It's been a blur the past week.
Spent a day in hospital stabilizing stuff, but got to spend C-Mas at home. IT was fun watching my son opening all his gifts and getting so excited about all his toys. It almost made me "feel something" instead of feeling numb like I do 99.9% of the time. I almost felt human. Able to feel, when normally I am unable to feel. The past 2 years at least - feelings have eluded me.
I'm facing a few options regarding tube feeds right now:
1) Take 1 day off work per week to go in for tube feeding. THis would deplete my vacation bank REALLY quickly and I'd also feel totally useless sitting in a hospital bed when I could really be working (or doing something ELSE) and running the feed at the same time.
2) Do night tube feeds. But then I would have to have a tube in my face all the time and it would be totally undoubtedly obvious and in your face to everyone I meet. I'm OK with people at work because they know I've been hospitalized several time in the past while so it's no secret there. I still fear judgement a little bit by my acquaintances or distant co-workers. Because face it, people like to gossip...
3) Getting a PEG tube put in. This one seems pretty drastic and I was quite frankly, SHOCKED that my gp suggested it. I don't think I'm "THAT BAD" to warrant such a thing! But he's leaning to this alternative because it solves both problems - I can to the tube feeds and go to work at the same time AND it's not totally obvious or offensive since it's concealed under your clothes.
I dunno - anyone have any experiences with OP tube feeds or G tubes?
Help me out... I've gotta decide or at least put my 2 cents in if they'll let me.
On a different note, I tried on clothes @ H & M today. I wanted to try and put things in perspective, so I tried on some kids clothing. I couldn't belive it when the size 11-12 kids jeans were too loose on me. They were short but the legs and waist were actually LOOSE! What an effing mess. My head is so fucked up right now, I'm even finding it hard to believe the black and white evidence that I'm smaller than the normal person. My head keeps telling me - they just make kids sizes bigger these days - which is probably partly also true, but my rational mind is battling my irrational ED mind. The battlefield is my body and my sanity.
Keep holding on, Tia. I believe in you. This is such a daunting enemy to face, but the fact that you felt almost human on Christmas means that you're making progress. You recognize where you are in recovery, and that's most important.
ReplyDeleteHugs!
if you learn to put your own tube in you don't have to have it in all the time. when i do feeds at home i put it in at bedtime and take it out when the feeds are through. the tubes are good, if kept sanitary for at least two weeks. i've also considered a PEG but decided that would be an ultimate give in to the ED. it would be easier in many ways but you have to be honest with yourself with any of the options....are you going to cooperate and do it? if you do night feeds, will you commit doing what your dr recommends for dosing. would you do them during the day? what if you start to gain weight? do you want to gain weight? are you willing?
ReplyDeletepersonally i would stay as far away from tube feeding as possible. i have become dependant on it since starting and i always recommend forcing oneself to keep eating real food. it's not impossible. i've spent many months soley dependant on the tube then slowly introducing ensure orally, then working up to soft food.....it just messes with everything anatomically and mentally. LIFE involves food, not tubes. so what of your options are going to give you more life? i've done options one and two and still do feeds at home and at least with the outpatient feeds you're closely monitored and get electrolyte replenishment too, hopefully reducing the erratic days you need in hospital.
ultimately it's up to you. let me know what you decide. big decisions. thinking of you.
hey babe,
ReplyDeleteI do not know much about tube feeding but I do want to say congrats on being home for xmas and good luck on the tube decision. I have no experience but I do think jules' advice is good. I can see how a tube can be a slippery slope.
xoxo
-Lisa
I'm with flaweddesign. The tube is a symbol of anorexia, and I think you want to get away from that. Is there anyway you can eat food and supplement with Ensure Plus? That is what I do to get my calories in. Do you have to have a tube? I just personally feel that will reinforce the anorexic identity and make it harder for you to become better and return to normal eating and life. Don't let ED draw you in further. Fight, Tia!!!!
ReplyDeleteHi Tia. I've had experience with all the options you are contemplating, and can tell you how they each worked for me, but it really is going to have to be a very personal decision that you are going to have to make.
ReplyDeleteIn 2004, after years of living in hospitals and treatment centers, I decided to really try to get my life together and make it in the real world. Well ... I did ok for a couple of months, but it quickly became obvious that I was not able to keep myself medically stable outside of a hospital, so I was faced with the same options you currently are. Actually, they weren't options at the time.
1.) The first thing my doctor had me do was NG tube feeds as on outpatient, so I could stay in school, and keep working, but he dropped the tube and made me leave it in 24/7 so I had to go to work and school with it in. Ugh. That was incredibly embarrassing and I spend most of my days being stared at and being asked stupid questions. Not fun. And, I had a really hard time being honest with my feeds (I was supposed to do 3 bolus feeds a day, and continuous overnight feeds every night), because I lived alone, but it did help to stabilize me.
2.) So, I did that for about 6 weeks, but then as part of my nursing school program we started doing in hospital clinicals, and the school told me that, and I quote, "you can't wear that to clinical." Meaning, my NG tube, like it was a piece of jewelry or something. Jackasses. They said it made me a "liability and wasn't professional." Whatever. So, I talked with my doctor, and he talked with my school to verify my story, and he agreed to teach me to drop my own NG tube.
So, every day, after I got home from school and work, I'd drop my own NG tube, and hook myself up to my pump. Then, in the morning, once I was set to leave for the day, I'd pull out my NG tube. Rinse, wash, repeat. At first, this option worked a lot better - I wasn't getting stared at constantly, and it made me feel more normal when I was going about my day (didn't have to be reminded of my ED every second of every day) - but, I had a really hard time being accountable with that too, and it was too hard (psychologically, and emotionally) for me to drop the tube every night, so that only lasted about another 6 weeks.
3.) After kind of failing at that, my doctor had me come to his office 3 times a week for NG tube bolus feeds. He's drop the tube, I'd get my feed, and then he'd pull it. I did this for 4 weeks before I got kicked out of nursing school - for being a medical liability - and then just gave up with the outpatient tube feeds, and moved 2,000 miles home, and back in with my parents.
Well, that didn't work because I got sicker & sicker at my parents, went back ip, got out of the hospital, started taking classes again, and started falling even harder and faster. So ...
4.) Met with my childhood doctor, had a very frank discussion with him, and he insisted that I get a G-tube. He said, I could try the outpatient NG tube route again, but he knew it would affect me getting a job, and going back to nursing school, and because I had reached my lifetime cap with my health insurance - meaning that they would no longer pay for hospitalizations or medical care that wasn't an imminent emergency - that getting a g-tube was my "best bet for survival." It was really, really, really hard to hear, but I finally accepted that what he was saying was true, and I agreed to the G-tube. (If I hadn't agreed, my parents would have re-assumed medical guardianship and make me get one anyway.)
Part 2 :-)
ReplyDeleteOnce I got the G-tube, I did bolus feeds twice a day, and continuous night feeding for ... well ... at least a year. Then, I stopped doing the continuous night feeds, and just did bolus feeds, but did them 4 times a day. I did that for another 6 months before I really, really tried to start eating food like a 'normal' person again. And, because I had the tube, and because I was so used to, and dependent on, the tube feeds, I found it nearly impossible. So, one day, I just sucked it up, and pulled it out. I knew that there was no way I'd be able to get on with my life, and recover from my eating disorder, as long as I had my g-tube. I definitely should have discussed it with my doctor, especially because I really did horribly after I pulled it out, but I got into an intensive therapy program, and really started to do better. Once I had that crutch gone, I told myself I didn't have a choice, and had to eat.
Anyway, all of the options you are facing did help to stabilize me, and really did help improve my health, but they cannot be a long term answer. It's really hard to not get tube dependent, but they SAVED MY LIFE, and they will SAVE YOURS TOO, you just have to decide what option is best for you.
Hang in there, and keep fighting!! Let me know I can answer any other questions. You can pm me on TF, or email me through FB.