Colitis Survivor

[Sunset203]

Hi. I have colitis that began to present in December of 2023. After a month of nonstop 24/7 diarrhea that was not addressed by my primary care physician, I decided to get the names of gastroenterologists from my healthcare insurance provider and present to my primary care physician for a referral for insurance purposes. I saw the gastroenterologist who checked my medical chart and found a diagnosis of colitis from a 2016 colonoscopy. I had never been informed of this diagnosis. The gastroenterologist prescribed Budesonide. I took Budesonide EC 3 MG capsules for 2.5 months. Thankfully, the diarrhea stopped after the 2nd dose. Took 3 capsules by mouth once daily for 6 weeks then 2 capsules once daily for 1 week then 1 capsule once daily for 1 week then 1 capsule every other day for 1 week. Had 40 side effects but worst was/is insomnia, full body night spasms, weakness, Gerd and emotional problems. After 3 months off the Budesonide I'm just beginning to notice the side effects subsiding. Hope it doesn't flare up again. I can't imagine what many go through. I guess there comes a point when you have to decide you're stronger than the disease and keep on going and do the best you can. Despite being physically active in dance and sports my entire life, I also have severe osteoporosis and am about to go on Evenity injections for a year, then Prolia. Scary & expensive stuff. I hope my experience helps others and I'm looking for helpful health tips that will hopefully keep this at bay. Began probiotics, protein shakes, cut out red meat, coffee, avoid fruits & veggies with skins and am eating healthier. I retired after almost 50 years, then worked part time a few years and now thankfully walk a few miles every day (5-10K) and am going on 12 years transporting and escorting patients as a hospital volunteer and working as a notary one day a week. I see many patients with devastating health issues who carry on the best they can. I figure if they can do it, I can too. In my spare time I compose music and create videos which helps me focus on something besides the colitis issues.

[Jameshuh]

Sorry this happened to you and I'm glad you are starting to get a handle on it. I can relay my experience of what worked and didn't work in my years with UC you will be bombarded with advice no doubt so i'll keep it to a dot point list of what actually worked for me and what to avoid and hopefully you might get something out of it:

Avoid:

-Sugar: refined sugar is just poison

-Alcohol: this is the main reason for flares in my experience

-Nightshade veges: Capsicum, eggplant etc

-Coffee: too much caffeine in one hit

-Dairy: during a flare

-Fried food: oil greasy stuff is no good

Alt meds that seem to work:

-Slippery elm bark: this helps maintain your gut I was on this for many years

-Black seed oil aka Niagella Sativa aka Kolonji oil

-All meat diet: it seems counterintuitive but this actually worked for me it was bizarre but hey. I couldn't maintain it though as it was too inconvenient and expensive.

-Magnesium Glycinate: Helps manage stress and loss of magnesium you could check for other deficiencies i.e. potassium and others as UC causes them to be lost from the body at higher rates.

Foods:

Broccoli Broccoli Brocolli - So good for the gut

Saurkraut - also good for the gut

Steamed fish - a piece of cake for the body to digest

Grass fed beef thinly sliced - good to replace minerals and easy to digest

Eggs - nature's multivitamin

Organic oats (with or without chia seeds) - good for energy easy on the gut

Green tea - get yourself a good loose leaf organic green tea and have a pot every day, it is excellent for managing stress and is a good ritual. The more you can manage stress the easier your body can divert all its resources to managing UC.

Hope that helps and I wish you luck.

[tiredpuppy]

I've suffered from lymphositic colitis for years. I had become nearly a recluse because of too many extreme accidents. I would have to take Imodium before going anywhere, but that caused uncomfortableness later. Last year I discovered slippery elm. I started with 2 capsules 3 times a day on an empty stomach. I can honestly say I am 70% better. I still have problems but they are SO much smaller and more manageable. I am taking it only twice a day now, still on an empty stomach. And I still avoid fried and spicy foods, etc., and I am a vegetarian, non-drinker, non-smoker, non-coffee drinker. Lifestyle is important. The brand I like now is Solgar.

[bantam12]

You should be on a long term med like Mesalazine which can keep you in remission rather than risk flare ups which will need stronger meds and take longer to resolve.