I am really enjoying being a part of the AGMD GI Motility support group. I went to see my surgeon yesterday who did my surgery six months ago for SMA syndrome. He and I tossed around a couple of ideas on how to help my hugely dilated, partially working stomach. My surgery was a success at fixing the small bowel obstruction, but unfortunately, after nearly 20 years of gastroparesis, the upper portion of my stomach is so floppy and stretched out, that it will never function again. There is a possible procedure called a gastric sleeve that may help my overstretched stomach. The problem, however, is that it is a bariatric procedure that has never been done on a patient suffering from gastroparesis. The surgeon was not willing to do this procedure on me, because of its unknown success rate for patients like myself. This was extremely frustrating to hear, because eating for me is HORRIBLE! I am, however, slightly conflicted, because I am one of the lucky ones who does not rely on a feeding tube for nutrition. As we all know dealing with gastroparesis is a lifelong journey both physically, and emotionally. It it easy to give up and feel sorry for yourself, but this I have found is just wasted energy. Having a disease like this that involves food is the worst. I try everyday to be positive for my husband and my three children, but It is a daily struggle. I am glad I can share my thoughts with all of you. I am asking this great community for help in possibly finding a surgeon who truly understands the devastating disease of gastriparesis. Any help or advice from y,all would be great. After 20 years I am sort of running out of ideas to help me conquer this disease.
Thanks for your help.
gijen
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frustrating DR. visit
- By gijen
- Posted October 8, 2009 at 8:53 pm · 10 replies
- In Coping with chronic illness
- Shared with the public
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10 replies
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- By Lauren2006
- Posted October 8, 2009 at 9:16 pm
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Hi Jen. I have something that popped in my head but I also want to say that I know you have been thru a lot, but I LOVE your picture.
I don't know if you have heard of this new book on GP, its written my an RN who suffered from GP (patricia Rosati). Its called "Gastroparesis, my personal journey". ALthough I did not read it myself, from what I heard, I believe she had whats called a vertical sleeve gastretomy, and last I heard, was doing well. But I think I have also read somewhere that that surgery IS done on GP, with an 86% success rate.
Do more research on it, get a second opinion, and see if you want to buy or get the book from your library (my local library did not have it though). Good luck and let me know what happens.
Love,
Lauren
- By plushy
- Posted October 9, 2009 at 9:08 am
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I also do not take only liquids i can still eat small amounts of certain kinds of foods but i would love to know more about the sleeve thing.. I would also get a second opinion just to see what they would say, any hope for us would be worth looking into, let us know how it goes
take care
marie
- By gijen
- Posted October 9, 2009 at 11:37 am
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Lauren-
Thanks for your reply. Yes, I have already read her book on gastroparesis. It was great. That is where I got the idea that surgery may be possible. I will let you know what happens.
gijen
- By gijen
- Posted October 9, 2009 at 11:39 am
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Marie-
Thanks for your reply. I will definitely be getting a second opinion.
gijen
- By mcmarie
- Posted October 12, 2009 at 4:10 pm
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gijen, you are awesome. Your strength is beautiful and keeping that positive attitude is all you can do now. It's a battle for all of us and having friends on this site is one of the saving graces I have.
I would get a second opinion too. I had a fundoplication about 10 years ago...and while my doc now says I shouldn't have, the doctor who performed the manometry test said I should have.
so many conflicting reports and info. Take your time, find the right answer and don't let these doctors bully you into anything you either don't need or keep you from getting the procedures you do need.
Hang in there, Doll!
- By gijen
- Posted October 12, 2009 at 4:36 pm
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Thanks for your reply. I will definitely get a second opinion.
gijen
- By AnneR
- Posted October 12, 2009 at 9:26 pm
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gijen
My daughter also has been operated on for SMA in January. They also told her that her stomach was stretched out and not working properly from having the condition so long. They said that the SMA was caused by a motility condition that they never diagnosed. They never mentioned anything about a sleeve, but we are trying a new motility doc. at Temple in Phila. next month. She still has constant vomiting due to this. What symptoms do you have with this? I know how difficult this must be for you, especially trying to stay strong with three children. This site is so helpful, I have learned so much.
AnnR
- By gijen
- Posted October 14, 2009 at 7:27 pm
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AnnR-
That is very interesting for me to hear about your daughter. I am so sorry that she is suffering so much. I am still having a really hard time eating. I find that because my stomach is so large, I can only eat very small meals. This is hard to do, because my stomach actually can hold a ton of food. When I over eat, I vomit. I also try very hard not to eat solid food past 5 in the evening. This has helped a lot. I also really try not to eat a lot of solids. I find soft foods like yogurt, and liquids go down much easier. I still have to take my tramadol for pain, and my zofran 8 mg. for nausea. These drugs have allowed me to eat again and to gain some weight. I will keep you posted on my progress. I have heard the docs. at Temple are really good. Good luck, and please keep me informed.
gijen
- By debbie2027
- Posted October 15, 2009 at 2:18 pm
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As a mother with GP I understand! And your story touched my heart .... Good luck to you and you will be in my prayers!
I have only been dealing with GP for 6-8 months and can't imagine the 20 yrs of the journey you have traveled! Stay strong and best wishes :)
- By AnneR
- Posted October 17, 2009 at 3:28 pm
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gijen
I know that you mentioned that you still have a hard time eating. Question....Do you still swell and vomit daily? I thought that after my daughter (who is 18) had the surgery this would be all better. She still swells, but not as bad; she still is vomiting several times a day. She could eat yogurt, and within a period of time it just keeps coming back up in her mouth. I know that her stomach is stretched, and that was from being sick for 4 years until they found it. You mentioned you had this for 20 years. this has to be very frustrating. I know what you mean by your stomach stretched, she is always hungry and has such a hard time trying not to eat that she gives in and eats, which does make things worse. I will have to check more into the sleeve, if that could be helpful.
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