Can take it anymore

[Tummytroubles]

This is just to vent I guess.
All of you are probably going through the same thing and I read your forums and you all seem so strong. How do you do it?

I feel like I will never get better. I know I sound horrible - I still have all my parts and there is no talk of surgery yet but I can't take the pain.

The people around me don't seem to care or believe me anymore when I'm feeling this way. The only times they take notice is when I drop 10 pounds in a week. I'm hungry and when I want to eat something, I get looked at like I have 3 heads. (like I shouldn't want to eat if I'm not feeling well)

Everyone has their opinion on how I should be managing but no one understands, because they aren't going through this.

I was diagnosed in 2008 and went through steroids, salufalk, Imuran and now I'm on Humira and Prednisone. Usually Prednisone makes me feel better but right now I feel worse.

I'm sorry this isn't about anything in particular but my mind is going a million miles a minute.

I know I should be happy, I have a doctor who cares and is trying to do everything for me but nothing is working anymore. I guess I'm just having a sad day.

 

[margie]

I am so sorry that you are having a rough patch TummyTroubles, but you are in the right place for support. You can vent here anytime you need to. We all know exactly what you are going through. Sometimes, more often than not, family and friends have no idea what kind of pain that we are in because we tend or at least I do try and hide it from them. People that do not have Crohn's have really no idea what we go through emotionally and physically on a daily basis. I have been struggling with all of the tests coming back normal and still feel horrible every day. As far as eating goes, I am not losing weight because I can eat, but it gets stuck and then I vomit it all back out, so I constantly feel like I am hungry. My boyfriend has no idea and feels that my health is not like a lot on here because I haven't dwindled away like many therefore, my health situation doesn't even come close. I was so depressed with his comments over this last weekend that I didn't even feel like coming on here to talk with anyone. I became confused because of comments that he had made to me. I, and you, as well as all of us here know our bodies better than any family member, friend or even our doctors. Please know that you are not alone. We are all here to support each other. My heart goes out to you.

Big Hug

 

[Cat-a-Tonic]

Hi Tummy troubles, sorry to hear you're feeling down. I know a lot of us can relate to that. I've been ill for about a year and a half now (and still undiagnosed too) and I've definitely had my share of feeling depressed, or feeling like the rest of my life is going to be miserable. It's really easy to feel that way when you're ill all the time.

I personally have to try to shake myself of those feelings and look at all the good things I have. I have a wonderful husband, good job, cozy little house, funny crazy pets, and awesome friends. I have to concentrate on those things when I'm feeling down, and it does make me feel better to concentrate on the good rather than the bad.

Also, I have to take things one day at a time. Especially if I'm having a bad day. I just have to say to myself, okay, I'm feeling bad today, so I've just got to do what I can, and if I'm feeling bad tomorrow I'll deal with that then - can't think about that now!

I'm sorry to hear that pred isn't working for you right now. Have you talked to your doctor about possibly either upping the dose or trying different meds? Most of us like to think of surgery as a last-choice option, but if you've exhausted all of your medication options then you might want to consider it. I haven't had surgery myself but I've read many threads on the forum from people saying that surgery gave them their lives back. Just something to consider.

I hope this helped in some small way. Hope you are able to feel better soon.

 

[tiloah]

I am the worst at this. I feel so sorry for myself and I just get so depressed and I just don't want to have to keep fighting. People think you're so strong because you keep going in the face of everything, but they don't realize you wouldn't if you had a choice.

When people post those inspirational videos of people who have it way worse than you but are doing awesome stuff with their lives instead of being miserable, it pisses me off. I resent that because someone else puts on a happy face who is sicker than me, I am expected to do so too. I am sick and I am unhappy and I'm not sorry. Whatever gene or trait or whatever it is that that guy has, I don't have it. I am a negative person by nature and being sick has just amplified that. I try not to be a bad person but I'm not going to pretend I'm happy so other people can be comfortable.

Wow. I'm sorry that turned into an awful rant but I was trying to be honest. I feel like I should be saying something to make you feel better or cheer you up. I guess what I'm trying to say is if you're feeling sad, don't feel guilty about it. Let yourself experience your emotions without adding onto that. It's ok.

Anyway I hope you start feeling better and your treatment works well for you.

 

[Tummytroubles]

Thank you! That is it exactly! I feel like I need to be tough, and really, I'm not! yes i face what comes to me because what other choice do I have? I'm not going to roll over and die, but I'm not fighting either.

Urgh, I'm not glad other people feel this way because I dont wish this on anyone but I'm happy to have the support and know that I'm not alone.

Thanks guys

 

[tiloah]

I just say don't feel bad for feeling bad. I know it's not healthy to dwell on something and let it consume you, but it's ok to feel down sometimes. If you start becoming depressed it's a good idea to see somebody about it.

But do know you're not alone! We are all in the same boat and we understand. *hug*

 

[Terriernut]

Tummytroubles, you are going thru what almost all of us have had to go thru! It stinks! (not just the loo!) Pred will make your mind go a million miles an hour and cause you to climb walls the heights of which have never been seen. So be aware of that!

As for dealing with other people...dont get me started! Just yesterday I had someone comment.."oh yes, my friend has that...she manages it with her diet" She wasnt listening to me...I just had MAJOR surgery to remove alot of my bowel the £*&^ idiot! woman! Thankfully I'm not on pred anymore, because I woulda knocked her into next week! All 100 lbs of me!

Yeah, we dooo (hehehee) understand!
Misty

 

[Jennifer]

Most people don't understand sadly. Some even go as far as thinking that all you want pain pills for is to get high on them when you're actually really in pain. We look fine and I guess we should be happy about that but its frustrating all the same. Has your doctor given you anything for pain management while they try to get your condition under control? It can take a while for medications to work so why suffer further? Sometimes Tylenol can help but if you need something stronger, then speak with your doctor about it. If they truly understand your situation and want to help you then there shouldn't be a problem in managing your pain as well.

Other than pain management, there isn't much to help get your mind off the pain. What works for depression may not work for pain but you could try. There are things like distraction which could be helpful like reading, watching movies, having a stress ball etc.

I've been in remission for a long time (10years+) so I've forgotten how bad it can make you feel on a constant basis but I do remember that they can help manage your pain. Same with depression though when you're in pain, you have a hard time reaching out for help and calling doctor's offices and picking up prescriptions let alone leaving the house if you're able so reach out if you can via help from a close friend or family member who will take you to pick up prescriptions, go to the doctor and even call the doctor's office for you. I've called the doctor's office for many people before, even making appointments for them. They don't care who calls.