Anyone with Gastroparesis?
Hello
5 months agoI just wanted to see if anyone else here has Gastroparesis? I have had it for 3 years and am having a very difficult time with it. It would help to talk about it with others.
i'm sorry Lacy!, i can't even begin to imagine... Tubes!.....
5 months agomay all go well for you.
thank you :) I'm freaking out....but hopefully there will be a good end result
5 months ago
Hopefully as we build up the userbase you will gradually see some people in the same position as you...I can't begin to understand the difficulti how difficult and life-altering living with diabetes and gastroparesis is but we're here to listen if you ever want to get things off your chest...nice to meet you by the want!!
5 months ago
Thank you...Hopefully ppl will join and talk about it. It really seems to help when ppl are in the same boat as you and you can talk about the struggles to someone who understands! Thanks for the invitation to vent :) I may be doing so quite frequently....especially while im laying in the hospital bed :(
5 months ago
hi lacy
i am new here but i had that wicked problem and it was miserable, i found out in dec 07 and started reglan which helped a little and in feb of 08 i started using a nutitrional cleanse and with in 2 months on this orogram that problem is gone and i no longer take reglan, my primary care doctor did not believe in it butmy diabetic doc gave me the go ahead and lowered my insulin to compensate for the change in my diet
i wish you the best and will keep you in my prayers.
4 months ago
thank you so much Julie! I really appreciate all prayers and thoughts---I feel like i can take all i can get--its all i have really
4 months ago
Hi Lacy
I'm not sure if you can use this program but it is from Isagenix. I take 2 shakes a day and eat 1 meal which it sounds like something you may not be able to do. I just found out about something else and it is alkaline water. I'll give you the web site of my friend Ann and it is www.thewatertruth.com/annbb I bet it would help you. I'm sorry you are having such a hard time now but keep on praying and turning to God I know when I was told by my heart Doc that there was nothing more he could do and I could try and get into a stem cell study, i prayed and prayed and my church prayed and long story short i did get into the study, i believe i got stem cells but will not know for 2 yearsso hang in there.
julie
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4 months ago
will do :) Thanks again Julie
4 months ago
I have gastroparesis. I know how very miserable it can be. It has been one of the most painful complications I have had. I have had problems with my stomach since I was a baby. When I became pregnant my stomach just shut down at 2 weeks of being pregnant. They put me in the hospital and had to feed me through tubes. It kept my baby and I alive thank God. Before I could get out of the hospital the Dr. said I had to at least drink 3 to 4 Ensure a day before he would let me out. That it self was a nightmare. I finally did it and he let me out. I slowly started eating baby food and stuck with my ensure(which I used the carb counting and insulin to do). There is a lot of sugar in it but it was the only thing my stomach would handle. I'm now able to eat some and rely on Ensure and lots of vitamins! I was diagnosed with Celiac disease a few years ago also. You might want to ask your doctor about that if you haven't been checked for it.. It is becoming familiar in diabetics. It's a disease where your body can't handle gluten(which is basically wheat). My body can not digest anything with gluten. I don't know if that has anything to do with my gastroparesis or not but they do cause the same problems. I have tried Reglan for my stomach but it didn't work. I've tried other meds too and they didn't work. Ensure has been the best thing for me. It's kept me alive and out of the hospital. If you need to talk just write me. I have so much more to say but I can't write it all. There is so much! I really, really understand though. Hang in there and pray to God! He will help you through!
4 months ago
TAmmy, tahnk you so much for post---its so helpful hearing form someoneelse's experience wiht this awful disease. ahave ou tried to get disability with this?
4 months ago
I have tried for 11 years and they just keep denying me because of my college and work experience. It doesn't seem to matter what kind of education or job I have when I get sick at any time and when I do it's bad if you know what I mean. I can never seem to control my blood sugars because of it either. I stay fatigue a lot and am weak. The insulin pump has helped a whole lot when I can't get out of bed when I'm to sick. I don't have to worry about getting up and taking a shot all the time. I'm so sorry to hear that yours has gotten so bad. I really know how it feels. I'm glad they do have something to help like your surgery. You'll have to keep in touch with me and let me know how it goes. I really would like to know because one day I may have to have it done. There are no meds that help me with the condition. I finally just quit taking them all because they caused other conditions. Anyway hang in there. I will be praying for you. That is the only thing that has worked for me!
4 months ago
i have gastro, it is very debilitating when you dont know if your food is going to digest or not, and if it does not digest the food turns sour in your stomach making you sick and nauseas with indegestion and vomiting, not to mention what this does to your blood sugar numbers, i hate to be graphic but the diahrea isnt any fun if that occurs and it can occur at any time after a meal, minutes to hours or days, as far as disability , i am on disability but not for gastro, i had a stroke is why i am on disability, and i noticed your feeding tube question on in the newsletter i got tonight, yes i WAS on a feeding tube for a two months following my stroke, not for my gastro, the feeding tube is kind of annoying, the tube gets in the way, its also sort of heavy and causes the inserted area to pull UNLESS you have it taped real good to your skin to keep the weight of the tube from pulling on the hole in your abdomen,, showering is the worst thing about the tube, it becomes very slimy at the inserted hole and you think its going to come out, but trust me it wont come out on its own no matter how much weight or water is applied, the thing has to be PULLED out very physically, and that procedure is painful, but they numb up that area before pulling it out, the bulbous part that is inside the stomach is so large that you feel your stomach move inside when the doc pulls the tube out, its the only way to get it out though is to yank it out, all in all it was not a fun experience, but it was not as bad a my brain surgery from my stroke, that was painful, the feeding tube im guessing you will have permanantly for your gastro, so the only really annoying thing is the itching, it does itch at the hole in the abdomen and it gets red and and inflamed or infected at times also, which makes the itching worse, thats when theres any real pain is when the tube insert area gets red and infected or inflamed, but best of luck to you and stay in touch
phil
4 months ago
sorry i forgot, i also am on reglan, but on certain foods it doesnt help, it seems greasy foods or deep fried foods are worse, i can handle fibers, wheats and proteins, but fats give me problems, like milk for example, and again the greasy deep fried foods i avoid, and im type 1 since 1973 diagnosed at age 8, im 42 now
4 months ago
I don't have it but my husband does. He has had for many years. Makes it hard when he gets hypo because anything we give him takes awhile to get in his system and we have had to call the ambulance. He is getting hooked up on the paradigm continuous glucose monitor next week. He has to squarewave at every meal.
4 months ago
Phil---thank you so much for all your hlep and things for me to expect with this. I got the surgery yesterday and in awful immense pain right now--they are having to give me morphine every thirty mins--which makes me sooo nautious. even more than the gastro paresis does. but i am trying to hang in there. I am so sorry for all of the complications u have had---you truly are a fighter. God bless you, and thank you so much for your help.
Tammy, thank you as well. I am trying to stick to praying, but get very frustrated sometimes with all of this pain. It is truly unbearable right now. I am not sure how long i will have to stay on these feedings either. i will keep everyone updated.
thank you to everyone for all your support and concern. It is wonderful to have ppl here for you.
4 months ago
God bless you Lacy. You are so beautiful! I just know that the angels are by your side and will wrap their arms around you when you need them to. Just ask and they will comfort you. I know this because I do it all the time and it really works! I did have problems with gastro.... when I was younger and I had no idea that it could get that bad. My prayers are with you and your husband and family. You CAN beat this thing! Stay strong and keep us all posted!
3 months ago
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