New to this....

[Mika]

Hello All,
I am new to this and don't really know what to say. I was just diagnosed with Crohns but I guess I don't really believe it because I feel better, or should say...come to terms with it. I didn't feel good last month or honestly for the last 10 years, but I got so used to living my life around where a bathroom was, driving alone so I can stop if I needed to and making jokes about myself so that even when it was embarrassing because I had to excuse myself 3 times in the same dinner with friends, people would laugh with me...not at me (if that makes sense). After bleeding for months, I figured I better get checked out because hemorrhoids shouldn't last that long.

The doctor said that the condition I am in is not good. I need to not take it so lightly. That I am pretty damaged. I am trying so hard to be good with my food intake but its hard because I am hungry!!!...lost 6 pounds in a couple days....so I started eating again and I hurt but I am not hungry anymore (that's the trade off) and I hurt for 10 years on and off...so it doesn't seem that bad because I am used to it. And I know I am nothing like some of the people on here who have really bad issues but I did have my issues. I was a regular in the bathroom..at least 15-20 times a day...2 of which would wake me up at night for months (I should say a minimum of 2 times). So its not like I was just dealing with a tummy ache. So I am down from 20 to 6 or 7.....awesomesauce in my book!!!

I guess I am trying to figure out how to be better at eating better when I am okay with not feeling well. Feeling like crap (pun intended) has become my norm.

Anyways, that's a big intro but I am here...hungry or hurting....I haven't found the happy medium yet.

I do have to say I am happy that I wont ever have to cry because I have to poop again. The weekend before I found out I had crohns I begged someone to pull off the freeway to stop at an AM/PM for me to use the bathroom. I ran in (of course)...and when I came out, I just started crying. I was embarrassed (even though no one else in the car cared) that I had to run in to the bathroom. I was embarrassed because I felt like my friends and family have to run their lives around my pooping schedule and most importantly I was embarrassed because I was sad that I am the ONLY one I know that has this issue. Well...now I know it was something...and I now I know I am not alone....we are like a hyper active pooping community.

Oh...and as long as I am talking...I am sick and tired of the people who are telling me that this is in my head! That if I just don't think about it, it wont be a problem. Yeah...I heard that about Auto-immune diseases...if you just think positive they go away. (Sarcasm!)

 

[DJW]

Hi and welcome.

This is definitely not in your head. And if not thinking about it worked none of us would be here.
You've suffered for so long at least with a diagnosis treatment can begin. Have treatment options been discussed?

You are NOT alone. Sending you my support.

 

[Axelfl3333]

welcome to the club no one wants to join.its not in your head you,ve got a long term health condition to deal with,you,ll get immune to thoughtless remarks.it does get better but the meds take time to work.
foodwise be aware of ones that set you off greasy, oily food generally bad,oily fish good treat raw veggies and fruit with caution.alcohol be careful,smoking is really bad.
its really good to informed but dr google is a manic depressive its never good news,medication wise the leaflets in the box are a cover your back exercise really a poor read,they are not poison.theres lots to think about but the vast majority of crohnies manage fine and do not bother with message boards,it takes time but it can does get controlled.god luck all the best

 

[David]

Welcome to the community. I'm glad you've finally been diagnosed!

Out of curiosity, what is your treatment plan?

All my best to you.

 

[Mika]

Thank you all. I am on Liada (4 pills a day). I think that is pretty low treatment if I am reading it correctly. At least I am not on steroids which sounds like a good thing.

I feel like since I was put on the medicine, I have better days....and a LOT less bathroom time, but when I do hurt, it hurts ALOT more then before. Last night I ate peanuts by accident (Im still new to remembering I cant have those) and I was in so much pain. I don't quite understand because before when I ate something like that, I might hurt a little, but not like I do now. Is that what others have experienced?

 

[David]

Yes, Lialda is pretty bottom of the treatment pole. If your disease is as advanced as it sounds like it may be, starting from the top might be your best but.

With the additional pain that you're describing, I'm a bit concerned that you may be experiencing a partial blockage. If at some point the pain becomes REALLY bad, please head to the emergency department.

 

[Honey]

Hi there Mika, and welcome
I hope your new treatment works soon and helps you feel better. It takes time to get the right one which suits you, and then it will be more under control. We are all individuals in our symptoms and what meds agree with us . I was on meds first which did not agree with me before I was on infusions. I am currently doing well. I know how difficult it is to be caught out when you are out . So lets hope that will improve soon. Let us know how you are. Best wishes.
:rosette1::welcome::rosette1: