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Posted 7/9/2008 8:11 AM (GMT 0)
hi everyone. I just received my ileostomy a few months ago (I HATE Ulcerative Colitis). It was done to save my life. I was refusing surgery and the doctors yelled at me and talked me into it...well they actually didn't give me any other choice. Thank goodness, otherwise I'd be dead. I don't know why I was so against the surgery and how on earth I thought I was going to survive without it.

So, how am I doing? Physically --- amazing! Still weak, tire easily, sore. But I don't think I EVER felt this healthy before! Maybe when I was 12. Emotionally? That's another story. I'm extremely depressed. Sometimes I don't even get out of bed. I lift up my shirt, stare at my scar, my bag. And I feel sick to my stomach. I may not be a candidate for j-pouch.  My life has turned upside down. I'm single. 30. With a bag. I've read a lot on here and I feel better knowing how awesome-ly you guys are handling things. Sometimes I think I am doing OK. And I keep telling myself it will get better. But I wake up each day feeling the same. Depressed. I think the few moments that I am happy, I am just putting on an act so my family and friends don't worry. Inside, I'm hollow.

I started therapy and anti-depressants about a month ago. I feel pretty good in the session. But as soon as I leave, I spiral downward again. Sometimes, I wonder what the point of life is. I quit school and turned down a job offer because I was going through all this. I almost hemorrhaged to death. I know there are tons of worse things that could have happened. So what is my problem? My parents don't like seeing me with a bag. My mom, especially. She wonders how on earth will I ever get married. She brings up ex-boyfriends and says I should have gotten married earlier. Crazy.

I have massive headaches and insomnia. I can't breathe right. My appetite has decreased. I am VERY irritable and snappy. It's not just the bag. It's how the disease royally screwed with my head. I don't see myself when I look in the mirror. I just see the bag. Anyway, sorry I'm rambling. I just don't see the light at the end of the tunnel. Thanks for listening.


female, 30, ileostomy 2008

Post Edited (bittersweet) : 7/10/2008 1:00:08 PM (GMT-6)

Posted 7/9/2008 1:00 PM (GMT 0)
Welcome to the site! I, too, had UC and opted for surgery-best health decision I ever made. It sounds to me that you might have PTSD along with depression. Have you talked to your therapist about that? Since you do well in session you might also want to inquire about a group session as a second meeting per week. I know that I was helped immensely by talking in group sessions with other people who were chronically ill. Also check out your local ostomates group. They can be a world of help to you especially in dealing with the negativity your family is giving you. You can find those meetings at local hospitals or online.

Sue
Posted 7/9/2008 3:50 PM (GMT 0)
this site has been truly helpful for me. no offense to your mom, but have u told her that these conversations dont make u feel any better? sometimes we just need to vent to people who understand and can relate, and that's what all the wonderful people here are for, they even have a way of making me laugh out loud (literally) at the pc, when i'm feeling totally crappy (no pun intended).

My mom thinks i should see a therapist, i was going to post on it to get some opinions. She thinks i try to cover up what im feeling emotionally and then it all just comes pouring out at the smallest thing. I've become very aggressive and easily irritated, which was never me. are u saying overall that you feel worse or better with your sessions?

I hope you find relief
Posted 7/9/2008 11:25 PM (GMT 0)
Bittersweet, not long ago, I read an article in "The Phoenix" magazine (Your ostomy group can tell you about it.) about a woman who owns the "My Heart Ties" Company (http://www.myheartties.com). She talked about how she met a man when she was in her early thirties and after a while told him about her ileostomy. He was extremely accepting of it. They later married. She also had a son who he was very accepting about too. The ostomy itself had nothing to do with her divorce from her first husband. It was a very inspiring story, especially for those that are single. You should look into the article. It was in The Phoenix's most recent magazine, but the one before. (I believe they only run 4 times a year.

Life with an ostomy does take time. You'll notice in the next few months just how much freedom you'll have. From experience, my best advice is to always be prepared when you go out. Carry a little kit that contains all your ostomy supplies for a two changes. I always have a small bottle in my purse for times when I need to drain my bag. The more prepared you can be, the less stress you'll have in your life and this should help you feel better about yourself. Confidence is happiness. Furthermore, I've read and heard from others, no one will know you have an ostomy unless you tell them. When you're up to it, go for walks - they'll make you feel better too.

Take care!
Posted 7/10/2008 12:05 AM (GMT 0)
I have had to tell several well meaning people, "You know, that's just not what I need to hear right now." Sometimes I say it nice, and sometimes not so nice. Don't be afraid to say it to your mom or anyone else. Surround yourself with people who are thinking positive, even if you are not.

Try to do anything you enjoy and are physically able to. Let yourself cry sometimes. I think it's healing to get it out on occasion.

I will keep you in my thoughts and prayers.
(((((((hugs from Missouri)))))))))
Posted 7/10/2008 1:55 AM (GMT 0)
were you on pred before you had your surgery? pred withdrawal can mess you up sometimes.
It is hard to deal with having a bag, but it will get better! people in public can't see it, they won't know, and there are SO many things you can do now that you coudlnt'do with UC. I get mad at myself for not going to the dr soonerwhen i first got sick, maybe i could have gotten it under control better. You shouldn't second guess yourself on stuff like that, you did what you thought was right, and that's all that matters.

As for your Mom, i am a Mom, although my son is only 3, it's hard to see your child hurt or sick or whatever, and sometimes things that are meant to be helpful come out really really wrong, and sometimes things that are meant in concern come out even worse! Just tell your Mom flat out, that is really mean and rude.
Posted 7/10/2008 2:36 AM (GMT 0)
Have you been on prednsione the whole time? The only reason I ask is bc I was on prednsione for 1 1/2 years with UC and then got off with surgery. I am 5 mths post op and I know that I have a more clear mind. I look back on when I had UC and almost don't even remember it....like it wasn't even me. So, maybe the prednsione is also contributing to your depression and thoughts etc....just a thought. Be happy, though, that you have good health. I know it is hard. I never dreamed that I would have a bag and much less be happy with it but I am. It is nice to atleast live normal eventhough my body has to have this bag. I sincerely believe that as time passes, you will do great inside and out.
Posted 7/10/2008 5:26 AM (GMT 0)
thanks everyone. I was on Prednisone for 1 year. I was off it for about 5 months before emergency surgery. I am very fortunate to have my health. I think I am going through some self-anger and guilt right now (very unproductive, I know). My mom and I get into stupid arguments these days. I think she feels guilty too. I need to be more firm with her. I'm 30 for crying out loud!!! But after my surgery, I felt like a big baby haha..especially since I moved back in with the 'rents.

praying4healing - I think overall therapy is quite helpful. I had a different therapist at first and didn't feel comfortable with her so I found someone else. It definitely will take time and patience. I haven't noticed any immediate results, but some of the things my therapist says lingers in my head. Like to keep myself busy and do something nice each day. It can be something simple like watching the sunset. Some of these things may seem obvious but it helps to have someone hammer it into your head :) She is teaching me to be more accepting of things. I think that may come in time....hopefully.

Ohio43, thanks for the suggestion. I think it is possible to get married with a bag, but I'm certainly in no mood to "put myself out there" in the dating scene. Whereas before I was at least looking, now I'm "hiding". Hopefully someone will land in my lap! If only it were that easy... tongue

suebear - do you mind if I ask you if you would be equally happy with a permanent ileostomy? I've read varying opinions on the matter. Hope you don't take my question the wrong way.

Hugs to all.
Posted 7/10/2008 5:27 PM (GMT 0)
Yes, I think I would have struggled to accept a permanent ileostomy but like so many other things in my life I probably would have risen to the occasion and learned to accept it. Several jpouchers have had to give up their pouch (for a variety of reasons) and none of them have regretted their choice. If you want the best shot at possibly trying for a jpouch I recommend you have a consult with the top CR surgeon in your area or even travel to see one of them. Not all CR surgeons are equal when it comes to experience so go to the best.

Sue
Posted 7/10/2008 8:43 PM (GMT 0)
It sounds like we had the same experience. I did not have a choice last july. I had a 50 50 chance
to live or die with surgery. Everything happened so fast I didn't have time to think about it. I was
told I would not be a candidate for a j-pouch. I had C.D. and U.C. At first I was very week and long
term predisone use left me with other medical problems. I was trying to be strong for my family and
friends. I found they had a hard time dealing with my surgery. I had a good friend who had breast
cancer and she told me in order to heal I had to let my self mourn.
she said you just had a major part of your body removed and it has changed your life and you have
to mourn that loss. I cried off and on for days and learned to accept my bag. I am med free for the
first time in years and decided to live life to the fullest. I made a list of all the things I want to do and
now I concentrate on that. I still have hope that maybe someday I might get a j-pouch. But if not I
am greatful to be alive and enjoying life. Give yourself time to heal your whole being. Fruitcake
Posted 7/17/2008 2:07 AM (GMT 0)
Hey Bittersweet,
I have been through a few different bouts of sever depression since being dx'ed with Crohn's in 03. After talking to a really good counsellor I realized a lot of it was related to grief and acknowldeging that my life would never be the same.
I am still grieving the loss of the life I once had, and trying to figure out who I am. I do not want my identity to be attached to my disease or the bag of crap hanging from the side of my belly. I had been sick for so long though that its been hard to figure out exactly who I am now - and who I want to be.
I dont like my parents or friends to worry so I spend a lot of time acting happy and brave and strong - but I am lucky to have 2 very good friends who I can be lonely and sad and depressed with.
As for relationships - I dont blame you for not wanting to put yourself out there... I have been of the opinin that I am 'damaged goods' and as much as I knew I was a good person, I didnt think anybody would ever see past my bag.
I am 31 and when i found out i needed the surgery - it seemed like a death sentence.
I am lucky in the sense that it is temporary - and I am not sure how I would cope if it wasnt.
I did meet someone though - I certainly was not looking - it just happened.
I was soooo stressed about him hugging me after our first date and about how I would tell him - but it just worked out and he does not care at all about my osotmy.
I am not sure if reading all of our stories will make you feel better, but keep in mind you are not alone.
If your depression ever gets bad enough that you feel like hurting yourself - please let someone know. I am sure you have fought very hard over the years because of your colitis - and you cant let it win.
*hugs*
Posted 7/17/2008 2:28 AM (GMT 0)
Just remember, you've been given a second chance to have a GREAT LIFE!! You have to grieve for the past...but you will be able to move on. Suebear's suggestion of group therapy is a good one. Take one day at a time (I know!) and try to do one thing a day or week that you couldn't do while you were sick...take a walk, eat a greasy burger or go to an amusement park...anything to get you back "into life". Don't let people "see the bag"...by the way, I prefer to call it a "pouch" for some reason it makes is less demeaning...let them see the HEALTHY YOU.

Post Edited (OHIO76) : 7/16/2008 8:49:04 PM (GMT-6)

Posted 7/17/2008 2:33 AM (GMT 0)
i may have told you this already but it is OK TO BE SAD!!! you have just had a major change in your life, and it's something that is really really hard to get used to. I remember the first time i saw myself naked with this bag i started bawling! i was about 122, scar was nasty looking, bag hanging there, i thought i am the ugliest thing ever!!! but you know what, after a while i quit thinking about it.  Andnow, i even though i still get upset it doesnt' last as long, and most of the time i dont' even think about.  I am 30 too, and i missed all of my 20s sick, so i am trying to make it up now, lol.  At this very minute i am texting someone makign plans for friday night!  i get a little annoyed, thinkign about having to empty in a bar, but then i think, before surgery i could have not even gone to a bar!  when you get sad, try really hard to think of something you couldnt' do before, maybe even make you a list and carry it with you! 

Post Edited (summerstorm) : 7/16/2008 8:37:53 PM (GMT-6)

Posted 7/17/2008 5:33 AM (GMT 0)
What you're feeling isn't so unusual. I had my ostomy back in '89 when I was 28. Though I was already married, I thought my professional life was over. Plus, like you, I was defining myself by this pouch stuck to me. That is completely normal! What really helped me was going to a few local ostomy society meetings. Yes, the meetings were imformative...but the real eye opener was seeing other people who had ostomies. Because most of us would bring our spouses or friends with us, you couldn't tell who had an ostomy and who was there for support. They all looked normal. Why?.....because THEY WERE all normal. It's just that some of them had ostomies and some of them didn't. Just about every city or county has a local chapter of the United Ostomy Association. Ask your doctor or ET for information. And, if you do decide to go...play a little game with yourself and try to figure out who actually has on ostomy and who doesn't. You'll be really surprised and relieved when you realize you won't be able to tell! And, fundamentally, isn't that your main concern? I know it was for me.
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