#Ulcerative colitis

[desultory-suggestions]

Sending love to everyone who has health issues or chronic pain in parts of your body that aren’t usually socially acceptable to talk about. It’s frustrating to feel like you can never explain your pain to someone because it’s TMI and to feel like you have to hide it. Your pain is nothing to be ashamed of. I see you, and I’m sending you support and strength.

[genderqueerdykes]

i just think it's bullshit that alternative meats, milks, eggs, breads, and other foods are prohibitively expensive. like i don't know how to tell people that not everyone who eats vegan or vegetarian is choosing to eat that way because of their moral beliefs- a lot of people are eating these foods because they have food allergies or intolerances, or have other gastrointestinal issues

i don't have a choice. it's downright cruel to make these different options more expensive. there is no one size fits all diet- every single person needs a unique diet and some folks literally have no choice but to utilize these substitutes. some vegetarians cant digest soy. some vegetarians can't eat beans. i also don't know how to tell you that not every vegetarian or vegan can ingest raw vegetables and fruits, or even cooked ones, for that matter

there are a LOT of health conditions like irritable bowel syndrome, gastroparesis, crohns disease, and other gastrointestinal issues that can cause a person to become very sick or even die if they ingest too much raw plant matter, especially vegetables high in fiber. when these fibers cannot be broken down by a person's digestive system, they can form blockages in the intestines and kill people. not every person on this planet benefits from eating a lot of leafy greans. some people are allergic to chlorophyll. some people are allergic to citric acid. diabetic people have to be careful with certain vegetables and fruits causing spikes or dips in blood sugar, and many people with diabetes end up with gastroparesis, or similar gut issues. there are a lot of reasons why people can't just switch to a diet of salads and fruit smoothies every day.

alternative foods need to be available to everyone, regardless of how much income they make. having safer alternative foods should not be relegated to the rich. these are not just being consumed by spiritual white moms on instagram. these foods need to be accessed by disabled people all over the world.

[thequietesthing]

the incredible harsh quiet revelation that you have when you are diagnosed with chronic illness(es) is that you will never be healthy again. I don't think able bodied people are able to understand what it means to just resign to the fact that your life is not just yours anymore. you share it with a weight that will be with you until you are gone from this world.

[thatchronicfeeling]

Reminder that it's less than a month before pharmacies will be closed for end-of-year holidays. Make sure that you will have enough medications to see you into the new year.

[camryn-aisling]

Last July, I had my first colonoscopy at the age of 26. I was suffering from dysregularity, frequent diarrhea, and cramping. At the time, the diagnosis was post-infection irritable bowel syndrome caused by some form of infectious colitis.

Unfortunately, over the course of the following year, my symptoms gradually intensified and eventually became largely unresponsive to lifestyle-change-based treatment. It's gotten to the point that, for the past two months, I've been having to rely on max dose immodium to maintaining a semblance of normality in the bathroom.

Thinking that perhaps he had misdiagnosed ulcerative colitis, my gastroenterologist prescribed a course of budesonide. Sadly, it was completely ineffectual. As such, I was scheduled for yet another colonoscopy.

A few days ago, on June 20th, less than a year after my first one, I had the second colonoscopy of my life. Many more biopsies were taken this time. I haven't yet gotten the results. Frankly, I'm terrified of what they might find.

To add insult to injury, my insurance has a massive deductible, so I'm on the hook financially for pretty much the entire procedure.

I don't yet know what the total cost will be. Last time, it was about five thousand dollars. With all the extra biopsies this time, it might be a bit more, but I won't know what the pathology bill is for a while.

I've been running a fundraising campaign on other sites since June 11th and have managed to raise a decent amount of money.

Unfortunately, donations seem to have stalled at $2,987.18, a little over $2,000 short of our $5,000 goal.

Thus, I have come to beseech thee, tumblr. I need thy aid. Please help me however you can. For those of you who can afford to spare some money, direct contributions are greatly and sincerely appreciated. If you aren't able to donate, then I ask that you please share this post with as many friends, associates, and acquaintances as you can.

If you'd like to donate, you can use either paypal or cashapp:

https://paypal.me/camrynaisling (please ignore the deadname)

https://cash.app/$CamrynAisling

Thank you so much for taking the time to read this.

Let's go!

[crippl-hacker]

I’ve been making patches again now that I’m feeling better! I love how cool my vest and pants are turning out! My favorite patch is the first one - a disabled transgender symbol in the colors of the CCFA for my ulcerative colitis.

I also get called weird a lot so I figured I would embrace it and make a patch showing the real reasons I get called that (it’s because I love bugs).

[lousydrawingsforgoodpeople]

[snowberrydream]

Stoma gave Käärijä a new life - english translation of an  interview for Finnilco ry 8.5.2023

Translator’s note:

If you’ve been wondering about that scar on Finland’s favorite green boi’s belly …this is about that. (Because why be cha cha cha when you can be sad sad sad and read about how he was like a week away from death at one point in his life. Though I guess it kinda fits the post-ESC depression, really)

Okay, now some actual notes about the text. So, Finnilco is a Finnish organisation for patients with stomas and the like, so the interview talks a lot about medical stuff and is clearly geared towards people with similar health issues. It might not be as ”entertaining” as all the other stuff you might’ve seen about him recently, but I recommend reading it anyways, as I feel it gives a lot of insight to who Käärijä is as a person. It hasn’t always been just crazy and party for him.

There is a lot of medical vocabulary in this, and I’ve done some intense googling and wikipedia-ing to figure out what the correct terms are, but I can only hope they are right. Trying to understand whether things are synonymous with each other or completely different things is kinda hard when you have zero knowledge about the subject. I deeply apologize for any mistakes that might occur.

I’ve also done some minor tweaks to the text (like cut down on repeating his last name in nearly every sentence) for the sake of easier reading, as the style of it is quite academic and ”dry”, but overall I’ve kept as close to the original as I could.

link to the original finnish interview:https://www.finnilco.fi/post/avanne-antoi-k%C3%A4%C3%A4rij%C3%A4lle-uuden-el%C3%A4m%C3%A4n

***

Jere Pöyhönen, known by his artist name Käärijä, is the finnish representative in the Eurovision 2023 Song Contest. The artist, known for his style and energetic live-performances, had his youth shadowed by serious health issues, to which he even almost lost his life.

By his own words Pöyhönen is still just a normal guy. Vantaa-born Pöyhönen was diagnosed with colitis ulcerosa, a type of imflammatory bowel disease, when he was young. As the disease got worse, he had to eventually have an emergency surgery, where he got a temporary stoma. Later the stoma was removed and replaced with a J-pouch (ileo-anal pouch), a reservoir pouch formed from the end of his small intestine.  Currently in good health, he wants to be open about his disease so that he could offer peer support to others battling with the same issues.

- I am truly fine with this, I am not ashamed about it, on the contrary, I want to tell about this to everyone. I hope that by sharing my experience I could help someone else, Pöyhönen says with a smile.

Symptoms lead to an emergency operation

When Pöyhönen was at ninth grade, he was diagnosed with rectal inflammation. The inflammation was treated with suppository and oral medication, and it got better. When he was 18, the symptoms returned. For a year he was on an elimination diet that kept the inflammation under control, but eventually his condition got worse again, and in the end his entire colon got inflamed. Several treatments were attempted, but none worked. At the worst point Pöyhönen weighed only 49 kg, and his hemoglobin was swaying between 54-56.

- I was still somewhat right in the head, though I was feeling dizzy and kept bumping into bathroom doors. It was quite a rough time in every way, he reminisces. He defecated blood multiple times a day and was practically bedridden, his parents had to feed him. But nothing seemed to help. Pöyhönen remembers how his mother was crying by his bedside. Back then he had blood tests done regularly to control his condition, and after one time he got a call and was told that his hemoglobin was so low that he needed to be treated urgently. After the call his dad went to start the car and drove him straight to the hospital.

At the hospital, an emergency surgery awaited. While waiting for his turn he wondered about what would happen to him in the surgery, afraid that he’d need a stoma. At the same time he thought that the most important thing was to stay alive.

- Do whatever you have to, as long as I’ll get better, he remembers thinking before going in. A stoma had been suggested to him already before, but until then he hadn’t been able to accept it and had tried to manage by other means. Afterwards he has been thinking that the fear was due to the issue being so unknown. He didn’t know much about stomas and had never seen anyone with one.

- It was a tough spot. I wondered how the stoma would affect my life and me as a person. How would I look like, what would happen to my sexuality. Those kind of things scared me the most about it, he recalls.

Life as a young person with a stoma

The first thing he did after waking from the surgery was feeling his stomach and the collection bag.

- It was a weird feeling, confusing. But at the same time I felt just immense calmness. The root of the problem, the inflamed colon had been removed entirely. Confusion soon turned into acceptance.

- I wasn’t sad about it for that long, on the contrary. When it sank in that I was still alive, the stoma felt like a pretty small thing, considering everything. It was a happy thing that I had it.

Despite feeling thankful about the stoma, it was still a shock at the beginning.

- When I was taken to get a shower for the first time and I saw it, I nearly fainted, he laughs.

The emergency surgery was lifesaving for Pöyhönen. if it hadn’t been done, the inflammation could’ve spread from his bowel to the rest of the body within weeks, or even days. So Pöyhönen came really close to death, but thanks to the stoma he got to continue living.

– Getting the stoma gave me a second chance. A chance that not everyone gets to have. But if they get it, they should take the offer with a smile.

Pöyhönen tells that he got used to living with the stoma quite quickly. But it required him to adjust his own attitude – he had to accept the situation as it was. Luckily he was able to enjoy life even with the stoma

- When I had it, I did all the same stuff as other people. I did sports, went to restaurants, I truly lived a really ordinary life.

Of course he faced also some difficult times. At the time 18 years old Pöyhönen was in a relationship, and he tells that at first things relating to sexuality felt difficult.

- It was indeed nerve-racking. Overall, you are only starting to try out stuff at that age, and then there is the stoma on top of it all.

But one thing was clear for him already at the time: 

- If the other party in the relationship doesn’t accept your situation or the stoma, then that person isn’t worthy of you.

From stoma to J-pouch

Pöyhönen lived with the stoma for five months until it was replaced with a j-pouch. In the beginning the pouch got clogged, but he didn’t tell about it right away. He was fed up with spending his time in a hospital and wanted to live a normal life. When he finally told about the clogging, the issue was fixed and the difficulties eased.

- I’ve done all the normal stuff. I’ve travelled around the world, done and eaten the same things as everyone else. 

Pöyhönen has had the j-pouch for almost eight years now. He hasn’t had any serious complications, but occasionally there’s been some milder issues.

- Sometimes there’s been minor inflammation or bleeding. Once I went to have an endoscopy after there was more blood and I got frightened. Old fears about how things were in the past rose to the surface, Pöyhönen tells.

Overall he is feeling positive about everything.

– At the moment I’m really contented with my situation, and I wouldn’t change anything. I wouldn’t even want that colon back, as this all has become a part of my identity, he says.

 Music as a part of life

Music has always meant a lot for Jere Pöyhönen. Yet it wasn’t always obvious that it would turn into a career.

While spending his time in hospitals, listening to music comforted him and gave him hope. Laying in a hospital bed with an IV drip next to him, Pöyhönen also wrote his own songs. If other patients wondered about his doings, he simply answered that he was making music.

During his time in hospital he realized that life might be short. He decided that if he’d be alive and healthy again after the emergency surgery, he’d go and try doing music for real and with everything he had. Of course, at the time he had no idea how far that decision would eventually bring him.

- My values became clearer there in the hospital. I realized what are the things I love and what is truly important for me. One of those things is music, and doing that was what I set my mind on to. 

Pöyhönen tells that he especially enjoys doing live shows, because then he gets to entertain people. He feels he is at his best while performing.

Daily life of an artist

Nowadays health issues don’t cause much trouble in Pöyhönen’s everyday life as an artist, but he still needs to take good care of his body. At gigs he must pay extra attention to what he drinks and eats, when and how much. He is sweating a lot while performing on stage, and to balance that he drinks salt/mineral water. The excitement also affects his bodily functions, and during stressful moments he’ll need to use the bathroom more often. But he tells that he doesn’t really get nervous about doing gigs anymore. 

However, the approaching Eurovision song contest is a kind of gig he has never experienced before. The event is big and the place as well as the proceedings are all new to him. Despite all that, Pöyhönen seems trustful.

- I don’t know how it is going to be like in there, but I don’t think I’ll have any problems. His confidence relies both on his general attitude and that over the years he has learned to know the way his body functions quite precisely. He knows when his energy levels are getting low and when he needs to drink or eat.

 Family’s support has been important

When Pöyhönen was sick, the support from his family was what helped him to keep going. Thanks to his family he has always felt valued and loved.

– The contribution from my parents has been enormous. I will never be able to repay their efforts, other than by being alive.

Pöyhönen tells how his parents gave him their full support while he was sick.

- When I first got diagnosed with the rectal inflammation, they wanted to figure out what could cause it right away. They delved deep into the matter, made phone calls and searched for information from the internet.

His parents drove him to his tests and put their time and money into finding out what was going on. The financial support made it possible that he could have all the different tests done despite them costing a lot.

 Stories from peers bring hope

Though his family and friends have been there for him, they haven’t been able to offer him peer support. When he was sick, Pöyhönen did sometimes feel very alone with his issue.

- I didn’t know anyone else in a similar situation as myself. I didn’t get to talk face to face with peers, he says. He did search for peer stories from internet, but people online were usually anonymous, and though he gained information through it, he was longing for human connection and faces to relate to. Lucky for him, an acquaintance of his was in the hospital at the same time as him due to a similar issue. They became friends and messaged daily through Facebook, asking each other about the number of times they went to bathroom and the like.

 Pöyhönen says that those kind of discussions with a peer were a big help. It was important to hear that someone else was experiencing similar things as him. An ice hockey player Teemu Ramstedt gave him another face to relate to.

– It gave me lot of faith to see someone else with the same stuff going on as me. That an athlete, a hockey player, had been dealing with the same issues, he tells.

Attitude and dreams helping to go forward

While being sick Pöyhönen gained strength from daydreaming and steering his thoughts towards future.

- I kept thinking that at some point I’ll have good moments with my family and friends again. That one day I’ll be healthy and able to feel happy about everything. In the end it was quite simple things that helped, and also humor helped to get through it all. 

Pöyhönen tells that he has been a joker since he was young, and when he was unwell, he also used humor to deal with the difficult things. But there was also something else hidden underneath the jokes.

- Maybe all the joking was also a survival tactic. A way to escape from it all. In the beginning I didn’t want to accept the reality, even though I tried to convince myself that I had done so. 

Pöyhönen tells that the songs he used to listen to while in hospital were difficult to listen to after he got out of there. Also some familiar places would bring up old memories in an unpleasant way.

But in the end, time heals, and years later those same songs are back on his regular playlist. Now they just uplift his mood and push him forward.

 It’s worth it to open up

When Pöyhönen was sick, he didn’t always tell about his symptoms to his parents or the hospital staff right away. One reason that he mentions was shame. At first he himself didn’t want to believe it to be real when he first saw blood down in the toilet.

- But when it happened again, I realized that this might not be something that would just go away. That it might be something more serious that should be taken care of, he recalls.

And to his younger self, or someone else in a similar situation he would give the advice that you should be open about your problems. He also encourages to try and find some peer support, as he himself was left without it for the most part. Though the bit he did get was a big relieving factor..

– When a person suffers from an illness, the most important thing really is that you are mentally in a good condition. If you are feeling down, the healing process will be really hard, he points out.

At the moment he dreams about that he and the people closest to him would stay as healthy as possible. He wishes that he would get to do things he enjoys in his life and to spend time with the people that are important to him. 

To the readers of Finnilco he sends the following message:

– Go forward with humility, but don’t be too meek either. Love yourself, your body and mind. Be well, and if problems arise, react to them right away. Enjoy life and do things that make you happy.

***

[nightmarekilljoy]

Never thought this would happen but thought that this was my normal up until last year. I thought it was my normal that mild infections sent me to the hospital. I thought it was my normal to have me struggle with digestion, going to the bathroom, eating (not in an ed sort of way), cramps, back pain, joint pain, bone pain, nose bleeds, dizziness, nausea, bladder pain, tinnitus, hand tremors, near fainting experiences, fainting, bleeding, shooting pain, stabbing pain, weak legs, malabsorption, abnormal blood test.

No. Its not normal. It should not be normal.

I am angry.

I am angry at everyone who told me to just exercise, to just eat healthy, to just drink tea, to just try yoga, to just try anything that has never helped me.

I am angry at every misdiagnosis. At every hospital visit spent in pain while doctors did nothing to prevent that pain. At every doctor that said I was too young. At every doctor that dismissed even the concerns of my mother who knew my problems since birth. At every hospital stay spent in pain and without conclusive diagnosis.

I am angry at every family member who called me an attention seeker, who told me my pain was all in my head, who told me my pain was only minor and that everyone else's pain is more important because they're older and I'm young and don't know anything.

I am angry. Terribly angry. It takes too long to be taken seriously and to get a diagnosis. My pain shouldn't last this long. I should have got treatment as a child. I should have been treated.

Its not normal to be in pain every day. Please take care of yourselves.

-Amber (she/they/it/star/shine/rot)

[mitamicah]

Happy disability pride month everybody!! ❤️💛🤍💙💚

To those who might not know Jere has been very vocal about his experience with IBD more specifically ulcerative colitis that resulted in him getting a lifesaving surgery at 19 leaving him with his two surgical scars on his stomach. Here's a few links to articles if you want to know more (x) (x). I'd also like to link the podcast interview where I first learned about his experience (starts at 11.10) since it touched me hearing him open up about for it for what sounded like the first time after he himself brought it up in such an authentic manner.

Since learning about his disability around april-may I have felt an even stronger connection to him. Although I do not have IBD myself, I just find his honestly, vulnerability and authenticity so inspiring that I could not help not to love him and and so the real brainrot began

For this reason drawing him for disability pride has been on my mind almost as long so I hope you enjoy the outcome - stay strong everybody and you are amazing just as you are, with or without disabilities

With regards, your fellow autistic Kääryle (Käärijä fan) 💚

[the-swift-tricker]

well i actually went to the hospital earlier this week after dealing with chronic diarrhea and acute dizziness for the past couple of months and i ended up staying there for two and a half days! turns out i was borderline dangerously low on blood and had to have four blood transfusions! the reason being is there was microscopic bleeding coming through the diarrhea that i didn't know about! anyways after a chest x-ray, a ct scan, multiple tests, and a colonoscopy, i got diagnosed with ulcerative colitis! and while you'd think that would be something to get overwhelmed and feel downtrodden about, i just can't get over the elation of finally getting a diagnosis! cause it turns out that it's also probably the source of the inflammation that's been causing my chronic pain! not what i was expecting to come out of all this but i'm so fucking happy it's unreal

[ghosty206]

Having an autoimmune disease is so exhausting and I wish I could have like one hour of energy

[hallmarkchrismasmovie]

so ive been having a flare up for 3 whole weeks now, symptoms include:

intense upper abdominal pain after eating

vomiting most solids*

intense back pain at the same height as the stomach pain but at different times

headaches

fevers

dizziness

fatigue

weight loss

*this has lessened since i went to the hospital a week ago and they gave me a new round of pantaparazole (which ive been on before because i have a gerd diagnosis)

ive had flare ups before with similar symptoms but this level of vomiting is new and its never gone on this long. the hospital confirmed its nothing viral and nothing super visible like a stomach bleed or something with my kidneys. does this seem familiar to anyone?

i should note that my doctor is adament its not crohns or colitis because of the stool tests shes done. ive had a colonoscopy, a gastroscopy, and a ct and the only thing they found was enlarged lymph nodes in my large intestine and acid reflux burns in my esophagus.

[meshaamem-li]

weird thing about chronic illness is how you're already used to the pains and the shit symptoms so you barely complain about them because "ofc that's gonna happen it's part of the Shit Disease", so the most impactful things are the privileges.

I remember I used to complain a lot about my weird diet as a teenager, I was like "woe is me, I have to eat quinoa and mashed potatoes and my mom won't buy ketchup or order pizza anymore" and my "friends" would roll their eyes and say there are real issues in life, and I'll just think "yeah well I can't complain to you about shitting blood and nutritional deficiencies now, can I?"

[thatchronicfeeling]

July is Disability Pride Month

Let’s celebrate by keeping disabled people ALIVE and SAFE.

Want to know how you can help?

WEAR A MASK. 

(FFP2/3 or N95 give best protection, especially the ones that fasten behind your head)

[hussyknee]

I'm so fucking mad.

Yesterday I took 50mg of Atomoxetine (Strattera) out of sheer frustration instead of my prescribed 30mg which was doing nothing.

And then...I was like "get up" and I would get up. "Go find the electricity bill" and went and found the electricity bill. "Sort through all the mail and organise it" and just. Fucking. Did it. No getting stuck for half an hour and spiralling in anxiety because my executive commands weren't going through.

I went to the hospital and begged those fuckers to increase my dosage and spent half an hour trying to convince them that this is clearly my ADHD symptoms being exacerbated by anxiety that's fucking me up. They refused, said "Oh, but anyone would find it difficult to function in your situation", and increased my Venlafaxine (Effexor) instead, although that fuckin plateaus any further than the dosage I already take. My primary doc knows this, but I have better luck catching Bigfoot than her at NHSL anymore so I keep having to tussle with the junior dipshits.

Granted I seem to have overshot a bit, because I spent a while vibrating into the fifth dimension. Felt like I'd had six cups of coffee and needed to do three things at once. Perhaps I should have attempted 40mg first. But 50mg very much did catapult me out of this neverending rut.

WEEKS OF BEING TRAPPED BY THE STATIC IN MY BRAIN LIKE A ROOMBA ON A RUG. I couldn't get out of bed, eat on time, shower, make my bed, do my laundry, go to bed. The simplest fucking tasks like pushing a boulder uphill with a stick. Sitting on the bed doomscrolling and tearing the soles of my feet into strips so bloody that it hurt to walk. I don't pick at my feet anymore! Didn't even realize I hadn't until the end of yesterday. This is the first time I've stopped in months. I stock up on band-aids and keep them next to my bed because I usually bleed in about three places within a day. And I pick the scabs off the still-healing wounds. All stopped by 20mg more of Strattera!!!

In other medication fuckery, I stopped the anti-inflammatory meds I was taking for my back because 1) the total cost of my meds was getting insane and 2) I haven't been in pain the last two months. I looked up whether there were side effects for long-term use of NSAIDs and found that using any of them with Venlafaxine increases the chance of gastrointestinal bleeding?? The way I've been having all this time?? Was my rheumatologist ever gonna tell me?? I'm just so used to flares, so fogged in my head and so relatively pain-free that I didn't especially note it. Turns out– the only reason I haven't been in pain is because I was taking the fucking anti-inflammatories. Imagine that! So I can either take Venlafaxine (which I cherish like a child regardless of the wrath-of-God withdrawal any time I miss a single dose) or I can take NSAIDs??

*googles anti-inflammatory meds other than NSAIDs*

Internet: "eat pineapple idk. have you tried tumeric?"

I hate my life.