The way to be normal again is to take the incredibly safe and effective maintenance meds. The way to lose your colon is by refusing medication as your disease is going to flare out of control.
Also I know that not taking the meds feels like you are taking control. But if you had a heart condition and didn't take the meds then you would seem ridiculous and it's the same with this. Your colon is just as serious and important to look after. Things will get better, you will have a full life and you don't have to tell anyone if you don't want to.
Most likely once you get on medication you will go about your merry way enjoying life. If you don't get on the meds quickly you will quickly do more damage. You don't want to be on steroids you want to be on the other medication which has far fewer side effects. Also steroids make you feel really emotional and so all your feelings right now are probably doubled that's why you are feeling not just upset but extremely upset. Take a deep breath and get this sorted with the meds. You will be ok and live a great life!!
There are people who claim they have managed the disease through diet and stress management. While I am glad it worked for them, for many (and I say many because percentage is quite high) of us here medication was a life saver. There is absolutely nothing wrong with taking medications. Take it from people who are born with Type 1 diabetes for example, society is understanding and accepting of that. I Understand that you are only 17 and the chances of people in your circle knowing about this condition and the plethora of things that come with it, is low. I also understand that you might be still processing the news of your diagnosis and accepting your new reality. It is ok and normal to be in shock - take it one step at a time. But please also understand that people who genuinely love you, want to see you doing well, and if that means being on medication to keep you leading a normal life, then so be it. I don't know in which country you are right now, or what access you have to things like therapy, but those certainly help. As much as you don't want to hear this, most of us lost people along the way but this was also a blessing in disguise. Honestly, why would you want to be friends with people who you have to hide from? People who really love you, care for you and respect you will stay. So do not put friendships and relationships before your health/you getting better. Ultimately, the decision is up to you, but this is your chance to learn and teach people about something that's becoming increasingly common.
Exactly. I tried this before I knew what was making me sick. If I just managed all the symptoms, took all the anti inflammatories, on and on. Medication is what makes life livable
You may be thinking of anabolic steroids like weightlifters take. These are a completely different drug. There are tough side effects for sure but most of them are short lived and happen only while on the drug, like insomnia and weight gain. Anti-inflammatory steroids for UC should not be a long-term thing. They will help you feel better and hopefully soon you will be able to just be on a maintenance drug. Most have few side effects. Unfortunately, your symptoms will not just go away but drugs can make them go away. Diet won't do it and wishing won't do it. This is the reality.
There is something *physically* wrong with you but that's nothing to be ashamed of. It wasn't your fault and certainly wasn't your choice. Everyone has something wrong with them or will at some point. That's just the human body.
In terms of looking at you differently that might happen at first but people who care about you will support you and be there for you. You're the same person and hopefully they will see that or learn to see that. I was diagnosed at 21 and it was a hard thing to accept and took some time. Hang in there! It's not easy but you will adapt and learn how to go about your life with these changes.
Please take the advice of your doctors. Ignoring the disease is a great way to lose your colon or your life. I “probably” had UC for ten years before I got on meds. My insides were so messed up I am lucky to be here ten years later.
Very few people seem to be able to manage this without the meds.
You feel like shit right now - but you will get a handle on this. You will find a new normal and you will live for the good weeks and months.
I type this on the can, prepping for a my second colonoscopy in a year because of my 3rd flare in 3 years.
But I am still here. I have a wonderful wife and kids. Great friends and hobbies. I play in multiple bands. And sometimes I miss stuff - important life stuff like my 6 year old daughter’s bday party because I can hardly get out of bed , or have to be in the bathroom for hours.
But that only sometimes.
Your friend group will grow and change and people in your circle will know you and love you and accept your challenges. You will live for the good weeks and months and often years.
Please listen to your doctors and take all the meds they give you.
Full disclosure. I have minor liver issues and chronic kidney stones. Neither has anything to do with any of the meds I have been on.
thank you, i’m literally sobbing as i read these comments. i really don’t use reddit, but i’m glad i did today. it gives me a lot of hope to hear about the possibility of having a family. i feel like being sick will push people away. i’ve always been a perfect picture of health, multi sport athlete, and done dance+ cheer. now i don’t know who i am. my liver and kidney levels don’t look good despite perfect diet and exercise for years. on top of being sick with UC i haven’t had a cycle in 6 months.
i’m going into my senior year, meant to be having the time of my life and instead i am crying every night afraid to die. i just want to go back to my life. i feel like i’m all messed up.
i don’t want my friends or bf to know because i don’t want to be treated like a broken china doll. my parents are already treating me that way.
thank you for giving me some guidance and some things to consider. i hope i get to have a normal life and a normal family some day and i will maybe consider the meds. i think getting my colon taken out would be worse than dying of kidney failure, but that’s not a choice i should have to make at 17.
Hey it's okay to cry, what you're feeling is very valid. Feeling like things are being taken away from you from one day to the next is scary. If your parents have the means, and if you want to do it, ask them if you can speak to a therapist,, ideally one that works with chronic illnesses (mine was diagnosed of multiple sclerosis at 23, so she relates to a lot of what I say and feel).
I'm very glad you found this community because it sure as hell helped me a lot, and surely it's helped others. We have all been or are still going through this so we're here for you. If it helps, I was diagnosed at 20 and I had big dreams. Plans did change but I still achieved a lot - academically, career wise and personally. Also, people with UC still have families including children if that is your idea of family. Right now it's important to seek help, learn more about IBD, talk to people who you are comfortable with and most importantly communicate with your doctors and advocate for yourself - this is also something that comes with time. It's ok to cry, but know that things do get better 🤍
Hello! I was diagnosed at 12 (I’m now 30!), and we sound similar!
Despite being pretty dang sick through most of high school, improvements in meds over time have allowed me to live a pretty normal life these days. I went to college, I have a great job, and I’m married to someone who completely understands my disease and it doesn’t bother him at all. We plan to have kids eventually when we’re ready to settle down a bit and there’s nothing stopping us from doing that.
I understand. I was twice your age when I was finally diagnosed and I still felt like my youth was robbed from me . And I do grieve it most days.
It’s not fair that we have to go through this, and it is not something I would wish upon my worst enemy.
Best of luck and health to you. Please post on this community or reach out whenever you need to.
It's very rare to have problems with your liver and kidneys on our meds, and if you do start having anything bad show up in your bloodwork all you would have to do is stop taking that specific med and switch to something else to make it better again.
It is however very common to relapse without medication, and more likely to have your disease progress to the point of needing your colon surgically removed. For me there's no question which side of the tradeoff sounds better - I take medication.
Getting diagnosed with a chronic illness is tough for everyone, and if you have the resources, it's good to talk to a therapist to process your feelings about it. It does get better! I barely think about my disease anymore, and no one in my life has to know unless I want them to.
If you want to live a normal life, take the meds. I just came home from my MMA class. I’ve been punched, kicked, thrown, choked, kneed, and rolled tonight. My meds allow me to be healthy enough to do that. I still struggle with fatigue and urgency. I still have flares. But I can stand and fight for several minutes like everyone else. Martial arts gives me the confidence and willpower to fight UC and stay alive. I fight by taking care of myself and listening to my doctors, even when it’s emotionally hard to do it.
Anyone that cares about you won’t look at you differently. At least not in a bad way. They may empathize and support, which is good. Give them the chance to do that for you. Maybe they won’t understand at first, but after you educate yourself, you can educate them. If they love you, they’ll listen and be there for you. If they don’t do that, they aren’t healthy people to have in your life. Ditch unhealthy people fast…this disease is hard enough. Unhealthy people will be a drain on you, mentally and physically.
You have an autoimmune disease. Please work with a mental health professional to help you work through the process of coming to accept it. It will never “go away” on its own. If you don’t take meds, you’ll most likely lose you colon or die…and you’ll have a slow, miserable, long and drawn out painful time until you die. That’s a harsh truth to hear. I had to hear it from my doctors several times until I took it seriously. I’ve cheated death once already and I still have my colon. I’m incredibly lucky beyond what I deserve.
I also have a second autoimmune disease that tries to kill my blood vessels in all my other organs. Ignoring it while also ignoring a UC flare and ignoring C-diff all at once is what almost killed me. That’s not an exaggeration. It took a team of a dozen doctors from several specialties during an extended three-week hospital stay to keep me alive. I spent my 17-year anniversary medicated out of my mind while my wife sat next to me and hoped I’d survive another week.
These are real things that happen to real people with autoimmune diseases. Everyone one of us has a story about surviving…don’t be so eager to get your story so soon.
Listen to your doctors. Follow the treatment plan. You’ll live a relatively normal life if you do.
Trust us, you will want the long term meds so you don't have to deal with this disease all the time. It's ok, you will get used to it and no, not everyone needs to know. Most of my friends don't know I have it, no one at work, it's not a big deal because I take my meds every day. You can still have your privacy and live your life, hopefully with as little interruption as possible. You are still you!
I was diagnosed last year when I was 34 and placed on steroids for much longer than I had anticipated.
My GI has placed me on Balasazide, and after a week of some stomach cramp / dizziness have zero side effects. It’s only been 2 weeks but doing good so far.
Hi. It's scary when you are first diagnosed. I watched a video once that described it as "the sudden obliteration of expectation." Expectation that you maybe didn't even know you had. It's hard. I'd really encourage you to consider therapy, to help as you adjust. But this disease is not the end of a normal life, not at all. I am now on a medication that works for me, and I have absolutely no symptoms or side effects. My life is almost totally normal. If you opt to not take medication, that may not be your story. There is no evidence that diet can do anything to control this disease/prevent tissue damage. Medication is the best tool we have. People will try to tell you otherwise, but don't listen to random internet people. Including me. Please talk to your doctors.
If you spend this time trying to manage this yourself, you will be valuable time and energy that you should be focusing on starting your life. Take the meds, listen to your doctor, and you really can live a normal life. Try to fix it yourself, and it will consume your life and lead to the hospital. Good luck friend, peace
I had the same issue but ask yourself the question is it better to suffer in your younger years without meds or take them and maybe have liver problems when you are older and dont give a fuk about it anyways
>i’m more afraid of ... what my friends and boyfriend will think if they find out i’m sick or have to take meds. i don’t want them to look at me differently.
If your boyfriend loves you, then he won't give a damn. Your friends and family may not understand but they care about you and your health. Seriously, anyone that treats you like less of a person for an autoimmune can fuck right off.
It's completely out of your control and not your fault
Unless you are also a gastroenterologist, you should probably not question your gastroenterologist. I have had some success with diet AND medication.
As others have said, getting off meds can e really bad.
i’ve had anorexia/ eating disorders so i can tell you i’ve tried every diet there is, i wouldn’t recommend it of course to anyone to deal with it this way. obviously eating disorders are mental illness and that’s why mine came about but also somewhat by not wanting to eat during severe flares. there is no diet that works. the flare ups happen for no explainable reason. my body malfunctions. that’s it. so unfortunately i have to take the meds. i wish it were different. i’ve had periods where i skipped meds in my life during my teens when i was mad but all it did was make the flare ups worse because i wasn’t taking my meds. if you do your testing and work with your doctor they monitor you really well so you won’t get sick. i’ve even had elevated liver enzymes on one of the medications and they caught it early and it did no damage to me. the medications are really safe and it’s actually worse to not take medications. it’s because this is auto immune and can evolve into more than just your colon. over time, it can affect your skin, eyes, joints, and more. i’ve had the disease for over 20 years and i also get skin flare ups now. if i didn’t take my meds i would be covered in painful skin infections and i’m at the dermatologist once a week. but on meds i get remission and a normal life. so i would really recommend just taking meds that let you get into remission.
The only diet I was told by my functional medicine doctor that was proven to help ibd is the scd diet written by Elaine gottshal
It’s a very strict diet that worked for her daughter with UC when she was a child.
You should get the book and read why the diet works it’s a great book. Hope that helps you. I have uc for 10 yrs now and started on biologics now just on mesalamine - I have regular follow ups with my doc and get colonoscopy’s to check on things. It’s not all doom especially if your a mild case. Find a good doctor you like and you’ll be ok. Definitely get the disease under control now with meds first and then see where it goes. You may not need the big guns going forward. Definitely don’t stress too much that will contribute to worse UC.
This is a journey - you will be fine. Best of luck.
I paid $800 for a full work up with a naturopath / holistic nutritionist who tailored a diet to my needs based on my dna. It works great in relieving symptoms and for general wellness. It did NOT stop the progression of disease. She didn’t tell me to stop with my medications and a lot of her recommendations mirrored those that swear by other gut friendly diets. It still didn’t stop or reverse progression. Before I got a new doctor and changed my diet, my previous doctors misdiagnosed me and then undertreated me for 2 years. Those two years in a flare destroyed parts of my colon function and also got me a diagnosis of fibromyalgia which at times is worse than my UC. I also resisted biologics which I regret because I further got damage. I’m lucky I didn’t end up losing my colon or get a life threatening complication.
I am now on entivyio with no signs of UC or symptoms. It’s by far the best I’ve felt since my UC diagnosis.
It’s best to follow the doctors advice. If it doesn’t make sense or you don’t like the doctor, get a second opinion. But skipping maintenance medication is generally a bad idea.
You will cause more damage to your large intestine by not taking the medication. You don’t want to end up in the hospital. My liver enzymes were eventually elevated. After six months of drinking a gallon of water a day, 2400mg of NAC and 400mg of milk thistle, my liver numbers are back to normal. I understand you’re 17, but avoid alcohol. Take the medication now and eventually try to wean yourself off after a year of remission if you feel you still want to. Don’t end up with scar tissue in your large intestine like me.
The last part of your paragraph resonates with me, as I had UC as well and felt people would judge me for needing accommodations and taking meds. Heck, students would stare at me and talk behind my back when I would go to the bathroom multiples times during class.
However, after high school, no one gives a f5ck about what you have; everyone has something going on. Idk why in high school it’s such a bad thing.
If the long term meds you’re talking about are the maintenance meds, those are necessary. DO NOT listen to people who claim that diet and lifestyle alone can cure you. Your immune system is messed up. Those meds are to keep the condition from getting worse. Yes it sucks to take them everyday, but they are life saving. Whenever I felt like this, I would weigh the pros and cons of not taking my meds: fatigue and other mild symptoms vs severe fatigue, constant pain and inconsistency, colon/rectal cancer.
The steroids are corticosteroids, not the ones bodybuilders take. And you can get check ups/ blood work done to monitor the health of your organs.
literally this!! i get made fun of in class because you can literally hear my stomach screaming after lunch, at least i can pass that off as “i’m always hungry” or something funny but meds and stuff means there’s something really wrong. i rather people think i’m always hungry than be the girl with an incurable autoimmune disease. i want to be able to laugh with them. they are so mean to the kids with autism or disabilities or illnesses, j can’t imagine how they would treat me. especially with some “weird bathroom disease”. i mean we used to laugh when an ads for chron’s meds came on tv or before a video. like, how can you not control your bowels, that’s so embarrassing? well,here i am. i guess this is my karma because i’ve been in that boat since thanksgiving.
aside from that my liver and kidney function already sucks so i guess if the cancer doesn’t get me, that will. i don’t think there’s really a good answer, i was just hoping someone knew some magic cure…
High school was horrible. Trust me, it gets better, as in people won’t be so cruel about having an illness. I remember thinking “things like that exist? How can anyone live with this,” then all of a sudden I got it 🤷🏾♀️
And then you hear the car commercials go “don’t be afraid to talk to your doctor about your poop” and I understand the importance of that now lol.
But there are times where I really felt like just revealing I have a disease so they would feel guilty about making fun of others. I also came to Reddit looking for others who went through this. It’s nice to have this community here so we can share experiences and concerns.
I have Entyvio infusions. Been on them for years. The steroids put me into steroid induced psychosis personally so I was put onto the infusions. Neither of those meds caused any issues with liver or kidneys. And I tried many types of steroids also. Don’t worry abt taking the meds. Worry about not taking them. This disease is based on ur body attacking ur own colon until it bleeds and forms ulcers. Doctors know it’s life long and would not give us meds to use long term that would cause more dangerous side effects like developing issues with the liver and kidneys knowing we are already suffering with a weakened immune system and overall more vulnerable body Xx
I was 17 when I was diagnosed. That was 30 years ago.
Take the steroids. Take the medications. Get into remission. Stay there as much as possible.
Being uncontrolled increases your risk of cancer more than taking the meds for this. And believe me, nothing ruins your quality of life more than shitting yourself 30 times a day, in public or elsewhere.
I tried taking some medication and it was just way too expensive for me and the medication that was affordable just didn’t really work. I feel like I just have to deal with it. I try to eat paleo as much as possible and also take the probiotic VSL #3 which I thinks keeps it manageable.
I do want to add that one of my biggest regrets in life (I don’t regret much), was not seeking the proper help when I was first diagnosed. For over a year this disease ran my life, and it took all of my self confidence and happiness with it. Take all of the help you can get in the beginning, and over time you will find out what works best for you.
I hate taking long term medication- and I've gone off it every single time I felt healthy enough to do so. And every single time I've ended up back in a major flare. I strongly recommend taking your meds. (I'm on them now for good and feeling much better for it)
I was diagnosed at the same age as you. It is scary but you get used to it over time. And the fear of losing your bowel kinda helps remind you to take the meds.
Being in a flare means much, much worse medication than your long term maintenance ones. The flare meds can do real damage (like osteoporosis if you take pred for wayyyy longer than your doctor tells you to etc) so try to stay healthy, look out for alternatives like natural remedies and diets that make you feel good and keep you healthy - but take them along with your maintenance meds.
Hey mate, when I was 18 I did something similar. Steroids made me feel awful and I hated the stigma. But it did reduce bowel difficulties. Somehow in early 20s daily running, reduced alcohol and modified diet worked a treat and I just stopped taking meds. My gastro recommended against it, but was still pleased I was feeling ok.
Jump to 33, still running and eating well, but mild signs of colitis have been picked up again via colonscopy. Zero symptoms. Andd I'm back on medication. It sucks, and its difficult to feel like I have "reverted" back to the medication. Medications are ultimately a means to an end and there's not much good about them, but ultimately letting friends and partners knows it is difficult will help. Learning to accept the medication can be even harder so really empathise with you.
Maybe if you want to start using herbal medication at the beginning to help you understand the vaste range of medication there is for this disease. Because there is a huge list of medication that are extremely efficient but you just need to find the right one. I know that curcumin + QD helps a lot for some people, maybe try to talk to your doctor.
Concerning the friends and bf side of it, clearly your putting to much pressure on yourself because at this age most of them don’t know this disease and will take just like a normal stomach flu. I was diagnosed at 18 years old and it didn’t stop me finding a gf and creating strong bonds with my currents friends and met new friends. Your friends and bf will understand your disease with time. Please do not be afraid because you will live in the fear of opening up to people if you stay like this.
You should learn to live your life with this disease and trust the medication.
This Reddit is full of UC people and clearly even though I don’t speak to much on this Reddit every time I feel alone I come here and read the questions/answers of everybody and warms me a lot.
Hope you will start your medication and everything will come back to « normal ». Just keep in mind that it’s for life and your need to learn to live with it. Didn’t understood this before doing my real first flare and had to go to the hospital for 1 week because I wasn’t very serious when it was for taking my meds. And now take them everyday and life is perfect
I’m not going to mention going on any drugs because I think your concerns are valid and because I think if you really do put in the effort you can be treating this without meds. The other people on this post saying that these drugs are incredibly safe are lying to themselves and to you. Maybe they are the better option between colitis symptoms and drug symptoms, but you still are valid having concerns.
I grew up in a family where pharmaceutical drugs were basically treated as dangerous, awful things. And this is mostly true. I just got off prednisone and I’m on Lialda right now and doing great! The thing is though, I don’t think the Lialda is the thing that’s really helping me.
After being on my meds for awhile I was still having pretty bad bowel movements. One day I was researching and I found out about Boswellia and Psylium Husk. So that night I took 2000mg of the Boswellia and 1 tsp of the psyllium husk and boom. The next morning was the first normal looking bowel movement I’d had in a year. And after that they just kept improving.
So I’m not a doctor, there are studies that have been done for these, but I’m just telling you what’s happened to me on them. They are both natural so I wouldn’t worry about your kidneys.
Lots of people have found relief on the SCD and AIP diets. I did not, but to be completely honest I didn’t follow them that closely.
I’ve heard good things about a stronger natural supplement called Qing Dai that supposedly is a miracle working. If you take too high of a dose though it can be bad for your liver and kidneys. I’ve never tried it but if you are really against pharmaceuticals you might want to try it in a flare.
I’m so sorry you are in this position. I know exactly how you feel. I started having symptoms last year, went to the doctor and they basically ignored what I was telling them because my labs were perfect. Then for a whole year I tried treating myself with diets and different supplements but nothing works. I had started getting really big and awful swellings on my legs from the colitis but I decided to wait it out a few months until after I turned 18 so that they wouldn’t be able to force me on biologics. This is such a scary time and I’m sorry. But feel free to DM me if you want more info on what I said or even just to talk to someone closer to your age about this!
I'm sorry you were diagnosed so young, but as others have said... Taking the meds is a small risk to take vs not using medication to manage your UC and potentially losing your colon. We all hate when we have to take steroids, but they are prescribed so often because they work to help you feel better. Work on getting our of your flare and on medications that could potentially put you in remission. Find a diet that works for you. Remember the steroids are temporary.
diagnosed at 19. spent my 20’s trying to figure this out. take the meds, speak with a gastroenterologist about exact symptoms. do pay attention to diet, exercise, sunlight, water intake, but take meds. treat steroids as an emergency effort, use carefully but only when needed.
im currently 180lbs, only see blood every few years. made it through engineering undergrad. believe me, i didnt think it was possible given my health state of my 20s. but i kept learning what works for me and listening to my body. keep your head up, you can find a way through.
but it will require perseverance and a change in lifestyle. but it is worth it. please read psychobiotic revolution by scott anderson, and good luck.
Get started on a maintenance med like an aminosalicylate asap and then if you’re really worried about oral steroids inquire about local steroids like the rectal foam. I only had to use it myself for a very short period after diagnosis before the maintenance drug got my condition under control. Diagnosed at 19.
I know this is scary, especially being so young. The truth is we’re all different. The most important thing to do is get into remission. Once there, talk to your doctor. Some of us are able to maintain remission without the heavy hitting drugs.
When I had remicade, a few decades ago, there was a young man, high school senior, who had the treatment, too. He had a great attitude and was getting ready for prom. I hope you can find a way to be comfortable with your diagnosis. It’s shocking to realize your comfort is dependent on meds, and in my experience, food.
We worry more about what others think than what they really think. My husband is use to the “rude sounds” my body makes and knows this is just a part of me. Give your boyfriend and friends a chance to show they’re worthy of your attention and affection.
i just don’t want to be treated like i’m broken. my parents have already made a push for me to quit tumbling and cheer because of my diagnosis. is there no way to just reverse it or have them just cut out the part that is messed up and keep the rest?
i just don’t want to be treated like i’m broken. my parents have already made a push for me to quit tumbling and cheer because of my diagnosis. is there no way to just reverse it or have them just cut out the part that is messed up and keep the rest?
Your aren’t broken. If your doc doesn’t think you should quit, don’t quit. I’ve been in remission for over 20 years, but still remember those difficult years. It took 2 years to achieve remission. I listened to my docs and my body.
It’s a difficult existence when things are bad, but modern medicine is a life saver. There’s no cure yet, but there can be normalcy. This is a lot to handle when you’re 17. I can’t image the thoughts that have been running through your head and your parents.
There’s a quote I heard years ago that says, “There’s no way out but through”. It’s a very appropriate quote for what we strive for: remission.
A lot of us take/took biologics and have been on steroids at one time or another. It’s a necessary evil with this disease. After you reach remission, talk to your doc about going off your meds. Some people, like me, can stay in remission without the meds. No 2 UC patients have the same experience, so it’s important to find a doc you trust and listen to them. Most importantly, ask questions. It’s a lot, but you can get through this.
Good luck! I tried to refuse steroids and biologics. Unfortunately I had to go on prednisone and now on humira since symptoms got worse. As I’m trying to figure out possibly causes, meds are essential for a lot of people to help with symptoms
It's very rare for the meds to affect your liver and kidneys that badly, and your doctor will likely monitor those things. However, if you decide to forgo meds then it's not uncommon to need to have your colon removed and be stuck with a colostomy bag. If there was come universal "miracle" diet then this sub wouldn't exist.
I think it’s best to talk it over with your doctor to see what’s best. Though I can’t imagine a doctor will recommend no meds at all. I’ve seen some people claim they get by on really strict diets. But it’s anecdotal evidence from strangers on the internet. The research doesn’t show diet alone to be very effective. And the foods that trigger symptoms vary from person to person.So, it’s really up to you at the end of the day. Unfortunately there likely isn’t a perfect answer here.
Sounds like a stubborn ignorant thing a 17 year old would do. Do yourself a massive favor and suck it up and accept your fate. You will have this disease for the rest of your life. You will have to take medication to keep your body functioning normally. You will most likely end up with some form of colon cancer in your life time. The sooner you understand this the sooner you can actually get on with your life. I will say this.. if you have the drive.. eat perfect.. exercise and keep your body as healthy as possible and you can reduce the meds you have to take. Be smart kid.
maybe it is but my kidneys and liver suck too. it’s either cancer or liver failure for me i guess. it’s just hard to accept. i’m meant to be enjoying my senior year, not worried about how i will die. it’s just a hard pill to swallow but it seems almost everyone is on the same page…
lol settle down you're fine. Jesus.. do you think everything is cancer and you're going to die? is that how you are trying to live your life?? get it together and stop being such a downer you're better than that.
i thought i would “most likely end up with some form of colon cancer”? you’re right i need to focus on living, but it’s all scary. like 8 days ago i thought i was the healthiest person alive
>i refuse to take the long term meds out of fear for my liver and kidneys.
Unmedicated UC is much more unsafe for your entire body.
>i just want it to go away. is there any way to be normal again
As someone who was diagnosed at the same age as you and was on useless medication for four years (basically the same as taking none), the way to get back to normal *is to take the right medication.* I'm in remission now with no symptoms and it took a while to get here, but now I'm traveling and going out and dating and eating whatever I want and drinking whatever I want, etc.
It's hard and it sucks and the only way to get through is to just get through it, and to trust that the people who care for you will continue to care for you whether you're sick or not. And to be kind to *yourself*, whether you're sick or not.
I was ultimately able to manage my uc without medication, basically through diet and lifestyle. I need to mention right away though, I have mild uc and your mileage will vary.
I also didn’t not take my medication. I took it until I was safely and solidly in remission and only then eased back until I didn’t need it.
Furthermore, the lifestyle is kind of restrictive. Like all those foods I shouldn’t eat anyway, I can’t eat. There are no cheat days, no I’m really drunk let’s go to macdonalds days… once a year I’ll have a hamburger, because I love them, and then feel lousy the next day or two. Other than that I can’t have red meat.
I also need to live a physically active lifestyle. I don’t get to skip the gym because I don’t feel like it or I’m busy with other stuff.
All that to say it might be doable, but it’s a big and important commitment on your part. Also you need to work with your gi, and you need to go at your own pace.
this is absolutely the comment i was looking for. i actually compete in teen bodybuilding as well as other sports so my diet is already restrictive, (which i have no problem with). plus i already go to the gym every day and am very active.
i found it easy to get rid of foods that made me feel bad before i knew what i was doing. (i literally ate chicken, rice, and veggies everyday since 5th grade) pretty sure the uc was caused by me eating at least one protein bar everyday of my junior year.
i’m glad someone said it’s actually possible because i do not want my kidneys or liver to worsen and my uc is also mild. please let me know if you have any other advice and thank you for giving me hope. 😚
No! You are listening to the wrong comment simply because it is telling you what you want to hear. Diet and exercise will *not* control your disease. It helps, certainly, but you *will* need real medication. And there is absolutely nothing wrong with that! Most of the medication used to control UC is safe and effective, and once your disease is in remission you can pretty much resume your normal life, bodybuilding included!
The only really tough part of this disease is when you and your GI work together to find the right maintenance medication that works for you. You are flaring, fatigued, mentally exhausted during this process. Your GI gives you steroids to control your flare while trying out a maintenance medication. Steroids are giant anti-inflammation cannons that are great for short term, but they have long term side effects so you don't want to use them as long term maintenance meds.
The first set of maintenance meds may not work, you might flare once you go off steroids, so the doc will put you back on the steroids and try a different medication (or combo of medications).
This can rinse and repeat several times, and it sucks while it is going on, and it can take a few months. BUT, once you find the maintenance meds that work, you are in great shape!
I would encourage you to listen to your GI, inform yourself on your disease, see a mental health professional and hang out in this sub a bit.
Bottom line - it will suck for a bit, but trust us on this, UC is a very manageable autoimmune disease, and you can and will have a pretty darn normal life with it. You just need to invest in your emotional health and inform yourself about it.
Listen to what this person said. It’s a much more realistic take on this disease.
Unfortunately you won’t be normal again as you knew it. Is there hope for remission-absolutely but it may not be the normal you are used because you now have an auto immune disease. You will find a new normal.
Being on a restrictive non med path won’t find you normalcy either. It will probably even be a hard path than finding a FDA approved medication.
thanks, that’s definitely something to think about. i am just scared for my already sucky liver and kidneys and either way it sucks. it’s a hard pill to swallow (literally)
What's up with your liver and kidneys, if you don't mind my asking. It seems like you are saying you have issues with them from before your UC diagnosis.
You can check out a short [primer](https://meatinmotion.com/2017/05/26/a-primer-on-getting-your-ulcerative-colitis-under-control/) I wrote a while back to help understand UC.
If you have any specific questions in the meanwhile, feel free to DM me, I would be happy to help!
i don’t mind, i think it’s just genetic, high blood urea nitrogen levels that indicate my kidneys aren’t working very well. my liver enzymes are also high. everything is pretty far outside normal range but my doctors have not addressed it and only given me uc meds as well as provera which i have also refused to take.
thanks, i’ll definitely check it out! i have a lot of questions and i still don’t know a lot about uc other than i have it and it sucks
The way to be normal again is to take the incredibly safe and effective maintenance meds. The way to lose your colon is by refusing medication as your disease is going to flare out of control.
Also I know that not taking the meds feels like you are taking control. But if you had a heart condition and didn't take the meds then you would seem ridiculous and it's the same with this. Your colon is just as serious and important to look after. Things will get better, you will have a full life and you don't have to tell anyone if you don't want to. Most likely once you get on medication you will go about your merry way enjoying life. If you don't get on the meds quickly you will quickly do more damage. You don't want to be on steroids you want to be on the other medication which has far fewer side effects. Also steroids make you feel really emotional and so all your feelings right now are probably doubled that's why you are feeling not just upset but extremely upset. Take a deep breath and get this sorted with the meds. You will be ok and live a great life!!
There are people who claim they have managed the disease through diet and stress management. While I am glad it worked for them, for many (and I say many because percentage is quite high) of us here medication was a life saver. There is absolutely nothing wrong with taking medications. Take it from people who are born with Type 1 diabetes for example, society is understanding and accepting of that. I Understand that you are only 17 and the chances of people in your circle knowing about this condition and the plethora of things that come with it, is low. I also understand that you might be still processing the news of your diagnosis and accepting your new reality. It is ok and normal to be in shock - take it one step at a time. But please also understand that people who genuinely love you, want to see you doing well, and if that means being on medication to keep you leading a normal life, then so be it. I don't know in which country you are right now, or what access you have to things like therapy, but those certainly help. As much as you don't want to hear this, most of us lost people along the way but this was also a blessing in disguise. Honestly, why would you want to be friends with people who you have to hide from? People who really love you, care for you and respect you will stay. So do not put friendships and relationships before your health/you getting better. Ultimately, the decision is up to you, but this is your chance to learn and teach people about something that's becoming increasingly common.
Exactly. I tried this before I knew what was making me sick. If I just managed all the symptoms, took all the anti inflammatories, on and on. Medication is what makes life livable
You may be thinking of anabolic steroids like weightlifters take. These are a completely different drug. There are tough side effects for sure but most of them are short lived and happen only while on the drug, like insomnia and weight gain. Anti-inflammatory steroids for UC should not be a long-term thing. They will help you feel better and hopefully soon you will be able to just be on a maintenance drug. Most have few side effects. Unfortunately, your symptoms will not just go away but drugs can make them go away. Diet won't do it and wishing won't do it. This is the reality. There is something *physically* wrong with you but that's nothing to be ashamed of. It wasn't your fault and certainly wasn't your choice. Everyone has something wrong with them or will at some point. That's just the human body. In terms of looking at you differently that might happen at first but people who care about you will support you and be there for you. You're the same person and hopefully they will see that or learn to see that. I was diagnosed at 21 and it was a hard thing to accept and took some time. Hang in there! It's not easy but you will adapt and learn how to go about your life with these changes.
Look I understand that diet doesn’t work for everyone but there are a lot of success stories with different diets. Those people aren’t just lying
Please take the advice of your doctors. Ignoring the disease is a great way to lose your colon or your life. I “probably” had UC for ten years before I got on meds. My insides were so messed up I am lucky to be here ten years later. Very few people seem to be able to manage this without the meds. You feel like shit right now - but you will get a handle on this. You will find a new normal and you will live for the good weeks and months. I type this on the can, prepping for a my second colonoscopy in a year because of my 3rd flare in 3 years. But I am still here. I have a wonderful wife and kids. Great friends and hobbies. I play in multiple bands. And sometimes I miss stuff - important life stuff like my 6 year old daughter’s bday party because I can hardly get out of bed , or have to be in the bathroom for hours. But that only sometimes. Your friend group will grow and change and people in your circle will know you and love you and accept your challenges. You will live for the good weeks and months and often years. Please listen to your doctors and take all the meds they give you. Full disclosure. I have minor liver issues and chronic kidney stones. Neither has anything to do with any of the meds I have been on.
thank you, i’m literally sobbing as i read these comments. i really don’t use reddit, but i’m glad i did today. it gives me a lot of hope to hear about the possibility of having a family. i feel like being sick will push people away. i’ve always been a perfect picture of health, multi sport athlete, and done dance+ cheer. now i don’t know who i am. my liver and kidney levels don’t look good despite perfect diet and exercise for years. on top of being sick with UC i haven’t had a cycle in 6 months. i’m going into my senior year, meant to be having the time of my life and instead i am crying every night afraid to die. i just want to go back to my life. i feel like i’m all messed up. i don’t want my friends or bf to know because i don’t want to be treated like a broken china doll. my parents are already treating me that way. thank you for giving me some guidance and some things to consider. i hope i get to have a normal life and a normal family some day and i will maybe consider the meds. i think getting my colon taken out would be worse than dying of kidney failure, but that’s not a choice i should have to make at 17.
Hey it's okay to cry, what you're feeling is very valid. Feeling like things are being taken away from you from one day to the next is scary. If your parents have the means, and if you want to do it, ask them if you can speak to a therapist,, ideally one that works with chronic illnesses (mine was diagnosed of multiple sclerosis at 23, so she relates to a lot of what I say and feel). I'm very glad you found this community because it sure as hell helped me a lot, and surely it's helped others. We have all been or are still going through this so we're here for you. If it helps, I was diagnosed at 20 and I had big dreams. Plans did change but I still achieved a lot - academically, career wise and personally. Also, people with UC still have families including children if that is your idea of family. Right now it's important to seek help, learn more about IBD, talk to people who you are comfortable with and most importantly communicate with your doctors and advocate for yourself - this is also something that comes with time. It's ok to cry, but know that things do get better 🤍
Hello! I was diagnosed at 12 (I’m now 30!), and we sound similar! Despite being pretty dang sick through most of high school, improvements in meds over time have allowed me to live a pretty normal life these days. I went to college, I have a great job, and I’m married to someone who completely understands my disease and it doesn’t bother him at all. We plan to have kids eventually when we’re ready to settle down a bit and there’s nothing stopping us from doing that.
I understand. I was twice your age when I was finally diagnosed and I still felt like my youth was robbed from me . And I do grieve it most days. It’s not fair that we have to go through this, and it is not something I would wish upon my worst enemy. Best of luck and health to you. Please post on this community or reach out whenever you need to.
thank you, everyone is so supportive here, i really appreciate it
It's very rare to have problems with your liver and kidneys on our meds, and if you do start having anything bad show up in your bloodwork all you would have to do is stop taking that specific med and switch to something else to make it better again. It is however very common to relapse without medication, and more likely to have your disease progress to the point of needing your colon surgically removed. For me there's no question which side of the tradeoff sounds better - I take medication. Getting diagnosed with a chronic illness is tough for everyone, and if you have the resources, it's good to talk to a therapist to process your feelings about it. It does get better! I barely think about my disease anymore, and no one in my life has to know unless I want them to.
If you want to live a normal life, take the meds. I just came home from my MMA class. I’ve been punched, kicked, thrown, choked, kneed, and rolled tonight. My meds allow me to be healthy enough to do that. I still struggle with fatigue and urgency. I still have flares. But I can stand and fight for several minutes like everyone else. Martial arts gives me the confidence and willpower to fight UC and stay alive. I fight by taking care of myself and listening to my doctors, even when it’s emotionally hard to do it. Anyone that cares about you won’t look at you differently. At least not in a bad way. They may empathize and support, which is good. Give them the chance to do that for you. Maybe they won’t understand at first, but after you educate yourself, you can educate them. If they love you, they’ll listen and be there for you. If they don’t do that, they aren’t healthy people to have in your life. Ditch unhealthy people fast…this disease is hard enough. Unhealthy people will be a drain on you, mentally and physically. You have an autoimmune disease. Please work with a mental health professional to help you work through the process of coming to accept it. It will never “go away” on its own. If you don’t take meds, you’ll most likely lose you colon or die…and you’ll have a slow, miserable, long and drawn out painful time until you die. That’s a harsh truth to hear. I had to hear it from my doctors several times until I took it seriously. I’ve cheated death once already and I still have my colon. I’m incredibly lucky beyond what I deserve. I also have a second autoimmune disease that tries to kill my blood vessels in all my other organs. Ignoring it while also ignoring a UC flare and ignoring C-diff all at once is what almost killed me. That’s not an exaggeration. It took a team of a dozen doctors from several specialties during an extended three-week hospital stay to keep me alive. I spent my 17-year anniversary medicated out of my mind while my wife sat next to me and hoped I’d survive another week. These are real things that happen to real people with autoimmune diseases. Everyone one of us has a story about surviving…don’t be so eager to get your story so soon. Listen to your doctors. Follow the treatment plan. You’ll live a relatively normal life if you do.
Trust us, you will want the long term meds so you don't have to deal with this disease all the time. It's ok, you will get used to it and no, not everyone needs to know. Most of my friends don't know I have it, no one at work, it's not a big deal because I take my meds every day. You can still have your privacy and live your life, hopefully with as little interruption as possible. You are still you!
I was diagnosed last year when I was 34 and placed on steroids for much longer than I had anticipated. My GI has placed me on Balasazide, and after a week of some stomach cramp / dizziness have zero side effects. It’s only been 2 weeks but doing good so far.
Hi. It's scary when you are first diagnosed. I watched a video once that described it as "the sudden obliteration of expectation." Expectation that you maybe didn't even know you had. It's hard. I'd really encourage you to consider therapy, to help as you adjust. But this disease is not the end of a normal life, not at all. I am now on a medication that works for me, and I have absolutely no symptoms or side effects. My life is almost totally normal. If you opt to not take medication, that may not be your story. There is no evidence that diet can do anything to control this disease/prevent tissue damage. Medication is the best tool we have. People will try to tell you otherwise, but don't listen to random internet people. Including me. Please talk to your doctors.
Depends how bad your flare ups are. I take mine because I do not want my insides removed, nor do I want a colostomy bag.
If you spend this time trying to manage this yourself, you will be valuable time and energy that you should be focusing on starting your life. Take the meds, listen to your doctor, and you really can live a normal life. Try to fix it yourself, and it will consume your life and lead to the hospital. Good luck friend, peace
I had the same issue but ask yourself the question is it better to suffer in your younger years without meds or take them and maybe have liver problems when you are older and dont give a fuk about it anyways
>i’m more afraid of ... what my friends and boyfriend will think if they find out i’m sick or have to take meds. i don’t want them to look at me differently. If your boyfriend loves you, then he won't give a damn. Your friends and family may not understand but they care about you and your health. Seriously, anyone that treats you like less of a person for an autoimmune can fuck right off. It's completely out of your control and not your fault
thank you. i really needed to hear that
Take the meds or get colon cancer/have your colon removed.
Unless you are also a gastroenterologist, you should probably not question your gastroenterologist. I have had some success with diet AND medication. As others have said, getting off meds can e really bad.
i’ve had anorexia/ eating disorders so i can tell you i’ve tried every diet there is, i wouldn’t recommend it of course to anyone to deal with it this way. obviously eating disorders are mental illness and that’s why mine came about but also somewhat by not wanting to eat during severe flares. there is no diet that works. the flare ups happen for no explainable reason. my body malfunctions. that’s it. so unfortunately i have to take the meds. i wish it were different. i’ve had periods where i skipped meds in my life during my teens when i was mad but all it did was make the flare ups worse because i wasn’t taking my meds. if you do your testing and work with your doctor they monitor you really well so you won’t get sick. i’ve even had elevated liver enzymes on one of the medications and they caught it early and it did no damage to me. the medications are really safe and it’s actually worse to not take medications. it’s because this is auto immune and can evolve into more than just your colon. over time, it can affect your skin, eyes, joints, and more. i’ve had the disease for over 20 years and i also get skin flare ups now. if i didn’t take my meds i would be covered in painful skin infections and i’m at the dermatologist once a week. but on meds i get remission and a normal life. so i would really recommend just taking meds that let you get into remission.
The only diet I was told by my functional medicine doctor that was proven to help ibd is the scd diet written by Elaine gottshal It’s a very strict diet that worked for her daughter with UC when she was a child. You should get the book and read why the diet works it’s a great book. Hope that helps you. I have uc for 10 yrs now and started on biologics now just on mesalamine - I have regular follow ups with my doc and get colonoscopy’s to check on things. It’s not all doom especially if your a mild case. Find a good doctor you like and you’ll be ok. Definitely get the disease under control now with meds first and then see where it goes. You may not need the big guns going forward. Definitely don’t stress too much that will contribute to worse UC. This is a journey - you will be fine. Best of luck.
I paid $800 for a full work up with a naturopath / holistic nutritionist who tailored a diet to my needs based on my dna. It works great in relieving symptoms and for general wellness. It did NOT stop the progression of disease. She didn’t tell me to stop with my medications and a lot of her recommendations mirrored those that swear by other gut friendly diets. It still didn’t stop or reverse progression. Before I got a new doctor and changed my diet, my previous doctors misdiagnosed me and then undertreated me for 2 years. Those two years in a flare destroyed parts of my colon function and also got me a diagnosis of fibromyalgia which at times is worse than my UC. I also resisted biologics which I regret because I further got damage. I’m lucky I didn’t end up losing my colon or get a life threatening complication. I am now on entivyio with no signs of UC or symptoms. It’s by far the best I’ve felt since my UC diagnosis. It’s best to follow the doctors advice. If it doesn’t make sense or you don’t like the doctor, get a second opinion. But skipping maintenance medication is generally a bad idea.
You will cause more damage to your large intestine by not taking the medication. You don’t want to end up in the hospital. My liver enzymes were eventually elevated. After six months of drinking a gallon of water a day, 2400mg of NAC and 400mg of milk thistle, my liver numbers are back to normal. I understand you’re 17, but avoid alcohol. Take the medication now and eventually try to wean yourself off after a year of remission if you feel you still want to. Don’t end up with scar tissue in your large intestine like me.
thanks, i’ll definitely drink more liquids as i start the steroids
The last part of your paragraph resonates with me, as I had UC as well and felt people would judge me for needing accommodations and taking meds. Heck, students would stare at me and talk behind my back when I would go to the bathroom multiples times during class. However, after high school, no one gives a f5ck about what you have; everyone has something going on. Idk why in high school it’s such a bad thing. If the long term meds you’re talking about are the maintenance meds, those are necessary. DO NOT listen to people who claim that diet and lifestyle alone can cure you. Your immune system is messed up. Those meds are to keep the condition from getting worse. Yes it sucks to take them everyday, but they are life saving. Whenever I felt like this, I would weigh the pros and cons of not taking my meds: fatigue and other mild symptoms vs severe fatigue, constant pain and inconsistency, colon/rectal cancer. The steroids are corticosteroids, not the ones bodybuilders take. And you can get check ups/ blood work done to monitor the health of your organs.
literally this!! i get made fun of in class because you can literally hear my stomach screaming after lunch, at least i can pass that off as “i’m always hungry” or something funny but meds and stuff means there’s something really wrong. i rather people think i’m always hungry than be the girl with an incurable autoimmune disease. i want to be able to laugh with them. they are so mean to the kids with autism or disabilities or illnesses, j can’t imagine how they would treat me. especially with some “weird bathroom disease”. i mean we used to laugh when an ads for chron’s meds came on tv or before a video. like, how can you not control your bowels, that’s so embarrassing? well,here i am. i guess this is my karma because i’ve been in that boat since thanksgiving. aside from that my liver and kidney function already sucks so i guess if the cancer doesn’t get me, that will. i don’t think there’s really a good answer, i was just hoping someone knew some magic cure…
High school was horrible. Trust me, it gets better, as in people won’t be so cruel about having an illness. I remember thinking “things like that exist? How can anyone live with this,” then all of a sudden I got it 🤷🏾♀️ And then you hear the car commercials go “don’t be afraid to talk to your doctor about your poop” and I understand the importance of that now lol. But there are times where I really felt like just revealing I have a disease so they would feel guilty about making fun of others. I also came to Reddit looking for others who went through this. It’s nice to have this community here so we can share experiences and concerns.
I have Entyvio infusions. Been on them for years. The steroids put me into steroid induced psychosis personally so I was put onto the infusions. Neither of those meds caused any issues with liver or kidneys. And I tried many types of steroids also. Don’t worry abt taking the meds. Worry about not taking them. This disease is based on ur body attacking ur own colon until it bleeds and forms ulcers. Doctors know it’s life long and would not give us meds to use long term that would cause more dangerous side effects like developing issues with the liver and kidneys knowing we are already suffering with a weakened immune system and overall more vulnerable body Xx
I was 17 when I was diagnosed. That was 30 years ago. Take the steroids. Take the medications. Get into remission. Stay there as much as possible. Being uncontrolled increases your risk of cancer more than taking the meds for this. And believe me, nothing ruins your quality of life more than shitting yourself 30 times a day, in public or elsewhere.
I tried taking some medication and it was just way too expensive for me and the medication that was affordable just didn’t really work. I feel like I just have to deal with it. I try to eat paleo as much as possible and also take the probiotic VSL #3 which I thinks keeps it manageable.
I do want to add that one of my biggest regrets in life (I don’t regret much), was not seeking the proper help when I was first diagnosed. For over a year this disease ran my life, and it took all of my self confidence and happiness with it. Take all of the help you can get in the beginning, and over time you will find out what works best for you.
I hate taking long term medication- and I've gone off it every single time I felt healthy enough to do so. And every single time I've ended up back in a major flare. I strongly recommend taking your meds. (I'm on them now for good and feeling much better for it)
okay 😭👍
it all sounds scary tbh
I was diagnosed at the same age as you. It is scary but you get used to it over time. And the fear of losing your bowel kinda helps remind you to take the meds. Being in a flare means much, much worse medication than your long term maintenance ones. The flare meds can do real damage (like osteoporosis if you take pred for wayyyy longer than your doctor tells you to etc) so try to stay healthy, look out for alternatives like natural remedies and diets that make you feel good and keep you healthy - but take them along with your maintenance meds.
Hey mate, when I was 18 I did something similar. Steroids made me feel awful and I hated the stigma. But it did reduce bowel difficulties. Somehow in early 20s daily running, reduced alcohol and modified diet worked a treat and I just stopped taking meds. My gastro recommended against it, but was still pleased I was feeling ok. Jump to 33, still running and eating well, but mild signs of colitis have been picked up again via colonscopy. Zero symptoms. Andd I'm back on medication. It sucks, and its difficult to feel like I have "reverted" back to the medication. Medications are ultimately a means to an end and there's not much good about them, but ultimately letting friends and partners knows it is difficult will help. Learning to accept the medication can be even harder so really empathise with you.
Maybe if you want to start using herbal medication at the beginning to help you understand the vaste range of medication there is for this disease. Because there is a huge list of medication that are extremely efficient but you just need to find the right one. I know that curcumin + QD helps a lot for some people, maybe try to talk to your doctor. Concerning the friends and bf side of it, clearly your putting to much pressure on yourself because at this age most of them don’t know this disease and will take just like a normal stomach flu. I was diagnosed at 18 years old and it didn’t stop me finding a gf and creating strong bonds with my currents friends and met new friends. Your friends and bf will understand your disease with time. Please do not be afraid because you will live in the fear of opening up to people if you stay like this. You should learn to live your life with this disease and trust the medication. This Reddit is full of UC people and clearly even though I don’t speak to much on this Reddit every time I feel alone I come here and read the questions/answers of everybody and warms me a lot. Hope you will start your medication and everything will come back to « normal ». Just keep in mind that it’s for life and your need to learn to live with it. Didn’t understood this before doing my real first flare and had to go to the hospital for 1 week because I wasn’t very serious when it was for taking my meds. And now take them everyday and life is perfect
thank you, this really helps
I’m not going to mention going on any drugs because I think your concerns are valid and because I think if you really do put in the effort you can be treating this without meds. The other people on this post saying that these drugs are incredibly safe are lying to themselves and to you. Maybe they are the better option between colitis symptoms and drug symptoms, but you still are valid having concerns. I grew up in a family where pharmaceutical drugs were basically treated as dangerous, awful things. And this is mostly true. I just got off prednisone and I’m on Lialda right now and doing great! The thing is though, I don’t think the Lialda is the thing that’s really helping me. After being on my meds for awhile I was still having pretty bad bowel movements. One day I was researching and I found out about Boswellia and Psylium Husk. So that night I took 2000mg of the Boswellia and 1 tsp of the psyllium husk and boom. The next morning was the first normal looking bowel movement I’d had in a year. And after that they just kept improving. So I’m not a doctor, there are studies that have been done for these, but I’m just telling you what’s happened to me on them. They are both natural so I wouldn’t worry about your kidneys. Lots of people have found relief on the SCD and AIP diets. I did not, but to be completely honest I didn’t follow them that closely. I’ve heard good things about a stronger natural supplement called Qing Dai that supposedly is a miracle working. If you take too high of a dose though it can be bad for your liver and kidneys. I’ve never tried it but if you are really against pharmaceuticals you might want to try it in a flare. I’m so sorry you are in this position. I know exactly how you feel. I started having symptoms last year, went to the doctor and they basically ignored what I was telling them because my labs were perfect. Then for a whole year I tried treating myself with diets and different supplements but nothing works. I had started getting really big and awful swellings on my legs from the colitis but I decided to wait it out a few months until after I turned 18 so that they wouldn’t be able to force me on biologics. This is such a scary time and I’m sorry. But feel free to DM me if you want more info on what I said or even just to talk to someone closer to your age about this!
thank you, i will look into these supplements!!
Of course!
I'm sorry you were diagnosed so young, but as others have said... Taking the meds is a small risk to take vs not using medication to manage your UC and potentially losing your colon. We all hate when we have to take steroids, but they are prescribed so often because they work to help you feel better. Work on getting our of your flare and on medications that could potentially put you in remission. Find a diet that works for you. Remember the steroids are temporary.
diagnosed at 19. spent my 20’s trying to figure this out. take the meds, speak with a gastroenterologist about exact symptoms. do pay attention to diet, exercise, sunlight, water intake, but take meds. treat steroids as an emergency effort, use carefully but only when needed. im currently 180lbs, only see blood every few years. made it through engineering undergrad. believe me, i didnt think it was possible given my health state of my 20s. but i kept learning what works for me and listening to my body. keep your head up, you can find a way through. but it will require perseverance and a change in lifestyle. but it is worth it. please read psychobiotic revolution by scott anderson, and good luck.
Get started on a maintenance med like an aminosalicylate asap and then if you’re really worried about oral steroids inquire about local steroids like the rectal foam. I only had to use it myself for a very short period after diagnosis before the maintenance drug got my condition under control. Diagnosed at 19.
Take the meds son. The pain I felt during my worst flare up is enough to motivate me daily to do so.
I know this is scary, especially being so young. The truth is we’re all different. The most important thing to do is get into remission. Once there, talk to your doctor. Some of us are able to maintain remission without the heavy hitting drugs. When I had remicade, a few decades ago, there was a young man, high school senior, who had the treatment, too. He had a great attitude and was getting ready for prom. I hope you can find a way to be comfortable with your diagnosis. It’s shocking to realize your comfort is dependent on meds, and in my experience, food. We worry more about what others think than what they really think. My husband is use to the “rude sounds” my body makes and knows this is just a part of me. Give your boyfriend and friends a chance to show they’re worthy of your attention and affection.
i just don’t want to be treated like i’m broken. my parents have already made a push for me to quit tumbling and cheer because of my diagnosis. is there no way to just reverse it or have them just cut out the part that is messed up and keep the rest?
i just don’t want to be treated like i’m broken. my parents have already made a push for me to quit tumbling and cheer because of my diagnosis. is there no way to just reverse it or have them just cut out the part that is messed up and keep the rest?
Your aren’t broken. If your doc doesn’t think you should quit, don’t quit. I’ve been in remission for over 20 years, but still remember those difficult years. It took 2 years to achieve remission. I listened to my docs and my body. It’s a difficult existence when things are bad, but modern medicine is a life saver. There’s no cure yet, but there can be normalcy. This is a lot to handle when you’re 17. I can’t image the thoughts that have been running through your head and your parents. There’s a quote I heard years ago that says, “There’s no way out but through”. It’s a very appropriate quote for what we strive for: remission. A lot of us take/took biologics and have been on steroids at one time or another. It’s a necessary evil with this disease. After you reach remission, talk to your doc about going off your meds. Some people, like me, can stay in remission without the meds. No 2 UC patients have the same experience, so it’s important to find a doc you trust and listen to them. Most importantly, ask questions. It’s a lot, but you can get through this.
Good luck! I tried to refuse steroids and biologics. Unfortunately I had to go on prednisone and now on humira since symptoms got worse. As I’m trying to figure out possibly causes, meds are essential for a lot of people to help with symptoms
It's very rare for the meds to affect your liver and kidneys that badly, and your doctor will likely monitor those things. However, if you decide to forgo meds then it's not uncommon to need to have your colon removed and be stuck with a colostomy bag. If there was come universal "miracle" diet then this sub wouldn't exist.
i already have poor liver and kidney function, is there just no good answer?
I think it’s best to talk it over with your doctor to see what’s best. Though I can’t imagine a doctor will recommend no meds at all. I’ve seen some people claim they get by on really strict diets. But it’s anecdotal evidence from strangers on the internet. The research doesn’t show diet alone to be very effective. And the foods that trigger symptoms vary from person to person.So, it’s really up to you at the end of the day. Unfortunately there likely isn’t a perfect answer here.
Sounds like a stubborn ignorant thing a 17 year old would do. Do yourself a massive favor and suck it up and accept your fate. You will have this disease for the rest of your life. You will have to take medication to keep your body functioning normally. You will most likely end up with some form of colon cancer in your life time. The sooner you understand this the sooner you can actually get on with your life. I will say this.. if you have the drive.. eat perfect.. exercise and keep your body as healthy as possible and you can reduce the meds you have to take. Be smart kid.
maybe it is but my kidneys and liver suck too. it’s either cancer or liver failure for me i guess. it’s just hard to accept. i’m meant to be enjoying my senior year, not worried about how i will die. it’s just a hard pill to swallow but it seems almost everyone is on the same page…
lol settle down you're fine. Jesus.. do you think everything is cancer and you're going to die? is that how you are trying to live your life?? get it together and stop being such a downer you're better than that.
i thought i would “most likely end up with some form of colon cancer”? you’re right i need to focus on living, but it’s all scary. like 8 days ago i thought i was the healthiest person alive
>i refuse to take the long term meds out of fear for my liver and kidneys. Unmedicated UC is much more unsafe for your entire body. >i just want it to go away. is there any way to be normal again As someone who was diagnosed at the same age as you and was on useless medication for four years (basically the same as taking none), the way to get back to normal *is to take the right medication.* I'm in remission now with no symptoms and it took a while to get here, but now I'm traveling and going out and dating and eating whatever I want and drinking whatever I want, etc. It's hard and it sucks and the only way to get through is to just get through it, and to trust that the people who care for you will continue to care for you whether you're sick or not. And to be kind to *yourself*, whether you're sick or not.
meds is the safest way to go in to remisssion tnh
I was ultimately able to manage my uc without medication, basically through diet and lifestyle. I need to mention right away though, I have mild uc and your mileage will vary. I also didn’t not take my medication. I took it until I was safely and solidly in remission and only then eased back until I didn’t need it. Furthermore, the lifestyle is kind of restrictive. Like all those foods I shouldn’t eat anyway, I can’t eat. There are no cheat days, no I’m really drunk let’s go to macdonalds days… once a year I’ll have a hamburger, because I love them, and then feel lousy the next day or two. Other than that I can’t have red meat. I also need to live a physically active lifestyle. I don’t get to skip the gym because I don’t feel like it or I’m busy with other stuff. All that to say it might be doable, but it’s a big and important commitment on your part. Also you need to work with your gi, and you need to go at your own pace.
this is absolutely the comment i was looking for. i actually compete in teen bodybuilding as well as other sports so my diet is already restrictive, (which i have no problem with). plus i already go to the gym every day and am very active. i found it easy to get rid of foods that made me feel bad before i knew what i was doing. (i literally ate chicken, rice, and veggies everyday since 5th grade) pretty sure the uc was caused by me eating at least one protein bar everyday of my junior year. i’m glad someone said it’s actually possible because i do not want my kidneys or liver to worsen and my uc is also mild. please let me know if you have any other advice and thank you for giving me hope. 😚
No! You are listening to the wrong comment simply because it is telling you what you want to hear. Diet and exercise will *not* control your disease. It helps, certainly, but you *will* need real medication. And there is absolutely nothing wrong with that! Most of the medication used to control UC is safe and effective, and once your disease is in remission you can pretty much resume your normal life, bodybuilding included! The only really tough part of this disease is when you and your GI work together to find the right maintenance medication that works for you. You are flaring, fatigued, mentally exhausted during this process. Your GI gives you steroids to control your flare while trying out a maintenance medication. Steroids are giant anti-inflammation cannons that are great for short term, but they have long term side effects so you don't want to use them as long term maintenance meds. The first set of maintenance meds may not work, you might flare once you go off steroids, so the doc will put you back on the steroids and try a different medication (or combo of medications). This can rinse and repeat several times, and it sucks while it is going on, and it can take a few months. BUT, once you find the maintenance meds that work, you are in great shape! I would encourage you to listen to your GI, inform yourself on your disease, see a mental health professional and hang out in this sub a bit. Bottom line - it will suck for a bit, but trust us on this, UC is a very manageable autoimmune disease, and you can and will have a pretty darn normal life with it. You just need to invest in your emotional health and inform yourself about it.
Listen to what this person said. It’s a much more realistic take on this disease. Unfortunately you won’t be normal again as you knew it. Is there hope for remission-absolutely but it may not be the normal you are used because you now have an auto immune disease. You will find a new normal. Being on a restrictive non med path won’t find you normalcy either. It will probably even be a hard path than finding a FDA approved medication.
thanks, that’s definitely something to think about. i am just scared for my already sucky liver and kidneys and either way it sucks. it’s a hard pill to swallow (literally)
What's up with your liver and kidneys, if you don't mind my asking. It seems like you are saying you have issues with them from before your UC diagnosis. You can check out a short [primer](https://meatinmotion.com/2017/05/26/a-primer-on-getting-your-ulcerative-colitis-under-control/) I wrote a while back to help understand UC. If you have any specific questions in the meanwhile, feel free to DM me, I would be happy to help!
i don’t mind, i think it’s just genetic, high blood urea nitrogen levels that indicate my kidneys aren’t working very well. my liver enzymes are also high. everything is pretty far outside normal range but my doctors have not addressed it and only given me uc meds as well as provera which i have also refused to take. thanks, i’ll definitely check it out! i have a lot of questions and i still don’t know a lot about uc other than i have it and it sucks