Coping with Life Changes and Health Challenges

Radical cystectomy Dec 31st '09, 8 weeks prior to that my husband decided to walk out, leaving me devastated. I hadn't been the best wife as I had pushed him away, so frightened about the operation, thinking about myself instead of him. My children (1 aged 16, twins aged 11) have been amazing; I really would have cracked (or maybe I have without realizing) without them. I'm so angry at times with having to have "this bag", often thinking, "Why me?" Fed up with waking up in the night wet as the bag has leaked again (I've lost 48 lbs since Christmas, the stoma has sunk in so they're struggling to find a bag to suit, hence the accidents). I miss a pair of big arms wrapping around me and saying everything is going to be okay. I know I should be grateful I'm alive and I know how lucky I am, especially reading what a lot of people on here have had to go through in their lives. I don't want to come over as selfish and one of those people that thinks they are the only one going through a tough time. Some days I could scream, most days tears are rolling down my face. I want to be happy again, want to smile, a genuine smile.
So many emotions, anger, hurt, loneliness, pain.
Sorry if I've offended anyone.

Tine, don't be silly... You have not offended anyone on this site with your words. We have all been through this and think "why me?" Your problem with the stoma, have they tried a convex base? It is used on people with inverse (inner) stoma. It helps push the stoma out, therefore, less leakage or hopefully no leakage.

I too had the same problem as you with your marriage. My x-hubby decided that my Crohn's Disease was mine until it was under control (it has been in remission for about 3 months). I got CD in 2006... The day the doctors told me I had to have an ostomy operation, my x-hubby said, "It's the operation or a divorce!" As this was my 3rd ultimatum in about as many days, to do with the illness, I thought I would have both.... Really, my love, you need your health and happiness. Please do not think you are worthless or hopeless. What you have gone through, many of us have. It is much easier to walk out than to face up to someone that you cannot handle the situation.

Hope I have helped you. Everyone here helps everyone. Hope you get through this and when you are having more positive thoughts, you can look back and see it wasn't too bad. We all care here...

JAx

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When I was diagnosed with CCD in 2006, I was a single man. I met a lady at a football game, and we lived together for about 4 years. When I was well and working, she would pick fights with me, argue, and really stress me out. The consequence of stress with Crohn's disease is that it flares up and makes you very sick to the point you go into the hospital for steroids and IV fluids, some immune suppressants, and rest. Once I came out of the hospital, I would have to find another job, and the cycle would start again. She had cared for elderly people all her life, and I think she had a need to be a carer with me at all costs.



What I'm trying to convey is, no matter how you're feeling at any time, there are folks here in these forums that do understand. We have walked in your shoes numerous times and understand what you're going through. With all the trials and tribulations in life, and as much as each one of us copes in our own way, deep down we all feel the same pain: anger, low self-esteem, loneliness, feeling deserted, misunderstood, and sometimes just fed up with it all. I know lately I have had a gut full of having this bloody bag hanging off my guts, even though I know it has given me my health back. But I'll get through it and carry on. Reading what others are coping with, trying to picture them typing, understand them, and get an idea of what they are like takes my mind off my woes and helps me empathize with others. One tip I have is to try and keep a sense of humor. If you can laugh at everything that happens to you, then you're halfway to coping with it all. Me, well let's say I'm still halfway there.



Keep ya chin up, girl. You have what sounds like 3 great kids, and a good sense of who you are; with that, you can take on anything and kick its arse. Hugs to ya, stay strong and try not to sweat the small stuff.

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P.S. By the way, that lady I lived with? I left her for my current wife, who I met in a chatroom on the internet. It was the best thing I ever did, as much as some may frown on it.

Well said, Steve... I too am still on my way to accepting this thing. But, as far as some are, I feel I cope more every day.

Jax

Such a big thanks for the support, it's so warming to know that I can chat to people who know exactly how I'm feeling
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Jax
I wear convex bases and a belt, my appetite is about zero so my body is changing so much (for the better in some ways). I really needed to get that off my chest this morning. It's good to know how you came through on your own xxxxxx

Gus
Thank you sooooooo very much. Your words touched me so much xxxxxx

My Ostomy Journey: Jearlean | Hollister

Such wonderful people on this site, huh Tine?  And what they have said about things getting better in time is true.  It's a tough battle.........not only physically, but emotionally and mentally.   But you've got plenty of reason (those three children) to keep on fighting.  I am a single mom of two teenage boys.  I left my ex in 2001 for reasons I won't go into but I and my sons have been much better off for doing so.  In 2006 I found out I had stage III colorectal cancer......so the beginning of that trial.  My sons were 10 and 12 at the time.  I knew I would make it through because of them.  And I have.  Anytime, you feel low, frustrated, afraid, whatever, you get on this site and start typing and someone will be here for you.

I too have had the leakage problems and FINALLY after 2 1/2 years found what works.  But my body too had to go through it's changes after the surgery.  Let me know if you have any questions about convexity.  I feel like the Queen of Convexity sometimes!  HaHa!

XOXO Debi

Hi Tine,

I had my bag fitted in April '08 and at first, it was quite a learning curve (along with all the leaks and bags coming loose and a very odd dream where the bag 'exploded' in the High St and shoppers everywhere were covered in shit and they were all looking at me with extreme displeasure), but after about a year I finally managed to get the hang of things.

It will get better and easier, and no, you won't have offended anyone with your words. If you want to offend anyone, blow your bag up in the High Street...

Cheers, Iain.

Good grief woman, it takes a lot to offend anyone on here - what you have been through is crap, it will take you quite some time to come to terms with it, your altered body image etc etc... you just vent away my lovely, we can take it!!!!

Take it a day at a time and it will get better, we promise... chin up, Rachel xxxx

All I know from my experience is that it takes time. I had my surgery last May and I have two bags side by side with my belly button squeezed in between. My stoma went inside too and I even had a revision several weeks ago, it went further in due to adhesions. I use cement and also a eakin seal and a convex. It lasts 3 days. I was soaked in pee Sat AM, on a day I wanted to sleep in of course. My boyfriend left me just before my big surgery in May. I am man shy now. Feel insecure sometimes, HATE the bags, or the way they look on my body. Developed a fistula in my intestine that drains nasty, acid, bile stuff out my vagina and causes my skin to peel off. I havent found any cream that can compete with it. Need a skin graft! HA. Dont have much butt left anyway, they took it off too. I lost 30 lbs and am slowly gaining some back, that means eating, that means drainage. Whats a girl to do? Hang in there, we are all in the same boat on this stormy sea!

Hang in there, Tine, you sweet girl, you! We totally hear what you're saying! ...and Gus was right about what stress can do to people with Crohn's, by the way. I'm here to support that fact, that's for sure...but of course, anyone with all the problems we've all had here can really suffer when extra stress enters the mix of already difficult situations in our lives...and I, too, had problems with someone bailing on me when I was sick after being together with the guy for seven years, so I understand...and I also know what it is to miss strong arms around you at night (sigh). I want that again too...oh yeah, I long for that again so much. I am SO done with being alone.

I read each of the replies to this post, and we sure do have some awesome people in here
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We're all in this together, hun...sweet sisters at your side, and then we have cool bros like our Gus and Lobster to step up to not only support but keep some humor in the mix...it's great that we're here for each other...don't worry about what you say, you just go ahead and share whatever you want...it will be OK, you've got us now to help you
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~Hugs from your Doe

This is the place to let off steam and vent and just say what you have to, tine!

And when you need big arms for a hug -- that's here too -- maybe not as physically comforting as the 'real thing', but it sure has made a difference to me.

Hey Tine, I hope today is better than yesterday and tomorrow a little bit better yet, this malady we have is something that takes a while to come to grips with. For over six years I went through hell and then I found this forum where I could vent my ass off and everybody was so understanding and I find others who went through a hell of a lot worse and I almost felt guilty for my bitching, still, I was given empathy because we've all been there.

Please, please don't hesitate to talk to us, we understand, Ok Tine.

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Ed

Tine! Vent away, Babe! Nobody on here takes offense—it's a sharp learning curve—but you'll get through it. As long as your internet connection is working, you will always be in contact with members of this family.
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A big
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hug & best wishes from the UK side of the pond.
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Thank you all so much.
Now I know where to come when I'm feeling down again instead of keeping it all bottled up.
Big hugs to you all.
xxxx

Oh sorry, Tine -- just realized that you are in the UK, same as me... So the hugs didn't have to travel far... lol...
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