stomach and bowel problems

[teresab]

I am wondering if someone who has been diagnosed with stomach nueropathy/gastroparesis can tell me how their symptoms first were like when they started having problems.Also, whether they have any complications. The doctors are telling me this disorder is rare in diabetics who have no other complications.I am a type 1 and have had diabetes for 14 years. Blood sugars are okay I battle highs in the a.m but normal for the rest of teh day. The last two years, I have been battling my Gi system. At first, about 4 times a year, I would get foul burping, vomit then have watery stool all night. Sometimes, I would have accidents. About three months ago, it started about once every two weeks. Last year I had a bowel study, it was normal. The gastric emptying shocked my doc because it showed I empty too fast, yet every two weeks. I throw up food I ate 6 hours before. Does gastroparesis come in cycles---do the symptoms start slowly. I realy can't ger a doc to do too much becauseI haven't lost weight. I don't know if this is my diabetes or something else. I might add I have GERDS, and IBS. My GERDS is so bad I've developed astma from the acid in my airways which has made working out miserable. I feel frustrated and wish I knew what to do. I am missing way too much work.....

[BldAshes]

I'm a 20 year old male, and i also have these problems with the exception of vomiting although in the beginning i did experience some, but after a day or two it stopped, and i have gone to multiple doctors and tried to figure out whats going on with me, but many have differing views, but even as i have this problem i know that i can still have a normal life and aspire to do great things, so for anyone dealing with this problem i want you to know your not alone and to never give up

[jdrf team dm]

EBH is correct, celiac and gastroparesis can have very similar symptoms and it is important to have a correct diagnoses.
dm

[EBH]

Hi-
Has anyone ever suggested that you be tested for Celiac Sprue?
Many of your symptoms sound ver similar.
Call your physician, have a blood test.
If the blood test is positive, thre are additional tests for diagnosis.
It is often misdiagnosed.
Good Luck.

[jdrf team dm]

Dear teresab,
Please review what JDRF-Team-jhg has said under the answer portion of this thread, scroll back and please contact personally. It is a valuable one on one. While the medhelp is such an important forum, sometimes we can also help with more personal information with what jhg is suggesting. Hope to hear from you. This includes Red and tamikens.
Best to all, please take advantage of this.
Take care,
dm

[teresab]

Thank you for the encouraging comments. This past Friday I had my worst episode sick all day and night. I only could get down 1 milk shake. I am feeling better today but my bllod sugars have been out of control all day. I did start back on the nexium but am off the Robinul--I truly believe the sideeffects were worst than the illness. God bless for your kindness.

[JDRF-Team-jhg]

Thank you so much for coming to this forum in search of answers to your frustrating problem.  Those of us who volunteer for this forum are not medical experts, but rather parents of or themselves type 1 diabetics.  I am unable to offer you any additional information or support than what JDRF team member dm has provided.  I would have deferred to her anyway as she is our in house "expert" on the subject of gastroparesis.

Having said this, however, I would like to offer a suggestion on where you can get additional direct support.  The Juvenile Diabetes Research Foundation has a link to diabetes support at their website.  Simply fill out the form explaining your question/situation and you will be matched to a volunteer with experience or knowledge to assist you.  This might better serve you as the assistance/support comes privately through email rather than in an open forum.  The link to that site is:
http://www.jdrf.org/index.cfm?fuseaction=home.viewPage&page_id=C6E5B392-BCDA-CE38-061DD7DA28768850

Should you have any trouble accessing the link when you copy and paste this URL into your browser, simply go to:  www.jdrf.org and click on "life with diabetes" and then on the purple highlighted "one on one support" and that should take you to the request for support form.

Although I am offering you this other avenue, please return to this forum as I'm sure additional comments will be posted to your question.  Thank you again for coming to MedHelp . . . we wish you all the best!

[teresab]

Thank you for your responses. I am so scared and no one understands. I am frustrated with the docs. Its like if you are not dying of malnutrition---it must be okay. I told my doctor last year that I lived on chicken broth last year for three weeks and did'nt lose weight. My husband accused me of trying to starve myself yet the truth was, I was so nauseated I couldn't eat. After three weeks, I lost no weight. I agree with tami---this whole thing is disheartening. I hate to be down on all doctors  as I know those who work hard. Yet, if you have a chronic illness you get blown off. They can't fix the problem and everyone wants a success. If they can't identify the problem, you also get blown off. God, I sound so cynical. I have been to a gi doc. First, he gave me regland---it gave me explosive stools wher I had to wear depends during the day. Now, he has giving me Robinul forte and it is suppose to help the IBS. It appears like it has aggravated the gastric emptying. Here I am at 3 am on the computer because I having symptoms again. I have been reading on teh Nexium and prilosec and I see in rare cases it causes vomiting, watery stool ect. I think I ve had it and I am going to try to get off all medication except insulin.I really hate living like this and worry about my son seeing me ill all the time.God bless

[jdrf team dm]

Dear teresab,

I understand your frustration with gastroparesis. Please don't give up on your meds. I am researching more information to post and trying to speak to a few doctors in my area that specialize with gastroparesis. I know we have alot to learn about this problem and I know it is hard for your son to see you ill, but he wouldn't want you to see you in worse shape. I also have a chronic illness, rheumatoid arthritis. I have learned along, with my son, that information on medications, doctors that specialize on our specific diseases and education and support from family and friends are critical. Education and information are our tools towards control. Please look for more posts. Don't give up.

dm

[jdrf team dm]

Dear tamikens,
As a mom with a son going through this I know your frustration. I hope you read my post and know your not alone. Isoluation can be the worst feeling and not knowing what to do. I've seen first hand how very painful this is. I will be looking to find more info that I can post soon. Please keep in touch also and I will try to post again with further info. It has been very obvious to me that this is a complication that is not getting enough attention. Just a personal observation.
Take Care,
dm

[tamikens]

I also have gastro and neuro of the stomach. I am type 1 Diabetic for 13 years. My symptoms started out as a terrible burning in my stomach for 3 days. I could hardly eat anything. I would lie on the couch and rock in pain. My GI doc did a fasting GI test and found that I still had food in my stomach for 24 hours later. I do not have any vomiting nor do I have watery stools. I am just the opposite. I get constipated. I also have gained weight. I have GERD as well. I would be careful though about your acid because it could cause esophagial problems. I know how you feel. I can sympothize with you. It seems like noone understands what your going through. Alot of people don't realize how stressful Diabetes can be. They look at us and see an overweight person and think she is plain lazy and needs to exercise and loose weight. Somedays I wish I would never wake up. If it wasn't for my children I would never get out of bed.

[jdrf team dm]

Dear teresab,
I am glad you posted again with more information as I was going to respond to your last post. Please know that as a volunteer with a son with diabetes I cannot give medical advise, but share my own personal experierence with you.

My son, 27, was diagnosed with gastroparesis, 2 years ago. It started with non-stop vomiting to the point that he ended up in the hospital for 3-6 days at a time. For him it does come in cycles but I have heard of other cases that it can be an ongoing problem without a break.  I too thought this was a rare complication but have found that up to 20% of people with diabetes can suffer different degrees with this. It took different opinions with his endo, GI doctors from two different hospitals working together to get a correct diagnoses of gastroparesis. He now takes Domperidome available in Canada which has helped the best. Also in the last few months some GI docs are looking at a drug perscribed for irritable bowel syndrome called Zelnorm that are having very favorable results with gastroparesis. My son sees a GI doctor that specializes in this complication and you might start there (if your not already). Please ask them about these drugs and if they might apply to you. As I told red, in the last post, my son did not lose weight but the doctors are certain of his diagnoses of gastroparesis. I'm not sure why there seems to be this difference of opinion. I would recommend getting a definite diagnoses, one way or another. I also recommend the website Gastroparesis and Diabetes. www.niddk.nih.gov. It helped me.

My son also during his episodes experiences burbing and hiccups. I do know that the stomach is unable to move food through your stomach at a normal rate and some of these new meds can help that. The fact that you have ISB should put you in the category to be able to take Zelnorm. Again, please speak to your doctor about this. I also have no problem in seeking a second opinion when I feel it is necessary or a doctor that might be more specialized in this area. It is impossible for all physicians to know all things about every complication or disease. I plan on checking further into this losing weight or gaining weight issue. The norm is probably losing weight however having three of us where loss of weight isn't the problem intriques me. I would invite anyone that has an opinion on this to post a comment.

Please keep us updated on your progress and let us know if we can help further. I know how frustrating this is for you and know that you are not alone. Keep in touch and try to keep your chin up.
Best of Luck to You,
dm