Feeding Tube

oh you guys are wonderful.....I really didn't mean it to sound like I was fishing for sympathy today. Just a really rough day and feeling sorry for myself again!!

I was just asked on my diary how the feeding tube works so for the sake of other sleevers/bypasssers who may need it in future am going to copy/paste it in here just in case....

For me...the tube is directly in my jejunum so is central in my lower chest (noting I had to have the bypass so things are all over the place now). There are also tubes into the stomach but mine is useless so has to go into my jejunum. It hangs out about 20cms on the outside and is about 1cm in diameter. It has a cap on the end so at night I hook up a wire to the end of it, and loop the wire through the machine (which is quite small - about the size of a large wallet) and into a large sachet of this gross liquid which I hang off a hook by the bed. I then plug in the machine, press a few buttons and then overnight while I sleep the feed goes in. I don't feel the feed at all. I do feel the flush I have to do to it using a large syringe of warm water before and again in the morning but it doesn't hurt, just not pleasant. The pain comes from the tube just being in such a horrid spot and moving about causes blistering of the skin around it and underneath the skin (skin granulations) which oozes quite disgustingly. I had it put in during a surgery as it was sewn into my insides and that was a nasty op I wasn't expecting to be that bad I won't sugarcoat that. 

In addition to this some more info someone may find useful one day.....the feed, machine, wires, syringes etc are all provided by a particular company and the first batch is arranged by the dietician. After that they call you to order once a month. The machine was provided free to me (though I have to give it back so can't break it!). The wires, syringes, feed cost about $120 a week including delivery so not too bad really.

Hope this helps someone one day.....

Am going to head to sleep now and try to wake up more positive tomorrow. Thanks again to all of you....
xxx

         

Yep, you are in hell and are handling it so well. Sending big hugs and hope they get you better asap

Thanks Nini. I really appreciate your kind words and support. Am just so tired after all of this its getting harder and harder to stay positive. The feeding tube is a daily reminder that this is nowhere near ending for me. I stubbornly refused to be on the feed a couple of weeks ago after another week in hospital and ended up very ill again so have had to force myself to do it. Its a bit like a diet...starting again is always hard! Some days I find hope in hearing others are doing so well and living normal lives by now and others like today its hard to hear. I wouldn't wish this on anyone but should anyone ever have to go down this route like me I hope they find this thread, and I really hope by that time I'm all fixed up once and for all and can help someone else through it.

Suzy77 I think your so brave and kind to post messages like this. For those who are unfortunate to have to follow this rocky path they will at least know they are not alone. I am pre-sleeve and I think to make a informed decisions we need to hear about everyone's journey not just the smooth and easy one's. 

While my words can't make much of a difference I admire your effort to keep positive against the odds. Please keep posting. You can vent on here and let some of the pressure out. None of us know how we would cope if we were in your position. Some days you just need to pull the bed covers over your head and have a good cry.


regards Nini.

Thanks for your reply Nini.... I've had the pain since it went in a couple of months ago - I was never told it would cause me this agony. Some days worse than others. I've got skin granulations from it moving too much and have a steroid cream the peg nurse had my GP prescribe to treat those when they form as they are such a seering pain. Other than that my surgeon is aware of how bad it is and says unfortunately I have to put up with it. I'm on fentanyl patches and liquid morphine for other pain anyways but it still takes it out of me some days....(FYI its a J peg not G peg so if you're a nurse you will understand the difference!). Moving about definately makes it worse but after 9 months of all this stuff I am so desperate to be normal and at least be able to walk.....I know I should be more patient but its just one of those depressing days I want it all to be over with and get to be like all the other sleevers who by this point are living their lives.....oh dear I am having a really bad day. Need to pull myself out of this!!

Hi Suzy77,

Sorry to hear your having a bad day. I haven't had a PEG tube myself but I have looked after quite a few and none of them complained of severe pain from the Tube after the initial few days unless it got accidentally pulled. Is this pain new or did you have it before the tube was put in? 



best wishes.
Nini

Its a long long story.....(my diary is probably best place to explain it - called "a long difficult journey but no regrets" in the diary section of the forum).

In a nutshell....13 (I think...have lost count) hospital admissions since my original sleeve op last October (not been a month where I haven't been in hospital since then). 4 further surgeries since that one including conversion to bypass (had no choice as my heart nearly gave out from severe malnourishment and my stomach had basically given up working) plus surgeries on my bowel, leftover stomach etc. 11 endoscopies. Tired a stent. 4 dilatations. More ct scans and x rays than I can count. 3 nasal gastric feeding tubes. Now on this feeding tube and likely another big op still to come (plus the tube out op when the time comes). Not a leak - all caused by other problems though rare ones so I don't want to scare anyone.  

I'm skinny though so its not all bad!! A size 8 - 10!! I'm a big believer in the surgery as seen so many have success. Just hasn't been a fun ride for me. I apologise cos I'm usually a lot more positive but today am having a really bad day with pain so particularly whingy!!!

oh wow!!!

what complications have caused you to have a tube put in? I hadnt heard of it before

I'm just having a particularly bad day with pain from the feeding tube I have inserted directly into my tummy so thought I'd post a topic on here as I can't seem to find anyone else who has had one of these and so if you have please let me know so we can whinge together! Or for future sleevers who have complications and have one its good to have a topic started just in case so we know who to contact for advice.

Anyways bloody thing isn't even solved by the morphine I'm on so if anyone has any tips please let me know....Surgeon seems to think having a foreign object through the muscle wall is not something a body will react well to so in other words its just something I  need to put up with for now. I've had it a couple of months and will have it a few months to come until I can eat better, my weight stops dropping and I have no other issues. Hope no one else has to have one of these!!!