Good morning everyone, this is probably going to be a long post!
As you all know, I had my appointments on Friday. I really didn't like the gi doc my surgeon referred me to that much. He was not as personable and didn't seem as caring as my surgeon. Plus, he did not even have the results from my gastric empyting study. He had some of my records, but not the gastric test, which was important. I had to tell him the results (The nurse at my surgeon's office that afternoon said she didn't understand why because she sent him everything!). Anyways, yes, I do have gastroparesis. My delayed stomach empyting is so severe that it is truly affecting my life. He didn't really explain that much to me, and his current suggestions were putting tubes in me to bypass my stomach to get nutrients in me at the current moment. Basically, that is how the visit went, and I paid $95 for that visit because I decided I could not continue my current COBRA insurance because I am running out of money.
My afternoon visit with my surgeon went somewhat better, and he is so much easier to talk to. Plus, the surgeon is not even charging me anymore because he wants to see me get better! He sits there right by me, and keeps things in a positive outlook. I explained about my bowel problems, and he still doesn't quite understand my gas and constipation problems. The past couple weeks I have been able to move the bowels a little bit better with the milk of magnesia. I just try to relax with the heating pad, or I relax in the bath tub for awhile. A few times it has came out easy; other times I struggle just like my trapped gas. Plus, it depends on what I have ate or drink, and the drugs I have taken to help my stomach. So, in the meantime, he doesn't think an ileo will solve all my problems. Everybody is concerned about my stomach.
Remember I have always complained about my left abdomen hurting, the gurgles, and trapped gas. I do not know a lot about gastroparesis, but he explained that yes, I have gas that struggles to come out from my rectum; however, when my stomach gets so big too that the stomach can distend so much in your body because it empties so slow, gas there too; double whammy! My report said the half-time was 509 minutes; extremely, severly abnormal! I feel like I have this dull pain there a lot even when I haven't ate for hours, or I could just a small little thing, and my left abdomen can bloat! A normal meal, I get very bloated and sick and can start burping excessively; I get nauseous!
I know all the constipation problems, all the drugs, and the surgeries I have had has made my stomach problems worse! I really am afraid to eat and drink a lot of days now. My diet it becoming so limited, which I don't know, maybe that is why I am still having a little problems with pooping still, too! I think that is why everyone wants my stomach to get a little straightened out because we are not sure an ileo will make me 100% better.
Also, I told the surgeon I feel like I am so young that I really do not want tubes in me, and all I have ever wanted all my life is to be able to eat, poop, and pass gas normally! I have struggled with stomach, gas, bloating, and constipation problems all my life! Now, the surgeries, etc. has my made my stomach worse. What makes me sad is that there is no cure for gastroparesis, only medicine to help speed up the stomach and changes in diet. I have tried reglan in the past, but it doesn't help completely. Also, I can't take reglan; I feel so anxious, jittery, and weird. That drug has a lot of side effects. Currently, the surgeon called in a prescription for erythromycin to take 4 times a day. It is an antibiotic that is suppose to help speed up the stomach and bowels; one side effect is diarrhea. I have to call the doctor's office tomorrow though about that. He thought the drug wouldn't cost that much. I went to Wal-mart yesterday when I got back into town; they didn't have anything, but later that night I got a call from the pharmacy saying it would be 240 something dollars without insurance. I can't afford that right now! Ahhh! 
I am happy though because the surgeon's office is going to get me on temporary disability till I can get my stomach and bowels issues straightened out, so I can get my medical card. I tried to apply a month ago, but I got denied. I appealed the decision, but the only way you can get a medical card is if you are disabled, over 65, pregnant, or have children. All the doctors agree that I am just too weak right now, and that I need this till I can get better! So, unless the doctor does something, or there is some other program; I can't get my medicine till I get my medical card.
I do agree with the surgeon; I have done some research in the past about gastroparesis, and my condition is so severe that I think it would help to see a top notch gi doctor. I asked my one friend last night about a gi doctor her sister went to in Chicago that she really liked and is very knowledge (I have got my best advice from referrals from friends and family)! I think when I call the surgeon's office tomorrow I am going to mention that (currenly I have another follow-up with him on Oct. 31st-halloween). Also, I read about in extreme cases that they are trying to come out with different treatments for severe cases of gastroparesis. One is a gastric pacemaker that put on your stomach, it is not a cure, but it is suppose to help with nausea, and so you can eat much better than what I do now! Also, a gastroduodenostomy where they create a new opening between the stomach and duodenum, so food moves freely into the small intestine. So, I think trying to find a good gi doc, and getting a consultation is a good idea to discuss my stomach and bowel issues. One thing we can agree one, my small bowels works fine, which I know it does because I feel it jumbling around in there a lot and get gas pains when I can get it out of my rectum. I can feel it trying to go in hyper-drive!
So, my current wish is hoping that this new medicine will help me somewhat; it is not a cure, but in the meantime, I would take 25% better! Another goal, get my medical card issued. Once I get that, get hopefully that appt. with a good gi doc, and find a good therapist. I really need to find someone to talk to once a week to let out my frustrations. My body is not only getting weak and tired, but emotionally, too! Everyone, just pray for me, and hope things will get straightened out in the next 6 months while I get my temp. disabilty. My body is getting weaker each day, and I am getting to the point where all I want to do is sleep a lot, so I don't have to worry about being in pain! I am 27, and still have the rest of my life to live. I just want to eat, poop, and pass gas normally. If it came down to do a little stomach surgery now, (god, I am so sick of hospitals!), I would do it because I still can't continue my life like this; I don't want to die! I would def. do my research about it though, too; Rosemary, I would need your help with that, since you are good at that now! Do any of you know other people on this forum that have gastroparesis? I need to find a support group for that! I love you all very much! Everything I have been through is just all so overwhelming!!!