IV Fluids | Getting Prescribed, Cost, PICCs & Ports | Let's Talk IBD
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- Опубліковано 29 чер 2023
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I get a lot of questions about how to get IV fluids prescribed and what it looks like with insurance. While this will look different for everyone, I talk about my experience starting them, the cost of intravenous fluids, and why I do not have a central line or port implanted in order to do this.
For 𝐛𝐮𝐬𝐢𝐧𝐞𝐬𝐬 & 𝐜𝐨𝐥𝐥𝐚𝐛𝐨𝐫𝐚𝐭𝐢𝐨𝐧 requests ONLY, please reach out at maggie@redefined-agency.com!
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*This video is not meant to diagnose or treat any illness or condition. This is for entertainment purposes and to get you thinking! Please ALWAYS refer to your physician for medical care.
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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
![ЛЕБЕДЕВ у ДУДЯ: муху не обманешь 😁 [Пародия]](http://i.ytimg.com/vi/E74h5fvVrqs/mqdefault.jpg)
I have not heard anyone say boojie ( sp) in a long time and i use it all the time. My son always tells me not to say it because no one says it anymore. I just got proof they do! Thanks Maggie! You get your fluids and don't feel bad! Get what you need so you can feel better and live comfortably
I have good veins, but they are tiny and tend to roll/hide. After almost ten times trying to get an IV started and it taking numerous times trying to get one started for biologics and iron infusions, I got a port. As Maggie says why it isn’t right for her, it was the right choice for me and has made IVs much less traumatic for me. We may all be on similar journeys, each pathway is individual. 💖 KymPossible
That's great they gave you a port. I still have bruises from a hospital stay 5 weeks ago
I'm actually in hospital watching this asking for extra IV fluids as like you do. I have a full ileostomy, so anything I drink goes straight into my pouch. I'm always tired and very dehydrated . The Dr's are reluctant to give me fluids even though I have no visible veins and often have a low blood pressure. This has been such an informative and brilliant video for me. It couldn't have come at a better time, thank you xx ❤️🇬🇧
I hope it all goes well for you
@sakaimae Aw, thank you so much! Luckily for me the Dr on call last night agreed to put me on fluids so I'm still in hospital but at least I'm getting hydration. Nurses keep telling me to DRINK WATER but they just don't understand that not everything I drink ends up in my bladder! The water I drink comes out of my stoma! Go figure,.. thanks again for your lovely message. Xxx
Try drinking oral rehydration drinks like Drip Drop and Liquid IV instead of water. My doctor told me not to drink water. He said I should be drinking ORS or Oral Rehydration Solutions.
Suggestion: if your going to get infusion to hydrate or anything you do t want to have a picc line or power port (upper chest under the skin access line) and your hard to get a iv started, your encouraged to ask for a ultrasound iv nurse to start your lines. Much less trauma or fears with getting an IV. We use it in the Ped’s Floors when I worked that floor.
@alaskan3304 Thank you for this, and yes one time they did have to use the machine to locate a suitable vein to stab! My canulas never last more than 2 days so I have problem veins! Luckily I tolerate pain well and don't mind getting jabbed in my hands and arms to find a suitable deep vein! Thank you for your lovely message. X
I get IV fluids and Mag weekly..I dont know what i would do without it! My.nurses are so wonderful. They've never asked why they can see I drink 120 plus ounce a day and it's goes out immediately.
Recovering from Leukemia and i had a picc line from May of last year to this January.
I had a hard time staying hydrated after a stem cell transplant so i was off and on a liter of hydration daily off and on nov to jan. (A week on than a week off depending on creatinine levels). Part of Christmas dinner was 5 hours hooked up to the iv. Luckily i had access to home care living in Canada.
Btw, don't feel like you are not "sick enough". If you need it, you need it.
I had a temporary illiostomy and that created a major hydration and nutritional challenge. So yup, got a PICC line installed, and had a nutrient pumping session every day for three months before my ostomy was reversed. Plenty of surgeries and re-admissions before and after. My Crohn's/colitis hit in my forties so the struggle has not been as long or as hard as thine. Health problems persist though. Saving grace, apart from actual grace, is being in Canada, nearly all costs were covered.
God bless and keep thee in thy struggles!
I just got my temporary ileostomy 9 days ago. It’s been a struggle staying hydrated since day 1. My husband fought to get me on IV fluids while in hospital. Now I go to hydration nurse to get IV fluids every other day on my own. The reversal cannot get here soon enough. I feel like I’m slowly dying.
I have been receiving Iron infusions for 5 weeks. I went to the infusion center. They have mostly cancer patients there and at first I felt really weird going in there. Like you said "I am not sick enough to be here." But I was, you just couldn't see my illness. My hematologist has said that this may need to be an on going thing. It depends on how long my body retains the iron.
The infusions made me feel so tired also. I would receive saline at the same time I would receive the iron. I was there for 3 hours each time because they had to infuse it in slowly due to my reactions. The nurses would ask me what brought me there and I would go through the that I have an ileostomy. Once said one sweet nurse took care of me each time after that. I have difficult veins also. She would put hot packs on my arms to bring out a vein and then used pediatric IV needles that helped so much. Wondered if they were using them on you. Big hugs and blessings to you and Zak.
I get IV fluids, 2 liters twice a week. It's always irritating how exhausted I am after infusion. My infusion takes 4 hours because my veins have to have the fluids run slowly. I don't have an ostomy of any sort, I just cannot drink more than a liter and a half in a day and the doctors can't find out why.
I'm so glad the fluids help you!
I was a pediatric nurse in the states for 27 years before moving to France. I do know health care in the states but hearing about the costs is heartbreaking. I was diagnosed with stage 2c melanoma in February and have 2 surgeries, scans, blood work and receive immunotherapy treatments every 6 weeks. I have paid €55 out of pocket.
Anywhere is less expensive then the great old US of A
The #1 cause of bankruptcy in America is medical bills. It’s so tragic. 😢
That you had low blood pressure probably shows that you need the fluids, I'm very happy you where able to get this hope more people with chronic illness who need it can get this chance.
I just want my Dr to listen to me!
I'm sorry they are not!!
You are so very inspirational. Your medical challenges do not define you but have given you the opportunity to bless everyone with insight into what life can throw at you, but not overtake you. I’ve watched several of your videos and enjoy them for the medical stuff which I can relate to as a retired CRNA and remembering when my wife worked as an ostomy RN way back when. Continue to be open and best wishes to you and Zach. The journey as you know is with each other.
I had to get fluids with my illeostomy too. I thought it was just me! Tried to drink enough liquids but my ostomy was always liquid. It never thickened. Mine ostomy was reversed after three months.
I am so happy for you. I have an illiostomy and now have an IV that I use almost every day.
Congratulations 🎊 It makes me happy to hear you had you illiostomy reversed. That is great!!
Not sure this applies to you, but Zoloft increases intestinal motility. Wanted to mention on the off chance that you’d find the info useful; take care
Hi Maggie..I think it is wonderful that the iv fluids are helping you.
I understand about getting doctors to help. My husband has severe IBS and just can't get a doctor to work with him to help him feel better. It's so debilitating for him. I'm glad you were able to find a doctor that helped you ❤
Mine has gone nuts this year. It got so bad I spent 48 hours in the hospital in February. My oncologist was nice enough to prescribe fluids for me and pull strings to get me into GI to figure out what’s going on. It looks like I’ve added pancreatic insufficiency to my list of complications.
I would stick with IVs as well. Blood infections are a no-go. I hope you had a great nap and felt refreshed
This you are not sick enough to be here - at my rheumatologist I am always the youngest and I can tell they think I am here to pick up grandma until the nurse calls my name.... and then their face changes, they start feeling sorry for me
Maggie here in ireland i can go into hospital anytime for fluids once my gp says so and i dont have to pay a bolous works wonders
I watch your channel because I admire how you are after all your surgeries, your husband is adorable plus all your beautiful dogs❤
You are such a strong person. I have had chrinic ibd and suddenly i feel i have symptoms of crohns but colonoscopy is expensive . Can crohns be detected without colonoscopy. But still i am way more broken than yiu and seeing you i feel so motivated to live life despite the challenges it throws ughhh rather it slaps on us. Seeing you well dressed and all i dont even brush my hair have been so depressed. Respect !!
I had an emergency colostomy, then reversed an had an illeostomy, then finally reversed after my chronic wound finally healed. I will probably still always watch your channel because you are so inspiring and I love Zachs smile and the way he supports you and most of all, I love your intro!
So much teaching being done. Great!
Love the shirt and the braid. You look sharp today.
I have a port
Left subclavical
Right below my left shoulder
I have it for chemo
I had a picc too but only for my first round
I have had crohns for 30 years now and have had 30 inches of my small intestines removed. I am on a six week infusion of Remicade right now. I still have a fluid intake and vitamin intake issues. Some days are a battle. Hang in there I know your fight all to well.
Thank you for sharing 😉 All the best take care.
Wow thank you for explaining this.
Great info, I've got a temporary ileostomy that definitely causes electrolyte issues, if I drink enough it flushes out theu the ostomy. An hour to get iv fluids also, without a/c in my vehicle, and my labs are "ok"
Thank you Maggie.xx
Pediatrician with Type 1 diabetes since 1970 here. Wonder if IVF are diluting your RBCs temporarily to cause mild hypoxia (enough to make you feel tired)? Agree on risk vs. benefits of IV access q2 weeks. Love your candor about "chronic medical conditions" like so many of us struggle with behind the scenes ;-)
Love your channel Very informative
Bless you, I couldn’t handle this. Don’t know why I’m here, but find this very interesting. Tfs such personal stats.
Temperature of the bag can effect how you feel if it’s too cold. Bring warm clothes or blanket or heating pad if they let you use it.
I found this stuff called liquid IV in the pharmacy that I've given to my mom several times and it seems to perk her up😊 Maybe including that in between your treatment days would help.
Also have a port finally
I love your story you are amazing
My picc line helps a lot. Currently on loperimide, octreotide, mag, potassium, sodium…… weekly blood draws. We are hoping I’m out of the woods with my kidney injury due to all my dehydration and electrolyte imbalance rofl. Numbers looking good. It’s been a real PITA these past 2 months. Got in a car crash and wasn’t expecting any of this. 😂 gonna put more superglue around my stoma tomorrow when order comes in. 🙃 I sure hope they can put me back together in a few months.
Hair video! love the braid!!!
omg $460 ! Week? See i could never afford that. My illeostomy runs 24/7 and no stopping it. My insuramce couldn't get TPN covered at home which u stillnquestion but am stankful for weekky fluids. I have lost 50lns and cancer so its life changer for me. Mag is and was sooo low.
Is there a possible way when you feel comfortable to ask your doctor for a standing order for fluids so when you need them to could come in?
Don’t know why so many doctors are anti fluids. Even in the absence of chronic illness, there are so many cases where people feel terrible and struggle to get ahead of the dehydration.
When I worked in long term care we had a facility doc at one point that was actually a big believer in fluids and had a liter normal saline up to once a week as one of her standing PRN orders for all the patients (aside from 1 that had end stage renal disease and some modified orders because of it).
You have grandma who doesn’t drink well anyway eat something that didn’t agree with her and have a rough 24 hrs? Or get a really bad upper respiratory bug and not want to eat or drink for a couple days? Just the dehydration alone can cascade into delirium, increased fall risk, increased risk of UTIs, increased risk of cardiac events. So the nurses being able to run that liter of fluids to help someone who is unwell catch up I feel like kept a lot of our residents out of the ER. The nurses didn’t use it frequently, but it was a nice tool for them to have.
In Australia some GPS are asking people to pay a fee now.
People with a pension still get bulk billed. Hospitals all take bulk billing and we don’t pay a cent for their services. Australia is the lucky Country.
Thank you❤
I have small veins that roll and hide and it’s a whole circus every time I go to get blood drawn or an Iv. I wish I could wear a badge that says “send me to your best vein expert” each time but I have to go through the same old “ have you drank enough? Where do they usually find your best vein?” Etc etc The answer to that is I don’t have a best vein. They are all pretty evasive. Lol
You are looking great!
I guess some people like to live on a farm but I wouldn't because it would take so long to get to the hospital for emergency
I’ve had my port for 13 months it was the best decision of my life. I have GI birth defects, born with gastroparesis 32% lung function with chronic pneumonia needing IV antibiotics regularly. And many other conditions.
I have no veins left, the breaking point for me was I lost the IV over night the nurses then spent 2hrs trying o get an IV 28 separate tries, it then took me 6 months and therapy to get passed that (small town I was sent to bigger hospital 1hr away for a PICC) the breaking point for my doctor was that my lung collapsed I went into respiratory failure I almost died I was sent to the ICU in the hospital 1hr away, when in ER the anaesthesiaologist put in 4 IVs knowing my history within 12hrs all IVs were lost I was in ICU they couldn’t get a vein I was sent to the OR the next day to have a port placed because if I went into distress again they couldn’t give me any drugs. I’m in Canada so cost doesn’t factor into it.
I just started IV fluids yesterday. My doctor started me on Lacatated ringers twice a week. Had it not been for one of your videos a while back about fluids, I would not have been as forward about asking for them. I noticed in the video you put out about fluids yesterday right after I left my fluids appointment that you get normal saline. I wondered why the doctor would order one versus the other. I have messaged you and commented on several of your videos, because it is almost eerie that we have so many things in common. I’ve gotten to a point where, if I take too much, Imodium my output stops. I have a peristomal hernia I got about a month after surgery and it is slowly getting bigger and more uncomfortable! When it slows down to much my hernia gets huge! But taking lower doses doesn’t do anything. Lomotil made me really sick and gave me cramps. I have been prescribed a powder called cholysteramine to mix in with my Gatorade to drink before every meal and pancrelipase tablets to try to bind some of the bile acid, but so far, I am still dumping food out at quite the rapid pace and unable to gain weight. I am nauseated 90% of the time and don’t really have an appetite to speak of. I feel very hungry and then when I smell the food, I get very nauseous. I do take promethazine. It does not make me sleepy at all, but doesn’t seem to be helping a whole lot these days either. I am unable to tolerate Zofran. I get terrible migraines with it. I hope to be able to talk to you one of these days. Sincerely, Cindy
I’m new here, just found this channel, read your post and can relate! I have something called Hereditary Alpha Tryptasemia, which causes symptoms similar to IBD and I also have gastroparesis, delayed gastric emptying. Nausea, vomiting and weight loss/inability to gain weight are constant battles for me, so I’ve been receiving IV fluids every day for the last 15 years at home. I used to work as a GI nurse before becoming so ill I was forced to leave work. The choice of replacement fluids is usually determined by your provider after an analysis of blood electrolyte levels , your symptom patterns and a consideration of how much fluid will be given. If you need a fair amount of electrolytes with your fluid, Ringer’s Lactate or Plasmalyte is usually selected! I’m always deficient in sodium and potassium only, so I get normal saline (0.9%) and liquid potassium to put down my jejunal feeding tube! It’s usually very specific to your individual needs! I have a huge problem with nausea and vomiting so I, also, have been getting promethazine because I do not tolerate Zofran either! It’s really the only thing that helps with the really intense nausea that I have almost every day. I’m so glad to have found Maggie and this channel! Thought I would just say I can relate, sometimes it helps knowing you’re not alone! Hope you feel better!
I get 2 L of fluids 3xweek. My doctor and my nephrologist work together on this because dehydration caused my to have kidney disease. I have a central line because I'm a hard stick. Additionally I used to have to take TPN. I also feel tired after infusions. I am so glad I have a line because I would have to be stuck twice or more each time. No thanks😅
Has GI done anything to try and figure out why your ostomy output has changed?
I get dehydrated and sometimes I get delirious and end up in hospital. How much separately does all your products cost. Bags flange paste etc?
Tip from someone after 20 years in your shoes/ completely the same u have and more;( u can take loperamide, it’s stays fluid but it doesn’t run that fast. In my country everything is covered anyway, but I am 50 with a ton of surgery and many many month hospital time, u have to think about your veins, over time the visible ones collapse and than u don’t have a lot of nice options left. So if it’s extreme take the meds to slow it, and if u need iron and stuff take an infusion. Just tripple the electrolytes/vitamins for a few weeks (look that they drinks stay alkaline) and drink spread over the day about a gallon if possible, if it just runs trough it doesn’t help to drink more. I got other problems (zystic, bones, tendentious, insomnia, Epilepsie……) but I am not dehydrated anymore. It’s totally forbidden from doctors now, but try a cigarette. For me it works for others don’t (but don’t start smoking;) one or 2 cigarettes is not bad, living in New York is like smoking 30 cigarettes.
I actually do take loperamide and lomotil - sometimes works, sometimes doesn't unfortunately!
I have had an iliostomy for 18 months now, my output is always liquid and I even take loperimide and imodium 3-4 times a day. It seems like the more i drink, the more output I have. because of this, I get up to 4 bags of IV fluids a week.
I am going to be going in for another surgery in the next month and hope this might improve my output.
The more you drink…. The more output you will have. It’s a balancing act of medication and careful moderation of amount of liquid and electrolytes to make output mush that moves slow instead of waterfall that kicks out all of your electrolytes and nutrition. Want to maintain it at sludge consistency
If needing a lot of Iv’s infusions etc, and you know your a hard stick or hard to start one on, advice to you, tell the first nurse you see that your a hard stick, start and they’ll get an ultrasound tech start your iv’s. We use it on our ped’s patients often so not to cause anyone added stress. But adults are not immune of hating poke after poke after poke etc.
IV’s don’t always have to hurt. Skin lidocaine and ultrasound techs make this possible. lol
Next time they ask why you're there tell them Gwen Paltrow sent you 😅😅😅😅
Biolyte is awesome. it has kept me out of the hospital several times. I can relate to you so easily as I am experiencing a lot of the same symptoms and the same issues that you had back when you were a lot younger. I have IBD biopsy ulcerative colitis, but all doctors think crohns just can’t prove it The constant need for dilations and not being able to eat. I would also like to ask you if you have had any experience or know anything about Botox being injected in your pelvic floor anal muscles that is currently being offered to me by my colorectal surgeon. there’s just something about that that doesn’t seem right to me and I’m very skeptical. I have had four rectal surgeries the last be in January 2022. My quality of life changed after that operation not for good also caused me to have to retire. any information or advice that you have would be greatly appreciated. Prayers for you and your family.
Might only say chronic dehydration
I’ve been wanting to ask why are you not on disability? (If that’s not too personal) But would cover costs….? Just wondering. I am just filing myself for a number of autoimmune issues, back breaks, and mental health issues. I know insur can obviously be better as far as care. But just wondering
With all the drinking you do, how do you have any room for food?
ZAC SHOULD GO WITH YOU! Looks late 😕
She mentioned at the beginning of the video that it is an early morning appointment...
🌼☀️
Why do you need a biologic?
I have Crohn's disease so I take Humira to keep it in check! It's worked really well for me thank goodness!
Hello, my sweet🤗
“Have you tried drinking?” Is such a crazy question. I’m fairly sure virtually everyone would prefer drinking water/electrolytes over driving to a clinic to get stabbed with a needle.
I know, right!? You'd think a nurse would be smarter than that. 🤔😂
It’s not as easy as that. Especially when the more you drink the more dehydrated you get. You can drink away all of the electrolytes your small intestine will kick them right into the bag even if all you drink is electrolyte replacement. No large intestine/colon available when you have an ileostomy and those are the main organs that store the water while it is being absorbed by body. So it is a balancing act trying to have small intestine take up the slack.
Maggie your hand looks swollen
Your little hand is swollen
I just don't know how the majority of Americans with chronic diseases cope with having to pay so much and, it seems, having to argue with an insurer constantly. And yet, so many Americans oppose government funded/managed health care. It doesn't make any sense to me (speaking from Australia).
It has a lot to do with uneducated vulnerable demographics being fed a line of bs and being convinced to vote against their own interests. As a fellow American you want to scream in their faces about how ignorant they are but sadly they are kind of victims in their own way, as infuriating and confounding as their opinions are. The problem is it’s very hard to get through to people who aren’t ready to hear the truth. It can be a hard pill to swallow that your government doesn’t give a flying fk about you, especially when so much blind patriotism is encouraged in this country. Can I come live in your lovely country? 😂 I’m so done with this place.
The cost of healthcare in the U.S. is a topic that would require weeks of historical explanation to share. This is not the place for that topic but it is a very sad story; and quite intentional. And not just the cost but the "education" in medical schools, etc. that is currently being taught...; that's a whole other area of discussion. You may want to search the topic. Just sayin'.
Richest country in the world with the worst healthcare system.
Please drive with both hands on steering wheels.
Couldn't concentrate just watching u holding the flask.
I hv to look away n listen n look at my phone stil holding
I get lactated ringers every other week. They are a lifesaver! I found out my kidneys were shutting down due to chronic dehydration. Ended up with a port and do my own ringers.