Feel so alone right now

[porter89xxx]

Okay so i was thinking about keeping this all locked up inside my own head but it keeps going round and round and i cant seem to take much more, i just feel so alone right now so badly, im in alot of pain on a daily basis and just feeling like i really dont get the support from anybody right now. I have been feeling like this for ages im losing weight on 54kg right now, my family are really really starting to frustrate me, i feel like i have to eat for them some days to make them happy which causes more pain, if i choose to drink a fortisip rathger than eat something worth the same calories i feel they just look at me as if ive not eaten anything, my mum and dad and also my nan i feel just see the weight being a issue rather than my stomach with having a problem, they dont see how i feel they just see the weight loss, i just feel like i want to scream at them and just say that isnt what im pissed with tbh my weight is least of my worries its the amount of pain and diareah and sickness and tiredness etc that i have to put up with and its making me feel so low and moody with everyone which is causing me to snap at people. i dont no where to turn to because when i am in pain my mum blames it all on my GI and there not doing enough etc but they are still trying to run tests and investigations, i just feel like ive hit a mental block in myself where i dont no what to do or what to say to any of them anymore. I am sorry if i have made you feel all down after readin this i just really am feelin like im trapped in some sort of way, i hope u all can understand, just needed to no im not alone in this world and there are people that seem to get this crazyiness.

 

[Dallies]

You are not alone. Don't ever think that. :hug: I am sending you a MASSIVE hug.

 

[Jennjenn]

Do not feel alone. This is a frustrating and at times a debilitating condition to have. I am sure your mother is just as frustrated as you are if she feels that your GI is not doing enough. Some people have to go to many specialist and many doctors and it takes time often to find the right combinations in medicine to make crohns symptoms be put in remission. Sometimes when speaking to family about illness and how your feeling when there are problems...they more of the time will speak out their frustrations.
Possibly try seeking another GI to get another opinion if you are still feeling like this. I have had my GI for 4.5 years and he even refers me to other specialists when he has a block of what to do at times if he cannot get the symptoms under control.

 

[MapleLeafGirl]

You're definitely not alone. I know sometimes it feels like we are, but we aren't. Your parents are just worried for you and probably feeling pretty helpless right about now. Time and time again, I have read that it is harder for the caregivers than it is for the person who is ill. I have never been on the other end so I don't know for a fact that is true, but I do try and keep it in mind when I find myself ready to explode at someone for just not getting it. You definitely have all of us!

 

[porter89xxx]

I know it is hard for them and they are worried however it seems its more my weight they seem to talk about and not the pain and the other symptoms I suffer it frustrates me as they all comment on my weight and prod me and seem to look at each other. I am seeing a dietician who my gastro refered me to but am not on any medication other than nutrion drinks as they are still investigating I just having one of them weeks where its all just getting to much. Thank you all for not making me feel I am mad lol

 

[silver]

Of course you're not mad, it's difficult for them to watch you go through this and feel they can't do anything...but you will feel down sometimes, so i'm glad you posted this, I hope things look up for you soon :hug:

 

[Crohn's 35]

You're definitely not alone. I know sometimes it feels like we are, but we aren't. Your parents are just worried for you and probably feeling pretty helpless right about now. Time and time again, I have read that it is harder for the caregivers than it is for the person who is ill. I have never been on the other end so I don't know for a fact that is true, but I do try and keep it in mind when I find myself ready to explode at someone for just not getting it. You definitely have all of us!

Ditto...couldn't of said it any better!:ybiggrin:

 

[peakey 1553]

Hi porter89xxx Try to be patient with them, they really care,it's because they can see the weight loss, but not feel the pain so they don't understand but then you probably know all of this anyway. I sympathize with both sides. I hope you get sorted out soon, we are allways here to listen.
peakey1553
crohns diagnosed 2 years

 

[Astra]

Hi Amy

sorry you're feeling like this, dunno what else to advise really, keep in touch on FB, you're not alone and defo not mad!
how about you sit down with them all and explain what Crohns is and that it's not your fault about the weight issues, that it's inflammation inside you that hurts, and in turn you can't eat, and altho it's hard to say, tell em to back off! with the best will in the world, no one understands wot your going thro, only another IBD sufferer.
hope you get something sorted soon, you've suffered enough!
love
lots xxxx

 

[porter89xxx]

Thank you all so much for all your support sometimes its just so hard to explain things when you feel that they have already got judgement on what is going on and that is the only thing they seem to see its just hard for me cos I'm going through pain

 

[GutlessWonder86]

sending you virtual hugs (((hugs))). you are not in this alone by far. I've been there many times myself. Can your ask your GI for something for pain management? We are entitled to be made comfortable while the doctor figures out a game plan to get this rotten disease under control. Get on the phone or have your mom get on the phone and tell him that you need relief NOW.

What I tend to do when I feel lousy is write poems about what I'm going through that are usually funny only because I find that laughter is the best medicine..... well for me anyway. Better said than done I know. Also, if you have stomach spasms ask for something for that as well such as Bentyl aka Dicyclomine. That will help take the edge off some of the pain that comes and goes. Ask your GI about it. You need relief from running to the bathroom and a sore tushy for pete's sake and don't let ANYBODY make you feel like you have to prove something to them. You are in pain. You need to listen to your body at this time. Rest, drink when you can, and listen to your GI. Don't take cr@p from anybody. Hang in there!!! We crohnies have your back.

 

[Swirl]

I feel the exact same way. This is why I logged on to the site right now.
My brother getting on me now because if we all go to florida, I'll be weak and unable to support myself. And etc... All because he had talk with our uncle and older cousin. Yeah I really felt like ending it all, if only it was that easy.
Best thing to do is ignore anybody that puts you down.

 

[Guest]

you're not mad, hun, nor are you alone with all this :hug:

unfortunately, it's the nature of the disease sometimes, that it takes ages to properly diagnose... and consequently ages before the right treatment can be given. i know you said you've still to have various tests done yet, but does your GI know just how poorly you are right now? and how much weight you are losing??

regarding your family.. unfortunately people don't really understand what they can't see.. and what they're seeing in you is weight loss. you have to be determined enough to only eat and drink what you know won't hurt you, even if it produces the looks and stares from those around you. put you first, honey - you're the poorly one, and you know what you can tolerate and what you can't.

i hope you don't have to wait too much longer before a decision is made, and meds are given to get you feeling better.

 

[Barbie]

"No one can make you feel inferior without your consent" x x x I love that! Honey....even though I live on my own now and have left home my parents still seem to watch everything that goes into or not into my mouth and make comments like should you be eating that or why are you not eating etc and it really is I know although very hard to feel but they do just love you very very very very much and the thing I used to try to remember is that It's better to have people who actually care about you and perhaps say comments which annoy you and pressurise you than to have nobody care at all.

Having said that it is so difficult. They cant understand, they have no idea or way of understanding because they cant feel your pain or see your pain. That is what is most frustrating of all. This disease is different for all of us in what we can cant eat etc we are still all of us unique in our own ways and it seems very difficult for people to understand that one person with ibd cant eat chocolate when another one can and at the end of the day I try to just be happy for them that they dont understand as they are very lucky.

Have you tried explaining that the fortisip would actually be much better for you than a meal thats going to cause you pain and probably not absorb as much nutrition? When I explained this about the fotijuices/modulen to my parents they seemed to understand a bit better. You should be so so so proud of yourself that you are coping in the best way you know how and in a very sensible way as it sounds as if your trying with all your mite to get by and even when you feel so rubbish have the fortisip instead of the food. I have nothing but admiration for you.

You will get through this and hopefully your family in time will see how hard your battling to stay well. I think it must be a very common frustration for al of us as people just do not seem to understand the food thing and we tend to feel judged and watched by everyone for fear of being told..."Its your own fault" or "You shouldnt be eating that."

Dont let peoples ignorance get in your way, It really doesn't matter, your family obviously really care about you and please remember that because they are also just trying to get by in the best way they know how too and its all because it sounds like they love you very very much.

Hope I havent barbled too much,

big hugs xx

 

[Regular Joe]

Hi Porter,

I understand it from both sides too. There were times when my girlfriend didn't want to eat, and I would get frustrated because I thought she was able to eat, but just wasn't interested in eating, or her moods were affecting her appetite and she should eat to stay a little bit healthier.

Then the darn disease decided to clobber me a good one. Which shed a totally different light on things. I now understand because I do the same thing as you. She'll ask me if I'm hungry after a few days, and I should eat something. I smile at her, and all I say is "You know how it is." She smiles back. My appetite either a. shuts off completely or, b. like you, my gut and butt are so sore from pooponing so much that I don't want to feel the pain.

You are definitely not alone. Maybe you could ask your folks to join you in reading our forum and comments.

 

[Silvermoon]

Good idea, Joe, regarding getting you parents to take a read through the forums...might shed a bit of light....

(((((((( Porter ))))))) I am sorry you feel this way. I am not sure that anything I say right now is going to make you feel better... I've been at the bottom of that hole, too...and it always looks like it's a hell of a long way up....

Maybe I can give you a bit of a smile with a story.......

When I was first diagnosed, one of the things the doctors tried was a feeding tube....kind of like doing a Modulen diet, only the "food" wasn't as nice as it is now, so they fed me by a tube in my stomach....for 6 months.

I was getting absolutely all the nutrition I needed, but I still lost weight, as you don't eat the "extra" calories.....

Anyway, after they removed the tube, I was allowed to eat again, but after being on a tube for so long, my stomach had shrunk a bit, so I couldn't eat a lot at once. Suppertimes were the hardest, as dad was always trying to encourage me to eat "just a bit more".... He would ask me "Do you want to go on the tube again? You gotta eat!!"

Well, one night, I was full up to my eyebrows (I was about 13 at the time...jsut shortly after I was diagnosed....). I got so upset that he didn't believe me that I was full...and started crying.... and he kept pushing.... so I took one more bite of cassarole, just to make him shut up.....and promptly threw everything back up onto the table.....

Now, it was kinda gross (sorry about that :redface: ) - but my dad never pushed again. And I am not suggesting that you throw up on your mom's dinner table....lol.

But I tell you the story to let you know...you truly are not alone.... Do waht you can, and do it for YOU.... the Fortisip drinks are awesome, and because of the way the ARE made up, they probably are better for you, as your body is going get the nutrients it needs rather than just passing the food through.....

See if you can get you doc to think about and/or agree to some of the tips above....(the Bentyl mentioned by GutlessWonder is a REALLY good idea...)... and go from there....

It's hard when they are your parents, 'cause you DO want to please them.... but right now... YOU are most important......

I hope you find some relief soon.....

 

[porter89xxx]

Once again thanks everyone so much for the support it has made me smile a little bit more and realised that whatever it is it makes u feel so isolated at times and you just dont wanna say it because you feel they are only trying to help to. My GI and my dietician both talk to each other and are keeping an eye on my weight, it just feels like when the tests are coming back normal i feel like im going mad and also when i bleed on and off i think why the hell are they coming back normal and yet i feel so ill and weak, i no i will try to talk to my GI to see if there is a course of steriods or something i can go on (could be the difference between me getting a little better than to be the same) it just so frustrating cos im so young and i just feel like i have no life i feel like im 70 even 80 odd sometimes and it really gets you down when you see other people can eat the food you used to eat and you cant ie i stupidly made the mistake of drink mars bar milkshake yesterday and i really paid for it but it is also really upsetting because you just feel like no matter what you eat drink it aint gonna make a difference your bodys made it mind up. Sometimes i feel so alone and just cry and cry and then i wind myself up and start snapping at people when i dont mean to it just all becomes to much for me somedays that i dont no what to do anymore. xxxxxx

 

[Jellybean]

Hi! Sorry to hear your feeling so bad at the minute, I think you have done the right thing not keeping it bottled up. I'm new to all this myself and don't know what to say other than i hope you get the treatment you need to help you feel better soon...hugs

 

[MisB]

Everyone has said everything so well, I don't know what to add, other than I'm glad you have shared this with us, and I understand how you feel. If you had a broken bone or stitches that people could see, they would be saying "Oh, you poor thing, let me help you." Maybe we need to get pictures of our colons and show them exactly what happens when we try to eat something then maybe they'd get the idea and be more supportive. My husband had a hard time understanding at first until he started going to my doctors appts. with me. Now he has an idea from the doctor how serious it is and has been a lot more supportive.

Just know you are never alone and I'm sending you a big :hug: from me and I don't think the others will mind if we add a really, huge, big :ghug: Wishing you the best and you will get through this.

 

[Sophia]

*bighug*

We are with you...

I understand what you mean when you say you feel like you don't have a life... been there... (still there to some extent) It is so frustrating and depressing to have to put your life on hold. I really hope you'll recover soon, and get your life back! It is possible! I've read lots of posts on this forum to find tips, hints and support and I found that it has helped me a lot! Hope it does the same for you!

xoxo

 

[Absentminded]

Hi,

I'm sorry you're feeling like you are at the moment. Am sending you big hugs!
Everyone has pretty much said what I would have.
I don't know which country you're in, but have you joined a Crohn's Association, like the NACC in the UK?
If you do they might have a group of Crohn's 'Sufferers' in your area. There's a group where I live who meet up every three months for a drink and a chat. I know the forum is AMAZING for advice and support but sometimes it's also comforting to know that there are some people going through the same thing near you.
Not sure if that all makes sense.....

I hope things start to pick up for you soon. I've kind of been where you are, and it can get better!

Lucinda x

 

[Regular Joe]

i stupidly made the mistake of drink mars bar milkshake yesterday and i really paid for it but it is also really upsetting because you just feel like no matter what you eat drink it aint gonna make a difference your bodys made it mind up.

Boy! I can relate to your post. I know how you feel. I did the same thing on Saturday night. I ordered a "coffee toffee" frosty milkshake at Wendy's. It was all goobered up with candy and chocolate. I paid dearly for the next two days. I agree with you, and sometimes I just go ahead and pig out on something I used to eat because, like you, my body has it's mind made up and it doesn't matter. I'm gonna be in pain and suffer even if its chicken and white rice.

 

[Manzyb]

Sorry you are having such a rough time!! It is never any fun to be so sick.

I think the reason why they always comment on your weight is because that is what the see. They can't see how bad you hurt and all of that. I know that last year I got really sick again and had lost about 45 pounds, was under 100 pounds, and that's all I ever heard. It gets ridiculously irritating. Try to let it just roll off your back. You are not alone! hang in there. I hope you get better soon!

 

[ameslouise]

My parents are OBSESSED with how much I weigh - always asking and always commenting on it. I think it's natural for parents to be concerned about this -
It's what they can see and what they feel they can help control. Unf, they have no idea of the complications of making the wrong choice of what to eat!

Hang in there. Remember that they are coming from a place of love and concern, and do your best to try to educate them.

-Amy

 

[belle1999]

I know when i was flaring really bad, my mom would keep saying "you need to eat" but i didn't even have the desire to put anything in my mouth. it was hard enough to drink something, let alone eat. but i think my mom didn't know what else to do for me. she knew that i needed food and she knew i was suffering, but all she could see to do was keep encouraging me to eat. that may be what your family is going through, too.
big, big, big hugs!! you are not alone!

 

[DougUte]

4 years ago I had my first flare up. I went to the ER 6 times in a month. I could not eat. I lost just over 30 pounds in that time. I did get a colonoscopy, but no other tests. They did some x-rays of the abdomen and found nothing wrong. I was in so much pain I told my wife I wanted to die. I was diagnosed with Irritable Bowel Syndrom. People would tell me to eat. I was afraid to eat anything because it would set off the next wave of pain. They had no idea what I was going through.

This thread has made me realize that I also am not alone in it. It's nice to hear from others who are dealing with this.