goofieslonglostsis
DIS Veteran
- Joined
- Nov 23, 2007
- Messages
- 2,641
Of course I can use Google -and do- but I'm also curious about individuals experiences. I know there are at least some moms on here with kids with a feeding tube and a few adults with one so was thinking the DIS might be a nice place for that added info. Sorry for the very very long post, by the way! 
After years of messing around I kinda went 'enough already' on friday. Made an apointment with my GP knowing very well that the 'simpler' options are a passed station by now. Some background info; I've got a connective tissue disorder. Because of that, amongst others I get sick to my stomach very easily, throw up easily, whole digestive track has a mind of it's own. Swallowing becomes very painfull at unexpected moments, leaving me basically unable to drink or eat for hours or days. On other days I have trouble opening my mouth or am throwing up bad because of the disorder itself or the opioids I'm taking (all other options have been tried, can't do without and my current cocktail is the most friendly on my stomach) It's been getting worse over the years and is expected to get worse on some fronts.
The disorder itself is not curable, so any symptoms are trying to be managed on the symptom level. Meds for keeping the reflux in place where possible, anti-naussea (spelling?) meds don't work once I hit the 'throw up like crazy'-point. Added dilemma is that I'm on a energy and protein enriched diet for my sensatice skin and history of pressure soars. I've had all types of fluid foods gone by over the years. Drinks, soups, fantomalt, you name it; it entered the house (for as far as I could stand them, allergywise).
It does no longer do the trick. Can not keep them down on the bad days. Taste and structure, both get in the way too much. I've been struggling for over a year after hitting the 'this is the last option in this level I've got' with the dietician. While thankfully I don't really loose weight when looking at the big picture, it is a constant struggle. Day and night are all about needing to eat, needing to drink, needing to maintain weight, working hard to add a kilo and loosing it again in a day. Days of not being able to take meds. Days of spending laying down as that reduces the amount of throwing up. No biggie for every once in a while but not as a standard. Eating and drinking is becoming a nightmarrish nutricional cousin of Bridzilla or something.
Too much laying down, not being able to always take my meds when need be, it causes my stamina to deteriate. Something I tend not to get back after a situation improves, known problem for my body. Not always being able to drink very spread out over the day isn't tolerated very well by my bladder or kidneys. I've got a continent urinostomy and keeping both in good shape is very important to upkeep that urinostomy.
Long story, long time having it on my mind, long time going back and fro. It's not THAT bad, I keep telling myself. Aren't I making it worse than it is, being a baby about it and shouldn't I just suck it up and deal with it? I look like the Dutch saying goes 'dutch wealth and health'; read; fat enough to spare or burn off.
Eventhough I'm only 2 or 3 kg's away from having no longer a healthy bmi, I've ran into very many medical professionals staring blindly at the BMI and saying "nothing wrong". I tend to be the same way, but have also learned over the years that my body is a lot more delicate and very intolerant for even the slightest disbalance at whatever front. When we first started adding the medical liquid foods to my diet I couldn't believe the great effect it had on my body. Amazing to see what proper nutricion can do!
Anywho, today I went to my GP to talk about all of this, being fed up, knowing it's not getting better but looking at my medical history probably worse and isn't it time to start having a peek at the option of a feeding tube? Not as the soul source of nutricion, but as an addition to whatever I can eat and drink myself. OK, that went a bit faster than expected.
He reffered me to the academical medical hospital in our region. I've been to that department back in 2006 and was NOT impressed. Each time another doc, most of them interns. No problem in and of itself, but it became one when nobody knows about my disorder, seems willing to hit the books and/or learn about it, each appointment they suggest a totally different approach and no proper reason about why keep changing etc. Back than; no help at all. GP still wants me to go there though, seeing as they should know more as the docs at the regular hospital. He did talk about the negative experience in 2006 in his referral. At first I couldn't get in to be seen until late oct and being told that would probably be cancelled anyway due to changing schedules by then. Called GP back it that wouldn't be a tad bit late. Couple of hours later, GP's assistant calls me; they've arranged an appointment for me. Tomorrow afternoon!
I'm glad with it, but also a bit scared. Going very fast all of a sudden. Also very worried about yet again not being taken seriously, solely being judged on the BMI, too common total lack of knowledge about this disorder and always having a 'look very healthy' face. On the other hand; also yeiks if they DO take it seriously and the subject of feeding tubes does get talked about.
Again, sorry for the way too long of a post. What I really want to ask those with experience; any tips, do's and dont's? What are your experiences with feeding tubes, what to be on the look out for, any
etc. etc.? All experiences are very welcome.
After years of messing around I kinda went 'enough already' on friday. Made an apointment with my GP knowing very well that the 'simpler' options are a passed station by now. Some background info; I've got a connective tissue disorder. Because of that, amongst others I get sick to my stomach very easily, throw up easily, whole digestive track has a mind of it's own. Swallowing becomes very painfull at unexpected moments, leaving me basically unable to drink or eat for hours or days. On other days I have trouble opening my mouth or am throwing up bad because of the disorder itself or the opioids I'm taking (all other options have been tried, can't do without and my current cocktail is the most friendly on my stomach) It's been getting worse over the years and is expected to get worse on some fronts.
The disorder itself is not curable, so any symptoms are trying to be managed on the symptom level. Meds for keeping the reflux in place where possible, anti-naussea (spelling?) meds don't work once I hit the 'throw up like crazy'-point. Added dilemma is that I'm on a energy and protein enriched diet for my sensatice skin and history of pressure soars. I've had all types of fluid foods gone by over the years. Drinks, soups, fantomalt, you name it; it entered the house (for as far as I could stand them, allergywise).
It does no longer do the trick. Can not keep them down on the bad days. Taste and structure, both get in the way too much. I've been struggling for over a year after hitting the 'this is the last option in this level I've got' with the dietician. While thankfully I don't really loose weight when looking at the big picture, it is a constant struggle. Day and night are all about needing to eat, needing to drink, needing to maintain weight, working hard to add a kilo and loosing it again in a day. Days of not being able to take meds. Days of spending laying down as that reduces the amount of throwing up. No biggie for every once in a while but not as a standard. Eating and drinking is becoming a nightmarrish nutricional cousin of Bridzilla or something.
Too much laying down, not being able to always take my meds when need be, it causes my stamina to deteriate. Something I tend not to get back after a situation improves, known problem for my body. Not always being able to drink very spread out over the day isn't tolerated very well by my bladder or kidneys. I've got a continent urinostomy and keeping both in good shape is very important to upkeep that urinostomy.Long story, long time having it on my mind, long time going back and fro. It's not THAT bad, I keep telling myself. Aren't I making it worse than it is, being a baby about it and shouldn't I just suck it up and deal with it? I look like the Dutch saying goes 'dutch wealth and health'; read; fat enough to spare or burn off.
Eventhough I'm only 2 or 3 kg's away from having no longer a healthy bmi, I've ran into very many medical professionals staring blindly at the BMI and saying "nothing wrong". I tend to be the same way, but have also learned over the years that my body is a lot more delicate and very intolerant for even the slightest disbalance at whatever front. When we first started adding the medical liquid foods to my diet I couldn't believe the great effect it had on my body. Amazing to see what proper nutricion can do! Anywho, today I went to my GP to talk about all of this, being fed up, knowing it's not getting better but looking at my medical history probably worse and isn't it time to start having a peek at the option of a feeding tube? Not as the soul source of nutricion, but as an addition to whatever I can eat and drink myself. OK, that went a bit faster than expected.
He reffered me to the academical medical hospital in our region. I've been to that department back in 2006 and was NOT impressed. Each time another doc, most of them interns. No problem in and of itself, but it became one when nobody knows about my disorder, seems willing to hit the books and/or learn about it, each appointment they suggest a totally different approach and no proper reason about why keep changing etc. Back than; no help at all. GP still wants me to go there though, seeing as they should know more as the docs at the regular hospital. He did talk about the negative experience in 2006 in his referral. At first I couldn't get in to be seen until late oct and being told that would probably be cancelled anyway due to changing schedules by then. Called GP back it that wouldn't be a tad bit late. Couple of hours later, GP's assistant calls me; they've arranged an appointment for me. Tomorrow afternoon!
I'm glad with it, but also a bit scared. Going very fast all of a sudden. Also very worried about yet again not being taken seriously, solely being judged on the BMI, too common total lack of knowledge about this disorder and always having a 'look very healthy' face. On the other hand; also yeiks if they DO take it seriously and the subject of feeding tubes does get talked about.
Again, sorry for the way too long of a post. What I really want to ask those with experience; any tips, do's and dont's? What are your experiences with feeding tubes, what to be on the look out for, any
etc. etc.? All experiences are very welcome.
]
- and that's it. Oh, and to hand over a note from my GP, signed and all with my weight on it. Never mind him putting it in the referral already, nooo way apparently I can be the weight we claim. 
