Gastroparesis - say what?

[012703060610]

For three years, I have been battling with bowel issues. Well actually my whole life I remember needing to know where all bathrooms were. After getting COVID in 2020, I lost 40 pounds in 6 months clocking me in around 95 pounds. I thought I was going to die, I as blacking out all of the time. All GI testing came back. Gallbladder, etc. All clean except polyps I guess. Finally, I did a pill endoscopy and they found that I have delayed gastric emptying. Does anyone else suffer from gastroparesis? So I essentially have a stomach that won't move and builds up tremendous acid. I have two rare autoimmune disorders and we had hoped I had some type of IBD that could be controlled with the same type of meds. This is something totally different. I have been close to full house bound as I spend hours around the toilet but also hours eating to make sure my weight stays up. A lot of liquid and soft food only. Constipation is pretty much guaranteed. The meds for this have scary side effects (parkinsons tremors, etc). So while I do not have Chron's, I think we can say I am on the colitis side. Also, do others take PPIs for GERD? I'm curious as to the amount. I am on 80 mgs of Omeprazole (40mg AM and PM). I just had a nasal scope and my upper airway is still inflamed from acid. Crazy! So hi to everyone!

[kel89]

Hi, I’ve been battling bloating for years also. They just keep saying IBS with constipation. I have a brown mucus after pooping or there isn’t anything on the tissue. I have cramping, fever and fatigue at least once a week. If you find any answers, please let me know. I’m at my wits end suffering. Thanks and I hope we both get this figured out.

[012703060610 in reply to kel89]

Have you been able to get a pill endoscopy or gastric emptying study? I would demand one if you have not. This is the only way to identify if you gut is paralyzed. I am assuming you've done regular colonoscopies/endoscopies. The brown mucus you suggest sounds like Small Intestine Bacterial Overgrowth (SIBO). It would likely smell worse than normal BMs. There is an antibiotic (Xifaxan) that treats just the small bowel for SIBO. I have had to take it about twice a year and it does work. I understand the suffering. I am a bit of a wild animal when it comes to Drs not listening to my symptoms and I traveled all over the country to get where I needed. The fatigue and fevers do feel like autoimmune something. I started something called LDN 3mgs at night time. It has improved some of my symptoms for GI as well as autoimmune. It is a dirt cheap drug they don't like to sell here in the States. However in the UK, it's been used for so many conditions for decades. Take a google of LDN to see if it is something worth talking to your doctor about. Keep pushing for what you need to get done! You deserve a better quality of life!

[kel89 in reply to 012703060610]

Hi. Yes I’ve had several colonoscopies but never the pill cam. I’ve been to several gastroenterologists. They all just say IBS and now want to refer me to the Mayo Clinic but that’s out of state for me. I’ll ask about the LDN. Thanks so much for the advice.

[012703060610]

mayo GI was awful to me! So much red tape. My family is full of Drs….if you want to pm me on your state location….may be able to help. Keep fighting for your health. Same thing over and over….ibs. Ultimately the LDN has relieved pain and pressure. I still go like 4-10 times a day…but any relief is a win.

[kel89 in reply to 012703060610]

I’m in South Carolina. I have been to GI’s in Myrtle Beach and Charleston SC. Thanks so much for trying to help.

[bedfordlodgers1]

I wish I had seen your letter earlier, I thought I was the only one with this problem. Since I had a Hiatus Hernia operation years ago I have not been able to be sick. It has been the worst thing ever. I have rheumatoid arthritis and very bad peripheral neuropathy which means I do not feel my legs very well. I am wondering if this has slowed down my digestive system . I have bowel problems as well and do not seem to get a straight answer from anyone about this condition. I try to be sick but just end up gagging and it makes me feel like my ribs are broken. am due an endoscopy next week so I hope this will throw some light on it. I had never heard of Gastroparesis before. I wish you well.