Welcome but sorry your butt is broken like ours is. I know we go through a lot of emotions as a newly diagnosed patient, from denial to anger and finally to acceptance and that takes time. We to to fear worstcase scenarios, and assume that will absolutely be us, despite the majority of UC cases being mild.
Be patient. It might be rough sailing for 3-4 or more months as there's a bit of initial trial and error in treating us, while different doses and meds are tried until they get if right in this very individualized illness.
The treatment goal is to get us into a long-term sustained remission which can last many years. As an example, I'm 10 years and counting within a remission without any symptoms. You'll get there too. In a remission we have a great quality of life without limitations. Flares, as you're in now, are truly awful but are fortunately temporary
To paraphrase some advice I got when I first got diagnosed:
Fortunately for you this is the best time in the history of the world to get diagnosed - there are a million treatment options capable of giving you back the life you once had. Bad news is you will still have some bad days.
You will have more drs appts than the normal person, you will have more colonoscopies than the normal person, but you have not had your life taken from you.
This disease will not kill you - you will live a long life until you likely die of old age like everyone else. It may be shitty some days (lol) but you can still live a full life with all of the experiences you plan on. It may just be a different route than the undiagnosed you would’ve taken.
I had UC for 9 years, so here’s a few tips that helped me navigate day by day:
-Food is different for all of us. What sets you off might not do it for another person with UC. So in the beginning it’s going to be a lot of trial and error. Introduce one new food and wait and see how you react. Write it down too.
-if you’re planning to go somewhere or have a longer drive, stop eating several hours beforehand to minimize bathroom stops
-On the flip side, if you find that you’re someone that goes a lot in the morning, and have to commute, travel, etc. try getting up slightly earlier to empty everything out. Saved me a lot of trouble.
-If it’s legal in your state, cannabis helps slow your digestive system down, and can help time between trips, and take down some of the cramping
-it’s okay to have days where you don’t want to do anything, or decide “You know what, screw it I’m gonna eat this despite knowing the outcome.” I did that a lot.
-People will for sure say to you that they’ve heard of some method/diet to cure their UC. There is no cure. Its fine if it worked for them, or whatever they claim. But again, this disease is so individualistic, that what they do, could set you off. Take it with a grain of salt.
Correct. There is no cure, except removal of the colon, which was what I got done after failing multiple medications. People would always send me smoothies, fruits, pills, claiming that it would “cure” UC. It’s just not the case. Sometimes I think stuff like that can do more harm because it gives people hope that it will work, and if there’s no change, people can mentally spiral that nothing will work, and those days can be really rough
People can have such long remissions that they feel like it's not a worry anymore, I have a family friend who had UC in his 30's but hasn't had a flare in 20+ years and never took any meds. Alastair Campbell also has a similar history. I know that's not the point you're making - there are plenty of charlatans out there pedalling shite to desperate people.
This never gets enough attention. I've heard everything from, "You just need to pray harder and it will go away" to "Here's this special diet with $100 monthly supplement subscription that will cure you." All of that does additional damage because instead of getting on a drug that actually works, you subsist on a liquid diet with a bunch of herbs that may help quell external symptoms while your colon becomes a land mine.
Also there's a huge difference between IBD and IBS.
Quite the opposite! The name of the surgery is called an Ileoanal Anastamosis. My Colitis is completely gone.
Your colon is removed, and your small intestine is formed into what is called a J Pouch, which holds stool.
My life is now 95% back to Pre-Colitis living. I still have to go maybe 5-9 times a day, but it does not dominate my life, and can hold it no problem. I sleep through then night. The whole thing was about a 9-10 month process but it was completely worth it.
I will add, most people do NOT need to go this route. But I failed off of Humira, Entyvio, Zeposia, and Remicade.
Check out r/Jpouch
I can vouch for this as well. I had UC for 16 years. I'm over 5 years post take down surgery now and my quality of life has undergone an unrecognizable, incredible, night/day difference to how I felt before the surgery. My fatigue, inflammation, pain, and other symptoms are completely gone.
It's an extreme procedure but it's well worth it if you are out of other options. There is always hope.
Thanks! Appreciate your reply. I always thought IBD was prevalent throughout the entire body and not just the colon - reassuring to hear it's not!
If you don't mind me asking, are you med free now?
Of course! The biggest difference in IBD is
Colitis- Only in the Colon
Crohns- Anywhere in your digestive tract
I’m completely med free.
The only thing I occasionally have to deal with is Pouchitis, which mirrors Colitis flare symptoms but on such a minor scale. A week of antibiotics and I’m back to normal.
I’ll also add that there are some foods that are a no go now, or have to be mindful of, like no leafy greens, raw veggies, etc. But my diet was along those lines anyway so it worked out perfect.
It does not remove the disease. UC is a chronic systemic illness that primarily targets the large intestine. Even our friend here replying admits to pouchitis plus. The reality is that removing the colon does not eliminate the disease, BUT it can get you 95% of the way there and can return you to a form of normalcy if nothing else is working or risk of colon cancer becomes too much. Surgery can be life restoring for those who need the option.
Well not entirely true. I’m not classified as having Ulcerative Colitis by my GI’s or Doctors anymore. There’s no medication for me to take because there’s nothing to treat.
I think you’re confusing Pouchitis for Cuffitis.
Pouchitis isn’t entirely known what causes it, but more thought to be a bacterial imbalance since our small intestines isn’t really made to hold stool for longer periods of time. Pouchitis I’ve had maybe 2 times, and was still 100x easier to deal with than UC.
Cuffitis on the other hand, is considered more of a form of UC, and that happens with people whose rectal stump had a lot of inflammation, or larger cuffs left after surgery.
In my case I have almost no cuff left, and what’s left has essentially no inflammation.
Whether they explicitly classify it or not, it’s still seemingly the disease. I mean granted we’re splitting hairs and trying to pick at something science doesn’t have answers for but when the leading theories on what UC is are currently based on gut microbiota imbalances, and pouchitis is behaving the same way as a form of microbiota imbalance… is there really any difference no matter what ribbon they want to tie on it? It’s still a presentation of UC. Thankfully because the colon is gone it is significantly easier to treat like you’ve experienced.
Hi! I got diagnosed a year ago today, I have been doing ok on the first line treatment of mesalamine! I did do some steroids at the beginning just to help clear the flare and i haven’t gone back on since. It’s only been a year but, I’m able to live (mostly) symptom free for like 80% of the year Id say. My calprotectin levels (stool sample) was super low which is good news, after about 6 months of mesalamine. Hoping the disease isn’t progressing but I’m going to find out later this year. Stay hopeful!❤️❤️❤️
I am currently taking the same medication four pills in the morning and a suppository at night. Ii was also prescribed a foam but I haven’t used it but I do feel somewhat better. I am in the cusp of needing mesalamine or Humara or Entivio. I would rather the mesalamine but my gastrointestinal is insisting on putting me on the Humara or Entivio. I am very hesitant to use those drugs. I don’t see anyway out of it I will have to bite the bullet and give it a try. I really don’t want an immune suppressant but truly I have been bleeding for two years and one ulcer has turned into six ulcers in the sigmoid colon. The other parts of my colon are fine.
Same boat friend. I have a family history of crohns but thought I got lucky since I didn’t develop it like my siblings as a kid. Made it 35 years then got diagnosed earlier this year. Also thankful it’s not crohns but it’s scary, not ever really knowing when the next flare is coming. Managing some days really well then getting hit the next and not being totally sure why. But for me, I’ve found the more I pay attention, the more experience I build and I’m starting to feel more in control of my situation. I also see my naturopath regularly for maintenance and will be doing a food sensitivity test to learn more about how my body tolerates food. And exercise regularly - adapt when you need to. And be kind to yourself.
You can do this!
Welcome to the club! Being diagnosed is stressful - especially the incurable part. But it gets easier. You just have to remember that during a flare your pain is temporary, and one day you will feel okay again.
If you are going to remember one piece of practical advice about UC it should be that flares do not go away on their own. I’m sure your doctor told you to call as soon as you see any symptoms. Mine did too, but I don’t think I understood the importance of that. Inflammation increases exponentially with time when untreated. The difference of getting medication one day earlier can make a huge difference.
Everyone has given good advice, but I wanted to chime in. You’re gonna live a normal life, maybe a few changes, but everyone in life has to accommodate for their needs. You got this my friend. Godspeed.
One other thing in addition to the great advice here. Work with your doctors, and make sure your doctors are working for you. As you research your disease and talk to some people here, you'll get a good sense of where you should be heading down a treatment path. If your doctor isn't leading the way and driving you towards clinical remission, find one that will. University docs tend to be the best.
Yes! It is not always easy or comfortable but advocating for yourself is key. My GI is a good clinician but once we confirm a diagnosis or new meds, I get the best help from a registered dietitian who specializes in GI disease and has taken me through the low FODMAP activity when I wasn’t in a flare so now I know and understand my “default” and normal food sensitivities. And that has helped me establish some baselines ways to eat and grocery shop so when I was in a severe flare she could guide my diet through the worst of it as we waited for new meds to work (they are so far and it’s been a couple months - Zeposia and Zenpep enzymes). I’ve also talked to a wellness nurse about accepting this new reality and let me say that finding this Reddit community has also been a game changer. So appreciate the feedback and insight and thoughtful responses. This disease requires patience, support, grace and humor.
Some tips I’d say is eat healthy food no junk and fast food. At least for me probiotics have saved my ass(literally)) don’t take any meds just probiotics and eating healthy. I’ve drastically reduced inflammation and barely get blood. Still working on it, now testing bovine colostrum to help repair my gut. Now idk how many downvotes this gonna get but I am very firm in the belief that we all have UC due to an absence of essential strains of bacteria that get killed off thru either antibiotic use which was the case for me or just long term bad diets with lower fiber which doesn’t feed the healthy bacteria in your colon or the absence of healthy strains that you just never got which can be associated with just city life. There’s studies that support what I’m saying but still testing in progress but for you I’d say I would try probiotics like VSL3 and drink kefir. Helps with leaky gut. A lot.
I get a new diagnosis with every scope, my disease is considered mild although I’m miserable today. This year I have UC and Crohns. Last year I had only UC. I have long periods of remission thanks to my drs. Best of luck to stay well.
I’m sorry that you are not feeling well and are facing this monumental change. This is a scary time, but you are not alone in your struggle.
Approach all advice (even from your care team) critically, and listen to your body most of all. You will get a sense really quickly when something isn’t right.
You will need to adjust to this new “normal”. I’ve been diagnosed for 12 years now, and continue to have my ups and downs with this illness. Easier said than done, but you will get there. I do not think I have a “normal” life, but I certainly have one that is fulfilling. I can’t climb mountains in the way I would want, traveling on a plane still scares me, and I’m always dreading my next flare or accident. Despite this, I create and find joy, and have learned to appreciate all that is around me through mindful meditation. You will find your own way of navigating the struggles.
Here’s some practical advice for you based on my experience:
- pack an emergency kit. I call mine my “empowerment” kit as it empowers me to face the world with confidence. Mine is a gallon ziplock bag packed with toilet paper, wet wipes, extra underwear, a plastic grocery bag, and hand sanitizing wipes. I’ve had countless accidents, pooped in a grocery bag or outside, etc. But this kit allows me to face the day-to-day with peace.
-know your rights! If you are in the US, several states have bathroom laws allowing you to use restrooms not ordinarily open to customers. You can get a card for this from your doctor or orgs like the Crohns and Colitis Foundation. You also qualify as “disabled” under the ADA, and your workplace MUST make reasonable accommodations for you.
-build your community of support. Whether it is virtual, in person, friends family or strangers, have folks that you can vent to and laugh/cry with.
-get a bidet. When shit gets messy and agonizing, I give thanks to my bidet for making life easier!
Good luck and best wishes to you. You will uncover strength you didn’t know you had and will look back with pride. Keep up the good fight!
Hi there!! I'm 16 and diagnosed at 5 with Crohn's, and then re-diagnosed at 7 with UC.
Generally you just kinda get used to it, since I was so young it never really scared me because I didn't understand it so I can't really relate to you on how scared you are. There will be setbacks though, every time I go out I have to worry about where a bathroom is and anti-diarrhea has been a life saver for me, and sometimes flares can set me back in school.
Don't let it stop you though! As long as you find the right meds, keep track of how you're doing, and continue living life to the fullest you'll be a-ok!! There will be some hard times, but life is full of rough patches, you'll get through it! :)
If you ever have questions about anything call your doctor, they're there to help and answer questions, even ones we feel are silly. I'm sure they'd rather have you give them a call then just winging it and hoping for the best lol
A symptom tracker continues to be so helpful — my dietitian has me using one called “my Symptoms” and it is an app that lets you track as much or as few things you want like meals of course but it’s also helped me in seeing the timing and severity of my diet and symptoms so I can understand my body in good and bad times and make plans accordingly. Lots of helpful replies in this thread so I hope they’re helpful and hopeful!
So far I’ve found that I do not have problems with bananas, chicken breasts (plain or breaded) mashed potatoes and ramen, Cheese-It’s and a bagel with cream cheese was actually ok too. Pizza kills me every time and someday I’ll learn but I do love my pizza. Candy I can’t touch except gummy bears.
My biggest tips would be:
Figure out the foods you can't eat rather than only going by generic lists. I'm sure you may have an idea already. Leafy vegetables have always been zero tolerance for me, and noticed it well before my first scope 20 years ago. You'll even notice things that seem odd, such as I can use hot sauce without much problem. However, if I eat something where the spice is made into the breading/solid part of the food I suffer. My best guess is the spices in the breading of a spicy chicken sandwich from chick fil a are obviously solid, and sit in place longer causing more irritation.
Be extra careful with food preparation and handling of leftovers. I've had food poisoning more than I've had the flu in my life, with salmonella being absolutely terrible. This is one I don't see that many people talk about, most of the discussion lingers around if food poisoning caused the uc or crohn's. Though I've only recently joined this subreddit, and it may just be that google's algorithm favors those articles.
I'm even more extra careful after I've been sick, as a lot of my flares have followed a sickness. Nature of the beast.
If you haven't already, you'll find that wet wipes are invaluable. Also not a bad idea to keep toilet paper in your vehicle. Another "if you haven't already" thing, you may want to figure out which places have clean restrooms on your normal routes. Rushing in and seeing a toilet with pee all over the seat, stopped up with toilet paper nearly to the seat will make your heart sink.
I was initially diagnosed with crohn's in 05, at the next scope it was self limiting colitis (they didn't have a response when I said "yes well, my self doesn't seem to be limiting it very much") next scope it was microscopic colitis, then to ulcerative colitis. As far as a checkbox sheet, I could fit either mc or uc. I rarely have fevers, never decreased appetite, but I get mouth sores, namely canker sores any time I bite my lip/cheek, and I've always randomly had blood. While technology for diagnosing is much better now than 2005, some of it still comes down to skill/interpretation of the gi doctor and pathologist. So make sure to keep up with yourself and medical care, because diagnosis and treatment may change. You may be treated in a certain way and improve, but turns out it still wasn't as much of an improvement as it could have been.
If you don't have them already, hemorrhoids can always become a thing for you. The wipes are definitely a lifesaver with them. A buddy of mine with crohn's told me years ago that if I could deal with mine, keep doing it, because he said his getting removed was hell for months. That may not be the case now, as he had it done in the early 2000s, but I've always kept that in mind.
I’ve had UC for almost twenty years. I’ve been on and off a few different meds but aside from one really serious flare in the beginning when I wasn’t on the right medication, it’s been pretty under control. All the flares I’ve had over the years have been pretty mild.
A few years ago I started on Entyvio and it was life changing. I felt better than I ever have. No flares since I started. No side effects. And even most of my more IBS type symptoms have gone away. It’s an Iv infusion but don’t let that scare you. It’s really not a big deal. And it takes less than an hour.
I am immunosuppressed but I’ve also never really had any issues with that. I’ve worked in a school with children for years and rarely get sick. I haven’t even gotten COvID this far.
UC is something I rarely think about and when it’s under control barely affects your life. So I wouldn’t stress too much. Just find a good med.
Also, I highly reccomend you stay away from HUMIRA. I was in it for a few years. Although it never really helped. I’ve recently been diagnosed with MS. Which really sucks. And my doctors say there’s a chance it was the humira. Though there’s not enough evidence or studies to know for sure. I’d avoid it just in case. UC is tolerable. MS is not.
Good luck.
I was diagnosed just over a year ago and was terrified! I was so sick and depressed that this was my life now. Fast forward to this February, I got a colonoscopy, and I’m in remission!! Started Humira last April and I am back to normal. No symptoms, I eat and do whatever I want without trouble! Writing because I wished I had read more answers like this. Most of what I was reading at diagnosis was bleak.
I had moderate uc effecting my entire colon.
Good luck!
Welcome but sorry your butt is broken like ours is. I know we go through a lot of emotions as a newly diagnosed patient, from denial to anger and finally to acceptance and that takes time. We to to fear worstcase scenarios, and assume that will absolutely be us, despite the majority of UC cases being mild. Be patient. It might be rough sailing for 3-4 or more months as there's a bit of initial trial and error in treating us, while different doses and meds are tried until they get if right in this very individualized illness. The treatment goal is to get us into a long-term sustained remission which can last many years. As an example, I'm 10 years and counting within a remission without any symptoms. You'll get there too. In a remission we have a great quality of life without limitations. Flares, as you're in now, are truly awful but are fortunately temporary
To paraphrase some advice I got when I first got diagnosed: Fortunately for you this is the best time in the history of the world to get diagnosed - there are a million treatment options capable of giving you back the life you once had. Bad news is you will still have some bad days. You will have more drs appts than the normal person, you will have more colonoscopies than the normal person, but you have not had your life taken from you. This disease will not kill you - you will live a long life until you likely die of old age like everyone else. It may be shitty some days (lol) but you can still live a full life with all of the experiences you plan on. It may just be a different route than the undiagnosed you would’ve taken.
Well said! 👏
Thank you for this
Thank you for this! I also needed to read it. 😌
I had UC for 9 years, so here’s a few tips that helped me navigate day by day: -Food is different for all of us. What sets you off might not do it for another person with UC. So in the beginning it’s going to be a lot of trial and error. Introduce one new food and wait and see how you react. Write it down too. -if you’re planning to go somewhere or have a longer drive, stop eating several hours beforehand to minimize bathroom stops -On the flip side, if you find that you’re someone that goes a lot in the morning, and have to commute, travel, etc. try getting up slightly earlier to empty everything out. Saved me a lot of trouble. -If it’s legal in your state, cannabis helps slow your digestive system down, and can help time between trips, and take down some of the cramping -it’s okay to have days where you don’t want to do anything, or decide “You know what, screw it I’m gonna eat this despite knowing the outcome.” I did that a lot. -People will for sure say to you that they’ve heard of some method/diet to cure their UC. There is no cure. Its fine if it worked for them, or whatever they claim. But again, this disease is so individualistic, that what they do, could set you off. Take it with a grain of salt.
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Correct. There is no cure, except removal of the colon, which was what I got done after failing multiple medications. People would always send me smoothies, fruits, pills, claiming that it would “cure” UC. It’s just not the case. Sometimes I think stuff like that can do more harm because it gives people hope that it will work, and if there’s no change, people can mentally spiral that nothing will work, and those days can be really rough
People can have such long remissions that they feel like it's not a worry anymore, I have a family friend who had UC in his 30's but hasn't had a flare in 20+ years and never took any meds. Alastair Campbell also has a similar history. I know that's not the point you're making - there are plenty of charlatans out there pedalling shite to desperate people.
This never gets enough attention. I've heard everything from, "You just need to pray harder and it will go away" to "Here's this special diet with $100 monthly supplement subscription that will cure you." All of that does additional damage because instead of getting on a drug that actually works, you subsist on a liquid diet with a bunch of herbs that may help quell external symptoms while your colon becomes a land mine. Also there's a huge difference between IBD and IBS.
“It’s not working” “Well CLEARLY you must upgrade to our Super Deluxe PRObiotic package for an extra $50 a month!”
Surely removing your colon doesn't remove the disease - wouldn't the 'external' symptoms continue, e.g. general inflammation, fatigue etc.?
Quite the opposite! The name of the surgery is called an Ileoanal Anastamosis. My Colitis is completely gone. Your colon is removed, and your small intestine is formed into what is called a J Pouch, which holds stool. My life is now 95% back to Pre-Colitis living. I still have to go maybe 5-9 times a day, but it does not dominate my life, and can hold it no problem. I sleep through then night. The whole thing was about a 9-10 month process but it was completely worth it. I will add, most people do NOT need to go this route. But I failed off of Humira, Entyvio, Zeposia, and Remicade. Check out r/Jpouch
I can vouch for this as well. I had UC for 16 years. I'm over 5 years post take down surgery now and my quality of life has undergone an unrecognizable, incredible, night/day difference to how I felt before the surgery. My fatigue, inflammation, pain, and other symptoms are completely gone. It's an extreme procedure but it's well worth it if you are out of other options. There is always hope.
Thanks! Appreciate your reply. I always thought IBD was prevalent throughout the entire body and not just the colon - reassuring to hear it's not! If you don't mind me asking, are you med free now?
Of course! The biggest difference in IBD is Colitis- Only in the Colon Crohns- Anywhere in your digestive tract I’m completely med free. The only thing I occasionally have to deal with is Pouchitis, which mirrors Colitis flare symptoms but on such a minor scale. A week of antibiotics and I’m back to normal. I’ll also add that there are some foods that are a no go now, or have to be mindful of, like no leafy greens, raw veggies, etc. But my diet was along those lines anyway so it worked out perfect.
It does not remove the disease. UC is a chronic systemic illness that primarily targets the large intestine. Even our friend here replying admits to pouchitis plus. The reality is that removing the colon does not eliminate the disease, BUT it can get you 95% of the way there and can return you to a form of normalcy if nothing else is working or risk of colon cancer becomes too much. Surgery can be life restoring for those who need the option.
Well not entirely true. I’m not classified as having Ulcerative Colitis by my GI’s or Doctors anymore. There’s no medication for me to take because there’s nothing to treat. I think you’re confusing Pouchitis for Cuffitis. Pouchitis isn’t entirely known what causes it, but more thought to be a bacterial imbalance since our small intestines isn’t really made to hold stool for longer periods of time. Pouchitis I’ve had maybe 2 times, and was still 100x easier to deal with than UC. Cuffitis on the other hand, is considered more of a form of UC, and that happens with people whose rectal stump had a lot of inflammation, or larger cuffs left after surgery. In my case I have almost no cuff left, and what’s left has essentially no inflammation.
Whether they explicitly classify it or not, it’s still seemingly the disease. I mean granted we’re splitting hairs and trying to pick at something science doesn’t have answers for but when the leading theories on what UC is are currently based on gut microbiota imbalances, and pouchitis is behaving the same way as a form of microbiota imbalance… is there really any difference no matter what ribbon they want to tie on it? It’s still a presentation of UC. Thankfully because the colon is gone it is significantly easier to treat like you’ve experienced.
Wonderful guidance thank you for this. I also helped me.
Hi! I got diagnosed a year ago today, I have been doing ok on the first line treatment of mesalamine! I did do some steroids at the beginning just to help clear the flare and i haven’t gone back on since. It’s only been a year but, I’m able to live (mostly) symptom free for like 80% of the year Id say. My calprotectin levels (stool sample) was super low which is good news, after about 6 months of mesalamine. Hoping the disease isn’t progressing but I’m going to find out later this year. Stay hopeful!❤️❤️❤️
I am currently taking the same medication four pills in the morning and a suppository at night. Ii was also prescribed a foam but I haven’t used it but I do feel somewhat better. I am in the cusp of needing mesalamine or Humara or Entivio. I would rather the mesalamine but my gastrointestinal is insisting on putting me on the Humara or Entivio. I am very hesitant to use those drugs. I don’t see anyway out of it I will have to bite the bullet and give it a try. I really don’t want an immune suppressant but truly I have been bleeding for two years and one ulcer has turned into six ulcers in the sigmoid colon. The other parts of my colon are fine.
Same boat friend. I have a family history of crohns but thought I got lucky since I didn’t develop it like my siblings as a kid. Made it 35 years then got diagnosed earlier this year. Also thankful it’s not crohns but it’s scary, not ever really knowing when the next flare is coming. Managing some days really well then getting hit the next and not being totally sure why. But for me, I’ve found the more I pay attention, the more experience I build and I’m starting to feel more in control of my situation. I also see my naturopath regularly for maintenance and will be doing a food sensitivity test to learn more about how my body tolerates food. And exercise regularly - adapt when you need to. And be kind to yourself. You can do this!
Welcome to the club! Being diagnosed is stressful - especially the incurable part. But it gets easier. You just have to remember that during a flare your pain is temporary, and one day you will feel okay again. If you are going to remember one piece of practical advice about UC it should be that flares do not go away on their own. I’m sure your doctor told you to call as soon as you see any symptoms. Mine did too, but I don’t think I understood the importance of that. Inflammation increases exponentially with time when untreated. The difference of getting medication one day earlier can make a huge difference.
Everyone has given good advice, but I wanted to chime in. You’re gonna live a normal life, maybe a few changes, but everyone in life has to accommodate for their needs. You got this my friend. Godspeed.
One other thing in addition to the great advice here. Work with your doctors, and make sure your doctors are working for you. As you research your disease and talk to some people here, you'll get a good sense of where you should be heading down a treatment path. If your doctor isn't leading the way and driving you towards clinical remission, find one that will. University docs tend to be the best.
Yes! It is not always easy or comfortable but advocating for yourself is key. My GI is a good clinician but once we confirm a diagnosis or new meds, I get the best help from a registered dietitian who specializes in GI disease and has taken me through the low FODMAP activity when I wasn’t in a flare so now I know and understand my “default” and normal food sensitivities. And that has helped me establish some baselines ways to eat and grocery shop so when I was in a severe flare she could guide my diet through the worst of it as we waited for new meds to work (they are so far and it’s been a couple months - Zeposia and Zenpep enzymes). I’ve also talked to a wellness nurse about accepting this new reality and let me say that finding this Reddit community has also been a game changer. So appreciate the feedback and insight and thoughtful responses. This disease requires patience, support, grace and humor.
Some tips I’d say is eat healthy food no junk and fast food. At least for me probiotics have saved my ass(literally)) don’t take any meds just probiotics and eating healthy. I’ve drastically reduced inflammation and barely get blood. Still working on it, now testing bovine colostrum to help repair my gut. Now idk how many downvotes this gonna get but I am very firm in the belief that we all have UC due to an absence of essential strains of bacteria that get killed off thru either antibiotic use which was the case for me or just long term bad diets with lower fiber which doesn’t feed the healthy bacteria in your colon or the absence of healthy strains that you just never got which can be associated with just city life. There’s studies that support what I’m saying but still testing in progress but for you I’d say I would try probiotics like VSL3 and drink kefir. Helps with leaky gut. A lot.
Love to hear alternative ideas, thanks for sharing!
Hope everything will be okay best of luck
I get a new diagnosis with every scope, my disease is considered mild although I’m miserable today. This year I have UC and Crohns. Last year I had only UC. I have long periods of remission thanks to my drs. Best of luck to stay well.
I’m sorry that you are not feeling well and are facing this monumental change. This is a scary time, but you are not alone in your struggle. Approach all advice (even from your care team) critically, and listen to your body most of all. You will get a sense really quickly when something isn’t right. You will need to adjust to this new “normal”. I’ve been diagnosed for 12 years now, and continue to have my ups and downs with this illness. Easier said than done, but you will get there. I do not think I have a “normal” life, but I certainly have one that is fulfilling. I can’t climb mountains in the way I would want, traveling on a plane still scares me, and I’m always dreading my next flare or accident. Despite this, I create and find joy, and have learned to appreciate all that is around me through mindful meditation. You will find your own way of navigating the struggles. Here’s some practical advice for you based on my experience: - pack an emergency kit. I call mine my “empowerment” kit as it empowers me to face the world with confidence. Mine is a gallon ziplock bag packed with toilet paper, wet wipes, extra underwear, a plastic grocery bag, and hand sanitizing wipes. I’ve had countless accidents, pooped in a grocery bag or outside, etc. But this kit allows me to face the day-to-day with peace. -know your rights! If you are in the US, several states have bathroom laws allowing you to use restrooms not ordinarily open to customers. You can get a card for this from your doctor or orgs like the Crohns and Colitis Foundation. You also qualify as “disabled” under the ADA, and your workplace MUST make reasonable accommodations for you. -build your community of support. Whether it is virtual, in person, friends family or strangers, have folks that you can vent to and laugh/cry with. -get a bidet. When shit gets messy and agonizing, I give thanks to my bidet for making life easier! Good luck and best wishes to you. You will uncover strength you didn’t know you had and will look back with pride. Keep up the good fight!
Hi there!! I'm 16 and diagnosed at 5 with Crohn's, and then re-diagnosed at 7 with UC. Generally you just kinda get used to it, since I was so young it never really scared me because I didn't understand it so I can't really relate to you on how scared you are. There will be setbacks though, every time I go out I have to worry about where a bathroom is and anti-diarrhea has been a life saver for me, and sometimes flares can set me back in school. Don't let it stop you though! As long as you find the right meds, keep track of how you're doing, and continue living life to the fullest you'll be a-ok!! There will be some hard times, but life is full of rough patches, you'll get through it! :) If you ever have questions about anything call your doctor, they're there to help and answer questions, even ones we feel are silly. I'm sure they'd rather have you give them a call then just winging it and hoping for the best lol
I’m recently diagnosed also but the first thing I did was start a type of food journal so I could know definitely not touch certain things
A symptom tracker continues to be so helpful — my dietitian has me using one called “my Symptoms” and it is an app that lets you track as much or as few things you want like meals of course but it’s also helped me in seeing the timing and severity of my diet and symptoms so I can understand my body in good and bad times and make plans accordingly. Lots of helpful replies in this thread so I hope they’re helpful and hopeful!
What food have you found that is a no go? Have you found any that helps in any way?
So far I’ve found that I do not have problems with bananas, chicken breasts (plain or breaded) mashed potatoes and ramen, Cheese-It’s and a bagel with cream cheese was actually ok too. Pizza kills me every time and someday I’ll learn but I do love my pizza. Candy I can’t touch except gummy bears.
My biggest tips would be: Figure out the foods you can't eat rather than only going by generic lists. I'm sure you may have an idea already. Leafy vegetables have always been zero tolerance for me, and noticed it well before my first scope 20 years ago. You'll even notice things that seem odd, such as I can use hot sauce without much problem. However, if I eat something where the spice is made into the breading/solid part of the food I suffer. My best guess is the spices in the breading of a spicy chicken sandwich from chick fil a are obviously solid, and sit in place longer causing more irritation. Be extra careful with food preparation and handling of leftovers. I've had food poisoning more than I've had the flu in my life, with salmonella being absolutely terrible. This is one I don't see that many people talk about, most of the discussion lingers around if food poisoning caused the uc or crohn's. Though I've only recently joined this subreddit, and it may just be that google's algorithm favors those articles. I'm even more extra careful after I've been sick, as a lot of my flares have followed a sickness. Nature of the beast. If you haven't already, you'll find that wet wipes are invaluable. Also not a bad idea to keep toilet paper in your vehicle. Another "if you haven't already" thing, you may want to figure out which places have clean restrooms on your normal routes. Rushing in and seeing a toilet with pee all over the seat, stopped up with toilet paper nearly to the seat will make your heart sink. I was initially diagnosed with crohn's in 05, at the next scope it was self limiting colitis (they didn't have a response when I said "yes well, my self doesn't seem to be limiting it very much") next scope it was microscopic colitis, then to ulcerative colitis. As far as a checkbox sheet, I could fit either mc or uc. I rarely have fevers, never decreased appetite, but I get mouth sores, namely canker sores any time I bite my lip/cheek, and I've always randomly had blood. While technology for diagnosing is much better now than 2005, some of it still comes down to skill/interpretation of the gi doctor and pathologist. So make sure to keep up with yourself and medical care, because diagnosis and treatment may change. You may be treated in a certain way and improve, but turns out it still wasn't as much of an improvement as it could have been. If you don't have them already, hemorrhoids can always become a thing for you. The wipes are definitely a lifesaver with them. A buddy of mine with crohn's told me years ago that if I could deal with mine, keep doing it, because he said his getting removed was hell for months. That may not be the case now, as he had it done in the early 2000s, but I've always kept that in mind.
I’ve had UC for almost twenty years. I’ve been on and off a few different meds but aside from one really serious flare in the beginning when I wasn’t on the right medication, it’s been pretty under control. All the flares I’ve had over the years have been pretty mild. A few years ago I started on Entyvio and it was life changing. I felt better than I ever have. No flares since I started. No side effects. And even most of my more IBS type symptoms have gone away. It’s an Iv infusion but don’t let that scare you. It’s really not a big deal. And it takes less than an hour. I am immunosuppressed but I’ve also never really had any issues with that. I’ve worked in a school with children for years and rarely get sick. I haven’t even gotten COvID this far. UC is something I rarely think about and when it’s under control barely affects your life. So I wouldn’t stress too much. Just find a good med. Also, I highly reccomend you stay away from HUMIRA. I was in it for a few years. Although it never really helped. I’ve recently been diagnosed with MS. Which really sucks. And my doctors say there’s a chance it was the humira. Though there’s not enough evidence or studies to know for sure. I’d avoid it just in case. UC is tolerable. MS is not. Good luck.
I was diagnosed just over a year ago and was terrified! I was so sick and depressed that this was my life now. Fast forward to this February, I got a colonoscopy, and I’m in remission!! Started Humira last April and I am back to normal. No symptoms, I eat and do whatever I want without trouble! Writing because I wished I had read more answers like this. Most of what I was reading at diagnosis was bleak. I had moderate uc effecting my entire colon. Good luck!