Once again the iHaveUC newsletter subscribers have outdone themselves. All to benefit other UC’ers who will be surfing this website in the future. Awesome. And a great way to start off 2022.
As a reminder to how this survey began, a newsletter subscriber named Paul responded to a recent message requesting we do something like this…and a few days later here we have it. Thanks again Paul.
So, when the UC’ers of the world were asked what is their “Game Changer” or best tricks for stopping active symptoms or maintaining remission…here are the answers which as you can see is based on their personal experiences with their ulcerative colitis. (Oh… a HUGE thanks to the 8 brave souls who added your photos, some lovely faces once again!)
- Revert to bland diet or go to liquid diet.
- I stop everything go to bed and rest do lots-of relaxation Yoga NIdra and breathe! I think this is the game changer because even if I take the steroids which I do if I do not rest they take a long time to work I am lucky enough to be able to do this
- When I have a flare, I have to go back on Uceris tablets. If the flare is really bad I’ll use the Uceris tablets and Uceris foam.
- Debora, from Concord again. I left out a big section of my survey. I am presently taking 2400 mg of mesalamine twice daily, 3 mg budesonide 3 times daily. Those get cut back when I start showing remission. Now this should be complete!
- At nearly 70 I’ve been dealing with UC for 25 years and had many episodes with prednisone to put the fire out, temporarily. I’ve been with Dr Varon in Concord California for a few years & he has me on a intense & costly regimen. It has worked well off and on but presently I’m sure it’s my diet (sweet tooth & some wheat) that is interfering with its best results. I make up a weekly supply of a smoothie that is 1/2 cup of plain lifeway kefir 1/2 cup of almond milk and 1/4 cup of pomegranate juice. Then the mixture of dry ingredients I make in separate containers is: visbione-pharmaceutical probiotic 450 billion, Florestor probiotic 2 to 4 capsules, 1-T maqui pwdr, 1 lrg tsp L-glutamine pwdr, 1tsp beet pwdr, a T organic acacia pwdr, 1 T ground flax. Once a day, vital proteins chicken broth & collagen flakes in hot water. In addition to my daily supplements I take 2 capsules reg’activ, 2 capsules of emu oil, 1500 mg of mastic gum, 1500 mg tumeric. Once daily in between meals 1 capsule each- tudca & taurine. This regimen is overwhelming at times but it has kept me off of prednisone. Probably due to being reckless with my diet, I have a minimal diarrhea with a slight red of blood, two or three times a day & a regular soft BM for the last few months. I’m going to get strict with my diet and expect to get full remission. I use the SCD diet to the best of my ability but not exclusively. This takes perseverance and discipline. Best of luck! Debora
- Dear all Greetings. I am 67 yes old, diagnosed UC 8 yrs back. Have multiple comorbidities. Have had four major flare ups. Put on very high doses of Mesacol and steroids with other supportive treatments. Underwent emergency colonoscopy for severe bleeding. Did searching on ancient Indian traditional medicines. Came across Bel patthar /Bael (as called in Indian Hindi and “Bilwa” in Sanskrit). Also known as stone apple and wood apple. Scientific name Aegle Marmelos (considered as a spiritual, religious and medicinal plant by some).Taken as fresh pulp of ripened fruit or its juice . I prefer to take fine powder of ripened fruit approximately 15 grams (1tablespoonful) at night after meals. Been taking for 8 months with stunning results. Mesacol reduced to one fourth . Steroids completely off . I expect, after taking above for a couple of years, I should be totally off all medications and should be “cured”. I have ofcourse included self-learnt, as a hobby, treatment of “Metaphysical healing” (almost entirely misunderstood/not understood by most) with above management. I have been studying, learning and practising successfully Metaphysical healing for almost 3 decades for many ailments including obstinate and dreaded ailments like auto immune and others. This does not constitute any double blind placebo controlled or any other such study as accepted by morden science. This is only to make fellow patients aware of such a possibility. However personal discretion and opinion/consultation with relevant consultant/treating physician should be exercised/sought before taking it. Being an ENT and head and neck surgeon myself with long experience I feel obligated to declare that I have no personal interest/intent to promote the said remedy and have not received any grant from any source. Hope this may help somebody somewhere even an aota . Wishing you all good health. Best and regards. Rakesh Sharma
- Stick to the diet you following. In my case, the food I eat has to be clean and don’t taste funny/unfamiliar taste.
- When I’m in a flare, I usually drink lots of fluids to stay hydrated (no coffee), eat very simple cooked foods, and get plenty of rest. I try to keep the stress levels low, read, and pray. My UC is well-controlled right now with medication and regular exercise.
- Summarized as “Beige food”.
- Drink water and decaf tea only. Very strict diet of chicken, peanut butter, soft foods, increase my tablet’s
- I always took prednisone to stop a flare. But then the last time I took it, it didn’t help. My Dr. Put me on mesalamine, oral and rectal. It works but just before the holidays I missed one suppository, by the next morning I was bleeding. It went downhill quickly after that. Inflammation attacked my whole body and I could barely walk. My dr. was on vacation and so was my gastroenterologist so I saw the Dr. On call. He gave me prednisone and I took the four pills at 4:30 am so I could hopefully feel well enough to attend thanksgiving that day with family. It worked!! It was amazing. I felt so much better. Finished the prednisone and continued on my mesalamine. Haven’t missed a dose of mesalamine since. So far so good.
- I was diagnosed in 2010: pancilotis ulcerosa at critical condition. A couple of days of life left… Fortunately I have unbelievable support from my family and doctors, which help me get out of this situation. Currently I am in remission for a last 5 years with subminimal doses of drugs and healthy diet. I will try do describe how I did it: I have started with standard treatment: Encorton (prednisolone) for 3 months (standard treatment scheme), Pentasa (mesalamine) 4 g a day – now 1g/day- only this mesalamie works for me – I have tested 4 different and only from this Pharma company it works well, moreover: probiotics (omnibiotic stress repair or vivomix – everyday), propolis (before each meal), folic acid 15mg/day. Zinc (extremely important) 27mg/day (separatelely from other supplements since zinc “does not like” other trace elements especially magnesium. Moreover, I supplement magnesium (300 mg/day since I drink a lot of coffee now :) Ultimate omega from Nordic Naturals and vitamin D in wintertime . Once a year I take Quinomit Q10 fluid and B12 MSE max from Mito Pharma. That’s all about drugs and supplements but equally important is in my opinion diet – without processed junk food – only ecological food. A lot of vegetables. Small amount of meat – rather wild/eco fish than red meat. Almost zero of sugar. Mentally: yoga. These puzzles works perfectly for me. All the best for all of you, Regards Andrew / Poland
- I have been eating lots of soluble fibre in terms of legumes 1-3 times a day as recommended by Nutritionist Karen Hurd and it seems to be working really well. Worth a try.
- Stress is the main cause for flare-ups in my case. I tend do do a lot of exercise swimming, cycling or running to keep me balanced and get back to normal again. Also keep taking the medicines on time.
- Try to eat sensibly, and to get on a diet that is good for you. Take your medications regularly and if you are just on a simple diet that helps, please maintain it!
- i was diagnosed with UC in 2003, For maintenance and remission of UC : 1) Raw organic cabbage smoothie, celery smoothie, carrot smoothie, cucumber and lemon smoothie. Once a week i drink a green leaf smoothie. 2) Lots of fresh fruit – papayas, apples, bananas, oranges, pineapples 3) Probiotic – minimum 50 billion CFU and also take Saccharmoyes Boulardii 4) Exercise everyday – elliptical and brisk walking 5) No spicy food. 6) I take a multi vitamin supplement daily together with an omega fish oil capsule 7) Salazophyrin medication – 19 tablets per week 8) Fasting – 12 -13 hours , 5 days a week 9) Prayer and Faith in God. Last colonoscopy – 2019 , no visible sign of ulcers.
- My UC game changer has been Stellara. I’ve been on it for about a year and it has given me my life back. Also if you can find the bell product Curcumine X2000 it will control the sore muscles and joints.
- Definite fasting to give digestive system a break. First cold pressed olive oil daily, high quality pro biotic, mostly eat scd foods till everything calms down. Stay with everyday vitamins, (d,b and a multi), also fish oil. Also have used natural fermented L glutamine as its supposed to help with diarrhea.
- Low carb diet, exercise/movement every day, Vitamin D3
- Okay here goes and in no particular order. 1. VSL probiotic always kicks me out of a flare it just can never get me into complete remission (steroid dependent on a very small dose). No other probiotic has ever matched this and I’ve tried many with similar strains. 2. Ginger root consumed in small doses always stops bleeding (but not always the flare). 3. Here in the Uk we have chucking goat kefir (I know!) and I’ve had lots of success with that. 4. Apple Cider vinegar works amazingly well but only from a UK company that flement differently (Willys) 5. Vaping CBD oil stops a flare but I just can’t handle the dude effects such as sore throat etc. Thanks again Adam for an amazing site! Paul
- prednisone and get back to solid basic low carb and low sugar diet. It works fairly fast for me!
- To avoid a flare I live a disciplined live, that is live healthy, eat healthy by sticking to the fodmap diet, avoiding junk food or alcohol and eating at regular times of the day, staying fit and getting enough sleep. The only medication I use now over the last 6 months is Colestyramine (Questran) which helps in getting a more solid stool. Try to find your balance in live. Staying mentally fit and strong gives you a great advantage too in controlling your second brain! All the best to you all! Martin
- this is my personal protocol which works for me – keto diet (limited carbs but no pasta/rice/bread) plus cabbage or celery juice ever day (morning), a tablespoon of OVOO (occasionally with 4 drops of oregano oil), prebiotic (MegaPre Precision Prebiotic) plus vit. d3 , zinc . when the flare comes I also include my home made chicken broth and up the intake of oregano oil
- My go to gut fix is pretty simple but it works for me. I drink only water. Add some quality tea after a few days. Make a pot of homemade chicken bone broth soup to live on for a few days. As soon as I notice I’m feeling better I’ll slowly add in more cooked vegetables and then some lean meat. I also drop all grains to get my system back on track. When feeling better I’ll add back a few high quality grains. I followed this program a few years ago after being on Remicade for a couple years. I was able to drop all meds with in the first year and I’ve never looked back
- I diligently followed the Specific Carbohydrate diet for a year during which time all symptoms disappeared and I weaned myself off of all medications. If I start feeling anything at all. I immediately go back on the diet for a week or two then am watchful of what I eat for a bit after that.
- SCD has always been my go to when a flare arrives. Unfortunately my last flare (2 years so far) has been a a challenge. I’ve tried so much these past 2 years, with little success. But recently I found a game changer. I’m now using Modulen nutritional supplement. For the first month it was about all I ate. Now I’m doing add intro modulen a couple of times a day. I’m having normal stool once a day and my pain and inflammation are almost gone. Still some blood, but a vast improvement over where I was 6 weeks ago. Hope I keep heading in this direction. Something I’ve learned in my 15 years of UC is that every flare is different, and you just have to keep switching things up if things aren’t working. Good luck to all.
- Stop eating for 24 hours, just drink water . After that live on clear soup , take fibre and probiotics. Stop taking drugs , re boot system .
- Get back to the basics of SCD or its modern version, IBD-AID (https://www.umassmed.edu/nutrition/ibd/ibdaid/). Meaning, go back to step 1. Reduce stress immediately and put your health as the #1 priority. Get into the gastroenterologist as soon as possible.
- My IBS/UC problems all began after my first colonoscopy 15 years ago,(age 65). Wiping out all of your gut bacteria with a gallon of polyethylene glycol not only seems unnatural but it raises the question of a root cause of the increasing number of IBS cases and often related c- diff outbreaks…. Might be interesting to find a statisrical correlation ! ….Dejay
- I’ve been on mesalamine for close to 15 years now and got the most part my flares are minor and few. I would love to find a low calorie UC diet that would help me lose weight. Most of the diets I see are very high fiber and that’s just asking for trouble.
- Do pranayama, and other stress management techniques. Bump up Meriva (curcumerin supplement) and Omega 3
- I have UC with constipation. When I have a flare up, that’s my body’s way of telling me that I either need to watch my diet more closely or try to get “away from” whatever or whoever is causing me stress. Diet & stress level are the two key factors for me. Red meat will cause me constipation. I need to make sure that I get fiber, fruits & vegetables daily in my diet. I prefer frozen fruit to warm up with my morning oatmeal. Frozen broccoli warmed up with my evening meal has also help me as well. ~ Ann G.
- Doing Whole30 significantly reduced symptoms (urgency, pain, bleeding, etc.). Upon completion of Whole30, reducing dairy, complex carbohydrates, and alcohol have helped keep flare ups at bay.
- 5mg of prednisone a day for a few weeks then half for a few more weeks low dose works for me less bounce back that occurs when cutting down from higher dosing.
- skin off all veggies and fruit – no seeds – low fiber – turmeric tea, fresh ginger in water
- My go to daily maintenance is : L-glutamine capsules 1x day, George’s (aka the runner’s drink) distilled aloe vera (it tastes great, like water) www.georgesaloe.com, Vitamin D 1 gel tab 4x’s wk, B-50 capsules 1xdaily, Traditional Medicinals.com “Gas Relief tea” as needed & “Throat Coat” tea which contains slippery elm = healing. I am gluten free & lactose free, limited dairy, only eat chicken (which has L-glutamine). For anxiety or just for a balance of mood; L-Theanine 200mg. absolutely a lifesaver & non habit forming or impairment. I had Covid, was only 5 days away from vaccination. I continued all of the above but added “Gentle Warrior Pipe Cleaner” drops 3x’s a day for congestion, it prevented an infection (Dr was impressed). I put 1 dropperful in 4 oz of iced tea. i am starting yoga & meditation next.
- What has helped me so much with my UC is to use Digestive Advantage Probiotic and digestive enzymes.
- I’ve tried many things, but recently started using an herb call “indigo naturalis” which seems to be helping significantly. My word of caution is it seems to be quite powerful, and so I suggest consulting with your doctor. Hope this helps.
- On flare ups: daily dose of steroid iv. For food, just depend on iv solution. Thanks.
- It usually is brought in by a build up of sustained stress. So I try to notice that , to acknowledge it in my head and in my heart and to name it. Then I put an intention of stepping back and taking rest time or quiet time , no matter how much it might seem I have too many pressures to do so. Rest and good sleep and unInflammatory foods which includes no dairy or uncooked veg. Along the lines of the SPD diet, but not too strict. Getting out into nature, basic exercise like walking, and the company of someone calm and understanding is soothing. Gentle yoga. If I do this as soon as I notice changes it seems to turn things around. I feel life is too short for me to let it spiral into a full flare, and use the threat of one as a warning to me of my limitations where in my case I may be trying to emotionally accommodate too many people. We are limited beings and not invincible. I’m not sure if this makes sense , but hopefully it might resonate with some. Be well. Be kind to yourself.
- I have been a pescetarian for six years which helped me a lot and only seem to have mild flares from time to time now. When these come up I cut up a fair amount of turmeric root and consume it with plenty of water once or twice a day. I never quit medicine though. I take Asacol tablets and sometimes suppositories. But before the pescetarian-project and the turmeric root it did not help all that much.
- When I have a UC flare I immediately go back to stage 1 of the Specific Carbohydrate Diet. If that doesn’t stop the flare within a day or two, I start back at the Intro stage. That has always worked for me. My normal diet is a modified SCD, but I find it hard to do that 24/7/365 and I have months where I eat mostly SCD with some fun stuff thrown in – mostly chocolate. I used to think that food was causing the flares. Now I think it is mostly stress that causes me to flare, but the right food definitely helps heal my gut. I am lucky that my UC falls in the mild to moderate category. There are times when I don’t feel so lucky. I have multiple autoimmune issues so sometimes my UC is fine, but my thyroid isn’t. The worst is when they all are acting up.
- I make my own yogurt and kefir. Every evening I drink a glass of yogurt, kefir and orange juice. I no longer take meds.
- Initially removing gluten helped but eventually the only help was to remove the colon.
- Stop all sugars, no substitutes either. Reduce carbohydrates. No starchy foods, ie, no potatoes, no rice or pasta. No alcohol. If there is blood, then I take prednisone. If no blood, I use Salofalk enemas and increase my sulfasalazine. If it’s a mild flare, it will settle quickly. It has been the best by following a healthy, ketogenic diet. Since I’ve controlled my diet, I haven’t had a big flare. I’ve never been hospitalized, or had to have harsh drugs. Diet is the key for me.
- Take medicines as prescribed # Take plenty of curd and rice # Prepare an enema with Aloe Vera juice with sterile water and use it twice a day
- I switch to a low FODMAPS diet and use mesalamine enemas until I feel stable again. I also use essential oils and try to be as gentle on my body as possible by resting, walking, taking baths (with frankincense e.o.), etc. I try to eliminate things that feel hard on my system like coffee, alcohol, grains, raw veggies, etc. I eat gluten free and “clean” all the time, otherwise I have more flairs.
- Visbiome probiotic. My gastroenterologist recommended I take one packet every day. it’s powder and I mix it with a little yogurt. I buy it on the Visbiome website. Pricey but worth it – I haven’t had a flare since starting it. One time I went on vacation and forgot to pack it, and I started to feel a flare coming on – when I got home I doubled down on the Visbiome, and the flare didn’t became full blown. I am very grateful for this probiotic. Game changer for sure for me.
- I stopped drinking alchohol daily and now restricted to once a week. That helped till now. I regularly take Mesacol 800mg tabs twice a day and totally avoid milk and milk products.
- I’m super careful about my diet. I stay away from certain foods all the time because they are guaranteed to put me in a flare — citrus fruit, especially pineapple juice and orange juice, raw vegetables, and anything spicy. There are other foods that I can handle when things are going pretty well but that I completely avoid when a flare seems to be coming on — nuts, dairy, chocolate, vegetables with skins (corn, peas) — and I stick mostly to bland soups, saltines, and scrambled eggs. Unfortunately, I am also diabetic, and the recommended diets for UC and diabetes are just about polar opposites. Usually Remicade rescues me before a flare gets too far to control.
- Prednisone, Percocet,ciprofloxacin
- Double pentasa Meditate 2x15min/day Drink birch sap/syrap that I harvest in the spring and store in the fridge Eat Homemade goats yoghurt to get probiotic bacteria boost
- My daughter got diagnosed at age 3, she is now 15. She has been on a multitude of medications but for those in between flares while doctor adjusts medications, proctofoam enemas for 7-10 days get her out of flare.
- I found Adams website in 2008 and decided to try eating scd. I had mild to moderate uc for over 10 years at that point. I followed the diet for almost 2 years very, very closely, it was difficult but so is having uc. I began to slowly add foods that had been eliminated and I now eat kind of what ever I want with a goal of eating a lot of vegetables. Future colonoscopies showed mild inflammation but I have remained symptom free since going onto the diet. I have added fermented foods to my diet and I take supplements, multi vitamin, vit d, cod liver oil, carotenoids, turmeric, vit c, and stamets 7 mushroom capsules. Also I try to keep my stress level as low as possible as I know that has a huge impact on my health.
- 16:8 diet. No lactose, nuts or fruit.
- If my symptoms get worse or I suspect a flare coming up, I normally turn to foods that are lighter on the gut. For me these include white rice, yellow (moong) lentils, plain unsweetened curd or salted buttermilk, white bread, cheese, cottage cheese, almond milk, eggs, any vegetable soup and fruits such as bananas, peeled apples, papaya, cantaloupe and avocados. These generally make me feel much better in 3-4 days.
- Eat bland and find whats easy on your body to digest – for me its pasta and potatoes even though for others they cant touch those. Zero sugar and alcohol. Go HEAVY on moringa and glutamine supplements. Triple (3 tablespoons a day) what take when I am not flaring (1 tablespoon).
- The last flare I had almost killed me, and I stumbled upon an amazing and aggressive gastro dr that I switched to. I noticed every time I had a flare, I was stressed or angry about something and I would get worked up mentally about it. I made the observation, mentioned it to my gastro, and got my general dr involved. Along with starting Remicade infusions, I started an anxiety medicine and I haven’t flared since then. I do see a counselor, faithfully take my meds, try very hard to practice stress relief meditations or breathing. It’s been 5 years since my last flare. My dr noticed my inflammation going up recently in my bloodwork, so I intentionally got more sleep, I tend to eat the biscuit, noodles, bread diet and watch my fiber intake. I try to figure out if I’m stressing about something and work on figuring out how to resolve it. Sounds crazy but it has really worked for me. It has become very clear to me, that even if I don’t think I’m stressed or anxious, my body sometimes thinks it, so I do my best to keep calm and stress free as much as possible.
- Intermittent fasting Increase intake of fruit smoothies and cut out any cooked food Move towards a plant based diet Add dates to smoothies for energy Chicken / meat stock for supporting energy levels
- Book called “Breaking the Viscious Cycle” by Elaine Gottschall has helped me enormously and I would recommend it to anyone with UC . I believe it is very reasonably priced, used and in like new condition, from Amazon.
- I try to reduce my activities and schedule to minimize stress which aggravates my UC flare. I also stock up on more toilet paper! Lol
- I used Jini Patel Thompsons methods a lot. She talks about healing emotional trauma too. I say used because have been in remission for the last 6 yrs. I sporadically take asacol if I remember/feel like it. Got sick 11 yrs. ago. Total colitis with hospitalizations and did not respond to stredoids even at some point. I however never accepted immunosuppressants. Only asacol and steroids. I do not know why I felt that way, I am not against using western medicine. Just felt I had to do it the other way. Sold my possessions. Finished my degree. Just basically used my money to try and have more fun and changed my life quite a lot. I was on gluten free diet many years. Milk free etc. Tried lots of things. I think the point is to ask yourself and your body what you need. To peel away the emotional layers. I seriously have been grateful for the disease and all the insights and experiences it has brought me. Now I have a huge crisis in my life that has lasted for over a year. Very heavy and dark time and my bowels have been fine. No doubt this too shall pass. IDK, I just want to send love to all my fellow UC ers. This is what I did, you do your thing and find your solution. <3
- Hydrocortisone enemas and then taper off slowly Stop eating any processed foods – clean eating only.
- When I have a flare I focus on diet and stress reduction. Diet: switch to intermittent fasting which is water only for 18 hours and eat only 2 meals in the remaining 6 hour window. Absolutely no caffeine, or processed sugar including breads and pasta. Eat 3 fruits a day and lots of veggies. Fish and chicken is ok too. Lots of water. No red meat. Make smoothies (no sugar) and try juicing carrots, apples, ginger, spinach. For stress: Don’t lay around. Exercise including getting outside, walking or running. Focus on breathing and nature and the present moment, don’t dwell on thoughts – listen to Noah Elkreif videos on Youtube or read “Living in the Present Moment” by him.
- I’ve discovered over the years my UC is correlated to my stress/anxiety level. When I become stressed/anxious and start to feel sick, it’s a wake up call that I need to take better care of my mental health.
- I ended up having a total colectomy and J-pouch which has been a life changer. Meds failed working apart from steroids so was left with no other option in a flare. I feel so much better not being on daily meds, the frequency is higher than a normal person – but nowhere as uncomfortable as with uc!
- Game Changers: – LDN – SCD (of course, this is a constant) – S. boulardii – L-glutamine – Increase probiotics – Gelatin in hot water – drink like tea – Yoga daily – Chicken broth – Eat all meat – Lay on the couch – Cortaid enemas
- Prednisone (30mg taper) and my uc meds Lialda For Maintenance I take daily vitamin with iron…
- My 16 yo son uses an antibiotic protocol developed by Thomas Borody’s team in Australia. He was off meds for 2.5 years, but when a case of Covid lead to a flare, the antibiotic protocol healed him within a month.
- Flare- super strict no sugar no complex carb diet. Drink and eat ginger root heated in water. Every 4-6 hours. Maintenance- diet and B12 with folic acid, lots of supporting vitamins D, C in liposomal form.
- Remove stressors from my life as much as possible and avoid sugar/alcohol/gluten/processed foods.
- I go back to the SCD diet, (that helped me so much in the beginning, but I find it difficult to stick to in long term), sleep, rest if I can.
- I am going to have Hyperbaric Oxygen Therapy (HBOT) starting in early February for 12 weeks. I have moderate to severe UC and have been on mesalamine tablet s and enemas for almost three years and Prednisone three times in the past year over a total of six months. I hope the program will put me in remission to avoid using biologics or surgery. I hope I can report back to this community on my results by mid May. I have researched this treatment and believe it offers good potential for success. I look forward to sharing my results with this community. Thank you.
- I was diagnosed in 2007. Although I was on mesalamine all these years, prednisone was the only med that actually stopped the flare up. Because of constant use, prednisone destroyed my bones, and I was diagnosed with osteoporosis. I was put on a 2-year regimen of Forteo, and went into remission immediately. I attribute the remission to Forteo. I dread the day it will return.
- Newly diagnosed in September so only have experience with initial flare. Mesalamine oral 4 capsules daily now (finished 6 weeks of enemas and have not had any issues since completing those). I also use some natural antiinflammatory supplements (tumeric, garlic, tart cherry juice), probiotics, slippery elm powder made with hot water to drink, boswellia, vitamin D and C. Also use wheat grass and moringa powders (not at all tasty but have read where can be helpful for UC). Have started over the last few weeks to slowly wean off of mesalamine. Going to try and eliminate 1 capsule/per month. So far so good. Try to eat clean, have made gluten free choices when able and limit dairy. I can not say that I notice any foods or drink cause me any distress so it is sort of difficult to know what makes things better or worse.
- Of course I eat bland food, drink lots of water, and eliminate coffee/alcohol. But my game changer has been Bone Broth! I try to drink a cup a day, whether in a flare or not. We all know how it goes…you feel good and forget to do the thing that helps, and no surprise I flare. During a flare I drink as much of it as I can to get back on track. I’ve done homemade but am lazy and usually end up buying it through a company called Kettle and Fire. GAME CHANGER. -Jamila, 35, from Tennessee
- So ironic as I’m having a flare as I write this. Tried and true for me is the elimination of any alcohol, no sugar whatsoever, no gluten and reduce stress. I’ve gone gluten free years ago as I determined that anything with gluten was a distinct irritant for my UC. So no bread, pasta, etc….wholesome and fresh food works best for me. The isolation of the pandemic had increased my alcohol consumption and that combined with the stress my job creates during the fourth quarter of the year (my busiest time of the year)…..and Bam! Perfect combo for a flare up. I also take Mesalamine which I have to double up on during a flare. I typically increase the probiotics I’m taking as well during a flare. It usually takes me 3-4 weeks to get the UC back under control. It sucks but you learn to live with it. Wishing you the best. Christy Romine
- My game changer is Entyvio, the drug that I have been on for the past 5 plus years. It has enabled me to resume a normal life with no flares. However, I do pay attention to my diet and avoid grains & alcohol since those were two of my food triggers. I also drink bone broth on a daily basis.
- Sad to say but prednisone works. Dealing with UC for 18 years.
- The disease of ulcerative colitis is a daily challenge. I was diagnosed in 2016. I have had periods of remission and flare ups, most minor ones but one major one that Uceris resolved. At the first sign of a flare up with loose BM’s or too many BM’s during the day, I start a course when I wake up of two 500 mg. each pills of L Glutamine, along with 3 aloe Vera (500 ea)- the latter is also for my co-morbidity autoimmune disease of interstitial cystitis but the aloe Vera probably helps with UC too. I wait 2 hours before breakfast to help the L Glutamine work. If I need another 500 mg pill or two of L Glutamine between meals, I do so in the afternoon. Supposedly L Glutamine works better on an empty stomach or between meals. L Glutamine has helped bring me back to normal. I don’t take it all the time, but I do when I need it and it really does work for me. The one med that I take daily is sulfasalazine, which normally also helps with my UC but it was initially prescribed by my rheumatologist for my 3rd autoimmune disease, enteropathic arthritis (a wonderful by product of having UC). UC is the autoimmune disease that keeps on giving!! I also take two Boswellia (500 mg daily) and I believe it helps as well. I also ride a stationary bike daily and walk on walking trails. I try to get regular sleep and not get too stressed out. Good luck in this day and age! I have had two Pfizer vaccines and a Pfizer booster with no real problems. I double mask when I go indoors. I worry that any form of COVID would target my autoimmune diseases and take me down, so I am very cautious. Blessings to all who fight and work to conquer the ups and downs of this crazy awful UC disease. It is an individual journey and not the same trip for each of us. What works for one person may not work for someone else. It is a giant chemistry experiment to see what will work and what may help. Stay well on your individual pathway in finding the right formula that works for you.
- I up my meds. If that doesn’t work, I take prednisone. I picked up some prednisone while in Mexico, as a prescription isn’t needed.
- I have been on Humira for two years, so no flares, it is working for me. I have had UC for 30+ years, prior to Humira, I would go to Cordisone enemas and increasing asacol or whichever drug I was on, as well as bland gluten free and dairy free diet, as well as nutritional shakes with visbiome (probiotic) prescribed by functional doctor. I currently use nutritional shakes with Humira, probiotics and gluten free diet. Eat very little dairy, but do enjoy a whole food diet.
- For me it’s all about what I eat when I’m in a flair. I stop coffee, all sugar and just eat very light. I’m not do great with taking my medication every day tbh but when I’m a flair I am very strict about getting it. I’m curious as if to other UC sufferers develop sacroiliitis, for me that is almost as painful as spending my day in the bathroom.
- Very low fiber diet. Lean meats/fish, eggs, bone broth, white rice, collagen and a banana.
- WATER KEFIR & Kombucha have been a game changer for me.
- Remicade has been a game changer for me- been on it 6 years and never looked back. Suffered extreme flares over 8 years, no other medication really worked. Bland diet of easily digestible foods used to help a little- diet consisted of bagels and mashed potatoes, no alcohol. Now on Remicade, I’m on keto with no problems
- If having a flare.. drinks more liquids. Stay away from dairy, wheat, processed food. Lots of rest. I take immodium as needed. I only eat spinach vs mixed greens.. easier for me to digest. I know I feel better eating less wheat dairy and sugar so trying to get back on a healthier diet post Christmas eating.
- Entyvio for me. Two years and counting.
- Entecort (budesonide) has nearly eliminated uc for me. Never any bad flares anymore. Been on it for 10 years approximately.
- I was never able to get my UC under control. I tried everything. Now I have the j pouch.
- Strict SCD diet, SCD soups and broth eliminating fresh fruits and veggies and nuts is a total game changer As well as starting flare meds like steroids
- I take Imuran, 1.25mg, for over 10 years. it is the only treatment which stopped the flares. One flare 4 years ago when I tried to cut down to 1.00 mg. 4 months in on small reduction to 1.25mg. Will not go any lower although appreciating the potentially difficult effects at some point.
- I’ve been taking Humira and 0.5 ml of methotrexate weekly for several years–don’t have any flares.
- start w enemas immediately ( i have a stock at home)
- Entyvio has been a life saver!
- I cut out completely all foods that may be culprits or inflammatory such as sugar (including fruits, herbal coffee) and chocolate even though I try to keep those at a minimum as a matter of course. I try to get more sleep and take stressful things off my plate. I cut out foods that are difficult to digest and eat soups made with my own home made bone broth. I take goldenseal, chamomile extract and olive leaf to calm the colon and reduce yeast overgrowth. I make my own suppositories with coconut oil and add the contents of quercetin capsules. Once I sense some improvement I add back in my probiotic and fermented foods.
- Nothing worked. J-pouch. Anti-inflammatory diet. Life is wonderful.
- Honestly, and thankfully, I haven’t had a flare for several years now. But when I do, I basically remove / avoid ALL processed foods and try my best to reduce stress.
- I stay home as much as possible
- And November 2020 who is going to have a proctocolectomy performed with an ileostomy bag. I’m at a wonderful doctor at Yale New Haven who is working with me to save my colon. She also found out I was severely under medicated. She increase my Humira and I inject once a week. I also take 5 mg prednisone and I’m on Eliquis for two blood clotting disorders. I do take a multivitamin, C, D & zinc. Since my increase in Humira and November 2020 I have not had a flareup. Even when I was diagnosed with Covid and developed double Covid pneumonia. I believe the steroids that I was on and was prescribed during Covid helped with any flareups that were going to occur. I’ll keep you posted on my upcoming surgery were they are going to try to remove a portion of the lining where I have high dysplasia.
- I’ve been in an awful flare (w/ recurrent C diff- ugh) for 8 months despite medication and diet changes, so I’m not here to offer advice to STOP a flare. However, what does bring me comfort when things are really painful is a PHENOMENAL heating pad that gets hotter than any other I’ve ever tried. It’s from Thermophore- I recommend purchasing directly from the vendor’s website (rather than Amazon). Their customer service is fantastic and shipping is fast. I’ve used Thermophore heating pads for decades and just bought a backup in case the one I’m currently using- which is 10 years old- conks out on me.
- I have had UC since late 1982 (40th Anniversary in 2022). My main “game changers” are rest, real rest, like sleep 12, 13 hours if need be and positive affirmations. I work hard to visual myself as strong and healthy
- When I have a flare up I try my best to eat a low residue diet and see medical advice ASAP. I also try not to eat when I know I need to leave the house and eat small meals when I do get hungry.
- -probiotics Visbiome, S. Boulardi by GI pro health -SCD diet -psyllium husk fiber one tspn per day in water -Energy healing/Reiki -Affirmations – “I love and accept myself, as I am” and “I release the past with love, I am free, I am healthy, I am vibrant and I am strong”…and “it is safe for me to exist, I am loved by life itself, all is well.”
- I go straight to chicken noodle soup with lots of olive oil, chicken and carrots. My body has also reacted better to mesamaline (spelling) enemas more than prednisone which I hate taking. If and when my next flare-up occurs I will try the enemas only as my colitis is mostly in my colon. Hope this may help someone! Jaydee
- I don’t know that I’d call it a game changer, but when a flare starts, I up my meds a little (extra mesalamine ) and start a diet eliminating all of my possible problem causing foods. Things like salads, raw veggies and fruit, chocolate and dairy are gone. I stay on a very bland diet with only anti inflammatory foods. I have been so very fortunate that my UC has stayed mild/moderate for the last ten years and even my worst flares have only lasted about six weeks. Flares are mainly caused by seasonal temperature changes and traveling, which I’m no longer comfortable doing. Even when not in a flare I am careful with my diet. I eat gluten free and add olive oil as it is anti inflammatory and eat things I like in moderation. UC has caused enteropathic arthritis but so far the mesalamine is keeping that under control as well. I do have a tough time with fatigue, flare or not and take extra B12 for it. I can’t say it really helps. I’d love to know what others do for fatigue. A big thank you to Adam for starting this group. I had never heard of UC till I got it myself, and it has made me feel not so alone.
- SCD diet. Lots of yogurt and probiotics.
- Bone broth (homemade or store bought bone broth with protein) diet with water and cold pressed juice /natural juice for 3-4 days. No solids. No added sugars. No preservatives. This has helped me get out of a flare. I also do this throughout the year if I have not been eating well as a reset.
- Gluten free vegan diet to keep things moving and allow colon to heal. Animal protein plus veggies can create a bit of obstruction to our intestines. Mesalazine enemas for a few days to cut the the flare.
- Clipper (steroid) has worked in the past for short term relief but going on to Vedolizumab was the game changer
- Find a good gastroenterologist. I’m lucky I have one. No one should continually go in and out of a flare. Especially if they are on pharma. Become informed as to what you are taking. Full communication with the doctor is vital. Remicade turned against my body and I had drug induced lupus. My doc did a correction and now I can’t say enough about Entyvio.
- I have been on infliximab infusion and Azathioprine since the age of 17. I have been in remission ever since apart from the bloating in my tummy and the visits to Hospital for the infusion, I forget that I have UC.
- Chicken,fish, egg whites, any white rice, plain rice cakes with peanut butter. And no sugar.
- I immediately go on a low residue diet. I like to call it the white diet since practically everything I eat is white. I stay away from anything with fiber, drink lots of water and green tea. Sometimes this works and other times it doesn’t. I have now been on Entyvio for about a year and am in clinical remission. I actually feel like a normal person. I feel very lucky that it has worked for me. I’ve only had one flare (last spring) since beginning the infusions. I was able to take the meds I was on before starting Entyvio (Delzicol) and they helped manage the flare and bring me back to normal.
- As I follow the SCD diet most of the time it’s back to basics. Also increase medication (mezalasine) both granules and suppositories and try not to stress about it. Trying to come off meds but bleeding starts after a short time when I taper and stop meds. Inflammation test result was 244 this week so maybe I’m being unrealistic in my goal to be medication free but I’ll keep trying.
- About 2011 after several years I had a flare up. Unlike the previous 40 years it did not respond to ASACOL. My dosage increased to 6 x 800 mg of ASACOL and a salofalk enema daily which gave me flare up every 10-12/days. In 2018 I was diagnosed with type 2 diabetes with food management as treatment. In my classes on management they stressed small, frequent meals. Doing this I was able to reduce to 2x 800 mg ASACOL as maintenance. I’m into year 4 and absolutely delighted as frequent previous attempts had been unsuccessful.
- I go on Prednisone when I have a flare. But I haven’t had a flare for 6 years. I’m in remission using methotrexate for my severe pan-colitis!
- I use an herbal supplement called Seda Crohn it’s made from worm wood, which affects the body in a similar way as Remicade. I was on Remicade for a few years, but was having some side affects. Switched to Seda Crohn and have had good success with it. Still have occasional flare ups – usually due to stress and poor eating habits. If I live well I do well, but sometimes it’s hard to eat clean. I also use turmeric daily.
- The one thing I’ve done that has been successful for me is to control my meal portions. More fruits and less gluten. I eat mostly what I want just less of it.
- Haven’t had a flare in 4 years, but when and if I do: bone broths, simple clean food (I am ALWAYS grain-free) few weeks of oral prednisone, cortico rectal suppositories, glutathione and B12 IV drips at my doctor office, sleep, rest, minimize stress as much as possible, lots of sunshine, daily walks (no intense workouts) Good luck everyone and curious what your strategies are!
- I had been doing counterstrike with steroids. Now that my guts are entirely cut, I have a new better, and free life. Strongly recommend surgery.
- I immediately go to a super bland, low fiber diet. Rice, eggs, chicken, well-cooked vegetables. Very little seasoning and nothing raw. As things calm down and even in remission, soluble fiber is easier than insoluble for me.
- I make sure I am taking my medication and change my diet. Recently I have been triggered by nightshades (peppers, tomatoes, etc), spicy foods, and salad.
- After suffering for years, I decided to analyse what had caused the problem. I narrowed it down to a destruction of my gut fauna, in particular, Bacterium F Prauznisi, this bacterium produces a substance called butlyic acid as it digests hard fibre within the gut, it accounts for between eight and twelve percent of the overall gut fauna, and, butlyic acid acts as a calming agent to the lower bowel, after the pudenic nerve. After research I found that non pasteurised goats milk (a goat, or buffalo is a ruminant grazer, with high concentrations of both butlyic acid, and F Prauznisi in their fresh milk) would be the ideal remedy to my colitis. This bacteria is both oxygen, temperature, and acid sensitive. So I prepared my gut by drinking ordinary cows milk to neutralise the acid, then drinking fresh, warm goats milk, only minutes old. There was a very messy reaction after about four hours, and after that? No.problem, no blood, no flare up’s, and back to normal. I believe my problem was caused by prescribed anti-biotics. It was bad, was going to lead to a colostomy bag, and is now resolved completely. Viva F Prauznisi!
- Having been diagnosed in 1982….with quit a few long running flares, finally around 2014 my doctor put me on Mercaptopurine because my platelets were through the roof. Once I was on it and it brought my platelets in the 300 range I have enjoyed good health. Mercaptopurine is generally covered by insurance and I have paid between $0-$12 for my Rx. A simple 50mg pill.
- I go on a bland, low fiber diet and eat bananas, avocados and toast etc. I also take more probiotics. Then I try to rest more and decrease my stress levels. If those things don’t work, I go to the gastroenterologist and they usually prescribe me steroids for a couple of weeks.
- I haven’t had a flare in years but if I did, I would go back on a strict SCD diet. That plus Vedolizumab is what cured me in the first place after many years of suffering.
- No Diary or meat and I have no problems
- Get more sleep, exercise, and follow the SCD diet strictly until I feel better.
- I do a quick evaluation first. How am I doing on the following things: sleep, diet, water, meds/supplements, and stress? It is crazy for me to think that I can go without sleep, don’t take my supplements, eat a crappy diet, and stress out my body without having consequences. Typically if I get those things back in order, my body heals and I’m good again. To give this context, I have a mild case of UC, was diagnosed four years ago and for the past 3.5 years, I’ve been eating a paleo diet and under the care of a functional medicine doctor. I take a long list of vitamins and minerals in addition to a very low dose of sulfasalazine. Thanks for bringing together UCers all over the world to support and encourage one another!
- At the very start of a flare, I’m always shocked by the onset of crushing fatigue and breathtaking sharp intestinal pain. Funny how I remember how bad the pain is, but it still surprising when it comes back. So, I usually email my gastro doc who after 20 years is like a friend. Then catch myself subconsciously and deliberately avoiding many foods. No more fresh salad. Spicy food burns more in it’s way out when everything is already ulcerated. For me, one clue I’m about to flare is I cannot get comfortable in bed and fall asleep. I think, it’s because my gut is starting to get inflamed but not enough to hurt. And with pan ucerative colitis when my large intestine is swollen, laying down is uncomfortable. Of course, by the time it’s really hurting, it doesn’t matter if I’m reclining, prone, sitting, standing. It all hurts. When it hurts its worst and my joints are also crying out in pain, I imagine laying in a cloud. In my imagination it’s not wet but the perfect temperature, cooling to the touch but not cold. My cloud is supportive and malleable so I can fluff and smush it just the way I want and it holds its shape. This let’s me perch upon it however I want so I can watch tv, read a book, mess around on my phone, work on my laptop. I should add the ability to travel to my cloud so I don’t have to ride in a bumpy car when flaring.
- Take medication as I should lower dose if things are ok. If have a flare up then put medication upto what it should be and if still no joy give the gastro nurses a call and if needed get bloods done and get steroids if needed. Probably tend to have constipation rather than a flare up
- I up my medication and try to have one or two days of smaller portions, low-residue food. In particular, it seems to help me to have a kind of “circuit-breaker” – one day where I will mostly drink vegetable stock and maybe eat a piece of bread or a small bowl of rice.
- Simple non-processed vegan vegetarian diet with herbs (boswellia, curcumin, golden seal, echinacea, propolis. Also Vit C & D), naked sunbathing helps a lot if pains increase. Have managed to avoid a flare for few years now. If symptoms increase I skip the night meal and just do 2 meals, do more sunbathing and try to destress. Also have found small 100ml enema’s with slippery elm powder, marshmallow root powder and comfrey root powder to be very soothing and healing. Not doing any meds. Greg
- My UC condition is located in the last 10 cm of my lower colon, and I was diagnosed with it about 4 years ago at age 60. I take two 1.2g Mesalamine Delayed-Release Tablets every morning. When a flare occurs, I take a 4g/60ml Mesalamine Rectal Suspension Enema before going to bed – not a pleasant way to end the day:( Usually within the next week or so the flare will subside. These meds are very costly especially now that I’m on Medicare. I would welcome trying another method of treatment that would keep my UC in remission for a longer period of time. Sean from Stuart, FL
- Watching your diet and having a positive attitude!
- I usually try a three day regimen as follows: Day 1, I make a big pot of chicken soup but only drink the broth for the first day and make little meatballs (ground beef, salt, pepper, oregano) which I fry in a frying pan with olive oil. I may also have plain scrambled eggs. The second day is pretty much the same with added SCD yogurt. The third day is the same but added in some sauted spinach (with olive oil), baked apples with cinnamon and stewed pears with cinnamon. IF that doesn’t work, I usually coordinate with my GI and do a two week nightly hydrocortizone enema followed by a two week taper of it. i know, i know, its a steroid but the rate of absorption is much better than if you do a prednisone (tablet) taper and I have found it often staves off a more serious flare.
- Have not had a flare in long time (8-10 years) since starting Biologics (Humira, and then Inflectra) . Prior to Biologics, the only thing that would work to stop a flare was Prednisone (tried the mesalamines, balsalazides, diet changes, suppositories, several other things that did not work to stop a flare). I was prescribed Prednisone on and off for more than 10 years until got put on Humira. Humira completely ended the flares and I could lead a normal life. But after 3 years or so I had a flare and got a test which showed my body had built up antibodies to Humira. So my Doc changed me over to Inflectra which also has 100% eliminated any flares, along with Methotrexate supposedly to keep me from developing antibodies to the Inflectra. I pretty sure the steroids did some serious long term damage to my bones, cartilages, tendons, and muscles, as I’ve developed pretty severe arthritis, tendon, and nerve pain and damage. I’ve seen many doctors, Rheumatologists, nuerologists, etc., who have no answers or reasons and no remedies. They all tell me it is normal Osteo from wear and tear but I know that it is all related to my Colitis inflammation flares and the prescribed steroids to stop them.
- After 25 years of suffering with UC and taking steroids, Pentasa and Azathioprine for 14 years my health was deteriorating not just from the UC but also side effects of the medication, the penny dropped and I realised it was diet related, came across the SCD diet, that was 8 years ago, spent 2 years being super strict with the diet then gradually introduced some foods back into diet, rice, potatoes, wine etc the only thing I still won’t eat is any wheat products as I feel that is the one food that damages the gut wall, the flour that is produced now doesn’t allow for the gluten to be broken down properly. I also came off all my medication within 2 months of starting the SCD. I have learnt that the only way forward is to heal the leaky gut through diet. Thank God I found the SCD Picture of health now????
- I take a regimen of Lipo NMN, Lipo Resveratrol and Lipo AKG from Alive by Science; these definitely reduce inflammation (I take these on a daily basis, regardless of whether I’m flaring or not). Also, I take probiotics 3 times/day (Swanson 66 billion CFU), and if I have a bad flare, I’ll take VSL3 DS. Gastrazyme by Biotics also helps. If I have excess stomach acid, I’ll take some Prilosec, but I don’t take it every day; too many side effect possibilities. Finally, the Calcium tums (Walmart or Kroger brand much cheaper) help with excess acid also. Greg kelso
- Step back, slow down, relax, eat bland food and know that better days are ahead.
- Drip Drop for hydration
- I cut down on my dairy and have no acidic drinks or alcohol. I also use the prednisolone foam and this cuts down on the bleeding.
- Canasa suppository can be a game changer for distal colitis during a flare
- Organic bone broth. Omega 3 oil. High dose Vitamin D. 16:8 eating pattern (ie nothing eaten between 7pm and 11 or 12 following midday) to rest gut. Multivitamin (Floradix tablets work for me) Fruit smoothies/blended veggie soups to rest gut. Avoid dairy, sugar, caffeine, alcohol. Lots of rest. Block out everything stressful (including my mother, mother-in-law etc, sorry!). Pray and read God’s promises in the Bible, ie meditate on things that bring peace and lift me up.
- In the past I have been put on courses of steroids which I do not think are good for you but they did work when I was having flare ups just took a while to kick in. for the past 3 years I have been having infusions of infliximab every eight weeks and my UC is in under control the biggest problem I have is bowel incontinence hope this helps
- Stop eating…restart with liquids and bland food and make sure to have extra underwear and pads in hand…pray I don’t have to restart prednisone
- Stelara has. been a tremendous, also, I stopped eating dairiy (except for ice cream) I hope this helps someone
- I follow Medical Medium Anthony William and he says Colitis is a non rashing form of Shingles so I follow his protocol which is a list of things of avoid eating as they feed the virus and including supplements and vitamins. So in I flare I take a large amount of L Lysine approx 4g for short periods and I eat mainly steamed potatoes and other veg, the rest of the time I take zinc, vit c, oil of oregano, turmeric, cats claw, propolis, liquorice, alpha lipoic acid, nettle tea, Chaga, B12. If I’m flaring because of bad bacteria I take Sovereign silver and maybe raw garlic.
- watch what I eat
- Stress Management! I don’t mean formal stress management. I’m referring to knowing your body and giving it what it needs. Be true to your feelings. I have small flares when I let stress get the best of me. I’ve found that sometimes I need to remove myself from situations that are causing me inner strife and then tend to my healing through self nurturing and loving support from those I trust. I nurture myself with healthy foods and vitamins; gentle exercise; supportive people to talk to; doctor visits; plenty of sleep, and the company of my sweet dog.
- SCD diet. Not totally followed after a couple years went back to normal diet haven’t had a flare in 6 years also did a food clearing not sure which did the trick make homemade yogurt every day have 5 tablespoons for breakfast
- Manage anxiety/stress with antidepressants, eat high protein low carb, TAKE YOUR MEDS, start steroids at very very first symptoms of flare, SLEEP, TELL PEOPLE NO!!!!
- Qing Dai – Indigo Naturals 1000 mg, That was my game changer I felt a flare coming on like every year and was just tired of all the meds not keeping me in remission and I follow a strict low FODMAP diet, currently on Humira, Mesalamine and Rowasa. I read PubMeds all the time looking for new meds and natural solutions for my UC and came across a study that stated a reduction in inflammation and better quality of life in close to 80% of the patients in the trial of this natural herb used in Chinese medicine. this has made a huge difference for me and now I’m wanting to get off some if not all of my other meds.
- My UC game changer is Humira. No more UC flares. No more symptoms.
- Intermittent fasting
- Drugs are the ONLY thing that has got me out of a flare!
- I automatically change my diet. I follow a strict SCD diet, drink even more water than I already do and try to stay active and busy within my home (I tend to stay home when flaring ).
- Three words : Specific Carbohydrate Diet
- I have to give two answers to this question. The long-term answer is that Entyvio pretty much stopped all my flare-ups. I’ve been on it for two and a half years now and haven’t had a flare in all that time. It is a miracle drug. The short term answer, which I used pre-Entyvio when my regular meds were not working, was Cortisone Enemas. These worked great. One good squirt at night and I would be guaranteed to have a not-so-bad day the next day. I still like to keep an active prescription on hand, just in case. My GI doc says he has one patient who uses that as a long-term strategy and it works just fine.
- I take chicken soap, cooked egg, and Banana for solid food until I feel better. Then I added some rice with chicken. For drink, I only take water and black tea with Honey nothing else. I also take vitamines like B complex, D, C, Zinc.
- Mainly try to stay as close to SCD as possible. Extremely hard to be very strict with it. Unfortunately, I tried 6 medications and am currently on Zeposia. I have felt good with no flares the last year and a half but am scared to go off of medication. My doctor had me meet with surgeons after I failed on my last medication as he thought I was out of medication options until Zeposia was approved for UC late last year.
- Stelara has. been a tremendous, also, I stopped eating dairiy (except for ice cream) I hope this helps someone
- I wish I had a game changer other than medicine. HUMIRA for me has been a game changer! My goal is to figure out diet, and managing stress all of which and exercise we all can not live without I’m on Humira In the past if I had a flare I would immediately get approved for a steroid like budesinide. Unfortunately this only stopped the flare, but wouldn’t prevent another flare from coming back.
- SCD diet both to get out of flare & maintenance. Other things, fasting, figure out those few foods that I can eat which help my body to rest and heal.
- I have been taking Magnesium and vitamins D daily and it has helped out a ton. However if I feel like I’m going to have some issues I also take coconut activated charcoal. Been doing pretty good for the last year.
- I cut out my little cheats. Bread, small piece of dark chocolate and bean chips and rice cake crackers. I go back to the basic and eat lots of chicken soup, puréed carrots, soft, butternut squash and homemade applesauce. I eat lots of protein and Egg whites everyday for breakfast. Of course, I had to go on two different times of hydrocortisone enemas, Lialda and Entyvio. I am on all three now and staying as strict as I can with what I am eating. I am not 100% yet but I am close to remission again but I have to stay on a form of medication and probably Entyvio or another biologic. I have Ulcerative Proctitis and it is very hard to treat the GI doctor says.
- My game changer was the carnivore diet. Fruits and vegetables (cooked or raw) do not promote healing of my colon. Eating meat and organs stops my flares within days, restores my blood markers and allows me gain muscle weight.
- 5 years into remission, I found out my husband was cheating on me. My temperature sky rocketed when I found pics, I collapsed and fell to the ground, threw up, and didn’t eat for 2 months. UC flare then started (most like due to lack of nutrition), I then bled for 4 months, was put on steroids for 2 weeks, went for a colonoscopy, the bleeding stopped a few weeks after my steroids. UC Game Changer? 1. Avoid stress 2. eat, no matter what, eat.
- Up the prednisone, but always hesitate doing so.
- Diet and Exercise, with probiotics
- Remicade :)
Below is a breakdown of how many participants and which countries they came from for this survey:
Thank you so much to everyone who has shared your ulcerative colitis game changer in this survey.
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That’s all for now folks. But on behalf of the over 3 millions users of this website since it was created back in 2009, may your lives be better off in some big and small ways because of your relationship with UC. This disease is a nasty one, but by no means is it the end of life. I’m just one of the UC’ers here on this planet, and since it has been quite some time now… I’m going on year 43 soon and had UC since I was 28… it is safe to say that more than half of my most memorable life experiences are post-diagnosis. And I can feel there are still many yet to come. Keep your heads up. My Game Changer would be trying my hardest to remove activities and interactions that are stressful. And by stressful, I mean activities or even relationships that cause too much frustrating thinking to make decisions. Also, I try to avoid situations that cause prolonged indecision… Stalled circumstances. “Going nowhere fast” scenarios. And… regulating the heck out of alcohol. And going to bed before 11pm as much as possible. No need for me to be awake til the wee hours. And of course, when things seem like they may be taking a nose-dive, I pull back on almost all carbs and go on a meat and veggie diet. Finally, the sun, getting direct sunlight on the body and face often. I believe we are all similar and of course different.
Thanks for being a part of the site, I enjoyed reading your responses, and more to come,
I started site shortly after being diagnosed in October of 2008 with severe pancolitis (when my whole colon was inflamed).
For me, it was a very rough start with severe symptoms. Getting bounced from medication to medication was not easy or too helpful. But, I did meet another UC’er, changes several parts of my diet, and of course the rest is history.
Leave a comment, ask a question, take advantage of our past experiences here, use the search boxes, they are your friends to0:)
I’ve written 2 different ulcerative colitis ebooks, you can check them out here.
And, the Free eNewsletter, which has important updates can be joined here.
You do such good work for we U.C.rs.
It’s challenging reading all of thee comments, reliving those years. I was 2011
The book I wrote to help others is here on your site. I have no idea if it helped anyone. My feeling after getting so much help, from wonderful people who had healed, compelled me to give you this book for your readers.
SCD is so important. I’m sorry many do not understand that when you are bleeding you can not have “a little”. ..no grains at all, no sugar, no oats, no rice. As she says, a little bit feeds an army…these bacterium have been here since the beginning of time. They can shapeshift and change everything about themselves. They are adaptable to any new environment. Elaine says “you must cut off their food supply…starve them out. They need sugars to live…anything the body will turn to sugar… naturally occurring sugars are fine ie. fruit and vegetables. I stuck to this way of eating and thrived and eventually healed.
I haven’t had the vaccine. Health concerns on my part.
Is there any place on your site I can go to to see how people did with the vaccine? I tried but couldn’t find my way. I’m not all that familiar with roaming sites….not my strong point that’s for sure.
Lastly, I must say my heart goes out to all. Please be open to new ideas especially if you are suffering. I almost passed a few times. You get so weak and can lose your Spirit.
Thank you Adam! Very supportive survey. God bless you and best wishes for all.
I get more beneficial information from this site than I’ve ever had from any GP or Gastro in 9 years of having UC! Experiences count for everything and there’s always something to take away. Adam keep up the amazing work, you provide hope to do many.
Cheers and beers (if only!)
Amen to that!! I agree. And I love that while everyone embraces the idea of Meds that a lot of people try other methods also.
I am so thankful for this group! I went to a different doctor that I’ve known for over twenty years. She started me on a round of Solu-Cortef (low dosage) and IV Hydration Treatments today to be repeated for the next 7 – 10 days. It only took 45 minutes. Breezed right through it!
Hoping and praying for remission. Will Keep you posted as to how things progress.
Blessings to everyone,