Just for those asking - I am drinking Nuun Electrolyte Tablets! Here is my Amazon link but you can also search it! amzn.to/3rofdhG

I've had a few nurses and a doctor tell me that their most knowledgeable and actively involved in their care patients are the ones that fall off the radar often because we are so proactive usually that if we don't stay on top of our care, the doctors don't. It was meant as a compliment because the doctor knows that if I'm having a problem I will absolutely reach out. The problem is that I'm so used to feeling not great that by the time I reach out and say "Hey, something isn't right" I'm basically on the verge of being admitted to the hospital for a flare up or going on a 12-week dose of steroids to get me back to a functional place. Don't be so hard on yourself! Even us veterans sometimes forget to be as diligent as we need to (and sometimes we just don't want to!).

You are so honest and helpful. It is so difficult and you handle this issue with grace and a a sense of humor. Thanks from an older urostomy pAtient.

I am also on IV fluids because of my ostomy. I have short small bowel syndrome and need not only IV fluids but also TPN. I have been on them now since may 2018. It’s tough as I was absorbing so little I lost so much weight my organs began to fail. Mine will be life long as I also have kidney failure and I need to be very careful to stay hydrated. Hope yours is going well ❤❤❤ love from a fellow ostomate!

You’re You Tube updates have helped me so much! I appreciate to work you do to share with us what’s happening. I’m a 4 yr ostomate still struggling with dehydration. My docs are deciding whether or not to have me do IV fluids at the hospital. This topic and your honesty about your struggles has encouraged me❤️

Maggie, you are such a sweetie. Please be kind to yourself especially on the hard days. Sending you big hugs!!

I think it’s good that you are highlighting the affects of chronic illness on your relationship. It’s difficult, I know. I hope you find relief soon. 🙏🏻

Thank you for talking so openly about all the things you are going through! I also have Crohn’s and am a colon cancer survivor (2013) and had to have total colectomy with ostomy in 2017. You made me tear up because your emotions are so on point with what I feel with experience with docs (you are right!!! So few working in healthcare, especially Gastro can speak intellectually about it) to similar kidney issues that seem hard to diagnosis (was diagnosed with ANOTHER autoimmune disease-Interstitial Cystitis- after 8 brutal months following removal surgery) to always downplaying symptoms because “it will get better” to the guilt and sadness I hear in your voice concerning your ability to function normally and fall short!! It’s a validation that only those going through same challenges can truly understand!! Please feel better and thank you again!!❤❤

Don't beat yourself up, Maggie! I don't have an ostomy, but I'm having a kidney out because of a botched operation.

I so wish KZfaq and you were around about 10-15 years ago. You would of helped me so much with my mom who got a colostomy in the early 90’s and we knew nothing about changing her food or anything.she thought it was normal to have basically water pouring out. She lived with so many issues. Thank you for what you do, I am sure so many people are helped by your channel!

Why don’t doctors understand just how important compassionate communication is to patient. 😢

If you find a good doctor who also has a good bedside manner become their patient. They are hard to find but they are true gems and care. ❤❤❤

Praying for you! I totally understand the feeling "useless" part of things! Give yourself a little grace through this. It IS ok to slow down a little and take some "you" time. That may not be what you want to do but it may be something you actually need to do for your body. Hang in there. 💜

I am watching this as a new stoma patient a year after you made this video, I have watched many of your videos. Thankyou for sharing your experience with us, your honesty and frankness are very much appreciated. George, Yorkshire, England

It really sounds like you have a good plan going forward. I am so grateful for the doctor you finally reached out to who responded. I hope the iv fluids help. It does sound like dehydration is an issue, so you might as well sort that out. Don't kick yourself. It's always easier to assess someone else than it is yourself. I just hope and pray you will be feeling better and more like yourself very soon, Sending love and hugs,

Sending so much love! I really hope you feel better soon ♥️

Maggie, you are such a trooper. Know that you are in my prayers. I hope you feel much better soon ! Good that you are a nurse and are so educated in your body function. Take care ❤

I had a terrible time staying hydrated with my illeostomy! Had to go to the oncologist’s office several times for fluid! My output never thickened! I no longer have the ostomy but I have constant problems with diarrhea. It’s a lifetime problem due to cancer. I think of you so often and what you go through!

Hope you feel better very soon, Maggie!! ❤️

I’m 74 and I will be getting a ostomy the 24th of may 2024. I have colorectal cancer and have completed radio therapy and chemo. Just waiting on my surgery. I have watched all your videos and want you to know all my fears have been dispelled. You are one strong five foot bundle of energy. Thanks for the info I have gotten from your videos and I wish you the best.

Sending lots of love to you and Zack. Get better soon ❤️❤️❤️❤️❤️

Thank you so much for this video Maggie. I hope the IV fluids help you and please keep us updated. Take care and wishing you well.

Feel better soon! I know how difficult it is to feel terrible all of the time. Hopefully the fluids will help you feel better. Zak and you are in my thoughts and prayers.❤

I'm so sorry you haven't been feeling well Maggie. You will get through this. It's not your fault that you're not feeling well and it doesn't make you unreliable. You're dealing with a chronic illness and your health comes first. Sending you Love and Hugs! Judi xx

I’m so pleased you’ve contacted a Dr as you’ve had these symptoms a while now. Hopefully the fluids do the trick. I suffer from fatigue and it absolutely sucks. I live my life like a zombie a lot of the time and don’t achieve half of what I want to.

Glad you've got a good Dr to turn to right now. Getting the IV fluids will help you dramatically!

Sending prayers and positive thoughts your way!

Happy (early) stomaversary! Mine's in October too ☺️ I hope the iv fluids give you the boost you need! 🙏💕

Hope the IV fluids help. Will say prayers for you. Thank you for taking the time to update on everything. ❤️

Praying you feel better!❤

You are a brave and sweet person. I will be praying for you.❤❤

I pray you get better soon. I am going this Wednesday to talk to a surgeon about a colostomy.

I just got home from my 6th straight day of IV fluids. Gastric NETs for some reason are kicking my buttand after 3 weeks of nausea, vomiting etc I called my local oncologist and here I am. I live a few hours away from Seattle, but thank God, my local hospital has an awesome oncology and infusion clinic. I am so out of it that I don't want to shower. Earlier this week I got up from a vomit session and ended up falling into my dog's water dish. Best of luck to you.

Hello, I am from Sweden and I have a ileostomi for 4 years now. I need to have IV fluid every night because my kidneys is not feel good. The nurse come home to me every evening and hook me up on IV and 3 times a week I had to get magnesium in the IV too. I have had kidneystones 2 times cause of my ostomi. Every other week they take bloodsamples to check my electrolytes. I have got some small bags with pearls in them to put in my ostomibag so it will be a little thicker output and not leaking so many times. Hope you got the IV fluid so you will feel better. Many hugs from Sweden...🤗🤗 By the way I have a port for my IV on my shoulder. It works very well.

Hi Maggie. Your video really hit home for me. I am year post sub total colectomy and it been really hard and I've done this whole journey by myself and I've had alot of admissions to hospital since having surgery. In the last few days I've been really struggling with my hydration levels.

Glad to hear you have been getting heard by the doctor. I appreciate your videos as I am not on Instagram. Will keep you in my prayers. ❤️

I HOPE YOU FEEL BETTER! i’m so glad you finally found a doctor you feel good about!! he sounds like he’s on the right track !! PLEASE don’t overlook the possibility of CDIFF-I had it after lots of antibiotics for sinus issues please get that tested!!!!!! If they can test your output from your ost.?t💖✨💖✨🐾blessings

Hope you feel better soon. 💕😊

Maggie, I hope the iv fluids help you to recovery. Wishing you all the best. Hugs.

you just described a lot of problems that I have, even though I don't have an ostomy. I think I need electrolytes? You're so educational, super glad I found your channel.

Thank you Maggie for sharing what you go through. I had emergency ostomy surgery earlier this year and butt surgery 4 weeks ago. Watching your KZfaq channel greatly prepared me for both of these surgeries and life ahead with my permanent stoma. Without you I would be lost, so thank you from Australia. I have a question, you broached it just now- why do things feel really bad at night?

I hope you feel better soon ❤

Hope you're soon better. Maybe this doctor will provide the excellent care everyone needs and deserves.

Sending you much love and strength, lovely, smart, brave, beautiful lady!!! I am right there with you with the fatigue and sleeping and brain fog as I not only have UC, post-colectomy, still have ostomy and j-pouch, but also fibromyalgia... 🤪😣 I hope this gets sorted out quickly for you so can finally feel better ASAP!!! 🙂🙃💖💖💖💖💖💖💖💖💖

So sorry you’re not feeling well. Having nausea this much must be a difficult situation. Get well soon.

I'm praying for you Maggie. I hope you are feeling better.

Your hair looks great!

Prayers for you, Maggie!

For my nausea, I’ve been prescribed Procalm; it’s doesn’t remove the nausea, but it does suppress it for a while.

Cdiff is no fun!! That’s the how I found out I had Crohn’s disease. Hope you feel better soon!!!! ❤️❤️❤️❤️

We wish you all the best! You’re so strong ,don’t let this make you crazy. Sure is easy to say for me , but running up hill for you .good luck !

I feel you, I get it. You got this.

I like hearing you speak, it relaxes me

I feel so blessed to be in the UK, I have a colostomy, as a result of cancer last year, since then I've have 3 MRIs, 2 Pet scans, x-rays, sigmoidoscomy, colonoscopy, all without worrying once about cost, and if I can afford to have it done. My nurse/ostomy support ring me, arrange bags to be delivered, again all without any cost. I think it would worry me so much to be in a country without health as a national service... I feel for your pains...

Maggie, sounds like this has been building up. Good someone cares enough to help you. Long road with tests and likely delays getting but in agreement to hydrate and stay that way for clearer results. If you find yourself needing more fluid than planned, you know being a nurse a pic is easier but more maintenance. Just take care of yourself and don't fret about content on you tube. We all will wait for a thumbnail or video. Your health and keeping your kidneys hydrated are far more important.

I don't like feeling crummy either, there's alot happening in my life also won't go into it , but I have felt very crummy all day, and I'm thinking it may be dehydration listening to this, I hope that's all. I'm a cancer patient not an osteomy patient. Anyway you have been an encouragement to me through the last few years. I'll be praying for you.

I've been seeing my GI since 2004. I adore her and trust her immensely. Now my insurance has changed, and I have to find a new GI, and I'm struggling too. Sending love and feel better wishes from NJ. 🌻🌻🌻

Hope it all goes well & you are just a big boost of iv fluids to pick you up again.. x

Maggie, no matter how I try to explain my problem to my friends they really don’t get it! You still have to live a fulfilling life! There is no real answer to these problems! Everything is day by day! You are so strong and such an inspiration for me!! I am 17 yrs cancer free but the radiation did a number on me and burned part of my colon. No one can understand this unless they actually go through it! An illeostomy is harder to control than a colostomy I think! I only had my illeostomy three months but as I said it never thickened for me. It’s tricky! I nearly got a colostomy to combat the problems I still have!

Hugs. Sorry, but at least you have a plan. I am also on IV fluids for a different reason, but it helps a ton. Hopefully you will feel more energized.

Hi again Maggie,thanks for the update and news re IV fluids. Just this past week I suddenly just pumped out so much fluid,yet had no actual blockage causing it. I was dehydrated the next day quite badly. I've felt just like you at odd times in the past and I say to my husband that I'm sure I need IV fluids. Unfortunately,no one really follows you up once you're home. I have had an ileostomy for 20 years, thought hiccups with it had finished,now with this week happening,who knows. Bron from Sydney Australia 🦘

God bless you and you are in my prayers.

I’m hoping you get the IV fluids soon and they help you feel better! I hope one day you can get the good Dr. As your regular Dr. It’s amazing when you have a good Dr. My regular gynecologist retired and got a new one and it’s a world of difference! I almost teared up she dad down had a conversation with me really cared about me! Not just in and out in 2 seconds and make you feel not human!!

I am so sorry you’re struggling at the moment. I know where you are and how shitty it makes you feel because I’ve been there and I’ve felt what you’re feeling so my heart breaks for you as I wouldn’t wish those symptoms on my worst enemy. I’ve been on TPN and IV fluids at home for a long time (I’m still only 25 years old so I get how hard it is feeling all those symptoms but then have thrown on top still being young and wanting to feel young and do what other 20 somethings are doing without either not being able to do it all or doing something and everyone else does it like it’s nothing and gets ups the next day good as gold but you feel horrible after and sometimes it takes days and days or longer to get back to baseline, like you’re paying for it for days or week after long something as simple as a girls night out or a board game night or trip to a Carnaval or concerts, anything really that isn’t just hanging around home takin* it easy). So these struggles are hard for anyone but it does add an extra level of struggle being young even though you don’t feel like you even are most days cause you feel 90) I’ve been on IV fluids daily for about 10years (before that I used a feeding tube from 12 years old and tried like hell to avoid going down the route of IV anything) but I’ve been on TPN as well for the last 4 years. I can say with confidence that ia absolutely despised the thought and also the actual starting of the fluids and definitely the TPN because I’d done everything humanly possible to avoid it so I felt like I’d failed myself by agreeing to start it. But I soon realised it was no my fault, I couldn’t help it, my body was just done it needed it to survive, I know for a fact I got to the point after avoiding it for so long that I almost died, my kidneys stopped working, my heart was playing up and my weight was low plus I had all the other symptoms you described as well. I was sick, very sick because I waited to long cause I thought daily IV treatments along term would be nothing but bad. But I can say with certainty they saved my life and not only my quantity of life but my quality HUGELY. I now work a physical job as a farm hand a few hours a week (never would have dreamt that ever possible), I ride horses. I play guitar and write songs and busk each week for a few hours, I am also now a first responders which makes me so proud of myself. I did the scary thing to avoid another scary thing, I was so hard on myself for feeling like I’d “failed” because I started IVs and I did it anyway despite being so angry and sad at myself but I trusted my doctors and I am so glad I did because it’s given me a life back. Sure it’s still not a life most 25 year olds would do, I still need breaks, rests and naps but I manage and I don’t sleep 23 hours a day and my kidneys are no longer in kidney failure, i still have some issues with my heart but it has improved some those years ago. So I know it’s scary and it feels like a step backwards but I promise it’s not. It’s just another tool in your tool belt to help you have the best quality of life you can and if having IV fluids will improve how crappy you feel even by only 5% it will be worth it and it’s nothing to feel bad about or disappointment in you body for, it’s just something you are doing to better your life, there is nothing wrong and nothing failed about that, you can’t help that no matter what you have done you’re body just can’t work the way you need it to and that’s through absolutely of fault of your own. It’s a step forwards and something worth giving a go. If you find it’s not helpful and you still feel the same like it not helping then you can change the plan and not have them, there is nothing wrong with trying and seeing what happens, nothing is final, this doesn’t mean you’ll be stuck on the,m forever like myself, sometimes a break and timeframe on them will be enough to give you body the pep it needs to reboot and start feeling better again and then your body might click back in and be able to maintain without them even if you get the odd infusion when you start to feel off to just give your body the boost it needed. Weather or not it’s something temporary or ends up being a little more long term then you’d hoped just know you shouldn’t be upset or mad at yourself because it’s okay to do these thing a if you need to, if that’s what your body need then there is nothing you can do to change it, you’ve already done and are doing all the right things so you should be proud of yourself for trying your best cause that’s all you can do ❤️ you’ve got this! With any luck you will feel like a whole new Maggie after you get some fluids in your body and this will be a positive change to help you and help your body thrive ❤️❤️ as someone who has done this for a long time, if you have any questions you’d like to know to make it a bit easier and less daunting I’m happy to answer any I can if you’d like and think of any 🥰 best of lucky Maggie, keep holding on cause you can do this even when it’s hard you can do it ❤️

Maggie i know how you feel not being able to do stuff i get you as i feel the same. I want to wish you new health and energy. Lets hope you get sorted soon. In mean time im sending you good vibes your way. ❤️❤️🌈🌈⭐️⭐️xx

I can so relate to what you are feeling. I know you don’t like the idea of resting and taking it easy and that you want to just go,go,go. Fact is, you (we) need to discipline ourselves to rest and and relax and take it easy to be able to keep going. What we have, at this time, is not going away. I cannot make plans due to Crohn’s as it does caus us to become unreliable. I don’t like it either but that is the way it is. Sucks, I know. I am 73 now and because of disciplining myself to listen to the warnings my body gives me and addressing it is why I have made it to 73 with an ostomy of 32 years. I feel better then when I didn’t have an ostomy. Slow it down Maggie, yes it is hard to do when your used to being active, but you will not regret the slow down. You will get more done with less interruptions. It’s a work but it can be done. Much love sent your way!💞

Oooooo Maggie, Good bless you sweet Maggie 😘

Sending you some ❤❤❤❤❤

I tried Nuun, Liquid IV, and many others. I’ve found Drip Drop to be the most effective for me. It’s sold online and at Walmart. have Short Bowel Syndrome and rely on IV hydration 1-2x a week. Sorry you’re struggling right now. Hugs!

with my crohns white rice works great with some chicken and vegtables might be something to try

💗💗💗💗 sending you healing love….

I’m just now getting over c-diff. Never had a different smell.

Also, Gatorade has a new salty drink that tastes great, watermelon something flavor, it's yummy and was on sale at Aldi recently.

I have one "good" vein. Years ago, I had to have blood work done every month (to check my anemia). One month, the tourniquet kept popping off my arm. The tech asked if I trusted her because if I did, she would try it without the tourniquet. I let her do it and it wasn't painful, didn't take multiple attempts, and didn't leave a nasty bruise. It has been the only vein they can find without ultrasound. In my phone, I have exactly which vein works and how far down they need to start so the iv machine won't say it is occluded on patient side.

Sweetheart I hope your shoulders are lighter now. You don't need to be hard on yourself please. Your symptoms are the same as mine lol. Now I need to see my Dr asap. Your a beautiful young woman with so much ahead of you. We learned from our mistakes and now utube lol 😂. God bless your healing your in our prayers. Xoxoxoxo

I had the same problem like they put IV fluid and sport drinks. Good luck and I hope you will feel better soon 🙏❤ 💕 💗 🤩❤❤ you should have excellent doctor that take care you 😊 😘

I just wanna say STOP! Stop “shoulding” on yourself. I should be able to do this. I should be able to do that. You are an AMAZING, funny, intelligent young woman who is dealing with a very complex and frustrating health situation and yet you are handling it with tremendous aplomb AND teaching us a lot as you live your life. So PLEASE stop being so hard on yourself. You WILL feel better, but right now your body is asking for special attention - and you WILL figure it out! And also, I have no doubt, you will continue this journey with the grace you show every day. Hang in there. 💜💜💜

Maggie, I just looked up NUNN and that blueberry tangerine flavor looks great. what is your favorite flavor and are you able to do a sponsorship from them also can you link them up in your post? This was a great session on dealing with the medical world and advocating for yourself even after 13 years and being a nurse.

Might seem like a random question, but have you ever had your 8-9am cortisol levels checked? All these symptoms are so familiar and after a long time of wondering what on earth was going on I was diagnosed with Secondary Adrenal Insufficiency due to treatments for my Crohn's (prednisolone and opiates). It had been slowly eating away at me, but the weight loss, dizziness, dehydration, extremely active gut, fatigue became unbearable. It was just a thought I had because it really wasn't something that was considered for a long time (because I hadn't had steroid treatment for quite some time at the point I was tested). My baseline was 67 and have now been on hydrocortison replacement for 7 years.

I hope and pray the Dr’s do find a solution to your sudden illness and a speedy recovery. Good luck and don’t stress on informing us at KZfaq as we will always be here when ever you are healthy enough to talk about it.

A thgt...has any with this surgery tried CBG, CBD and or RSO included making suppositories for the front door? It helps with inflammation, severe pain along with healing a lot of things. Gosh, it would be great if it helped.

When they ask if you’re ok, and you know they won’t like the answer…. Cause it doesn’t really change. I felt that. ❤ I don’t find that phenergan helps with my nausea, but it is something I take when I’m extra stressed, I found domperidone to work better (well that’s what it is called in the UK. Hugs to you… 🌺 and my middle name is Margaret (Maggie) 😊 and most nurse practitioners are just really bad , all over the world lol. Xx

I don't have an ostomy, but glaucoma and the only good ophthalmologist who took my current insurance stopped coming to any convenient location near me and the hospital system didn't even tell me. I tried to get an appointment for a sudden issue (which thankfully resolved itself), realized it, and then tried to frantically find another one only to realize that NO ONE takes this plan. So, the last one I had was absolutely amazing and I'm tempted to switch during open enrollment just to go back to him. I can get a new primary care, I haven't seen my therapist in almost 3 years, and the cost for care from him would be 100% worth it to me assuming my medications are covered. I'm sick of the runaround you're describing. And if I get in there and he tells me he's retiring, I'm throwing a fit and making him find me a new one!

I’m sending lots of good, healing vibes your way and you are very much in my prayers. I’m sorry that you’ve gone through so much. Best wishes and blessings to you and Zach.

As you were talking about your symptoms my first thought was girl you have c diff, you listed off just about every symptom. I have IBD, no ostomy, and I have been in and out of c diff hell for the last 3 yrs. I will definitely send good thoughts your way that your test comes back negative for it.

Oh hey, I am on “opium tincture” and It’s working for me. I have a very high output ileostomy and go for fluids twice a week.

Thanks

Well,you do what you can do...See you round the bend.

I relate, my house is a mess too

My wife has gotten to the point where she MUST have IV Mag 4gr. every other day to keep from brain lock. I also is messing with her Transplant (kidney). All that IV MAg is now making it so she has to sleep about 18 hours a day and then "foggy" in the head and on Zofran for to up set tummy... On a good day her Mag is a 1.2 . Her Doc's are at a loss The last ten years have been hard......🙏 @14:02 How many times my wife has told me, Doc's...everyone the same thing.

IV fluids are a great idea. Would be nice if they could put a little vitamin B or and C. IV fluids are extremely helpful. I hope your able to get IV at least a couple times a month. ❤

What are the dangers of anti-nasua medication? I've used it daily for two years now so I'm spooked. I'm keeping you in my thoughts. I'm so sorry you're going through this too.

Good care is hard to find. I had to leave my gastroenterologist recently because they had constant roll over after my first doctor left. Need to get Barbie butt, but the loss of time and gym is difficult to accept.

I had Crohn’s also from 2019 to 2021 I was on iv and TPN every day doctors at Cleveland clinic told me your going to die by June 2021 if you don’t get a small intestine transplant, I got it March14 2021 I’m still on iv fluids 2-3 times a week but hopefully soon we will be able to stop.I have issues with my stomach it’s called bacteria overgrowth makes my out put like water not smell good and makes me nauseous terrible I understand your issues well from 2019-2021 I couldn’t do anything walking to bathroom I would almost pass out😞hang in there they will get things figured out prayers for you Maggie 🥰❤️🙏

Hi Maggie- Thank you so much for your videos- wanted to ask if you had your thyroid checked? It could be the lighting, but at one point in video, I thought there may be some swelling at your neck. Just wanted to reach out... sending love and well wishes! 💛

I got my illeostomy surgery 3 weeks ago. I want to be up and at it but I just want to sleep for hours which means I may not drink for hours. I am also on a fairly simple diet for the first few weeks. My stitches slit my skin open which really stings. Don't know if I am being the patient that I wanted to be but don't have the energy to do any better at the moment. So grateful for your wonderful videos. Any thoughts ??

Helps if you put water in the fridge before drinking.

So your GI follows your care? My surgeon does. Makes me wonder if I need my GI to see me too.

I've had chronic fatigue for over a year and shortness of breath

Can you get C. Diff. with an Ileostomy when you still have your colon? I’ve been losing a lot of fluids over my ostomy in recent weeks. I’ve been hospitalised several weeks over the course of the last two months and received IV antibiotics. Since I’ve only got about 30cm of small intestine left, I’m on TPN. My output is always pretty much the consistency of water and also quite without a scent, or it smells more or less like the things I’ve eaten or drunk. But recently, I noticed my output smelling very foul, like rotten eggs. I’ve never heard of C. diff. before you mentioned it here. Does that sound like it?