Please Understand me.....

[YozuLuv]

Umm, Hello, I just join this Forum A few minutes ago, hehe. Im not entirely sure how I should present myself. So I guess I'll just talk about myself. I was Diagnosed with Ulcertive colitis In 8th grade and was treated for it for 1.5 years. I got my large intestine removed, 2 ostomy bags, I was hospitalized numerous times for major flare ups. During this time My father was deployed to Iraq, came back and then was forced to retrain for a different field and had to go to Florida a few months later to go back to school to retrain. So my mother was going through this alone. It didnt really get to me at first, Okay I have a disease I have to do this, and this, okay no big deal. But as I got to Junior and senior Year I realized just how limited I was.(Or felt I was.) During this time, My Dad came back, but things still didnt get easier.

It turns out I actually had Crohn's disease which is why nothing ever worked. Also My mother's transplanted kidney was starting to fail which gave her stress. Both my dad's feet had bone spurs in them making it hard for him just to walk, so the military is giving him a forced medical discharge. My Aunt(my mom's bff) was diagnosed with Liver cancer and died 11/4/2011 and a few months after that her mother(who had dementia) died of old age a few months later. My grandaddy had a stroke and went from a strong working man to needing help just to get up.

All this sadness causes a lot of stress in our family, due to all the craziness going on I took a 1 year off before going to college because I want to be healthy before going. If you miss 3 weeks of school, you miss 3 weeks of school, the school isnt going to be nice to you like my high school was. But Now Im 19 years old, My parents say ostomy bag or nor(this is my 3rd one) You need to start your life. I want to start my life but Im honestly scared. I feel so "stuck" Like im still 16 years old. I feel like my Bag is like the source of all my misconfidence. I feel because its leaks, and im in constant stomach pain I should just do the bare mininum even though i know its not right. But I cant stand living with my parents any longer. Im an Only child, ive always been independent, So since Im 19 years old Im just at the age where I dont wanna listen to a single thing they tell me to anymore. Im a Adult, why should I listen? I know its not right, I dont want to feel this way. I know Im acting like an ungrateful brat, but pretty much everything that comes out theyre mouth makes me angry. I had this type of problem before but I natural came out of it. Now its back and its even worse. Idk why Im acting this way. If I saw another kid acting like this I'd slap them silly. Maybe thats what I need a good slap in the face. Or no that be bad. My mother is already call me a nasty, lazy, good for nothing, poor excuse and liar.(Im not making that up, seriously) Im just to the point where I just want to leave, Ive even asked to start getting SSI again and looking up apartments. I just wanna do what I want to do at my own pace without someone critqueing everything.

Again Yes I know IM acting like a spoiled selfish brat, I already know that. And that probably a few people might even cuss me out over it. But...all this time I felt like my parents, friends,teachers, classmates dont ever know what Im going through or had to go through. I just want to finally talk to people that understand.

 

[betteroff]

Hello,
I am sorry you are having such a hard time. I have had a leaking ostomy bag so I do understand that and it sucks bad. You must be a tough person. I give you huge credit for not giving up. Others definitely DO NOT understand what you are going through. I thought I was the only one before the internet (yes I am old) allowed me to talk to other people with crohn's. Other than the ostomy problems how are you doing? Is the crohn's undercontrol? There are people that get it. You are definitely not alone!

 

[David]

Hi Yozu and welcome!

Wow, you've been through a lot lately, that's terrible It sounds like your entire family is stressed at this point and taking things out on each other. I wish I had some good advice, alas, I do not

I can say we're here for you anytime you need some advice or just to be heard though.

All my best to you.

 

[YozuLuv]

Thank you for Replying all. It hasnt be easy at all, there are days where I just want to Crawl in a hole of Darkness and stay there. Or just stay in my room and never come out. Having Crohn's and being sick is what made me start playing Mmorpgs. There, Im not sick, Im just mage or assassin able to flashy attacks and destroy things! Ironically, I love being a Priest and healing people. :ylol:
My Crohn's could be better. I wake up in pain everyday, I cannot go a day without Pain medication. Even worse, I was addicted to the pain meds I was taking, I probably still am. (My mother never wants percocet in the house again unless I just came from surgery) Even though Im probably addicted, Im still having legitmate pain. My ostomy bag leaks so much I hate just going outside. Ive had rectal-Vagina fistulas and Im waiting for those to heal before I can get the bag removed. I had to get my current 3rd bag because I somehow got a Barotholin Cyst(They run in my family) They had to cut a second hole(the first hositpal that tried to cut it, screw up miserably) But because of the fistula leaking crap on it, it wasnt going to heal right, so I had to get the ostomy bag again.(The cyst is healed now)
My mother suggested a Support group before but I thought I was fine all on my own, but I admit its good to know your not alone.
I was already a bit of a soical loner before and the disease made it worse, but I feel a little better now.

 

[David]

That sounds so rough

What medications are you currently on?

 

[betteroff]

I know what you mean with the gaming. It seems to be a reasonably healthy escape for me at times too. Sometimes fantasy gives a needed break. I have had problems with addiction to the pain meds also. I use another drug just to stop withdrawal from the opiates now so I have absolutely no desire for it. When I think back a few years I wonder if they caused more pain than they actually got rid of. Everyone is different with the pain meds, so I judge no one either way. I am glad you are feeling a bit better mentally. For me, the mental part is more important than how I feel physically sometimes. I think one has allot to do with the other. If I am sicker than normal I have a hard time staying positive. Sometimes just being able to tell others that might understand is helpful. I think you are tough, as I said before. Being young and a girl probably makes it harder for you. I hope you continue to do better.

 

[smallfry]

Hi there,
sorry to hear of such rough times. Super glad you came to this forum. It's a great place to not feel alone and connect with people who understand. I'm sorry your parents are not understanding what you are going through and said that to you. Rectal vaginal fistulas are awful on top of it being your 3rd bag, you deserve some compassion. The stoma sub forum is a good place to go for advise on your bag leakage. Do you have a stoma nurse you can call? What product are you using?

 

[YozuLuv]

Wow I didnt expect people to be so nice to me, thank you all very much. The only medication Im on is Remicade, painkillers(switching between Norco and Dilanudid), and nausea mediction(mostly pheragan). Ive talked to stoma nurses, and my first experience with first one was bad(She was very rude to me). The second didnt really give me good advice. So I kinda just ask for sample to see which one works the best.

 

[Hope345]

Oh my gosh, you are so hard on yourself. You are not a brat. Give yourself time, and dont stress out. You are not lazy, you have a disease and you are in a lot of pain. You have to heal before you can move on.

I have one daughter who is 13 with Crohns. My 18 year old daughter doesnt have Crohns but she cant wait to move out. That part is normal. You are your own woman and want independence.

I can not believe all that your family is going through. It is more than anyone I have ever met. But as much as your heart obviously goes out to your family, your health is most important right now. You cant help yourself or others when you hurt, and your body is still trying to heal.

I believe stress does make things worse for most Crohns patients. At least it can be stressful trying to deal with life when things are not normal. It may cause a flare up.

Maybe take a course on line. That way you are doing what you need to do in a setting that is more comfortable. I hope they fix your bag so it doesnt leak. You dont need that. Make that your first priority.

My heart goes out to you and your family. But we are here to help you right now. If there is anything I can help with, let me know.
take care:ghug::ghug:

 

[smallfry]

Ive talked to stoma nurses, and my first experience with first one was bad(She was very rude to me). The second didnt really give me good advice. So I kinda just ask for sample to see which one works the best.

Sorry to hear that about your stoma nurse experience. I like to use the coloplast Sensura Click. or if you really want it to stick use the assura Extra skin barrier for extended wear - I find it sticks too much even for me. I can get you part numbers if you need them. Also, strip paste from Coloplast really seals things.

 

[YozuLuv]

Oh my gosh, you are so hard on yourself. You are not a brat. Give yourself time, and dont stress out. You are not lazy, you have a disease and you are in a lot of pain. You have to heal before you can move on.

I have one daughter who is 13 with Crohns. My 18 year old daughter doesnt have Crohns but she cant wait to move out. That part is normal. You are your own woman and want independence.

I can not believe all that your family is going through. It is more than anyone I have ever met. But as much as your heart obviously goes out to your family, your health is most important right now. You cant help yourself or others when you hurt, and your body is still trying to heal.

I believe stress does make things worse for most Crohns patients. At least it can be stressful trying to deal with life when things are not normal. It may cause a flare up.

Maybe take a course on line. That way you are doing what you need to do in a setting that is more comfortable. I hope they fix your bag so it doesnt leak. You dont need that. Make that your first priority.

My heart goes out to you and your family. But we are here to help you right now. If there is anything I can help with, let me know.
take care:ghug::ghug:

No Im Brat, My parents alwasy gave me what I wanted unless it was harmful to me. I dont go to school yet and I dont think with aleaky bag and daily pain I should get a job right now and want to go on SSI. I literally just stay home all day and play video games, watch Anime(Japanese cartoons), and talk to friends. All my friends are in college so I dont get to see or talk to him as much as I did in HS, I just kinda stay in my room. My parents tell me to clean and such but ever since I turned 18(and had the INTENSE and STRESSED desire to move out) I Kinda just dont listen to them anymore. I honestly cant stand this house, or my parents critizing eveything I do. My mother litereally yelled at me that Im a spoiled, frigid(The person I like I meet online and lives in trinadad), pathetic, lazy little girl. My dad tells me I need to grow up because I like VGs and Anime. But liking those things doesnt make me a child and does even play games to dare lecture me and makes dumb choices about my gaming when he doesnt know what he's talking about.
Theyve alwasy said I was a good kid, I rather shop in thrift stores then mall. I dont do anything illegal, or bad, I have common sense not to do so. They say that, but then they say hurtful things. There are times I just want to leave the house and not come back, and then they see me on tv and realized everything they say is wrong. But I cant leave because I still need ostomy suppiles, I only have HS dilpoma, no money for college. Im trapped here unless I can move out like everyone else. I probably deserve all the hurtful they say, but that doesnt me I have to like. Now my parents are considering of putting me in rehab because im addicted to the painkillers I take. I still have honest pain, but my mind is paying tricks on me on which is real pain and what is fake pain. I cant tell the difference anymore. Right now my stomach is hurtting, and Im tempting to take meds but Im reallllllly trying hard not to. I have till halloween to get under control or im sent to rehab with the crack addicts, and actual people that have been in trouble and that scares me.