My Story

[edwardsk92]

Hello all,

Where should i start?? I was diagnosed with UC at the age of 4 dont really remember much from then till i was about 10. pretty much only remember going from doctor to doctor trying to figure out what was wrong and my mom always being really sad and down not knowing what was wrong. it started of with the constipation then the blood when i went #2. Been on every different medications, i was even treated with remicade for about 2 years seemed to d the trick for a while then didnt affect me any more, missed about half of my 4th grade in the hospital with a pickline iv ad no solid foods, i am currently 20 years old and have been in remission for about 3-4 years and when ever i go to the doc he constantly is telling me with a bg smile on my face how proud he is that i am this well and healthy and its all thanks to 6mp and colazal, not sure of what mg i take all i know is thats i take 9 colazal capsules a day and 1 6mp pill, living with uc is very hard to do especially when you always have to kow where the bathroom is wherever you go even tho i am in remission it still worries me that i will have an accident like i have done in the past, and it bothers me that my friends look at me and say you dont look sick, like you cant see my intestines you dont know how i feel.

anyway theres probably much more to my story and i can go on and on and on but im really interested in everyone elses stories.

 

[CrohnsChicago]

Welcome Edwardsk92!

You will find an abundance of stories here on the forum. The Your Story section is a great place to start!

I am sorry you have had to deal with so much and at such an early age related to your UC and yes, it is very hard to live with at times, no matter what type of IBD you have. But it is GREAT to hear you have been in remission and I hope that it is a very long one for you!

People can be very insensitive but I think the majority of it comes from pure ignorance. And we have to spend a lot of our time putting on our game faces to tolerate these types of comments such as "you don't look sick".

I am 29 and have crohn's and I know personally it becomes an issue for me socially because I used to be a foodie (and I live in a city with great food!). On most days before my first flare I was a social person and my friends are more likely to gather at a bar or restaurant for food and drinks than at someones house or to do an activity. I have become a bit of an unreliable friend now because only half of them actually know why I have to back out or I seem to be a "picky" person as one of them very openly called me in a group conversation as if they were frustrated with me and how I don't agree on restaurants anymore. I almost bit his head right off when he said that. I managed to just say (with daggers in my eyes) "well, I'm only picky when I am sick". lol

I can't ever seem to make plans without wondering at some point where the bathrooms will be and what they will look like. sometimes its more challenging for me because I dislike public restrooms. I have actually held in a crohn's bowel movement once while out because it was a one-stall restroom with a door that did not lock and I had a line of ladies waiting to go after me. It wasn't until about an hour later that I actually was able to use a private restroom and I was SOOO happy when I finally did! LOL.

And I can't pick a restaurant until I look at the menu first to see if they have something I would be able/willing to eat in my periods of discomfort.

Anyway, I too could go on but like I said, you will find MANY stories on here. And this is a WONDERFUL site for support and finding people to relate to!

 

[Hobbes650]

Welcome Edwardsk92!

You will find an abundance of stories here on the forum. The Your Story section is a great place to start!

I am sorry you have had to deal with so much and at such an early age related to your UC and yes, it is very hard to live with at times, no matter what type of IBD you have. But it is GREAT to hear you have been in remission and I hope that it is a very long one for you!

People can be very insensitive but I think the majority of it comes from pure ignorance. And we have to spend a lot of our time putting on our game faces to tolerate these types of comments such as "you don't look sick".

I am 29 and have crohn's and I know personally it becomes an issue for me socially because I used to be a foodie (and I live in a city with great food!). On most days before my first flare I was a social person and my friends are more likely to gather at a bar or restaurant for food and drinks than at someones house or to do an activity. I have become a bit of an unreliable friend now because only half of them actually know why I have to back out or I seem to be a "picky" person as one of them very openly called me in a group conversation as if they were frustrated with me and how I don't agree on restaurants anymore. I almost bit his head right off when he said that. I managed to just say (with daggers in my eyes) "well, I'm only picky when I am sick". lol

I can't ever seem to make plans without wondering at some point where the bathrooms will be and what they will look like. sometimes its more challenging for me because I dislike public restrooms. I have actually held in a crohn's bowel movement once while out because it was a one-stall restroom with a door that did not lock and I had a line of ladies waiting to go after me. It wasn't until about an hour later that I actually was able to use a private restroom and I was SOOO happy when I finally did! LOL.

And I can't pick a restaurant until I look at the menu first to see if they have something I would be able/willing to eat in my periods of discomfort.

Anyway, I too could go on but like I said, you will find MANY stories on here. And this is a WONDERFUL site for support and finding people to relate to!

Ditto what CC said. Can't even imagine what it must have been like to be diagnosed so young! There are lots of stories and each one is unique. Careful though, once you start reading them you might not get anything else done for a while.

The whole concept of having to look sick in order to be sick is a universal problem- it doesn't matter how old the person is for them to suffer from that. As much as it sucks to suffer from IBD, at least we can learn a few things and be better people for it. Not so true when you suffer from ignorance. You learned that at a very young age. I didn't get sick until 18 and didn't really learn how to deal with that until almost 30. I'm jealous.

 

[acoop]

Hey Edwardsk92,

I'm Ayana and I'm 20 too, I'm sorry you have had to endure so much especially starting at such a young age. I have had crohn's disease for a bit over 6 years now, and have never been in remission. I have had 2 major surgeries in a year, it's been a year since they thought about another one, I think they are afraid I'll have more problems down the road so they avoid the subject. I cant eat meat, veggies, fruit, greasy foods, drinks that have carbonation, and I'm lactose intolerant. I have serious pain everyday that never goes away and gets way worse when I eat or drink anything, and I go back to college this saturday. We still don't know what's wrong, and my doc basically doesn't care that much, I'm scared but I don't lik to show it, because people think I'm always so strong. I'm pretty new to this site still, I joined in hopes to hear other people's stories and stuff like you. at college I literally survive on starbucks coffee, teas, and a lot of water, because if I eat on the week days I will not make it to a single class. I don't really know what to do, but yeah that's some of my story haha.