I have had 3 complete bowel obstructions within the last 5 years. As a result I found out I have Gastroparesis and now Pseudo Obstruction. I have been unable to tolerate solid food since my last obstruction which was 7 months ago. I experience severe nausea/cramping/diarrhea, constipation, and abdominal distention. Doc says severe atrophy set in affecting the intestinal nerves being I have been unable to eat "real food". I have severe body muscle loss due to a drastic weight loss. I am now underweight due to the inability of being able to process solid foods. I have been living on protein shakes/smoothies, applesauce and saltines. Can't tolerate anything else. I have tried so many drugs and none have helped other than Domperidone which is a motility drug from Canada. I just started Liprax, hope it works. I am looking for a new GI doc in the NY/Conn area if anyone knows of any. I am even willing to travel if necessary. I looked into the Gastric Pacemaker but was told the success rate was only 70% which 70% success didn't appeal to me. I need the success rate to be higher. My body keeps fighting me and I don't know where to turn.
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Help me deal with Pseudo Obstruction
- By shamrockmom
- Posted July 26, 2009 at 10:33 am · 8 replies
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Exercise Surgery Gastroparesis Gastric pacemaker Constipation Pain Pacemaker Stress
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- By philsphan09
- Posted July 26, 2009 at 11:30 am
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I'm sorry you;re going through so much and I understand where you're coming from. I feel the same way about the gastric stimulator, I feel the odds aren't good enough. I just got a j tube, and I'm getting a g-tube in Aug. I can't take anything at all by mouth now. Are you still taking the domperidone? Maybe in time it will start working better. I live near Philly so I can't help you with docs. Good luck, I hope you feel better.
michelle
- By gpgirl5
- Posted July 27, 2009 at 6:01 am
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I have a doc for you! At Westchester Medical Center in Valhalla, Brad Dworkin is my gastroenterologist. He is wonderful, and knows a lot about gastroparesis. His son has the disorder. (914) 493-7337.
- By gpgirl5
- Posted July 27, 2009 at 6:08 am
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There is also a motility specialist in NYC named Arnon Lambroza. 950 Park Ave. (212) 517-7570. I dont know him, but saw him on www.digestivedistress.com. Click "Treatments" at the top, then "Find a Doctor".
- By alphabubo
- Posted July 27, 2009 at 2:04 pm
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My heart aches to hear what you are enduring. I had some trouble with pseudo obstruction of the bowel about a year or so after I was diagnosed with gastroparesis. At the time I had been on tube feedings and then had to go on TPN. I hope though that the Domperidone may start to help you more. Perhaps if it is not helping enough, you could discuss this with your doctor to see if any adjustments in the dosage should be made. I can also sympathize with you concerning the great weight and muscle loss. I have been underweight and struggling to gain ever since I was diagnosed. One supplement that has helped some is Benecalorie which has 330 calories in each 1.5 ounce packet. It could be added to the shakes or smoothies that you make for some additional calories. I know that it can be hard to as I often struggle with fatigue, but it is important to keep trying to get some exercise in so as to try and prevent more muscle loss and to prevent you from becoming weaker. I try to take walks or if I am too tired to stand, I often use a little pedaler to exercise my legs while sitting in a chair or on the couch. I also try to get some stretches in. It is hard to try and find the proper balance between everything, but you have the support here of very many, including me. I hope that you may soon find a way to help build up your weight, strength, and health. I will be sure to keep you in my prayers and thoughts. Many, many hugs.
- By GPAllie
- Posted July 27, 2009 at 3:39 pm
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Shamrockmom,
I posted a reply to another one of your posts.
There's a GI Motility Clinic at the Yale School of Medicine in New Haven. I am going there and happy with the treatment. You can find info by googling. If you have any trouble, let me know, I can add a link.
So far, I've had a visit where the doctor reversed the GP diagnosis. And, I had the small camera endoscopy (pill camera). So far, my symptoms are undiagnosed/unexplained. My "regular" GI had told me I was severely ill and had severe GP. The motility specialist said my emptying is 7% off due to migraine pain medicine. I feel a lot better just because of the stress I was under after the GP diagnosis -- I was no prepared for it. It all started with a bout of constipation. I figured, maybe IBS; GP blew me away.
I still have nausea and am losing weight. I'm eating more than I was a couple weeks ago. I'm having ups and downs. The doctor recommended tricyclic antidepressants for unexplained abdominal pain, but I decided I need a reason before taking any more Rx. I'm trying some natural alternatives. Been drinking apple cider vinegar diluted in water and trying other things I read about at earthclinic.com
Good luck and hope that the clinic info can help you.
take care.
- By shamrockmom
- Posted July 27, 2009 at 6:43 pm
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Thank you for all your responses. I wrote down some of the doctor names. I have been on Domperidone for 5 years now. Right now my G.I. doc is adding Liprax. Doc is hoping it will help with the nausea and spasms. I am now looking for a nutritionist hoping maybe they can come up with foods I may be able to tolerate.
- By GPAllie
- Posted July 28, 2009 at 3:49 pm
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Good luck with the nutritionist search. When I asked for dietary help, my GI just gave me a standard blank stare "i'll ask my colleagues" answer but never gave me a referral. She's not my doctor any longer. For that, I am thankful.
Everyone's eating ability and food tolerance is so different....I just started to wonder if a nutritionist or dietitian would be able to help.
I hope u find what you are looking for.
- By shamrockmom
- Posted August 9, 2009 at 6:29 pm
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Saw a Registered Dietician over a week ago. I knew more about GP than she did. I told her I have not been able to eat in over 7 months, that I am living on protein shakes/smoothies, saltines and applesauce. I told her when I try to experiment with a little bit of solid food, the nausea and cramping is so unbearable. I have been keeping a food diary to chart my food/symptoms to prove my intake. Her response was "maybe my symptoms are because my soluable fiber intake is not enough". I asked if she was kidding. She said she was serious. Her theory is you need to balance your soluable/ insoluable fiber intake equally in order to properly digest. What part of being on a liquid diet did she not understand. The balance of the fibers would be ok if I were able to tolerate solid foods. I don't want to stay on liquids I want solids. She didn't even come up with a menu plan of low residue foods to slowly introduce. She said she would e-mail a menu plan but as of now she has sent nothing. The scary part is that she works in a hospital working with cardiac and bowel surgery patients.
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