Anyone else diagnosed also with gastric paralysis

I have been recently diagnosed with gastric paralysis. Just curios if this could have developed because I do have a severe case of PBC/AIH overlap. Diagnosed with PBC one week and the next week was told stage 4 and one month later was told AIH also. Lol on a good note my phosphates have finally made down to the two hundreds from the eight hundreds when all this started a year ago. My husband wants me to get a second opinion due to the fact that I am now up to 27 pills a day. Nothing seems to work on the nausea and I'm not sure what to do. I have been released from work on FMLA due to severe fatigue and being sick all day. The hubby doesn't understand the fatigue no matter how much I try to explain it so that's another issue that's draining. Any suggestions on anything would be appreciated. Just need to tell some people that would understand. There is not as much known or understood about this disease in the USA as there is in the UK.

15 Replies

  • Hi, breekins! I agree that there seems to be less understood here in the USA about this disease. The fatigue seems to be the biggest problem for many of us and it is definitely hard to explain to others who have unlimited energy to do whatever they wish. The nausea is hard to deal with. I eat yogurt and a light snack at night so I have food going in with my nightly pills. This helps some with the morning nausea. In addition, I take Zyrtec in the morning and it helps slow down the nausea as well. When these don't do it, I sip cold ginger ale and use a cold washcloth around my neck (front or back as needed). That's an old nurse's trick I learned from my mom. I had decided months before the diagnosis that my stomach had turned against me!

    I was lucky. My family practice doc jumped right on it when my liver enzymes went out of range the first time during a regular checkup monitoring thyroid problems. He ordered the antibodies tests to rule out possibilities as well as an ultrasound. The tech diagnosed it as fatty liver disease, but the anti-mitochondrial antibodies were found in the blood work. A biopsy in May confirmed the PBC as causing the problems. My alkaline phosphatase went as high as 188 in July, but the Aug blood work shows it is beginning to drop.

    I am not familiar with gastric paralysis but it doesn't sound good. I hope some of the tricks I am using will be helpful to you as well. Between the meds and the supplements I use to support my body, I take 29 pills each day as well, spread out across five times: morning, breakfast, lunch, dinner, and nighttime. I also have to rest every day in order to do my work. Since I work from home in my own business, it is easier for me in some respects, but also hard to remember since my normal schedule is to go all out from 9 am to 8 pm each day. Life has changed; now I must catch up with the new reality and match my pace to it. Take care!

  • Thank you for the suggestions. I will definitely try those out.

  • Hello breekins.

    I don't know what gastric paralysis is so cannot comment there as I just have PBC and as far as I know nothing else. Just take the urso daily, have since Dec 2010 at PBC diagnose.

    Did you suffer nausea prior to the gastric diagnosis? If not could it be all the tablets that are clashing and causing this? You can apparently can suffer from nausea with PBC and it is recommended that you try to eat little and often.

    I don't think most people understand fatigue so you are not alone there. I know myself back in 2010 when I started with the itch (I still have, usually night time only but it plays havoc with sleep), I was fatigued . I could come home from a full day's work in a demanding job where I'd been on my feet since rising at 6a.m. and not getting home until gone 6p.m. most nights, I would sit down on the sofa, fall asleep and then it was very difficult to wake me up so I ultimately skipped many a meal in the year of diagnosis.

    I don't suffer from fatigue these days, mine seemed to leave me in 2011 sometime. I do get tired around 3.30p.m. though due to lack of sleep the previous night.

    For me the best way to explain it was you feel like a battery that is almost drained away. You keep trying to chug along but the energy is fading.

    Now the year I was diagnosed, I was looking in library books and also on the net in an attempt to find out what could be wrong with myself whilst ongoing doctors' tests were taking place (blood tests and also a scan). I did stumble acorss PBC but never mentioned to the doctors as I secretly hoped I was just rundown.

    There is an American group who has a website for PBC. I'll post it on here for you as you might find it helpful with it being American based. There is also Liver North here in the UK who posts their newsletters online and I'll post that too but also request from Liver North their free dvd on PBC, it might just give your husband some insight when it arrives.

  • Thanks for the reply. I will check out both of those sites. The severe fatigue and the nausea has taken me out of work. I worked in a small hospital as a rad tech but unfortunately the 12 hr shifts was too much. I was falling asleep at work and I have lost a lot of muscle strength even thou I still try to work out ad I could not pull on people anymore which is a huge part of my job. I hope I can be like you and the fatigue will go away. I miss working.

  • I wonder if you have Gastroparesis which is probably not totally unheard of in people who have Scleroderma. I have Scleroderma, PBC, and Sjogren's and now we suspect I have Gastroparesis. I have been told for several years that on endoscopy there is no peristalsis in my Oesophagus, Stomach and Duodenum so the only way food is digested is slowly and by gravity more or less. My gastroenterologist is planning to do a gastric emptying study and a small bowel study which should confirm what is going on. Have you had any of these tests? I follow a careful diet which excludes any raw fruit and vegetables and cuts down on red meat and fats. Lots of liquid food like soups, milk and egg dishes, icecream and milkshakes. If I stick to this regime and only eat small amounts I feel much better. I also take a load of meds. including Motilium which makes all the difference to the vomiting. I know there is a warning about Motilium/Domperidone but my docs and I have decided that the benefit outweighs the possible problems. Everything is monitored and nothing untoward has appeared yet.

  • Thanks for the reply. Yes I had the stomach emptying test first which concluded it was taking me 290 minutes instead of 90 to just half way empty my stomach. I go for the EDG on Wednesday to confirm diagnosis. I have been doing the liquid duet for 2 days now and it has helped with the nausea but I am craving some real food. Haha. My GI has put me on Reglan for now to speed up digestion but this med is only allowed to be taken for 12 weeks so I'm curious about what comes next.

  • That's interesting I have never discussed this problem with another 'victim!!' I do eat some real food but only very little portions. I had a partial gastrectomy 10 years ago because of suspicious tumours so my capacity was reduced then and I have become used to eating less anyway. Will be interested to compare notes some time after my tests.

  • I would also love to compare. I have not met anyone else with this before. I'm having the EDG tomorrow and will let you know the results.

  • What is an EDG?? Endoscopic D......................... Gastroscopy??

  • Lol sorry typo EGD. Esophagogastroduodenoscopy.

  • Oh! that is probably the Duodenum study my Doc was talking about. Although she did mention a small bowel study too.

  • Meant to ask, do you have Scleroderma too?? I know you wrote in PBC forum but wonder why you have Gastroparesis because it doesn't seem to be to be a PBC side effect.

  • I am going to ask my doc at my next visit to check on that. It seems like once you have one autoimmune disease you tend to develope more. Go figure. Headed to do the EGD. I will let you know what they say. Wish me luck.

  • EGD was normal. They did take a few biopsy samples cause i have alot of inflamation in my stomach. We will get those results in a few weeks. Let's hope it's all good news.

  • It hastaken along time and lots of visits to the hospital butI now know that I have a condition of the Oesophagus called Achalasia. My Oesophagus is distended and there is no peristalsis, the bottom sphincter is tight so it's like a sausage!!!! Only way food gets to my stomach is slowly by gravity, thank goodness for Isaac Newton!!! Diet adjustsments are the only remedy so that is what I do.

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