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How do I stop hating myself?

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Crohn's Disease
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Posted 7/5/2012 5:56 PM (GMT 0)
This disease is my weakness. It consumes such a large part of my life and makes me feel like I'm not worthy of living sometimes. I try to cope with the fact that this will be my life forever - and sometimes I even try to be optimistic ("I'll have good days!" or "Maybe someday it will be cured!"), but by and large I am utterly defeated by this most days.

I'm tired and hungry all the time. I'm afraid to go out in public. I'm afraid of people and I have very little friends to begin with. The friends I do have just don't understand what I go through on a day to day basis. My husband has been my absolute best friend throughout my latest and ongoing flare-up, but I can tell it's wearing on him, too. I'm afraid to lose him. I'm afraid of a lot of things lately. And really I just don't have a high opinion of myself anymore.

This disease makes me feel disgusting and humiliated and it takes away the things that really matter (like sleeping and eating and people). It interferes with any social gathering I go to either because I'm too tired to stay for long or because I can't eat anything that is being served. It just gets so frustrating!

I'm just having a really hard time finding the strength to keep going and more than anything I just hate myself so much for feeling this way. I'm generally more optimistic than this - I like to believe that things can and will turn around, but with this most recent flare (which has been ongoing since August of last year, which completely ruined my wedding btw) all I can say is that I am just so completely angry in general. I realize that this disease is not my fault and it shouldn't make me feel like this, but it is... and... I don't know. I'm just so depressed lately and I feel very alone. :\
Posted 7/5/2012 6:34 PM (GMT 0)
WingZero, I'm sorry you're feeling so sad. I have to ask though - have you had your vitamin D measured lately? Low vitamin D can make you fatigued and depressed. I'm sure you're keeping up with your meds, but I just wanted to make sure you had a good understanding of your nutritional status. I take vitamin D supplements to keep mine within the normal range.

You know, I said to my husband recently that going gluten free has really improved the way I feel every day, but it has also taken a good part of the joy I get out of eating and preparing food. There are a lot of people with special diets these days, so I don't feel "weird" or anything because of being gluten free (and essentially a vegetarian), but I am sad that I have to work harder to figure out menu plans for my family and spend more time talking about food choices at restaurants. It's not a great situation. On the other hand, I'm a glass half full kind of gal, so I don't let it get me too depressed. I tend to just have my little pity party and then move on.

I suppose I don't know who your friends are or whether they would be bothered by your dietary needs, but I will bet that if you go to a party and bring a dish that you like and enjoy, they will be grateful. They will get to share your company and not worry about what you're eating.
Posted 7/5/2012 8:00 PM (GMT 0)
This is a hard disease to deal with, but remember it's not your choice that you got sick. We all feel a little down now and then. You are certainly not alone!!! Hugs! Keep us updated on how you are doing.
Posted 7/5/2012 8:28 PM (GMT 0)
WingZero, you're in my head reading my thoughts! Most of us all feel the way you do and it's really important to vent about it, it's a great coping mechanism....I've never been in a full remission in my 21 yrs of having this DD and I know exactly how you feel, everyday is a struggle and seems so bloody pointless. But, there are some things in life that I've been happy to have experianced and I try to focus on those things....what really gets me through each day is knowing that even if a cure for our DD is never found, we won't live forever and when our time comes we'll finally be free of everything horrible and that's what get's me through those down and out feelings.

I have found exercising regularly to be a huge benefit in handling the horrid emotions this disease brings out, and it helps some with symptoms of CD as well...find what makes you truly happy and focus on that when you're feeling down.

((((((((((HUGS))))))))))
Posted 7/5/2012 8:59 PM (GMT 0)
Wing vent away.  You are not alone.  I've been venting on and off during the last several years.  In between the venting I've been able to have and raise 2 beautiful children who have babies of their own now and hey, several years later I'm still here venting.  I understand what you're going through, I guess one of the things I hate to this day, is the diarrhea, it doesn't allow me to have any peace from one day to the next whether I go shopping or to a resturaunt with my husband.  I know where every washroom is.   I hate the sick feeling that I often get.   It has hurt me socially but everyone has sort of gotten use to me so just leave me alone which makes me feel too lonely at times.  Keep the faith, maybe one day they will find a cure for this.

Hugs

Post Edited (dorri) : 7/5/2012 3:29:50 PM (GMT-6)

Posted 7/5/2012 9:01 PM (GMT 0)
wing: have you considered surgery? If I were in your situation I would be consulting with a GI surgeon at the best teaching hospital I could get to.
Posted 7/6/2012 12:23 AM (GMT 0)
Thanks everyone. Truthfully I just needed to vent. My symptoms have been improving a little after a double dose of remicade, but I'm always scared they will just return again. And they aren't quite where I'd like to be anyway...

My vitamin levels were fine the last time I had them checked. I have bloodwork again in a couple of weeks, too. I'm also done with heavily restrictive diets - I did SCD/gluten free in the past with no real improvement, so now I'm just settling on a low-res/low-fiber diet because it's less overwhelming and I really need the calories. The frustrating part is when I go out - everyone always wants to get chinese food or pizza and they know about my condition so it's just irritating. I'm probably just going to start carrying Boost drinks in my purse for those situations, because I end up starving whenever I go out which makes my symptoms worse too.

Surgery is not something I want to consider right now. I don't feel my symptoms are bad enough to go that route yet and I'd like to exhaust my other options before I make such a life-changing decision. My self esteem is at it's all time low as it is and surgery would not help that at all.

I just really hate this disease sometimes. I try so hard to do all the right things and I just feel like I'm always going to be pushing that boulder up the hill for the rest of my life. I'm tired and I want a break from all this. I'm still so young and I hate to think that I'm just not going to be able to enjoy my life.

Thank you all for your support. It's what I need most right now. <3
Posted 7/6/2012 1:13 AM (GMT 0)
That's okay, I understand your need to wait or take other routes.

I can't eat pizza either. I do, but I shouldn't because I feel sick after it. When I was really bad and ended up in a Chinese resturaunt with the others. I would opt for the rice and the fine noodles. I could not tolerate the deep fried stuff but I always had a choice on the menu as we always go to Buffets. Lol, it is a bit expensive when you can only eat rice and noodles. Now that I'm not as bad I take only a spoon or so of this and that and eat only what I can, and if I can't then I don't feel bad because I don't have much on my plate to begin with.. My husband on the other hand makes up for everything that I can't or don't eat.
Best of luck and hope you feel better soon.
Posted 7/6/2012 3:02 PM (GMT 0)
Thanks Dorri :)
Posted 7/6/2012 5:00 PM (GMT 0)
WingZero, I was young too when I got kicked in the arse with this disease (23 going on 24) and a new mom and bride so believe me, I understand your fears and frustrations with this DD...I'm 45 now, 2 beautiful grown adult children and with the same hubby...this disease is like a rollercoaster with the emotions and symptoms and all...even though I've never been in full remision I've definitely had months/yrs with major severity and some months here and there where it was a little settled but still not great...all I can say is just try and take each day at a time, sounds silly I know, but there's really no other way to get through it....just hoping each next day will be a better one is basically how I've made it this far (along with exercising as my coping mechanism of course).

Best of luck and feel better soon!
Posted 7/6/2012 5:12 PM (GMT 0)
To PB4,

You have a point, but not everyone is wired the same. Some people want to have a life and doing the same things what they did before. For example, me. I want to do my sport that I did before. Since I'm in a flare, I can't, I don't feel too good. And when and if, I get out of the flare, will I have the same energy...who knows.

Sometimes, this disease can be the end of the world and not everyone copes the same. Shiiit, some students in Japan were killing themselves because they failed some exam.

Coping skills, what life represents for someone is very indiviual.  It is, what it is.

Posted 7/6/2012 5:18 PM (GMT 0)
I'm well aware Somedude, we are all different, but all I can do is offer advice based on my experiance in the hopes that someone won't end up taking their life as a result of having a horrible disease like crohn's.

It has not been easy for me with never being in a full remission and I've had serious issues over the yrs with anxiety and depression as a result, yet I'm still "here", even though most times I wish I wasn't, so I know exactly how WingZero feels about hating herself...I did too, but now I just hate the disease.

One things for sure, it wasn't easy for me to push myself to exercise, I started slowly and when I felt a little better, I was able to push harder and it's given me more energy than taking B12 vitamins alone and most importantly, it's curved my suicidal thoughts...hence why I'm still here.
Posted 7/6/2012 5:26 PM (GMT 0)
That's another thing I hate about this disease - It makes it hard for me to exercise. Prior to this flare, I was running 4-5 miles 3x a week. I haven't really left the house in almost a year now with the exception of an occasional walk. And the walks always make me feel better, but I have to be careful because I'm already underweight and I tend to overdo things too soon.

The thing that is really killing me right now is the lack of support I have. It's making me hate everyone - I can't stand going on FB to read about what everyone else is doing, especially when some of them know what is going on with me and they can't even manage to contact me just to see how I'm doing or drop by just to hang out. I really wish I had a crohnie friend for these reasons. Because right now all my "friends" are making me angry.
Posted 7/6/2012 5:47 PM (GMT 0)
You make perfect sense WingZero. You'r friends are making you angry because they are healthy, doing what they want to do. You can't and they can't really understand you. And as the saying goes: "Misery loves company", so you wish you had a friend that had the same problem as you so that he/she can sympathise with you and go through what you're going through.

I understand EXACTLY what you're going through. And, I'll never give you false hope and say it will get better. Life is f..ucked up, to be honest. Someone who goes through life without any health problems has hit the jackpot because without health you have nothing.

I know you talked about surgery and you're not ready. I am not ready either. But I can't go on like this for too long If I can't find remission in the next 2 years, I have to bite the bullet and hope for a better life with surgery, cause life right now sucks donkey balls. I have UC, btw.
Posted 7/6/2012 8:15 PM (GMT 0)
WingZero, would it be possible for you to try some mild yoga or pilates at home? Even that would help immensely as a coping mechanism for your emotions.

You have crohnie friends here, I know it's not quite the same but at least you can communicate here and have total understanding and support.

Hope you feel better soon ((HUGS))
Posted 7/6/2012 8:18 PM (GMT 0)
Somedude, although surgery for UC can actually "cure" it, unfortunately it doesn't work the same way for CDers since usually at some point the disease will start affecting the area or close to it after surgery...not to mention, CD can affect any part of the GI tract from mouth to anus (where as UC is limited to the colon/rectum) and it can also affect more than one area at a time. CDers don't get to look at surgery the same way UCers do...the relief of finally being disease free isn't a very realistic option for the rest of our lives like it can be for UCers.
Posted 7/6/2012 9:25 PM (GMT 0)
It's not even that I want a friend to piss and moan to all the time - just someone who gets it, who we can both lift our spirits with when we're down by doing FUN things. I'm actually pretty sick of being miserable all the time, but none of my friends seem to want to be around me for whatever reason, and it's depressing. And yes it makes me angry and I feel left out.

Surgery really isn't something I want to look into. Only if it's needed, and even then I think I will be devastated if it ever comes to that. I just can't handle the blow to my self esteem anymore. :\
Posted 7/6/2012 9:27 PM (GMT 0)
And thank you pb4. I do some very light yoga/tai chi stuff at home to help with the back pains, but I miss flying through the streets and being outdoors. I used to be very outdoorsy and now I'm just cooped up all the time. It's taken a big toll on my mental health.

*hugs back*
Posted 7/6/2012 10:20 PM (GMT 0)
I wonder if there's a support group for other CDers in your area that you could meet up with? Worth looking into, maybe ask you doc if s/he's aware of anything like that.

Chin up Wing, you'll manage, and know that at least if nothing else, HW is a great place to share/vent.
Posted 7/6/2012 10:50 PM (GMT 0)
Having CD or UC really makes you learn who your friends are doesn't it?
Posted 7/6/2012 10:53 PM (GMT 0)
Haha it sure does sherbear. I'm finding that I don't really have any!
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