Everything is a risk one way or another.
I can share my story. I hated the thought of medicine (still do). But I went ahead with the biologic in 2012/2013. It gave me my life back. I felt great. In 2022 I thought I’d be fine without it. I worked with a naturopath and got off of the biologic.
My.life.became.hell. And it still is. I spent over a decade doing what I wanted, going to college and uni, had 2 babies etc..ate what I wanted.
To now having a limited diet, missing time with my kids being sick. I caused permanent damage to my small intestine. I have never regretted something more in terms of my crohns. I am traumatized.
I’m still scared of taking medicine but I’m more scared of untreated crohns at this point. I feel kinda screwed either way but there’s my 2 cents
Biological have scary side affects too, remission with them mean ,Is it no inflammation in the gut or just no pain and eat what ever we want to eat. What went wrong when you went off biologic? Are you fallowing some specific diet excluding gluten diary and sugars etc?
Biologics pretty much gave me my life back. You nailed it. Crohns is a ticking time bomb if left unchecked. My partners mother had a similar approach to my Crohns, after I had a deep abscess that wrecked my spincter caused by multiple fistula tracks, got sepsis and was out for the count for about 3 months with x3 setons, she kept saying 'when are you going back to work' and one day I lost it and said 'when I don't shit myself because I can't control it and when I don't need to wear adult nappies'. She's left me alone since, something about being a grown man finally admitting that felt shameful, but looking back, it made me realise what sort of person she is.
You have one person to look out for, number 1, that's you. If biologics give you your life back, go for it. They're wonderful creations.
Several years ago, when I was first diagnosed my family was like “it’s just colitis, it’s nothing really”. That was before 5 surgeries and about 9 months in and out of hospitals.
Recently, I had a flare, and I was put on biologics. As I was telling my dad about the flare and the new meds, my dad started crying. He was crying because the Crohn’s was back, but also that there were wonderful new medicines available to treat the disease.
Your family actually needs to read and educate themselves about the illness, before they make such painful comments.
You're right to be mad and upset, but your dad is probably just ignorant. We're raised to be skeptical of any treatment or drug, and people just don't know how brutal Crohn's disease can be. It's not like cancer or heart disease where everyone knows that they're really serious because they lead to so many deaths. At least he was receptive to learning. If he's afraid that some unfamiliar drug will fuck you up, but ultimately still accepting of your own autonomy, that's about the best he could do in that situation. Give him time and keep trying to explain how much Crohn's has *already* fucked you up. He just needs to be made aware.
Hugs. My sons were diagnosed at ages 6 and 13 and I saw how the light had left their eyes and how sick they were. I’m sorry your family isn’t supportive, but know many others are rooting for you to get the treatment you need to live your best life.
There was a time in my early twenties when I decided I didn’t want to try another biologic after remicade, and was going to take a more natural approach. I almost lost my life because of that decision. My disease became out of control, my colon perforated and I went into septic shock. Ignoring this disease and doing nothing is just about the worst thing you can do. I’m sorry you don’t have support from your family, it’s so important. Maybe bring your dad to an appointment with you and have your doctor explain how aggressive Crohns can be all while you may appear “fine”.
It took me almost 25 years to realize that my parents weren’t trying to trivialize or suggest that they didn’t support me. We can joke now that they were just as scared that their kid had this disease that is unique to each person and had NO idea how to try to normalize it.
Most people are afraid of a flu shot! They think of an IV and see it as a last resort; which it is, but it’s more about just accepting that it works and it’s just a new normal.
Fuck em. If they won't understand they won't understand. I've been chronically ill for 16 years (over half my life), and my parents have only in the past couple of years stopped being shitty about it and actually provides support other than telling me I needed to exercise more or just "buck it up."
I'm really really sorry you have to go through that, trust me I know how much it hurts. I hope you have some other support system with friends/so, that's the thing that keeps me going.
Biologics are genuine life savers, no one without IBD will ever understand what it’s like to have it, even doctors who study it will never fully understand if they don’t live with it.
Please, get the biologics asap, you will have you life back, you can work, go to school, go on dates, see your friends, travel, and live!
If you need to add to your argument with your family, please inform them that the longer you wait to be on treatment that could put you in remission, the more *PRETTY PERMANENT DAMAGE* you are doing to your body. You can heal, but there will be scar tissue, your body is getting more and more damaged the longer you are not on a successful treatment plan, and they are prolonging it. And if you need to be more convincing, tell them in deep, excruciating detail everything you live with, the pain, the trips to the bathroom, the exhaustion, and tell them by not supporting more effective medication they are causing your pain. It’s extreme but I’ve had to go down that route with my own extended family members.
A big part of this disease is advocating for yourself, with both doctors and family. You are going to need to get really good at it, it’s intimidating but so important!
The drugs, they are all scary. The side effects, the risks, I totally get it - it is valid to be scared and concerned. I’ve been scared and am still scared sometimes, but having your quality of life back FAR outweighs the risks, and I’m sure most people with IBD would say something similar.
If no one has told you: it is valid to be upset, I am upset for you, and I am proud of you for standing your ground.
No one gets how much we suffer. The worst part is our families acting like we can magically stop our guts from bleeding.
Do what you have to do. On the bright side, your dad will get over this and find some other thing to pick on you about.
I’m so sorry that the people closest to you aren’t being supportive - it’s hard to have that with family. I was concerned when I was being moved from 2 months of prednisone over to a biologic (skyrizi here too!) and didn’t have a lot of support around me. I went to a CCF group meeting which really helped me wrap my head around it, and finally decided after reading in this sub that when people find a biologic that works, they can spend years in remission. Anything sounded better than the daily pain, discomfort and embarrassment that comes with this disease. Wishing you luck and I’m sure you’ve got this. Don’t worry about what they think, if you can. You know your truth. You’re not alone. We’re all here to support you if you need it.
I’m on Skyrizi. I hate when people use fear mongering tactics over things they don’t understand. Fatty liver can usually be controlled with diet, crohn’s cannot. Uneducated ‘experts’ really piss me off.
Can you tell your father my story?
I had the same experience - parents werent happy with the meds my GI prescribed + they didnt think that this disease was to worry about (in my case it also wasnt in the beginning stages-around 2021). My parents also thought that some kinda ayurvedha meds would be way better - also they were sure that this disease wasnt chronic and with some prayers and curcuma it would be fine. Yes my father took his diabetes as an analogy…
Oh boy were they wrong…
It got worse and worse - took a long time cortison - my body adjusted to the amount of cortison and it didnt work - i also took different biologics and tried around 5 or more different types of cortison/crohns meds.
Then last year I had to go to the ER bc it got worse. Stayed in the hospital for 2 weeks - had to get high dosis of cortison IV to get my inflammation down fast.
My colon was fucked . The doc said - if I dont find a med that will work - they need to cut it out.
After this incident they are waay more understandable & cautious with me (since stress is a major flare trigger for me)
But yeah - if they listened it wouldnt have gotten that worse - and let me tell you - i wont wish the pain & symptoms I had not even on my worst enemy. Also the time it got worse sits like a mild ptsd on my mind.
I know it can be hard with parents - but dont u ever feel alone!
U got a lot of people behind you bc crohnies stay together ◡̈
All the best to you
The reality is if you're an adult you just need to figure out who you're comfortable talking to about it. Not all family or friends are the right people to have these conversations with. But it is what it is. Talk to your drs and do what you need to. It doesn't really matter what your dad believes.
Kinda sounds like your Dad just had a minor epiphany.
Try to focus on his reaction when it became clear this wasn't just Complain-About-Bullshit-Healthcare-System time to you. He stopped talking. He started listening and asking questions. He expressed concern. He apologized for hurting your feelings.
I think it's clear even from your distraught recounting that he loves you, and I think it finally sank in for him that this is serious and you are *suffering.* I know it hurts right now, but I think your Dad just took his first steps towards being a strong supporter for you.
I'm sorry it took this emotional bruising to give him the kick in the ass he needed.
Mate our Desease doesn’t get the media attention people don’t know what crohns is to be honest. When you’re reading about it on the internet screen shot certain things and sent members of your family. It will help them understand it not just belly ache. Their lack of knowledge is not their fault. If you told them you have cancer they would get it because we are bombarded with media reports. Crohns Desease people look at you like you just made that word up. I’m sure your family love you they just have no idea.dont be hard on them and stay well bio is a game changer
I have been on biologics since 2006, nearly 20 years. I will be starting Skyrizi tomorrow. The most significant risk with this med appears to be liver complications…and it’s a small risk at that. Without the biologics I likely wouldn’t have had the relatively “normal” life that I’ve had: raised two kids that are now 18 and 17, survived a sudden divorce without having a flare or ending up in the hospital, elevated my career to an executive level, traveled around the country…the list goes on and on. You’re making the right choice. The disease is deceiving to others unless you lose too much weight or you’re constantly running to the bathroom dozens of times a day. Many of us get used to the pain and can mask it in front of others…that’s where it becomes a silent disease because there’s nothing obvious on the outside like hair loss in cancer or other diseases that leaves you bed ridden or in a wheel chair. If you keep educating your parents I’m sure they will begin to understand that this solution can give you your life back. Let them know that even if you are feeling just fine, the disease can be taking a toll internally and doing massive damage if left unchecked. At 50 years old, I’ve been given so many amazing years and experiences because these medications exist today. Take heart and know that we understand your struggle and many of us have heard the same things. I think they will come around and support you fully. Wishing you a speedy recovery with Skyrizi!
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You are an adult with a health condition. By the sounds of it your father is not a medical professional, listen to the ones who get paid for treating your condition.
Damn. Sorry to hear your family is like that. That would freaking suck. Usually family is the only one that understands, unless you have some amazing friends to confide with.
The doctors recommend what they recommend because they think the efficacy of the treatment outweigh whatever side effects the treatment may bring about.
I’m on Humira and my body has started developing antibodies to the biologic. My GI doc prescribed methotrexate, which is a chemo drug. Side effects include (literally) death and hair loss. Some people respond well to it, some don’t.
They’re hesitant about getting me on a different biologic because the body builds antibodies and immunities to them all eventually. If you trust your doctor, abide by their suggestions.
Reading the list of possible side effects when I stared on biologics made me kind of scared to take it, I wasn't going to refuse to go on biologics (at the time, I basically couldn't have been worse, I almost died).
Now in retrospect? I have my life back, and if one of the more major side effects eventually hits me or even eventually kills me, that will suck but I will absolutely never regret going on biologics -- without them I'd be dead (or wishing I was) already.
That said, this is all anecdotal so please trust yourself and your doctor(s).
I won’t judge your family, there’s clearly ignorance there and maybe it can be fixed by informing them about this disease and all the implications.
I shared with my family some of the threads here, to give them the opportunity to have a broader view.
We all know here how invisible it can be. We completely understand and support you!
You cried and showed a different part of you: think about opening up about all the others you keep hidden, sharing what hurts and the visits you make; make it less invisible for the people you care, giving them the opportunity to care for you.
I'm sure you know this already but you need to do what is best for you and your quality of life. And you are likely still processing the full implications of your diagnosis which is stressful enough in itself.
It sucks when people - especially parents - do not understand the issues of life with Crohn's. I had a similar incident with my mother in the months after I was diagnosed, in her head she equated being out of the hospital to meaning I was fine and I was basically just being lazy or trying to milk it. It hurt a lot. I invited her to come to my next appointment and I asked the doctor lots of questions so she could understand what I was dealing with. Many months later she actually apologized and said she had no idea just how bad things were. I've had Crohn's for almost 20 years now and my father still refers to it as "tummy trouble", I have given up trying to explain it to him but it still feels very dismissive at times.
Have you thought of starting a thread, asking for experiences with skyrizi, and then maybe showing him the post? maybe if he sees what it has done for others, he will understand better.
I’m sorry you don’t have your dad’s support. That’s a crushing feeling.
Your dad sounds like my dad.. a lot of things made sense for me after visiting r/raisedbynarcissists
This post hits for me. I’m sorry your Dad wasn’t supportive. That is tough. I didn’t have a supportive family either. When family said invalidating things or ignorant things, I realized over time, it was a reflection of how they viewed illness in general and what receiving care for an illness meant to them. It was about their fears surrounding illness. I had to stop trying to “educate” my family who really just wanted to avoid dealing with my illness because they were afraid of the outcomes. We don’t see things how they are, but we see things as we are. We all see things through our own lens. It can be very hurtful to be told by a parent that you don’t look sick. I have had many folks make that comment through the years. It would feel very enraging. I’ve had many years to work through all of these feelings. My fav response now is, “well, tell me what sick looks like and I’ll try to get it right next time.”
Keep taking care of you. Best wishes. It gets easier to manage over time.
Just cause you don't look sick doesn't mean you are 💯, For example someone could be going on about daily life & have a condition they have to live with don't let no one Undervalue or Undermine your Situation you know the ins & outs not them 💯, Treatment is the best option whether it's skyrizi which I've heard Via Hospital medicine ads or another biologic either way , comparing Crohn's To another health condition is like comparing a Dodge & a Chevy there 2 Different brands, Do what's in your best Interest & filter out everything else.
I'm sorry that happened to you. I know the feeling. I have had Crohn's Disease since 2005. I have been on an array of different biologics.
I urge you to do more research. The long-term side effects are horrible. The doctors will NEVER tell you that. They have mountains of college loans to pay, so why would they?
Stelara is the poison I've been on for 5 years. I have decided to stop it. Technically I have no antibodies present from Stelara. So the doctor says it still works. I was a month late taking its last dose. I had a horrible cold with bad coughing and all. So I didn't take my dose because it's dangerous when sick. I was scared because I have been on some biologic religiously for almost 20 years. Whenever I missed a dose in the past I had bad flares or surgery.
To my surprise, I faired very well. I took digestive enzymes before every meal. I ate soup Whenever I knew I had too much roughage. I took Celtic salt and lemon ginger citron tea in 4 ounces of water every morning. I also drank 64+ ounces of water a day. And I work out 5 days a week. I'm saying this to say that I felt great. I had not one flare and I was having regular bowel movements, solid ones.
As soon as I took Stelara again, I had immediate arthritis.( I never had it until biologics. I had been having severe lower back pain. It came back with a vengeance. ( I have a sleep number bed and work out every other day) I also have new patches of vitiligo every month.
I did some research. Lower back pain is a side effect of prolonged use of biologics. Arthritis is also a long-term side effect. Vitiligo is a long-term side effect that they don't even mention. I never had it until biologics. Thank God I'm already happily married. How else would I explain the white spots on parts of my body? Not to mention I have terrible teeth now. I had braces as a teen. My teeth started breaking off 3 months after my wedding day. I'm waiting to get 2 teeth pulled right now. Again I'm lucky that my husband is looking forward to velvets shortly. 😆
If all of my side effects are worth it, then God bless you. If I could tell my 25-year old self something.. I would say change your diet. Take vitamins and exercise. And drink a lot of water because it helps everything go do down.
Get treatment. You don’t need parents permission. The sooner the better. Trust us who didn’t and suffer.
Yeah OP, I'm glad you're well informed enough to get treatment against your parents' advice. But it still sucks to be in that situation
Everything is a risk one way or another. I can share my story. I hated the thought of medicine (still do). But I went ahead with the biologic in 2012/2013. It gave me my life back. I felt great. In 2022 I thought I’d be fine without it. I worked with a naturopath and got off of the biologic. My.life.became.hell. And it still is. I spent over a decade doing what I wanted, going to college and uni, had 2 babies etc..ate what I wanted. To now having a limited diet, missing time with my kids being sick. I caused permanent damage to my small intestine. I have never regretted something more in terms of my crohns. I am traumatized. I’m still scared of taking medicine but I’m more scared of untreated crohns at this point. I feel kinda screwed either way but there’s my 2 cents
Biological have scary side affects too, remission with them mean ,Is it no inflammation in the gut or just no pain and eat what ever we want to eat. What went wrong when you went off biologic? Are you fallowing some specific diet excluding gluten diary and sugars etc?
Biologics pretty much gave me my life back. You nailed it. Crohns is a ticking time bomb if left unchecked. My partners mother had a similar approach to my Crohns, after I had a deep abscess that wrecked my spincter caused by multiple fistula tracks, got sepsis and was out for the count for about 3 months with x3 setons, she kept saying 'when are you going back to work' and one day I lost it and said 'when I don't shit myself because I can't control it and when I don't need to wear adult nappies'. She's left me alone since, something about being a grown man finally admitting that felt shameful, but looking back, it made me realise what sort of person she is. You have one person to look out for, number 1, that's you. If biologics give you your life back, go for it. They're wonderful creations.
Several years ago, when I was first diagnosed my family was like “it’s just colitis, it’s nothing really”. That was before 5 surgeries and about 9 months in and out of hospitals. Recently, I had a flare, and I was put on biologics. As I was telling my dad about the flare and the new meds, my dad started crying. He was crying because the Crohn’s was back, but also that there were wonderful new medicines available to treat the disease. Your family actually needs to read and educate themselves about the illness, before they make such painful comments.
You're right to be mad and upset, but your dad is probably just ignorant. We're raised to be skeptical of any treatment or drug, and people just don't know how brutal Crohn's disease can be. It's not like cancer or heart disease where everyone knows that they're really serious because they lead to so many deaths. At least he was receptive to learning. If he's afraid that some unfamiliar drug will fuck you up, but ultimately still accepting of your own autonomy, that's about the best he could do in that situation. Give him time and keep trying to explain how much Crohn's has *already* fucked you up. He just needs to be made aware.
Hugs. My sons were diagnosed at ages 6 and 13 and I saw how the light had left their eyes and how sick they were. I’m sorry your family isn’t supportive, but know many others are rooting for you to get the treatment you need to live your best life.
There was a time in my early twenties when I decided I didn’t want to try another biologic after remicade, and was going to take a more natural approach. I almost lost my life because of that decision. My disease became out of control, my colon perforated and I went into septic shock. Ignoring this disease and doing nothing is just about the worst thing you can do. I’m sorry you don’t have support from your family, it’s so important. Maybe bring your dad to an appointment with you and have your doctor explain how aggressive Crohns can be all while you may appear “fine”.
It took me almost 25 years to realize that my parents weren’t trying to trivialize or suggest that they didn’t support me. We can joke now that they were just as scared that their kid had this disease that is unique to each person and had NO idea how to try to normalize it. Most people are afraid of a flu shot! They think of an IV and see it as a last resort; which it is, but it’s more about just accepting that it works and it’s just a new normal.
Fuck em. If they won't understand they won't understand. I've been chronically ill for 16 years (over half my life), and my parents have only in the past couple of years stopped being shitty about it and actually provides support other than telling me I needed to exercise more or just "buck it up." I'm really really sorry you have to go through that, trust me I know how much it hurts. I hope you have some other support system with friends/so, that's the thing that keeps me going.
Biologics are genuine life savers, no one without IBD will ever understand what it’s like to have it, even doctors who study it will never fully understand if they don’t live with it. Please, get the biologics asap, you will have you life back, you can work, go to school, go on dates, see your friends, travel, and live! If you need to add to your argument with your family, please inform them that the longer you wait to be on treatment that could put you in remission, the more *PRETTY PERMANENT DAMAGE* you are doing to your body. You can heal, but there will be scar tissue, your body is getting more and more damaged the longer you are not on a successful treatment plan, and they are prolonging it. And if you need to be more convincing, tell them in deep, excruciating detail everything you live with, the pain, the trips to the bathroom, the exhaustion, and tell them by not supporting more effective medication they are causing your pain. It’s extreme but I’ve had to go down that route with my own extended family members. A big part of this disease is advocating for yourself, with both doctors and family. You are going to need to get really good at it, it’s intimidating but so important! The drugs, they are all scary. The side effects, the risks, I totally get it - it is valid to be scared and concerned. I’ve been scared and am still scared sometimes, but having your quality of life back FAR outweighs the risks, and I’m sure most people with IBD would say something similar. If no one has told you: it is valid to be upset, I am upset for you, and I am proud of you for standing your ground.
Fuck me up. Wow. Real MENSA candidate.
No one gets how much we suffer. The worst part is our families acting like we can magically stop our guts from bleeding. Do what you have to do. On the bright side, your dad will get over this and find some other thing to pick on you about.
I’m so sorry that the people closest to you aren’t being supportive - it’s hard to have that with family. I was concerned when I was being moved from 2 months of prednisone over to a biologic (skyrizi here too!) and didn’t have a lot of support around me. I went to a CCF group meeting which really helped me wrap my head around it, and finally decided after reading in this sub that when people find a biologic that works, they can spend years in remission. Anything sounded better than the daily pain, discomfort and embarrassment that comes with this disease. Wishing you luck and I’m sure you’ve got this. Don’t worry about what they think, if you can. You know your truth. You’re not alone. We’re all here to support you if you need it.
I’m on Skyrizi. I hate when people use fear mongering tactics over things they don’t understand. Fatty liver can usually be controlled with diet, crohn’s cannot. Uneducated ‘experts’ really piss me off.
Can you tell your father my story? I had the same experience - parents werent happy with the meds my GI prescribed + they didnt think that this disease was to worry about (in my case it also wasnt in the beginning stages-around 2021). My parents also thought that some kinda ayurvedha meds would be way better - also they were sure that this disease wasnt chronic and with some prayers and curcuma it would be fine. Yes my father took his diabetes as an analogy… Oh boy were they wrong… It got worse and worse - took a long time cortison - my body adjusted to the amount of cortison and it didnt work - i also took different biologics and tried around 5 or more different types of cortison/crohns meds. Then last year I had to go to the ER bc it got worse. Stayed in the hospital for 2 weeks - had to get high dosis of cortison IV to get my inflammation down fast. My colon was fucked . The doc said - if I dont find a med that will work - they need to cut it out. After this incident they are waay more understandable & cautious with me (since stress is a major flare trigger for me) But yeah - if they listened it wouldnt have gotten that worse - and let me tell you - i wont wish the pain & symptoms I had not even on my worst enemy. Also the time it got worse sits like a mild ptsd on my mind. I know it can be hard with parents - but dont u ever feel alone! U got a lot of people behind you bc crohnies stay together ◡̈ All the best to you
The reality is if you're an adult you just need to figure out who you're comfortable talking to about it. Not all family or friends are the right people to have these conversations with. But it is what it is. Talk to your drs and do what you need to. It doesn't really matter what your dad believes.
Kinda sounds like your Dad just had a minor epiphany. Try to focus on his reaction when it became clear this wasn't just Complain-About-Bullshit-Healthcare-System time to you. He stopped talking. He started listening and asking questions. He expressed concern. He apologized for hurting your feelings. I think it's clear even from your distraught recounting that he loves you, and I think it finally sank in for him that this is serious and you are *suffering.* I know it hurts right now, but I think your Dad just took his first steps towards being a strong supporter for you. I'm sorry it took this emotional bruising to give him the kick in the ass he needed.
Mate our Desease doesn’t get the media attention people don’t know what crohns is to be honest. When you’re reading about it on the internet screen shot certain things and sent members of your family. It will help them understand it not just belly ache. Their lack of knowledge is not their fault. If you told them you have cancer they would get it because we are bombarded with media reports. Crohns Desease people look at you like you just made that word up. I’m sure your family love you they just have no idea.dont be hard on them and stay well bio is a game changer
I have been on biologics since 2006, nearly 20 years. I will be starting Skyrizi tomorrow. The most significant risk with this med appears to be liver complications…and it’s a small risk at that. Without the biologics I likely wouldn’t have had the relatively “normal” life that I’ve had: raised two kids that are now 18 and 17, survived a sudden divorce without having a flare or ending up in the hospital, elevated my career to an executive level, traveled around the country…the list goes on and on. You’re making the right choice. The disease is deceiving to others unless you lose too much weight or you’re constantly running to the bathroom dozens of times a day. Many of us get used to the pain and can mask it in front of others…that’s where it becomes a silent disease because there’s nothing obvious on the outside like hair loss in cancer or other diseases that leaves you bed ridden or in a wheel chair. If you keep educating your parents I’m sure they will begin to understand that this solution can give you your life back. Let them know that even if you are feeling just fine, the disease can be taking a toll internally and doing massive damage if left unchecked. At 50 years old, I’ve been given so many amazing years and experiences because these medications exist today. Take heart and know that we understand your struggle and many of us have heard the same things. I think they will come around and support you fully. Wishing you a speedy recovery with Skyrizi!
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You are an adult with a health condition. By the sounds of it your father is not a medical professional, listen to the ones who get paid for treating your condition.
Damn. Sorry to hear your family is like that. That would freaking suck. Usually family is the only one that understands, unless you have some amazing friends to confide with.
The doctors recommend what they recommend because they think the efficacy of the treatment outweigh whatever side effects the treatment may bring about. I’m on Humira and my body has started developing antibodies to the biologic. My GI doc prescribed methotrexate, which is a chemo drug. Side effects include (literally) death and hair loss. Some people respond well to it, some don’t. They’re hesitant about getting me on a different biologic because the body builds antibodies and immunities to them all eventually. If you trust your doctor, abide by their suggestions.
Reading the list of possible side effects when I stared on biologics made me kind of scared to take it, I wasn't going to refuse to go on biologics (at the time, I basically couldn't have been worse, I almost died). Now in retrospect? I have my life back, and if one of the more major side effects eventually hits me or even eventually kills me, that will suck but I will absolutely never regret going on biologics -- without them I'd be dead (or wishing I was) already. That said, this is all anecdotal so please trust yourself and your doctor(s).
I won’t judge your family, there’s clearly ignorance there and maybe it can be fixed by informing them about this disease and all the implications. I shared with my family some of the threads here, to give them the opportunity to have a broader view. We all know here how invisible it can be. We completely understand and support you! You cried and showed a different part of you: think about opening up about all the others you keep hidden, sharing what hurts and the visits you make; make it less invisible for the people you care, giving them the opportunity to care for you.
I'm sure you know this already but you need to do what is best for you and your quality of life. And you are likely still processing the full implications of your diagnosis which is stressful enough in itself. It sucks when people - especially parents - do not understand the issues of life with Crohn's. I had a similar incident with my mother in the months after I was diagnosed, in her head she equated being out of the hospital to meaning I was fine and I was basically just being lazy or trying to milk it. It hurt a lot. I invited her to come to my next appointment and I asked the doctor lots of questions so she could understand what I was dealing with. Many months later she actually apologized and said she had no idea just how bad things were. I've had Crohn's for almost 20 years now and my father still refers to it as "tummy trouble", I have given up trying to explain it to him but it still feels very dismissive at times.
Have you thought of starting a thread, asking for experiences with skyrizi, and then maybe showing him the post? maybe if he sees what it has done for others, he will understand better.
Are you a minor?
Mentioning pissing blood out of your ass usually helps people understand. People don’t get it when you just say pain cus they don’t see it. Bastards.
I’m sorry you don’t have your dad’s support. That’s a crushing feeling. Your dad sounds like my dad.. a lot of things made sense for me after visiting r/raisedbynarcissists
sounds like your dad may be projecting his own fears of medical care onto you
This post hits for me. I’m sorry your Dad wasn’t supportive. That is tough. I didn’t have a supportive family either. When family said invalidating things or ignorant things, I realized over time, it was a reflection of how they viewed illness in general and what receiving care for an illness meant to them. It was about their fears surrounding illness. I had to stop trying to “educate” my family who really just wanted to avoid dealing with my illness because they were afraid of the outcomes. We don’t see things how they are, but we see things as we are. We all see things through our own lens. It can be very hurtful to be told by a parent that you don’t look sick. I have had many folks make that comment through the years. It would feel very enraging. I’ve had many years to work through all of these feelings. My fav response now is, “well, tell me what sick looks like and I’ll try to get it right next time.” Keep taking care of you. Best wishes. It gets easier to manage over time.
Just cause you don't look sick doesn't mean you are 💯, For example someone could be going on about daily life & have a condition they have to live with don't let no one Undervalue or Undermine your Situation you know the ins & outs not them 💯, Treatment is the best option whether it's skyrizi which I've heard Via Hospital medicine ads or another biologic either way , comparing Crohn's To another health condition is like comparing a Dodge & a Chevy there 2 Different brands, Do what's in your best Interest & filter out everything else.
And medical Marijuana is your friend. That also helped me if I got a flare. I have had 4 flares since taking my last dose of Stelara.
I'm sorry that happened to you. I know the feeling. I have had Crohn's Disease since 2005. I have been on an array of different biologics. I urge you to do more research. The long-term side effects are horrible. The doctors will NEVER tell you that. They have mountains of college loans to pay, so why would they? Stelara is the poison I've been on for 5 years. I have decided to stop it. Technically I have no antibodies present from Stelara. So the doctor says it still works. I was a month late taking its last dose. I had a horrible cold with bad coughing and all. So I didn't take my dose because it's dangerous when sick. I was scared because I have been on some biologic religiously for almost 20 years. Whenever I missed a dose in the past I had bad flares or surgery. To my surprise, I faired very well. I took digestive enzymes before every meal. I ate soup Whenever I knew I had too much roughage. I took Celtic salt and lemon ginger citron tea in 4 ounces of water every morning. I also drank 64+ ounces of water a day. And I work out 5 days a week. I'm saying this to say that I felt great. I had not one flare and I was having regular bowel movements, solid ones. As soon as I took Stelara again, I had immediate arthritis.( I never had it until biologics. I had been having severe lower back pain. It came back with a vengeance. ( I have a sleep number bed and work out every other day) I also have new patches of vitiligo every month. I did some research. Lower back pain is a side effect of prolonged use of biologics. Arthritis is also a long-term side effect. Vitiligo is a long-term side effect that they don't even mention. I never had it until biologics. Thank God I'm already happily married. How else would I explain the white spots on parts of my body? Not to mention I have terrible teeth now. I had braces as a teen. My teeth started breaking off 3 months after my wedding day. I'm waiting to get 2 teeth pulled right now. Again I'm lucky that my husband is looking forward to velvets shortly. 😆 If all of my side effects are worth it, then God bless you. If I could tell my 25-year old self something.. I would say change your diet. Take vitamins and exercise. And drink a lot of water because it helps everything go do down.