Kris4444 Posted April 26, 2013 Report Share Posted April 26, 2013 I haven't seen the results but I emailed my doctor and he said that it shows "mild delay, consistant with gastroparesis."Kind of what I figured. So now I have GP and severe colonic inertia. I guess the entire GI tract is involved. I wonder what if anything the GI doc will do for this? Quote Link to comment Share on other sites More sharing options...
E Soskis Posted April 26, 2013 Report Share Posted April 26, 2013 Well if he does, let us know. I am about at my wits end with the constant GI dysfunction. The pain and swelling are enough to drive anyone batty - just throw in extreme constipation and alternate it with profuse diarrhea - that is truly the "icing on the cake"...... Quote Link to comment Share on other sites More sharing options...
Kris4444 Posted April 27, 2013 Author Report Share Posted April 27, 2013 Well that doesn't sound good at all. I have extreme bloating as well and weight gain which is uncommon from what I understand. I caught a glimpse of me riding my horse today and I looked like a pregnant woman....not good. If anything comes out of this I hope they at least put me on a strict diet for a while to see if that helps. Quote Link to comment Share on other sites More sharing options...
azmusiclover Posted April 27, 2013 Report Share Posted April 27, 2013 It's a pretty strict diet. Very low fat, low fiber. I can tell when I don't follow it. The bloat stinks and I'm not a fan of the pain and gas either. I am doing better since I'm on it. I take a lot less zofran, which helps cut down the constipation.I hope the GI can find you some relief! Hang in there. Quote Link to comment Share on other sites More sharing options...
laurab Posted April 27, 2013 Report Share Posted April 27, 2013 Hi Kris - weight gain with gastroparesis is not as uncommon as you might think. I am underweight, but I know several people with GP who are overweight, even obese. My understanding from my GI doctor is that because GP throws the body into 'starvation mode' it grabs onto every spare calorie it can and converts it to fat to aid long term survival. I hate the bloating and pain too, never mind the vomiting... Quote Link to comment Share on other sites More sharing options...
Kris4444 Posted April 27, 2013 Author Report Share Posted April 27, 2013 I got the official report in the mail and a letter from my doctor. He said "as you will see the gastric emptying scan shows mild delay. It can be highly variable from one study to another but this is positive whether it is mild or not."He went on to say that there may be a specialist in the area that may be of some help but would not know who to refer me to outside of Mayo clinic. I was just there in January but for ANS testing and nothing more... Quote Link to comment Share on other sites More sharing options...
Psalm 23 Posted April 29, 2013 Report Share Posted April 29, 2013 Hi Kris. I'm sorry you are having to deal with this very frustrating GI problem. I think the key really is sticking to a strict gastroparesis friendly diet which as was mentioned earlier is a low fat, low fiber, small frequent meal diet. For myself I have found a somewhat greater tolerance for slightly more fiber than fat but as is the case with all of us afflicted with this problem one day may better than another day. The gastroparesis websites will provide you with recommended dietary guidelines and some of the forums actually have recipes posted. Motility medications seem not to be recommended unless absolutely necessary as some of them such as reglan have really serious side effects.Lately I have to stop myself from feeling somewhat envious when I see other people eating whatever they want, in whatever amount they want and not have to deal with severe consequences. They have no idea how fortunate they are.Hang in there. At least now you have a diagnosis that explains your symptoms and I know at least for myself that knowledge made me feel empowered and able to be proactive in managing my condition. Janet Quote Link to comment Share on other sites More sharing options...
Kris4444 Posted May 5, 2013 Author Report Share Posted May 5, 2013 Well the GI doctor says that the GP is too mild to treat. I told him the issues I'm having with the high NE levels and severe flushing and vertigo and that I want off the SNRI that he prescribed which is helping with the constipation. He wasn't happy with me and when I tried to explain that YES the mediation does help with the constipation, but the side effects have become so severe that I flush profusely and get terrible vertigo when I exercise (run, ride my horse) to the point where I have had to stop doing the things I love and have gained a tremendous amount of weight.He prescribed Linzess. I started taking it yesterday. We will see what happens. So far nothing but as with any new drug it will take time. Fingers crossed that I find a way to feel better soon. My biggest goal is to lose weight but no matter what I do I just keep getting bigger. Quote Link to comment Share on other sites More sharing options...
diamondcut Posted May 6, 2013 Report Share Posted May 6, 2013 I too have mild GP, the explination was due to the EDS, the instetines can not hold thier pressure and push the food through properly because of the stretchyness of the gut. Thats another reason why we bloat so much too, our guts are to lax and then bloat out!!Have any of you tried Resolor? Quote Link to comment Share on other sites More sharing options...
trice125 Posted May 7, 2013 Report Share Posted May 7, 2013 I also have GP and have weight gain instead of weight loss but I have more nausea and pain with it instead of a lot of vomiting. Quote Link to comment Share on other sites More sharing options...
Kris4444 Posted May 7, 2013 Author Report Share Posted May 7, 2013 I rarely throw up. Quote Link to comment Share on other sites More sharing options...
Susanhs Posted May 7, 2013 Report Share Posted May 7, 2013 Kris4444, I'm so glad that your scan at least showed the GP. Mine did not, but I know when I stick to the diet I do much better, which means no vomiting. I still have bloating and nausea after only a few sips of Glucerna and water. When I first started getting sick, I put on about 7 or 8 lbs, then I rapidly lost 20 lbs. My constipation has been severe, having to use enemas. My GI put me on Linzess in December, it started working about 2 weeks into taking it, but then I started having (sorry for TMI) severe diarrhea and incontinence. Tried every other day and every third day, but same issues after a couple of weeks. If you have problems with the Linzess, ask your doctor about Amitza. So far, I have only been taking 8 mcg, lowest dose, but it has helped some. I'm afraid to increase it, but I noticed constipation is getting worse again so I may try bumping it up to 16. Hope you find some relief. Quote Link to comment Share on other sites More sharing options...
Susanhs Posted May 7, 2013 Report Share Posted May 7, 2013 Psalm 23, I totally can relate to what you were saying about being jealous watching others it. My hubby can eat anything and he feels bad about it. Sometimes when we go to a restaurant, I get emotional realizing I can't eat normal food. I have had to leave the table to go to the restroom to cry my eyeballs out. And then the waiters make you feel bad when you just order mashed potatoes and water. I actually had a waiter offer to buy me a salad to go with my potato soup once. He was really worried that my husband didn't want me to eat. When he saw I only had a few bites of my soup, he just got quiet. Quote Link to comment Share on other sites More sharing options...
Kris4444 Posted May 7, 2013 Author Report Share Posted May 7, 2013 @Susanhs - I'm sorry that things are so bad for you. I was on Amitiza for years, the highest dosage twice a day as well as having to take Miralax 3x's or more a day and still nothing. I didn't have high hopes for Linzess but I'm thrilled that it is working for me.I know what you mean about having animosity against those who can eat. When I am not doing well I can have a real pity party going on. Ugh. Hang in there! Quote Link to comment Share on other sites More sharing options...
Hope Posted May 7, 2013 Report Share Posted May 7, 2013 I hope you find relief from the Linzess. I'm so glad you are posting about this. My husband has suffered for years like this, but his GI doc can never find anything. They have never in 20 years had him go for a Gastric Emptying Scan nor did we know one existed until I read it here. Needless to say he is going to ask his GI for this test! Thank you so much! Quote Link to comment Share on other sites More sharing options...
Kris4444 Posted May 7, 2013 Author Report Share Posted May 7, 2013 Wow Hope! I'm happy that this was brought to your attention. I hope that the scan gives you both some answers and gets him feeling better soon! Let us know how it goes! Quote Link to comment Share on other sites More sharing options...
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