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Post by tigergirl10 on Mar 22, 2011 16:06:11 GMT -5
Been feeling so depressed since I got home from hospital yesterday. Thought I would be bag free and planning my wedding. Instead I lie in my bed in tons of pain hating to now deal with an illeostomy. None of my friends have called or visited. Feel so alone in all this. And very ugly and unattractive.
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Post by pretty on Mar 22, 2011 16:29:52 GMT -5
Tiger it sucks for you to feel so awful, but I want to say good job putting it out there and sharing your pain. You have a right to your depression as it is part of the journey. Please don't get too down though, none of this is your fault, and it can't be helped - they will reverse it when it's ready - so you just have to get through it. And nobody said you have to smile while you are getting through it - that's your choice girl! Having indulged myself feeling like sh!t lately too I am in no position to judge you, just to offer support and encourage you to hang in there. I'm proud of you for posting this when I'm sure you just want to disappear. We're here for you, thanks for sharing this. pretty
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Post by tigergirl10 on Mar 22, 2011 16:34:05 GMT -5
feels Like I been robbed of the last 6 plus months of my life. lately my only form of venting is through a computer screen. and now I am made to wait 8-12 weeks more. then a couple of weeks of healing time after that which starts to cut into my fav time of the year Summer. it never feels there is an end in site. only reason I am not worried about this illeostomy being permanent is that I am already hooked back up. and illeo is only so waste material won't pass through the 50 stitches they gave me. I feel everyone is out living their lives, having fun. and everyone has forgotten all about me. or they are too grossed out to be around me. I avoid most social situations. esp that bag makes loud noises all day long. and have to keep my hand pressed on my side firmly all day long when around people. and it still doesn't help. extremly humiliating.
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Post by pretty on Mar 22, 2011 16:37:18 GMT -5
That sucks so bad. I know you may not be in a place to hear this, but have you got a pastor, friend, or counselor you can vent to? Sometimes for me I just feel like venting on this board is not doing it for me. How is your boyfriend handling this? Can you talk to him or his mom about your feelings? Tiger, you gotta take care of yourself and that includes your mental health. You sound so very depressed and I'm a little concerned about you, it's ok to feel awful for a couple days, but then we gotta find something positive for you to hang on to. Ideas? anyone?
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Post by tigergirl10 on Mar 22, 2011 16:52:46 GMT -5
I got off all antidepressants 2 weeks before my surgery. thought I would be bag free and on with my life and don't have to use them anymore. don't want to be on meds the rest of my life. fiancee is coping the best he can with this second letdown. I feel I am failing him too. can't be intimate with him. I know not being able to show any intimacy beyond just hugging or kissing is killing our relationship. I know he is tired of seeing me hurting and having to deal with this disease. before I went into the surgery room, surgeron warned that of the poss of the illeo, but the chance was so remote. he told me it was extremly unlikely to happen. well have the worse luck ever and once again got the short end of the stick. my mom doesn't understand, she doesn't have an ostomy. all she does is yell at me, nag at me and tell me there are worse things and to snap out of it. his mom has a permanent illestomy but she also lives 2 hours away. so it is hard to talk to her about it, but she is the only one who understands what it is like.
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Post by hellsbells on Mar 22, 2011 17:04:55 GMT -5
You have to hang on to the fact that this is only temporary, and you're alive, and soon you'll be well again.
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Post by tigergirl10 on Mar 22, 2011 17:30:08 GMT -5
That is the only thing that is keeping me going. And my fiancé, stepdaughter and godchild who will be 2 weeks old tomorrow.
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Post by KSA on Mar 22, 2011 19:04:07 GMT -5
Awww honey keep on thinking of them. You can make it you are a inspiration to our board. One day you will be posting about your wedding dress and wedding day:)
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Post by chicagogal2 on Mar 22, 2011 19:31:24 GMT -5
Hang in there Tiger! I haven't walked in your shoes but I know what it's like to feel alone and feel down. When I moved to chicago I had nobody except my husband, making friends was hard etc so I know how that alone feeling is. I also know what it's like to be in pain and have to deal with it on your own - we all walk that same path with you. Please don't be too depressed - just take the time you need and we are here for you! You are beautiful and don't think otherwise!
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Post by Karen on Mar 22, 2011 20:17:09 GMT -5
A few weeks ago I was having a very rough day, feeling angry and upset that 2+ years later, my life was still being disrupted by medical issues. An acquaintance put it in perspective for me - 2 or 3 years, over the entire span of my life - is just a drop in the bucket. It's so insignificant in the long term. I know it certainly doesn't seem that way at the moment, but please keep reminding yourself of that. No, it's NOT fair that you woke up with a bag again, and it's NOT fair that your life feels like it's on hold in the meantime, and it's NOT fair that friends don't bother to check in on you, but trust us, you can and will get through this. Be sad when you need to be sad, I don't think any of us could fault you for that, but we've got your back, k?
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Post by JC on Mar 23, 2011 6:29:21 GMT -5
Hey girl. You have every right to be upset about all of this. You went into surgery expecting to wake up without the bag and it didn't happen. That's such an awful feeling. You WILL get through this. There has been progress in your health even though it doesn't feel like it. You are in the process of healing which is forward progress! It may seem like a setback but really, you're moving forward with your health. You are healing. For the mean time, the biggest challenge is dealing the feelings of isolation and let downs from family and friends. I understand the isolation too. I think we all do. We've all lost friends because we keep declining invites out because we feel sick. At least that part we can sympathize with you. I also only have a computer screen to vent to. My family and friends live on the other side of the country.
You will get through this and we are all looking forward to the day that you post pictures of your wedding day. There will come a day when you are rid of all of this! You'll get there!
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Post by tigergirl10 on Mar 23, 2011 10:03:28 GMT -5
I never thought it would happen to me. all my searches on the internet about ostomies 99% were due to chrones, colitis or cancer. never do they talk about an ostomy from endometrosis. sometimes I feel it is a silent disease. if I known I had it, I would of gotten proper treatment and this would of never happened. but it is too late for that now. can't go back. when I had bad periods, gyno put me on BC pills at the age of 18. they never investigated any more of their time medically on it. when I started complaining of severe stomach pain and was bleeding from the bowels late last summer, chrones or colitis or severe IBS was thought. I nearly died in ER before the obstruction was discovered and was officially diagnosed with endo.
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Post by cherry on Mar 23, 2011 10:13:44 GMT -5
Look at how far you've come. I think you're very brave tiger, cos you and your body have fought through every minute of it to come to this amazing point. You're partially sorted, not come as far as you were hoping but we're halfway there. Next op will be the jackpot and you can get into the business of healing. But witht he partial work they did, you're already half there, already starting to heal. One day at a time. They made the right decision and did what they could there and then without causing you further harm by pushing your body too hard. Boy you've had a huge journey, I'm excited about the day you'll wake up bag-free and planning for the future.
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Post by JC on Mar 23, 2011 10:14:29 GMT -5
Why do you feel like you can never go back? Maybe you can think of it as how much your life is going to improve from here on out now that you know what you're dealing with. The hardest part is having to get over this difficult time with the ostomy. I really think once you get past this part, you might actually see your life greatly improve from what it was before. I'm going to tap into my university research data base and see if they have any cases like yours. Maybe it can help shed some light into what your future might hold
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Post by JC on Mar 23, 2011 10:24:40 GMT -5
OH found something! I'm going to post this article in the "articles of interest" thread just so we can keep it all in one place. Go check it out! cjlevett.proboards.com/index.cgi?board=general&action=display&thread=369&page=7If there is any specific search you want me to do I can get it for you. There's quite a few case studies of women who have undergone your surgery and had a colostomy bag. So far from what I have read, all of them have returned to normal and have a huge improvement in their quality of life. Let me know if you want more info! I'll keep digging. There's hope, please don't give up!
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