Does anyone know if gastroparesis is progressive over time?

Gastroparesis sometimes has a mind of its own. I was diagnosed with it back in 2017 along with several other conditions (duodenal stricture, ulcers, inflammation). The docs wanted to do a partial removal of my stomach and upper duodenum. Thank heavens I'm an RN and questioned it. I went to Mayo Clinic (Phoenix) and the team thought that surgery was a bit premature. I was diagnosed with Crohn's Disease for which I receive infusions of Entyvio every 8 weeks (which is no big deal). Today I feel good and function normally. The gastroparesis, strictures, and ulcers have disappeared. Thank heavens for up to date medicine! Just the same, I do eat slowly and chew well (which everyone would benefit from doing!) and have minimal problems.

interesting that the Botox injections made things worse.
There are two procedures you should look into - they only do them at specialty centers. i just changed my insurance so that i could see a doctor at one of these centers who does them. It is a pyloroplasty and a pyloromyotomy. The pyloroplasty is supposedly the #1 solution for gastroparesis. it is done laparoscopically (small incisions in the abdomen). the pyloromyotomy is less invasive - they do that endoscopically (like an upper scope - with a tube down your throat) however if you read up on the internet about it apparently it sometimes only lasts 1-3 years and then you have to have the pylorplasty after the fact. Most "regular gastroenterologists" won't be able to help you and for some reason they also don't tell you about these procedures. I was advised to "drink Ensure - you can live on it for the rest of your life"!!!!!!!!!!!! Really???? i found out about all the options by doing my own research. There is also a gastric implant - like a pacemaker called Enterra - which stimulates your stomach to contract. Try to find a big university center near where you live or google your state e.g. "pyloroplasty in Florida" or something like that. hope this is helpful

Hi Thanks for your recommendations. I have heard of all the procedures you mentioned. Two complications is I have EGJOO and Gerd, so if I have the surgery then there is another for the Gerd, as with the Botox it made my Gerd worse. I can not drink Endure or any of those protein shakes as the casein bothers my stomach. There is a gastroenterologist near me that performs the Enterra surgery. I will continue to find a doctor who is the most experienced in the procedures. Hoping you stay well and thank you!

I am glad you are doing well .
My gastroparesis comes and go but I have medication that comes from Brazil because the one here have away too many serious side effects.
I have had ulcers , diverticulitis which the second time surgery was required to remove part of my colon .
IBS and just the last year a new Gastro was able to precise give me the diagnosis of Crohn’s 🙏🏻 which is awful disease my infusions are working well every 8 weeks now . I am saying this is temporary because I am believing that JESUS will heal me and set me free from this .
Hope the best for you .

You have been through a lot more than I have! Crohn's is known for having the "symptoms" like ulcers and gastroparesis, strictures, and ulcers coming and going. Fortunately I have done very well with Entyvio infusions every 8 weeks at Mayo Clinic and haven't had any recurrences of symptoms since I have been on it. I hope you continue to do well on your infusions and that they permanently help you.
The best to you as well!

Amazing support group with knowledge on FB.

I was diagnosed with GP about 5-6 years ago. It was about a year after having radiation treatment to my larynx for a small tumor that had been removed. A couple of months after finishing radiation treatment, which left me with severe burns to my neck, I developed a painful throat infection. A specialist at a well regarded hospital put me on an aggressive course of antibiotics and anti fungals for 30 days. That’s when I started having GP symptoms, which, at first, was diagnosed as IBS. The gastroenterologist thought the medications had destroyed the good flora in my stomach. I don’t know if that’s what started it, but it definitely has gotten worse. I just started to get serious about my diet. I have little to no appetite and have lost about 17 pounds, more rapid loss lately. My symptoms are: I have very frequent small bowel movements for several hours after I get in the late morning. Some days, especially lately, it can go on almost all day. I have a history of hyperthyroidism and my labs have been a little crazy. Finally within range. My endocrinologist has adjusted my medication. All these daily bowel movements have resulted in painful hemorrhoids. So, I’m pretty miserable.
I don’t vomit but I feel full after eating a small amount and it feels like there’s a wide tight band across my waist.
Anybody have similar symptoms? Would appreciate any suggestions. Thanks.

Well, I officially was diagnosed on1/24/2023. But issues started about 5 -6 years ago and was diagnosed with IBS. Few rounds of medication for suspected ulcers. It would quiet for a bit and then often start quickly back.
I have been a type 2 diabetic for about 22 years. Starting in the Summer of 2022 three things seemed to happen at once. I could not stay out of the bathroom, constant diarrhea with cramps, and gas both upper and lower. constant pain, The kicker that really did me in, I could no longer control my diabetes, which was totally uncontrolled. In December met with the endocrinology team, Had the test on January 24. So been following low roughage, low fiber diet, and trying to keep my total carbs per day to 150. The amount of two good yogurt and low-fat cottage cheese is a staple, My commitment was 90 days and then start bringing some food back. Whitefish I can eat with no issues. I so miss fresh fruit and fresh veges. One time I had some watermelon that will not happen again.

How awful for you to be going through this and then on top of that, the physicians you are seeing are not respectful and nonchalant about your pain.
That makes me angry for you.

DO NOT let doctors treat you poorly. If one treats you badly and dismisses you like you described, find another doctor.

Here is the shortened version of my story. I hope it might help you in
some way:
I was diagnosed with cancer two and a half years ago. However, the pathologist and oncologist misdiagnosed the type of cancer it was. When I started researching it, some of the pieces just didn’t seem to fit, so I contacted MD Anderson, in Houston, TX. Long story short, they gave me the correct diagnosis and likely saved my life. The initial oncologist I saw seemed intimidated and insulted by my self advocacy.

Following my chemotherapy, I developed gastrointestinal neuropathy. The chemo damaged my vagus nerve. This caused severe GERD, gastroparisis and slow intestinal motility. I again, first went to a local doctor and surgeon. They did a fundiplication. It did not work and symptoms continuously got worse. The reflux, burning, nausea, vomiting, etc. was horrific. My oncologist at MDA finally referred me to a gastroenterologist there. He, in turn, recommended surgery and referred me to a surgeon at Houston Methodist. Dr. Lee Morris ended up redoing the fundiplication that appeared to have not been done properly, removed massive adhesions that had formed in my abdomen, repaired a hiatal hernia and performed a pyroplasty to treat the gastroparisis.
It took him 6-7 hours of surgery. However, it has been a godsend. The pyroplasty is not a cure all, for the gastroparisis, but it is SO much better. I still have to eat slower and in smaller amounts at a time, but if I do it right, I don’t have those miserable symptoms everyday.

Please find yourself a doctor who will listen to you and have empathy. If you have to travel to do it, I promise it will be worth it. Don’t let doctors blow you off and dismiss your struggle. You know your own body better than anyone else. Doctors who respect that are usually the best ones.

Again, my surgeon is Lee Morris, at Houston Methodist. He did an amazing job for me and gave me a life again. I wish you luck in finding relief.

Best,
TJ

I had a long (2 months?) bout of being off, with no solid stools.I believe it was stress related, but I do have a redundant colon. Was x-rayed, badly impacted, lots of miralax, several rounds,etc. Very stubborn. Put on LInzess, really disliked it--urgency, stomach pain, I thought weird smell, maybe just me. Anyway, I just stopped taking it. My main problem is bloat, so I guess I'm lucky, but I do hate it. AM doing the water, really switched up diet to fiber and plant based, stricter about exercise,take culturelle and gas-x. If anyone has similar and has found an answer, let me know!