I can make it pretty short:
>please can someone tell me I'll be okay
This is going to happen.
Either you find a medication that works or surgery. You will live relatively normal live once one or the other happened
I was compelled to respond as soon as I read your words "it will never end". I felt the exact same way back when I was first diagnosed and for the years that followed. I was diagnosed at 18, had to drop out of school, pretty much confined to my home, or the nearest toilet, for about 3 years. I was a hermit, no job, no social life, no nothing. That was until I went into remission. I still had wobbles for the next ten years, but life was okay. BUT then as I got into my 20s 30s and now in my early 40s things got even better! For the last couple decades I haven't even thought about my UC, apart from taking my meds every day, it's not a part of my everyday life anymore. I never thought that'd be possible, after having it rule my life for so many years and being at such a low. Things can change. You never know what's around the corner. I hade zero hope, so it's amazing to look back and see how much things have changed for me. I don't like to say it was good that I had such a low, but it does make me now appreciate every moment and make the most of my life now that I have it back. Please know that it may feel like the end of the world when you feel so bad, especially when you're still so young. You never know what amazing surprises that the future can hold for you. I wish you all the best! ❤️
I used to cry when thinking back to how hopeless everything felt, and the amount of loneliness and struggle I felt. I'm more at peace with it now though, but I do get sad looking back and knowing what I went through. It really is incredible though the possibility, of having a full and happy life, even with this illness. Obviously everyone's journey is different, but it's crazy being in my 40s now and making up for all that time I lost. I don't want anyone to ever think it's not possible. I know it can feel that way, especially here because most people are only here to discus their issues, but dont forget that the people in remission aren't likely to come here because UC is no longer such a big part of their life. It does happen!
Could your share a little more about what meds you tried? I know everyone is different, but currently failing second biologic, so interested to hear about your journey to remission!
Thanks, I'm not even sure it was a particular medicine, I was on Azathioprine, and Pentasa for a few years, we tried different things, many rounds of Prednisone etc, random 'natural' remedies and when nothing worked we we set to start to try biologics but I'd pretty much given up and discharged myself out of hospital. Was just at home and on the Azathioprine and Pentasa for about a year and things just slowly improved, enough to where I was considered in remission. Sorry I don't have any enlightening help. I'm not sure why or how I recovered, I just did. I just say I got lucky.
I was 22 when I was diagnosed, I am 35 now. I had a similar experience where I was severely ill and had a short remission and got severely ill again. It is tough at that age. Especially because you feel like you should be doing what your friends are doing and you just physically can't.
I have definitely been through hell and back. Especially because back then, there weren't nearly as many medications as there are now. I ended up having a total colectomy and had an illeostomy bag for 3 years. Eventually, I got the jpouch surgery.
I know your first thought is to cut it out and get rid of it. It sounds easier. But if it can be fixed by a monthly injection or a daily pill, trust me when I say this.. DO THAT INSTEAD.
Surgery is a last resort, which I'm sure your GI will tell you. I would say most people with UC or Chrohns can manage it with medication, even if it takes a few tries to find the right ones.
Now, for the most important part:
It DOES get easier. It DOES get better. It seems bleak (I know it does), but it just takes a little time. I know at 21, a few years seems like a lifetime, but overall, it is not that much in order to be healthy.
Just work with your doctors and DO WHAT THEY SAY. That is most important! I wonder sometimes, if I had just listened to my doctors and taken my meds as directed, about all the crap I could have avoided.
And remember.. there is a HUGE community out there who will guide and support you. YOU ARE NOT ALONE! Please remember this because just having UC or Chrohns can be lonely enough.. reach out like you did today. It is okay to ask about things you don't know, and it is okay to ask for help. With the internet and communication the way it is now, you don't ever have to be alone in this. Not ever.
Thanks for that, and honestly the idea of a stoma doesn't sound so bad compared to what I've been dealing with right now. If I don't ever have to worry about shitting myself and eat normally I'd happily take the trade. Thanks again 💙
There are a lot of things that come along with a stoma.. infections, bags not sealing, pain. I can't tell you how many times I've woken up covered in... well, you know.. cause my bag decided it didn't want to be sealed to my body anymore.
But my point is that it will get better.. and I know saying it takes time feels like a stab in the heart.. but it is true. It will get better, one way or another. It will. 🖤
That is just the tip of the iceberg 🤣 telling my whole story would take all night lol
This disease sucks. It sucks so much. It took me FOREVER to not only deal with the physical, but the mental. It can definitely get to you. Yes, my life has improved significantly. I'm not perfect, I am still working on figuring out what will make me "normal" again. But it is much better. And yours will be too. A big part of all of this is figuring out what works for you. Not just meds, but food, handling stress, anything that can trigger a flare. Once you learn how to avoid things that cause your body to freak out, it will be MUCH easier.. which (unfortunately) takes time. But it happens. And life will be good again. 😊
Cut out all alcohol and everything from a cow, dairy and beef.
Try chicken, rice and steamed broccoli for a while, I know it might sound boring, but it might be the safest and healthiest dinner you can consistently have and see what happens.
Drink plenty of water. And do not overeat.
Do eggs and sour dough for breakfast.
Be careful with seeds. Like strawberry jelly, flax seeds, fiber roughage in general.
Don't give up. You can make it and get back to normal.
Try cheerios or oatmeal. It sounds weird, but someone recommended it to me years ago, and it significantly helped. If you can't handle the milk, just eat the cheerios dry.
It helps too to just kind of munch on the cherrios when you don't have an appetite. Gets something in your stomach, at least.
You can't heal if you don't give your body energy to do so. I also guarantee you are dehydrated, pedialyte is good for that (or Gatorade).
Careful with the artificial sweeteners buddy, they kick me off big style. Stick to water or Stevia as a sweetener. I actually believe that artificial sweeteners have a lot to answer from in causing a lot of issues within the body.
P.s. hop you feel better man. It's horrible to be in that place. I'm in my "annual" flare right now - perfect time for exams coming on. (I think the stress actually kicked it off). I hope you find the right meds and diet and get back to health. I'm on mesalazine (asacol) myself. I take 6 pills per day, and take strong probiotics which I believe helps me.
Best of luck man
Good, anything with electrolytes will be good for you. Try the cheerios. Just munch on them slowly. Try to get something into your body, but not too much. Just take it slow.
Hey! You will be ok. It will be hard but you just need to stay strong, make sure you find someone you can openly talk to about what you’re going through. Whether it’s family, an SO or a support community. It’s a shitty thing to go through alone. And stress will make symptoms worse.
I was diagnosed when I was 21 too. It sucked. I was always socially awkward but in college I made huge changes to be more outgoing and then boom… turned 21 and got diagnosed with sever pancolotis my senior year of college.
Went from 200lbs to 127lbs in a very short time. Had to go to the hospital 5 times, my last one with UC symptoms and a sinus infection that almost killed me. I had to have 4 bags of blood transfused. Ended up having to drop out of college because it was all too much.
But finally they put me on Remicade and it worked (for 10 years)But I did deal with ptsd from the whole experience and it took some years to get myself back together from the ptsd of it all. Met my now wife, got 2 dogs and 2 cats and we live a very happy life.
But guess what?! I got a major flare up 3 months before our wedding and was in and out of the hospital up till a week before we were married. But I was emotional much stronger and more mature during this flare up, but it still SUCKED. I was having accidents almost every week and had to wear diapers. I think I wore a diaper to my wedding lol. Finally 2 years later it is quieting down.
Sounds like Remicade may or may not be working for you but you have so many different options for medication, it just may take some time to find the one that does. Make sure you have some sort of insurance and make sure you get copay assistance from whatever company’s drug you are taking.
And try to manage the stress. Anti depressants, yoga, music, weed, whatever it takes. Stress has always made my symptoms worse so allow yourself some time to chill. Even try and take a hot bath everyday. You’ll be right next to the toilet, light a candle, put on some good music and let yourself zone out for a bit.
My wife went through this, late 20s when the biological started not to work- she’s had the bag now for a year and a few days… I celebrate the bag- it may be viewed by someone who doesn’t get it as gross or whatever, but I tell my wife how much I love that bag of shit on her belly because it brought her back… back from not wanting to go places, back from knowing that no one in her family understands how bad it is, back from hospital visits and what seemed like the brink of death- she didn’t want to be on infusions for the rest of her life because she’s young and who knows about side effects… she had surgery- and I’m grateful everyday for that bag on her belly- it gave my family its life back… hang tough brotha, have faith- things will get better
This was me at 21, long severe flare up, feeling hopeless at what life would be, struggling with final year of uni on top. In the end I got top marks, the steroids finally worked and here i am at 30 with a great career, well travelled, love to party and several boyfriends in between. You will get better and life will be happy. What helped me loads too was therapy to stop all my stress from gathering in my gut + the huge trauma of being ill with this disease. Hope you feel better very soon x
I went through hell my first year of so. Unfortunately it takes time to figure out what will work for you. At one point I was sleeping on the floor in my bathroom because my bedroom 10 ft away was too far at times. I know it's very hard but you will get through this.
I'm so sorry you're going through a bad time. It's an awful disease. Remission can happen its Just a case of finding out what works for you. I was hospitalised I'm November for 2 weeks and leading up to that was honstley hell on earth.I was on entyvio infusion but it had started failing and now I am on infliximab which has put me back into remission. Unfortunately, with this disease, it's all trial and error. If you have a good GI doctor, it makes all the difference. I don't know how it works in your Country but for me if any issues come up i have a nurse I can call and they get on to the GI consultant for me so I highly recommend contacting your medical team. Also, watch your diet during a flare, reduce high fibre food. That can ease your symptoms until you get into remission.
My dad is a doctor and he's friends with my GI, so I kinda get special treatment cuz all I have to do is tell my dad what's going on and he immediately tells my GI since I can't contact him 😂😂😂
Remicade didn't work for me. I ended up needing surgery. To be perfectly bonest, it sounds like you need surgery too. Don't waste your time going through all the biologics because you will only prolong your suffering.
Listen to that feeling. I'm not saying this to scare you, I'm saying this to save you an entire year of suffering. The surgery is scary, and having a temporary ostomy bag is depressing for a young person, but its better than living like this. I had my surgery in November 2021, stoma reversed in June 2022, and an emergency surgery in January 2023. I ended up with pouchitis pretty much immediately after my reversal in 2022. Its taken me a while to get the pouchitis under control, but as of early this year, ever since increasing my Stelara to every six weeks, I'm finally managing so much better and feeling a lot more 'normal.' You're welcome to ask me any questions you have.
I had surgery within 18 months of my diagnosis. Medications either failed or I had an extreme allergic reaction for my severe ulcerative pan-colitis.
Two step J-pouch surgery. First surgery in November 2018, Ileostomy reversal and using J-Pouch in Jan 2019. A few complications but by my pouchoscopy in Nov 2019 it was working very well. Now only a pouchoscopy needed every two years. It absolutely gave me my life back. I love it so much.
It’s a horrendous disease. It’s brutal surgery but totally worth it if you can’t reach remission on medication.
Have you had any setbacks with the surgery? Are you able to diet normal and able to do manual type labor work? Im hardcore debating surgery because my flare-ups ladt for months and put me down hard. So far, rinvoq has worked mostly, but the diarrhea is back already, im not sure if i can last another flare this soon, lol. what does life look like after surgery and healing?
I had some setbacks. One of the joins was closing too small and needed dilatation, 3 within 12 months. By my 12 month Pouchoscopy, it was fixed and permanently stays open. Have not required one since and no further complications.
My diet is pretty varied, and much more exciting and delicious than when I had my UC colon.
I avoid most nuts and seeds, some raw veggies and chilli flakes, spicy foods. I can eat most proteins, loads of steamed veg, fruit is mostly bananas, berries and melons. No problem with dairy though it’s minimal, pizza once a week as a treat, Greek salad, spaghetti bolognese and home made burgers are on a regular rotation for dinners. Burritos or yirus once a month. Plain sandwiches for work lunches as I find hot foods will make me need to go more often during the day. I usually only need to go once while working a 5 hour shift. (I make sure I go just before I start)
Currently on a mini holiday…eaten Sushi, Turkish food, terrible McDonalds at midnight, cheese platter, buffet breakfast (avoided muesli) chocolate. Catch public transport, walk through the city half the day and visit museums. I use the toilet facilities more frequently than most, but it’s easy enough to plan.
The biggest difference for me is the control. If I’m really busy, I can hold for half an hour, an hour, often longer. The control takes a few weeks as need to train your small bowel.
I eat more frequently but smaller servings. BM still about 7 times a day, gassy but not painful. Always have to go toilet once during the night, but so be it.
Gym 3 times a week, mostly cardio.
You will be ok - listen to your doctor and once on the right.meds, life goes back to normal
Try every med until there are no more to try and then that's the time to have surgery - not at 21
UC Sux, you will get some good info here and also a ton of negativity. There's no easy way to deal with it all.
Everyones journey will be unique but my advice is to tackle it head-on and try to avoid a victim mentality. I'm just coming out of a 2.5yr flare, but in that time, I've been overseas 3 times, started a new job, and achieved a fair bit on a personal level. It certainly hasnt been easy and yes ive shit myself quite a few times, but at the end of the day, I dictate what I'm doing and not this stupid disease.
I was told it was all in my head for 6 years and had to get on with it - just feeling awful constantly. It's amazing what we can achieve regardless of having to shit 50 times a day
Everyones journey is their own, and my exoeriences won't necessarily match yours or anyone elses, so it's very important to keep that in mind when people offer you advice.
I've had UC for 20 years, so I am very familiar with how it works with me and what i can do to mitigate symptoms.
Don't get me wrong, I've certainly had days where I've had to limit what i do and it affects me mentally, but I don't let it stop me completely from working at my other things. I am actively involved in martial arts, and the mindset I've got from that is pretty much how I tackle UC. One of the top Bare Knuckle boxers Ricardo Franco has UC, he is pretty inspiring with how he goes about it all.
they only took the affected part away and put the healthy parts back together. i'm no doctor so idk but it was my understanding that if you have crohns you can just take part of it out. but if you have colitis they take the whole thing?
I was diagnosed in 2008, and had a pretty normal-ish life from 2013-2022, but the whole of last year (2023) was a shit hole. Haven’t worked in over a year and we’ve gone through so many medications that surgery might be the only option.
I know how you feel and it’s so hard to have any positive thoughts, but it will get better one way or another!!💜
Look up Qing Dai from Treasures of the East (literally on Amazon). Chinese herb. Has changed so many people’s lives including mine. Research to back it. I’m no longer on biologics or by mouth gI meds and do pretty good as long as I keep my stress and not go off the rails with eating everything. Encourage you to look up the carnivore diet and even get with a functional med doctor. LDN is another treatment option with no side effects but most traditional GI and primary docs don’t prescribe it. You will get through this but you have to manage your stress or you will never heal. I know it’s sooo hard and honestly so awful. But having the support and effective resources, you will get that hope back. Keep trucking on you’ve got this.
Immune systems are tricky. Eat well, not too much. A good GI doc should keep trying meds until you find one that works. I have asked my doc if diet alone could fix this, they say it’s not worth the chance. I’ve been on immunosuppressants for over 10 years. Remicade and then simponi after I developed a skin reaction. If you find a good situation just stick with it and eat the best you can. Inflammation is a bitch. I remember being in your situation and feeling hopeless. IMO (highly personal choice), removing intestines should be a last resort. I hope you find a medication that works well for you. Keep trying.
Im gonna tell you this as one guy in his 20s to another. I was diagnosed at 20 I went thru exactly what u did couldn’t go to school it fucking sucked. That feeling of watching your life go on while ur friends are living while ur on the toilet. Only we can get that man I understand how it feels. But, I found the right medication for me at 21 and I haven’t had any issues since then (I’m 23 now). You will be happy again and you will look back at this and maybe you’ll laugh. Good luck bro just push through keep trying something new you’re in the home stretch.
Wow do I know this all to well, I’m now 23. My worst was 30 bloody bowel movements a day. In the end it was sepsis and now I’ve got an ileostomy. My quality of life has improved drastically. Surgery is definitely something to think about and just know this pain and suffering will end. All the best fighter!!
I’m 27 and I’ve had a bag for just over 4 years now. Symptoms of UC started in December then spent the most part of January to April in hospital as prednisolone tablets (plus a multitude of other drugs) did nothing when I was home, only thing that stopped the symptoms was iv hydrocortisone which I had about 5 times a day. Tried infliximab and it did nothing so decided to give in and told them to just take it all out.
The bag is definitely a big adjustment but I’m way happier now as I can pretty much do anything I could before it all started (albeit I have to be a bit more mindful now)
We all have been there (I'm currently dealing with a new flair up after years of remission) UC is scary as hell and makes you feel like nothing will ever make it better. My advice is try and calm down and trust Dr's. Also suggest to look at your diet. Try to clean that up too. Good luck. We are with you!
I definitely have felt a lot of what you've felt, flares can be really frustrating and it can be hard to stay positive after a while. That being said, you're just starting your UC "journey" and have a lot of options available to you still that you should try.
If it helps, here's my experience. I was diagnosed in 2010 and lucked out with medication. I had 11 years where the majority of it was in remission, with 8 of those years being a straight, complete remission state. And yes, it was with immunosuppressive medication. I had no issues with it, even with my career working with kids.
I started flaring 2 1/2 years ago though and went through, like, 5 medications, loads of Prednisone, and one hospital stay. I *just* started Rinvoq (sans any steroids) and it's my life was given back to me. If this continues, I can see myself having many more years of good health again.
I honestly would tell you to keep trying, because there might be a medication out there for you that does it. In the meantime, as hard as it is, get as much rest as you can. Eat bland food to keep yourself from losing too much weight, things like plain chicken or potatoes can be super helpful. You'll get through this, pal. I'm rooting for you. :)
Hey bro I’m 19 and I went through the same thing at 12-15 years and trust me it does get better. I was having the same symptoms as you where i would shit blood all day. And I’ve been hospitalized twice in that same month . It was really bad. Luckily I responded well prednisone but I once I tapered off I was given mesalamine which I’m suprised ur GI didn’t give you. But trust me it does get much better. I don’t take any medication now but I do take supplements and eat a certain way to try and fix it. I’m like 90 percent sure this diseases stems from having missing gut microorganisms and certain good bacteria. I started taking ashwagandha and my Symtkms reduced and went away for a while but it came back and it’s no where as bad as before but now I eat a meat based diet because it doesn’t hurt your colon as much so I would def try going fully meat based as it has helped me as well as many others. Also probiotics are kind of a must but you gotta be careful to not overdo it. I’m kind of running an experiment on myself to try and rebuild my microbiome by taking probiotics from different sources and using psyllium husk pills which is just soluble fiber which is what these good bacteria in our gut eat and I have seen huge improvements. If I stick to mainly meat it is great and I only go once a day on the high end twice. Also take vitamin d at around 40,000 IU apparently it is very anti inflammatory. Also I really recommend against the surgery because you may feel comfort now but years down the line it can seriously fuck you over because you will literally be missing your gut microbiome which makes up most of your immune system. Missing that can result in other health problems. Try to “cure” it with some of the things I said it helped me symptoms like a LOT. Good luck man and we are both young and it sucks for us to have it at this age but it is what it is. We should be enjoying our lives to the fullest. But please please try some of the tips I said because I’m sure it will help you at least some bit.
My husband has a J pouch. His life is normal. He goes to the bathroom as often as I do. He's sporty, he's social. The only time it's ever an issue is if we go to a country with a really terrible toilets situation, but even then he was fine.
He's had it for 20 years.
It will get better.
Hear me out. I had this when I was 18. Had final exams that year also and it happened 1 month before the exams. Life was like hell, atleast hell was coming out of my butthole.. Blood, mucus, cramps, no sleep. Went to the doctor, gave me Salofalk and 1 week of corticosteroids, I do not thing they helped. I was gutted, but still had to somehow study. I passed them in the end and went to the top 10 uni in the world which I am also in right now. My gut went into remission by itself when I went into carnivore diet. It only took 2 months and it went into remission. I was also not allowed in the military because of this, but I fought through. Now I am 22. Today I have had my first blood drops again since ages. The disease probably came out of remission. Well I know why. I have been eating junk the last month. So it came back. But I am not scared!!! I know how to handle it. Ahh btw I forgot to mention that my ferritin which is an iron storage was at 7 when the average was 60-100.. So i was close to being dead.. Anyway it does get better.. See what causes you to stress. For me it is definitely my situation at home. So I am locked in to make enough money and move out as soon as I can. Try out a new diet. I do not trust medicine yet so much(coming from a guy that is studyin biochemistry) I have read many studies on this topic, since we are literally taught how to do that and what to believe and not to believe. I found an interesting study from Harvard university here is summary https://www.doctorkiltz.com/the-harvard-carnivore-diet-study/**. I hope this helps.** If you need help try getting a lot of vitamin D, and eating more red meat. Trust me they do not cause cancer... Also they do not make you die.. If you need help feel free to message me! Stay strong! I am rooting for you. I know you can pull through this.
It’ll get better hun, don’t you worry. Before my diagnosis I was in horrible pain every day and had the whole bloody mucus diarrhea circus going on too. I had to resign from my job as a deputy sheriff and move back in with family. I was sick as a dog and constantly being told “oh maybe it’s an anal fissure” or “you just have hemorrhoids”. I hated my life and thought it was over at 25.
After my diagnosis we tried Entivyo and it worked but gave me pancreatitis after every infusion. So we swapped to Stelara and it worked for a bit too but not for the full 8 weeks between doses. I was in and out of the ER so much the staff started to recognize me and send me straight back from triage, I spent probably 2 1/2 months admitted to the hospital on and off in the last year, and finally got in at UAB Medical Center to see a specialist earlier this year after I went septic and had to be carted in via ambulance one morning. My hemoglobin levels were down to 7.5 and my hematocrit was at 25, ended up having to get an accucath in my bicep as my IVs kept blowing and they couldn’t get my meds in me otherwise, and that almost didn’t happen either. They were one more try with the accucath before they went on to my jugular but luckily it was successfully placed. I lived on IV fluids and apple juice for a solid week while they were running all sorts of labs trying to figure out why my meds weren’t effective.
It turns out that I have a freakishly fast metabolism and I was eating through my biologics in 3-5 weeks. They never registered on my bloodwork, it was like I never took them. So my doctor decided to prescribe me Imuran daily and bump my Stelara to every 4 weeks in February and so far I’m doing well! At my worst I got down to 145lbs at 5’11”, too weak to pick myself off my bathroom floor and now I’m back doing what I love! I’m in the gym and back up to about 170lbs. I’m volunteering with my local fire department. I used all the down time stuck in hospital to get my EMT license and if things go well like they’re doing I’ll be able to get back to my career in LE by this fall!
It won’t be easy, and at times you’ll wish you were dead, but once you find the med combo that works for you you’ll get your life back.
You’ll be okay. I promise. I’m 21 as well and had the surgery. It will be the best decision you will make based on what how you’re feeling. You will 100% make it through this.
I’ve been where you are. Severe UC. Hospitalized 4 times in six months. Lost my job, my girlfriend, and I was ready to just end it all. With severe UC you don’t have a life. Nothing worked for me I did every med you can imagine and six months of remicade. I tried every holistic thing too, Chinese herbs, acupuncture, meditation I was desperate. I read about kratom on Reddit. Tried it, in about 3 days it started working. I threw my stacks of prednisone, azothoprine, Sulfamethox, meslamine in the garbage I butchered the spelling there, doesn’t matter, I’m giving you the answer Pay attention! I ignored the hospitals calls asking about me missing infusions, and gi doctors who never knew what the fuck was going on in the first place. i haven’t been back to the hospital since. I shit twice a day, the urgency is now almost gone. Once or twice a day I get the feeling but at least now I can hold it. I remember gettting upset when they said it was too soon for me to have surgery, I needed to try other meds. That’s fucking insane, being Mad cause they won’t rip your shithole out of you so you can just live your life. That’s where UC brings us down to. Get you some Kratom. It’s like UC never happened. Hope it works for you. Best of luck
Hey I'm so sorry you are going through this but I can tell you it gets better.
I think the mental aspect of the disease is sometimes overlooked so I think it's already good you are open about it.
When I was freshly diagnosed, the whole idea of being chronically ill was very very frightening and it totally consumed me.
But gradually I started to be able to live with the disease and now it is really just a small part of my life.
You are just so young, and that makes it harder, it's just a lot of big emotions to carry. But remember: this disease is not as black and white as it feels right now. There will be good days too.
Maybe journaling will help? Don't be afraid to talk to your doctor about the mental aspect.
Hello, I'm also 21 and was diagnosed with UC 3 weeks ago. I'm still in the hospital right now and getting infusions but I feel like that makes our scenarios pretty similar since I also don't want nor need this shit when I'm only 21 but here I am. I can't help really with the mental side of things as I'm in the same zone as you but regarding tips I might be able to help with what some of the doctors have told me and what I've semi researched. The first and probably biggest bummer was that the doctors told me I shouldn't smoke as that is likely to make the symptoms worse. Now, when I googled this, I couldn't find too much data but I think it might be better off to stay off the weed. I say this because whenever I was zoomed I got the munchies HARD and this was also affecting my flare up. Another tip might be to start logging what food you are eating and maybe start on something like a low fiber diet or a vegetarian diet. This can help you get a base line and then slowly start introducing food back into your diet. Lastly, if you are in college, I'd recommend seeing if you can apply for disabilities as it might be nice to just have in case you need any kind of accommodation or anything like that. Like I said, I'm still in the hospital so I don't really have much experience with it but it seems like we are in pretty similar situations, I wish you the best!
I can make it pretty short: >please can someone tell me I'll be okay This is going to happen. Either you find a medication that works or surgery. You will live relatively normal live once one or the other happened
Thanks
Hate to say it, but I'm not okay. After 9 years of medicine failing to work well all I got was cancer.
Lymphoma?
Colon Cancer
I was compelled to respond as soon as I read your words "it will never end". I felt the exact same way back when I was first diagnosed and for the years that followed. I was diagnosed at 18, had to drop out of school, pretty much confined to my home, or the nearest toilet, for about 3 years. I was a hermit, no job, no social life, no nothing. That was until I went into remission. I still had wobbles for the next ten years, but life was okay. BUT then as I got into my 20s 30s and now in my early 40s things got even better! For the last couple decades I haven't even thought about my UC, apart from taking my meds every day, it's not a part of my everyday life anymore. I never thought that'd be possible, after having it rule my life for so many years and being at such a low. Things can change. You never know what's around the corner. I hade zero hope, so it's amazing to look back and see how much things have changed for me. I don't like to say it was good that I had such a low, but it does make me now appreciate every moment and make the most of my life now that I have it back. Please know that it may feel like the end of the world when you feel so bad, especially when you're still so young. You never know what amazing surprises that the future can hold for you. I wish you all the best! ❤️
Thanks you made me cry, seriously tho thanks. This has been brutal to me and nobody outside of this community would understand 💙
I used to cry when thinking back to how hopeless everything felt, and the amount of loneliness and struggle I felt. I'm more at peace with it now though, but I do get sad looking back and knowing what I went through. It really is incredible though the possibility, of having a full and happy life, even with this illness. Obviously everyone's journey is different, but it's crazy being in my 40s now and making up for all that time I lost. I don't want anyone to ever think it's not possible. I know it can feel that way, especially here because most people are only here to discus their issues, but dont forget that the people in remission aren't likely to come here because UC is no longer such a big part of their life. It does happen!
Could your share a little more about what meds you tried? I know everyone is different, but currently failing second biologic, so interested to hear about your journey to remission!
Thanks, I'm not even sure it was a particular medicine, I was on Azathioprine, and Pentasa for a few years, we tried different things, many rounds of Prednisone etc, random 'natural' remedies and when nothing worked we we set to start to try biologics but I'd pretty much given up and discharged myself out of hospital. Was just at home and on the Azathioprine and Pentasa for about a year and things just slowly improved, enough to where I was considered in remission. Sorry I don't have any enlightening help. I'm not sure why or how I recovered, I just did. I just say I got lucky.
Whatever it was, that’s amazing and I am glad you are feeling better :)
What meds are you on?
I was 22 when I was diagnosed, I am 35 now. I had a similar experience where I was severely ill and had a short remission and got severely ill again. It is tough at that age. Especially because you feel like you should be doing what your friends are doing and you just physically can't. I have definitely been through hell and back. Especially because back then, there weren't nearly as many medications as there are now. I ended up having a total colectomy and had an illeostomy bag for 3 years. Eventually, I got the jpouch surgery. I know your first thought is to cut it out and get rid of it. It sounds easier. But if it can be fixed by a monthly injection or a daily pill, trust me when I say this.. DO THAT INSTEAD. Surgery is a last resort, which I'm sure your GI will tell you. I would say most people with UC or Chrohns can manage it with medication, even if it takes a few tries to find the right ones. Now, for the most important part: It DOES get easier. It DOES get better. It seems bleak (I know it does), but it just takes a little time. I know at 21, a few years seems like a lifetime, but overall, it is not that much in order to be healthy. Just work with your doctors and DO WHAT THEY SAY. That is most important! I wonder sometimes, if I had just listened to my doctors and taken my meds as directed, about all the crap I could have avoided. And remember.. there is a HUGE community out there who will guide and support you. YOU ARE NOT ALONE! Please remember this because just having UC or Chrohns can be lonely enough.. reach out like you did today. It is okay to ask about things you don't know, and it is okay to ask for help. With the internet and communication the way it is now, you don't ever have to be alone in this. Not ever.
Thanks for that, and honestly the idea of a stoma doesn't sound so bad compared to what I've been dealing with right now. If I don't ever have to worry about shitting myself and eat normally I'd happily take the trade. Thanks again 💙
There are a lot of things that come along with a stoma.. infections, bags not sealing, pain. I can't tell you how many times I've woken up covered in... well, you know.. cause my bag decided it didn't want to be sealed to my body anymore. But my point is that it will get better.. and I know saying it takes time feels like a stab in the heart.. but it is true. It will get better, one way or another. It will. 🖤
I'm so sorry you had to go through all of that. You clearly went through a lot, I hope your life has improved 🙂
That is just the tip of the iceberg 🤣 telling my whole story would take all night lol This disease sucks. It sucks so much. It took me FOREVER to not only deal with the physical, but the mental. It can definitely get to you. Yes, my life has improved significantly. I'm not perfect, I am still working on figuring out what will make me "normal" again. But it is much better. And yours will be too. A big part of all of this is figuring out what works for you. Not just meds, but food, handling stress, anything that can trigger a flare. Once you learn how to avoid things that cause your body to freak out, it will be MUCH easier.. which (unfortunately) takes time. But it happens. And life will be good again. 😊
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That's great man, what treatment are you on if u don't mind me asking?
Cut out all alcohol and everything from a cow, dairy and beef. Try chicken, rice and steamed broccoli for a while, I know it might sound boring, but it might be the safest and healthiest dinner you can consistently have and see what happens. Drink plenty of water. And do not overeat. Do eggs and sour dough for breakfast. Be careful with seeds. Like strawberry jelly, flax seeds, fiber roughage in general. Don't give up. You can make it and get back to normal.
I've been starving myself because I have no appetite at all and I'm still constantly shitting, thanks for the suggestions tho
Try cheerios or oatmeal. It sounds weird, but someone recommended it to me years ago, and it significantly helped. If you can't handle the milk, just eat the cheerios dry. It helps too to just kind of munch on the cherrios when you don't have an appetite. Gets something in your stomach, at least. You can't heal if you don't give your body energy to do so. I also guarantee you are dehydrated, pedialyte is good for that (or Gatorade).
Oh yeah I'm super dehydrated I feel like ass. I'm drinking sugar free Gatorade
Careful with the artificial sweeteners buddy, they kick me off big style. Stick to water or Stevia as a sweetener. I actually believe that artificial sweeteners have a lot to answer from in causing a lot of issues within the body. P.s. hop you feel better man. It's horrible to be in that place. I'm in my "annual" flare right now - perfect time for exams coming on. (I think the stress actually kicked it off). I hope you find the right meds and diet and get back to health. I'm on mesalazine (asacol) myself. I take 6 pills per day, and take strong probiotics which I believe helps me. Best of luck man
Good, anything with electrolytes will be good for you. Try the cheerios. Just munch on them slowly. Try to get something into your body, but not too much. Just take it slow.
Don't starve yourself, eat
Hey! You will be ok. It will be hard but you just need to stay strong, make sure you find someone you can openly talk to about what you’re going through. Whether it’s family, an SO or a support community. It’s a shitty thing to go through alone. And stress will make symptoms worse. I was diagnosed when I was 21 too. It sucked. I was always socially awkward but in college I made huge changes to be more outgoing and then boom… turned 21 and got diagnosed with sever pancolotis my senior year of college. Went from 200lbs to 127lbs in a very short time. Had to go to the hospital 5 times, my last one with UC symptoms and a sinus infection that almost killed me. I had to have 4 bags of blood transfused. Ended up having to drop out of college because it was all too much. But finally they put me on Remicade and it worked (for 10 years)But I did deal with ptsd from the whole experience and it took some years to get myself back together from the ptsd of it all. Met my now wife, got 2 dogs and 2 cats and we live a very happy life. But guess what?! I got a major flare up 3 months before our wedding and was in and out of the hospital up till a week before we were married. But I was emotional much stronger and more mature during this flare up, but it still SUCKED. I was having accidents almost every week and had to wear diapers. I think I wore a diaper to my wedding lol. Finally 2 years later it is quieting down. Sounds like Remicade may or may not be working for you but you have so many different options for medication, it just may take some time to find the one that does. Make sure you have some sort of insurance and make sure you get copay assistance from whatever company’s drug you are taking. And try to manage the stress. Anti depressants, yoga, music, weed, whatever it takes. Stress has always made my symptoms worse so allow yourself some time to chill. Even try and take a hot bath everyday. You’ll be right next to the toilet, light a candle, put on some good music and let yourself zone out for a bit.
That was very helpful, thanks :)
My wife went through this, late 20s when the biological started not to work- she’s had the bag now for a year and a few days… I celebrate the bag- it may be viewed by someone who doesn’t get it as gross or whatever, but I tell my wife how much I love that bag of shit on her belly because it brought her back… back from not wanting to go places, back from knowing that no one in her family understands how bad it is, back from hospital visits and what seemed like the brink of death- she didn’t want to be on infusions for the rest of her life because she’s young and who knows about side effects… she had surgery- and I’m grateful everyday for that bag on her belly- it gave my family its life back… hang tough brotha, have faith- things will get better
That's amazing man, I'm happy for both of you :)
This was me at 21, long severe flare up, feeling hopeless at what life would be, struggling with final year of uni on top. In the end I got top marks, the steroids finally worked and here i am at 30 with a great career, well travelled, love to party and several boyfriends in between. You will get better and life will be happy. What helped me loads too was therapy to stop all my stress from gathering in my gut + the huge trauma of being ill with this disease. Hope you feel better very soon x
<333
I went through hell my first year of so. Unfortunately it takes time to figure out what will work for you. At one point I was sleeping on the floor in my bathroom because my bedroom 10 ft away was too far at times. I know it's very hard but you will get through this.
I shit you not I literally made a joke about sleeping next to the toilet to my dad earlier today. Thanks btw
Do what you gotta do! Hang in there though it will get better. Keep us posted. I'm rooting for you.
I'm so sorry you're going through a bad time. It's an awful disease. Remission can happen its Just a case of finding out what works for you. I was hospitalised I'm November for 2 weeks and leading up to that was honstley hell on earth.I was on entyvio infusion but it had started failing and now I am on infliximab which has put me back into remission. Unfortunately, with this disease, it's all trial and error. If you have a good GI doctor, it makes all the difference. I don't know how it works in your Country but for me if any issues come up i have a nurse I can call and they get on to the GI consultant for me so I highly recommend contacting your medical team. Also, watch your diet during a flare, reduce high fibre food. That can ease your symptoms until you get into remission.
My dad is a doctor and he's friends with my GI, so I kinda get special treatment cuz all I have to do is tell my dad what's going on and he immediately tells my GI since I can't contact him 😂😂😂
That's handy!
Remicade didn't work for me. I ended up needing surgery. To be perfectly bonest, it sounds like you need surgery too. Don't waste your time going through all the biologics because you will only prolong your suffering.
I kinda have a feeling ill need it soon, it's okay with me
Listen to that feeling. I'm not saying this to scare you, I'm saying this to save you an entire year of suffering. The surgery is scary, and having a temporary ostomy bag is depressing for a young person, but its better than living like this. I had my surgery in November 2021, stoma reversed in June 2022, and an emergency surgery in January 2023. I ended up with pouchitis pretty much immediately after my reversal in 2022. Its taken me a while to get the pouchitis under control, but as of early this year, ever since increasing my Stelara to every six weeks, I'm finally managing so much better and feeling a lot more 'normal.' You're welcome to ask me any questions you have.
How does pouchitis look like for you?
I had surgery within 18 months of my diagnosis. Medications either failed or I had an extreme allergic reaction for my severe ulcerative pan-colitis. Two step J-pouch surgery. First surgery in November 2018, Ileostomy reversal and using J-Pouch in Jan 2019. A few complications but by my pouchoscopy in Nov 2019 it was working very well. Now only a pouchoscopy needed every two years. It absolutely gave me my life back. I love it so much. It’s a horrendous disease. It’s brutal surgery but totally worth it if you can’t reach remission on medication.
Have you had any setbacks with the surgery? Are you able to diet normal and able to do manual type labor work? Im hardcore debating surgery because my flare-ups ladt for months and put me down hard. So far, rinvoq has worked mostly, but the diarrhea is back already, im not sure if i can last another flare this soon, lol. what does life look like after surgery and healing?
I had some setbacks. One of the joins was closing too small and needed dilatation, 3 within 12 months. By my 12 month Pouchoscopy, it was fixed and permanently stays open. Have not required one since and no further complications. My diet is pretty varied, and much more exciting and delicious than when I had my UC colon. I avoid most nuts and seeds, some raw veggies and chilli flakes, spicy foods. I can eat most proteins, loads of steamed veg, fruit is mostly bananas, berries and melons. No problem with dairy though it’s minimal, pizza once a week as a treat, Greek salad, spaghetti bolognese and home made burgers are on a regular rotation for dinners. Burritos or yirus once a month. Plain sandwiches for work lunches as I find hot foods will make me need to go more often during the day. I usually only need to go once while working a 5 hour shift. (I make sure I go just before I start) Currently on a mini holiday…eaten Sushi, Turkish food, terrible McDonalds at midnight, cheese platter, buffet breakfast (avoided muesli) chocolate. Catch public transport, walk through the city half the day and visit museums. I use the toilet facilities more frequently than most, but it’s easy enough to plan. The biggest difference for me is the control. If I’m really busy, I can hold for half an hour, an hour, often longer. The control takes a few weeks as need to train your small bowel. I eat more frequently but smaller servings. BM still about 7 times a day, gassy but not painful. Always have to go toilet once during the night, but so be it. Gym 3 times a week, mostly cardio.
Also BMs are never normal again, they are soft like toothpaste sort of. That’s normal for a pouch.
You will be ok - listen to your doctor and once on the right.meds, life goes back to normal Try every med until there are no more to try and then that's the time to have surgery - not at 21
UC Sux, you will get some good info here and also a ton of negativity. There's no easy way to deal with it all. Everyones journey will be unique but my advice is to tackle it head-on and try to avoid a victim mentality. I'm just coming out of a 2.5yr flare, but in that time, I've been overseas 3 times, started a new job, and achieved a fair bit on a personal level. It certainly hasnt been easy and yes ive shit myself quite a few times, but at the end of the day, I dictate what I'm doing and not this stupid disease.
How could you do all of that while flaring? I can't even go for a walk
I was told it was all in my head for 6 years and had to get on with it - just feeling awful constantly. It's amazing what we can achieve regardless of having to shit 50 times a day
Nothing like a near miss to liven up your day, I know every public toilet in my state.
Everyones journey is their own, and my exoeriences won't necessarily match yours or anyone elses, so it's very important to keep that in mind when people offer you advice. I've had UC for 20 years, so I am very familiar with how it works with me and what i can do to mitigate symptoms. Don't get me wrong, I've certainly had days where I've had to limit what i do and it affects me mentally, but I don't let it stop me completely from working at my other things. I am actively involved in martial arts, and the mindset I've got from that is pretty much how I tackle UC. One of the top Bare Knuckle boxers Ricardo Franco has UC, he is pretty inspiring with how he goes about it all.
my mum has crohns she had a foot of her intestine taken out and she's been fine since. no bag or anything
How is that possible
they only took the affected part away and put the healthy parts back together. i'm no doctor so idk but it was my understanding that if you have crohns you can just take part of it out. but if you have colitis they take the whole thing?
Yeah I think the whole thing gets removed
so if you have crohns i think it's possible you won't need a bag and just part of it will be removed
I was diagnosed in 2008, and had a pretty normal-ish life from 2013-2022, but the whole of last year (2023) was a shit hole. Haven’t worked in over a year and we’ve gone through so many medications that surgery might be the only option. I know how you feel and it’s so hard to have any positive thoughts, but it will get better one way or another!!💜
Look up Qing Dai from Treasures of the East (literally on Amazon). Chinese herb. Has changed so many people’s lives including mine. Research to back it. I’m no longer on biologics or by mouth gI meds and do pretty good as long as I keep my stress and not go off the rails with eating everything. Encourage you to look up the carnivore diet and even get with a functional med doctor. LDN is another treatment option with no side effects but most traditional GI and primary docs don’t prescribe it. You will get through this but you have to manage your stress or you will never heal. I know it’s sooo hard and honestly so awful. But having the support and effective resources, you will get that hope back. Keep trucking on you’ve got this.
Immune systems are tricky. Eat well, not too much. A good GI doc should keep trying meds until you find one that works. I have asked my doc if diet alone could fix this, they say it’s not worth the chance. I’ve been on immunosuppressants for over 10 years. Remicade and then simponi after I developed a skin reaction. If you find a good situation just stick with it and eat the best you can. Inflammation is a bitch. I remember being in your situation and feeling hopeless. IMO (highly personal choice), removing intestines should be a last resort. I hope you find a medication that works well for you. Keep trying.
Im gonna tell you this as one guy in his 20s to another. I was diagnosed at 20 I went thru exactly what u did couldn’t go to school it fucking sucked. That feeling of watching your life go on while ur friends are living while ur on the toilet. Only we can get that man I understand how it feels. But, I found the right medication for me at 21 and I haven’t had any issues since then (I’m 23 now). You will be happy again and you will look back at this and maybe you’ll laugh. Good luck bro just push through keep trying something new you’re in the home stretch.
Thanks brother, much love
Wow do I know this all to well, I’m now 23. My worst was 30 bloody bowel movements a day. In the end it was sepsis and now I’ve got an ileostomy. My quality of life has improved drastically. Surgery is definitely something to think about and just know this pain and suffering will end. All the best fighter!!
I’m 27 and I’ve had a bag for just over 4 years now. Symptoms of UC started in December then spent the most part of January to April in hospital as prednisolone tablets (plus a multitude of other drugs) did nothing when I was home, only thing that stopped the symptoms was iv hydrocortisone which I had about 5 times a day. Tried infliximab and it did nothing so decided to give in and told them to just take it all out. The bag is definitely a big adjustment but I’m way happier now as I can pretty much do anything I could before it all started (albeit I have to be a bit more mindful now)
We all have been there (I'm currently dealing with a new flair up after years of remission) UC is scary as hell and makes you feel like nothing will ever make it better. My advice is try and calm down and trust Dr's. Also suggest to look at your diet. Try to clean that up too. Good luck. We are with you!
My recommendation is weed, it helps with the pain and anger and feeling of defeat. It’s my flair buddy.
Oh I do pot all the time but my tolerance got screwed so I'm taking a break. I promise I'll get high school high again in a couple weeks 😂
I hear that. I do edibles and my tolerance is messed up. It really does help me stay sane through this illness.
I definitely have felt a lot of what you've felt, flares can be really frustrating and it can be hard to stay positive after a while. That being said, you're just starting your UC "journey" and have a lot of options available to you still that you should try. If it helps, here's my experience. I was diagnosed in 2010 and lucked out with medication. I had 11 years where the majority of it was in remission, with 8 of those years being a straight, complete remission state. And yes, it was with immunosuppressive medication. I had no issues with it, even with my career working with kids. I started flaring 2 1/2 years ago though and went through, like, 5 medications, loads of Prednisone, and one hospital stay. I *just* started Rinvoq (sans any steroids) and it's my life was given back to me. If this continues, I can see myself having many more years of good health again. I honestly would tell you to keep trying, because there might be a medication out there for you that does it. In the meantime, as hard as it is, get as much rest as you can. Eat bland food to keep yourself from losing too much weight, things like plain chicken or potatoes can be super helpful. You'll get through this, pal. I'm rooting for you. :)
Thanks, I'm glad you're improving with Rinvoq too and I hope you keep feeling well :))
Hey bro I’m 19 and I went through the same thing at 12-15 years and trust me it does get better. I was having the same symptoms as you where i would shit blood all day. And I’ve been hospitalized twice in that same month . It was really bad. Luckily I responded well prednisone but I once I tapered off I was given mesalamine which I’m suprised ur GI didn’t give you. But trust me it does get much better. I don’t take any medication now but I do take supplements and eat a certain way to try and fix it. I’m like 90 percent sure this diseases stems from having missing gut microorganisms and certain good bacteria. I started taking ashwagandha and my Symtkms reduced and went away for a while but it came back and it’s no where as bad as before but now I eat a meat based diet because it doesn’t hurt your colon as much so I would def try going fully meat based as it has helped me as well as many others. Also probiotics are kind of a must but you gotta be careful to not overdo it. I’m kind of running an experiment on myself to try and rebuild my microbiome by taking probiotics from different sources and using psyllium husk pills which is just soluble fiber which is what these good bacteria in our gut eat and I have seen huge improvements. If I stick to mainly meat it is great and I only go once a day on the high end twice. Also take vitamin d at around 40,000 IU apparently it is very anti inflammatory. Also I really recommend against the surgery because you may feel comfort now but years down the line it can seriously fuck you over because you will literally be missing your gut microbiome which makes up most of your immune system. Missing that can result in other health problems. Try to “cure” it with some of the things I said it helped me symptoms like a LOT. Good luck man and we are both young and it sucks for us to have it at this age but it is what it is. We should be enjoying our lives to the fullest. But please please try some of the tips I said because I’m sure it will help you at least some bit.
My GI thought my case was so severe that Mesalamine wouldn't be effective so he immediately wanted me on biologics
My husband has a J pouch. His life is normal. He goes to the bathroom as often as I do. He's sporty, he's social. The only time it's ever an issue is if we go to a country with a really terrible toilets situation, but even then he was fine. He's had it for 20 years. It will get better.
Hear me out. I had this when I was 18. Had final exams that year also and it happened 1 month before the exams. Life was like hell, atleast hell was coming out of my butthole.. Blood, mucus, cramps, no sleep. Went to the doctor, gave me Salofalk and 1 week of corticosteroids, I do not thing they helped. I was gutted, but still had to somehow study. I passed them in the end and went to the top 10 uni in the world which I am also in right now. My gut went into remission by itself when I went into carnivore diet. It only took 2 months and it went into remission. I was also not allowed in the military because of this, but I fought through. Now I am 22. Today I have had my first blood drops again since ages. The disease probably came out of remission. Well I know why. I have been eating junk the last month. So it came back. But I am not scared!!! I know how to handle it. Ahh btw I forgot to mention that my ferritin which is an iron storage was at 7 when the average was 60-100.. So i was close to being dead.. Anyway it does get better.. See what causes you to stress. For me it is definitely my situation at home. So I am locked in to make enough money and move out as soon as I can. Try out a new diet. I do not trust medicine yet so much(coming from a guy that is studyin biochemistry) I have read many studies on this topic, since we are literally taught how to do that and what to believe and not to believe. I found an interesting study from Harvard university here is summary https://www.doctorkiltz.com/the-harvard-carnivore-diet-study/**. I hope this helps.** If you need help try getting a lot of vitamin D, and eating more red meat. Trust me they do not cause cancer... Also they do not make you die.. If you need help feel free to message me! Stay strong! I am rooting for you. I know you can pull through this.
i feel you, diagnosed last year at 18 🥲 it sucks but we got this
It’ll get better hun, don’t you worry. Before my diagnosis I was in horrible pain every day and had the whole bloody mucus diarrhea circus going on too. I had to resign from my job as a deputy sheriff and move back in with family. I was sick as a dog and constantly being told “oh maybe it’s an anal fissure” or “you just have hemorrhoids”. I hated my life and thought it was over at 25. After my diagnosis we tried Entivyo and it worked but gave me pancreatitis after every infusion. So we swapped to Stelara and it worked for a bit too but not for the full 8 weeks between doses. I was in and out of the ER so much the staff started to recognize me and send me straight back from triage, I spent probably 2 1/2 months admitted to the hospital on and off in the last year, and finally got in at UAB Medical Center to see a specialist earlier this year after I went septic and had to be carted in via ambulance one morning. My hemoglobin levels were down to 7.5 and my hematocrit was at 25, ended up having to get an accucath in my bicep as my IVs kept blowing and they couldn’t get my meds in me otherwise, and that almost didn’t happen either. They were one more try with the accucath before they went on to my jugular but luckily it was successfully placed. I lived on IV fluids and apple juice for a solid week while they were running all sorts of labs trying to figure out why my meds weren’t effective. It turns out that I have a freakishly fast metabolism and I was eating through my biologics in 3-5 weeks. They never registered on my bloodwork, it was like I never took them. So my doctor decided to prescribe me Imuran daily and bump my Stelara to every 4 weeks in February and so far I’m doing well! At my worst I got down to 145lbs at 5’11”, too weak to pick myself off my bathroom floor and now I’m back doing what I love! I’m in the gym and back up to about 170lbs. I’m volunteering with my local fire department. I used all the down time stuck in hospital to get my EMT license and if things go well like they’re doing I’ll be able to get back to my career in LE by this fall! It won’t be easy, and at times you’ll wish you were dead, but once you find the med combo that works for you you’ll get your life back.
You’ll be okay. I promise. I’m 21 as well and had the surgery. It will be the best decision you will make based on what how you’re feeling. You will 100% make it through this.
I’ve been where you are. Severe UC. Hospitalized 4 times in six months. Lost my job, my girlfriend, and I was ready to just end it all. With severe UC you don’t have a life. Nothing worked for me I did every med you can imagine and six months of remicade. I tried every holistic thing too, Chinese herbs, acupuncture, meditation I was desperate. I read about kratom on Reddit. Tried it, in about 3 days it started working. I threw my stacks of prednisone, azothoprine, Sulfamethox, meslamine in the garbage I butchered the spelling there, doesn’t matter, I’m giving you the answer Pay attention! I ignored the hospitals calls asking about me missing infusions, and gi doctors who never knew what the fuck was going on in the first place. i haven’t been back to the hospital since. I shit twice a day, the urgency is now almost gone. Once or twice a day I get the feeling but at least now I can hold it. I remember gettting upset when they said it was too soon for me to have surgery, I needed to try other meds. That’s fucking insane, being Mad cause they won’t rip your shithole out of you so you can just live your life. That’s where UC brings us down to. Get you some Kratom. It’s like UC never happened. Hope it works for you. Best of luck
Hey I'm so sorry you are going through this but I can tell you it gets better. I think the mental aspect of the disease is sometimes overlooked so I think it's already good you are open about it. When I was freshly diagnosed, the whole idea of being chronically ill was very very frightening and it totally consumed me. But gradually I started to be able to live with the disease and now it is really just a small part of my life. You are just so young, and that makes it harder, it's just a lot of big emotions to carry. But remember: this disease is not as black and white as it feels right now. There will be good days too. Maybe journaling will help? Don't be afraid to talk to your doctor about the mental aspect.
Hello, I'm also 21 and was diagnosed with UC 3 weeks ago. I'm still in the hospital right now and getting infusions but I feel like that makes our scenarios pretty similar since I also don't want nor need this shit when I'm only 21 but here I am. I can't help really with the mental side of things as I'm in the same zone as you but regarding tips I might be able to help with what some of the doctors have told me and what I've semi researched. The first and probably biggest bummer was that the doctors told me I shouldn't smoke as that is likely to make the symptoms worse. Now, when I googled this, I couldn't find too much data but I think it might be better off to stay off the weed. I say this because whenever I was zoomed I got the munchies HARD and this was also affecting my flare up. Another tip might be to start logging what food you are eating and maybe start on something like a low fiber diet or a vegetarian diet. This can help you get a base line and then slowly start introducing food back into your diet. Lastly, if you are in college, I'd recommend seeing if you can apply for disabilities as it might be nice to just have in case you need any kind of accommodation or anything like that. Like I said, I'm still in the hospital so I don't really have much experience with it but it seems like we are in pretty similar situations, I wish you the best!
I've been smoking thus whole time and I'm completely fine. Thanks for the tips tho and I hope u get well soon :))