Feeding Tube

• By Mags1
• Posted December 8, 2007 at 7:24 pm

I am sorry that you are feeling so nervous about the feeding tube and the best person to give you any input would be Char as she has been dealing with feeding tubes for a long period of time, but just think about this, I don't have the option of a feeding tube they want to remove my stomach as the doctors say that there is nothing more that they can do for me. My discussion is under yours in INABLITY TO EAT. This is a terrible illness as you well know Michelle and I sincerely hope that there will be a cure in the near future that all of you younger folks can take advantage of. Hang in there kiddo, I hope that you start to feel better soon. All the best to you. Mags

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• By NancyL
• Posted December 9, 2007 at 4:55 am

Hi Michelle,

I just want to offer you tons of support. These problems are so very tough and I am sorry you are having to have yet another medical proceedure. My advice is to try to control your anxiety by deep breathing techniques and possibly yoga. It is normal and natural to be afraid of something like this. I hope that the anticipation is worse then the actual proceedure and that all goes well. Good luck to you from the bottom of my heart.

Mags,

Good luck to you as well and trust your instincts! It doesn't sound like an easy proceedure to have your stomach removed even if you were young and your age concerns me. Has the doc done this before? And did you get a second opinion that agreed? Is the problem your esophagus or your stomach? If it is your esophagus, how does removing your stomach help? I had really drastic surgery a year ago and the recovery was hell, but I just started to feel better now. I am 48. Although I still can't eat.
I hope you both have a strong support system. Best of luck to both of you and everyone here.

I am starting to feel better (not every day, but more often) then I ever thought I ever would again. Just avoiding solid food and sticking to a limited number of liquid items. I know that won't work for everyone. I want to offer hope that it can happen for you as well. I am a strong believer in positive thinking and it costs the same (free) as thinking that things won't get better. And I believe staying positive is just vitial for all of us. Concentrate on what is going well in your life, no matter how small or large that thing is.

I am always telling myself- I can walk, talk, see and hear, clothes to wear, a roof over my head and someone (that can be anyone, a friend, or family member) that loves me. So I am truely fortunate indeed. I used to have "enough food to eat" in that mantra until a couple of years ago! :)
Hang in there everyone!
-Nancy

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• By Char
• Posted December 9, 2007 at 2:44 pm

Michelle,

I'm so sorry the botox isn't helping. I know you were hoping it would help, atleast long enough for your surgeon to be able to put in the pacer. I've had a tube for 6 years now. They can be removed if you no longer need it. It is also a great way to take meds. I haven't taken any meds. by mouth in a long time. I have a hard time tolerating volumes, especially if it's meds or a flush, since that goes in all at once instead of over a longer period of time on a pump. So, if a med is over 10cc's in liquid form and it comes in a pill I can crush or a capsule I can open I do that. Being limited on the volume I can tolerate at one time I run my feeds over 21 hours a day. You can also run water to help with hydration. There are several advantages with a tube, but I have to admit if one of my doctors saw that I said that he wouldn't believe it was me. I do get irritated with my tube from time to time, but it is so helpful. Just having regular nutriton will help you feel better. You can't really realize how much it can help until you get nutrition after being without. Hope that made sense.

As for making the decision. That still gets brought up from time to time. I was 16 when I got my first tube, so the decision wasn't really up to me. Now that I sign my own consent forms they will say that now it is my decision, mostly because I'll remind them that I didn't have any say so when I got the first one. My reply now is that it still isn't my decision, because without it I wouldn't be able to survive.

Don't worry about being scared. It's a big decision, no matter what you decide. It can take the pacer several months before you notice improvement, so if you have a tube and are already doing tube feeds it might be able to help you even after you have your pacer put in. Then, hopefully you will improve with the pacer and have your tube removed. It's also hard to go from something like your IV meds, that are your safety net, to something else. I know the feeling, I've been there. A tube is a lot less likly to get infected then a PICC.

I'm sure it's hard trying to get in enough of the liquid nutrition. If you go with the tube have they talked about what kind they would do? You may want to ask about a GJ-tube. This will allow the nutrition to bypass your stomach and you can vent your stomach through the G part. A g-tube can decrease the amount you throw-up and also help with reflux if that is a problem for you.

I hope this has helped. I'll be happy to answer any questions you have. Let me know how you continue to do.
Char

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• By michdey
• Posted December 9, 2007 at 5:15 pm

Thanks to everyone for their supportive comments to my posting. I know I have to have the tube put in, it is just the act of putting it in that is freaking me out. I will most likely have it done after the holidays. That will give the latest botox injection the most possible time to work if it is going to but either way, I am still going to have the tube put in. Yes, Char, they have mentioned putting in the G-tube, bypassing the stomach since that is my biggest problem area. It is important for me to be able to start taking my pills especially for my blood pressure which has been out of control lately and is causing concern about kidney damage. I know I will probably have to have my pills crushed but at least they will get in me or at least that is the hope. I spoke to my insurance case manager and everyone is in agreement that the feeding tube placement is the next step and then the gastric pacer surgery in the Spring. Thanks again for all the encouragement--I'll keep everyone in the loop.

Michelle

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• By Char
• Posted December 11, 2007 at 11:56 am

Michelle,

I hope you are hanging in there. I know it's a hard decision to make. I hate it when there is something I know I need to do, or have done, but I don't want to do it. It's hard to say you'll try something new, when you've tried so many things in the past that haven't been helpful. You will be sore some at first, and it will be something completly new to get use to and deal with, but I think the nutrition will help you in the long run. You are so strong with all you are dealing with. I hope you know I admire you.

I have a question about the botox. How soon do you usually see an improvement, if you are going to? I'm going to be having it done soon, once we get the insurance stuff taken care of, and I was just kind of wondering what to expect and how soon after I have it done can I hope to start seeing a difference?

Hope you are having a good week,
Char

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• By michdey
• Posted December 12, 2007 at 5:10 pm

Char,


In my experience, when the botox worked the firstt ime, it took about one week for me to see a difference. The first thing I noticed was a big decrease in the amount of nauseau I was experiencing and then I was able to eat and digest more foods than I had been able to previously. The doctors had told me it could take 1-2 weeks for me to notice a difference but as I said it was about one week and then things continued to improve from there and things stayed good for about four months that time. Unfortunately, it does not appear that the botox has worked for me again this time which the doctors are not surprised about. They say that if it is going to work once, it will probably work twice, but if it does not work a second time, it is only a 10% chance it will work a third time, but I had nothing to lose to try it again. Unfortunately, I have gained some awful stomach cramps that I never had before so I am not happy about that. I wish you the best of luck with your botox experience!

Michelle

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• By Char
• Posted December 15, 2007 at 11:00 am

Michelle,

Hopefully your stomach cramps are better. I wish the botox would have worked for you, at least long enough to get you till when you can get your pacer.

I found out on Thursday that insurance has denied it. They said because it is "investigational" they won't cover it. If an insurance won't cover something "investigational" then it won't be used long enough to get out of the investigational stage. I'm so irritated right now. We are going to appeal, but with all the holidays coming up I'm sure the appeals process will take a little longer then normal. I'm just so frustrated right now with everything. It's just one of those times when it's one thing after another and you feel like each time something happen the hole you're standing in gets a little deeper and you aren't quit sure how you're suppose to dig your self out of it. I just feel so stuck right now. I don't want to do any of this anymore, not like I "wanted" to do it to begin with, but lately it just feels like to much to deal with.
Okay, I'm going to stop complaining now.
Have a good weekend,
Char

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• By Charlotte1
• Posted December 15, 2007 at 12:35 pm

Char,

I am so sorry about the denial. I am fed up with insurance companies deciding the appropriate treatment for our lives, it is a quality of life issue.

My insurance would not pay for the Zofran anymore and due to the vomiting that would not stop I ended up in the hosptal for 11 days to the tune of $20K. They did not want to pay the $165 for the generic medicine. Go figure.

Good luck with the appeal.

Charlotte

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• By Char
• Posted December 15, 2007 at 3:31 pm

Charlotte,

I hate that they wouldn't pay for your Zofran. Every so often my doctors have to write new letters and make some phone calls to get mine approved again. You would think the insurance companies would realize that they would probably save money if they would approve the meds. and/or treatments recomended by the doctors. When we did my appeal for my pacer we had all the numbers like how much they have to pay for my meds, TPN, and spending at least 2 weeks a month in the hospital, and then how much it would cost to put in the pacer and how hopefully after that the other expences would start to decrease. Thankfully, the pacer does help and my meds. now go in my tube(tube meds. are so much less then IV), I'm on a little less zofran, am on tube feeds instead of TPN, and I'm not in the hospital as much. Things aren't great though, and the last 6 or so months have been a little rougher then the last couple of years. Now, my doctors want to try and do something that will help improve my quality of life a little more, but can't because of insurance.

We had to spend 2006 with a different insurance company and that was a really long year. We were so glad when we got to go back to the insurance company we had before. During 2006 I spent several months with a NJ-tube and this other insurance company didn't want to pay for the tape to hold it on my face. That was stupid. I had been in the hospital for a month and within a week of being out the insurance says they don't want to pay for the tape. Well, tape is such a simple stupid thing to not want to pay for. My doctors had to do the whole letter and phone call thing for TAPE. They finally said they would pay for it, but I just think that is so stupid.

Okay, I'm so sorry. I didn't mean to go on like that. Insurance is just such a huge frustation for me. It's not just that they won't approve my botox and stuff. I frustates me that there are so many people who need things like the pacer and can't get insurance approval for them. If I could change something in this world, first it would be to get rid of Gastroparesis, but after that it would be that people could get the care they need without having to worry about insurance not covering it.

Hope you are having a good day,
Char

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• By Charlotte1
• Posted December 15, 2007 at 8:31 pm

Char,

Since you live in Tennessee could you get on Tenncare to help with the things your primary insurance does not want to pay.

Lived in Chattanooga for about 40 yrs and worked in durable medical equipment and Tenncare was something that people with a lot of medical bills could get at times to help with the cost. It might be worth a phone call.

I really hope you can get the botox to help you.

Charlotte

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• By JenD
• Posted December 17, 2007 at 4:55 am

Hi Michelle,

I just wanted to say good luck with getting your tube. I don't want to scare you but I had severe complications with my surgery for g-tube and j-tube placement. in October. They had to do an open procedure because of my anatomy and the surgeon kicked my spleen and didn't sew my g-tube area up correctly so I got peritonitis. Just make sure that you have talked to your surgeon in depth and that you like him/her and are comfortable with everything. For me we rushed into it and I paid the price. It sounds like you have a good doc and you should be fine...complications are rare with these surgeries and the tubes can really be a lifesaver for a lot of us with GP.

I am doing tons better now...I was in and out of the hospital for the last month or so but now I am home on TPN and doing better. Unfortunately I have not been able to tolerate the j-tube feedings very well without bloating and nausea and vomiting. I am going to try a new forumla to see if that might help.

I wish you all the best. Know that you are not alone.

-Jen
http://neuronswithdystonia.blogspot.com

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• By Charlotte1
• Posted December 17, 2007 at 5:52 am

Jen,

I hate that you have had such a difficult time. I do not have feeding tube, but have been on TPN in the past, without having GP.

Now I have GP and having great difficulty eating. Do you have a G tube for venting? I am considering having one placed to help with the vomiting.

I will keep you in my prayers.

Charlotte

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• By JenD
• Posted December 17, 2007 at 12:48 pm

Thanks so much Charlotte. It has been a rough road. Yes, I do have a g-tube and it basically eliminates the need for vomiting. I must say that the G-tube has been pretty painful for me and I have had a lot of granular tissue that hurts. When I was in the hospital they put suction on it to decompress my stomach and it really helped me feel better. Since I have started on domperidone I haven't had to use the g-tube much. I flush it every few days just to make sure it stays open.

Thanks for writing and I will pray for you too.

Take care,
Jen

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• By Char
• Posted December 23, 2007 at 2:52 pm

Charlotte,

I don't think I qualify for Tenncare. I'm on my parents insurance. I don't think they pay for pacers at all, so I would then be out of luck next time my battery dies. Thankfully, aside from when I got my 1st pacer and now with the botox we haven't had to much trouble. My doctors have to do letters every so often for some meds. and sometimes make a few calls, but this is only the 2nd time we had had to appeal anything. Thanks for the thoughts and ideas though.

I got a few calls last week from some people in the GI clinic and they were working on the appeal, then Friday I got a call that everything had been sent in but it could be up to 30 days before we had an answer. I have a feeling that with the holidays it will take the 30 days. I was less effected by finding out it could be 30 days before we have an answer then I was when I first found out it was denied. I think because I had already come to terms with the fact that it wasn't going to be happening very soon.

Hope you have a Merry Christmas,
Char

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• By michdey
• Posted January 4, 2008 at 3:59 pm

Hi Everyone--


I just got home from the hospital yesterday after three weeks there. I ended up with the MRSA virus in my bloodstream from my picc line which then became antibiotic resistant. I ended up in ICU for several days and had to have blood transfusions. I had my picc line removed and had a G-J tube placed. I can't begin feedings through it for three more weeks until it completely heals but then I'll start TPN. I am still very sore from where the tube is going in (surgery was one week ago) but other than that I am doing okay. I have been approved for the gastric pacer surgery in the Spring so hopefully the tube will be temporary. Hope everyone had a nice holiday season and have been healthy.

Michelle

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• By Charlotte1
• Posted January 4, 2008 at 9:32 pm

Michelle,

I am glad you are home. MRSA is a nasty infection. I am glad that they were able to get it under control. How is the J-G tube working? are you able to vent?

Is your pain getting better?

Will keep you in my prayers.

Charlotte

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• By Novagrad
• Posted January 5, 2008 at 8:08 pm

Hi Michelle:

I had a feeding tube placed in April in my jejunum. It was traumatic as it is a huge lifestyle change. But you know what? You get used to it. My first one got infected so it eventually came out and in November I had a new one placed (a "button"). I'm on nighttime feeds and just switched my pump to a portable one. Please make sure you get a portable pump so you don't have to deal with an IV pole and a large pump that take up a lot of space. This pump and tube feeding bag (Zevex Infinity) fit in a backpack - it's great! I never get hungry so not having food is not such a big deal. I can take in some liquids and some pureed-like foods, but nothing with corn products since I'm allergic to corn products (they are in everything). But I've learned to think of other things and I've taken up a whole bunch of new hobbies this past year that divert my attention (horticulture, crocheting, scrapbooking). It's a big decision but you don't want to get sicker. I spent 5 months (not straight) in the hospital in 2007 due to severe malnutrition, septic shock, etc. I lost a lot of weight and am still only 84lbs (I'm 5'3"). But I look at the tube as a lifesaver and I think you should too. You'll get used to it. There are worse things to deal with than a feeding tube so I hope you can look at it like that. Best wishes with your decision!

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• By JenD
• Posted January 6, 2008 at 9:52 am

Hi Michelle,

I'm so glad to hear that you are home and healing. I hope you are feeling better and can start the tube feedings soon. I am on home TPN because I have had trouble with using the j-tube. I am still trying to do tube feeding because it is a better option than TPN. I hope you heal quickly and that the pain goes away.

Hang in there and know that you are not alone.
Take care,
Jen
http://neuronswithdystonia.blogspot.com

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• By Novagrad
• Posted January 6, 2008 at 10:20 am

Sorry Michelle - I never read far enough down to see that you had the feeding tube placed. I too just got out of the hospital - I was there for 9 weeks. I had septic shock from my PICC line and TPN and had septic emboli spread to my lungs and eyes. I was in the ICU for a couple of weeks and in bed for 6 weeks and then could not walk. Finally I went to rehab for almost a month. During the stay I got my new j-tube via an open procedure. Both j-tubes I've had (first one via laparascopic procedure but that one ended up infected) were very painful for several weeks, but eventually you won't really feel it anymore. Did they use the "button" for your tube? It sure seems that we malnutritioned people take an awfully long time to recover and heal. I also have autonomic neuropathy which puts me at a very high surgical risk and I never tolerate surgery well. I would be very interested in the gastric pacemaker but none of my doctors have mentioned it. We'll see what happens. Take it easy and get plenty of rest. Things will turn out OK and the pain will begin to subside soon! :)
Mary Ellen

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• By michdey
• Posted January 7, 2008 at 9:20 am

Hey Everyone--


I thought I'd write everyone at once. I am starting to feel better. I am able to "vent" my tube and feel better. I am not able to tube feed yet. I was told to wait for four weeks ( from surgery) to begin tube feeds (which will be another three weeks or so). I go to the surgeon on Feb 7th to make sure I am healed enough to safely begin the tube feeds. I am not sure whether I will begin the tube or IV feeds at that time but either way will expect to find out then. Until then, I am continuing on Ensure/Boost, and a full liquid diet as tolerated as I had been before. I still experience daily nausea but it does not seem to be as bad as before I went in the hospital. I go to my primary doctor on Thursday so I'll get my official weight but I believe I lost about 15 more pounds in the three weeks I was in the hospital last month. The pain seems to be lessening but I do still have it at times. I am trying to get through each day without feeling too bad for myself and trying to keep reminding myself that March is right around the corner and I have been approved for the gastric pacer surgery and it will take place this Spring and it will be successful!! I need to stay positive at this point and believe that everything is going to work out!! It is a beautiful day here in New York State--on its way to 55 degrees and unusually warm weather!! I hope everyone can find something to smile about today and find the warmth of hope for the future! Take care and thanks for all the warm wishes you have sent my way!!

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