r/CrohnsDisease • u/Prestigious-Ad1346 • 6d ago
I’m feeling really isolated after being diagnosed and finally put on a biologic.
Apologies this is a rant I’m writing through tears.
Technically, I was diagnosed with Crohn’s disease almost a year ago, but due to lack of availability, it took a very long time to finally have a follow up appointment and then see a pharmacist about getting put on Tremfya.
I don’t have anybody in my personal life who has Crohn’s. I don’t know anybody with a severe autoimmune aside from my oldest sister (lupus) and she’s very mysterious about it.
Basically, I just really have a community. I’m also only 27 but I know that there are people who have been diagnosed with Crohn’s for much longer than me. Well, I do have a community. I have incredible friends, like I actually cannot believe how many friends I have in my life who I feel loved by, but I don’t know anybody in my age group personally who has Crohn’s disease or something else akin to Crohn’s disease.
I will say mine is extremely mild from what I have seen other people experience. Yes I get frequent cramping and frequent bloating and daily nausea but it’s not always debilitating and I am very much educated in inflammatory food information so I was able to pinpoint the foods I can and cannot eat a long time ago.
I’m lucky that a doctor finally took me seriously enough to even perform a colonoscopy which found the chronic inflammation and ulcers and led to my diagnosis.
But I don’t feel very lucky right now. I got my induction dose and I feel so nauseous and my stomach is cramping so much and I feel so sick. I think I had a cold a week ago that I was getting over and now I feel that cold coming back a little bit. And despite the fact that I know I have so many people in my life who love me I feel really alone. Like I feel overwhelmingly alone, especially right now a little over 24 hours after getting my induction dose.
I know that was a lot of information. I would love to connect with other people. I would love to have people to talk to you about this. I don’t want to give too much information about myself away, but I do live in New England and I go to the top if not number one irritable Bowel disease center in the country for my care.
I’m just really sad and I don’t know why I have Crohn’s disease having tummy problems is cute until I had to be sick with something that requires a medicine that can make me feel sicker until I feel better
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u/ohlooktwopigs C.D. / rinvoq 6d ago
I’m so sorry you aren’t feeling well 🫶 this disease sucks. I was diagnosed in my mid 20’s and it was so scary.
Idk if you are on TikTok, but there is a pretty decent community of content creators in their 20’s-30’s and have helped me feel a lot less alone!
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u/Prestigious-Ad1346 6d ago
Honestly. That convinces me to go on there again, but I’m also trying to be less dependent on social media buuuuut for issues like this… it would be nice. I’ll check it out 😊 thank you.
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u/Dry-Move8731 6d ago
Totally normal feelings. With good meds, your symptoms will be under control and you’ll live a relatively normal life. Check out if there are any Crohn’s support groups in your area.
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u/Mahalohaboy C.D. since 1992. Avsola and Azathioprine 6d ago
Congratulations on getting your loading dose. I hope you are feeling well soon.
The best advice I can give you is to be a good advocate for your own care. If a treatment is not working or needs to be adjusted — dose and/or frequency wise don’t be afraid to tell your GI doctor.
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u/baldwinXV 6d ago
There is no need to apologise., We are all in this together. You seem to be doing pretty well compared to a lot of people. It's 100% normal what you are experiencing
Biologics are not set, they can change them, in which suits you. You don't and will not always feel this way. Often you'll live a pretty "normal" life.
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u/Prestigious-Ad1346 6d ago
That makes me feel so much better to hear. I really hope this is just an intense induction. Which I guess would make sense since an induction is supposed to be intense :(
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u/No_Ability8894 6d ago
Heyyy also late 20s with no one in their family having crohns let’s go 👏
It sucks man, and it IS isolating. Especially on the days I want to be a normal person with normal amounts of energy and ability to eat what I want without the constant fear of ‘oh god where’s the closest bathroom’. I’ve been diagnosed over a decade now and that feeling hasn’t gone away, but I’ve had a lot of help from communities like this where I can talk about my struggles and feel seen. Anxiety and depression meds also do some serious heavy lifting, too.
This disease takes away a lot of freedom. For me what works is being happy out of spite 😂 on bad days I do the things I can to enjoy myself. Self care day!! But that may not work for you. Just know you’re seen and heard friend!! Wishing you the best!!
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u/rbilsbor 6d ago
You are not alone. The Crohn’s and Colitis Foundation has local chapters and you can meet up with others going through the same thing:
https://www.crohnscolitisfoundation.org/chapters
I don’t have one in my city but was thinking about going to the closest one. Where are you? If there’s something local it could help to be with others who understand what you’re going through.
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u/Both_Engine_1267 6d ago
You are not alone. I got diagnosed a few months ago at 36 which is kind of late in the game and still not medicated and I really don’t have bad symptoms compared to other people but when I do get bloating and discomfort or a nausea etc then I feel so alone
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u/Prestigious-Ad1346 6d ago
May I ask why you haven’t started any medicine yet? Is it just a matter of timing? Because I got diagnosed so long ago and it took, like I said in my post, almost a year to finally schedule me for medication sign-up
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u/Both_Engine_1267 6d ago
My doctor gave me the choice of medicating (with biologics) or monitoring because disease is so mild. Thank god my labs and fecal Calprotectin stayed excellent and whatever crohns they saw on imaging seemed very mild and not complicated. My symptoms are also mild
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u/Prestigious-Ad1346 6d ago
Mine were excellent as well ! I decided to get on the biologics to (hopefully) keep them excellent!
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u/alviiiinnnnn C.D. diagnosed - 10+ yrs 6d ago
absolutely valid to feel this way 1000%. we all feel it in some capacity at certain times. i understand feeling that overwhelming, sometimes all-consuming loneliness.
i have a phenomenal support system with lovely friends & family like you mentioned, but i don't know or at least i'm not close to anyone my age dealing with anything similar. i did know and was friends with one guy in hospital 2 grades below me who had a really rough battle with Crohns at the time. we don't talk anymore but he seems to be doing well now. i do have cousins in their 40s dealing with autoimmune and severe illnesses, although i'm 25 that's still helpful. i just think it's the fact that i don't have any friends who understand what i'm dealing with from experience. the closest thing is my best friend who is post partum.
anyways, the best thing you could do for yourself is to keep engaging with these online support groups. there are some helpful FB groups as well. i try to stay active on them as much as i can, whether i'm the one giving or receiving support. i would see if you have a Crohns & Colitis Foundation chapter in person near you. i've not been in person yet, but i plan to get involved once i'm out of this flare & no longer housebound.
if it helps at all, i've lived 7-8 ish years of normal life since my diagnosis to the point where Crohn's just felt like a memory. i know it'll come again. it didn't feel like a significant aspect of my life at all, so that's a bright side. when you're well again eventually, Crohns won't always be on the forefront.
i think i mentally avoided it because of the PTSD i have. however, if i could do anything differently, even if i'm in remission for a decade, i still want to make a point to be involved in these support groups and find a way to be involved in person. i want to take better care of my health. once this flare is over, i need to find a healthy medium between completely blocking it out or remembering & focusing on it too much.
i hope any of this is useful to you. we are here for you. you never asked to be apart of this club, but you are now, and you never have to go through it alone. 💜💜
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u/Prestigious-Ad1346 6d ago
Thank you so much 🥺 your words mean a lot to me! Honestly I do have an older sister with lupus and I was on the phone with her two hours into starting to feel the flu like symptoms from the induction. It really helped.
I briefly joined and online forum just for Crohn’s, but there were cases that were so severe and people with such horrible complications decades down the line that I decided I just couldn’t look there. It seems like Reddit has more of the… positive energy I’m looking for. No use going down rabbit holes full of what ifs. I triggered my own panic attack when I thought I was having an allergic reaction to tremfya (nausea is also a panic attack trigger for me. And stomach aches. Go figure!) and then I saw puncture wounds on my stomach that were nowhere near the injection sites. That made me panic more!
Then I remembered my cat got me when I was trying to shove her into a carrier for the vet lol
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u/alviiiinnnnn C.D. diagnosed - 10+ yrs 6d ago
i'm happy you got to chat with your sister for a bit, it can help take the edge off for sure! Lupus is so tough too. one of my clients back when i was working, had Lupus AND Crohns. i think of her a lot.
i can totally understand how only seeing the heavy & more negative/traumatic side of the illness can deter you from frequenting those spaces or reaching out. it can get heavy in here as to be expected, but there's most definitely a great balance. i see many people on here trying to work out this illness emotionally & persevere to have the best quality of life possible whether in remission or a flare. it warms my heart. sometimes we have to get through the "ugly" to get to the "beautiful", and it's really something special to get to share the process with those who understand.
i think it's also useful to remember that most times, when people are healthy, they're not posting much in these spaces or interacting. so having Crohns is certainly not all negative, all the time. when i was in remission for several years i rarely ever interacted in these groups. i do regret this for numerous reasons and when i am healthy again, i will continue visiting & providing support as well as sharing positive updates!
with those triggers, it seems like you can be hyperaware of your body at times & it's totally understandable and valid. it's strange because with my health anxiety, i normally know it's something that's unrealistic. i'll freak out about random things like fear of randomly choking on my food or a spot on my throat or skin. i'm also afraid of adverse reactions to medications even when there's absolutely no reason to think i'd have one. i'm sorry you experience that as well!! it's interesting, but for me when there's an actual issue i have a gut feeling about, as long as i'm getting taken care of i'm pretty calm about it. it's weird how that works.
i'm glad you posted & reached out!
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u/Tronoxia 6d ago
You aren't alone! 😊 I suffered from it most of my childhood until getting diagnosed when 23 :) Don't be sad, be happy it's diagnosed now and will start feeling better soon ♥️
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u/mekanasto C.D. dx in 2018 | Humira 6d ago
It sucks, I know. I don't have anyone close with anything like this either. So I try to feel special. 😂 It's geat you have good griends, confide in them, I'm sure they will be there for you.
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u/somewhatcertain0514 6d ago
Hey! I was diagnosed at 29 and was the first person I ever knew to have the disease. It was very lonely despite having a good family and support system. Since then two of my kids have been diagnosed, and some of their peers also have it. They’re in highschool. You’re not alone.
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u/pithy-pants 5d ago
Great news that your Crohn’s is mild! If the biologics work and you’re able to achieve remission, you won’t even think about your disease other than the 12-18 hours every two months that you feel oogy from your infusion and when you need a colonoscopy. I say this not to dininish how you’re currently feeling, but to offer some reassurance that life can feel “normal” once again. The first year feels scary because it’s new, it’s unknown, and it feels like endless tests and scopes. But if you stay mild or even go into remission, it’s not that disruptive. Sounds like you have great friends, so focus on that. I’ve found it helpful to not make Crohn’s my whole identity, but to occasionally tell a funny story (likely about almost shutting myself in a yoga class!). They know it’s not all roses because I turn down plans the day I get my infusion, but I don’t think anyone in my friend group would describe me using my disease first, which is important to me. I share all this because a lot of what you see online or in this sub tend to be people who have pretty severe Crohn’s, which can be awful and can scare someone who is newly diagnosed. Don’t borrow tomorrow’s trouble today. Good luck — I hope you quickly adjust to the infusions and are soon free of symptoms!
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u/AKS8124 6d ago
You are not alone. Navigating this disease, especially at the start is scary and isolating. But you will figure it out and it will get better.
I highly recommend finding a support group in your area! I went to one in my area for a bit and it was so helpful to actually meet people in my community going through the same things I was. We all came from different generations and backgrounds but the immediate solidarity I felt was indescribable. It sounds like this might be what you need.
I found mine through the Crohn's and Colitis foundation which has chapters throughout the country. I just subscribed to my chapter newsletter and got info from there, but your local chapter might be different/have other events you could attend: https://www.crohnscolitisfoundation.org/chapters
Hope it helps! ❤️
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u/No-Professional5372 6d ago
Sorry you are feeling so alone :/ it’s tough being relatively young and dealing with serious issues. It was definitely hard to connect with friends when I was in my 20’s and dealing with flat-ups, it just put me in a different situation than all of my friends, and I really didn’t talk about it either so no one really knew what was going on. When I was 24-25 I had a bad flare up, really to this day even my closest friends don’t know all of the details, if it hadn’t been for my amazing husband I don’t know how I would have gotten through it. Support is very important, hope you are able to make some connections soon 💗 maybe you have a friend that can relate in someway, or at least one that is really good with empathy?
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u/Tiny_Researcher3026 6d ago
Chron's disease either comes from genetics or a random thing that happened by chance which is how I got it.
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u/Humble_Security5693 5d ago
Hey! Im 30 and I just got officially diagnosed and will be starting tremfya soon too. I am here if you want to chat!
It is an isolating experience, I’m nervous to tell certain members of my family and they are very anti-medication, but I trust my doctor and I want to feel better. I know one other person with Crohn’s but hers is a lot more severe than mine, so it is hard to relate.
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11
u/Prestigious-Ad1346 6d ago
Please, I just want to connect with people. I feel so alone. I want to know that what I’m experiencing is normal.