Guest guest Posted September 10, 2005 Report Share Posted September 10, 2005 Good Luck and God Bless......Dolores Ann-Marie Mc peetie@...> wrote: Well, the day is finally here. My J tube surgery is scheduled for Sept.14th. Dr. Korson is on rounds the week and weekend that I am going to be there. He will be following me very closely. I have an Adult GI Specialist that I met with in March and he will be working with Dr. Korson as far as my feeds go. He is not experienced with Mito, but told Dr. Korson that he is interested in learning and will work with him as a team. All the GI specialist at NEMC are Peds GI, so Dr. Korson thought it would be a good idea to find an Adult GI to work with him when he has Adult Mito patients that need GI Doctors. So I am actually the GI docs Guinea Pig. Keep your fingers crossed that everything goes well. My husband Kim and I are flying (Angel Flight) to Boston this Sunday. I will be admitted to NEMC on Tuesday the 13th and then the surgery on the 14th. Since we will be there a day early we thought we would visit a few places if I am physically up to it. I really want to go and visit " Cheers " which isn't far from the hospital. I think it would be neat to go there and sit on the bar stools!!! And maybe we will go out for dinner and a movie. Look for updates at my caringbridge website. If you are interested my web page is: www.caringbridge.org/pa/annmarie I am so nervous about this surgery. I have thought about canceling it a few times. Dr. Korson had me go on TPN so that I could gain some weight before the surgery and with the added weight gain we are hoping that I will recover from the surgery faster. I guess what I fear the most is the possibility of being on TPN and J feeds for the rest of my life. It is a true reality check. Knowing that I will now be connected to tubes and lines in order to survive, is a scary thing. If you pray please keep me in your prayers. If you don't please keep me in your thoughts. Hugs, Ann-Marie ---------- No virus found in this outgoing message. Checked by AVG Anti-Virus. Version: 7.0.344 / Virus Database: 267.10.20/95 - Release Date: 9/9/2005 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2005 Report Share Posted September 10, 2005 Ann-Marie, Sending prayers and hugs and reassurance. The whole tube routine was scary for me too at first, but now is just part of the daily schedule and no big deal. It took a while to get to this point, but I'm sure you will too. As I understand it there are two ways to place a J-tube, one being much less invasive than the other. This is what I was told. My GI doc did not want to use the more common, less invasive method (for various reasons) so I had a longer recovery. But even then I DID recover with time. We were very hopeful that the feedings would help stabilize my disease, and with time that did happen. Knowing what I know now from this end, I would certainly make the same decision and with a lot less fear. You are in good hands with Dr. Korson! Take care, Barbara > My J tube Surgery > > > Well, the day is finally here. My J tube surgery is scheduled for > Sept.14th. Dr. Korson is on rounds the week and weekend that I am > going to be there. He will be following me very closely. I have an > Adult GI Specialist that I met with in March and he will be working > with Dr. Korson as far as my feeds go. He is not experienced with > Mito, but told Dr. Korson that he is interested in learning and will > work with him as a team. All the GI specialist at NEMC are Peds GI, > so Dr. Korson thought it would be a good idea to find an Adult GI to > work with him when he has Adult Mito patients that need GI Doctors. > So I am actually the GI docs Guinea Pig. Keep your fingers crossed > that everything goes well. > > My husband Kim and I are flying (Angel Flight) to Boston this Sunday. > I will be admitted to NEMC on Tuesday the 13th and then the surgery > on the 14th. Since we will be there a day early we thought we would > visit a few places if I am physically up to it. I really want to go > and visit " Cheers " which isn't far from the hospital. I think it > would be neat to go there and sit on the bar stools!!! And maybe we > will go out for dinner and a movie. > > Look for updates at my caringbridge website. If you are interested my > web page is: > > www.caringbridge.org/pa/annmarie > > I am so nervous about this surgery. I have thought about canceling it > a few times. Dr. Korson had me go on TPN so that I could gain some > weight before the surgery and with the added weight gain we are > hoping that I will recover from the surgery faster. I guess what I > fear the most is the possibility of being on TPN and J feeds for the > rest of my life. It is a true reality check. Knowing that I will now > be connected to tubes and lines in order to survive, is a scary thing. > > If you pray please keep me in your prayers. If you don't please keep > me in your thoughts. > > Hugs, > Ann-Marie > > ---------- > > > > No virus found in this outgoing message. > Checked by AVG Anti-Virus. > Version: 7.0.344 / Virus Database: 267.10.20/95 - Release Date: 9/9/2005 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2005 Report Share Posted September 10, 2005 Ann-Marie I'll be thinking of you as you head into this surgery. It is good that you have the beginning of a team to work with you. Think about the fun things you can do when you get there and not about the surgery-at least try. Hugs, laurie > > Well, the day is finally here. My J tube surgery is scheduled for > > Sept.14th. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2005 Report Share Posted September 10, 2005 -dear Anne Marie, just wanted to wish you luck with your j tube procedure. i know that must be a big step for you (I know it would be for me). As far as staying on it and TPN the advice from the experts is to try and keep eating, and keep taking the prokinetic drugs (ex. domperidone , zelnorm) hsvbe you investigated the gastric pacemaker? Good luck in everything, Celia-- In , Ann-Marie Mc wrote: > > Well, the day is finally here. My J tube surgery is scheduled for > Sept.14th. Dr. Korson is on rounds the week and weekend that I am > going to be there. He will be following me very closely. I have an > Adult GI Specialist that I met with in March and he will be working > with Dr. Korson as far as my feeds go. He is not experienced with > Mito, but told Dr. Korson that he is interested in learning and will > work with him as a team. All the GI specialist at NEMC are Peds GI, > so Dr. Korson thought it would be a good idea to find an Adult GI to > work with him when he has Adult Mito patients that need GI Doctors. > So I am actually the GI docs Guinea Pig. Keep your fingers crossed > that everything goes well. > > My husband Kim and I are flying (Angel Flight) to Boston this Sunday. > I will be admitted to NEMC on Tuesday the 13th and then the surgery > on the 14th. Since we will be there a day early we thought we would > visit a few places if I am physically up to it. I really want to go > and visit " Cheers " which isn't far from the hospital. I think it > would be neat to go there and sit on the bar stools!!! And maybe we > will go out for dinner and a movie. > > Look for updates at my caringbridge website. If you are interested my > web page is: > > www.caringbridge.org/pa/annmarie > > I am so nervous about this surgery. I have thought about canceling it > a few times. Dr. Korson had me go on TPN so that I could gain some > weight before the surgery and with the added weight gain we are > hoping that I will recover from the surgery faster. I guess what I > fear the most is the possibility of being on TPN and J feeds for the > rest of my life. It is a true reality check. Knowing that I will now > be connected to tubes and lines in order to survive, is a scary thing. > > If you pray please keep me in your prayers. If you don't please keep > me in your thoughts. > > Hugs, > Ann-Marie > > ---------- > > > > No virus found in this outgoing message. > Checked by AVG Anti-Virus. > Version: 7.0.344 / Virus Database: 267.10.20/95 - Release Date: 9/9/2005 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2005 Report Share Posted September 10, 2005 Ditto - many have posted that the worst part is waiting for surgery, especially if it is a turning point. Please do try to get a chance to enjoy the city, that always give me something to look forward to when I have to travel to see doctors. Take care, RH > Well, the day is finally here. My J tube surgery is scheduled for > Sept.14th. Dr. Korson is on rounds the week and weekend that I am > going to be there. He will be following me very closely. I have an > Adult GI Specialist that I met with in March and he will be working > with Dr. Korson as far as my feeds go. He is not experienced with > Mito, but told Dr. Korson that he is interested in learning and will > work with him as a team. All the GI specialist at NEMC are Peds GI, > so Dr. Korson thought it would be a good idea to find an Adult GI to > work with him when he has Adult Mito patients that need GI Doctors. > So I am actually the GI docs Guinea Pig. Keep your fingers crossed > that everything goes well. > > My husband Kim and I are flying (Angel Flight) to Boston this Sunday. > I will be admitted to NEMC on Tuesday the 13th and then the surgery > on the 14th. Since we will be there a day early we thought we would > visit a few places if I am physically up to it. I really want to go > and visit " Cheers " which isn't far from the hospital. I think it > would be neat to go there and sit on the bar stools!!! And maybe we > will go out for dinner and a movie. > > Look for updates at my caringbridge website. If you are interested my > web page is: > > www.caringbridge.org/pa/annmarie > > I am so nervous about this surgery. I have thought about canceling it > a few times. Dr. Korson had me go on TPN so that I could gain some > weight before the surgery and with the added weight gain we are > hoping that I will recover from the surgery faster. I guess what I > fear the most is the possibility of being on TPN and J feeds for the > rest of my life. It is a true reality check. Knowing that I will now > be connected to tubes and lines in order to survive, is a scary thing. > > If you pray please keep me in your prayers. If you don't please keep > me in your thoughts. > > Hugs, > Ann-Marie > > ---------- > > > > No virus found in this outgoing message. > Checked by AVG Anti-Virus. > Version: 7.0.344 / Virus Database: 267.10.20/95 - Release Date: 9/9/2005 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2005 Report Share Posted September 11, 2005 Ann-Marie, I will be thinking of you! I am glad you have had the TPN to get some strength before the surgery. I am confident that you will be in good hands. Smiles, a On Sat, 10 Sep 2005 01:12:50 -0400 Ann-Marie Mc peetie@...> writes: Well, the day is finally here. My J tube surgery is scheduled for Sept.14th. Dr. Korson is on rounds the week and weekend that I am going to be there. He will be following me very closely. I have an Adult GI Specialist that I met with in March and he will be working with Dr. Korson as far as my feeds go. He is not experienced with Mito, but told Dr. Korson that he is interested in learning and will work with him as a team. All the GI specialist at NEMC are Peds GI, so Dr. Korson thought it would be a good idea to find an Adult GI to work with him when he has Adult Mito patients that need GI Doctors. So I am actually the GI docs Guinea Pig. Keep your fingers crossed that everything goes well. My husband Kim and I are flying (Angel Flight) to Boston this Sunday. I will be admitted to NEMC on Tuesday the 13th and then the surgery on the 14th. Since we will be there a day early we thought we would visit a few places if I am physically up to it. I really want to go and visit " Cheers " which isn't far from the hospital. I think it would be neat to go there and sit on the bar stools!!! And maybe we will go out for dinner and a movie. Look for updates at my caringbridge website. If you are interested my web page is: www.caringbridge.org/pa/annmarie I am so nervous about this surgery. I have thought about canceling it a few times. Dr. Korson had me go on TPN so that I could gain some weight before the surgery and with the added weight gain we are hoping that I will recover from the surgery faster. I guess what I fear the most is the possibility of being on TPN and J feeds for the rest of my life. It is a true reality check. Knowing that I will now be connected to tubes and lines in order to survive, is a scary thing. If you pray please keep me in your prayers. If you don't please keep me in your thoughts. Hugs, Ann-Marie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2005 Report Share Posted September 11, 2005 Ann-Marie, I wish you all the best for your trip and upcoming surgery. I had a G-J tube put in over the Summer. I can honestly say it has made my life a lot easier. I no longer have to worry about swallowing issues. It's particularly important when I'm having a flare or recovering from infections...even minor ones. Hydration alone has greatly improved and my weight stablized. I'm surprised they are giving you a J-tube and not a G-J tube. Medication can't go through a J-tube. The small intestine can't process it. You'd have to put it through a G-tube. The doc's thought it was better to give me the G-J in case I can't swallow pills or other medication. I know your scared about having the surgery, but I think in the long run you'll be glad you did. It's quite literally been a life saver for me. Hugs, bug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2005 Report Share Posted September 11, 2005 Hi bug, Have you had any trouble with the J tube portion of your G-J migrating up to the stomach? A lot of patients in my tubefeeding support group with G-Js have this problem and the J tube portion has to frequently be placed back into the jejunum. I don't know why Ann Marie's doctor chose J over G-J, but for various reasons I won't enumerate here my doctor felt J was better for me, even though the surgery was much more invasive. I don't need to administer meds through my tubes so that is not an issue. G-Js are certainly more common these days than Js. Glad to hear yours has produced the desired benefit. That's great to hear. Barbara > Re: My J tube Surgery > > Ann-Marie, I wish you all the best for your trip and upcoming > surgery. I had a G-J tube put in over the Summer. I can honestly say > it has made my life a lot easier. I no longer have to worry about > swallowing issues. It's particularly important when I'm having a > flare or recovering from infections...even minor ones. Hydration > alone has greatly improved and my weight stablized. I'm surprised they > are giving you a J-tube and not a G-J tube. Medication can't go > through a J-tube. The small intestine can't process it. You'd have to > put it through a G-tube. The doc's thought it was better to give me > the G-J in case I can't swallow pills or other medication. > > I know your scared about having the surgery, but I think in the long > run you'll be glad you did. It's quite literally been a life saver > for me. > > Hugs, > bug > > > > > > Medical advice, information, opinions, data and statements contained herein are > not necessarily those of the list moderators. The author of this e mail is entirely > responsible for its content. List members are reminded of their responsibility to > evaluate the content of the postings and consult with their physicians regarding > changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2005 Report Share Posted September 11, 2005 Hi Barbara, no problems with migration...however, I do have a problem with the G portion. Soon after I got it, it began to leak from the plug. They believed it could have been from gasses building up in my stomach. So, they permanently sealed it with another plug that they found. Originally, this was to be a temporary thing, but the plug fit so tightly that we weren't ever able to get it out again. The nurse said I could get a button type port soon so they weren't worried about the G for now. Somewhere I read that tubes need to be replaced every 6 to 9 months due to breakdown of the plastic. Is that what you've heard too ? bug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2005 Report Share Posted September 11, 2005 Hi Bug, It sounds like your GJ tube has really helped you a lot. I used to have a GJ but the J part kept migrating back into my stomach so they switched to a separate G and J. I put all my meds through the J-tube and so far haven't had a problem with absorbing them, with the exception of CoQ10, but there could be several reasons behind my lack of absorption with the CoQ. If your stomach ever stops working and you can't use the G part of your tube for meds, know that the j-tube part is definitely an option, too. Malisa Re: My J tube Surgery Ann-Marie, I wish you all the best for your trip and upcoming surgery. I had a G-J tube put in over the Summer. I can honestly say it has made my life a lot easier. I no longer have to worry about swallowing issues. It's particularly important when I'm having a flare or recovering from infections...even minor ones. Hydration alone has greatly improved and my weight stablized. I'm surprised they are giving you a J-tube and not a G-J tube. Medication can't go through a J-tube. The small intestine can't process it. You'd have to put it through a G-tube. The doc's thought it was better to give me the G-J in case I can't swallow pills or other medication. I know your scared about having the surgery, but I think in the long run you'll be glad you did. It's quite literally been a life saver for me. Hugs, bug Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2005 Report Share Posted September 11, 2005 Yes, I've been told average tube life is 6-9 months. Mine has lasted for 2+ years with tender love and care, but currently it has suture tied around it in two places to seal leaks--a surgeon's creative solution. The kind of Mic-Key J-tube I have can only be placed with a 3-4 " incision, so when it gives out we will have to go to some other kind of tube that can be placed the " easy " way. There is a Mic-Key J-button, but those have to be replaced every 3 months (sometimes sooner when the balloon gives out) and would require radiology or surgery to place each time. This could create interesting situations on weekends or holidays when the balloon gives out. Some J-tube patients have resorted to an unconventional use of a Mic-Key G button in a J-stoma and the ones I know feel this works okay. They can replace the G-buttons themselves every 3 months or whenever they give out. We may try this when a change becomes necessary. Meanwhile we purchased at our own cost a repair kit for my Mic model so we have replacement parts when things break. The first breakage created an emergency situation (yes, on a weekend) and I don't want to go through that again! Oh yes, the buttons can fall out....and the stoma can close up very quickly. That's the down side of buttons. I have gathered " strategies " from other patients in my tube file, so if and when I have a button, I have the right gizmos on hand to prevent the stoma from closing. Barbara > Re: My J tube Surgery > > Hi Barbara, no problems with migration...however, I do have a problem > with the G portion. Soon after I got it, it began to leak from the > plug. They believed it could have been from gasses building up in my > stomach. So, they permanently sealed it with another plug that they > found. Originally, this was to be a temporary thing, but the plug fit > so tightly that we weren't ever able to get it out again. The nurse > said I could get a button type port soon so they weren't worried about > the G for now. > > Somewhere I read that tubes need to be replaced every 6 to 9 months > due to breakdown of the plastic. Is that what you've heard too ? > > bug > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2005 Report Share Posted September 12, 2005 Good information Barbara, thanks for passing it along. bug Quote Link to comment Share on other sites More sharing options...
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