short bowel syndrome and diabetes, insurance??

I used to work for the Diabetes Assoc here in Western Australia and still have some contacts. I have a friend who's a Diabetes Educator/Nurse. I'll ask her for you and see what she says. What type of diabetes do you have? Type I or II?

hit reply before i said thank you, i would so appreciate it!

yep metformin just did not work as i got dehydrated so easily.. and that had everything speeding through me at breakneck speed.. i knew there were some problems but as i said my doc just does not understand the implications i think.. yet we truly have no money to find a nutritionist who can help me. i have tried almost all the meds and none seem to truly work except to put weight on me. you'd think with short bowel syndrome i'd be a ppetite little thing, but nope i have gained gained and gained some more in the last 8 years. arghhh... i was hoping, but i do so appreciate you finding out even this little bit. in order for me to get medicaid i have to lose a kidney or go blind.. that doesn't seem to appeal to me much..lol.. again thanks...
raine

Hi allin..

i've had this since 1989... from 1976 to 89, i had over 15 major surgeries.  Not real sure the exact length of mine but the surgeon told me beforehand i'd have to be on hyperal the rest of my life probably.  that didn't happen, thank God, but it took me a number of years to get it where i didn't have mega problems.  i now eat what i want in moderation and (knock on wood) have never had a major problem.  other then the first few years i got dehydrated frequently for lack of understanding how the digestive process works.

anyway, if you have any questions feel free to ask...

raine

I am really interested in this thread, even tho I've never been told that I have short bowel syndrome. I have an ileostomy, and have had "several feet" of my small intestine removed in the past due to CD spreading from rectum to colon to small intestine. My surgeon, in another state now, mentioned years ago that if I had to have any more intestine removed, I might have to have hyperal, I think. It's been a long time ago. I have a really hard time maintaining weight, let alone gaining it. I also have a fast metabolism rate.... some of my 1/2 siblings are also very thin and they don't have intestinal issues.

I have tried many, many things. i.e. supplementing meals with Scandishakes, Carnation Instant Breakfast, lots of carbs, etc. I just get tired of not seeing any results. I literally have to just sit on my butt and NOT be active at all to gain any weight. That's just not me. Also, when I am under a lot of stress, I tend to lose weight. (We are in the final stages of building a new home ourselves, and my DH was just diagnosed in March with Lou Gehrig's disease which is usually fatal.) Let's just say, I'lve dropped from my highest weigh EVER in January to a pretty low weight right now. I know that I can gain it.... been there, done that; but it really is a struggle - one that I just don't have time to sit around and do nothing to accomplish that right now.

All of my levels, potassium, vitamins (except B12 - I give biweekly injections) have been normal as I really do try to eat pretty healthy along with the junk food! I am lucky in that respect.

I will check back in on this thread. This subject is one that could be helpful to me I think.

When you are "diagnosed" with short bowel syndrome, does that mean that you are unable to maintain healthy and substantial levels of vitamins, or is it based on how much sm. intestine you have left to absorb nutrients?

Peggy, I am really glad that you can find similarities with short bowel syndrome that you can relate to and maybe find some answers to your questions. I will try my best to answer what I can. Please join in with us in discussion. I find that I have similarities with all sorts of unrelated diseases even things like AIDS and Cancer. Just wanting to make sure I understand all terms that I come across, what does CD stand for? In order to be diagnosed with Short Bowel Syndrome, you need to be lacking a specific amount of your small intestine. I think it has to be at least two thirds of the small intestine that is gone. Not being able to maintain healthy amounts of vitamins and nutrients is a result of having short bowel syndrome. As is dehydration, chronic diarrhea, and more gas because of inflamed intestine and build up of bacteria.
I know what you mean with just getting sick of trying so hard to gain weight. Its really tiring. I get so sick of those shake things, I don't even like sweets all that much so I hate how all of them are so sweet and they are so filling that I find it hard to drink a whole one AND try to eat food. I just plain hate drinking them. I can take as many pills as you need but iI hate having to drink that stuff and it really does not work as well as I would hope.
Is good that your levels are staying stable. That is something I have had huge issues with lately. I go into the hospital for a week, then come out and go back in a week later with my levels just as low as when I started two weeks prior.

Raine,
I constantly eat. Its funny because when I am in the hospital I order like two trays per meal because I need to eat in between meals too. They think I am such a pig im sure! And the funniest part is to see the look on their face when they bring it to me and I am so tiny. When I have guest they always assume I am trying to order food to feed my guest as well, Im like nope its all for me! That must be hard to have short bowel AND be diabetic. What an annoying and strict diet to have to get used to. Where is it you live, is it not in the states? Because I am in California and here its only like 10 bucks for a 1ml vial of B-12 without insurance. They help a lot. My doctor gives me one every time I visit his office for free too. Its very hard for me to be active. Stretching/mild yoga is really all I can do for exercise as of right now.
Thats a good idea. I think I will probably be pretty strict with the low residue diet for awhile to just try to keep some stability. Then slowly let in a food at a time and watch my bodies reaction. I just love food so much and I hate being told what I can and more so cannot eat.

Thanks guys, even just talking about it helps sometimes. Especially since I just got out of the hospital today and was just there the week before last.
Let me know if I can help with any other questions Peggy.

Yes, I am very young and started going through this at age 10. So that was kinda crazy. I really owe a huge part of my life to my mom. I mean obviously I wouldnt have been born without her, so that is not what I mean. But she has sacrificed so much for me. She has always taken care of me and has spent countless nights sleeping sideways in a chair by my bedside in the hospital. Even still at age 20 she has assured me that not only will she continue to be there by my side when she can but she works herself to the bone to try to create financial stability for us one day and to make sure I have someone to pay for the necessities in life that I cannot afford since Disability does not give you enough to live off of. She is just amazing. Im lucky that I have her and other family members that are supporting me. It gets so lonely tho. It feels as though no one could understand even tho they try so hard to.

I understand, I have had a pretty bad month. We cannot afford our rent anymore, my mom's car got repo'd, and my health has been really downhill. I have been in and out of the hospital for the past couple weeks with pain that we cant seem to figure out why I have it. We think its due to just being so skinny and malnurished thinking that my body is probably just in pain because it isnt functioning at normal strength and my organs are a little over worked as well as muscles and stuff being overworked. Its so frustrating tho that I feel I am only adding to the intense stress my family is going through. I have to go live with my grandma and grandpa about an hour away for the next couple months until my moms company gets up and running with more money and things are more stable. Everything will be worked out in the end, I am just so sick of being sick and also everytime I come out of the hospital I have to detox off of the pain meds which is hell.

I just started with TPN. It does help a lot and it usually gets my weight up fairly quickly. I just dont like to be on it for too long so then I get off of it and try to maintain and then after about 6 months of maintaining without it I usually go down hill again. I am looking into this surgery called the STEP procedure. Its practiced out of Boston Childrens hospital and is typically dont on children but I think I could be a good canidate. Especially since my body is pretty similar that that of a child. As close as you get at the age of 20, I am more often than not confused for a child of about 12 to 14.

I am so sorry to hear about your grandma. My grandma means the world to me and I would be devastated if anything ever happened to her. I know your doggie is not as important as gramma but, that too can be so devastating. Im so sorry for both deaths. I will keep you in my thoughts.