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TPN question

Tue Aug 26, 2014 4:14 pm
"This is the best website for people with an Ostomy, hands down. So much understanding. Everyone should join."

i have had an ileostomy for a year and half now. i lost my job and insurance and have been put on medicade. i have to be on tpn 11 hours a day to keep me alive (which i do myself at home).  I have an extremely high output and medicade will no longer cover the high output supplies I need. i`m broke and alone . i`m tired of this fight . my question is if i stop my infusions how long will it take for me to die and will it be a horrible death. i really dont know what else to do and just want to know what will happen if i stop my infusion and let nature take it`s course.

thanks,

dave

Tue Aug 26, 2014 6:41 pm

dave, please check your inbox.

MeetAnOstoMate - 26,431 members
Wed Aug 27, 2014 6:01 am

Dave,   I can't help you. I didn't even know what TPN was until I just looked it up. But I just looked at your profile and you seem to love life with the pictures you took.  Plus that little girl looks like she'd miss you very much.  Hopefully MMSH has some better advice or help.  But please contact your doctor's office before you stop the treatments.  Maybe they know of a place that will give you what you need for free. Or can connect you with a pharmaceutical company that will.  I see it advertised on tv all the time if you can't afford your meds they have programs to help.    Have you tried getting SS Disability ?   Contact Binder & Binder, they got it for me within a year after trying myself for three.  I didn't have to pay them anything until I got the settlement.

There have been many days I just wanted to give up and prayed the powers that be would not let me wake up the next day.  This life can be very difficult and devastating. Can't blame you for feeling the way you do.  Sorry, not much on the pep talk thing so I will stop here.

https://www.ostogroup.org

http://www.convatec.com/ostomy/patient-assistance-program-ostomy-care

I suppose I could look up the answer to your actual question (as could you) but I don't want to know that. 

HUGSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSS

Z

Wed Aug 27, 2014 2:11 pm

Hey Dave,  I share Zywie’s sentiments and MMSH’s stuff is probably super.  Z offered a heck of a lot more than I can but, hope you don’t mind, I wanted to add 2 cents or so.  I think a lot of folks on this forum have been where you are.  Some brag about crawling out of their own abyss and some offer examples of how they did it.  I’m not about to share my own experience with this stuff because, no matter how close it might be to yours, it’s still mine and different from yours. And if mine was worse than yours that wouldn't make yours feel any better.  What I do wonder about is if I chose to leave this life and there is an afterlife, how pissed off would I be when I realized there might have been alternatives?  How more pissed would I be when I overheard folks who really cared about me expressing how much I hurt them by leaving?   I wouldn’t be able to explain my pain or excuse my choice.  It would suck, big time.  Then, If this is all there is, I might need to rethink the whole thing.  I don’t have enough smarts or energy for that so I’m going with the thoughts of not wanting anyone to be angry with me for what I did.  Sad is OK; angry is not.

Respectfully,

Mike

Wed Aug 27, 2014 7:33 pm

Hey guys,

thanks for the advice.

Zywie , i will check out those links ,  I already get dissabilitly which covers my mortgage and utlities but thats about it.  

It`s not that i am suicidal ,I have fought very hard to stay alive ,  I have to give myself about 4000 milimeters of TPN and potassium chloride infusion for about 12 hours every day ,but after a 5 month battle for my life and to get out of the hospital (which i was told, if i lived, i would never leave the hospital) I have been home taking care of my self for a year in a half now . I had a home care nursing agency that , through medicade was supplying my ostomy supplies but rececently told me they had to cut me off and medicade wont pay for the supplies i need , which are different from the "normal" ostomy supplies due to my some what special needs because of my unique medical condition. they did say they would be happy to put me in a nursing home for the rest of my life which would cost medicade many more times what it costs for just my supplies. I said thank you,  but no. i will die in my home before i rot away in a nursing home alone. The thing that gets to me is they want to put me in a nursing home , not because im sick or cant handle this on my own,  but because of a stupid plastic bag. I still have people working valiently on my behalf (God bless them) so I have not lost all hope yet but i was just wanting to know how bad a death it would be should it come to that.

dave

Wed Aug 27, 2014 8:50 pm

Well, actually, Dave, I didn't think you were suicidal, just tired of it all. It's taxing. But thanks for clearing that up.  The farthest I got was that you go hypoglycemic first thing if you stopped. I didn't want to read the rest.

I had a discussion with my sister recently. She has gone through kidney dialysis and a transplant not too many years ago.  She had polycystic kidneys. They also found an aneurysm, which we found out is a by-product of the polycystic kidneys.  She said she didn't want to have the surgery, she didn't want anyone messing with her brain. In discussing it we both agreed she had the ultimate way to die. Real quick and not knowing what hit her. Only thing she was concerned about was it happening in front of her daughter or our Mom. The next day we looked it up. There was a 99 percent chance she'd be a vegetable, or have some speech impediments, walking, balance, etc. etc., instead of just dying quickly like we both thought was going to happen if she just waited for the thing to burst. Hmmm, there was a moral to this story, but I guess my mind decided it didn't need to be revealed. 

As for Medicaid - it sucks big time.  The only state I have lived in that it is the best thing and easiest thing to get was Wisconsin.  Florida has this thing called "Share of cost"  which covers nothing unless you are admitted to the hospital and accumulate a ton of bills.  It never made sense to me why they wouldn't rather put people on straight medicaid and pay for the smaller "preventative" health care than pay thousands and thousands for catastrophe.  Insurance has never made sense. I agree, it makes no sense they'd rather pay for a nursing home for you than the bags.  But I also have to ask, since you are on disability, why don't you have Medicare ? 

Anyway, hang in there.  Cuss, stomp your feet, beat your pillows and cry if you must.  It helps me.

Z

Thu Aug 28, 2014 9:42 am

dave, well no use trying to use "logic" when dealing with any govt agency, government being the exact oppisite of "logic". the important thing is that you are willing to fight to stay at home and retain your dignity...something we can all admire. please check your inbox, i think i can help with a few supplies. its important to remember when posting on this site that many people who never comment read these post and  may be in a simular condition, who knows you may inspire others to fight on and not give up. regards. MMSH

Thu Aug 28, 2014 3:49 pm

zywie,

"tired of it all" thats is a good way to put it. that is what i am but i will keep on fighting. 

I`m sorry to hear all your sister is going through. I truely hope for a miracle for her.

medicaid is a nightmare. I guess it differs from state to state but here in NC, because I am only 46 I have to be on medicaid for 2 years before i will be eligable for medicare. I have about 10 months to go because medicaid would not take me untill about my 4th month in the hospital and I had racked up over 8 million $ in bills from multiple surgeries.

the local city paper here is wanting to do an editorial piece on me. I don`t know if it will help me but maybe it will bring some attention to this medicaid abomonation and help some one else.

mild_mannered_super_hero

you are right and hopefully I will inspire others to keep on fighting. Thanks again and I will contact you about those supplies.

Thu Aug 28, 2014 4:13 pm

I think the story will be great!  If just one politician sees it, maybe it will open his/her eyes and make ALL (not just one party or another) of goverment realize healthcare is a real issue in this Country. The insurance companies have gotten away with way too much for way too long. And the majority of the states (especially past the mason/dixon line) don't want to help any more than they have to. If nothing else, hopefully it will open more doors for you to get more help with your needs. 

I was put on Medicare as soon as my claim was approved. But then again, I was already past 55 by the time they approved me.  I do think I remember my husband having to wait 2 years when he was 38.  I agree with MMSH about the goverment.

As for my sister, thanks, but she's doing great. We have until the beginning of next year (unless something else happens) before she will have the surgery.  I guess I was just trying to say, we need to do whatever we can to live some sort of contented life - because just letting nature take it's course can be worse. 

I'll watch for you in the funny papers !  

Z

Fri Aug 29, 2014 5:45 pm

Hey Dave, I just wanted to thank you for sharing your stuff and giving us reason to think a little more.  In the first few sentences of your original post you mention things the majority of folks have never experienced and most can't even identify.   You've certainly been through it and you're fighting to make it as good as it can be.  The newspaper article might alert some person or two who might be able to jump in and give you a hand.  Good luck and keep us posted, please.

Mike

Sat Aug 30, 2014 4:06 pm

thanks mike, 

if anything good comes out of it i will post an update.

Mon Sep 01, 2014 10:26 am
Hi Dave, I read your post and am frustrated for you. You should be receiving the medical supplies you need - no question....it is not like we wanted this medical condition. I really like the idea of the newspaper article. Getting the word out is always so helpful for those people who do not know what goes on in healthcare. It may help with your supplies too. Here in PA, I recommend to my ostomate friends to walk in to any hospital if they need short term supplies and ask for them. The ER should have something on hand and they will not turn you away. Everyone should be receiving the care that they need. I have a few friends who have high output like you and they take medicine for it. I don't know what the name of it is but it works for them. If medicaide isn't helping, maybe once again, the ER would/could? I was on TPN last year due to my UC. Regarding the TPN, I don't know what happens if you stop. I took the treatment every nite for energy. It was pretty much all the nutrition I received prior to surgery. Is your TPN permanent or temporary? My husband and I always say it is too early for a headstone but we both understand your level of frustration - we would be frustrated too. Keep posting - others here will have new suggestions regarding the Healthcare/medical supply challenge. Take care and please keep us updated. We are here and care. LH
Tue Sep 02, 2014 3:22 pm

ladyhope.

Thanks for the tips. I didn`t think of an ER for that but I will definately keep that in mind. As of now my community care social worker has managed to get enough in donations to get me a months worth of supplies and is currently working very hard to get medicaid to grant me an exception. Also trying to get a lawyer involved with this as well.

 As far as the TPN goes, unfortunately, that is for the rest of my life, that plus equal amounts of potassium chloride. I have a permanant port sugically implanted in my chest (which has already had to be replaced once) ,and once a week i go to an infusion center where they draw labs and stick a new needle in my chest (took some getting used to but still is not pleasent). At one point in the middle of all this  I escaped from a nursing home they stuck me in and did not have the TPN or PC , but within 3 days I was barely concious and put back in the hospital.  But it`s something I have learned to live with and is now part of my daily routine. Thankfully , I am not currently having the same issues with getting those supplies that I am having with the ostomy supplies. 

As far as my high output goes ,They had me on every drug imaginable including Opium , which I started to get addicted to and 3 very painful shots of some drug directly into my stomache every day for about 2 months . All to no avail.  The only way I have found to keep it down to a workable level is to starve my self , which unfortunately make me very nauseous, but allows me enough time to get out to run a few errands and such or get some much needed sunshine and fresh air but even then my bag fills up in about 30 -45 minutes. So I basically eat once a day in the evening when I just cant stand the hunger anymore but after that I fill a bag every 10-15 minutes for several hours untill it starts to slow down a little then the cycle continues. 

Thanks for the caring response, it`s nice to see the people on here who have responded so kindly.I only hope that all I have been through and am still going through can somehow be of help to others.

Take care,

Dave

Sun Sep 07, 2014 2:16 pm

Hi Dave,  Thanks so much for the post response.  You have really been through alot medically.  I am glad that you were able to acquire the ostomy supplies that you needed. One step forward:)  Getting a lawyer involved sounds great because a healthcare attorney would know the law in that particular State.  I just can't figure out why there are so many hurdles for many people when it comes to getting medical help.  Ten years ago, I worked in the long term care industry and saw first hand the endless paperwork that my residents needed to complete in order to have a place to live, medical and personal care.  I would help the families complete the booklet application.  The process is long and confusing at times.  I would think that the medical system would want to give people the supplies that they need in order to keep them from living in a long term care facility.  Those communities are so expensive not including medicine, equipment, therapy, etc.  What happened to keeping people independent for as long as possible?  I apologize for rambling on.  I am sorry to hear about your pouch filling so quickly and no medicine will slow it down.  My friend has short bowel syndrome and has similar challenges.  She also has serious issues with dehydration and drinks water all day long with contributes to the ongoing filling pouch.  She, like you, just works around it and continues on.  Take care Dave and have a nice week.  Keep posting as there are other people on this site who may have some additional suggestions not yet mentioned.  LH

Sun Sep 07, 2014 9:42 pm

Hey Ladyhope.

Thanks to the community care manger working with me plus the kindness of mild_mannered_super_hero  and his wife (above ) I have enough supplies for about a month and a half. That has given me some breathing room but this battle will continue for the duration of my life unless medicaid will grant me an acception which hopefully a lawyer will be able to help with. Having to deal with this adds a lot of pressure and frustration to an already difficult exisitance  and you are right, you would think for cost effectiveness alone they would want to keep as many people at home and out nursing facilities as possible but that would make too much sence . I cant help but think someone is making money off of the suffering of others.

I can definately sympathize with your friend. It`s amazing what, given enough time, one can learn to adapt and live with. I often experience an "un-quenchable" thirst and drink more than 2 gallons of fluids a day, on top of the 12 hours I infuse fluids and TPN.  I often find myself thinking I could drink a river dry. Thank God I have well water, I could not imagine what my water bill would be. During part of my 5 month hospital stretch I was what I think they called NPO`d for almost 2 months, no food or water by mouth , only infusion. I experienced  a thirst and hunger I could never have imagined and I would not wish on my worst enemy. during that time I lost half my body weight. then for a month all I was allowed was ice chips. I think I ate enough chips to make up a small iceburg during that time and I felt like it was the best thing I ever had in my life. Tell your friend she`s not alone and take care.

Dave

Mon Sep 08, 2014 8:54 pm

Hi Dave,  Thanks for the post.  I am so glad to hear that you have over a month of supplies now.  That is great. I was thinking about what you said regarding the NPO, then the ice chips and thirst.  When I was really sick with UC, although I could eat, I avoided it as much as possible because I would be in so much pain once the food passed through my GI track.  I was taking pain meds like they were candy.  The docs would say to me, we don't want you to become addicted.  I would respond, I will worry about the possible addition, please get rid of the pain.  It was a terrible and sad time in my life.  Some would say to me what doesn't kill you makes you stronger.  Did I need to be that strong...the answer was yes.  All of us are strong because we fought to survive.  Anyway,  I will certainly share your thoughts with my friend.  She is not on this website.  Speaking of webpages, this website is a beautiful gift to us because we all have each other to reach out, share our thoughts and chat.  I am grateful for the communications and the connections.  Take care Dave and have a nice week.  LH

Tue Sep 16, 2014 11:38 pm

I was on TPN for 2 years when a Fistula had ruptured through my abdomen. After a long hospital stay they taught me to do the infusions at home as well. I took nothing by mouth except water/ice chips and sucked on the occasional lifesaver for flavor. Maybe they need to increase your calories through the TPN because I felt satiated from my infusions and/or increase the infusion time from 12 to possibly 18 hrs. I know that when I first started TPN my infusions were 18hrs and by the time I was infusing at home I was down to 12 hrs and carried my TPN around in a special backpack made for the infusions which allowed me the freedom to go out. I found that my ileostomy output decreased substantially by just getting my nutrition through the TPN. 

Tue Sep 16, 2014 11:40 pm

Hello Dave,

First off, thanks for sharing your situation.  My apologies if someone else commented this, I quickly skimmed the other responses so I could've missed it.  But, have you tried attacking this issue at the other end - the high-output end?  You said that the issue was that Medicaid would not pay for the special supplies that your required because of your high output, so it sounds like it might be okay if you could do something about the high output such that you could get by with the normal supplies.  Have you discussed with any doctors what you might be able to do to reduce the output?  I'm guessing you probably have, but just in case, have you tried any dietary alterations, such as keep a notebook of everything you eat and all of the details about what followed, digestive-wise?  I know there are certain foods that if I eat then I can significantly vary the quality and in some cases the quantity of output.  Certainly eating less, if you could manage it, would seem like it would have a direct one-for-one impact on how much you output.  Also, what are the specific ostomy supplies that you require due to the high output - is it a certain type of bag, or wafer, or seal, etc. ?  Perhaps there are some less expensive alternative solutions that someone with some imagination here might be able to help come up with.

Best wishes,
George

Wed Sep 17, 2014 4:20 pm

 Hi krisrox,

I have the same backpack, but have not been brave enough to venture out with it at night when I am infusing.  I asked the docs if I could stop eating alltogether (would be nice to save the money on food) but they said not to and also I experience extreme nausa when I dont eat.  I can only eat one meal a day, at night, if I want to be able to leave the house during the day. So I starve myself all day with the help of some perscription anti nausea meds so I can get out for a little while during the day. Even while starving my self I can only go 30-45 minutes without having to empty this bag. They have lowered my tpn to every other day because I have put on a little to much weight but still have to infuse potasium chloride dayly to keep from dehydrating. Do you still have to infuse every day ? I was told I would for the rest of my life since they have removed all my large and most of my small intestines. It makes things very difficult, even if I eat a cracker , my bag will fill up 4-5 times in an hour. 

Hi smith311, 

Yes, They have tried every medication they had on me during my hospital stay , like I mentioned somewhere above even opium and some kind of injections directly into my stomache 3 times a day ( very unpleasant) and special diets as well . nothing had any effect at all except not eating at all which is why I am down to one meal a day, which is hard because I deal with extreme nausa when I dont eat.  The bag I have to wear is rather large with a rubber spout on the end for draining. The biggest problem with medicaid is with the overnight drainge bag i need to sleep, as my bag continues to fill as I sleep and infusing.  while in the hospital the only thing the ostomy nurses could come up with to get me through the night was to use a urinary drainge bag that fits into the rubber tip of the ostomy bag. not an ideal situation but it worked and was the only thing anyone could come up with. these bags have a small drain at the bottom to be emptied and reused but because my output is mostly liquid but not all liquid, the drain at the bottom clogs up and cant be emptied. because of this I need one a day which I fill up over night, about 2000 mililiters. Medicaid only allows me about half of the other supplies I need plus 2 of these bags a month (about 5$) . Unfortunately I need one a day and as of yet not one of the people who have been working on this with me has been able to come up with an alternative solution. I am always open to new suggestions though.

Wed Sep 17, 2014 4:45 pm

I have to take potassium every day as well. I also go for weekly iron infusions at the hospital as an out patient. I've also had all of my large intestine removed. Down to 7 feet of small intestine left.  I did intravenous gravol with the TPN and was advised nothing by mouth. I could tolerate the nausea more than the pain of the blockages and stool leaking through my abdomen... so for me just having the TPN was a blessing. 

Sun Sep 28, 2014 6:04 pm

Dave - sorry I missed your comment earlier where you discussed some of the things you have done to try to mitigate the high output.  Regarding your response to my message, I also get quite nauseous when I starve myself, so I know what you mean there.  Then it's tough to eat to get back out of the nausea, takes a day or two to fully recover.  I really wish I could provide some type of enlightenment or new advice but it does sound like you have explored a lot of the options out there.  I noticed you mentioned about getting a lawyer involved and that sounds like a good move.  It just pisses me off (pardon the language) that the insurance companies cannot see fit to at least meet you even halfway, providing you a drainage bag for every other day, even though that's not enough at least it's *much* better than two per month.  I'm sure you've probably already tried or thought about this but I don't suppose you could flush out the bag's drain with water after it gets clogged?  Do you have a make/model number of this bag so that I might go look it up to get a better idea of what you're dealing with?

Best wishes

Mon Sep 29, 2014 12:21 pm

Smith311,

yeah , I have run out of ideas. the bag is a Bard urinary drainage bag #154003.If you look on google images you can see a picture of it. The problem is this is a urinary drainage bag and not designed for what it`s being used for but it was all the hospital staff could come up with to deal with my high output. The nurses would try to empty it but the small drainage spout at the bottom would almost immediately clog . They would then try to work it out by bending it and massaging it but at that point most of the time it would start to leak and end up all over the floor in a nasty mess. When i was in the hospital and had started eating 3 meals a day again I filled one of these bags (2000 mils) every couple of hours. now at home I keep that down by starving myself all day , then when I eat a meal for supper I spend the next 3 or more hours going back and fourth to the bathroom every 10 to 15 minutes to empty the high output pouch on my stomache (at least I`m getting some exercise) . when it finally starts to let up some I hook up to the bard bag and go to bed. When I get up in the morning it`s just about full. I disconnect it and start the cycle all over again.  My output is so high that after I do eat I actually have to kneel on the floor bent over a chair for the 3 + hours so that i drain directly into the pouch, if I try to sit in a chair the high output is more than the wafer on my stomache can hold up to and starts to leak around my stoma and then it causes unbearable stinging and burning. It took a while to figure out the kneeling down thing and it is uncomfortable but it works . If I didnt do that I would not be able to get a wafer to stay on for even one day . By doing it this way I can get a wafer to stay on for 2-3 days before I have to replace it. there are cheaper bags but this is the only one we have been able to find that has an irrigation port near the top where I can scew on a syringe and inject water into where the hose fits into the pouch which sometimes gets clogged up .The whole situation can be quite maddening and it gets to me sometimes but by the grace of God I find the strenght to endure and keep going.

Tue Nov 18, 2014 5:33 pm

here in the  uk we get health care free good job we do. If  lived in usa my health bill would over $50000 by now counting how many times i have admitted to hospital with bladder problems. About 9 times in the past 5 years.

Thu Sep 24, 2015 11:07 pm

I also had a bad reaction to Remicade and started on Humira. Was on IV Iron infusions also until March 2015 when I had an Ileostomy. Have 2 more surgeries at St. Pauls for a reversal. My next one is hopefully in December.

Thu Feb 22, 2018 4:08 am
wow, EVERY single thing thing you said is EXACTLY what happened to me! you were diagnosed in 2007, I was diagnosed in 2007. you tried all those meds, and had a bad reaction to remecade, I tried all those meds and had a bad reaction to remecade. You got an ileostomy in 2015 and have 2 more to go, I had an ileostomy in 2015 with 2 surgeries to go. You go to St. Pauls, I go to St. Pauls. I feel like I'm in the twilight zone buddy... crazy!!
Tue Jul 03, 2018 3:19 am
Daven68,with TPN you need to be tapered off it is very dangerous to just disconnect.Please don't give up there are programs out there to help you.Call the local hospitals & ask.
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