Every video that I've watched that is sitting down chatting in the intro, I think ooh that is a nice jumper/sweatshirt! So I keep browsing for sweatshirts online, but it is so warm in the UK right now so I can't be wearing jumpers! ❤
Happy day Maggie God is with you forever take care and stay healthy keep telling your beautiful story you are the best friend your channel the greatest
Hi Maggie. This is a nice homely video. Thanks for sharing. Those burgers looked nice. I have had to give up bread, pasta, etc, on account of not pooping but I long to be able to eat that again with my fish.
I *always* get stabby butthole pain every cycle during the ovulation period, I dunno why! But it hurts sooo bad. Glad to know I'm not alone *hugs* that is weird you still get them even with no booty hole! I also get lots of vulvar pain and that hurts like heck too. I have PCOS and PMDD so I've just assumed it's related to that.
I have those rectal spasms also. The only way I can get them to stop is lay down on my back with my legs flat also. It takes a few minutes until they stop but it works every time. Sitting doesn’t help me at all.
God bless you for your valuable input. Before I go to bed' I take off my 2 piece then use a water bottle to spray any pancaking around the top. I haven't had a leak since
I wondered about the sleeping time with an ostomy, I guess the body simply learns. I wonder is the phantom pain (in an area without "the usual equipment") analogous to the phantom pain people can feel with missing limbs? Hope the infusion and the weigh-in went well.
Maggie: A dog will be a dog. If you're sleeping they just love to lay on you. Maggie, if you need a cyber brother, I love to fill the position. May you and Zak have a good 4th of July.
I’m totally in love with you and Zak. Your energy is so upbeat and positive. I do not have your illness but I’m drawn into your stories. Very informative and interesting. You seem like you would be an awesome RN. I’m new to your channel. Is your illness why you don’t work anymore?
This is a serious question: Can you sleep on your stomach? After you got up from your nap and showed us your full bag, it occurred to me that you probably have had to train yourself not to flop over onto your stomach in your sleep. Thank you for your videos and for demystifying a condition that most of us are aware of but know little about.
I have an ostomy because I have no bladder so it’s a little different but I do sleep on my stomach sometimes and it will get just as full if I drank too much in the evening. It’s been a year and a half still getting use to it.
To Maggie, Cherie, and Wendie: Thank you all for responding to my question. I almost took it down after posting because it occurred to me that it was just nosy. But it also occurred to me that one of the reasons that Maggie does these vids is to teach those of us who haven’t suffered through the pain and frustration that you folks have about what life is like with your conditions and the challenges in adapting to the “modifications” required to treat them. Having no experience myself, I wondered if flipping over on one’s stomach with a full bag during sleep could lead to disaster. Or at least a mess that is so much worse to deal with when you are half-asleep. You all deserve the greatest admiration for dealing with what you have all gone through - and are going through. We all do what we have to, but some people have more obstacles thrown in their paths. I wish you all well.
I sleep on my side (right more than left) and roll toward my stomach and don't have a problem with it. Also, it cracked me up when you couldn't think of the word griddle. I thought those senior moments only happened to people my age and I'm 43 years older than you.
07:26 You mentioned rectal spasms. The culprit could be those tricky Prostaglandins. Because a person who doesn’t have part of their bowel tract and an anus anymore can still be affected by Prostaglandins at anytime but in particular when women have their monthly Moon-Flow. But of course if it becomes Real bothersome and gets super painful get it checked out ( which I’m quite sure You will Maggie)….. Going off on a tangent here, I know. Just wondering “out loud “ so to speak. Could prostaglandins be one thing that’s involved with Phantom Limb Pain……. ⚛️☮️🌏
I thought that you two were pescatarians? 🐠🐟. Did I imagine that or did you change? I am so glad that I am not the only Crohnie/Ileostomate that has to nap. I can get a decent sleep at night and still need an afternoon=/early evening nap. If I don’t, like you mentioned, I have to go to bed early and can’t spend time with my sweetie or will fall asleep on the couch while watching TV.
@@LetsTalkIBD I try to never question anyone about their diet as I suffered with an eating disorder, but I was curious as to whether I remembered correctly. We are trying the Mediterranean diet as it is good for reducing inflammation. We’ll see..,😎
Do you have a video on what happens with your weight when you have your colon removed? I've just found out I have to go through this so would like to know.
Hi :) Have you ever considered getting checked for endometriosis? I don't have any ibd issues, I just enjoy watching your channel :) Through the age of 17 - 19 I had a lot of issues which worsened each month (at some point prior to my periods) where I couldn't go to the bathroom due to feeling a lot of pressure to where it seemed like I would break some nerves whenever I needed to go. Got so bad I went to the Dr, got prescribed the pill, it helped with symptoms. Went off the pill and it returned, although milder. I ended up getting surgery to having the endo and scar tissues removed. I haven't had issues like that since.
@@LetsTalkIBD Just looked up adenomyosis. I've never heard of that one before. Maybe that's what's causing it, pressure being pushed towards that area. It's amazing how resilient us females are with everything we have to go through. And to the ones who have some sort of illness/chronic illness on top of all that, you guys are the epitome of resilience ❤
Are you ok to eat tomatoes? I haven’t had tomato in 9 weeks ( since operation) and I love them. I’m not sleeping very well at night as I keep getting pins and needles going down both legs and can’t sleep, don’t know if that’s from my colitis or something else , a month before my proctocolectomy I found I had a growth on the base of my skull and this might be causing the pins and needles , I’ve had both an mri and a CT scan and they don’t think it’s serious but still need it looking at.
I’m 8 weeks out from surgery. How many times a night do u have to empty your bag? How many times during the day? I just having a terrible time getting rest n napping.
Maggie do you get you in the middle of the night the empty your pouch /bag ?? Something I have to. Yesi wake up also An I check mine few time I'm middle of nite I have a pad on my bed just in case of leakage...
Luckily I don’t have these deseases but found your channel. Your videos are interesting. What happens to the gases inside you? Do you still have them? Is it different when everything is shorter?
Your night routine is similar to mine without it I would be lost and my husband is like yours very helpful and supportive...oh my spasms happen after lifting something heavy...could that be why you have them?
I wonder if you have adhesions or scar tissue. Next time you see your Gastroenterologist ask. Everyone who follows you on You Tube has some idea or remedy so I guess I am not alone in offering unsolicited advice. Forgive me! That is a griddle. An electric griddle. They are fabulous. My mom had one and so did I when my kids were little. I had one of those pastry bags and a narrow nozzle and I would make breakfast initials for little people. I would spend Sunday mornings flipping Cs, Ms, Rs, Ss and Es. Your bedtime routine is lengthy and you think it is different because you have an ostomy but mine is also lengthy because I'm old, have night meds, a crazy oral hygiene routine to prevent dental bills, and I also go through the face cream thing. So, not too different. You empty bags and because I have irritable bowel I spend lots of time in the bathroom too. You get used to it. Well, I did, anyhow. Odd what we share on line or in comments, isn't it? But that's what happens on your channel. Sleep tight!
Please don't lift large heavy bags. Adding a hernia to your list of ailments would not be good. This is the 1st time I've watched your channel. I had that surgery 20 years ago. I appreciate what you share. Blessings!
