Need to vent... cant vent to my family.....

So...I have sever gastroparesis and at this point I've lost hope in cureing it...I think my nerve is distroyed. I'm sick all the freakin time ... I run out of breath in a heartbeat... vomiting....weightloss... all that good stuff. I really hate that I have no idea what is truely in store for me... Like how long can I live with this? Everything I see on-line tells me that I will most likly die from this.... Most of us die from dehydration, malnutrian...blood sugar issues... and guess what..... you can not get a transplant! So when my stomach dies.....what then???? When it doesnt work anymore at all what happens??? Do I just die??? Howlong do I have till that happens??? 5 mnths?, 5 yrs? how long CAN I live like this???

My family and friends are all freaked out or just ignoring that it is happening all together... most think I'm gonna die and then others like my brother is like.... if you just work out and eat right you'll be fine....LMAO!!!! For REAL???? YA THINK???? S***!!!! I'm a diabetic...I've been doing that my whole life!!!!

I have two small children a 10 yr old and a 12 yr old... my 12 yr old overheard my Mom talking to a friend and now she thinks she's gonna loose her Mom... She broke down the other night and asked me..."Mommy...are you gonna die"? OMG!!!! Not a conversation that I was ready to have. I dont know if andd when I'm gonna die..... I have no idea how long God id going to bless me to be here...I'm hopeing that I've stopped any progression of this but who's to say....The Dr.'s dont seem to know much about this and when I look on the internet I find ALL the same info....everything that we have already tried.... I'm losseing hope. I hate that people treat me like I'm dieing....It scares me... and it is soooo hard to stay strong for everyone else. It is so hard to hear the pain in there voices...to hear them cry.... it just sucks! But...I'll be okay... I have no other choice. I WANT TO LIVE, I want to see my babies grow up and have husbands and families of there own...

Views: 14

Comment by Bradford on July 5, 2010 at 7:50am
Brandi I can only imagine the struggles you have to face with your gastroparesis. I unfortunately don't have anything to offer other than an open ear for you to vent to here on TuD! It's great to see that you are still so positive and passionate about life and about seeing your daughters grow up and be successful as well. Know that we are all here for you, rooting you on!!
Comment by Bug74 on July 5, 2010 at 8:24am
Brandi,
There is hope. I don't know your entire situation, but I do know mine and I was able to reverse it. I had diarrhea of over 25 years. (That's embarrasing to even write!) It was constant, day in and day out. It was a daily struggle and at times would hit even harder. There were times it was so severe I would loose 7 lbs overnight. The stomach wouldn't empty.......the whole nine yards. I tried EVERYTHING. I was misdiagnosed several times with various food allergies, etc. It took several years of better control for the nerves to start to repair. BUT it wasn't perfect control......just much better. And yes, this was complicated because gastro itself messes with all attempts at better control. I went on the pump and became a master at the dual wave bolus feature.

The improvements came slow. My stomach started getting better first. It was off and on for some time. Then the diarrhea stopped and I can't tell you how shocked I was at this. I, like you, thought I would have it FOREVER. I was dx at age 14 (1974) and the diarrhea started my senior year in HS. My control wasn't terrible as a kid.......and we didn't think it was bad enough to warrant such an extreme complication. But we didn't have the tools to measure it in those days. I never skipped shots or went into DKA.......it was a different time.

My husband and I married in 1988 and all we hoped for was a good 10 years. We will soon be married 22 years. I have had no problems at all for the past seven plus years. It is awesome.

Here is one thing I wish I had known back then. Chronic, constant dehydration can damage the kidneys. I have a lower kidney function as a result of all this. The kidneys have functioned at the same level for years so at least the problem hasn't progressed. Do everything you can to stay hydrated!!!!

Hang in there. I know how you feel. This was my situation......and everyone's D is different.
Comment by Gerri on July 5, 2010 at 9:13am
I have gastroparesis, though not as severe as yours. Yet another thing to deal with on top of diabetes that makes BG even harder to control. I tried liquid meals, but it didn't make any difference. So frustrating how little is known about this. I keep searching for new info also.

I've been considering a CGM because I get so little sleep waiting for BG spike 6-7 hours after dinner.
Comment by Doris D on July 5, 2010 at 9:42am
I've had gasteroparasis for about 10 years or longer now. The cramps, the vomiting, oh gosh the whole thing gets so bad sometimes. Looks like Brandi has said about all I was going to say here but I'm like her the pump really helped me out with it. It just takes awhile for you to digest things then when it happens IT HAPPENS! I go to a Gasterointologist for all my issues. See if you can find one around where you live it helps A LOT!!
Comment by Brandi Satterlund on July 5, 2010 at 6:05pm
Oh my word...I can not tell you how much all of these comments mean to me... I feel SO alone most days. Even if the outlook for this Gastro stuff isnt good it is comforting to know that others know what I'm going threw...I'm not alone and I will live...Thank you ALL soooo much!!!!! Bless you! Brandi
Comment by Manny Hernandez on July 5, 2010 at 8:25pm
I see you have made your way to the GP group here. I was going to recommend that you join it. When I first became familiarized with GP (through Margaret, a member from the Bay Area who runs a support group for people with type 1 and GP) I was amazed at the mountain of a challenge it must be to live with both conditions.
Comment by Mrs Apple on July 5, 2010 at 8:43pm
Brandi your comment on how long God is going to bless you to be here struck a cord. I have been questioning God lately ! Why is he doing this to me first diabetes now I might have RA. I also tell myself how long can i live with all this painn No you are not alone but I can see how you can feel like you can't talk to your family, I can't either. They don't know how to handle what is happening to me. How can they when I don't even know !!!
Comment by Holger Schmeken on July 6, 2010 at 2:57am
You fear for your life and this is the reason for me to digg a little deeper. Here is a little excerpt I found:

Symptoms of gastroparesis include nausea and vomiting, early satiety, post-prandial fullness, bloating and abdominal pain, but it is also frequently be asymptomatic. Patients with difficult metabolic control should be considered to have a disordered gastric emptying. Nuclear scintigraphy is the gold standard for quantifying delayed gastric emptying, but noninvasive methods, such as 13C-octanoic acid breath tests, exhibit a highly significant positive correlation to scintigraphy. The main goal of treatment is to minimize the symptoms and accelerate gastric emptying. The basic measures for achieving this are improved glucose control and low fat/low fibre diets that are easy to digest. The prokinetic agents metoclopramide, domperidone and erythromycin are successful in controlling symptoms in the majority of patients with gastroparesis due to diabetes. Patients with persistent symptoms or intermittent but severe symptoms may require surgical techniques such as the gastrostomy and jejunostomy. The significance of gastric pacing devices on gastric emptying and specific symptom controls have to be elucidated in further studies.

What agents have you tried so far?
Has your doctor spoken about surgical solutions?
Has coeliac been ruled out (have you tried gluten-free diet)?

Just feed for thought. I hope you will get better soon.

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