The Chronicle of the Horse
MagazineNewsHorse SportsHorse CareCOTH StoreVoicesThe Chronicle UntackedDirectoriesMarketplaceDates & Results
 
Page 1 of 2 12 LastLast
Results 1 to 20 of 22
  1. #1
    Join Date
    Jan. 20, 2008
    Posts
    642

    Default Feeding Tubes. JTube and PICC. Experiences?

    As some of you know I have Chronic Pancreatitis due to a deformity in the ducts of my pancreas. I've been steadily getting worse and worse with nothing much helping to control pain and vomiting. Basically I am in the hospital one every 1-2 months for a few days. It has been a bad year. By far the worst since I've been diagnosed.

    Today the doctor brought up having a feeding tube placed. I've been through this one before. I agreed to having a PICC line placed so that I could be on TPN for at least 3 months for total bowel rest. Very long story short the PICC line placement was a total failure. They tried 3 times. (One bedside and two in radiology.) The final placement resulted in a clot where the tube was placed the next day. My arm swelled and hardened and it hurt like hell. I had to pitch a fit and demand it be removed because the nurses and the doctor felt I was being dramatic. (Not until I demanded an ultrasound did they find the clot and take me seriously.) They wanted to do another PICC when they removed that one but there was no way I was going to allow it. I've been through some horrible stuff and really bad treatment but that stay took the cake in the worst of the worst.

    Now they are pushing for this again. I do NOT want any tube. But what am I supposed to do? There's no way for me to get better. I refuse to have my pancreas removed (which is the other thing they are pushing). I feel like I am screwed. All my options suck.

    If I haven't had bad experiences with tubes, maybe. But even IVs now result in horrible phlebitis. They did tell me a PICC line may cause issues again.

    I'm considering it, but am still leaning toward no. Plus this is just a short term fix. As soon as I eat again the pancreas starts working and the pain comes back. So I just can't say I think it is worth it in my eyes, but maybe someone here can offer advice.

    My other issue...I want to ride. I've taken 3 months off. I would REALLY like to be able to show this season without worrying I am going to cause an infection in some unwanted nasty tube. I've given up so much already (sold my second horse, gave up my great job, etc) and show season is about all I am looking forward to.

    Thoughts? Experiences?



  2. #2

    Default

    Get a port. Less risk of infection.

    But long term, the pancreas must be dealt with as you know.

    Have you seen more than one surgeon? Does the whole pancreas have to be removed, or have they suggested a Whipple? How old are you? Area of the country?
    LarkspurCO: no horse's training is complete until it can calmly yet expressively perform GP in stadium filled w/chainsaw juggling zombies riding unicycles while flying monkeys w/bottle rockets...



  3. #3
    Join Date
    Nov. 1, 1999
    Location
    Shangri-LA
    Posts
    1,971

    Default

    Have you talked with a specialist with a big name clinic like Mayo? In the end the PIC line is just a short term fix, maybe its time to just deal with the pancreas with a permanent solution and get on with recovery and your life. Just had a friend have 70% of his pancreas removed, man has made a remarkable recovery. JINGLES being sent to you for healing and strength.
    "My treasures do not chink or gleam, they glitter in the sun and neigh at night."
    ~Gypsy saying


    1 members found this post helpful.

  4. #4
    Join Date
    Jan. 20, 2008
    Posts
    642

    Default

    The issue with the pancreas surgery is that the whole pancreas needs to be removed. Basically it is functioning at around 60%. The whipple and the other one (which name escapes me at the moment) is that it only addresses a portion of the pancreas. I am so lucky to have my entire thing ravaged.

    The surgery I need is a complete removal, then they take the pancreas and break it down to remove the islet cells that make insulin. They take those and put them in the liver. They also have to take the spleen and re-route part of the digestive system in the process. The surgery is great as a last resort, IMO. However, there are SO many complications. I have yet to come across a person who has no issues. And I've spoken with many many patients from all over the US. I could try the other surgeries but they damage your pancreas more and you lose islet cells. So if you do have the removal you have a lower islet yield and more than likely will be a brittle diabetic. At this point transplant isn't an option as it isn't offered. (Not sure why.)

    I go to Johns Hopkins now. I am 28 and have had problems my whole life. I was blown off for years and told there was nothing wrong, it was all in my head. CP is hard to diagnose and mine only shows up on an ERCP or MRCP. It took me pitching a fit to get those but when I finally got the MRCP they immediately sent me to Hopkins. But the damage was done.

    My dr is the head of the GI department there. While I am happy with his care, the pancreas is just a terrible thing to have issues with. I've basically resigned myself to a shorter life span, pain and an increased risk in pancreatic cancer. I so wish there were good clear cut options, but there just aren't. I'm pretty medically minded and grasp things well and from all my research it is basically it sucks to be me situation. Which if fine, I've come to terms with it for the most part. I do have my days when I freak out but they are less and less.

    Knock on wood I have only had a few acute attacks. However, when I get they they are REALLY bad. My last one had a lipase level of 5,500. (Normal is below 50.) That landed me in the ICU. I was so sick they wheeled me up and didn't tell me what floor I was on until I got better numbers. (No family in town at that point. Hubby had to fly back from the war zone.)

    Over all the situation stinks.

    With a port I've heard they can fall out. I didn't ask about it, but I will next time. I do agree with the infection risk being a point for the port vs the PICC.



  5. #5
    Join Date
    Nov. 17, 2006
    Posts
    4,192

    Default

    Sorry for your troubles. That stinks. When my husband was going through cancer treatment he had a PICC line. Like you, he got a blood clot and had the same issue with his whole arm swelling etc.
    “Be yourself; everyone else is already taken.”
    ¯ Oscar Wilde



  6. #6

    Default

    Distal pancreatectomy.

    I know your docs. They are good. . You have great care. I will PM you with a name for a second opinion although you may have already been there.

    You're in a rough spot. I would get the power port for now and hang on. Medicine changes often.

    The islet cell transplant is newer. The more done, the more they know.

    Please don't despair. Get the port, it's much safer than a PICC. You will feel so much better hopefully with your nutritional status improved... I've never seen a port fall out. It does require care but you can easily handle it. Get a PowerPort and no more needle sticks .

    Ride.
    LarkspurCO: no horse's training is complete until it can calmly yet expressively perform GP in stadium filled w/chainsaw juggling zombies riding unicycles while flying monkeys w/bottle rockets...


    2 members found this post helpful.

  7. #7
    Join Date
    Jan. 20, 2008
    Posts
    642

    Default

    Quote Originally Posted by ParadoxFarm View Post
    Sorry for your troubles. That stinks. When my husband was going through cancer treatment he had a PICC line. Like you, he got a blood clot and had the same issue with his whole arm swelling etc.
    Oh no. I hate to hear anyone else go through that, let alone be battling cancer with it. I am so sorry.

    I just can't imagine having to deal with any tube/line. I am all for trying something once, but this push again is a hard call. I WANT to feel better but I don't want it at a risk when I've had issues in the past with the treatment. It just doesn't make sense to me. But I also can't be in the hospital all the time.

    I hate my pancreas. HATE. IT. I wish they had been treatments and knew more about how to deal with it. My favorite line is, "there is no text book on how to deal with chronic pancreatitis". Yeah, I gathered that. I am just terrified I'll end up with pancreatic cancer. The only way to guarantee I won't is to remove it. However, there's no promise the complications won't be worse than what I've got now.

    UGH. I wish there was a cure. Or that I could bargain and say 20 years of little to no pain vs a longer life.



  8. #8
    Join Date
    Jan. 20, 2008
    Posts
    642

    Default

    Quote Originally Posted by right horse at the right time View Post
    Distal pancreatectomy.

    I know your docs. They are good. . You have great care. I will PM you with a name for a second opinion although you may have already been there.

    You're in a rough spot. I would get the power port for now and hang on. Medicine changes often.

    The islet cell transplant is newer. The more done, the more they know.

    Please don't despair. Get the port, it's much safer than a PICC. You will feel so much better hopefully with your nutritional status improved... I've never seen a port fall out. It does require care but you can easily handle it. Get a PowerPort and no more needle sticks .

    Ride.
    Yes, please send me a name. I am always up for more opinions if I haven't seen them yet.

    Thank you so much for the positive advice. It is nice to have someone acknowledge how hard the choices are with this!

    And thank you for saying ride. Most people are split. Half my docs say ride if you want, the other half (mainly my Hopkins GI) says don't. I tell him he's taken away cheese, wine, soda, chicken fingers and ice cream-he can't take my horses too. I now tell him not to ask if he doesn't want to hear something he doesn't like. He asked me if I could "race him using a robotic camel like they do overseas". He's a wonderful man but knows nothing of horses. I just laughed and asked if he would like to come watch that show. My horse would freak out.

    And no needle sticks would be amazing! As it is my veins are horrible and don't hold and IV for more than 24 hours and I am a hard stick.



  9. #9

    Default

    I sent you a PM. .

    Just to be clear, my saying ride isn't medical advice . Just happy person advice. You should make your decisions with your own team...THEY are your advisors, YOU captain your own ship.

    The pancreas is an organ most stay away from. It's wily.

    Your risk of pancreatic cancer is still low. I'm taking or that you are getting MRIs done there? Not CT, but MRI?

    ETA: using your gut is best. When you are done with your TPN course, try to feed the gut with either regular by mouth or through a tube if necessary.
    LarkspurCO: no horse's training is complete until it can calmly yet expressively perform GP in stadium filled w/chainsaw juggling zombies riding unicycles while flying monkeys w/bottle rockets...



  10. #10
    Join Date
    Jul. 8, 2003
    Location
    South of the North pole...... barely
    Posts
    1,238

    Default

    Not sure it would have any relevance to your case, as I know nothing about Pancreatitis...
    Anyways, when she was little my DD had a G-tube(button style once healed) for almost 3 years. We put the button in once the site healed & never had problems with it getting in the way or catching on things.
    She was a very active baby/toddler, but it didn't bother her.

    Sending jingles you are able to find some type of relief & be able to get back to riding.



  11. #11

    Default

    This is probably a really stupid question, but is a transplant a consideration? I don't even know if that's an organ they do transplants for.
    http://www.tbhsa.com/index.html

    Originally Posted by JSwan
    I love feral children. They taste like chicken.



  12. #12

    Default

    Pancreas transplants are done and usually at the same time as a kidney, usually in diabetics with renal disease.
    LarkspurCO: no horse's training is complete until it can calmly yet expressively perform GP in stadium filled w/chainsaw juggling zombies riding unicycles while flying monkeys w/bottle rockets...



  13. #13
    Join Date
    Dec. 15, 2005
    Posts
    3,584

    Default

    I think the ports must be fairly comfortable as I have never heard anyone complain about them. There is a risk of infection, but since you are not immune suppressed, I would think it would be low. Talk with your doctors to see what they think about a port. I wonder if getting 6 weeks of rest for your pancreas would make everything better.



  14. #14
    Join Date
    Nov. 17, 2006
    Posts
    4,192

    Default

    Quote Originally Posted by SFrost View Post
    Oh no. I hate to hear anyone else go through that, let alone be battling cancer with it. I am so sorry.
    Good news is that after two surgeries and three rounds of chemo, all is well!

    I am hoping you soon fine the relief you deserve! Jingles your way.
    “Be yourself; everyone else is already taken.”
    ¯ Oscar Wilde



  15. #15
    Join Date
    Aug. 12, 2002
    Location
    Calera, AL
    Posts
    1,901

    Default

    I thought I had read that pancreatitis didn't really up your chances for pancreatic cancer. Is that wrong? I was diagnosed with CP in 2001 but I've had a fairly easy road compared to other stories I've heard and definitely easier than SFrost! Sorry to hear you're having such a hard time.
    "Dogs are man's best friend. Cats are man's adorable little serial killer." -- theoatmeal.com



  16. #16

    Default

    Quote Originally Posted by alabama View Post
    I thought I had read that pancreatitis didn't really up your chances for pancreatic cancer. Is that wrong? I was diagnosed with CP in 2001 but I've had a fairly easy road compared to other stories I've heard and definitely easier than SFrost! Sorry to hear you're having such a hard time.
    It is a risk factor, but not the biggest one.

    Smoking is the biggest risk factor. Being African American is another, although it is not quite known whether that is due to race or am increase in the rates of obesity and diabetes in the population. Male is another risk factor. Obesity and diabetes as well.

    African American males who are obese, have diabetes and smoke are at risk for many conditions, pancreatic cancer being one. Certainly less common than heart disease but without good screening tests. Typically once pancreatic cancer is discovered, it has already progressed to being non operable, and surgical cure is the only true cure.
    LarkspurCO: no horse's training is complete until it can calmly yet expressively perform GP in stadium filled w/chainsaw juggling zombies riding unicycles while flying monkeys w/bottle rockets...



  17. #17
    Join Date
    Jan. 20, 2008
    Posts
    642

    Default

    Right Horse is correct, it is fairly low. I think the stats var between 3-5% increase vs that of a normal person. So, overall that's not bad. I'm just a pessimist as I've had terrible luck with my CP. Everything that isn't supposed to happen has. From what I've been told my my case happens in only 5% of people. I'm so darn lucky. (not)

    I know that your advice was happy person advice Right Horse. It is just nice to hear someone say do what you feel is right. Most people, and the doctors as I said, are split. I don't feel any worse when I ride and in fact I normally feel better, at least when I am riding since I have to think about something other than the pain. When my horse is naughty and hollow I tend to feel it more though. So he just needs to be a good boy. He normally is, but he has his days.

    I get ERCPs fairly often to check the ducts, since the cause of my CP is pancreas divisum. For those of you who aren't familiar, that is a deformity of the pancreatic duct which causes the enzymes not to drain properly and get stuck in the pancreas. Basically it causes damage to the tissue in the pancreas over time. However, there are people who have this and never know. For most it never causes an issue. Mine is bad in that even after we have opened up the ducts (I think it has been 5 ERCPs now just to do that), they keep closing back up. It is a toss up on if it is best to keep doing it because of the scar tissue that forms.

    We hope that with the monitoring of the pancreas we would catch any cancer before it was too late. So I suppose that in some ways it is good we know there is an issue and it can be watched for any changes.

    I just have a heck of a time trying to make decisions since thus far I've had such bad luck. I obviously listen to my doctors for the most part, but the last PICC was such a bad choice. I was interested in other's experiences and thoughts. Maybe it will help the pro/com list and I'll have more info.



  18. #18

    Default

    Quote Originally Posted by SFrost View Post
    Right Horse is correct, it is fairly low. I think the stats var between 3-5% increase vs that of a normal person. So, overall that's not bad. I'm just a pessimist as I've had terrible luck with my CP. Everything that isn't supposed to happen has. From what I've been told my my case happens in only 5% of people. I'm so darn lucky. (not)

    I know that your advice was happy person advice Right Horse. It is just nice to hear someone say do what you feel is right. Most people, and the doctors as I said, are split. I don't feel any worse when I ride and in fact I normally feel better, at least when I am riding since I have to think about something other than the pain. When my horse is naughty and hollow I tend to feel it more though. So he just needs to be a good boy. He normally is, but he has his days.

    I get ERCPs fairly often to check the ducts, since the cause of my CP is pancreas divisum. For those of you who aren't familiar, that is a deformity of the pancreatic duct which causes the enzymes not to drain properly and get stuck in the pancreas. Basically it causes damage to the tissue in the pancreas over time. However, there are people who have this and never know. For most it never causes an issue. Mine is bad in that even after we have opened up the ducts (I think it has been 5 ERCPs now just to do that), they keep closing back up. It is a toss up on if it is best to keep doing it because of the scar tissue that forms.

    We hope that with the monitoring of the pancreas we would catch any cancer before it was too late. So I suppose that in some ways it is good we know there is an issue and it can be watched for any changes.

    I just have a heck of a time trying to make decisions since thus far I've had such bad luck. I obviously listen to my doctors for the most part, but the last PICC was such a bad choice. I was interested in other's experiences and thoughts. Maybe it will help the pro/com list and I'll have more info.
    It STINKS. I am so sorry. It really does affect quality of life, and I wish it would just go away for you.

    Are they stenting the ducts? And they are closing around the stents?

    Have you made a lot of dietary changes?

    I really am sorry . Ride that horse!
    LarkspurCO: no horse's training is complete until it can calmly yet expressively perform GP in stadium filled w/chainsaw juggling zombies riding unicycles while flying monkeys w/bottle rockets...



  19. #19
    Join Date
    Aug. 9, 2007
    Posts
    9,131

    Default

    I really wish that the 3 hospitals in NYC who were doing the study on pancreatic transplants would place you and alittlegray in their study. Most of the patients were diabetics, but a few were those with other pancreatic issues. All the transplants were successful. My only experience with feeding tubes has been with a cat when she contracted crypto and then got hepatitis from the then experimental drug ketaconozole that she was given. She wasted away until my vet gave in and put in the feeding tube. The feeding tube was all plastic, no metal, and had a cap on the end, and came up by her shoulders like a submarine periscope. Easy to clean, and easy to use. I fed her every 2 hours all night, and my vet hospital kept her all day while I was on trial and they fed her for me. I don't know why human doctors don't use a plastic tube with a plastic cap that comes up thru the area of the collarbone on humans. And use the same method of feeding, which you could then do yourself for however long you needed to, weeks, months, however long. Dominica Lee the cat lived 5 more years and died at the age of 18 of heart failure, which is about 90 in your years. Which I hope you live to be while pain free.
    when my aussie Binkie had pancreatitis for a few weeks when she was a year old, it was very baneful and very scary. I think that you and alittlegray deserve to be placed in a program for pancreatic transplants so you can be pain free for decades. Emory was doing some studies, but the 3 NYC hospitals were transplanting actual pancreas.



  20. #20
    Join Date
    Mar. 24, 2004
    Location
    Pottstown, PA (East Coventry)
    Posts
    3,191

    Default

    Earlied today I was paying a large medical claim for a potential heart transplant patient. On the transplant discount agreement it lists all the different types of transplants and the rates.
    Cleveland Clinic offers:
    kidney/pancreas
    Islet Cell-Auto Pancreas
    liver/pancreas
    Pancreas
    As part of the agreement they list local lodging for transplant patients and their families that provide special rates. These are not regular hotels.

    The heart patient stayed in one for a couple of weeks afterwards for follow-up testing on his LVAD since he was from WV and too far to commute.

    I believe Mayo Clinic does to a pancreas transplant.

    I would revist the pancreas transplant with a hospital like Mayo or Cleveland Clinic. Not that transplants are not without risks.
    I used to have access to a website that listed outcomes of transplants by type and hospital at various intervals- 60, 90 day, 6 month, 1 yr, 3 yr, 5 yr etc... I will see if I can dig it up.

    Here is one with 1 yr outcomes. Univ of MD has done more than Hopkins.
    http://www.srtr.org/csr/current/Cent...lity=MDUMTX1PA
    Last edited by SonnysMom; Dec. 18, 2013 at 03:28 PM. Reason: added website
    Oh, well, clearly you're not thoroughly indoctrinated to COTH yet, because finger pointing and drawing conclusions are the cornerstones of this great online community. (Tidy Rabbit)



Similar Threads

  1. PICC Line? Tell me I'm being a baby...
    By SFrost in forum Off Topic
    Replies: 15
    Last Post: Jun. 29, 2013, 11:08 PM
  2. Tick tubes
    By okggo in forum Around The Farm
    Replies: 3
    Last Post: Apr. 7, 2012, 11:04 AM
  3. Feeding baking soda? Experiences? Yea or nay?
    By sublimequine in forum Horse Care
    Replies: 41
    Last Post: Sep. 13, 2011, 03:07 PM
  4. Riding with a PICC line?
    By Punkie in forum Equestrians with Disabilities
    Replies: 7
    Last Post: Jun. 13, 2010, 01:06 PM
  5. Any riders/instructors that have had a picc line?
    By Couture TB in forum Equestrians with Disabilities
    Replies: 11
    Last Post: May. 23, 2010, 01:28 PM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •  
randomness