I am 62 years of age with a 162 years of hard life miles on my being. The topic list above is kinda fallow. It does not have a topic for me. It is as the medical industry... no med person knows much of my rare medical condition that is eveer rarer than the rare.
I looks that I will not be around but for a few month or less. My med condition is fasr worsening. If I cannot get to turn around I will be dead shortly. There seems to be no docs, nutritionist, of anykind who knows from acdemics or practice much about my conditon.
I am losing body weight way too fast. I lost 20 some pounds in three months. It is up to .5 pounds every 36 hours now.
I have been on TPN when I first sustained short bowel syndrome in 2000. It was 12 hours a day, 6 days a week. I will not be going back on. It is not how I am to be. Others, maybe yes... me no. I am too athletic natured... to the max.
RICHARD
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Medicare who does it belong too?
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Pain Short bowel syndrome Back pain Hypomotility Gastroparesis
7 replies
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- By NinaBean
- Posted May 8, 2008 at 3:18 pm
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Richard,
Do you happen to have a G-tube by any chance? If you do I might have some idea's for you.
Prayers,
Lesley Diane Marino a/k/a NinaBean
- By richarddw
- Posted May 12, 2008 at 7:15 pm
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Hi Lesley,
I feel bad that it has taken me so long to get back to you. I do you thank you for responding to my post. I must have been way down in the dumps when I wrote that. Jeez!
No, I do not have a G-tube. I only have four feet of my small bowel and none of the large bowel (the colon). No matter how the food gets to the shortened small bowel it will not get absorb efficiently to sustain my life. I have a regimented individualized diet made just for my short bowel syndrome. I also have had growth hormone treatment to grow new finger like ‘fili’ on the inner wall of the small bowel that does the adsorbing of the metabolized nutrients. This allowed me to be TPN (Total Parenteral Nutrition) independent. I knew then that I would need to back on TPN in ten or fifteen years. It has come due in eight or nine years instead. I just do not want to do that again. I am too physical to do that which will fretter me so badly. I am currently getting IV hydration infusion three times a week.
Grateful for folks as with you,
RICHARD
- By NinaBean
- Posted May 13, 2008 at 11:33 am
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Hello Richard,
There is a doctor in Omaha who works with people with short gut and has been able to wean them to a degree off TPN using Blenderized Diet via a G-tube with really good success.
My daughter Nina was born missing most of her esophagus and lost her pyloris valve and 6 cm of intestine. She has dumping syndrome like a lot of short gut people. Nina has been on Blenderized Diet via her G-tube since she was 15 month's young and she's now 9 year's young. I use only raw fruits and vegetable's in her Blenderized Diet. I use a very high speed blender called a Vita-Mix. If you would like to learn more about Nina and what I do for her please feel free to visit our website at: www.BlenderizedDiet.com You might be suprised what you learn.
Blessings,
Lesley Diane Marino a/k/a/ NinaBean
- By Kozush
- Posted May 14, 2008 at 3:15 am
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Richard,
I have pseudo obstruction and gastroparesis (and colonic hypomotility), so I don't know what it's like to have short bowel, however having had these illnesses since I was about 6 years old (am 26 now) I have quite a bit of experience being sick and getting by in life with a chronic illness (I should also mention I have a genetic connective tissue disease which is the cause of my GI ailments). I was on TPN 8 years ago, had my ports removed because of frequent (every 4-6 weeks) battles with sepsis and only in the last week restarted (should have been earlier).
I've been a very active person as well, and even while I was on J tube feeds, I had to get them continuously (24 hours a day) but it didn't keep me from anything. Most people do their TPN overnight anyway, so really it's not keeping you from anything!! My illnesses are what have been keeping me back (pain mostly) and even with that, I was studying to become an opera singer in NYC until I got too sick (pre HPEN) and am most certainly planning on going back! I'm also going to start nannying for a friend's infant. I've also decided to go against the grain and do my TPN during the day (some days I'm even infusing up to 20 hours a day). Being on TPN shouldn't be seen as a failure or a horrible thing, it's a WONDERFUL thing! It's so amazing that this technology exists so people like us, with abnormal GI systems for whatever reason can still get nutrition and LIVE!!! Sure, you have to think things through with trips a little more, yes you have a central line of some sort but what's all that compared to the ability to be nourished and to be alive to say nothing of being functioning members of society?
Regardless of how you end up getting your nutrition, through the G tube or through a central line, PLEASE re think how you're looking at it! Attitude is EVERYTHING, it changes how you look at your life and in turn deal with your life. We all have down days/weeks even months but in the end, it's so much better to keep pushing on in the end. Don't be averse to getting a therapist either, I actually think EVERYONE could benefit from a therapist, but especially people with chronic illness. You'll not only have someone who's a professional to "vent" to (as great as friends and family are for that, it's not fair to them or yourself to make them shoulder all that responsibility all the time) but you'll also learn different techniques for relaxation and learning how to look at things differently that you'd be surprised how often you'll turn to for other reasons.
I hope this helped, do not give up hope, do not give up on life because it means TPN. Feel free to send me a message and we can talk about this more privately if you wish.
Take care, and all my best,
Sarah
- By dreamlady1931
- Posted May 16, 2008 at 5:35 pm
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Richard:
Hi Richard!
It's Mary. I"ll email but thought perhaps my experience would help someone else too
I just read or your worsening situation and i have a couple thoughts:
1. I am super sold on my GI at Mayo Clinic in Rochester, MN. I'd be happy to share infor with you. I know from other Oley members that she has been super with others with SBS. She has 40 patients i believe. She also has a PHD in nutrition.
Other random thought: I know you're atheletic. While I'm not, I was able to teach, run up and down stairs play with my grandson using TPN and a portable pump in a backpack. Any chance you didn't know about portablel pumps?!?
Stay in touch! Good luck, you're good people!
- By bettemarie
- Posted May 18, 2008 at 5:39 pm
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Hi Richard,
When I first went on TPN I hated it! But a friend helped me to see it differently, and gradually I realized how it gave me the ability (energy) to do the things I wanted to do!
I went off TPN for several years, but then asked to go back on. It took me a long time to finally decide it was worth going back on TPN. I took a close look at how my life was, and what it could be like if I was well nourished and had energy. I'm glad I made the tough decision to go back on TPN, because I can do more and I feel better.
Making this decision is hard, and is best done discussing all your options with an experienced TPN doctor/team.
Bette
- By Zacolton
- Posted June 12, 2009 at 3:28 am
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Hey richard,
If tpn can keep you alive go for it. When I'm feeling good I go for a bike ride, hell I was able to go through a senior high school year with conning all the people that I was missing days of school because I was a badass. I even took part on the cross country team. I finished 14th in the city which is a far cry from what I used to be able to do, but it was worth living for. Hell I even go swimming sometimes when I take my tpn needle out once I week. I'm feeling pretty shitty right now and I still managed to go up to the cottage, have a good time, and catch my first ontario walleye (tastiest fresh water fish ever). The girls at school thought I was mysterious too, which worked out in my favour. What I'm trying to say is that I was once a young kid with a lot of athletic potential. I was scholarship material to a good US university on a long distance running scholarship. That whole life is gone now, but life is still worth living, and now I get to travel a different path, a path less travelled. I plan to stay around as long as possible to live it. TPN is not the end of life, even for an athletic person.
As for medicare, I live in Canada, and though the system has many flaws, there is no doubt our socialized system belongs to the people of Canada. I've read about the issues US residents have with healthcare and I have to say I wish I could get you all Canadian citizenships which also comes with almost full medication costs. I've travelled to Kansas city to get diagnosed. Since it was something I absolutely needed, the government paid for the plane trip and the costs of the hospital stay and diagnosis.
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