Press J to jump to the feed. Press question mark to learn the rest of the keyboard shortcuts
View
34
Posted by
U.C. 2009, J-Pouch 2018
2 months ago
Moderator of r/CrohnsDiseaseStickied post

Hey everyone, we wanted to try something new here by creating a central list of ways we can all connect outside of reddit. That could mean social media, personal blogs, chat rooms, YouTube channels, gamer tags, etc.

Go ahead and comment here and I’ll add them to the list!

Chat

Twitter

Instagram

34
22 comments
13
13
2 comments
105

pretty sure my intestines are fully closed since i cant stop vomiting and im in severe pain . i want to go to the hospital but the wait (usually 7 hrs before i even get put into mind for an iv ) is unbearable. i want to be better but it doesnt seem to be close in sight.

nothing new just wanted to vent.

105
16 comments
15

Hi, My name is Ørjan (Norwegian but you can call me Oliver)

I've had Crohns since i was 9 years old and i am now 21, i went in and out of hospitals for over 2 years being told that it's nothing but the flu etc, having to explain how i feel and how everything went downwards for me for a long time is something a 9 yr old shouldn't have to do. They ended up finding out that i had Crohns when i was 11 years old. I started with some medication that made me go into shock therefor i ended up getting Humira pretty fast. I also got prednisolon, but i went on it for way to long and ended up with a weight of around 80kg at an age of 12 and lost most of my friends because you know how children in that age can be. After a while things started to get better, atleast when it came to the crohns. I lost a lot of weight and became more active again.

Fast forward to about 1 and a half year ago:

Everything came flooding back, not being able to sleep, always having to go to the bathroom and massive spikes where i just wanted to go to an early grave, ended right back at the hospital went through surgery and removed about 15cm of my 'bowels'(not sure what the English word for it is so i might be wrong). That helped for some months but then the pain came back anyhow, now to this day i go in and out of the hospital trying to find out what is wrong with me but nothing seems to work. Tried going on diets, tried multiple medications that didn't work. Now they want me to take prednisolon again but after what happened last time i am terrified of that medication so i try everything to not end up having to take it again.

Now this interferes with basically everything in my life (Work,Sleep,Relationship and so on). Luckily there is a good welfare system in place in Norway so i don't go without money the weeks on end i cannot attend because of my pain and frequent bathroom visits. But i'm not cut out to just sit at home either, it breaks me down having to sit home and do nothing all the time.


So my question to you all is, how do you deal with all this when it's at the worst? Got any tips or ideas that can help me get through the day?

15
11 comments
3

So i’ve had cd for 2 years, a mild case of it but one that FRAUSTRATES ME IS MULTIPLE BOWEL MOVEMENTS & it seems like sometimes my bowels dont fully empty!!! As a gay man, this is more frustrating especially when it gets in the way of sex & cleaning out with enema’s brings more stuff out that should have come out earlier! Any help, this is seriously driving me up the wall, its like sometimes i feel these cramp attacks & then i gotta go crap, its annoying also some foods make me real gassy & feel like their rotting in my intestines

3
2 comments
5

Hi all,

Is it normal for more of your crohn's symptoms to return as you taper off of prednisone? I started at 40mg about a month and a half ago and am down to 15mg now. I started to notice last week at 17.5mg some of the symptoms coming back, but this week after I tapered to 15mg it's gotten worse :( alot of the cramping, stomach pain, bloating and diarrhea is back.

I'm just starting to feel super discouraged and am still waiting for my TB results to come back so I can start Entyvio. I seriously hope Entyvio will bring some relief, but I know it can take up to 12 weeks to work.. :(

Just feeling overall very discouraged and done with prednisone :( and I got a flat tire today. Life can be tough.

5
1 comment
3
Post image
3
5 comments

I just got my MRI results back ,its tough to translate everything into english with all medical expressions etc. ...but it ends with (best as i could translate into english ): "Conclusion : Inflammation regarding crohns with two stenosis in the end 10cm of ileum with active inflamation . There is no prestenotic dilatation."


On monday the doctor will explain it to me in detail what the whole result means.

Im feeling tired most of the time and i almost never have solid poop.I feel sick mildly sometimes and rarely to a medium degree. Its never really bad.Regarding actual pain, i only sometimes feel it mildly in some places ,it hardly bothers me. Lack of energy is...kind of on a medium level but the worse thing about it, is that i feel it almost every day. its almost constant. I also have trouble sleeping etc..

Whats your take on it?How serious does it seem?Does all that i describe indicate that i will need a big surgical procedure(maybe a colostomy bag etc...because thats my main fear)

I dont know what to make of it personally.Reading the results in detail ,kind of seem like it could be very serious ,but my worst interpretation of the conclusion isnt all that bad.Its only 10cm that are problematic and the worst thing possible is that they take those 10 cm out surgically.right? I assume ill be put on some new medication even before that to try and sort it out without surgery.

1 comment

Community Details

24.5k

Masters of the Throne

61

Currently Pooping

Sep 18, 2010

Cake Day

This community provides words of encouragement, comfort, and support for people with all forms of IBD, as well as their friends & family! This place is not a substitute for doctor's advice. We cannot treat or diagnose.

r/CrohnsDisease Rules

1.
Follow reddiquette
2.
If you have products, gofundme pages you want to promote, ask an administrator first!
3.
Don't submit low quality content.
4.
Don't post anything off topic.
5.
Don't post with novelty accounts.
6.
Don't post spam, blogspam or crosspost spam.
7.
Don't post personal advertisements.
8.
Don't be offensive, racist, xenophobic, sexist or homophobic.
9.
Don't be biased in your voting.
10.
Don't request or offer any drugs.
11.
Don't be a dick.

Other useful subreddits:

r/IBD

6.2k members

r/ostomy

1.9k members

r/jpouch

258 members

r/Health

730k members

r/depression

561k members

r/Anxiety

303k members

r/SuicideWatch

165k members

r/shittingadvice

7.4k members

r/bidets

660 members

Moderators

u/madjalapeno
CD - since 2002
u/kindachunky
livin' the bag life
u/covercash
U.C. 2009, J-Pouch 2018
u/jxj24
CD 1983
u/luaduck
Crohn's, formerly CCUK Dorset & West Hampshire
u/wardenclyffed
CD 15 years, on Humira, formerly Remicade, Prednisone
u/lotrouble
C.D. - Humira
Cookies help us deliver our Services. By using our Services or clicking I agree, you agree to our use of cookies. Learn More.
RedditView is Reddit Online Viewer ,Not Phising ,Not Hacking!