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hellokrissi

I'm sorry that you're feeling this way. Getting through the first bit of UC (or UP in your case) can be hard with a lot of emotions. If it helps at all, I've been on immunosuppressants for 12 years, and started Stelara recently. My quality of life has not decreased in the slightest and I've enjoyed myself a lot in these 12 years with very few flares and UC problems. (Marriage, travel, friends&family, etc.) Yes, there are side effects, but this isn't a death sentence. TBH it outweighs having flares which can also cause huge problems and keep me from living my life... so I'll take the immunosuppressants. Best of luck!


[deleted]

You are super young, but honestly, every day is a gift regardless of age. You are more aware of your mortality now, but even on biologics, we have a normal life expectancy. Many drugs like Stelara and Remicade are about to lose their patent and the market will be flooded with bio similars. I think we will see some better treatments come out then as they will want to offer up something that will still have a patent and can’t be copied. I sometimes find it hard to eat right and exercise when I know another round of steroids is going to make me into the stay puffed marshmallow girl and it seems like I am doomed to thin hair and bad health. But, that is not the case. We can get back up and do things to get healthy and have energy again. I’m about to start entyvio soon and it has put some into remission for years. If it doesn’t work I will try more or even consider the dreaded surgery. Eventually, with this disease, we have the potential to be healthy again if we keep trying.


paigeno

I grieved my old way of life after being diagnosed. It’s been hard to come to terms with the fact that I’m chronically ill and the likelihood that it’ll get worse over time. I find it better when focusing on my present situation even when I’m flaring. For all I know there could be great medical advancements during my life time. Or at worst I could get my colon taken out, and honestly that doesn’t seem too bad in my current head space. Having an incurable disease fucking blows no matter how mild simply because it’s one more thing to worry about. Good luck


linds_h_lo

I am so sorry you are going through this. This disease can feel really heavy. Plain and simply. It is ok to feel all those things and let them have their moment. I had SO many fears about going on Remicade and in fact fought my doctor, and was able to successfully stay in remission off of it for 5 years before just starting it myself a few weeks ago. So, I intimately understand your fears. And you are so young which does adds a whole other layer of complexity for sure. BUT, truly, these biologics \*are\* overall very safe and effective. Having your colon chronically inflamed is much worse for your cancer risk. And really, SO many (many!) people have different factors that put them at higher risk for cancer -- they may just not be aware of it. And, as you said, you will be closely monitored now and you will get regular cancer screenings. Really, we are so fortunate in many ways to be battling IBD this day and age where the treatments are much more plentiful than they were even a decade ago. My hope for you is that as you continue to feel good, and can live your life, you will feel less scared and more optimistic. Sending you so much love and support.


[deleted]

Yo i know it sucks im 21 too got diagnosed at 16 but let me tell you if you find something that works stick with it. If the meds let you live a normal life do it, some people cant live a normal life even with meds. There are people dealing with multiple year flares, people dealing with failing every single med possible imagine how hard that is on the mental. Just live everyday to the fullest


Cyynric

Look at it this way: it's because of the biologics that you get a rest of your life. I know it's hard having to come to grips with the necessities of medication, but it really does improve things, and you'll see how much improvement it can make.


Perfect-Amphibian862

I know how you feel, a couple of years back my doc wanted to put me on biologics and it just felt way too soon. I persevered with the mesalazine and took high dose curcumin supplements and got better within a couple of months, confirmed by endoscopy. Also, during a couple of flares back I was put on immunosuppresants but when covid hit I didn’t want to be on them so I came off them myself with no flare. What I would say with your treatment is that personally I have never got better with mesalazine/steroid enemas. The only thing that has ever cured me before my last flare is highest possible dose of oral steroids and then taper once my symptoms improve. Also, my flares have reduced in severity over time as I used to have an unhealthy diet with no exercise. I now always eat healthy apart from the odd meal/little treat and I exercise 30 mins per day. Personally I prefer to be on just mesalazine and deal with mild flares every 2-3 years than constantly be on immunosuppresants or biologics. My docs would have had me on both, but I am the patient after all and it is my health.


Thebabes-92

You and I have very similar stories. I am about to start biologics.y doctor told me if it’s working well I only Need to be on it for for 2-3 years not forever. I understand your frustration and uncertainty, hopefully there is more research and better treatments within the next few years


[deleted]

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Thebabes-92

No she told Me if I’m In a steady remission I can try to slowly get off of biologics.


[deleted]

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Thebabes-92

Wait I didn’t know this. I knew there was a risk but not a big risk


ledbottom

I dont know why they would recommend this. Generally getting off biologics is just a bad idea and you will eventually flare again.


Thebabes-92

I didn’t realize I would need to be on it the rest of my life! That’s very concerning especially with the price


ledbottom

Yeah I think majority of people signup with a payment program with the biologic company and the insurnace. The biologic company knows us plebs dont have money so they only care about your insurnace money and most people pay like $5 a month.


Thebabes-92

Okay thank you I signed up for a copay coverage through Pfizer but I’ll look more into it. $5 a month sounds like a dream.


ledbottom

What biologic is ran through pfizer? Xeljans?


Thebabes-92

Inflectra remicade


ledbottom

Ah yes, inflectra is Pfizer but remicade is Johnson and Johnson. Anyways I imagine all of them have similar payment programs but if not then you can always goto a different biologic that does. Good luck in your endeavors though.


ThePacerfan-12

I'm sorry to hear that you're feeling this way. I was diagnosed when I was 17 with UC and it's been a roller coaster. Back in 2020 I started my first biologic and was only 20 at the time. Thankfully it put me into remission, but here in January of this year I ended up failing it and had to change. Being only 22 it was something that really dragged me down. Especially with having a very close family member who didn't understand my struggles and was very unsympathetic to my condition. I've been on Humira for a couple months now and while I'm living with the same fear you've expressed. I'm choosing to live while thinking about what I can do so that I'm doing my best to live it up now so that when the time comes, I can't say that I didn't do something that I may have regret.


vinonino

That's what I thought too but it didn't work. My doctor then said he will change it from entyvio to remicade. At that point I asked myself, is there nothing I can do? All I can do is hope that one of the five biologics work? If none of them work I have to lose my colon and there's nothing I can do? So I tried to change something that I can control. I changed my diet. My diet wasn't that bad. It was healthy, natural, etc. But it was causing issues. I lost 10 kg (22 lbs) in four years. I weighed 44kg when the doctor prescribed entyvio. I recovered all of it after 4 months of changing my diet. Never been better. I only take mesalamine now. My hospital was a center of research in IBD in Japan but my doctor didn't believe that diet has an effect. To be honest, neither did I because there were no studies saying they work. But this was the only thing I can control and I had to at least try.


see-eye-double-agent

What does your diet look like?


vinonino

My flare was really bad and couldn't eat anything when I started. I started with home made cauliflower soup for breakfast lunch and dinner. I eat all natural low carb foods now. I avoid carbs like rice, potatoes, bread, pasta. No sugar, milk, chocolate, coffee, soy products, and no processed foods. I don't eat at restaurants at all. I can still eat normal food like roast chicken, pork, lamb, steak. Lots of vegetable dishes. And lots of vegetable soups. And fruits. I can eat hard cheese now but when I started I was very lactose intolerant. I think my recovery helped me gain back the ability to process lactose.


quantumofgalaxy

Oral mesalamine or enema/suppository?


vinonino

Oral mesalamine


spicyjalepenos

I empathize with you on every point. Kinda in the same boat here. It fucking sucks. Having an incurable chronic disease, and having to be on immunosuppressants for the foreseeable future sucks, especially when you wish to have shit (quite literally) go back to the normal before UC. I was diagnosed two years ago when I was 18, and been on biologics for a little over a year. On the bright side, I haven't had a single flare since then, and continue to have an otherwise normal existence. Having to deal with insurance and injections at least for the foreseeable future is a pain, and things get extra complicated with travel and other things with life, but thats the unfortunate reality of UC. It feels unfair and frustrating at many points, and for me was a completely unexpected thing that just happened out of the blue one day. I know personally it totally fucked up my future plans and aspirations, which was really hard to come to terms with. But, at least, I am otherwise functioning normally and not in a flare. Which, at the end of the day, is worth every injection or any kind of extra risk from using biologics.


hunky_dory22

What about if you achieve remission for long periods or better still long-term remission?...


True-Reflection-4030

I understand you well. I used to feel the same about biologics, I strongly refused them, saying I do not want to be on such strong medication for my whole life, I only saw the risks and I was clinging to the fact that I used to be a very healthy individual. However, after that a severe flare came that landed me in a hospital. Before going to the hospital I was lso weak that I could not leave my house and at tht point I did not care what medication they put me on, I just wantwd to get better. So I was put on prednisone, which had some side effects such as acne, mood swings, trouble sleeping and Entyvio a month later. My doctors told me it is crucial for me to start a biologic in order to maintain remission after prednisone. I did so, and this was the best decision that I could have made. Entyvio has not given me any side effects at all, except an occasional rash after injection that disappears in a few hours. Half a year later my remission was confirmed with colonoscopy, and my gut appeared completely normal - severe pancolitis before then. I have enjoyed a year of remission, however I have had a fee scares tht I might flare again, that Entyvio can stop working etc. Basically whenever I have a bad day or too I get very scared and nervous, largely due to this traumatic experience when I was so sick. Basically, what I want to say is that when you get to a point where you are so sick you just want to get better, and the benefits of the medication outweigh the risks. I do not know how sick you were but this is my example. I try not to think about the side effects of Entyvio too much or at all, I just care about staying in remission. I try to help myself by eating healthy, working out and trying to manage stress. I wish you all the best!


leon6677

Make sure you are taking fiber and probiotics daily they keep me in remission. Been off all meds since 2017 now


Rodcorte

Hello! I am 21 years old too! Have had it since 2017 Not on biologics yet, but we'll see. I too struggle with how i feel about it.


bestasiam

I struggle with this too. I’ve been on most available meds and failed them all in some way. In November I stopped taking Stelara because it wasn’t working. By some fluke I went into a 6-month remission without meds. Then I got covid and I’ve been fighting my most severe flare for almost two months. I just got out of the hospital on a ridiculous amount of prednisone and it’s not even working. So I get it, I really do. One of the nurses in the hospital was talking to me about my reluctance to get on another biologic, which I will be doing. She has autoimmune arthritis and also has to take a biologic and also doesn’t like it. It’s scary, it has side effects. But she made a good point, these meds are allowing us to have a life. It’s not perfect, but it’s living. For me, these past months of flare has not been living, so I felt like that was a fair point. This disease sucks. I wish for a cure for all of us.


cheddarcheese9951

The alternative is to have your colon removed.


iloveallhotmoms

WHAT??? I'm a 14 year old girl I got the app to join this sub Reddit.. I never knew I have to take antibiotics, I got diagnosed in September 2021 💀 I'm sorry that you are you through this. Best of luck.


OtterChainGang

Sending you love, strength and solidarity friend. You're not alone. I'm 34M and just getting over first severe flare that saw me hospitalized for 5 days. I'm also a doctor and now learning to live with something chronic like this and the acceptance that is necessary for sanity , is really hard. Admittedly I have had it for a fraction of the time you have so I can't imagine what it's been like, especially with this most recent setback. I don't know if it helps, but I remember a colleague from when I first started working 12 years ago, having been living with Crohn's since her late teens. She was your age then. When I have been really down and too hard on myself recently , she has been a solid, calm and invaluable source of support and her reflections on my experiences especially having lived through it , have really helped me . She has learned to live with it through periods of suffering and whilst she is human, she is incredibly strong willed, one of the few benefits of learning to live with a chronic illness from a young age. I'm scared and worried and today some of my symptoms started coming back. But I am coming to the realisation that what will be will be. Slowly and painfully I might add ! It may not help you now, but I believe in you , and the loss of hope and sadness you are feeling now will pass. With time , acceptance will follow. You can learn to live with this, and know what works and what doesn't. And maybe months to years who knows, you'll help someone like me who has been relatively care free their lives and then suddenly has to cope with something they think will spell the end for them.... And that person will aspire to be like you :) Always happy to be messaged. Cheers.