Hello, I am Row!

[Rowiess]

Hello everyone! As you can see, I'm new to the forum. After a while of debating if I should join or not, I have decided to when I felt a new rush of being helpless hit me today.

But let's start from the start. I'm a twenty-two year old female of Dutch origin. And I feel weird for stating this, but a little while ago my doctor heavily suspects me having Crohn's disease.

I've wandered around with similar harsh symptoms ever since I was fifteen. Actually, it was just a few months after a very rough year in school. Where I -to keep the tale short- was bullied so bad I completely became someone else. A less certain self, one who didn't dare to leave the house.

I still remember the first time it happened, I was so ashamed and surprised. I was on my bike to school and I was waiting at some point for my friend to arrive so we could bike together. Earlier, when I got out of bed, I had a really uncomfortable feeling in my bowel and stomach region. My mother just told me to go, so I went.

While waiting, the pain just kept building up and up until I had the feeling I wasn't going to control my bowels anymore. I was starting to panic, and that didn't help the situation either. Luckily, the point I was waiting at was near the house of some old friends of mine. Without thinking, I just went there and asked if I could PLEASE use the bathroom. Sure, it was allowed, but I felt SO ashamed. What weirdo would do that? I always asked myself.

Needless to say, this happened more and more. And I kept going to their house to use the bathroom until at one point I told myself that I just couldn't anymore. I don't know why, it was probably the embarassment that made me decide that. And I went to school without going to the bathroom in the morning.

When I arrived at school, it felt like I had an entire busy day behind me already. I was always in such agonizing pain and I was trying to hide it from everyone. Because most didn't understand what was going on (including myself)

Anyhow, that's how it started. It is eight years later and it has only gotten worse. Over this time I have visited many doctors, many hospitals and none of them ever had an accurate result of what I had.

One doctor actually told me to get out because I was merely experiencing some cramps, and he sent me away.

I've learned to live with this physically... but I'm still having a lot of trouble with mentally and emotionally. My parents... never really acknowledged the fact that I'm not feeling well due my bowels or that I'm experiencing a lot of pain. They have never shown any understanding. Instead, they always told me to toughen up and they sent me to school and other occassions. If I didn't... then my father wouldn't be happy. And I'm not gonna say what that means, but... well, you don't want him NOT happy.

I became afraid of my father and mother, because they never took me seriously and treathened to take things away from me if I refused their demands. Nowadays, I'm still hesistant to tell my parents that I am staying home because I CAN'T get out of bed sometimes because of the pain. Well, I can, but I don't get much further than the door.

And my older brother, he constantly makes jokes of it. He once locked me outside in the backyard as a prank and... well, I had to do my business outside in the open. I've never been so ashamed and horrified.

I... have to admit that after so long of not being taken seriously, treathened that I'd get things taken away, or mentally or physically...mistreated- I've grown to hate a part of myself.

Don't get me wrong, I don't think I am depressed, but I feel like it's just a small gap from going there. It feels like I can crash down anytime, should something go wrong.

But I really don't think highly of myself. This again has to do with my family, who often said I would end up as a failure if I didn't go to school because of said bowel problems. They always made sure to yell at me if I were indeed sick and to talk as much guilt into me as possible.

I'm really not trying to take pity on myself, and I understand it might sound this way, but really, I'm not. I'm just writing down everything that I have ever experienced with this.

And I got to discover why my parent's don't take my pain seriously. It's because my mother has MS (multiple sclirose) Therefore, she is always in pain and always tired. She actually admitted she just couldn't stand me talking about pain while she's the one in true pain all the time. At other times she just tells me; "Yeah I experience that too, but I just go on. It's no big deal." - So I can just shut up already.

And the worst thing is; I just feel so weak all the time. It's like I have no control over myself. Not over my body and not over my emotions...

Anyhow, this is my story so far. I will continue when I can, but I suddenly need to leave for something. So I'll get back to it when I can!

Thanks in advance for everyone who take the time to read and or comment on this...

 

[valleysangel92]

Hello, welcome to the forum!

I'm so glad you've found us, sounds like you've had a rough time. We are all here to help and support you the best that we can.

We will never dismiss you, we will never judge you and we will never tell you that your pain isn't real.

Crohns is an invisible illness, to most people, crohns sufferers look completely healthy, but inside we can be in extreme pain and be seriously unwell. Getting someone to listen to that and look for answers for us is often tricky and it takes a lot of hardwork and determination so good on you for getting here!

Whatever you say here is never Tmi, it will always be taken seriously and we will always do our absolute best to help you out.

We understand your pain, IBD can be such a painful thing to live with.

May I ask what your current symptoms are and what medications you are currently taking?

Thankyou for sharing your story, whenever you need advice, help, support, a shoulder to cry on or people to laugh with, we will all be here.

 

[Mistybear]

Wow, that is really sad! If you can't count on your family....who can you count on?

 

[nogutsnoglory]

Welcome to the forum we are all understand and accepting. You won't find judgement and criticism here and it wouldn't be tolerated. I'm sorry you are being treated so horribly but valley is right out disease suffering is often invisible or behind closed doors (bathrooms) its really unfair and can be very brutal.

I'm also to curious to hear about your treatment and if you aren't on any please see the doctor about starting a regiment.

 

[David]

Hi there and welcome to the community. I'm so sorry to hear about all you've been through

You mentioned your doctor suspects Crohn's. What tests have you had done thus far?

All my best to you.

 

[UnXmas]

Hey, it's so hard having family who don't understand. Especially if we don't have a clear diagnosis and doctors backing us up, people can assume we're faking or exaggerating because doctors' attitudes are giving them that impression. Do you have supportive doctors now? Are they planning on doing tests to try to confirm your diagnosis?

I don't mean to excuse your mother's behaviour, but I know MS is a horrible condition. I have a progressive neurological disease with symptoms similar to MS, and I know that in some of my low moments I resent people for saying that they think their own health problems are bad. When your mother is overwhelmed by how awful she feels and how every part of her body is failing her (which I guess is happening, unless her MS is very mild) she likely just can't imagine how any illness affecting just one body part - the digestive system - could be regarded as a big problem. Whatever your family says, your pain is real - they just don't know how you're feeling. You're not a failure for not always being able to just ignore feeling ill.