← Return to Collagenous Gastritis: What treatment(s) work for you?

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@adubbs79

I had two stomach bleeds that required hospitalization, June of 17, on carafate and Protonic, then discontinued Carafate after a month and Protonic after 3 months showed ulcer healing. Then Dec of 18 second stomach ulcer requiring hospitalization. I've stayed on Protonic since then, 40mg. It was after around the 8th endoscopy in May of 19 that my diagnosis of CG came. Prednisone 40 mg for a month helped (June-Aug2019), but that's not sustainable long term. I tried; 6 major allergen food elimination diet, no coffee no alcohol no mint no acid diets, low fodmap, gluten free and dairy free for 6 months, Chinese Medicine/herbs and accupunture. With most of these I would have a temporary abatement of symptoms, typically for about a month, and would become very excited that "we had figured it out!" Only to come crashing back to reality after about a month being symptom free to the burning pit behind the sternum and occasional pit/rock/tightness in my stomach. Dietary changes had no change in endoscopy results for me, (that doesn't preclude those dietary modifications being helpful for others). Most recently (Jan-March 2020) I was on swallowed budesonide 2mg/15ml in a slurry. This needs to either come from a compounding pharmacy or you can do it on your own with multiple Splenda packets. 2 mg/day was the dosage. I preferred and was able to locate a local compounding pharmacy as I didn't want to invest 10 packets of Splenda a day every day. I was on the budesonide slurry for two months. During the time I was on it I was able to eat and drink whatever. So far so good, although I am only but a month being off the budesonide. Hopefully it will continue.
Both times for me being on a steroid, Prednisone first, then swallowed budesonide second, the amount of "active gastritis" on biopsies was reduced and my symptoms were significantly improve. Budesonide is a significantly safe drug as it's effects are localized to the GI system rather than Prednisone which has a significantly higher systemic effect. I hope that this is of help! Please feel free to reach out to me if you need clarification or more information! Stay safe, stay healthy, wash your hands and stay home everyone!

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Replies to "I had two stomach bleeds that required hospitalization, June of 17, on carafate and Protonic, then..."

@adubbs79, thanks for joining Mayo Clinic Connect to share the treatment that works for you for Collagenous Gastritis. What you describe about making changes to diet would bring "a temporary abatement of symptoms, typically for about a month, and would become very excited that "we had figured it out!" Only to come crashing back to reality after about a month…" is an experience many here can relate to.

I found more information about budesonide slurries here:
https://www.eosinophilicesophagitishome.org/eosinophilic-esophagitis-treatment-overview/eoe_treatment_oral_viscous_budesonide/ Budesonide (Pulmicort) is an steroid medication that has been used to treat asthma. In recent years, it has also been used as an effective therapy to treat the eosinophilic inflammation in EoE. This type of therapy has been known as oral viscous budesonide (OVB) or a Pulmicort slurry."

May I ask what led to your getting budesonide prescribed? You've been on it for 3 months now?

@adubbs79 – Thank you for your detailed history of your treatments! Very helpful. Even though collageneous gastritis and colitis are so different I found Budesonide was able to bring me to a tolerable level of discomfort. Imuran finally healed my insides, but side effects of several bacterial infections sucked the energy out of me. I hope you isolate yourself now- take no risks.