ago. I have no control of my movements yet. At this point I miss the bag.
I’m sorry, praying for healing
Thank you for all the information and I am so glad you are feeling better 😊 hope to hear from you soon I am hoping that they can fuger out why I keep gaining weight with my chron's...it's a constant struggle...Take care and keep 😊
Hi Maggie your sound was much better on that video i could hear every word that time, also like you i had the kidney opp i ended up with 6 scares on me but i recover in 4 days which i thought was good for me as i heal very quick and i do not have the other things you have, keep up the great videos Nick (in England).
I haven’t had an uti’s in a while, this year I’ve had 2 in 7 weeks. I have Sjogrens, fibro, OA and if you know anything about sjogrens (auto immune) it makes you dry out. Eyes, nose, mouth and “down there”. I have only one kidney in stage 3a kidney disease. I wish I could get all my doctors to talk with each other, but no. I’m 70 yrs old kidney has been out since I was 1 1/2 yrs old. Need to be more demanding. You look wonderful thank the good Lord.
I forgot to say you are looking very good !!
geez Maggie that's a lot of stuff in not really that long a time. At least you are on a better path and feeling better! :)
Oh, and because of the infection being as bad as it was, I have a colostomy for the rest of my life, as the infection ate up so much tissue and muscle in the rectal area.
Maggie you are amazing.
Congratulations on your one year anniversary Maggie. I know it's hard getting through multiple surgeries, and wish you healthier days ahead. I was recently in the Hospital, and a CT scan showed I have 3 hernias near my Ileostomy. Did you ever have a hernia after your surgeries? I hate the thought of needing a Proctocolecty (Was Dx'd with UC in 2020) and Surgeon is recommending it if hernias are repaired. Thanks for your help and support.
My husband dies because of clostmy bag.. 😭😭
He had 4 surgeries
I too had bad bladder spasms, mine were caused by scar tissue. They can be SO debilitating. I had my scar tissue clean-out (surgeon said it took 3 hours) and have 80% relief. I'll feel a twinge of spasms if my bowels are full so I try not to let that happen (prunes every day!) My surgeon says that some people are just adhesion factories after surgery and that he's worked on major abdominal trauma from car crashes and the person stays clean as a whistle after surgery, no adhesions! And then he has people like me, who scar up if you just look at them!
I was told that your body absorbs less salt from food after surgery to remove the colon. The nutritionist said I no longer needed lots of fiber but might need more Salt in my diet. I don't think I can post a link but will try to add one as a reply to this.
Link to pdf.. www.ouh.nhs.uk/patient-guide/leaflets/files/13241Pileostomy.pdf
Yes some of the functions of the colon are to reabsorb water, Vitamins and minerals. I had my surgery 11 years ago and have had to have regular iron infusions.
Brave brave lady. Salute
God bless. You look so happy......and healthy.
Hi Maggie. I had a kidney stone on March 2 2021. It was really painful. They also find out that I have a very, very little bleu spot on my liver.
Woohoo first comment! You’re an incredible human being
You Maggie is one hell of a women Zak is a lucky man.
I had a floating kidney that required a nephropexy to repair (stitching to back muscle). It is common for those of us who had a nephropexy to feel those kidney twinges. Sounds like you are experiencing similar because you had your kidney repositioned. Just wanted you to know that it is pretty common with stitching of the kidney.
bodies are amazing!!!! congratulations on being a total badass in the face of difficulty my girl
I go toget a cysocopy on the 4th and see anew kidney dr next month so scarce but you give me hope and strenght
I have had urine backed up into my kidneys before too when my Foley catheter got a clog in it it's definitely horrible pain and think it's on par if not worse than kidney stone pain
That sounds painful.While 8 mo pregnant, I had a bowel blockage which with the baby and how he was (I'm only 5'0 tall), blocked my bladder. It was screaming with pain, baby moved and my bladder released where i had no control. That pain was unbearable (had surgery and managed to carry him 4 more weeks), It was a specific issue, not ongoing issue, and still mentally scarred me. Can't even imagine the kidney blocked and that pain. If that specialist had paid attention and was proactive, would it have prevented or lessened your future pain at all?
Bless you Maggie💟💟💟
I love the top your wearing, very pretty!
I was wondering how your skin problems worked out. Hope you feel better. 😊
Three years I am using colobag..
I worry also about scar tissue. Apparently I'm the scar tissue queen as well. I had a stent for a month after my 14 hour surgery to, of course!, clear up scar tissue caused by complex diverticulitis. I felt I had to pee every 5 seconds. I couldn't have company over without worrying when they would leave so I could race off to the bathroom! Turns out that I had a biofilm infection on the stent, and needed Ciprofloxacin to clear it up. Also, although I got my ileostomy reversed and that wound has healed up, after a month I still feel like I have swelling and some loss of feeling in my abdomen (possibly nerve damage?) And some twinges around where I had a drain. Those are some deep wounds. I think this is normal? We will see. Not sure what normal is anymore, ha ha!
That's so infuriating that you will be sent elsewhere by your doctor, to a "specialist" who has no interest in figuring out the problem. They waste your time but refusing to investigate, and then in turn they behave as though you have wasted their time.
I wasn't super thrilled but probably should have pushed more. When I explained this to my current surgeon, he said that some tests should have been done just to ensure all was well, even if I wasn't having symptoms.
What were your symtoms for uti in october (after your kidney surgery)
I have so many questions. Did your blood pressure go crazy while all this was happening .I have bladder issues same as you .but have bad Dr's here in sw Colorado .
Thankfully no! My left kidney took over while rightie was struggling!
Hey, was the sepsis incident at all related to your overall kidney issue - Wasn’t that a kidney infection? Love your videos, I’ve had several kidney infections but thankfully seem to have aged out of my defect (fingers crossed).
It was! We didn't know at the time, but because that kidney kept backing up, I was getting infections in there that led to sepsis!
May i ask you how many time you change your ostomy? I have my ostomy too and i use hollister
Owww I'm so nervous.. This month is my one year anniversary of getting an ileostomy (and bladder ostomy), but in 6 weeks I'll be getting another surgery and ANOTHER ostomy: a urostomy..
So that's 3!
I'm so so so so nervous, because last year my pain was NOT under control..
(Because of my illness EDS, and also because I use morfine everyday already)
Any tips on how to get through the pain again?😅
You rock!
Hi Mags…I hope you don’t mind me calling you that…seems to be a pet name of yours from Zac. I can go back to Maggie.
Quite frankly, I don’t have Crohn’s disease or ulcerative colitis. I do have a very close friend whose granddaughter has just been diagnosed. She is young, maybe 12 years old but has a VERY positive attitude. The last picture posted was one of her injecting Humera with a big smile on her face..
I have tried to connect them with your site. I only hope that they do and learn from you.
Lotsa love to you, Zac, AND my pups. Remember, dogs are people, too.
Some doctors are really terrible. Just because you CAN qualify as a doctor, doesn't mean you should.
No agony.. no bragony.
Salt has iodine in it
❤️❤️
Try being awake twice during an emergency c-section WITH Gen anesthesia AND an epidural at almost 36 years old.
Pain? Yup! Got it. They call it a scalpel.
Been there. Done that.
I've woken up during resection surgery and with a breathing tube in, if that still counts. No fun at all!!
Hi email me please I have acid reflux and ibs too,I lost my two bffs
My daughter won’t even look at my bag I just wanted to talk to her about it but no
You are cute girl😘... thats why he has married u... i would to if i found you first👍