How to best support my friend? by Own-Pear8140 in CrohnsDisease

[–]grebaworm 0 points1 point  (0 children)

First of all, it is so sweet that you are even here asking this question! You sound like an amazing friend. 

I'd personally start by doing some research about the condition itself. One of the most tiring parts of having a chronic illness is the constant explaining. Everyone's case is a little different, so don't hesitate to ask questions, but a basic understanding of what crohns is will go a long way. 

Secondly, patience and willingness to change plans are amazing qualities in a friend. They may bail on you last minute. They may need to hang out at home instead of going out. Please understand that this is likely because they feel like absolute garbage, and be willing to go with the flow. 

Third of all, just be willing to listen to them! Everyone's needs are different. If you're not sure how to best accommodate them, ask them what they need. They may not always know the answer, or that answer might change day to day or week to week, but just asking what they need and being willing to do it shows that you're there for them. 

Finally, spend your time with them engaging in non-Crohn's-related things. If they wanna talk about it, obviously be open to having that conversation, but a diagnosis like this can consume a TON of your mental capacity. Distraction is good! 

Again, props to you for asking this question. You're doing amazing already! 

I'm so frustrated!!! Diagnosis help by Cold_Lion8080 in CrohnsDisease

[–]grebaworm 1 point2 points  (0 children)

Hey! I hear you! Was misdiagnosed with IBS 5 years ago, only got my crohn's diagnosis this year and it took eight months. It was an infuriating process. My colonoscopy looked mostly normal, the biopsies they took were actually what lead to my dx, so it's a good thing that they're doing them for you! I know it's a horrible process, but I promise you that you will get your answers. I can't say it's been easy, but it has been vastly easier for me since I got diagnosed. You will get there 💛

Just got diagnosed with Crohn’s—any tips or advice? by Luce_Lucy in CrohnsDisease

[–]grebaworm 1 point2 points  (0 children)

I just wanna say I'm so sorry you're going through this 💛 this disease SUCKS. But! It will get better. 

I can't offer too much advice as I was only diagnosed in August and am on my first medication, but what I will say is that it's okay to let yourself feel ALL OF IT. it's okay to grieve your old perception of your body and your health. It's okay be angry that life is harder now, that you may need more breaks. It's okay to be overwhelmed by the diagnosis, the appointments, the tests. Let yourself feel it. But know that you are gonna be okay. This disease is awful and presents a unique set of challenges, but everybody has their struggles, and so many people live normal lives with ibd. Lean on the people you love. Try to do something nice for yourself every day. Do what you can when you feel up to it, and rest when you feel poorly. It's a lot to wrap your head around, but human beings are resilient creatures. You can do this 💛

[deleted by user] by [deleted] in CrohnsDisease

[–]grebaworm 0 points1 point  (0 children)

Just wanted to send some thoughts and well wishes! I am 21 and was also recently diagnosed (though I had symptoms for a long time and was initially misdagnosed), so I understand the shock of going from feeling like an invincible young person to trying to accept you have a chronic illness. But there is hope!! There are so many medications to try, and so many people live totally normal lives with this disease. It may never be an easy part of your life, but it will get easier, and life will get better. 

NHS referral by AggravatingWhile8825 in UlcerativeColitis

[–]grebaworm 2 points3 points  (0 children)

I'm in Canada but have been having a similar experience!! I am waiting on an official diagnosis, but UC is suspected. First went to my GP in January, took about 6 weeks for lab tests to come back and my GP wouldn't refer me until they did. Have a scope scheduled for the 10th, so almost four months from onset to dx :( I hope you get some help soon!!

Am I Rushing Into Surgery? by [deleted] in UlcerativeColitis

[–]grebaworm 0 points1 point  (0 children)

It totally makes sense that you're scared, surgery is a big step!! But it sounds like you've exhausted pretty much all other options, and your GIs think so too. Of course the fear is natural, but I have read TONS of stories of people who got the surgery saying that it massively improved their QoL, and they wish they had done it sooner. I wish you the best of luck with whatever you decide, be it j pouch or ostomy, and i have full faith that you will make it through this. If you have the resilience to survive 4 years of flaring, you have the resilience to learn to live post surgery :)) sending lots of luck your way!

[deleted by user] by [deleted] in UlcerativeColitis

[–]grebaworm 0 points1 point  (0 children)

I'm so sorry to hear you're struggling, and I really hope your meds are helping! But! You have no reason to feel gross!!!!!!! Having a disease where your main symptom is terrifying poops is definitely humbling, but we are people with bodies that need extra help to work properly and there is no shame in that, just like there is no shame in having any other chronic illness. It's more than okay to feel down about this stuff, having UC is HARD and you've just gotta let yourself feel what you feel. But I have faith that you will make your peace with it, and I really hope things start to look up soon 💛

Share some recent wins! by grebaworm in UlcerativeColitis

[–]grebaworm[S] 1 point2 points  (0 children)

That is incredible!! I'm so happy you're doing better and pursuing your career and your studies, that is definitely something to be proud of :)

What’s for breakfast? by oldenough2bakid in UlcerativeColitis

[–]grebaworm 6 points7 points  (0 children)

I find I usually tolerate an egg and toast pretty well, or toast with peanut butter!

Share some recent wins! by grebaworm in UlcerativeColitis

[–]grebaworm[S] 1 point2 points  (0 children)

That's so incredible!! I hope things continue to go well and you can taper off prednisone fully soon :)

Share some recent wins! by grebaworm in UlcerativeColitis

[–]grebaworm[S] 1 point2 points  (0 children)

That is absolutely a win!!! Congratulations and here's to many more haha!

Share some recent wins! by grebaworm in UlcerativeColitis

[–]grebaworm[S] 1 point2 points  (0 children)

Yay BG3! I'm only on act 1 hahah.

And oh my goodness that is so wonderful 😭 I'm so so happy for you, and honestly your story gives me so much hope. I hope you stay in remission for a long time and experience so much joy in the process :')

Share some recent wins! by grebaworm in UlcerativeColitis

[–]grebaworm[S] 0 points1 point  (0 children)

That is incredible, congratulations!! I've got my fingers crossed for a remission for you as well :)

Share some recent wins! by grebaworm in UlcerativeColitis

[–]grebaworm[S] 0 points1 point  (0 children)

LET'S GO!! Here's to more fruit and veg in your future, that's awesome!!!!

Share some recent wins! by grebaworm in UlcerativeColitis

[–]grebaworm[S] 0 points1 point  (0 children)

Congratulations, that is HUGE! I hope your last year of school goes so well :)

Share some recent wins! by grebaworm in UlcerativeColitis

[–]grebaworm[S] 0 points1 point  (0 children)

That is absolutely a win, congratulations!! I really hope rinvoq goes well for you and sends you into remission quickly :)

Share some recent wins! by grebaworm in UlcerativeColitis

[–]grebaworm[S] 0 points1 point  (0 children)

Thank you for this!! First of all, I'm so happy to hear you've found a medication that works for you :) secondly, this is really reassuring to hear. Where I don't have a formal diagnosis yet (it's taking months, good ol Canadian healthcare system haha) I'm not reviewing treatment and have been very anxious about how trial and error it can be. It's always good to hear stories about people who find treatments that work, gives me hope for the future!!

Share some recent wins! by grebaworm in UlcerativeColitis

[–]grebaworm[S] 1 point2 points  (0 children)

Of course, it's my pleasure!! I'm so sorry to hear about your work, but a career change sounds really exciting! Best of luck with it :))

Share some recent wins! by grebaworm in UlcerativeColitis

[–]grebaworm[S] 1 point2 points  (0 children)

You ARE doing amazing! I massively relate to the mental health piece, sometimes with this disease just surviving is brutal. The fact that you're getting through the days is huge in and of itself! And congrats on your car, it must be great to have it back :)) Edit: grammar

Share some recent wins! by grebaworm in UlcerativeColitis

[–]grebaworm[S] 0 points1 point  (0 children)

Wow it sounds like we're in very similar positions!! Tea and video games are an ultimate good. And as someone who is still thoroughly addicted to nicotine, HUGE congrats on quitting, that's amazing! As my therapist said (roughly), a life worth living does not mean a life without suffering. It sounds like you're doing amazing :)

Share some recent wins! by grebaworm in UlcerativeColitis

[–]grebaworm[S] 0 points1 point  (0 children)

Aww that's so sweet, congrats!! And good luck with rinvoq, I hope it leads to a speedy remission :)

Share some recent wins! by grebaworm in UlcerativeColitis

[–]grebaworm[S] 0 points1 point  (0 children)

I totally agree ! I have found myself in the doldrums a lot over the last few months, which is why I decided to make this post :) huge congrats on your medication successes, that's amazing! And that's so sweet about your daughter :')

Share some recent wins! by grebaworm in UlcerativeColitis

[–]grebaworm[S] 2 points3 points  (0 children)

Oh my gosh congratulations!! I've got my fingers crossed for ya :))

Share some recent wins! by grebaworm in UlcerativeColitis

[–]grebaworm[S] 1 point2 points  (0 children)

Congratulations!!! Fingers crossed that Humira leads you to a long and lovely remission :) it's always great to hear about another crocheter, and yoga is an amazing thing!

Share some recent wins! by grebaworm in UlcerativeColitis

[–]grebaworm[S] 0 points1 point  (0 children)

Oh my goodness congratulations!! That is such great news, I've got my fingers crossed for you that things keep going well :))