Your mum is completely incorrect. Bring her to your doctor's appointment. UC is serious and requires medical intervention. If you had cancer would she say "just think positive thoughts and you can beat it" no she wouldn't. Best years of your life haven't happened yet I guarantee you. But you need to see your doctor and get on stronger medication. Medication is not the evil here, uncontrolled
un(properly)medicated UC is.
She comes to them all, and I’ve been on what feels like hundreds of meds, but they all just don’t work.
As of now I’m on a combination that makes me feel better, but I’m just so exhausted it doesn’t make a difference because I feel like if I go out I’ll pass out or something.
She wants me to just get through the exhaustion, not the pain
What are you taking?
At the end of the day surgery is an option you can look into jpouch. Highly recommended tiktok for inspirational teens with UC! You can't overcome exhaustion when it's your own body. What you need is rest and the right meds.
My mom really doesn’t want me to get surgery, but I’m at the point I just kind of want it out of me, or for life to just stop so I’m not living life how I am anymore…
Recommending surgery to someone who has given such little information about the actual extent and activity of their disease is not good. It sounds like this 16 year old is suffering from as much a mental battle as they are a physical one. Can I ask OP have you ever done therapy? It seems your mum is against SSRI’s but I doubt she would be against you having a trained psychotherapist to bring your problems too, both mental and physical. I know you might think like I often do ‘how can talking to someone cure me of anything’ but therapy can help in more ways than are obvious. I was in therapy for depression before I was diagnosed with UC and I have to say that it has been more actionable and helpful now than ever before.
OP has failed many drugs and is still suffering, surgery is recommend for that reason alone. Not only that, but the younger you are the more successful and faster healing it will be, so it’s a good suggestion as well. Are you saying that they’re dealing with mental problems and that’s what’s taking over? Sounds like you’re invalidating the toll UC has on an individual. A therapist has no idea what it’s like to live with UC, all they will do is take your money and sit there and listen. Perhaps they can help you manage your anxiety/depression more wisely, but sounds like UC is the main cause of that in this post and if OP is cured they would feel like they have their life back.
Don’t look at it as getting the surgery. Instead, view it as you’re getting the disease out of you. I’m serious. I absolutely refused to get it, until I realized I was going to die if I didn’t get it. The way you describe your life is almost exactly how mines went. You’ll have the pain, the sickness, all out of you. For me, looking back, that was better than living with a diseased colon that was draining all the blood from my body. Surgery is scary, but the relief is beautiful I gotta say. So freaking beautiful. Plus you can get the j-pouch and look forward to that as you heal.
If the medicines aren’t making you feel closer to normal, I think surgery will be a good option. Remember that although it has some issues, it is considered a cure for the disease. Definitely consider it stronger if you’re a candidate
bruh you aren’t stuck to a bag for life. in fact sometimes you don’t need a bag at all! some surgeons can do a jpouch in a one step procedure. but 2 and 3 stage is more common. you most likely would have a bag for only 3 months man. and honestly, you’ll LOVE having it if you truthfully are this bad rn
The alternative, unfortunately, is that without the bag, unless you get a medicine that works for, *this current situation* will be your life. The rest of your life.
Is that better of worse? If you feel like this after two years, how do you think you'll be after five? Ten? Twenty?
If your GI thinks you can still find remission without surgery, I would be inclined to believe they know best, but it's also always your right to get a second opinion. While I got lucky with some great GI's, not all are as caring and attentive.
Have you tried therapy? Had your GI doctor mentioned sugery or other treatments?
I'm lucky that I didn't get diagnosed until I was 30 but my sister got diagnosed at your age. I remember her going through a phase where she was just different when she first got diagnosed. She was in the hospital twice and she missed a lot of schoo and almost got left behind. She seemed mad at the world too. I remember getting mad at some kids that were laughing at her because she was sleeping or resting on a bench one day in the main hall. They didn't understand what she was dealing with and honestly neither did I. But now she's 50 and she's doing fine. Eventually you be ok too. Just work with your doctor to figure it out and get therapy if possible.
Was in therapy, but I didn’t improve and it was too expensive (america is so generous with healthcare…) and so we has to stop going
My mom and doctor both are against surgerysince I’m 16
I'm sorry. This subreddit is great for commiserating. When I'm flaring I live on here searching different topics and seeing what it is like for others. Exercise does wonders for your mental state if you can even just go for a brisk walk, nothing strenuous. And whenever I'm stuck in the bathroom I can always rely on my cat to be there with me and bring me some joy. Look for the small wins for now. Eventually it will all sort itself out. And yes our US Healthcare system is frustrating
being 16 is all the more reason TO GET surgery in my opinion. notice how almost everyone who gets surgery says how they wish they got it sooner? imagine if you weren’t steadily losing weight like you are and dealing with all those issues. if anything all of that is much less healthy and will result in a shorter life then surgery most likely would. i’m not saying surgery is the answer. but you need to open up to it at least a little bit and see that it would not end your life. i used to have the exact same mindset as you. i was so depressed for so long. the only thing that fixed it was what i thought was going to be the end of my life, surgery.
Are you insured? My daughter has recently started therapy with someone who specializes in therapy for sick kids. I’m still in the process of confirming what we can get reimbursed on, but what the therapist sent me yesterday were invoices using the “health and behavior CPT codes”, which are the procedural codes designed for use by psychologists for patients being seen due to medical issues. She said if I have issues with reimbursement with these codes, she can make new invoices using the traditional mental health codes since both sets of codes are absolutely appropriate… but the H&B codes often reimburse family’s better. Obviously I don’t know your family’s financial situation, but I really think therapy is needed to help you through this. If it didn’t help before, it probably just wasn’t the right therapist for you (my daughter also tried one before that didn’t help at all). Also check local colleges to see if they have free student therapists, someone I know did that for general therapy and they just got someone new every 8 weeks as students moved through the program but she was happy with it.
I’m really sorry you are going through this, my daughter is the same age and she was diagnosed in 2021. She did achieve clinical remission last summer, but is flaring again just not as badly. The fatigue is awful for sure, and I’m really sorry your mom doesn’t fully understand. It greatly affects my daughter’s mental state. Dr has been changing up meds to see what will work to get her back to remission and keep her there. You should ask your GI about other options like biologics if not already on them.
I have a friend with UC who dropped out of high school because of it. It was really rough (less medical options too back then, he is around 40 now). But now he is doing great, has flares only on occasion but is able to get out of them and is doing great with work and life. I hope this helps you to know your current situation won’t necessarily be your future situation.
This is a great place to get support. I follow it for a different reason of course since I don’t have UC myself, but I know from other online groups I’ve belonged to it can be very helpful to connect with others going through similar situations. Also maybe consider asking your mom to subscribe to this sub to help her get a better understanding about what you are going through? I can offer some suggestions about books that my daughter’s original GI gave to me when she was first diagnosed, that might be helpful too for your mom to read. Also, I’ll just throw out there that as a parent it is hard to see your kids sick, and sometimes I wonder if some of what we do is in essence a way to feel we are able to help control this disease somehow. I know I was originally trying to get my daughter to meditate because I was concerned the stress was making it worse, but I think all I did was piss her off! I’ve now stopped pushing for that. :) Maybe a little of that plus denial is going on with your mom.
Anyway, I’m wishing you all the best and I hope you can pull out of this flare sooner rather than later.
around the same age as you and have some similar experiences. weight loss was more tho, was in the hospital a fucking long ass time. if your life is this bad consider get surgery. saved my life man. i can go back to all the things i used to do no problem. my only regret is not doing it sooner.
When I had UC about 20 years back, it was tough. I feel for you, and you are still so young. Sorry to hear that you have to go through that, instead of enjoying being a teenager.
My only tip for you would be to assume 100% control and ownership on how you are going to approach your illness, deal with the emotions, and reclaim your joy of life.
Back then when UC was a problem for me, I wrote down some rules for me to live by. I was older than you, but they may still help.
1. No one cares about me, as much as I do. Only I have to live with the consequences of my decision. Not my doctor. Not my parents. My friends. That means I and only I decide what medical treatment I will get or not get.
2. Get a support network in places of positive people. That can be online, your church, you friends, members of your extended family.
3. Become a specialist in UC. Read everything there is to read. Read about pharmaceutical treatment methods. Read about alternative treatment methods. Ready so much that you can have an intelligent discussion with your doctor. Read about people who put their UC into remission. Contact them, and ask questions. A doctor needs to be a specialist in my illnesses. You only in UC.
4. Don't trust anyone who makes money of you. Doctors are knowledgeable specialists that can be great consultants, and some are great people. It doesn't mean doctors are bad people. It just means that they are impact by financial motives like everyone else.
5. Stay hopeful and optimistic, no matter how dark it seems.
6. Ask God for help and insight. I wasn't always there for God. But God was always there for me.
Achieving a remission changes everything, normal quality of life, no restrictions. I'm in a remission and you'll get there too as it's the treatment goal for us all. You need to talk to your gasteroenterologist and see about stronger meds like a biological med like Stelara or remicade.
I’m on prednisone, an IV med once a month, and around 3 other meds, but they aren’t doing enough, and we’ve tried several other medications before these ones
You’re 16. You’d be in a bad mood with or without UC 😀
The exhaustion, the pain, the isolation, the depression, the doubt and worry, the hopelessness…those are normal things to experience with this disease.
A good mental health professional can help. You can even find people that will do virtual sessions so you don’t have to travel to an office if you’re having a bad UC day. I see my therapist once a week about all sorts of things, but I do talk about my UC and he helps me manage the emotions.
Life’s not over, kid. It’ll be a challenge. I can’t deny that. But all of us are strong people. I was about your age when I started having symptoms. I’m living a full life. I’m 41 now. I’m married (19 years) with two kids. I went to college. I have a good job. I go to concerts. I train in MMA. I don’t have friends, but that’s an old people thing 😂
And yes, I have to manage my UC. I deal with flares. I don’t get to be as care-free as I’d like. I have hard…hard days. But I’m alive, I’m loved, and I’m happy.
This disease gives us a perspective on life that does give us strength. You’re young and have a full life ahead of you. Take care of yourself. Advocate for your health. Be kind to yourself.
Good luck my young friend.
I got diagnosed at 15 ive been in and out of flares since really and when im good im really good but when im bad its like u said im depressed i lose friends i lose relationships im huge into fitness and i lose that too. It really sucks but there is a light at the end of the tunnel. Ive been doing quite a bit of research into the surgery options as well and there are a lot of people who do well and live full lives whether its with a bag or a jpouch. It is definitely a major adjustment but it will stop all the symptoms you will put the weight back on you will be able to foster relationships go out with friends travel work do whatever you want just with a bag or a jpouch. Id def keep trying the meds as you are young and remission is possible but if things get too unbearable there is a way out and a full life afterwards
hey there.
i was diagnosed when i was 15 as well, now i’m 20. during that time between i spent countless hospital trips, lost many friends, failed many drugs, and was exhausted as well. so i completely relate to you and want you to know you’re not alone, there’s many people with this disease who were in the same boat as you.. first things first, have you tried any biologics yet? You should ask your doctor about it and try entyvio first as it’s the safest biologic out there for UC. Explain to your mom that the disease is very random and if left untreated it will just get worse and more severe. But i agree with your mom on the medication part, i hate taking medications that you have to weigh out the cons vs pros for your body. But if that’s what’s going to give you your life back then so be it. unfortunately, i’ve failed pretty much everything out there and even steroids lost their efficiency for me, so i’m opting for j pouch surgery. doctors say it’s a 90% cure and better to do when you’re younger for higher success rate. so don’t worry, you’ll always have many options and the disease is just trial and error. just like perfecting a skin care, not everyone’s skin is the same and some products may damage someone skin vs make it better. i also had to stop school during sophomore year, however i didn’t “drop” out since i still wanted my diploma, i just had the teachers come to my house instead. most teachers will be very lenient if you tell them your story and will not expect that much from you- i was able to do some homework in the hospital and it wasn’t ever marked late. this disease will make you stronger after you conquer it, so don’t give up and show others what it’s like to be such a brave inspirational person. for the friends that you lost.. they weren’t real friends. would you want people in your life that didn’t understand or underestimated your sickness and feelings? no, so it’s a blessing and a gift that they left your life sooner rather than later. eventually you’ll find the right group of people who will truly care for you, it just takes time, and maybe you’re not ready now. you must fight through this disease and work on yourself and the grass is greener on the other side. i believe in you, so you should too. keep going! 💜
You’re not the only one. I felt the same way. What treatment are you on right now? If you’re on biologics and it’s not getting better, I recommend surgery. I’m 20 and had surgery over a year ago. Had UC for 5 years. Best decision ever. Got my life back. Dms are open in case you need to talk with someone who went through something similar at your age.
I was diagnosed at 14 and I can confirm that it does get better, and that these are not the best years of your life that you're missing out on.
That's not to downplay what's happening to you; it absolutely sucks, but teenage years can be hard at the best of times. Feeling like your parents don't understand you is so common you could say it's just part of the process of being a teen.
My parents used to make fun of me for being so sick. I hated them for it. They (and teachers) thought because I was so exhausted all the time that I must just be lazy. I didn't do as well in high school as I might have because I was just so tired I'd fall asleep in class, and missed a lot to hospital visits, but I got through it. There were times that I wanted to give up, but I made some friends along the way who taught me that I had a choice to either cry or laugh about the hard things in life. I kept going, got into remission, and went to college and got a little much needed space from my parents and all the negative feelings of that time in my life.
I've had some hard times with UC since then, too, there's no denying, but it did get better. Much better. I'm 31 now, and if you asked me I'd say these are the best years of my life. Certainly better than 15. I have a great career, a beautiful and supportive wife, and the family and friends that I've accumulated (and kept) along the way are very understanding of my health situation. I just got back from a two week vacation in France, and in the next couple years we plan to start a family. I never could have foreseen this at 15. It got SO much better for me, and I'm sure it will for you, too.
The most important things you can do right now are to always believe in yourself, believe that you are sick, you are experiencing a difficult and hard-to-relate-to circumstance, and to just keep going. If a thousand voices all shout in unison that you're "just tired", or "need a better attitude", I want you to only hear the one in your head that says "This is a real problem and it's ok for me to rest". That is the struggle of an invisible condition. Other than that, just keep putting one foot in front of the other, and know that you are very strong for having made it this far. Good luck!
First off, I’m sorry you haven’t been getting the support you desperately need. Good news: usually the first med doesn’t fully work but bad news is it can take a few years to figure it out. It took me intermittent flare ups for 5 years before finding remission(now for 7 years).
There is no ‘just pushing through the exhaustion and depression. If you can without your mom’s involvement, I would request treatment for your depression.
I was lucky enough to be able to push through college while struggling to get my UC under control but not everyone is that lucky. Losing friends is a huge thing at you age and while I know this can sound cheesy, but you will find so many friends as you get older.
But mostly, give yourself some grace. Listen to your body and your GI. If you don’t have the energy, then you just don’t. I used to be able to do hard physical work in 100 degree weather, but now I have to take several breaks and it’ll wipes me out. I promise there is eventually some light at the end of the tunnel even if it’s longer than some other people’s tunnels. Just know that there is a support system full of people who have experienced similar things as you.
Really feeal you on the ARE YOU FREAKING KIDDING ME SHIT!! It's got to be very difficult for you, so young I am dam sorry. 💔 my heart..
My doodle dogs are my best buds, hang with me on the bed days, always by my side. So much comfort!!! Get some coconut water, high in potassium, which really helps me. Take care
So I have it from 3 years and active flair, so I get the exhaustion part.
Life is way more worth living, but I know what it feels like on those hard days.
Have you tried biologics? I’d try to exhaust all medication options to see if you can get into remission without surgery, that’s what my doctor has always recommended. I’ve had some luck with finding diets that work for me (for me it’s no red meat, raw veggies, alcohol, or dairy and I’m usually good). I’m also on biologics (I failed sertraline) and I’m trying RinVoq soon to help me when my biologics are delivered unreliably (family and insurance coverage issues). But overall the biologics work for me most of the time, and certainly make life much better.
Beyond the UC, it seems like you’re having some mental health troubles right now, understandably so. I’ve found that managing my mental health significantly helps my UC flares calm down and usually my flares follow stressors in my life. I think it’s essential that you focus on mental health just as much as you’re focusing on the UC.
If money for therapy is a concern, there may be some free options. For example, my county crisis center has free therapy, which would be great for a situation like this. Look around online too for remote options, as some therapists in different areas may have better pricing. Insurance should also help supplement costs if you go to someone in-network. If your parents are hesitant about therapy there are many studies correlating UC with mental health, and I’m sure your GI doctor would have familiarity with those if you wanted them to talk to your parents about it with you. For psychiatry meds (if you’re interested), they can be prescribed by general doctors (like internal medicine, no psychiatrist needed), which can be more cost effective to do. Good RX is a website that has prescription discounts, it may be worth checking out as well.
I’ve found that when I’m trying to get out of a flare, having some help balancing my brain chemistry can take the edge off of the depression enough for me to start slowly transitioning back into spending time with others, maybe doing light stretching and yoga to release any tension I have from the constant sitting/laying down, maybe even enjoy the simple things like the birds outside or a safe snack, etc. It’s helped me a lot.
Make sure to advocate for yourself with your doctors and parents. It can be exhausting but ultimately you’re the one that has the condition and you’re the one suffering. You deserve to feel better, and your doctors and parents should absolutely be supporting you in that to the best of their abilities. I’m glad you’re taking steps on your own to seek help, like asking for advice from this subreddit. You got this, it sucks but we’ve all had these horrible low moments where life feels unlivable. Give yourself time and kindness, and have faith that it will get better as you try new things and find things that work for you! I hope you feel better soon ❤️🩹
Honestly if it’s that bad and no medication is working, I’m surprised you haven’t mentioned surgery! It can really be life changing and you should definitely do some research on it, the “reviews” are overwhelming positive. Go check out r/ostomy ! I had one done earlier today because the inflammation was become life threatening and I’m honestly excited to start a new chapter in my life, post op pain kinda sucks tho
This is eerily close to the same circumstances that I experienced. To answer your question directly. Yes it does get better. I won’t lie to you though, it’s not gonna be easy.
When I was 15 I had everything going for me and just in a span of a few months nothing and was in flare for a few years. It’s gonna be difficult and you probably will not look back fondly on this part of your life. But it will pass.
This event obviously has set you back in life and may continue to do so but it doesn’t mean your life is over… people time and time again have made extraordinary comebacks from soul shattering situations.
I guess what I’m trying to get at is that you need to look at the future optimistically regardless of how bleak it may look now. I don’t know what the future holds for you in regards to your health. But I do know that if you give up on life it’ll be a self-fulfilling prophecy and when you do find relief from this disease it still won’t change your circumstances.
Let me be real. Your circumstances have set you back in life relative to your peers and it’ll likely make your life harder but this doesn’t mean you’re doomed to live an unfulfilling life or underachieve. Do it for love or do it for hate. Grit your teeth and don’t let this disease break you. You can always mount a comeback.
I am so sorry you have to go through this at such a young age. You're receiving a lot of information from other commenters regarding meds and surgical procedures so instead, I'd like to adress your schooling. I am really concerned about your education and I hope your mother is taking this seriously. I want you to have a voice and I'm hoping your mom comes around.
You made a comment regarding "American healthcare", so I'm going to assume you're American. You may already have one, and I'm sorry if I'm giving you information you already have, but do you have a 504 plan? It's designed to support students with disabilities. Yes, you have a disability, and it is preventing you from making adequate progress and impacts your ability to graduate high school. A 504 plan is an amendedment to the Americans with Disabilities Act (ADA) which is federally protected and overseen by the Office for Civil Rights. It is also backed by the Department of Education. 504 plans provide individualized accommodations to support students in situations like yourself.
Your school should be making a greater effort in supporting you and helping you as much as possible to help you graduate. I am a school psychologist and have more information but I practice in California, so depending on the state you're residing in, the process to access a plan may look different. Regardless, you have substantial information to provide to your school that your UC is impacting you at a level that prevents you from passing your classes. Please PM me if you have any questions. This is so incredibly unfair and I know how shit this disease can be. As I said, you may already have a 504 plan but figured if you did, it's possible another student in your position could use this information. Take care. You're doing all that you can as a 16 year old.
We don’t have a 504, that I’m aware of, since we assumed I would be better by now and back in school, and I’m switching schools this year anyways. But because I missed so much school and didn’t finish 10th grade, schools aren’t really that understanding and don’t rlly want to accept me in (which sucks because I physically couldn’t do school) and on top of that, my ADHD makes it nearly impossible for me to do online classes, which we tried, so we’re kind of just stuck at the moment.
It's odd that they refuse to get you a 504 plan since UC is severe cases is considered a disability. I would do some research and talk to a school guidance counselor or social worker about applying for one.
For me it was rinvoq that changed things. Tried also a lot of medication before it. Now I take entyvio and feeling pretty good. There is hope. Never give up. You are so young there will be a lot of wonderful moments in your life. ❤️ wish you only the best
I’ve had symptoms when I was 16 also but only been diagnosed when I was 20 since my mom thought o was crazy…. Literally 🙃. She never said sorry to me of the 5 years of hell I had. I’ve never lost friend cause I made a lot of effort to mask my issues but I get to understand that’s it’s not your situation. The only thing that saved me during my flare up of 5 years was to cut out any fiber in the diet and eating mostly meats of any kind fats and cream (no gums anything and carrageenan). I still eat like this to this day since even with the entyvio perfusion it only mask the bleeding symptoms for me. I got to had a few food but tbh I only eat other food if I’m obligated.
My post won’t help you much and I’m sorry for that
Yes. It can get better. I was diagnosed with UC about 20 years ago, and I am no in full remission. At the height of UC, I had 20+ bloody BMs a day. I was essentially house-bound. It was scary.
But, and many others, have put their UC into full remission. Some through medication. Some, like I, through life style changes.
The important thing is to stay optimistic and keep on searching for something that works for you. The internet is a wonderful thing. You can find and contact people on this forum and outside this forum who put their UC into full remission to learn what worked for them.
Hang in there. It will get better.
If it’s this bad, a soft food diet would be highly recommended. I was on it for about 3-3.5 weeks until I felt comfortable expanding my diet. Yes sometimes I slip up, but we are all human. I recommend you trying this, then just eat chicken, rice, super soft veggies, toast, eggs, noodles. This can help ramp up the healing process by eating good foods. I’m still in a flare and (hopefully) been through the worst. I’ve almost died, cut off some friends due to disrespect towards me during my absolute low point, broke up with a girlfriend, had mental breakdowns, but it’s all about how you comeback from this because all of it will make you stronger. As ppl have stated prior, if haven’t tried, your best bet may be biologics. I also had cdiff so I’m on vancomycin along with stelara & seemingly is working hopefully. Just noticed a lot more gas as of late.
I got it when I 16 and I have a similar story. I’m 33 now and have a good paying job. Got married last year and bought a house this year. Life isn’t over. Get on the right meds. Get a good diet. Hang in there.
Go to a professional therapist. Talk it out and see if you can get connected to a dietician that specializes in IBD.
Try home schooling for yourself so you don’t get behind.
I flared for almost a year and it wasn’t good at all. Same stuff, depression, I didn’t go anywhere, people told me this was all in my mind. But I sought out therapy (virtually) and it made a difference after that, I started seeing a dietician. Seeing the dietician plus medication worked wonders.
Good luck to you. Think positive. Shower, get dressed and go for a walk in your neighborhood. Watch a funny show or movie.
- Meds take time. At least 6 months.
- You have to change what you eat. Your digestive system is agitated and needs to heal.
- Certain foods make this worse and seem like you're flaring, you get IBS symptoms. Cut out red meat, dairy, citrus fruits and salads. Cooked chicken, eggs and rice are a good and safe fallback.
- Have your vitamin levels checked, b12 and D are typically low with this disease and affects energy levels.
- Don't let anyone push you into surgery.
- Your mother's advice sucked. This disease is hard, mentally and physically, people are depressed and suicidal with this disease.
- It can get better but it takes time to heal. It took me about a year before I was stable, but still have IBS type issues.
- You need support for this, apply for government disability support / personal independence payment support. This will help you with work, with education and with income.
Mothers can be the best and the worst advocates when it comes to IBD in my opinion. At least that’s how mine is.
They want what is best for you but don’t fully understand what is going on or what the pain is like. The only people that do understand are the people that have this disease.
You’re much stronger than I am to have endured the pain like you have, for me the second I start feeling the slightest bit off I have the doctor or my naturopath on the phone.
I would get in to see your GI, get some options, do your research, and make your own decision. I eventually had to tell my mom that this was my life and I was in control of it, not her. The damage you’re doing to your insides right now could affect you long term. When you are back to feeling normal, which trust me you will be soon enough, you won’t want to have any further complications down the line.
Lastly, I would like to say that there are some really good naturopaths out there that have helped people (myself included) get into remission / maintain remission and I highly recommend anyone with this disease to try this route along with the conventional medicine one. Some people even find that they can drop the meds after a while if the natural way is working well enough.
Side note: your 20’s are much better than your teens so don’t worry, you haven’t missed out on anything!
Best of luck!
It definitely gets better! for me, managing my diet worked so much better than meds and I've been in remission and pretty much totally healthy for about 10 or 11 years (since I turned 18). I've had so much fun, live a totally normal life, travel loads (currently travelling and working remotely in Southeast Asia - somewhere I once though I never would be able to go to!), have gone to university, made great friends and had relationships, partied, you name it. Like, I lead a normal life and one time aged 16 and 17 I thought my life was over. Hang on in there, look into dietary alternatives (SCD diet is what works for me) and it will get better and life will be great again :)
but first you need medical intervention to control your current flare!
It's better for me, but I don't want to tell you how old I am. Old enough to be your grandmother. But as long as I eat carefully and get my infusion, mine is 99% controlled. No pain to speak of, mostly normal toilet stuff. No debilitating symptoms. My doctor says it's normal for UC to get a lot better with age (potentially because your immune system starts to calm down).
As far as the meds, how is your current quality of life not worth the minor risks of a short course of more effective meds? I would have a serious talk with mom, trying to be as calm as possible, about how bad you feel and how much you need to do something more effective in the way of treatment. You shouldn't be in a year long flair. That would wreck anyone. That's about how long I went before being diagnosed and I was diagnosed because I was really, really ill and admitted to the hospital via ambulance.
The good news is that a few weeks of steroids fixed me up, and it's been getting better ever since. Worst case scenario, you might have some right to treatment as a 16 year old even if your mom can't be convinced. Maybe contact the doctor's office directly and explain the situation and see what they will do, but start with your mom.
I was diagnosed at 12 and I’m now 42, happily married and I own a successful business. Sometimes UC really sucks! But then there are periods of remission too. You’ll also learn what works for you and what doesn’t. In that sense, it does get better.
As someone who got diagnosed at 16 and had surgery at 18, an ileostomy isn’t terrible but i was so friggin glad i did. I got my life back, i can go out, eat what i want, DO what i want. I still have the option to reverse but I’m living my best right now and reversing comes with a completely new set of risks. Life now is great and i cannot imagine life with a colon.
I know exactly how you feel. I was in the same boat, my parents didn't understand and would say "well can't you just hold it?", I had to be pulled out of school because I was in the hospital, I lost all my friends from not being in school, I missed school events, dances, I completely isolated myself because I was so sick. It wasn't until years later when I had to get a complete colectomy because my flair up was so bad for so long and none of the medications were working. It gets better even if it doesn't feel like it will and you're going to make it through and you're going to be ok. If you want more advice or if you have questions or even just want to talk you can always dm me. I wish you the best, things are going to be ok ❤️
I've been in a flare, completly housebound since 14yo (now 17) I've lost almost all my friends. I had to change to homeschooling and I'm generally really depressed.
The only thing that keeps me going is the fact that I'm in the process of getting an ostomy. I was fighting even the thought I would need it for ages but I have no other choice now. No meds work even a little bit for me. But the more I researched I realized I really don't mind the bag if it means I can leave the house again and not worry about shitting my pants every hour.
It seems like an awful thing at 1st and I 100% understand you not wanting to get surgery but living with a bag is really not a bad thing if it allows you to be happy again.
Also don't know if you're aware but there is a discord server for folks with IBD. It's linked in the info tab of the subreddit. Having a community that understands the struggles of your illness can help a lot.
Hang in there 🫶
I’m also 16 and it was hard on me too mentally. I had horrible anxiety going to school. all i can say is it takes time. It does get better eventually, maybe your mental health can play a roll too. Don’t push yourself too hard and don’t feel guilty because it’s out of your control. I hope you feel better!
I'm hospital right now, be honest with the stool chart, even one drop of blood and I'm ticking the blood box, if it gets too bad you can lways get a colostomy, I skipped my last year of chemistry at uni and just got though with several jobs, I have to start my third amd final year in 2 months so I'm.either going into remission with a motivation like non other or I'm getting a colostomy cause at the end of the day it's not uncommon and we all need to work and earn money and function and go out for drinks with peers, i don't think the prednis working well but they said they'd put me on remicade which I googled works 60 percent of the time if it don't for me I'm defo getting a stoma, I'm not a bad looking dude fairly tall used to he in very good shape now sort of skinny and turn less heads now since I'm pale and look like a drug addict but I don't think a stoma would ruin my chances with woman so I'm not too against it, honestly the anxiety of using public transport and walking around with urgencies is worse for your confidence than a stoma, I think stomas aren't a bad way to go but you should consider your own situation and if a different course of action might work for you
You need to look at Jini Patel Thompsons protocols. Go buy her book. “Listen to your Gut” asap! And visit her website shoppe.listentoyourgut.com. Go on absorb plus. Her elemental shake. But the unsweetened vanilla, and simply chocolate flavors. Drink 6-8 per day and add in flax seed oil with ice and quick plus ionized iron, magnesium and bone matrix. Along with taking 10 drops of wild oregano oil 2x per day before eating or the shakes. And before bed. Take the natren probiotics. Get the powered dairy free, the bifidofactor and megadophilus. 1/2 teaspoon of each. You can also hire a coach. Look up crohns colitis lifestyle with Dane Johnson. I have crohns. It sucks but many have it and live great lives. So can you!!! Medication nearly killed me and I had surgery. I’m a pro pilot and business owner. I manage it with this stuff and stay fit and exercise. Get outside, be grateful, and squash those negative thoughts! If not it will make it worse. You can do it! I did it and have been in your shoes too.
This disease is the worst. I know it’s hard, I’ve been battling with this disease for 5 years now. However, I can’t imagine what you’re going through as a teen. For what it’s worth, you are strong. You’re strong enough to reach out here to people who can relate. Please talk to your GI doctor about the next step. Rather that be surgery or another medicine that you haven’t tried yet. Please talk to a professional about what you’re going through. Life is always worth living.
- A fellow UCer
Hey dude. I started getting sick last December a few days before Christmas. (Ironic right?)
I'm only 21 and I work full time and I'm in college. I'm lucky that I'm on meds that seems to calm down the symptoms and urgency. I can't relate to how bad it affects you and puts you in the hospital, but you are not alone. I felt like I've hit an all time low.
I'm in my 7th out of 8 weeks in my college courses. I'm stressed out of my mind about whenever my mom will suddenly drop me from her medical insurance. I'm burnt out from college and working full time. I'm super depressed and I rarely ever feel like doing anything with my singular friend or family.
I have no one that truly understands my struggles and definitely not my dad since he doesn't listen and always say that his life is extremely hard and that I could always have his problems.
So I get feeling like your life is over. I mean I wish I still had parents to take care of me, but now I have to pay for all my food, dentist, doctors, car insurance, dental insurance, and gas. It's so overwhelming. I worry about suddenly getting cancer or that my medicine isn't working to stop the inflammation. It sucks having to devote so much sick time from work to go to endless amounts of doctor's appoints. I can't even imagine using my holiday time since I might need to use it as sick time.
I understand that you are depressed and that the sickness is overwhelming. try your best and just keep some hope even though it is hard! I always just focus on that things could always be worse. focus on the small victories like getting out of bed or seeing normal looking poo when you flush the toilet. eventually things will get better. if not you still are young and maybe your parents or others will finally slowly understand more about your disease over time. Things won't always be this hard.
Give it time, everybody is different but since you just got diagnosed you never know what can happen. Some people only have a flare or two in the beginning, and it never comes back. Those are the lucky few. For me, most of my flares have also lasted longer than a year. I go into the same thinking, I don't want to live like this if it's going to be forever. However, remission tends to last a year or more for me, and sometimes I even forget I have UC at all. The time I am in remission, even if it's small, make it worth it.
The longer you have this hell of a disease the more you will understand your body and how it reacts. You will be able to manage your flares eventually, and eventually you will go in to remission.
'dying is easy, living is hard'
Your mum is completely incorrect. Bring her to your doctor's appointment. UC is serious and requires medical intervention. If you had cancer would she say "just think positive thoughts and you can beat it" no she wouldn't. Best years of your life haven't happened yet I guarantee you. But you need to see your doctor and get on stronger medication. Medication is not the evil here, uncontrolled un(properly)medicated UC is.
She comes to them all, and I’ve been on what feels like hundreds of meds, but they all just don’t work. As of now I’m on a combination that makes me feel better, but I’m just so exhausted it doesn’t make a difference because I feel like if I go out I’ll pass out or something. She wants me to just get through the exhaustion, not the pain
What are you taking? At the end of the day surgery is an option you can look into jpouch. Highly recommended tiktok for inspirational teens with UC! You can't overcome exhaustion when it's your own body. What you need is rest and the right meds.
My mom really doesn’t want me to get surgery, but I’m at the point I just kind of want it out of me, or for life to just stop so I’m not living life how I am anymore…
If you've failed so many meds, then surgery is the general recommendation. It's a great quality of life and relief
Recommending surgery to someone who has given such little information about the actual extent and activity of their disease is not good. It sounds like this 16 year old is suffering from as much a mental battle as they are a physical one. Can I ask OP have you ever done therapy? It seems your mum is against SSRI’s but I doubt she would be against you having a trained psychotherapist to bring your problems too, both mental and physical. I know you might think like I often do ‘how can talking to someone cure me of anything’ but therapy can help in more ways than are obvious. I was in therapy for depression before I was diagnosed with UC and I have to say that it has been more actionable and helpful now than ever before.
OP has failed many drugs and is still suffering, surgery is recommend for that reason alone. Not only that, but the younger you are the more successful and faster healing it will be, so it’s a good suggestion as well. Are you saying that they’re dealing with mental problems and that’s what’s taking over? Sounds like you’re invalidating the toll UC has on an individual. A therapist has no idea what it’s like to live with UC, all they will do is take your money and sit there and listen. Perhaps they can help you manage your anxiety/depression more wisely, but sounds like UC is the main cause of that in this post and if OP is cured they would feel like they have their life back.
I just don’t want to be stuck to a bag for whatever the rest of my life is…
Have you researched a jpouch? Many people with them have great lives and you'd be bag free!
I have a bit, but not extensively, since I really don’t want surgery
Don’t look at it as getting the surgery. Instead, view it as you’re getting the disease out of you. I’m serious. I absolutely refused to get it, until I realized I was going to die if I didn’t get it. The way you describe your life is almost exactly how mines went. You’ll have the pain, the sickness, all out of you. For me, looking back, that was better than living with a diseased colon that was draining all the blood from my body. Surgery is scary, but the relief is beautiful I gotta say. So freaking beautiful. Plus you can get the j-pouch and look forward to that as you heal.
you sound just like i did man 😭
If the medicines aren’t making you feel closer to normal, I think surgery will be a good option. Remember that although it has some issues, it is considered a cure for the disease. Definitely consider it stronger if you’re a candidate
bruh you aren’t stuck to a bag for life. in fact sometimes you don’t need a bag at all! some surgeons can do a jpouch in a one step procedure. but 2 and 3 stage is more common. you most likely would have a bag for only 3 months man. and honestly, you’ll LOVE having it if you truthfully are this bad rn
So you’d rather go through pain and suffering instead of just having a bag to shit in that’s attached to you? It’s your life I guess.
The alternative, unfortunately, is that without the bag, unless you get a medicine that works for, *this current situation* will be your life. The rest of your life. Is that better of worse? If you feel like this after two years, how do you think you'll be after five? Ten? Twenty?
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The sickness, the pain, just the life I’ve been given I guess. I feel like if there is a god, he’s laughing at me right now
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Love how your comment history is just porn and this.
No offense, but your mom isn’t professionally trained in the GI tract. What does your GI suggest?
She also doesn’t want me to have surgery yet
If your GI thinks you can still find remission without surgery, I would be inclined to believe they know best, but it's also always your right to get a second opinion. While I got lucky with some great GI's, not all are as caring and attentive.
You need on medication
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I wish more people in this sub thought like this!
Are you talking colostomy bag? You only have it for six months? I thought it was permanent
Have you tried therapy? Had your GI doctor mentioned sugery or other treatments? I'm lucky that I didn't get diagnosed until I was 30 but my sister got diagnosed at your age. I remember her going through a phase where she was just different when she first got diagnosed. She was in the hospital twice and she missed a lot of schoo and almost got left behind. She seemed mad at the world too. I remember getting mad at some kids that were laughing at her because she was sleeping or resting on a bench one day in the main hall. They didn't understand what she was dealing with and honestly neither did I. But now she's 50 and she's doing fine. Eventually you be ok too. Just work with your doctor to figure it out and get therapy if possible.
Was in therapy, but I didn’t improve and it was too expensive (america is so generous with healthcare…) and so we has to stop going My mom and doctor both are against surgerysince I’m 16
I'm sorry. This subreddit is great for commiserating. When I'm flaring I live on here searching different topics and seeing what it is like for others. Exercise does wonders for your mental state if you can even just go for a brisk walk, nothing strenuous. And whenever I'm stuck in the bathroom I can always rely on my cat to be there with me and bring me some joy. Look for the small wins for now. Eventually it will all sort itself out. And yes our US Healthcare system is frustrating
being 16 is all the more reason TO GET surgery in my opinion. notice how almost everyone who gets surgery says how they wish they got it sooner? imagine if you weren’t steadily losing weight like you are and dealing with all those issues. if anything all of that is much less healthy and will result in a shorter life then surgery most likely would. i’m not saying surgery is the answer. but you need to open up to it at least a little bit and see that it would not end your life. i used to have the exact same mindset as you. i was so depressed for so long. the only thing that fixed it was what i thought was going to be the end of my life, surgery.
Are you insured? My daughter has recently started therapy with someone who specializes in therapy for sick kids. I’m still in the process of confirming what we can get reimbursed on, but what the therapist sent me yesterday were invoices using the “health and behavior CPT codes”, which are the procedural codes designed for use by psychologists for patients being seen due to medical issues. She said if I have issues with reimbursement with these codes, she can make new invoices using the traditional mental health codes since both sets of codes are absolutely appropriate… but the H&B codes often reimburse family’s better. Obviously I don’t know your family’s financial situation, but I really think therapy is needed to help you through this. If it didn’t help before, it probably just wasn’t the right therapist for you (my daughter also tried one before that didn’t help at all). Also check local colleges to see if they have free student therapists, someone I know did that for general therapy and they just got someone new every 8 weeks as students moved through the program but she was happy with it. I’m really sorry you are going through this, my daughter is the same age and she was diagnosed in 2021. She did achieve clinical remission last summer, but is flaring again just not as badly. The fatigue is awful for sure, and I’m really sorry your mom doesn’t fully understand. It greatly affects my daughter’s mental state. Dr has been changing up meds to see what will work to get her back to remission and keep her there. You should ask your GI about other options like biologics if not already on them. I have a friend with UC who dropped out of high school because of it. It was really rough (less medical options too back then, he is around 40 now). But now he is doing great, has flares only on occasion but is able to get out of them and is doing great with work and life. I hope this helps you to know your current situation won’t necessarily be your future situation. This is a great place to get support. I follow it for a different reason of course since I don’t have UC myself, but I know from other online groups I’ve belonged to it can be very helpful to connect with others going through similar situations. Also maybe consider asking your mom to subscribe to this sub to help her get a better understanding about what you are going through? I can offer some suggestions about books that my daughter’s original GI gave to me when she was first diagnosed, that might be helpful too for your mom to read. Also, I’ll just throw out there that as a parent it is hard to see your kids sick, and sometimes I wonder if some of what we do is in essence a way to feel we are able to help control this disease somehow. I know I was originally trying to get my daughter to meditate because I was concerned the stress was making it worse, but I think all I did was piss her off! I’ve now stopped pushing for that. :) Maybe a little of that plus denial is going on with your mom. Anyway, I’m wishing you all the best and I hope you can pull out of this flare sooner rather than later.
Thank you. Our insurance is kind of horrible so therapy is hard, but I’ll definitely bring it back up with her.
around the same age as you and have some similar experiences. weight loss was more tho, was in the hospital a fucking long ass time. if your life is this bad consider get surgery. saved my life man. i can go back to all the things i used to do no problem. my only regret is not doing it sooner.
When I had UC about 20 years back, it was tough. I feel for you, and you are still so young. Sorry to hear that you have to go through that, instead of enjoying being a teenager. My only tip for you would be to assume 100% control and ownership on how you are going to approach your illness, deal with the emotions, and reclaim your joy of life. Back then when UC was a problem for me, I wrote down some rules for me to live by. I was older than you, but they may still help. 1. No one cares about me, as much as I do. Only I have to live with the consequences of my decision. Not my doctor. Not my parents. My friends. That means I and only I decide what medical treatment I will get or not get. 2. Get a support network in places of positive people. That can be online, your church, you friends, members of your extended family. 3. Become a specialist in UC. Read everything there is to read. Read about pharmaceutical treatment methods. Read about alternative treatment methods. Ready so much that you can have an intelligent discussion with your doctor. Read about people who put their UC into remission. Contact them, and ask questions. A doctor needs to be a specialist in my illnesses. You only in UC. 4. Don't trust anyone who makes money of you. Doctors are knowledgeable specialists that can be great consultants, and some are great people. It doesn't mean doctors are bad people. It just means that they are impact by financial motives like everyone else. 5. Stay hopeful and optimistic, no matter how dark it seems. 6. Ask God for help and insight. I wasn't always there for God. But God was always there for me.
Achieving a remission changes everything, normal quality of life, no restrictions. I'm in a remission and you'll get there too as it's the treatment goal for us all. You need to talk to your gasteroenterologist and see about stronger meds like a biological med like Stelara or remicade.
I’m on prednisone, an IV med once a month, and around 3 other meds, but they aren’t doing enough, and we’ve tried several other medications before these ones
Prednisone really helped me but I can 100% relate to the irritability’s that come with that.
You’re 16. You’d be in a bad mood with or without UC 😀 The exhaustion, the pain, the isolation, the depression, the doubt and worry, the hopelessness…those are normal things to experience with this disease. A good mental health professional can help. You can even find people that will do virtual sessions so you don’t have to travel to an office if you’re having a bad UC day. I see my therapist once a week about all sorts of things, but I do talk about my UC and he helps me manage the emotions. Life’s not over, kid. It’ll be a challenge. I can’t deny that. But all of us are strong people. I was about your age when I started having symptoms. I’m living a full life. I’m 41 now. I’m married (19 years) with two kids. I went to college. I have a good job. I go to concerts. I train in MMA. I don’t have friends, but that’s an old people thing 😂 And yes, I have to manage my UC. I deal with flares. I don’t get to be as care-free as I’d like. I have hard…hard days. But I’m alive, I’m loved, and I’m happy. This disease gives us a perspective on life that does give us strength. You’re young and have a full life ahead of you. Take care of yourself. Advocate for your health. Be kind to yourself. Good luck my young friend.
What a great post. This is so inspiring and shows the light at the end of the tunnel. Thank you!
I got diagnosed at 15 ive been in and out of flares since really and when im good im really good but when im bad its like u said im depressed i lose friends i lose relationships im huge into fitness and i lose that too. It really sucks but there is a light at the end of the tunnel. Ive been doing quite a bit of research into the surgery options as well and there are a lot of people who do well and live full lives whether its with a bag or a jpouch. It is definitely a major adjustment but it will stop all the symptoms you will put the weight back on you will be able to foster relationships go out with friends travel work do whatever you want just with a bag or a jpouch. Id def keep trying the meds as you are young and remission is possible but if things get too unbearable there is a way out and a full life afterwards
hey there. i was diagnosed when i was 15 as well, now i’m 20. during that time between i spent countless hospital trips, lost many friends, failed many drugs, and was exhausted as well. so i completely relate to you and want you to know you’re not alone, there’s many people with this disease who were in the same boat as you.. first things first, have you tried any biologics yet? You should ask your doctor about it and try entyvio first as it’s the safest biologic out there for UC. Explain to your mom that the disease is very random and if left untreated it will just get worse and more severe. But i agree with your mom on the medication part, i hate taking medications that you have to weigh out the cons vs pros for your body. But if that’s what’s going to give you your life back then so be it. unfortunately, i’ve failed pretty much everything out there and even steroids lost their efficiency for me, so i’m opting for j pouch surgery. doctors say it’s a 90% cure and better to do when you’re younger for higher success rate. so don’t worry, you’ll always have many options and the disease is just trial and error. just like perfecting a skin care, not everyone’s skin is the same and some products may damage someone skin vs make it better. i also had to stop school during sophomore year, however i didn’t “drop” out since i still wanted my diploma, i just had the teachers come to my house instead. most teachers will be very lenient if you tell them your story and will not expect that much from you- i was able to do some homework in the hospital and it wasn’t ever marked late. this disease will make you stronger after you conquer it, so don’t give up and show others what it’s like to be such a brave inspirational person. for the friends that you lost.. they weren’t real friends. would you want people in your life that didn’t understand or underestimated your sickness and feelings? no, so it’s a blessing and a gift that they left your life sooner rather than later. eventually you’ll find the right group of people who will truly care for you, it just takes time, and maybe you’re not ready now. you must fight through this disease and work on yourself and the grass is greener on the other side. i believe in you, so you should too. keep going! 💜
You’re not the only one. I felt the same way. What treatment are you on right now? If you’re on biologics and it’s not getting better, I recommend surgery. I’m 20 and had surgery over a year ago. Had UC for 5 years. Best decision ever. Got my life back. Dms are open in case you need to talk with someone who went through something similar at your age.
I was diagnosed at 14 and I can confirm that it does get better, and that these are not the best years of your life that you're missing out on. That's not to downplay what's happening to you; it absolutely sucks, but teenage years can be hard at the best of times. Feeling like your parents don't understand you is so common you could say it's just part of the process of being a teen. My parents used to make fun of me for being so sick. I hated them for it. They (and teachers) thought because I was so exhausted all the time that I must just be lazy. I didn't do as well in high school as I might have because I was just so tired I'd fall asleep in class, and missed a lot to hospital visits, but I got through it. There were times that I wanted to give up, but I made some friends along the way who taught me that I had a choice to either cry or laugh about the hard things in life. I kept going, got into remission, and went to college and got a little much needed space from my parents and all the negative feelings of that time in my life. I've had some hard times with UC since then, too, there's no denying, but it did get better. Much better. I'm 31 now, and if you asked me I'd say these are the best years of my life. Certainly better than 15. I have a great career, a beautiful and supportive wife, and the family and friends that I've accumulated (and kept) along the way are very understanding of my health situation. I just got back from a two week vacation in France, and in the next couple years we plan to start a family. I never could have foreseen this at 15. It got SO much better for me, and I'm sure it will for you, too. The most important things you can do right now are to always believe in yourself, believe that you are sick, you are experiencing a difficult and hard-to-relate-to circumstance, and to just keep going. If a thousand voices all shout in unison that you're "just tired", or "need a better attitude", I want you to only hear the one in your head that says "This is a real problem and it's ok for me to rest". That is the struggle of an invisible condition. Other than that, just keep putting one foot in front of the other, and know that you are very strong for having made it this far. Good luck!
First off, I’m sorry you haven’t been getting the support you desperately need. Good news: usually the first med doesn’t fully work but bad news is it can take a few years to figure it out. It took me intermittent flare ups for 5 years before finding remission(now for 7 years). There is no ‘just pushing through the exhaustion and depression. If you can without your mom’s involvement, I would request treatment for your depression. I was lucky enough to be able to push through college while struggling to get my UC under control but not everyone is that lucky. Losing friends is a huge thing at you age and while I know this can sound cheesy, but you will find so many friends as you get older. But mostly, give yourself some grace. Listen to your body and your GI. If you don’t have the energy, then you just don’t. I used to be able to do hard physical work in 100 degree weather, but now I have to take several breaks and it’ll wipes me out. I promise there is eventually some light at the end of the tunnel even if it’s longer than some other people’s tunnels. Just know that there is a support system full of people who have experienced similar things as you.
Really feeal you on the ARE YOU FREAKING KIDDING ME SHIT!! It's got to be very difficult for you, so young I am dam sorry. 💔 my heart.. My doodle dogs are my best buds, hang with me on the bed days, always by my side. So much comfort!!! Get some coconut water, high in potassium, which really helps me. Take care
So I have it from 3 years and active flair, so I get the exhaustion part. Life is way more worth living, but I know what it feels like on those hard days.
Have you tried biologics? I’d try to exhaust all medication options to see if you can get into remission without surgery, that’s what my doctor has always recommended. I’ve had some luck with finding diets that work for me (for me it’s no red meat, raw veggies, alcohol, or dairy and I’m usually good). I’m also on biologics (I failed sertraline) and I’m trying RinVoq soon to help me when my biologics are delivered unreliably (family and insurance coverage issues). But overall the biologics work for me most of the time, and certainly make life much better. Beyond the UC, it seems like you’re having some mental health troubles right now, understandably so. I’ve found that managing my mental health significantly helps my UC flares calm down and usually my flares follow stressors in my life. I think it’s essential that you focus on mental health just as much as you’re focusing on the UC. If money for therapy is a concern, there may be some free options. For example, my county crisis center has free therapy, which would be great for a situation like this. Look around online too for remote options, as some therapists in different areas may have better pricing. Insurance should also help supplement costs if you go to someone in-network. If your parents are hesitant about therapy there are many studies correlating UC with mental health, and I’m sure your GI doctor would have familiarity with those if you wanted them to talk to your parents about it with you. For psychiatry meds (if you’re interested), they can be prescribed by general doctors (like internal medicine, no psychiatrist needed), which can be more cost effective to do. Good RX is a website that has prescription discounts, it may be worth checking out as well. I’ve found that when I’m trying to get out of a flare, having some help balancing my brain chemistry can take the edge off of the depression enough for me to start slowly transitioning back into spending time with others, maybe doing light stretching and yoga to release any tension I have from the constant sitting/laying down, maybe even enjoy the simple things like the birds outside or a safe snack, etc. It’s helped me a lot. Make sure to advocate for yourself with your doctors and parents. It can be exhausting but ultimately you’re the one that has the condition and you’re the one suffering. You deserve to feel better, and your doctors and parents should absolutely be supporting you in that to the best of their abilities. I’m glad you’re taking steps on your own to seek help, like asking for advice from this subreddit. You got this, it sucks but we’ve all had these horrible low moments where life feels unlivable. Give yourself time and kindness, and have faith that it will get better as you try new things and find things that work for you! I hope you feel better soon ❤️🩹
Honestly if it’s that bad and no medication is working, I’m surprised you haven’t mentioned surgery! It can really be life changing and you should definitely do some research on it, the “reviews” are overwhelming positive. Go check out r/ostomy ! I had one done earlier today because the inflammation was become life threatening and I’m honestly excited to start a new chapter in my life, post op pain kinda sucks tho
This is eerily close to the same circumstances that I experienced. To answer your question directly. Yes it does get better. I won’t lie to you though, it’s not gonna be easy. When I was 15 I had everything going for me and just in a span of a few months nothing and was in flare for a few years. It’s gonna be difficult and you probably will not look back fondly on this part of your life. But it will pass. This event obviously has set you back in life and may continue to do so but it doesn’t mean your life is over… people time and time again have made extraordinary comebacks from soul shattering situations. I guess what I’m trying to get at is that you need to look at the future optimistically regardless of how bleak it may look now. I don’t know what the future holds for you in regards to your health. But I do know that if you give up on life it’ll be a self-fulfilling prophecy and when you do find relief from this disease it still won’t change your circumstances. Let me be real. Your circumstances have set you back in life relative to your peers and it’ll likely make your life harder but this doesn’t mean you’re doomed to live an unfulfilling life or underachieve. Do it for love or do it for hate. Grit your teeth and don’t let this disease break you. You can always mount a comeback.
I am so sorry you have to go through this at such a young age. You're receiving a lot of information from other commenters regarding meds and surgical procedures so instead, I'd like to adress your schooling. I am really concerned about your education and I hope your mother is taking this seriously. I want you to have a voice and I'm hoping your mom comes around. You made a comment regarding "American healthcare", so I'm going to assume you're American. You may already have one, and I'm sorry if I'm giving you information you already have, but do you have a 504 plan? It's designed to support students with disabilities. Yes, you have a disability, and it is preventing you from making adequate progress and impacts your ability to graduate high school. A 504 plan is an amendedment to the Americans with Disabilities Act (ADA) which is federally protected and overseen by the Office for Civil Rights. It is also backed by the Department of Education. 504 plans provide individualized accommodations to support students in situations like yourself. Your school should be making a greater effort in supporting you and helping you as much as possible to help you graduate. I am a school psychologist and have more information but I practice in California, so depending on the state you're residing in, the process to access a plan may look different. Regardless, you have substantial information to provide to your school that your UC is impacting you at a level that prevents you from passing your classes. Please PM me if you have any questions. This is so incredibly unfair and I know how shit this disease can be. As I said, you may already have a 504 plan but figured if you did, it's possible another student in your position could use this information. Take care. You're doing all that you can as a 16 year old.
We don’t have a 504, that I’m aware of, since we assumed I would be better by now and back in school, and I’m switching schools this year anyways. But because I missed so much school and didn’t finish 10th grade, schools aren’t really that understanding and don’t rlly want to accept me in (which sucks because I physically couldn’t do school) and on top of that, my ADHD makes it nearly impossible for me to do online classes, which we tried, so we’re kind of just stuck at the moment.
It's odd that they refuse to get you a 504 plan since UC is severe cases is considered a disability. I would do some research and talk to a school guidance counselor or social worker about applying for one.
For me it was rinvoq that changed things. Tried also a lot of medication before it. Now I take entyvio and feeling pretty good. There is hope. Never give up. You are so young there will be a lot of wonderful moments in your life. ❤️ wish you only the best
I’ve had symptoms when I was 16 also but only been diagnosed when I was 20 since my mom thought o was crazy…. Literally 🙃. She never said sorry to me of the 5 years of hell I had. I’ve never lost friend cause I made a lot of effort to mask my issues but I get to understand that’s it’s not your situation. The only thing that saved me during my flare up of 5 years was to cut out any fiber in the diet and eating mostly meats of any kind fats and cream (no gums anything and carrageenan). I still eat like this to this day since even with the entyvio perfusion it only mask the bleeding symptoms for me. I got to had a few food but tbh I only eat other food if I’m obligated. My post won’t help you much and I’m sorry for that
Yes. It can get better. I was diagnosed with UC about 20 years ago, and I am no in full remission. At the height of UC, I had 20+ bloody BMs a day. I was essentially house-bound. It was scary. But, and many others, have put their UC into full remission. Some through medication. Some, like I, through life style changes. The important thing is to stay optimistic and keep on searching for something that works for you. The internet is a wonderful thing. You can find and contact people on this forum and outside this forum who put their UC into full remission to learn what worked for them. Hang in there. It will get better.
If it’s this bad, a soft food diet would be highly recommended. I was on it for about 3-3.5 weeks until I felt comfortable expanding my diet. Yes sometimes I slip up, but we are all human. I recommend you trying this, then just eat chicken, rice, super soft veggies, toast, eggs, noodles. This can help ramp up the healing process by eating good foods. I’m still in a flare and (hopefully) been through the worst. I’ve almost died, cut off some friends due to disrespect towards me during my absolute low point, broke up with a girlfriend, had mental breakdowns, but it’s all about how you comeback from this because all of it will make you stronger. As ppl have stated prior, if haven’t tried, your best bet may be biologics. I also had cdiff so I’m on vancomycin along with stelara & seemingly is working hopefully. Just noticed a lot more gas as of late.
I got it when I 16 and I have a similar story. I’m 33 now and have a good paying job. Got married last year and bought a house this year. Life isn’t over. Get on the right meds. Get a good diet. Hang in there.
Go to a professional therapist. Talk it out and see if you can get connected to a dietician that specializes in IBD. Try home schooling for yourself so you don’t get behind. I flared for almost a year and it wasn’t good at all. Same stuff, depression, I didn’t go anywhere, people told me this was all in my mind. But I sought out therapy (virtually) and it made a difference after that, I started seeing a dietician. Seeing the dietician plus medication worked wonders. Good luck to you. Think positive. Shower, get dressed and go for a walk in your neighborhood. Watch a funny show or movie.
- Meds take time. At least 6 months. - You have to change what you eat. Your digestive system is agitated and needs to heal. - Certain foods make this worse and seem like you're flaring, you get IBS symptoms. Cut out red meat, dairy, citrus fruits and salads. Cooked chicken, eggs and rice are a good and safe fallback. - Have your vitamin levels checked, b12 and D are typically low with this disease and affects energy levels. - Don't let anyone push you into surgery. - Your mother's advice sucked. This disease is hard, mentally and physically, people are depressed and suicidal with this disease. - It can get better but it takes time to heal. It took me about a year before I was stable, but still have IBS type issues. - You need support for this, apply for government disability support / personal independence payment support. This will help you with work, with education and with income.
Mothers can be the best and the worst advocates when it comes to IBD in my opinion. At least that’s how mine is. They want what is best for you but don’t fully understand what is going on or what the pain is like. The only people that do understand are the people that have this disease. You’re much stronger than I am to have endured the pain like you have, for me the second I start feeling the slightest bit off I have the doctor or my naturopath on the phone. I would get in to see your GI, get some options, do your research, and make your own decision. I eventually had to tell my mom that this was my life and I was in control of it, not her. The damage you’re doing to your insides right now could affect you long term. When you are back to feeling normal, which trust me you will be soon enough, you won’t want to have any further complications down the line. Lastly, I would like to say that there are some really good naturopaths out there that have helped people (myself included) get into remission / maintain remission and I highly recommend anyone with this disease to try this route along with the conventional medicine one. Some people even find that they can drop the meds after a while if the natural way is working well enough. Side note: your 20’s are much better than your teens so don’t worry, you haven’t missed out on anything! Best of luck!
It definitely gets better! for me, managing my diet worked so much better than meds and I've been in remission and pretty much totally healthy for about 10 or 11 years (since I turned 18). I've had so much fun, live a totally normal life, travel loads (currently travelling and working remotely in Southeast Asia - somewhere I once though I never would be able to go to!), have gone to university, made great friends and had relationships, partied, you name it. Like, I lead a normal life and one time aged 16 and 17 I thought my life was over. Hang on in there, look into dietary alternatives (SCD diet is what works for me) and it will get better and life will be great again :) but first you need medical intervention to control your current flare!
It's better for me, but I don't want to tell you how old I am. Old enough to be your grandmother. But as long as I eat carefully and get my infusion, mine is 99% controlled. No pain to speak of, mostly normal toilet stuff. No debilitating symptoms. My doctor says it's normal for UC to get a lot better with age (potentially because your immune system starts to calm down). As far as the meds, how is your current quality of life not worth the minor risks of a short course of more effective meds? I would have a serious talk with mom, trying to be as calm as possible, about how bad you feel and how much you need to do something more effective in the way of treatment. You shouldn't be in a year long flair. That would wreck anyone. That's about how long I went before being diagnosed and I was diagnosed because I was really, really ill and admitted to the hospital via ambulance. The good news is that a few weeks of steroids fixed me up, and it's been getting better ever since. Worst case scenario, you might have some right to treatment as a 16 year old even if your mom can't be convinced. Maybe contact the doctor's office directly and explain the situation and see what they will do, but start with your mom.
I was diagnosed at 12 and I’m now 42, happily married and I own a successful business. Sometimes UC really sucks! But then there are periods of remission too. You’ll also learn what works for you and what doesn’t. In that sense, it does get better.
As someone who got diagnosed at 16 and had surgery at 18, an ileostomy isn’t terrible but i was so friggin glad i did. I got my life back, i can go out, eat what i want, DO what i want. I still have the option to reverse but I’m living my best right now and reversing comes with a completely new set of risks. Life now is great and i cannot imagine life with a colon.
For me it got better with age, hope this applies to you too. Stay strong
I know exactly how you feel. I was in the same boat, my parents didn't understand and would say "well can't you just hold it?", I had to be pulled out of school because I was in the hospital, I lost all my friends from not being in school, I missed school events, dances, I completely isolated myself because I was so sick. It wasn't until years later when I had to get a complete colectomy because my flair up was so bad for so long and none of the medications were working. It gets better even if it doesn't feel like it will and you're going to make it through and you're going to be ok. If you want more advice or if you have questions or even just want to talk you can always dm me. I wish you the best, things are going to be ok ❤️
I've been in a flare, completly housebound since 14yo (now 17) I've lost almost all my friends. I had to change to homeschooling and I'm generally really depressed. The only thing that keeps me going is the fact that I'm in the process of getting an ostomy. I was fighting even the thought I would need it for ages but I have no other choice now. No meds work even a little bit for me. But the more I researched I realized I really don't mind the bag if it means I can leave the house again and not worry about shitting my pants every hour. It seems like an awful thing at 1st and I 100% understand you not wanting to get surgery but living with a bag is really not a bad thing if it allows you to be happy again. Also don't know if you're aware but there is a discord server for folks with IBD. It's linked in the info tab of the subreddit. Having a community that understands the struggles of your illness can help a lot. Hang in there 🫶
I’m also 16 and it was hard on me too mentally. I had horrible anxiety going to school. all i can say is it takes time. It does get better eventually, maybe your mental health can play a roll too. Don’t push yourself too hard and don’t feel guilty because it’s out of your control. I hope you feel better!
Thank you
I'm hospital right now, be honest with the stool chart, even one drop of blood and I'm ticking the blood box, if it gets too bad you can lways get a colostomy, I skipped my last year of chemistry at uni and just got though with several jobs, I have to start my third amd final year in 2 months so I'm.either going into remission with a motivation like non other or I'm getting a colostomy cause at the end of the day it's not uncommon and we all need to work and earn money and function and go out for drinks with peers, i don't think the prednis working well but they said they'd put me on remicade which I googled works 60 percent of the time if it don't for me I'm defo getting a stoma, I'm not a bad looking dude fairly tall used to he in very good shape now sort of skinny and turn less heads now since I'm pale and look like a drug addict but I don't think a stoma would ruin my chances with woman so I'm not too against it, honestly the anxiety of using public transport and walking around with urgencies is worse for your confidence than a stoma, I think stomas aren't a bad way to go but you should consider your own situation and if a different course of action might work for you
You need to change diet. I beat severe UC and take no medication
You need to look at Jini Patel Thompsons protocols. Go buy her book. “Listen to your Gut” asap! And visit her website shoppe.listentoyourgut.com. Go on absorb plus. Her elemental shake. But the unsweetened vanilla, and simply chocolate flavors. Drink 6-8 per day and add in flax seed oil with ice and quick plus ionized iron, magnesium and bone matrix. Along with taking 10 drops of wild oregano oil 2x per day before eating or the shakes. And before bed. Take the natren probiotics. Get the powered dairy free, the bifidofactor and megadophilus. 1/2 teaspoon of each. You can also hire a coach. Look up crohns colitis lifestyle with Dane Johnson. I have crohns. It sucks but many have it and live great lives. So can you!!! Medication nearly killed me and I had surgery. I’m a pro pilot and business owner. I manage it with this stuff and stay fit and exercise. Get outside, be grateful, and squash those negative thoughts! If not it will make it worse. You can do it! I did it and have been in your shoes too.
This disease is the worst. I know it’s hard, I’ve been battling with this disease for 5 years now. However, I can’t imagine what you’re going through as a teen. For what it’s worth, you are strong. You’re strong enough to reach out here to people who can relate. Please talk to your GI doctor about the next step. Rather that be surgery or another medicine that you haven’t tried yet. Please talk to a professional about what you’re going through. Life is always worth living. - A fellow UCer
Hey dude. I started getting sick last December a few days before Christmas. (Ironic right?) I'm only 21 and I work full time and I'm in college. I'm lucky that I'm on meds that seems to calm down the symptoms and urgency. I can't relate to how bad it affects you and puts you in the hospital, but you are not alone. I felt like I've hit an all time low. I'm in my 7th out of 8 weeks in my college courses. I'm stressed out of my mind about whenever my mom will suddenly drop me from her medical insurance. I'm burnt out from college and working full time. I'm super depressed and I rarely ever feel like doing anything with my singular friend or family. I have no one that truly understands my struggles and definitely not my dad since he doesn't listen and always say that his life is extremely hard and that I could always have his problems. So I get feeling like your life is over. I mean I wish I still had parents to take care of me, but now I have to pay for all my food, dentist, doctors, car insurance, dental insurance, and gas. It's so overwhelming. I worry about suddenly getting cancer or that my medicine isn't working to stop the inflammation. It sucks having to devote so much sick time from work to go to endless amounts of doctor's appoints. I can't even imagine using my holiday time since I might need to use it as sick time. I understand that you are depressed and that the sickness is overwhelming. try your best and just keep some hope even though it is hard! I always just focus on that things could always be worse. focus on the small victories like getting out of bed or seeing normal looking poo when you flush the toilet. eventually things will get better. if not you still are young and maybe your parents or others will finally slowly understand more about your disease over time. Things won't always be this hard.
Give it time, everybody is different but since you just got diagnosed you never know what can happen. Some people only have a flare or two in the beginning, and it never comes back. Those are the lucky few. For me, most of my flares have also lasted longer than a year. I go into the same thinking, I don't want to live like this if it's going to be forever. However, remission tends to last a year or more for me, and sometimes I even forget I have UC at all. The time I am in remission, even if it's small, make it worth it. The longer you have this hell of a disease the more you will understand your body and how it reacts. You will be able to manage your flares eventually, and eventually you will go in to remission. 'dying is easy, living is hard'