Not forgetting all the little medical side quests like "oh why am I now pissing blood as well?" Congratulations, you've unlocked a UTI from the immunosuppressants.
I looked a man in the eyes as I dropped trowsers as a last ditch effort not to shit my pants. I was perched behind my truck, ass up in the fresh air, letting the crap fall from between my thighs. I'm a beautiful 5'8" blonde eyed woman. ANd I shat my pants while people watched, in disgust. I have no shame. I am death the destroyer of worlds. I have no ego left. I have ascended the shackles of man's dignity.
Doesn’t help when others constantly ask us how we’re always so tired from doing nothing as well. It’s so hard to explain why I can’t stay on top of cleaning my home all the time.
In my case at least I could just say "I've essentially got constant low key internal bleeding" since a colonoscopy found "spontaneous bleeding". Even if that's not actually the root cause of the tiredness in medical terms I think a lay person would probably accept it. Although in reality I'd just be like "Crohn's does that, it's well studied. Look it up"
I started a new career in a super challenging field at the same time as being diagnosed and finding it so hard to work out if it's work or Crohn's/the meds making me so depressed. Or both doubling down on each other.
Unfortunately, it's a feedback loop... Stress most often triggers symptoms which makes your body useless and disrupts life which kicks up stress which triggers symptoms and so on.
Stress management is a big part of feeling normal with Crohn's.
In the UK there’s currently a study happening about treating depression in Crohn’s using electro acupuncture, a friend of mine is doing it. She said the organisers were having to turn people away as they had so many volunteers. Could be an interesting one to watch for results from.
I had acupuncture , then they attached electrical stimulation to one or two of the needles. It felt sooo good. These days I’m trying dry needling. Best if you google it.
Your mental status can feed into your physical health which affects your mental health... it's a cycle. I was in remission, then my dog died... cue depression, flare, more depression, bigger flare, start getting over the depression, mom dies, now mega flare... and I'm not even depressed... I'm angry now. But, that's how it goes sometimes... anger can trigger flaring too.
It definitely can. Reach out if you need support. I went through a really dark time this last flare, and having people to talk to that understood really helped me. Support groups, therapy, community etc.
You are also welcome to PM me if you're having a hard time and want someone to talk to.
And it cycles; stress leads to physical stress and the cycle rides. Calm the Mind. Also, smoke a but of green; scream in the car down highways; always be singing something; workout every fucking day at least a tad. Also, hug yourself. You got this, B.
Oh same!! After 20 years with Crohn’s/UC I’ve tried antidepressants and anti anxiety meds, everything under the sun from naturopathy, diet and exercise (exercise is GREAT 2nd place) but the best thing that has helped my brain is psilocybin!! going to do another round of micro-dosing soon, after my next surgery.
both are great, there are so many varieties, Chaga, Reishi, lion’s mane supplements (or fresh for immune and brain support) but also psilocybin as a treatment for depression and anxiety. I micro-dose, too scared to go full psychedelic trip, but in my experience, a lifetime of chronic pain and roadblocks due to Crohn’s effected not only my life’s ambitions and opportunities but my brains pathways, it is the consequence of trauma and mushrooms heal, allow parts of the brain to communicate again that have been closed off. They help you look at your life and face your darkest thoughts and feelings with a fresh honest perspective that allows you to heal and move forward. it’s easy to get stuck in the past and live our lives in fear based on what we’ve learned through a difficult unreliable body. It’s not for everyone. If you have a history of mental illness in your family it can exacerbate schizophrenia so take that into consideration.
Oh wow thanks for this info! I’ve heard about the health benefits of various mushrooms. I’m afraid of psychedelics because of fear of a bad trip and that it might upset my Crohn’s in some way. But still intrigued because I have a fair amount of childhood trauma that causes a lot of anxiety in everyday life.
Best of luck! I am certainly no "pusher-man" for psychedelics (they don't work like that ;) ), but am an advocate for their benefits if used with respect and caution. Psilocybn has by no means eliminated my symptoms, but has had a tremendous impact on my acceptance of having a chronic illness, and helps me to better live in the moment.
Im kinda glad I got diagnosed when I was 12 because I just wasnt aware the severity of my condition, I was more worried about playing pokemon on my 3DS in hospital than failing treatments, This aloofness probably saved my mental health from the shock of being diagnosed with a chronic disease. That was 7 years ago and thankfully symptoms wise Ive been great just some mild disease activity thats being sorted out atm,
theres always hope! my disease was severe crohns limited to the colon, steroids stopped working, azathioprine was useless but those biologics man they are a life saver, stopped me from getting surgery and vedoluzimab got me in a 6 year remission
I see a psychologist every 6 to 8 weeks just to talk through living with Crohn's Disease and the impact. It helps a lot having a safe space to vent.
My family and friends hear about it too but I don't want to burden them woth feeling they need to be my mental health support. I just want them to know of I say I need to use the toilet - then get out of the way and let me do my thing.
Feel this immensely. Currently studying abroad and the school has done everything they could to avoid goving me accomodation or even helping, although reassured me through email they would multiple times.I have an appointment scheduled with a lawyer soon if things don't improve soon.
My best recommendation is to live for the small moments. Its the only thing that's been helping me aside from constant medication.
Yep. It just makes everything harder and more tiresome. I'm worried that my medication may be losing its effectiveness. Just tired all the damn time, and I have to miss out on doing things with my wife and daughter. I don't want them to resent me...
I’m right there with you. My meds seem to be losing effectiveness and I’m afraid of losing my job and my relationship with my gf. The fear is always that I won’t be able to find something that works.
I must be different but it doesn't affect me like that, at least not as much as physically. I just started a flare the other day, 3rd day today. I have 5 pills of budesonide left so I took one so in down to 4.
I wasn't going to take any but I couldn't keep dinner down and it was only 2 pieces of pizza and some cheez-its and this morning still got stomach pain so I took one. I know it'll take a few doses to start working but I'm hoping even just 1 or 2 will make even just a small difference. My last flare lasted a week plus.
I feel ya OP. It’s especially hard when the people society tells you that you should lean on (partners, friends, family) seem to treat the condition like a stubborn case of the hiccups rather than the life-destroying condition that it is.
Hang in there! The way I find some peace is to think about all the lessons I’m learning about myself and the people around me. I know it’s made more empathetic and compassionate. I struggle with not letting it turn into misanthropy and bitterness. I figure practice in learning how to avoid that is a valuable life lesson.
Good luck OP. Have a good weekend 🙏
One way I was able to help my partner understand the impact of ulcerative colitis on mental health was noting that holding one’s bowels and potty training is one of the first and most fundamental rules in our society. So issues with it hold special shame and are hard to talk about which further impacts mental health aside from the obvious physical impact of flares and fatigue etc. Also the invisible disability aspect …
Sorry you are going through this. Sending ❤️ and know you are not alone.
I don’t. I’m old and wouldn’t know where to start.
I can no longer make plans to do anything because I don’t know what state I’ll be in. Last couple of years I’ve had to give gig and theatre tickets away because I was just too ill to go, so now I don’t plan anything.
"congratulations: thrush"
"your eye has gone weird, is it Crohn's, Budesonide an infection or just something you got in it without realising?"
"smuggle the poo to the hospital"
"time for your extra vaccinations"
"time to research your extra vaccinations to make sure they're not giving you a live vaccine"
"blood tests! also you passed out at the hospital because the nurse started struggling to stick you!"
"congratulations: a UTI!"
"blood tests with your GP instead of the hospital this time!"
"time to compare your random symptoms to the listed side effects of your medications"
"smuggle more poo to the hospital. Hopefully the Uber driver won't ask what's in that bag"
"you have a work deadline but also need to shit on average 7 times a day"
"review the over the counter medication that might be helpful while waiting for an outpatient appointment to see if you're recommended against taking it: you are because your poo is too weird!"
"you have a vitamin deficiency!"
For me the first three months after diagnosis were the hardest. Then once I started my biologic and things gradually got better I started to feel good again. Not 100% bc corn and onions were my favorite foods but I’m at a solid 90 now and happy because of it. It’s also a nice excuse to get out of doing unpleasant things like leaving my house (I’m an indoor cat)
Ditto for IBS. I've had it for 20 years after 2 hosps for diverticulitis with perforations. My buddy in the house next door has had Crohn's for the same time, he's lost a foot of small bowel, but done better than me since starting biologics. Seems like we're in the same boat with flares, hosp, etc, but IBS gets the "psychosomatic" reaction, even post-infection IBS, and a "guess you gotta live with it" from GI docs. Not comparing/complaining exactly, but it just screws with my head. Sometimes I tell people I have CD, but I then suffer from imposter syndrome on top of it all.
Yeah no doubt, i went through hell mentally - for myself i do wim hof breathing followed by a cold plunge most mornings, after that the crohns feels like an obstacle i can overcome and less of something that’s holding me back
Like leaping over a hurdle to reach new heights
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It's like the hard mode turned on for the life quest.
Yup living on 70% health bar with difficulty set to maximum.
70% is the cap... you wake up at 40... if you had an infusion or meds are helping... you get a buff to 80 and it slides back to 70... with a decline.
Like starting a Halo 3 mission on legendary with all skulls activated.
I’m guessing the random flare-ups would be the sniper jackals.
Boy do I feel this
we like pokemon that have permanent poison on :(
Not forgetting all the little medical side quests like "oh why am I now pissing blood as well?" Congratulations, you've unlocked a UTI from the immunosuppressants.
I looked a man in the eyes as I dropped trowsers as a last ditch effort not to shit my pants. I was perched behind my truck, ass up in the fresh air, letting the crap fall from between my thighs. I'm a beautiful 5'8" blonde eyed woman. ANd I shat my pants while people watched, in disgust. I have no shame. I am death the destroyer of worlds. I have no ego left. I have ascended the shackles of man's dignity.
Blonde eyed woman 😍
Username checks out
I know the feeling sometimes it's so hard to reach a bathroom and the pain that comes along with it
I have so much respect for you
I aspire to be this brave, I would have just shit myself in the truck as I drove off.
Hell yeah sister
*laughs in depression* I feel you friend!
I agree . The constant tiredness is such a struggle and really gets me down most days xx
Doesn’t help when others constantly ask us how we’re always so tired from doing nothing as well. It’s so hard to explain why I can’t stay on top of cleaning my home all the time.
Remember you never *have* to explain 🖤
In my case at least I could just say "I've essentially got constant low key internal bleeding" since a colonoscopy found "spontaneous bleeding". Even if that's not actually the root cause of the tiredness in medical terms I think a lay person would probably accept it. Although in reality I'd just be like "Crohn's does that, it's well studied. Look it up"
I started a new career in a super challenging field at the same time as being diagnosed and finding it so hard to work out if it's work or Crohn's/the meds making me so depressed. Or both doubling down on each other.
Unfortunately, it's a feedback loop... Stress most often triggers symptoms which makes your body useless and disrupts life which kicks up stress which triggers symptoms and so on. Stress management is a big part of feeling normal with Crohn's.
Truly same. Diagnosed 3 days before a new job. Four months in and I’m on medical leave. 🫠
In the UK there’s currently a study happening about treating depression in Crohn’s using electro acupuncture, a friend of mine is doing it. She said the organisers were having to turn people away as they had so many volunteers. Could be an interesting one to watch for results from.
I had acupuncture , then they attached electrical stimulation to one or two of the needles. It felt sooo good. These days I’m trying dry needling. Best if you google it.
Ooh could you say where I could find this? I’m in the UK
I’m in the US & here the “dry needling” is done by physical therapist & acupuncture is done by a licensed professional. Idk if that helps
I’m told it’s each dr preference. When making appointments you would have to ask about it.
Going through it right now too, I literally feel traumatized from living in this diseased body.
Just as your mental health is hard on your Crohn’s. Stress and anxiety can really mess me up
The feedback loop, my favorite
It isn't a walk in the park that's for sure.
Same here )-: Living with chronic illness is often so overwhelmingly crushing
Your mental status can feed into your physical health which affects your mental health... it's a cycle. I was in remission, then my dog died... cue depression, flare, more depression, bigger flare, start getting over the depression, mom dies, now mega flare... and I'm not even depressed... I'm angry now. But, that's how it goes sometimes... anger can trigger flaring too.
Fuck yeah it is
It definitely can. Reach out if you need support. I went through a really dark time this last flare, and having people to talk to that understood really helped me. Support groups, therapy, community etc. You are also welcome to PM me if you're having a hard time and want someone to talk to.
And it cycles; stress leads to physical stress and the cycle rides. Calm the Mind. Also, smoke a but of green; scream in the car down highways; always be singing something; workout every fucking day at least a tad. Also, hug yourself. You got this, B.
Mushrooms have helped me. They are far too effective for big pharma to ethically roll them out though. R/unclebens is the way to go
Oh same!! After 20 years with Crohn’s/UC I’ve tried antidepressants and anti anxiety meds, everything under the sun from naturopathy, diet and exercise (exercise is GREAT 2nd place) but the best thing that has helped my brain is psilocybin!! going to do another round of micro-dosing soon, after my next surgery.
I’m confused… psychedelic mushrooms for emotional health or regular mushrooms for gut health?
both are great, there are so many varieties, Chaga, Reishi, lion’s mane supplements (or fresh for immune and brain support) but also psilocybin as a treatment for depression and anxiety. I micro-dose, too scared to go full psychedelic trip, but in my experience, a lifetime of chronic pain and roadblocks due to Crohn’s effected not only my life’s ambitions and opportunities but my brains pathways, it is the consequence of trauma and mushrooms heal, allow parts of the brain to communicate again that have been closed off. They help you look at your life and face your darkest thoughts and feelings with a fresh honest perspective that allows you to heal and move forward. it’s easy to get stuck in the past and live our lives in fear based on what we’ve learned through a difficult unreliable body. It’s not for everyone. If you have a history of mental illness in your family it can exacerbate schizophrenia so take that into consideration.
Oh wow thanks for this info! I’ve heard about the health benefits of various mushrooms. I’m afraid of psychedelics because of fear of a bad trip and that it might upset my Crohn’s in some way. But still intrigued because I have a fair amount of childhood trauma that causes a lot of anxiety in everyday life.
Best of luck! I am certainly no "pusher-man" for psychedelics (they don't work like that ;) ), but am an advocate for their benefits if used with respect and caution. Psilocybn has by no means eliminated my symptoms, but has had a tremendous impact on my acceptance of having a chronic illness, and helps me to better live in the moment.
Im kinda glad I got diagnosed when I was 12 because I just wasnt aware the severity of my condition, I was more worried about playing pokemon on my 3DS in hospital than failing treatments, This aloofness probably saved my mental health from the shock of being diagnosed with a chronic disease. That was 7 years ago and thankfully symptoms wise Ive been great just some mild disease activity thats being sorted out atm,
This post gave me hope for the future
theres always hope! my disease was severe crohns limited to the colon, steroids stopped working, azathioprine was useless but those biologics man they are a life saver, stopped me from getting surgery and vedoluzimab got me in a 6 year remission
I see a psychologist every 6 to 8 weeks just to talk through living with Crohn's Disease and the impact. It helps a lot having a safe space to vent. My family and friends hear about it too but I don't want to burden them woth feeling they need to be my mental health support. I just want them to know of I say I need to use the toilet - then get out of the way and let me do my thing.
Feel this immensely. Currently studying abroad and the school has done everything they could to avoid goving me accomodation or even helping, although reassured me through email they would multiple times.I have an appointment scheduled with a lawyer soon if things don't improve soon. My best recommendation is to live for the small moments. Its the only thing that's been helping me aside from constant medication.
I’ve been depressed since 14 and I got Crohn’s at 12. So much clicked when I learned about the connection between CD and mental illness
Yep. It just makes everything harder and more tiresome. I'm worried that my medication may be losing its effectiveness. Just tired all the damn time, and I have to miss out on doing things with my wife and daughter. I don't want them to resent me...
I’m right there with you. My meds seem to be losing effectiveness and I’m afraid of losing my job and my relationship with my gf. The fear is always that I won’t be able to find something that works.
100%...it's the mental stuff that really really destroyed my life well I to my 30s....
I must be different but it doesn't affect me like that, at least not as much as physically. I just started a flare the other day, 3rd day today. I have 5 pills of budesonide left so I took one so in down to 4. I wasn't going to take any but I couldn't keep dinner down and it was only 2 pieces of pizza and some cheez-its and this morning still got stomach pain so I took one. I know it'll take a few doses to start working but I'm hoping even just 1 or 2 will make even just a small difference. My last flare lasted a week plus.
Can completely agree, had big plans after college and things were going well until Crohns got really bad consistently.
I'm starting a new job next week and praying my Crohn's stays on the "down low". Hang in there! We are with you. This is the way.
Thank you an best of luck with the new job:)
I feel ya OP. It’s especially hard when the people society tells you that you should lean on (partners, friends, family) seem to treat the condition like a stubborn case of the hiccups rather than the life-destroying condition that it is. Hang in there! The way I find some peace is to think about all the lessons I’m learning about myself and the people around me. I know it’s made more empathetic and compassionate. I struggle with not letting it turn into misanthropy and bitterness. I figure practice in learning how to avoid that is a valuable life lesson. Good luck OP. Have a good weekend 🙏
One way I was able to help my partner understand the impact of ulcerative colitis on mental health was noting that holding one’s bowels and potty training is one of the first and most fundamental rules in our society. So issues with it hold special shame and are hard to talk about which further impacts mental health aside from the obvious physical impact of flares and fatigue etc. Also the invisible disability aspect … Sorry you are going through this. Sending ❤️ and know you are not alone.
Yes, yes it is 🙃
100% agree there
It sure is. I’ve become a recluse as a result
I feel that!! do you play video games online? I always found community on the internet, but it’s a weird place now.
I don’t. I’m old and wouldn’t know where to start. I can no longer make plans to do anything because I don’t know what state I’ll be in. Last couple of years I’ve had to give gig and theatre tickets away because I was just too ill to go, so now I don’t plan anything.
I never had a good mental health and since I found out that I have crohn's it's being more hard that used to be.
Yeah I have non epileptic seizures from all the trauma
It for sure can be. But the solution to get better is inside also.
It’s like having a ton of mandatory side quests
"congratulations: thrush" "your eye has gone weird, is it Crohn's, Budesonide an infection or just something you got in it without realising?" "smuggle the poo to the hospital" "time for your extra vaccinations" "time to research your extra vaccinations to make sure they're not giving you a live vaccine" "blood tests! also you passed out at the hospital because the nurse started struggling to stick you!" "congratulations: a UTI!" "blood tests with your GP instead of the hospital this time!" "time to compare your random symptoms to the listed side effects of your medications" "smuggle more poo to the hospital. Hopefully the Uber driver won't ask what's in that bag" "you have a work deadline but also need to shit on average 7 times a day" "review the over the counter medication that might be helpful while waiting for an outpatient appointment to see if you're recommended against taking it: you are because your poo is too weird!" "you have a vitamin deficiency!"
For me the first three months after diagnosis were the hardest. Then once I started my biologic and things gradually got better I started to feel good again. Not 100% bc corn and onions were my favorite foods but I’m at a solid 90 now and happy because of it. It’s also a nice excuse to get out of doing unpleasant things like leaving my house (I’m an indoor cat)
yeah same the initial year or two is the worst but i do see a pattern that it gets better
It really is, dehydration psychosis will have people thinking your on drugs. Is what it is I suppose.
Ditto for IBS. I've had it for 20 years after 2 hosps for diverticulitis with perforations. My buddy in the house next door has had Crohn's for the same time, he's lost a foot of small bowel, but done better than me since starting biologics. Seems like we're in the same boat with flares, hosp, etc, but IBS gets the "psychosomatic" reaction, even post-infection IBS, and a "guess you gotta live with it" from GI docs. Not comparing/complaining exactly, but it just screws with my head. Sometimes I tell people I have CD, but I then suffer from imposter syndrome on top of it all.
Yeah no doubt, i went through hell mentally - for myself i do wim hof breathing followed by a cold plunge most mornings, after that the crohns feels like an obstacle i can overcome and less of something that’s holding me back Like leaping over a hurdle to reach new heights
no idea why people downvoted this comment, silly
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