short bowel syndrome and diabetes, insurance??

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hisraine
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Date Joined Sep 2008
Total Posts : 10
   Posted 9/12/2008 12:30 PM (GMT -6)   
The reason i ask if you have insurance is perhaps you have actually been able to see someone who knows of our special condition.. Does having short bowel syndrome change the way your body reacts?  i don;t have any insurance and my husband is disabled so our income isn't very large.. i can't afford t he good meds and the 4 dollars ones dehydrate me.  i am trying to  get my diabetes under control with diet and exercise but not doing the best... so looking for someone with this same situation, perhaps you've seen a dr who is familiar with this( also my doc just doesn't know that much(love him dearly though)

Shaz032
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Date Joined Feb 2003
Total Posts : 1245
   Posted 9/12/2008 1:04 PM (GMT -6)   
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?


I have had an ileostomy for 32 years now due to UC.
 
Moderator of the Ostomy Forum
_______________________________________________
 
I'm not a complete idiot - some parts of me are missing!


hisraine
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Date Joined Sep 2008
Total Posts : 10
   Posted 9/12/2008 10:48 PM (GMT -6)   
type 2...

hisraine
New Member


Date Joined Sep 2008
Total Posts : 10
   Posted 9/12/2008 10:50 PM (GMT -6)   
hit reply before i said thank you, i would so appreciate it!

Shaz032
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Date Joined Feb 2003
Total Posts : 1245
   Posted 9/13/2008 8:18 AM (GMT -6)   
Ok, Sophie's reply is as follows:

"Short bowel syndrome impacts on digestion of various nutrients -carbohydrates being one of them, so the rate at which she gets the glucose into her blood could be all over the place. If she is on insulin this could become very difficult trying to match insulin dose with carbohydrate absorption.....an insulin pump would probably be her best scenario but may be too costly. Even if she is on tablets she might not be doing so well with her intake inregards to quantity and timing of carbohydrate. She needs a good dietitian and diabetes educator to work together to help her better match everything.

Oh and the dehydration thing.....is she on metformin? Maybe she's getting diarrhoea as a side effect which she should go back to the GP and discuss other options."


Hope this helps hisraine. The bottom line is to get to an educator and a dietition and they should be able to help you balance things out.

Good luck.
I have had an ileostomy for 32 years now due to UC.
 
Moderator of the Ostomy Forum
_______________________________________________
 
I'm not a complete idiot - some parts of me are missing!


hisraine
New Member


Date Joined Sep 2008
Total Posts : 10
   Posted 9/13/2008 7:32 PM (GMT -6)   
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

Allin
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Date Joined Oct 2008
Total Posts : 17
   Posted 10/2/2008 8:52 PM (GMT -6)   
hey hisraine,
I also have short bowel syndrome however i do not have diabetes. my short bowel syndrome is considered severe since i only have six feet left. I am new to this site and am still trying to figure out where things are posted. I am trying to find other people with short bowel syndrome to be able to talk to. do you know of where there may be other postings for this syndrome? i am glad i found at least one person so far with the same thing as me.

hisraine
New Member


Date Joined Sep 2008
Total Posts : 10
   Posted 10/2/2008 11:35 PM (GMT -6)   
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

Allin
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Date Joined Oct 2008
Total Posts : 17
   Posted 10/4/2008 2:08 AM (GMT -6)   
Oh wow, that is amazing. I finally found someone who has some experience with this. I have been dealing for a good amount of time, but the past couple years have been the start of trying to maintain rather than having to be rushed for surgeries. Its really difficult to figure out what I need to supplement, not to mention keeping up with it all because I lack pretty much everything. I am on a low residue diet. I kinda just started it so I am not sure of the effectiveness yet. It seems to make sense tho. I try to educate myself as much as I can about the way the body works. I am always learning new stuff, but I know a lot for never attending any medical school. haha. What are some things that you find help you or have helped in the past? Do you have to be on many supplements? And do you still have trouble with gaining weight and keeping nutrients and hydration?

Thanks for talking to me!
20 Yrs old. Female.
Short Bowel Syndrome due to many resections. Only 6 ft left.
Can't absorb nutrients, stay hydrated, keep energy.
Currently taking: Calcium, Vit C, Iron, Potassium, Creon, Prevacid, MCT Oil, TPN, Ultrase
Had 15 surgeries. 9 on stomach, others for shunts ect.
Have a Portacath. Had a Colostomy at age 12.


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 10/4/2008 7:58 AM (GMT -6)   
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
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


hisraine
New Member


Date Joined Sep 2008
Total Posts : 10
   Posted 10/4/2008 8:42 AM (GMT -6)   
Hello again....
for me the first couple of years i had to eat constantly to just maintain my weight....... that iis a hard habit to break and now i am very overweight. ( due i am sure to my sedentary lifestyle and Not cutting back.. )with the diabetes (last 3 years)added in i am always starved. i occasionally take sublingual b-12 and if i had insurance i would take shots. Fatigue is definitely one of my biggest problems. hydration can be a problem for me to.. i don't spend a lot of time outside in the summer which limits me on doing something i love(just being out in nature)..
allin, you might try to add new foods in slowly. i think that has been key for me nutritionally wise.
blessings and joy
raine

Allin
New Member


Date Joined Oct 2008
Total Posts : 17
   Posted 10/6/2008 7:00 PM (GMT -6)   
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.
20 Yrs old. Female.
Short Bowel Syndrome due to many resections. Only 6 ft left.
Can't absorb nutrients, stay hydrated, keep energy.
Currently taking: Calcium, Vit C, Iron, Potassium, Creon, Prevacid, MCT Oil, TPN, Ultrase
Had 15 surgeries. 9 on stomach, others for shunts ect.
Have a Portacath. Had a Colostomy at age 12.


hisraine
New Member


Date Joined Sep 2008
Total Posts : 10
   Posted 10/6/2008 9:53 PM (GMT -6)   
wow allin you are young hon...i had my first surgery at 21. they took all of my large intestine then. back in the 70's i guess crohn's disease(I think that is what CD is) was not dx like it is today.. i was sick for almost 4 years before they figured it out, by then my lg intestine was completely diseased. so then they started on my small....:) so you are on TPN? does that help with your nutrition? a lot?
if i don't answer back for awhile, hang on.. i have had a really bad week.. we had to put our dog to sleep first of last week and then my gramma dies on Sunday, so...... haven't felt like being online much...
blessings
raine

Allin
New Member


Date Joined Oct 2008
Total Posts : 17
   Posted 10/7/2008 7:29 PM (GMT -6)   
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.
20 Yrs old. Female.
Short Bowel Syndrome due to many resections. Only 6 ft left.
Can't absorb nutrients, stay hydrated, keep energy.
Currently taking: Calcium, Vit C, Iron, Potassium, Creon, Prevacid, MCT Oil, TPN, Ultrase
Had 15 surgeries. 9 on stomach, others for shunts ect.
Have a Portacath. Had a Colostomy at age 12.


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 10/7/2008 7:58 PM (GMT -6)   

Raine,

My sympathies to you and your family.  I never knew my grandparents past 6 years of age, and I had to have my dog of 13 years put to sleep 2 weeks before my mom passed away of cancer.  I DO relate and losing my dog was like losing a child for me and my DH.  She was our child.  

Allin,

Thank you so much for your response.  CD does mean Crohn's Disease; UC means Ulcerative Colitis.  I had my first surgery while I was in high school, and that was also in the late 70's as well.  Fortunately I was diagnosed right away with CD, but it was so resistent to any meds that I just kept having resections, hoping it would quit spreading.  It didn't quit until I had the rest of my colon an several feet of my small intestine removed, and a perm. ileo done in 1984.  Since then, no problems with the disease itself, but certainly have had my issues with adhesions, osteoporosis, all the issues of high dose/long term steroid treatment when I was young.  Overall, I feel that I am doing very well IF I can keep my weight at 115 or above.  Once I drop below that weight, it seems that it takes forever to get above it... only been above it like two times since the year 2000 ....  both times were during a very sedentary, low stress time in my life!

As far as maintaining weight, some people eat their way through stressful times.  I tend to lose my appetite totally.  Doesn't take much for me Not to  be hungry.  Don't get me wrong, I love food; even love to cook it when I have the time, and love to eat out when we can (no clean up for me!)  And if I am really tired, I tend to opt to sleep or nap over eating.  And I KNOW that I get tired from not enough fuel to burn, it's a vicious cycle.  I try to snack, but when we get busy working on projects at the house, etc, I don't snack and sometimes go periods of times between meals.  And, I KNOW better. 

And I know what you mean about drinking those dreadful shakes, even just a milkshake/ice cream is not one of my favorite desserts.  And I think it is because it has been pushed as a means of gaining weight for so long.  It is rare that I even want ice cream, but when I do, I usually want it in place of a meal --- like a banana split.  (bananas are nutritious, right?!)   I will have to say that I still like Carnation Instant Breakfast - it's great in hot chocolate too, and when mixed in cold milk and frozen for about 1 hr, it really is tasty to drink as a dessert.  It is not as sweet as other 'shakes'.

 

 


Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 

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