Generalized motility disorder

Hi,
I found taking omeprazole at least 30 minutes before eating made it work better. I'm permanently on laxatives,13 years worth but they are not the total answer. I use nuts, canned peaches, prunes and anything else I find can that helps. Dysautonomia is the cause of my digestive problems with slow motility. Mixed in with IBS and the inability to eat or drink much before the stomach kicks off. I exist on one small meal per day with very little neutritional value to keep myself reasonable comfortable, chased down with at least 6 cups of black tea per day to keep the fluid levels up and my kidneys functioning. Not wonderful but I do what I have to within my constraints.
Cheers

I’ve been doing pretty well lately, which is a surprise. I never thought it would happen. I can’t explain it, i will add that while I normally eat a very tight, nutritious diet, occasionally I have fried fish fillet. It make me go,

I recently got diagnosed with generalized motility disorder.My reflux is controlled by Omeprazole.I also have moderate gastroparesis and constipation and rectocele.For 5 weeks Motegrity was working well for the constipation,until I developed rectal pressure almost daily and constipation is worse.The GI doctor ordered anorectal manometry and MR defecography,pelvic floor therapy and to take Miralax everyday which seems to work well so far.It sucks having this problem and having my birthday tomorrow.Has anybody had these tests and taking Miralax long term? I am a nurse and going back to work soon,it is so hard to help others if you cannot help yourself.I am hoping for some improvment and a better quality of life.It is so hard that I cannot eat any of the food that I culturally grew up with due to this gastroparesis.

Hi @truthfinder, and happy birthday! I am so glad you posted. I can feel your feelings of frustration and loss in your words. I also read about the progress you are making, improving your day-to-day. You can do this! A lot of what you say describe just how much you are doing to help yourself, and that makes you super qualified to help others.

I headed to pelvic floor PT after an anorectal manometry confirmed pelvic floor dysfunction, particularly coordination. Constipation is no fun. The worst pain I had was what I described as a feeling of a rock sitting on my tailbone. I am in your long-term Mirilax club!

How long have you been dealing with motility problems? What type of food are eating?

I’ve been dealing with my motility problems for about 3 months now,I’ve been eating eggs,bread,some fruit,chicken,fish and noodles,it’s ok..just different from what I used to eat.Thank you for your kind words.I’m also doing manometry tomorrow and some pelvic therapy soon..may both our journeys lead us to feeling better..

I take 290mg of Linzess and 2 senekot-S tablets every morning to keep my bowels moving. I take metoclopramide and pantoprazole to help with my reflux and delayed gastric emptying. I’ve had great success with it. I had gastroparesis before that was bad enough that I had a G-J tube to empty my stomach of acid and to put tube feeding into my jejunum. Thank goodness my gastroparesis is much better, but I’m left with delayed gastric emptying and delayed small and large intestinal motility. I wish you all the best!

@truthfinder, I am checking in to find out how your manometry testing went.

How are you feeling? What is next?

Thank you for checking,the manometry test was not as bad as I expected in terms of discomfort,however my doctor said the results showed I did not pass so she recommends biofeedback sessions.I will start that next month along with my pelvic floor therapy, I hope it helps both the constipation and the rectocele.I am down to 1/2 capful of Miralax everyday,it is helping me go however I feel so bloated lately,feels pressure in my upper and lower abdomen,do you feel like this with your Miralax sometimes? I am going back to work on Wed after 2 1/2 months,I hope I can juggle my nursing and mom duties along with my therapy and dr’s appts.I have a love/hate relationship with food now with the gastroparesis..”eat now..suffer later”

@truthfinder, I am glad you are making progress!

I have experienced bloating and pressure. I take senna alternating with MiraLAX, I think it’s the senna that tames it down after a few days. I also relate to your concerns about how much you are trying to manage. For whatever reason, part of being able to function has required a pretty strict diet and eating consistently throughout the day. I know I had to stay ahead with having food ready to eat that I didn’t have to think about. I literally ate the same thing every day. This may be something to consider to help minimize what you have to focus on as you go back to work and start pelvic floor therapy.

I am interested to learn how your treatment is going. Please come back and update.

Do you have friends or family that can help you?

Yes,I am blessed with a lot of friends and family that can help me.I am just always used to being in the caregiver role not the one needing help, that is new for me.Will keep you posted on my progress with therapy.I appreciate your concern.