Welcome to the gastroenterology community! The dilated parts of your intestine are pretty consistent with a motility disorder and constipation. Has you GI doctor told you what to do about this?
Thank you. Lately no one has said what to do. I am on several meds, but lately they dont seem to be working. I am in so much pain all the time unless i starve myself and drink nothing otherwise i pay for anything going into my mouth. Do you see motility doctors?
Yes I see a motility doctor at Stanford. I have motility problems in my stomach and in my large intestines (but not in my small intestines). What meds are you taking/have taken?
I have motility disorder in my hole gi tract mouth to bottom. I take dicyclomine, octeritide injection, iimiprramine 25 mg plus like carafat cause I have bile reflex, plus several more meds. I do see motility doctor as well, they have been very helpful they are in cali as well, but i live in oregon so everything is out of pocket so i can not see them as much as they would like for me too. All the doctors here say i beyond them that i really need to be seeing motility doctors. So stanford I have heard so many good things about them.What are you taken? does it help?
My medications for my GI problems are are Prevacid, Amitiza, Neurontin, Domperidone, Docusate, Milk of Magnesia, and Culturelle. They all help somewhat but I still get constipated even though my stools are liquid (medication induced). I also still have bad problems from gastroparesis (motility disorder of the stomach) and I'm still working on getting that under control.
So the Domeridone do you have to go thru Canada? I use to be on it then my local doctors did not want to prescribe it anymore. I take the generic of neurontin but havent heard of some of your meds. So is there a team of doctors at stanford that deal with motility? I see a doctor in San Fran. So did they do all the motility test like antrodundeneal, manometry, all those type? One thing I am curious about is how do they check if you main vein to your organs is not effected or damaged? I went thru a subtotal gastrectomy with reon y for the gastroparesis and the reflex both acid and non acid so they figured this would help and now it is so much worse and get pretty bad. I hope you feel better. if you dont mind me asking how old are you? you have children? do they have issues cause i do.
thank you for your help...no body understands what i go thru to have someone who kinda understands is very nice.
No, I'm on a trial for the FDA through my doctor at Stanford so I can get it legally in the US. I'm not sure if there's a team or not. I saw a motility doctor in San Francisco that I didn't like and then I went to see my current doctor at Stanford who I really like. Her name is Dr. Nguyen. Motility tests I've had are gastric emptying scan, rectal manometry, and EGD and small bowel manometry and I've had many other intestinal testing for not for motility specifically. I don't know how they check if the main vein to your organs is okay. I haven't had any surgery done for any of my problems. I also have POTS which is an autonomic nervous system problem. I am 18 years old so I don't have any children. It's nice to talk to someone that "gets it". A lot of people don't understand a lot of things. For example, no one believes me when I say that my bowel movements are pure liquid but I still get constipated.
oh wow, your 18 so this has been a problem for awhile. Yeah I totally understand it,I get the same thing.People do not understand at all. I live in Oregon and the doctors here if I call or see them they treat e like i am wasting their time. They are not caring its all about a pay check when i walk in that door. They do not listen to me at all. How are your familly with this? I am 38 I got 3 boys ages 21, 20, and 17 which my 20 yr old has the same issues, my youngest has Crohn's disease.
You want to email me on my direct email?
What doctor did you see in San Francisco?was it at California Pacific? I have gone thru all those test as well, not fun. As for surgeries, delay delay as long as you can. I think that has helped make things worse.
So were do you live? do you have people who support you with illnesses? me and my son are looking in areas to move closer to doctors. So what does POTS do? So can this be part of your motility?
You need to talk or anything please dont hesitate to contact me.
We can communicate over MedHelp private messages. I'll send you a message to get that started.