Feeding Tube

I have a question about feeding tubes for anyone who has had or has one. I currently have one (have for 4 years now ). My existing tract is 2.5 years old and have had it replaced many times(under conscious sedation cause I have extreme pain when they pull the tube out). So my thing. (and yes I am the one who probably needs the reversal but I need help with this faster). I have had issues with my tube since January. I would have times where blood comes out of the tube itself (so coming from the stomach). They replaced the tube after a couple of hospital stays with that to a different type of tube. That seemed to help that problem only to lead to leaking around the feeding tube (lots of gastric juice leakign all over my clothes causing burns on my skin). So they went back to the old tube on Oct 15th. Well a couple of days ago the bleeding started again but so did pain!!!!!! So I called the interventional radiologist who does my care and he had me come in right away to change to a different type of tube. Well the bleeding seemed to have slowed (which is good) but the pain got worse! I have been to the er where they treat with meds and street you and have talked with my surgeons office with no answers. They said it might just be this way. It cannot be this way. I was wondering what kind of pain peopel have had with g-tubes and how intense. My pain is stabbing and burning and its around a 6 on their lovely pain scale (0-10, 10 being the worst pain ever). I am at wits end and cannot keep doing this. They will not do the reversal for another year or two, when my esophagus starts to show signs of wear and so I need the tube till at least then and maybe for the rest of mylife depending on how much is fixed by the reversal. I just need advice sicne sometimes, I think us sharing our experiences helps us get better medical care cause unfortunately my dr only has 2 patients having permanent feeding tubes. Thanks

Hey Hon!  I have no advice as never had a feeding tube.  I just wanted to tell you that my heart and prayers go out to you!!!  Last night after reading your last post I read your profile/blog.  You are sooooo young and to have to endure all this, well I can;t put it into words.  All I can say is that I am soooooo sorry and you are in my prayers and thoughts.  I pray that things get better for you and that you can enjoy life without sooooo many hospital & medical issues!
Healing HUGS & Prayers!

Keep us posted!

Thanks so much, I am usually really upbeat but the last week I have not been able to eat very much (at least as much as I usually eat in a day) it is cut in half and I really love to eat (even though it is such a small amount). I have just had really bad pain from whatever the hell is going on and so I am just frustrated. Thanks for the post, it really helps. I will keep everyone posted.

WOW......I haven't had nor do I know anyone with a tube. But I just wanted to tell you that your story brought tears to my eyes.......Your way too young for all these problems, and on a daily basics, I can't even imagine what you go through....My heart goes out to you.....I can't believe there making you go through this.....You would think there would be an alternative......I don't understand why they would want to wait? You must be a very STRONG woman, because I don't think I could mentally handle this everyday......

I will pray for you everyday, for some kind of resolve.....May God relieve you of this pain.......Please keep us updated, this is a story every person should be aware of......

If you ever need to vent, PM me.......I can always give you my phone number too.....

Take care, Kelly

I handle this daily because there is always someoen out there that is worse than me. I have a passion for animals and really do (three horses, 2 goats, 4 cats, 1 dog, 1 bird, and 2 donkeys (I foster), 5 kittens (I am fostering) and a mama kitty (well soon that I am fostering)). they keep me going. MY family has been great and the people on here are great. I just hope they figure out something soon. I might take you up on the venting too, pain makes you really angry and frustrated no matter how much you like your surgeon, nothing is ever fast enough!!!!!!!!!

Alannah

I cannot personally imagine the hell you are going through!
Keep fighting!!! There is a surgeon out there that will help you, have faith.

Thanks, I know my surgeon will help me, and everything with the medical profession is hurry up and wait. I will never give up (I don't think). And yes, I do go through hell every day but I refuse to let it get me down period. I just hope someone figures soemthign out with the tube soon, it really hurts bad.

Alannah

My thoughts and prayers are with you. I pray this all gets taken care of and you are feeling better soon.

Hugs, connie d

 

 

thanks, its nice to know people care about me. I jsut get frustrated but I have had great support from my family (my mother especially) and the people on here. Thanks

 

Oy vey!  I can only say you're a saint and I can't imagine going through what you're going through.  IMHO, doing the same thing over and over just make sense, though.  Have you tried other hospitals/surgeon for different options?  Check out Dr Buchwald at the UofM, he's a genius at revisions and has TONS of experience with them.

Sorry, I have no experience with feeding tubes to offer, but hope you find answers!