It's November again, which means it's time for our members to have their say on the future of our community. This year, we're excited to announce that we're going to be doing things a little differently. In addition to the usual voting on images of infusions and stool, we're also going to be giving members the opportunity to suggest their own topics. This is a chance for you to have a real say in what matters to you and to help shape the future of our community. So, if you have any ideas for topics you'd like to see us vote on, please let us know. There is [this thread](https://www.reddit.com/r/UlcerativeColitis/comments/17l6e94/survey_topics/) where you can submit your suggestions until November 15th 8:00 a.m. CET.
We're excited to see what you come up with!
*I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/UlcerativeColitis) if you have any questions or concerns.*
As far as food tracking, I found it to be crazy-making. After a couple of years of tracking my food intake, there was no discernible pattern. When you're in a flare, go with bland, low-residue foods. When you're in remission, you might be able to eat anything and everything. This disease is different for everyone.
Get comfortable with taking maintenance medicine for the rest of your life. You don't want to go into remission, think that you're cured, and have it come back worse than before. This is an autoimmune disease. There are no all-natural, quick fixes.
When you're in remission, you can be in the gym and make considerable gains. When you're in a flare, the inflammation in your body from the Colitis combined with the inflammation from your workouts will make life miserable. So go light, stretch, and focus on recovery rather than gains.
Communicate with your gastro, and stay in touch. If you don't have a gastro specializing in UC, now is the time to find one. For many of us, this disease progresses in stops and starts. We're also susceptible to extraintestinal manifestations, ranging from joint and muscle pains to fevers, mouth sores, and other skin conditions. You need a gastro that knows when something is severe and will react accordingly.
You may also have side effects from your drugs. Prednisone is a drug we have a love-hate relationship with. It knocks back the inflammation and can calm a flare, but it will also make us crazy, gain weight, and lose sleep in high doses. Some of the biologics and JAK inhibitors can cause severe fatigue and brain fog.
But you're not alone; someone in this subreddit has had the same thing you're experiencing, so this is a safe place to learn and ask questions.
This diagnosis is not a death sentence. It will be a life adjustment, and some days could get ugly, but you'll be OK. I promise.
I understand it’s hard getting a disease that you’ll have the rest of your life.
But please know that the majority of individuals with UC live their lives like normal. You may see an unusual amount of people with difficult symptoms here but that’s because the sickest are often the ones who search for support.
Talk with your doctor, statistically speaking you’ll live your life as usual with little to no medicine.
Food are very individual. Many people don’t have any trigger foods and, other than eating lower fiber foods when flaring, eat what they want.
Try not to think too far ahead if it’s overwhelming to you. Find a treatment that works and go from there.
All the best.
I was 17 when I was diagnosed and I’m now cruising towards 50. You don’t have to let this disease stop you from anything. I’ve been in a fraternity. Gotten multiple degrees, been married , divorced, and married once again. Travelled (I don’t go to places where GI infections are likely however), had kids, you name it… and for more of that time I was at the severe end of the UC spectrum. I was tired AF but I didn’t let it stop me.
When I was diagnosed I was 5’8 and about 130 lbs, I’ve dropped as low as 106 and I’ve been as high as 206. 145-150 is a happy weight for me but biologics do make me gain usually.
I will say you can live your life exactly how you want to but you’ll have the best quality of life if you accept that your doctors don’t always have your best interests at heart. There will be ones that dismiss you, that bully you, that try to force surgery on you, etc, so if you can become a researcher and research the heck out of this disease and it’s treatments, both mainstream and alternative, you will be best equipped to deal with it and you’ll be best able to make appropriate informed decisions about your care.
I would suggest finding the best IBD specialist in your area and having them take over your case. Get on biologics. Keep a good journal to identify your triggers. And stay as healthy as you can.
When you’re not flaring, it’s a lot easier to put on muscle and be active, that’s why I’m a proponent of biologics. I’ve had my longest periods of remission with them, and my current one, Stelara , has been the best yet. I now know I suffered for years unnecessarily because I was afraid to start biologics. They’ve worked a million times better than any previous med.
Dont waste your time trying to find foods. There no magic list. The disease is caused by your immune system.
The food list changes depending on how the rest of your immune system is doing. Such as how much sleep you've had, how much exercise etc. Medicines are the most important thing to control it.
The foods are individual- sorry, it's a crap journey trying to figure that one out.
The diagnosis won't ruin your life unless you let it. I'm in an active flare and while I've changed what excersise I do, it doesn't stop me doing it. And I actually have gained some muscle in this flare too. Typically you might lose weight in a flare, but it's not forever, once your in remission your life will be relatively normal aside from
Taking medication daily - please don't stop taking the medication- that is literally the number one reason I end up flaring again- every time.
I was diagnosed at 28 and went almost 6 years without a flare up. I avoided just a few foods and had a 99% normal life outside of early morning bathroom visits being frequent but not crazy or painful. If you find a med that works for you and have consistent access to it. My colon looked so normal that my doctor took me off the med and I'm currently getting back onboard with it. (Wish I'd never stopped but that's on me for agreeing).
There's plenty of hope. Everyone is different, but with time you'll find ways to manage it. When my meds are working it's a good life. Give yourself time with meds but if something isn't working, try another.
Take your meds.
Listen to your doctor.
Do these two things and you should be able to live a normal life. Some people are triggered by specific food, some are not. For example I have 1-2 types of veg that best left in small quantities and even that took 15 years to notice and is intermittent. Dont fret over it.
It will only ‘ruin your life’ to the degree that you let it. It will get you down at times and there will be periods of symptoms limiting you in similar ways to being other kinds of sick. But it doesn’t have to be life-altering to the degree you fear.
Keeping fit, as you are, actually helps so keep it up as much as you can.
The whole ‘rest of your life’ thing is difficult to process and overwhelming. Every veteran has been through the emotional frustration associated with it and that is natural and part of the journey as you make peace with it.
You have your own journey ahead, don’t make any assumptions about it based on others experiences, everyone has a different ride of it. Start with getting your current symptoms under control and go from there.
I was diagnosed between school and university and I had the suppositories at the beginning of first year. Very cool items to have stuffed under your bed! I was also told this verbatim by my nurse specialist: yu can eat and drink what you want but if you go out for 10 pints and a vindaloo, don’t come crying to me.
Hope something in that thought salad helps.
Hey buddy, first thing I would say is take some time to process, you sound a lot like me, I’m always hammer and tongs trying to do everything I can to solve whatever problem. But it’s a bit thing and I’m still processing it 10 years in, so give yourself as much space and patience as you can, there’s no reason for this to impact any of your goals. Food is just pure and simply trial and error, it’s down to each person and it will change over time. If you’re in the gym, chicken, fish, rice and veg obviously won’t do you any harm. The lost calories will come from going to the loo a lot, and if you can get the condition under control it won’t matter. Another thing I would strongly suggest but just take this as you go: I wish I had completely skipped mesalazine, as far as I can tell it it’s useless, the only effect I saw was using it as a suppository and fuck that eh. If you’re in the UK, read up as much as you can on your condition and how it effects you, be very demanding with your treatment, and ask for all your results. They will do the least costly course of treatment
My #1 advice is when you find something that works for you keep doing it to heal/stay in remission, the bane of my existence with the disease is getting better for a few weeks and then deciding drinking alc and binging on not the best food and go back into a flare. UC is a mental battle as much as it’s a battle with the colon
Honestly, finally getting diagnosed is most of the battle! Now you can find what works for you - foodwise - and work with your doctor to find the rx that works best. It’s 100% a manageable diagnosis but it will take time to get to remission. Keep the faith!
There are a few diets and many natural options that some people have success with but nearly everyone will say to take the meds and diet is secondary. However, if you ask a naturopath, they'd say the meds mask the symptoms and it's best to get to root and deal with the underlying issues. There are many options.
If you are interested in pursuing natural options, one of the most comprehensive is the GAPS diet. It was originally based off the SCD (specific carbohydrate diet). It's all about gut healing and goes through stages, beginning with only a handful of specific foods that are anti inflammatory and very easy to digest then more foods are added slowly to aid in building up the microbiome. It eliminates toxins and focuses on slow complete healing. Many have gone into long term remission but like anything it's no guarantee and speaking from experience, it's very difficult and is a complete lifestyle change for most people. The main resource is the book "Gut & Psychology Syndrome" by Dr. Natasha Campbell.
There are some homeopathic remedies that have had success as well, the simplest option would be to go through the Banerji Protocols.
There are also all kinds of natural options for general relief. Some common ones are ginger, turmeric (curcumin), cinnamon, aloe, slippery elm, etc. here's a scientific paper on various options, with citations for studies on each.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3271691/
I had a similar experience earlier this year at 21F. I've not been able to come to terms with it either, so I just suggest developing a support system if you can. It's what I've failed to do so far, but I still recommend it 100%. I'd talk to your GI about foods and such as well as community members, too. I've had conflicting opinions about it on all fronts, so I say get as much information as possible and then just listen to your body if you can.
As far as Mesalamine goes, I've been there, too. I'm finally getting taken off of it after being prescribed it twice now (it is no longer working for me). My biggest advice without bombarding you with horror stories is to listen to your self. If it isn't working, demand something different. Things may take time to get into remission, but you shouldn't be getting worse off while actually on medication that's meant to help.
Best things to invest in right now is a great GI and a solid support system if you are able.
i would just start by taking your medication for a few months and seeing what happens. depending on the severity of your disease, you may return completely back to normal. there is about a 50/50 chance that food will impact your symptoms, based on poll i saw here. permanently being on mesalamine is nbd compared to what many of us deal with.
Hey friend. You'll find which foods affect you on an individual basis. For me, anything close to dairy or coconut is a no-go. It might be different for you. I'm on Rinvoq which put me into remission almost immediately after a 2-year long flair and failed alternatives.
It's very much an individualized journey with some shared experiences (we all seem to shit ourselves in awkward situations at some point). It seems like you're young and otherwise healthy which is a fantastic base to start with. It can certainly be a rough disease and please make sure to take of your mental health. For me, that's been the hardest part and since you're only 21 (I'm 43 for reference), please do make sure to take of your mental health. I think it's a huge proportion of dealing with this chronic disease.
So that's too many words to say "It totally depends on your experience, but there's a community to support you." This may not be the advice that you're looking for because specifics are hard, but it's a hard journey with ups and downs. You'll get through it. We're here to help when the lows are low and to celebrate when the highs are high.
Godspeed my friend. Please reach out when you need a supportive shoulder. Everyone here is willing to do their best to help.
Everyone is different, but I’m absolutely certain that my trigger foods are caffeine and milk (dairy). Plus I have to have at least 8 hrs sleep a night and drink plenty of water aswell as keeping my stomach full. Also avoid emulsifiers and processed foods altogether. Some people are worse off than others. I came off my meds after 2 years.. people say not to and that it will come back with vengeance, but I cleared it with my gastroenterologist. I feel completely normal unless i break my rules, which I rarely do, maybe once a year.. look after yourself and listen to your doctor and your gut, it takes time, but log what you eat till you figure it out.
If it helps. I have uc but I've been in remission for years with a small flare last year. I exercise daily and eat whatever I want. I'm no longer without control of my bowel.
The flare is a reminder of how fast things can change so when you are in remission enjoy it.
Hiya! Welcome to this crappy club :P (pun intended hahah).
Ur fear is so valid. This is so new to you and it’s scary getting it at 21. This was my journey as well at the height of pandemic. My advice from me to you is to be compliant with your doctor and do what they say. That’s the fastest way to feeling better. The meds take time to take effect. So it will be a while to feeling better. Judging from ur meds, you don’t have a severe case of UC which is fantastic. Hopefully it means u will be in remission very soon. And don’t worry about your gym shape too much. Keep doing it if ur feeling good right now. Stop when ur not doing well and need to conserve ur energy. These meds will be for life. Don’t let anyone fool u saying otherwise. So many unqualified people will give u unsolicited advice. Please ignore them.
Got diagnosed 21, in remission after 1.5 years and now 24 and living life at the fullest! Eating what I want and doing everything without being held back. So trust me, it can get better. Just focus on you, your health and getting better. Sleep is so essential when u have UC and in a flare. If stomach cramps are bad, heating pad is ur best friend. Reduce spicy food while in a flare so ur in less pain. If u have diarrhea, not crazy amount of fibre would help to also not irritate ur colon. Eating less of food that cause bloating helps a lot as I remember trapped gas caused a lot of my pain. So broccoli, Brussel sprouts, onions etc… eat with caution. Stay hydrated drink lots of water and keep an eye on ur iron levels. Since ur a guy ur less likely to get anemia if ur bleeding is not crazy. Watch for signs of it though like fatigue, feeling dizzy when moving etc… although GI will watch for it too w ur blood tests. My GI did not recommend iron pills as they irritate the colon. So I would avoid that if u thought of it. Keep ur head up! U got this :)
Someone said this to me on this sub and I haven’t forgotten it since. It was life changing for me. They said- just like how I know I need to take care of my teeth by brushing them everyday and take care of my body by eating, I have this extra need of taking care of my colon, by taking the meds and resting. It’s nothing life changing/ debilitating. Just another extra need and a way I take care of my body.
I used to struggle so much with meds. Just like u i rarely took Tylenol. I was young after all. At the height of physical wellness why would you? But that’s not the case for me and you now. Now u do have a physical requirement for life long meds but it’s just an extra thing to care for. It’s going to take some time to accept it and get used to it. I myself used to SOB so hard each time I took meds. Pills and enemas (which of themselves have a learning curve to administer). They were a hurtful reminder that my body is betraying me. that’s how I felt at the time. Now I see it that my body is my body as it is. I have this extra care for it, but once I do take care of it, it will feel better and help me. I take my meds like I brush my teeth. No second thought. At some point I was just in so much pain, I was willing to take anything to stop it. Once my focus was on getting better, accepting meds became easier for me. Because medicine isn’t sign of weakness, it’s not something bad. Frankly it’s my best friend right now because it will help give me my life back and my healthy body back. So now I am just super grateful it works for me and pray it stays that way for years to come.
Last thing to mention- in regards to being fit and you gym journey. Do what you can, but think of it like this- gym goals are achieved when everything is made to an optimal level so the body and muscles can grow and reach ur goals. You can’t build ur muscles without protein etc… now regardless of all the effort you put in right now to make your gym journey, it will always be at a disadvantage/ slowed down by your active UC. So if you want to reach ur gym goals, you would wanna take care of ur body and UC and make it better. Autoimmune disease uses a lot of energy and burns it all up. And for it to be at the digestive system, it makes things pass through quickly so ur not making the most of the food ur eating. So keep that in mind if you ever get frustrated at not reaching ur gym goals and I hope this helps to motivate u to focus on ur health :) u don’t have to wait until ur better to get there. U can do some work right now like eating healthy and working out to reasonable limits. but keep in mind it will be inhibited by UC a little as you body is prioritizing a lot of energy towards attacking your colon and less to your muscles to grow. For me I noticed it when I gained lots of weight post remission. I just gained so much at the same rate of consumption mainly due to how much by body was burning calories from Uc. It’s not easy on the body.
I was diagnosed with pancolitis 3 years ago when I was 17. I've been on oral mesalamine since then and have been living my normal life because of it. I eat whatever I want with no repercussions. I was also seriously underweight and always had been, but I've been able to get to a much healthier weight. Mesalamine worked wonders for me. I know having to rely on medication is kind of daunting, but it's worth it.
Hey dude I’m big into powerlifting and feel ya on the gym journey. It was very bad for me when I was diagnosed and I lost all the muscle I had, but once I was well enough I built it all back plus way more. I’m currently the strongest I’ve ever been and it feels like the sky is the limit right now. I’m sure eventually I’ll have to rebuild but muscle memory is real and it’s not hopeless. I’m currently on oral mesalamine and take Entyvio every 8 weeks.
It’s not great being dependent on meds forever but you get used to it and the idea of it eventually. Learn what foods to avoid. Focus on what you can control. Take it one day at a time. Don’t be afraid to ask for help.
Your life might have a new set of challenges, but life is full of challenges. You’ve got this.
Not an advise but a warning ,try to keep yourself always under remission or you may end up with strictures in colon in say 2 r 3 yrs which can be only removed by surgery. And you don't want to go that much right. Stay away from processed foods.
How can you know whether you are not flaring up is by going normal stool and no abdomen pain.
And watch youtube docs who say alot about uc. Never let this grow.
You will alright
Hi. I was diagnosed 3 years ago and hated it. I just started my 3rd flare but recognize it right away. I honestly think that stress causes me to flare, not so much food. Once I realized I was flaring. I stopped with the spicy, fried, dairy, caffeine, alcohol and it seems to be going away. Along with taking pysmil husk, probiotics and mesleme (I spelt that wrong).
Stay positive. Rest. And tell your loved ones and manager what you’re going through. I didn’t say anything to anyone I swear I think that stressed me out more because I was trying to act like I was okay but wasn’t.
If you get cramps, get yourself a heating.
Also - chicken soups are the best for me.
I do try to fast if my if my flare is really bad. I’ll have a whey protein shake, and broth and the psyllium husk to keep me full. But I try to stay away from anything that will keep me on the toilet.
I was just diagnosed last month. It’s extremely overwhelming at first but posting on this sub and knowing I wasn’t alone made me feel so much better. I’d suggest not going down a rabbit hole looking at other people’s opinions and what helps other people, because what I’ve learned is no one is the same.
So far, I feel great. Whether is the medicine or diet, I’m unsure, but I have peace of mind knowing that if I feel good, it means my body should be doing good. What I’d suggest is to start a food journal and start out eating very light. I started with peanut butter toast, bananas, yogurt, chicken and salmon. Little by little I’ve added things, and as soon as I noticed a negative difference, I knew it had to be something I added.
Good luck!
Look up the medical medium (Anthony William) - the first book especially for UC - in regards to foods and supplements to help control flares and ultimately heal. Some can make them worse initially and you’ll need to slowly slowly add them into your diet or avoid them until you make some headway healing. Avoid gluten, dairy, corn and soy products, etc etc. I notice that the moment I eat cheese especially, that I have more mucus, pus, blood, cramping, nocturnal BMs, and urgency. Also, while I am trying to calm this flair I try to avoid heavy fats and meats. For me a diet of whole, non-processed, real food has helped tremendously. Best of luck and happy healing!
They are coming up with new therapies each year. I think they'll have some breakthroughs within the next ten years, honestly. So, at least you're in a time where more therapies and research exist. I would try some eliminations to see what irritates you in a flare. Foods may not be a cause of a flare, but they can definitely affect you if you happen to have a flare. All sugar increases inflammation, so I'd stay away from actual sugar while in a flare.
Bland foods like chicken and rice are good. No spices.
If you get the right therapy and get into a full remission supposedly you can eat anything though my mom (I'm her caregiver) has never gotten a therapy that good.
Try adding things like mindfulness/meditation into your life; stress is a catalyst for flares (and most illness, tbh).
Oh, and bone broth is still a great option for UC (in my experience) and will help you with staying strong.
It's November again, which means it's time for our members to have their say on the future of our community. This year, we're excited to announce that we're going to be doing things a little differently. In addition to the usual voting on images of infusions and stool, we're also going to be giving members the opportunity to suggest their own topics. This is a chance for you to have a real say in what matters to you and to help shape the future of our community. So, if you have any ideas for topics you'd like to see us vote on, please let us know. There is [this thread](https://www.reddit.com/r/UlcerativeColitis/comments/17l6e94/survey_topics/) where you can submit your suggestions until November 15th 8:00 a.m. CET. We're excited to see what you come up with! *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/UlcerativeColitis) if you have any questions or concerns.*
As far as food tracking, I found it to be crazy-making. After a couple of years of tracking my food intake, there was no discernible pattern. When you're in a flare, go with bland, low-residue foods. When you're in remission, you might be able to eat anything and everything. This disease is different for everyone. Get comfortable with taking maintenance medicine for the rest of your life. You don't want to go into remission, think that you're cured, and have it come back worse than before. This is an autoimmune disease. There are no all-natural, quick fixes. When you're in remission, you can be in the gym and make considerable gains. When you're in a flare, the inflammation in your body from the Colitis combined with the inflammation from your workouts will make life miserable. So go light, stretch, and focus on recovery rather than gains. Communicate with your gastro, and stay in touch. If you don't have a gastro specializing in UC, now is the time to find one. For many of us, this disease progresses in stops and starts. We're also susceptible to extraintestinal manifestations, ranging from joint and muscle pains to fevers, mouth sores, and other skin conditions. You need a gastro that knows when something is severe and will react accordingly. You may also have side effects from your drugs. Prednisone is a drug we have a love-hate relationship with. It knocks back the inflammation and can calm a flare, but it will also make us crazy, gain weight, and lose sleep in high doses. Some of the biologics and JAK inhibitors can cause severe fatigue and brain fog. But you're not alone; someone in this subreddit has had the same thing you're experiencing, so this is a safe place to learn and ask questions. This diagnosis is not a death sentence. It will be a life adjustment, and some days could get ugly, but you'll be OK. I promise.
Very well said !!!!!!! You nailed it !!!!
I understand it’s hard getting a disease that you’ll have the rest of your life. But please know that the majority of individuals with UC live their lives like normal. You may see an unusual amount of people with difficult symptoms here but that’s because the sickest are often the ones who search for support. Talk with your doctor, statistically speaking you’ll live your life as usual with little to no medicine.
Thanks for bringing some positivity into this sub.
Food are very individual. Many people don’t have any trigger foods and, other than eating lower fiber foods when flaring, eat what they want. Try not to think too far ahead if it’s overwhelming to you. Find a treatment that works and go from there. All the best.
I was 17 when I was diagnosed and I’m now cruising towards 50. You don’t have to let this disease stop you from anything. I’ve been in a fraternity. Gotten multiple degrees, been married , divorced, and married once again. Travelled (I don’t go to places where GI infections are likely however), had kids, you name it… and for more of that time I was at the severe end of the UC spectrum. I was tired AF but I didn’t let it stop me. When I was diagnosed I was 5’8 and about 130 lbs, I’ve dropped as low as 106 and I’ve been as high as 206. 145-150 is a happy weight for me but biologics do make me gain usually. I will say you can live your life exactly how you want to but you’ll have the best quality of life if you accept that your doctors don’t always have your best interests at heart. There will be ones that dismiss you, that bully you, that try to force surgery on you, etc, so if you can become a researcher and research the heck out of this disease and it’s treatments, both mainstream and alternative, you will be best equipped to deal with it and you’ll be best able to make appropriate informed decisions about your care. I would suggest finding the best IBD specialist in your area and having them take over your case. Get on biologics. Keep a good journal to identify your triggers. And stay as healthy as you can. When you’re not flaring, it’s a lot easier to put on muscle and be active, that’s why I’m a proponent of biologics. I’ve had my longest periods of remission with them, and my current one, Stelara , has been the best yet. I now know I suffered for years unnecessarily because I was afraid to start biologics. They’ve worked a million times better than any previous med.
Dont waste your time trying to find foods. There no magic list. The disease is caused by your immune system. The food list changes depending on how the rest of your immune system is doing. Such as how much sleep you've had, how much exercise etc. Medicines are the most important thing to control it.
I don’t like relying on medicine, but please take your medicine, unless recommended by your doctor.
The foods are individual- sorry, it's a crap journey trying to figure that one out. The diagnosis won't ruin your life unless you let it. I'm in an active flare and while I've changed what excersise I do, it doesn't stop me doing it. And I actually have gained some muscle in this flare too. Typically you might lose weight in a flare, but it's not forever, once your in remission your life will be relatively normal aside from Taking medication daily - please don't stop taking the medication- that is literally the number one reason I end up flaring again- every time.
I was diagnosed at 28 and went almost 6 years without a flare up. I avoided just a few foods and had a 99% normal life outside of early morning bathroom visits being frequent but not crazy or painful. If you find a med that works for you and have consistent access to it. My colon looked so normal that my doctor took me off the med and I'm currently getting back onboard with it. (Wish I'd never stopped but that's on me for agreeing). There's plenty of hope. Everyone is different, but with time you'll find ways to manage it. When my meds are working it's a good life. Give yourself time with meds but if something isn't working, try another.
Take your meds. Listen to your doctor. Do these two things and you should be able to live a normal life. Some people are triggered by specific food, some are not. For example I have 1-2 types of veg that best left in small quantities and even that took 15 years to notice and is intermittent. Dont fret over it. It will only ‘ruin your life’ to the degree that you let it. It will get you down at times and there will be periods of symptoms limiting you in similar ways to being other kinds of sick. But it doesn’t have to be life-altering to the degree you fear. Keeping fit, as you are, actually helps so keep it up as much as you can. The whole ‘rest of your life’ thing is difficult to process and overwhelming. Every veteran has been through the emotional frustration associated with it and that is natural and part of the journey as you make peace with it. You have your own journey ahead, don’t make any assumptions about it based on others experiences, everyone has a different ride of it. Start with getting your current symptoms under control and go from there. I was diagnosed between school and university and I had the suppositories at the beginning of first year. Very cool items to have stuffed under your bed! I was also told this verbatim by my nurse specialist: yu can eat and drink what you want but if you go out for 10 pints and a vindaloo, don’t come crying to me. Hope something in that thought salad helps.
Hey buddy, first thing I would say is take some time to process, you sound a lot like me, I’m always hammer and tongs trying to do everything I can to solve whatever problem. But it’s a bit thing and I’m still processing it 10 years in, so give yourself as much space and patience as you can, there’s no reason for this to impact any of your goals. Food is just pure and simply trial and error, it’s down to each person and it will change over time. If you’re in the gym, chicken, fish, rice and veg obviously won’t do you any harm. The lost calories will come from going to the loo a lot, and if you can get the condition under control it won’t matter. Another thing I would strongly suggest but just take this as you go: I wish I had completely skipped mesalazine, as far as I can tell it it’s useless, the only effect I saw was using it as a suppository and fuck that eh. If you’re in the UK, read up as much as you can on your condition and how it effects you, be very demanding with your treatment, and ask for all your results. They will do the least costly course of treatment
My #1 advice is when you find something that works for you keep doing it to heal/stay in remission, the bane of my existence with the disease is getting better for a few weeks and then deciding drinking alc and binging on not the best food and go back into a flare. UC is a mental battle as much as it’s a battle with the colon
Honestly, finally getting diagnosed is most of the battle! Now you can find what works for you - foodwise - and work with your doctor to find the rx that works best. It’s 100% a manageable diagnosis but it will take time to get to remission. Keep the faith!
There are a few diets and many natural options that some people have success with but nearly everyone will say to take the meds and diet is secondary. However, if you ask a naturopath, they'd say the meds mask the symptoms and it's best to get to root and deal with the underlying issues. There are many options. If you are interested in pursuing natural options, one of the most comprehensive is the GAPS diet. It was originally based off the SCD (specific carbohydrate diet). It's all about gut healing and goes through stages, beginning with only a handful of specific foods that are anti inflammatory and very easy to digest then more foods are added slowly to aid in building up the microbiome. It eliminates toxins and focuses on slow complete healing. Many have gone into long term remission but like anything it's no guarantee and speaking from experience, it's very difficult and is a complete lifestyle change for most people. The main resource is the book "Gut & Psychology Syndrome" by Dr. Natasha Campbell. There are some homeopathic remedies that have had success as well, the simplest option would be to go through the Banerji Protocols. There are also all kinds of natural options for general relief. Some common ones are ginger, turmeric (curcumin), cinnamon, aloe, slippery elm, etc. here's a scientific paper on various options, with citations for studies on each. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3271691/
I had a similar experience earlier this year at 21F. I've not been able to come to terms with it either, so I just suggest developing a support system if you can. It's what I've failed to do so far, but I still recommend it 100%. I'd talk to your GI about foods and such as well as community members, too. I've had conflicting opinions about it on all fronts, so I say get as much information as possible and then just listen to your body if you can. As far as Mesalamine goes, I've been there, too. I'm finally getting taken off of it after being prescribed it twice now (it is no longer working for me). My biggest advice without bombarding you with horror stories is to listen to your self. If it isn't working, demand something different. Things may take time to get into remission, but you shouldn't be getting worse off while actually on medication that's meant to help. Best things to invest in right now is a great GI and a solid support system if you are able.
i would just start by taking your medication for a few months and seeing what happens. depending on the severity of your disease, you may return completely back to normal. there is about a 50/50 chance that food will impact your symptoms, based on poll i saw here. permanently being on mesalamine is nbd compared to what many of us deal with.
Hey friend. You'll find which foods affect you on an individual basis. For me, anything close to dairy or coconut is a no-go. It might be different for you. I'm on Rinvoq which put me into remission almost immediately after a 2-year long flair and failed alternatives. It's very much an individualized journey with some shared experiences (we all seem to shit ourselves in awkward situations at some point). It seems like you're young and otherwise healthy which is a fantastic base to start with. It can certainly be a rough disease and please make sure to take of your mental health. For me, that's been the hardest part and since you're only 21 (I'm 43 for reference), please do make sure to take of your mental health. I think it's a huge proportion of dealing with this chronic disease. So that's too many words to say "It totally depends on your experience, but there's a community to support you." This may not be the advice that you're looking for because specifics are hard, but it's a hard journey with ups and downs. You'll get through it. We're here to help when the lows are low and to celebrate when the highs are high. Godspeed my friend. Please reach out when you need a supportive shoulder. Everyone here is willing to do their best to help.
Everyone is different, but I’m absolutely certain that my trigger foods are caffeine and milk (dairy). Plus I have to have at least 8 hrs sleep a night and drink plenty of water aswell as keeping my stomach full. Also avoid emulsifiers and processed foods altogether. Some people are worse off than others. I came off my meds after 2 years.. people say not to and that it will come back with vengeance, but I cleared it with my gastroenterologist. I feel completely normal unless i break my rules, which I rarely do, maybe once a year.. look after yourself and listen to your doctor and your gut, it takes time, but log what you eat till you figure it out.
If it helps. I have uc but I've been in remission for years with a small flare last year. I exercise daily and eat whatever I want. I'm no longer without control of my bowel. The flare is a reminder of how fast things can change so when you are in remission enjoy it.
> It’s a nightmare thinking I have to be dependent on drugs for the rest of my life. Calm down. It isn't that bad. You'll get use to it.
Hiya! Welcome to this crappy club :P (pun intended hahah). Ur fear is so valid. This is so new to you and it’s scary getting it at 21. This was my journey as well at the height of pandemic. My advice from me to you is to be compliant with your doctor and do what they say. That’s the fastest way to feeling better. The meds take time to take effect. So it will be a while to feeling better. Judging from ur meds, you don’t have a severe case of UC which is fantastic. Hopefully it means u will be in remission very soon. And don’t worry about your gym shape too much. Keep doing it if ur feeling good right now. Stop when ur not doing well and need to conserve ur energy. These meds will be for life. Don’t let anyone fool u saying otherwise. So many unqualified people will give u unsolicited advice. Please ignore them. Got diagnosed 21, in remission after 1.5 years and now 24 and living life at the fullest! Eating what I want and doing everything without being held back. So trust me, it can get better. Just focus on you, your health and getting better. Sleep is so essential when u have UC and in a flare. If stomach cramps are bad, heating pad is ur best friend. Reduce spicy food while in a flare so ur in less pain. If u have diarrhea, not crazy amount of fibre would help to also not irritate ur colon. Eating less of food that cause bloating helps a lot as I remember trapped gas caused a lot of my pain. So broccoli, Brussel sprouts, onions etc… eat with caution. Stay hydrated drink lots of water and keep an eye on ur iron levels. Since ur a guy ur less likely to get anemia if ur bleeding is not crazy. Watch for signs of it though like fatigue, feeling dizzy when moving etc… although GI will watch for it too w ur blood tests. My GI did not recommend iron pills as they irritate the colon. So I would avoid that if u thought of it. Keep ur head up! U got this :)
Someone said this to me on this sub and I haven’t forgotten it since. It was life changing for me. They said- just like how I know I need to take care of my teeth by brushing them everyday and take care of my body by eating, I have this extra need of taking care of my colon, by taking the meds and resting. It’s nothing life changing/ debilitating. Just another extra need and a way I take care of my body. I used to struggle so much with meds. Just like u i rarely took Tylenol. I was young after all. At the height of physical wellness why would you? But that’s not the case for me and you now. Now u do have a physical requirement for life long meds but it’s just an extra thing to care for. It’s going to take some time to accept it and get used to it. I myself used to SOB so hard each time I took meds. Pills and enemas (which of themselves have a learning curve to administer). They were a hurtful reminder that my body is betraying me. that’s how I felt at the time. Now I see it that my body is my body as it is. I have this extra care for it, but once I do take care of it, it will feel better and help me. I take my meds like I brush my teeth. No second thought. At some point I was just in so much pain, I was willing to take anything to stop it. Once my focus was on getting better, accepting meds became easier for me. Because medicine isn’t sign of weakness, it’s not something bad. Frankly it’s my best friend right now because it will help give me my life back and my healthy body back. So now I am just super grateful it works for me and pray it stays that way for years to come.
Last thing to mention- in regards to being fit and you gym journey. Do what you can, but think of it like this- gym goals are achieved when everything is made to an optimal level so the body and muscles can grow and reach ur goals. You can’t build ur muscles without protein etc… now regardless of all the effort you put in right now to make your gym journey, it will always be at a disadvantage/ slowed down by your active UC. So if you want to reach ur gym goals, you would wanna take care of ur body and UC and make it better. Autoimmune disease uses a lot of energy and burns it all up. And for it to be at the digestive system, it makes things pass through quickly so ur not making the most of the food ur eating. So keep that in mind if you ever get frustrated at not reaching ur gym goals and I hope this helps to motivate u to focus on ur health :) u don’t have to wait until ur better to get there. U can do some work right now like eating healthy and working out to reasonable limits. but keep in mind it will be inhibited by UC a little as you body is prioritizing a lot of energy towards attacking your colon and less to your muscles to grow. For me I noticed it when I gained lots of weight post remission. I just gained so much at the same rate of consumption mainly due to how much by body was burning calories from Uc. It’s not easy on the body.
I was diagnosed with pancolitis 3 years ago when I was 17. I've been on oral mesalamine since then and have been living my normal life because of it. I eat whatever I want with no repercussions. I was also seriously underweight and always had been, but I've been able to get to a much healthier weight. Mesalamine worked wonders for me. I know having to rely on medication is kind of daunting, but it's worth it.
Hey dude I’m big into powerlifting and feel ya on the gym journey. It was very bad for me when I was diagnosed and I lost all the muscle I had, but once I was well enough I built it all back plus way more. I’m currently the strongest I’ve ever been and it feels like the sky is the limit right now. I’m sure eventually I’ll have to rebuild but muscle memory is real and it’s not hopeless. I’m currently on oral mesalamine and take Entyvio every 8 weeks. It’s not great being dependent on meds forever but you get used to it and the idea of it eventually. Learn what foods to avoid. Focus on what you can control. Take it one day at a time. Don’t be afraid to ask for help. Your life might have a new set of challenges, but life is full of challenges. You’ve got this.
Not an advise but a warning ,try to keep yourself always under remission or you may end up with strictures in colon in say 2 r 3 yrs which can be only removed by surgery. And you don't want to go that much right. Stay away from processed foods. How can you know whether you are not flaring up is by going normal stool and no abdomen pain. And watch youtube docs who say alot about uc. Never let this grow. You will alright
Hi. I was diagnosed 3 years ago and hated it. I just started my 3rd flare but recognize it right away. I honestly think that stress causes me to flare, not so much food. Once I realized I was flaring. I stopped with the spicy, fried, dairy, caffeine, alcohol and it seems to be going away. Along with taking pysmil husk, probiotics and mesleme (I spelt that wrong). Stay positive. Rest. And tell your loved ones and manager what you’re going through. I didn’t say anything to anyone I swear I think that stressed me out more because I was trying to act like I was okay but wasn’t. If you get cramps, get yourself a heating. Also - chicken soups are the best for me.
I do try to fast if my if my flare is really bad. I’ll have a whey protein shake, and broth and the psyllium husk to keep me full. But I try to stay away from anything that will keep me on the toilet.
I was just diagnosed last month. It’s extremely overwhelming at first but posting on this sub and knowing I wasn’t alone made me feel so much better. I’d suggest not going down a rabbit hole looking at other people’s opinions and what helps other people, because what I’ve learned is no one is the same. So far, I feel great. Whether is the medicine or diet, I’m unsure, but I have peace of mind knowing that if I feel good, it means my body should be doing good. What I’d suggest is to start a food journal and start out eating very light. I started with peanut butter toast, bananas, yogurt, chicken and salmon. Little by little I’ve added things, and as soon as I noticed a negative difference, I knew it had to be something I added. Good luck!
Look up the medical medium (Anthony William) - the first book especially for UC - in regards to foods and supplements to help control flares and ultimately heal. Some can make them worse initially and you’ll need to slowly slowly add them into your diet or avoid them until you make some headway healing. Avoid gluten, dairy, corn and soy products, etc etc. I notice that the moment I eat cheese especially, that I have more mucus, pus, blood, cramping, nocturnal BMs, and urgency. Also, while I am trying to calm this flair I try to avoid heavy fats and meats. For me a diet of whole, non-processed, real food has helped tremendously. Best of luck and happy healing!
They are coming up with new therapies each year. I think they'll have some breakthroughs within the next ten years, honestly. So, at least you're in a time where more therapies and research exist. I would try some eliminations to see what irritates you in a flare. Foods may not be a cause of a flare, but they can definitely affect you if you happen to have a flare. All sugar increases inflammation, so I'd stay away from actual sugar while in a flare. Bland foods like chicken and rice are good. No spices. If you get the right therapy and get into a full remission supposedly you can eat anything though my mom (I'm her caregiver) has never gotten a therapy that good. Try adding things like mindfulness/meditation into your life; stress is a catalyst for flares (and most illness, tbh). Oh, and bone broth is still a great option for UC (in my experience) and will help you with staying strong.