Angry, frustrated, low.. etc..

[gracifer]

I know this probably sounds really silly. But I just feel so alone, yet at the same time so frustrated, so angry.. so low..
I've had the toughest year of my life, I thought I was over the Crohn's and it turned out a year ago I wasn't when I got a abcsess on my navel which turned out to become a massive fistula. The hospital didn't have a clue what to do. Queue wearing a bag over my navel to catch pus/crap etc that came out of it, not to mention the pain etc. Thankfully I was referred to a hospital that knew what the hell they were doing but they cancelled the operation that I had scheduled, and then I finally had one in December which gave me a temporary illeostomy and at points I was so ill in hospital that I genuinely thought I was dying. I'm having the reversal in the next month, they've already cancelled it once. I've been told I'm in remission currently, but after the op I will need a few more tests too see if it really IS in remission because they say it's probably down to the illeostomy. It is only now for the first time in 3 years that I can say I feel physically OK.

Mentally though is a whole different story. I feel so angry that I have this disease. I feel angry and frustrated that it's always going to be 'there' if not literally then it's over my shoulder. I'm frustrated that it's been another year of my life where I had to live at home with my parents, and not go and do my MA and get on with my life. I see my friends doing their thing, living abroad, getting jobs etc. I hate that no-one 'gets' what I've been through. I feel so alone. I hate that when talking to friends, that they think I should be 'over it' now that I'm well but I'm not. I feel so low. I'm so sick of all of this. I know my situation isn't as bad as some others but even so. I'm sick of being strong. I'm sick of people tellling me to be strong when all I do is cry and I feel like the weakest person ever. I'm sick of everything. At times too the anger can be overwhelming, the other day I found myself really frustrated at a stranger over something really mundane and started yelling at them.
I'm scared too. I'm so scared of it returning, and everything. Stupidly I'm scared that I will never get a boyfriend, or that when I do and I have to explain why I have such a scarred stomach that he'll just freak out.

I seem to go through a million different emotions every day. My dad says I'm a fu*ked up mess.. which is right. I was emotional before, but over the past few months I seem to have just got much worse.

I feel like I have achieved nothing since I left school, which was 5 years ago, and all my friends have gone onto do something worthwhile...

I know this all sounds really silly, but I just needed to vent.

 

[Grumbletum]

Awww, Gracifer, vent away. It's not surprising that you are feeling low after everything you have been through - the waiting, the cancelled appointments, worserning symptoms, hospital stays. You poor thing.
I think we stay as strong and try to hold it all together while the going is tough, then when things start to ease off a bit, there's a massive slump. There's no way that we can keep up that kind of effort and tension.
There is some light at the end of the tunnel, hun. It sounds like the operation has been successful and hopefully you will have the reversal in the near future and start getting your life back on track again x

 

[bigtruck]

Gracifer I'm a good bit older than you but have experienced a lot of what your going through in the last year, I also have a fistula on my abdomen and a loop colostomy, the only advice I can give is dont give up! In saying that I've felt like giving up plenty in the last 18 months. Did your fistula close when you got your ostomy ? Which part of the bowel is it connected to ? Remember there will be good days for all the bad ones!

 

[Honey]

Hi there,
So sorry you have had such a rough year. People do not always understand what you are going through ,and their thoughtless remarks make it harder! It is a shock to the system when all these changes happen so fast, so it is natural to feel upset and angry. Go with it, I did when meds kept making me ill. I am currently doing well on Infliximab infusions.
I hope it all improves for you soon. You will feel better, just look forward to that!:getwell:anda-wave-t:

 

[gracifer]

Grumbletum, I've often had that thought that perhaps I'm feeling like this, because it's been such a tough 3 years and I never for one moment thought I could ever get as ill as I've been and that after 3 years of trying to be strong, mentally you slump afterwards. I never really thought about until a few months ago. I'm glad not to be the only person to think like this.
bigtruck; it's my small intestine that it's connected too and they managed to remove it (as well as a section of SI) and several other internal fistula's so I've been quite lucky in that way. My navel though will never look the same haha.. I guess though having an illeostomy although temporary and although it pretty much 'saved me' is a big deal and I hve stggled with having one..though i do know some people took too it like a duck takes to water. unfortunately I haven't felt the same though i do kbow i'll miss the blighter when its gobe lol.
Thank you Honey I really appreciate everyone's kind words. It makes me feel less alone..

 

[Honey]

Hi there,
We are all individuals dealing with our own tramas of the changes Crohns brings about ! So, as I said before it is natural and O.K. to feel upset, and find it difficult. I hope all goes well for you . You are in my thoughts and prayers. Let me know how you are doing.
:medal1::Flower::Flower::Flower:

 

[xxjemmamxx]

Some of the things that you have described about how you feel, I feel too, so you're not alone in this. I can completely relate to the whole of your second paragraph. To me major surgery and being really ill is a traumatic event that can affect you mentally short and long term - I know that I was mentally affected by my surgery and experience in hospital, but unfortunately doctors only want to treat your physical illnesses and often overlook the more damaging and long-lasting ones.

It's completely normal and ok to be scared. You're not a f'd up mess (in the words of your dad) you're reacting in a completely normal way that anyone would given what you have been through. Even though you might not see it, you are strong and there are better days ahead.

xx

 

[gracifer]

jemma, it's nice to know that I'm not alone in feeling like this. Sometimes I feel like I'm going mad! I often think that Crohn's is not only physical but mental too, and like the physical side of things, some days are better then others...and you just have to get through the bad ones even though it feels impossible at the time.

 

[Honey]

Hi there Gracefer,
Do not worry about your bad days! You will get there, it takes time to adjust to all these changes in your health. I hope you have had a good day. It helps to talk to those who understand on this forum. Best wishes. :dusty::Flower::Flower::Flower::Flower:

 

[DougUte]

Gracifier, you are more than welcome to vent away! That is what this forum is for. I have not had the stoma, but I have had surgery that removed my T.I. and about 2.5 to 3.0 ft of my small intestine. I agree with Grumbletum, it is common for us to be stoic when you are going through this. When the pressure comes off, we collapse. I think that is are human frailties barging in. And it is what the forum is for. So we can support each other. You are not alone.

 

[gracifer]

It's so nice being able to talk to people on here who actually do understand! Its weird really, but I do feel exhausted physically and mentally from everything that's happened in the past 34 months, - I realised earlier today it'll be 3 years come August that I first got major symptoms, which in itself is just exhausting - and that isn't just the anemia talking haha!

 

[Amy2]

I'm very sorry for what you've been through and you shouldn't feel bad about being angry. People get angry over being stuck in traffic for half an hour. Your anger is totally reasonable. BUT, it's not going to do you a bit of good, unless you can control it and use it purposefully, whatever that means to YOU. Crohn's is part of your life now. That is a harsh reality. It's part of my son's, too. I HATE it. But, I know the sooner we can accept our new life, without dwelling on the negatives too much, the better off we will all be.

My son was just diagnosed in March, so we aren't there, yet. It's just the goal. Forget about what could have been and concentrate on what we still have and are able to achieve.

For me, that means keeping my son out of poverty. I grew up in poverty and I wouldn't wish it on anyone. So, my husband and I made changes in our lifestyle that allow us to save for our son's precarious future. I see his bank account going up every month and it makes me feel less afraid for him and therefore less angry.

I tell him he's an heiress now.

 

[copeland]

Hey, just wanted to lend my support as well. You aren't an effed up mess, you're a person having a normal response (anger, feelings of lonliesness, & sadness) to something that really sucks. I get angry too. The other day I found myself suddenly very angry at a stranger just because she was riding a bike and riding a bike would hurt my butt so bad that that is impossible for me to do these days.

Sometimes when I look back on the last 9 years (basically all of my college/young adult years and a bit of high school as well), I get really depressed and exhausted and try to think about what my life would have been like without a disease over those years. But I don't think that's a good use of my time and enegy anymore. It's kind of like wishing you were taller or had different color eyes. It's hard, but try not to judge yourself by comparing yourself to others. This nearly always leads to unhappiness.

I can say that it does get better, and you will get better at dealing with the difficulties of being sick. And you aren't weak, there's no way a weak person could live with this disease!