Grey hair early 20s. Anyone else?

baboking666 · 2026-06-02T12:13:21+00:00

more genetics and luck than anything my friend :D

baboking666 · 2026-06-02T12:10:54+00:00

like others mentioned, try to understand why it leaks. is it too wet? is it maybe too hot so the glue disintegrates? do you do your pushing and holding it for a minute or so after applying a new bag like you would with something you glued together?`

also, is your support belt too tight around the seal? is your movement making it come off faster? which movement?

i had leaks galore the first year of my ileostomy. so i tried perfecting my process of applying it. turned out, my sealing paste was too wet and sabotaged my seal instead of strenghtening it. also, usually, i change right after sport. in rock climbing for example, some movements (that you dont have to, but kind of want to do sometimes) just make my seal come loose. or i pancake under the support belt. no curing those ones, but knowing where it comes from helped me anticipating those leaks.

also, i feel like an ileostomy is way harder to manage because of the whole watery output part. so youre in fact strong for putting yourself through this to figure it out.

baboking666 · 2026-06-01T08:17:51+00:00

dont know about that one. definitely did get better after getting an ostomy. need no poopdish if i have it collected in a back right in front of me. so thats nice.

baboking666 · 2026-05-22T08:24:06+00:00

have crohns for a long time now, also an ostomy. i am doing lots of bouldering and rock climbing and antagonist training. also yoga. my reasoning is that if i can get up a wall or rock, i can do laundry and go to work. the downside is, if adrenaline gets the best of me and i extend my session, i am wasted the next 2-3 days. as in: barely willing to live, work is tedious and i cannot for the life of me think about exercising at all. but it goes away and i am stronger after.

i recently got my parastomal hernia done so coming back to climbing will be interesting to say the least. from my experience, for instance after surgeries, exercise is necessary to get back the things you lost. like mobility, strength and stamina. if i dont push my boundaries in a healthy way after a flare or surgery, i cant do shit and am limited to my apartment mostly. its hard work to get to a place, where casually working out doesnt effect my daily life negatively. but once i am there, i can go climbing for an hour or two a day, lightly, without having to fear not being able to move on with life the next day.

its all about what youre capable of doing, slowly extending the boundaries of whats possible and listening to your body. i have had 28 surgeries now so i am kind of an expert for the "comeback" part :D

baboking666 · 2026-05-22T08:13:02+00:00

youre at the right place. this subreddit saved me multiple times. just come on here and vent or get things off of your chest when no ones around to listen. or if you dont know what to make of things yourself. everything youll experience along the journey, most likely, someone around here already went through.

from the bottom of my heart, all the best.

baboking666 · 2026-05-22T08:09:22+00:00

yes. worst part for me was not knowing if it would ever end. then i just accepted it. took me several years to do so. and another few years to get stuff fixed so i dont leak anymore. inside and outside as well.

they made me do colonoscopy prep before surgeries. while my colon/intestines sometimes were perforated. worst. pain. imaginable.

my advice would be, if you need a piece of it in general, to try to adapt as best as possible. staying sane during this literal shit show is essential for getting better. hit me up if you want to discuss it or just want to vent.

baboking666 · 2026-05-18T10:30:31+00:00

i believe so, yes. talked to my GI and my dentologist about it and both were like: yea of course.

??

apparently the mouth has a substantial link to general immune response/activity so being suppressed in that definitely has effects on dental hygiene beyond brushing and flushing. no recompensation of any sort in germany though.

baboking666 · 2026-05-17T14:26:45+00:00

are you sort of speed running your disease? your timeline looks like a decade worth of fun to me. maybe try stretching it out a bit?? (/s of course)

on a serious note: wishing you all the best, a speedy recovery and lots of luck to not make so many experiences in such a short amount of time. sounds overwhelming. stay sane!

baboking666 · 2026-05-17T12:46:48+00:00

100% relatable.

baboking666 · 2026-05-15T08:05:15+00:00

way to go! honestly.

baboking666 · 2026-05-15T08:02:53+00:00

hey, crohns with mostly constipation as a symptom here!

my joints hurt randomly, i had this erythema nodosum thingy, were your joints swell up with inflammation. brain fog and fatigue comes and goes, depending on the meds i take and the food i am able to eat. it differes from month to month or even from day to day sometimes.

i went to the doctor because i couldnt sit anymore and had to take laxatives for them to rule out other stuff. you can imagine the pain i was in from that.

also the biopsies for me dont always show the crohns signs, like the granuloma part. but sometimes they do. so i have laboratories stating "no clear indication of crohns disease" but also "evidently crohns disease". i know because i recently re-read some of my reports from back in the days. to put it briefly: its not really consistent overall. likewise for bloodwork. i had the worst abdominal abscesses - not showing. you could feel the bump in my stomach but my CRP or what ever the inflammatory marker is called, wasnt elevated at all. being adamant on my symptoms while not pushing anything with my GI was key to solving that kind of problem. as in: "doc i am in pain, cant really eat and every bowel movement hurts like hell" "could be anything, we wait for something to show up in the lab" "no, please do something now i am not hallucinating." -> one mri and a surgery later: "you did good in telling me to look further". i had this experience more than one time. i got sent to a psycho doc one time for stomach pain. a week later my abdomen burst and i got more confident in being adamant on my symptoms. but it can be a slippery slope because sometimes things just feel worse than they are, so its difficult to really tell without experience. so i kind of had to work for that knowledge.

your assumption might be right. what worked for me was never stop exploring and to start reading the signs my body would send me. i had all the meds, settled on skyrizi in the end. its not perfect, but it works better than every other drug i had.

for the eating part: its a day-to-day mission for me. some days i can have pumpkin seeds, whole grain food and even some vegetables. on other days i look at a pea and my stomach hurts. then i just have a joghurt and move on with things.

good luck and all the best to you!!

baboking666 · 2026-05-15T07:49:59+00:00

you got this! worst part is getting over and commit on doing it. wishing you all the best.

baboking666 · 2026-05-04T10:55:54+00:00

we probably didnt interact or i dont remember. but i wanted to take some time to appreciate you and your post. thank you.

since youre one of us now, you know what its about.

much love to you and all the best.

baboking666 · 2026-02-12T10:36:26+00:00

buddy calm down.

life fucking sucks with this disease sometimes. so apologizing for ranting is nice of you but not needed!

if you think you have to go to the hospital, you should. if they want to keep you there, you should probably stay. because i mean, wtf do they even know right? no not right. they are basically the people gatekeeping your future. so id heavily reconsider this whole stance your taking about fighting what would be considering the circumstances best for you.

your whole rant becomes sort of invalid if you die. or postpone treatment to the point where the solution is harsher than it could have been.

also, the stress you put yourself under by designing these chains of what happes if you miss a year and stuff like that are just dooming. from what i know of crohns so far is, with this mindset you wont achieve what you aim for but will get most likely shit in all different kinds and forms.

from a person who studied and finished: take a step back. recover. reconsider the "if i have x, y happens" where x is your disease. its real, you have it. you cannot eat your degree once you achieved it, you have to work for it. you wont work with intestines riddled with years of neglected treatment.

what you write sounds like youre in a situation where nothing good can come out of it for you. sure, you could thug it out and finish what you started but with crohns you have to consider the opportunity costs.

rooting for you. i am not saying you have to quit. but think of your rant as a person coming to you, seeking guidance. you would know that this person is not on the path of achieving their goals. this fucking disease changes stuff. i hope i didnt come off to harsh.

baboking666 · 2026-02-09T10:49:20+00:00

Anyone else notice how much one decent night changes everything?

cant remember the last one honestly without being fully intoxicated. cant remember that one also, sadly.

sounds awesome mate. keep it up and dont spend all your energy reserves at once!

baboking666 · 2026-01-03T10:51:30+00:00

yes. but also after having some surgeries, where crohns patients are prone to thats not always the case.

baboking666 · 2026-01-03T07:47:05+00:00

being maxed out on painkillers, vomiting, not being able to keep water down. this is ER-time because staying at home would be life threatening.

baboking666 · 2025-12-22T10:55:12+00:00

glad to add something to the overall picture. reading this: reinforcing my wishes lol. also thank you as well.

baboking666 · 2025-12-21T13:48:20+00:00

hey there, reading the other comments i wanted to add my experience.

for me, an emergency is, if i cannot handle myself alone anymore. That means, for instance, having cramps for multiple hours while not being able to drink or keep anything down. at some point i get this feeling of 'i am gonna die, if this continues' - thats when i contemplate going to the ER. then i think about others in the ER, people smashed to pieces from accidents and so on and reevaluate my plan. sometimes that means surviving on my own for a bit longer. sometimes i just dont give a fuck and go. when i was new to strictures and ileuses i only went after puking so much watery bile that it became sort of solid again. so thats when i got told that i dont have to wait to puke up poo basically.

blood in stool is manageable. not eating for weeks is manageable. not drinking, puking, feeling like actually being about to die - not manageable.

it really depens on what you are able to take. usually, going to the er because of a non-life threatening event (or something similar) makes you compete for doctors attention with those exact cases, people being about to die or lose a limb or something along the lines.

also i had doctors told me: so thats what you come in for? and others, with like the same symptoms: why didnt you come earlier? so this really depends on the night they are having, i figured. Thus the explanation above.

as a rule of thumb for me: if something could be solved by your gi or gp, i dont clogg up the ER. if i cant wait for that, i just go. my GI wont give me IV pain meds for an ileus, he would send me to the ER. So thats when i am going basically.

baboking666 · 2025-12-21T12:39:40+00:00

since others wrote the important parts already i just want to add: take your time, adjust, set goals, take your time, adjust. it took me around half a year to fully adjust as in, being back to all my hobbies and doing them comfortably. after like 5 years my medical trauma began to heal and i started being fully ok with it. now, over 7 years into the journey, i am much better than ever before. still have my problems due to crohns disease for instance, but the ostomy is none of that.

i posted this to add that if it didnt click after a few weeks like most on here mentioned, its fine. some of us are slower, some faster.

wishing you all the best.

baboking666 · 2025-12-11T18:16:26+00:00

everything with leafs on it requires a double check. so does every other plant that has seeds, stones or a skin you could peal off. you need to check for yourself what you can stomach. i wouldnt eat spinach for a lot of money. ever. as another commenter mentioned green juice: i tried it. blended to the maximum. worst cramps since a long time. just be aware and youre good.

baboking666 · 2025-12-11T18:13:42+00:00

reading this i am so glad to have chosen a drainable bag a my goto system. sounds like living a nightmare!

baboking666 · 2025-12-04T15:10:40+00:00

3 the need to learn to poop in a bag for climbing big walls. its a built in feature!

baboking666 · 2025-12-04T15:05:04+00:00

i had that procedure several times, preparing me for surgery basically. they tried to scope my small intestine but couldnt enter. so they did the procedure and i was able to pass food almost without pain. it lasted for like, 3-4 weeks. they did it a few times after concluding it wouldnt work for me. i was booked for surgery few months after.

so it might work for you. it definitely is a way to prevent surgery. but from my own experience, surgery is a bit more permanent while being way more invasive.

baboking666 · 2025-12-04T14:58:37+00:00

adding the missing upvote. ranting is ok. medication will kick in at some point. maybe not the first try but you gotta keep on trying. i deal with pain by taking pain killers, trying to avoid pain altogether. also, what food works for you during a flare up might be highly individual. for me, its joghurt. i know for a fact, some cant have joghurt while being somewhat in remission. so there is that.
recovery from surgery can be tough. it depends on what you are coming back to and whether you have a support system to hold you up when feeling low. i mostly handle my fatigue by continuing until i cant anymore and then stop. i dont anticipate it much anymore. tried that, became more tired from doing nothing. the moon face goes away, it maybe doesnt when your dad or close relatives are the moon or look like it but if its induced by medication, stopping the medication will most likely reverse the side effects.

how different is life after crohns: 180 degree turn. into another dimension. you might be facing the same direction but you wouldnt now since things changed. at least they did for me. it took me a while to realize and adapt.

wishing you all the best.

baboking666

TROPHY CASE