it seems i've gotten only more uncomfortable and sensitive about having an illeostomy over the past year or so. i don't do much of anything anymore. i quit my job before my last surgery in march. and i didn't go to school this term. i just want this all to be over! i keep thinking about the hospital and how i want to go back. maybe it's a drug association. i did enjoy the morphine very much. i'm scheduled to have an illeostomy closure june 11. i can't wait! but it's so far away. i don't want to get a job. i don't want to have to explain why i need a few weeks off to go to the hospital in june. i don't want to explain the strange bulge of a poo bag on my chest to new people.

all i do is gamble. i play poker too much. internet and casino. i've lost hundreds of dollars in the past week or so.

i feel very sexually frustrated. normally i'd be out on the town trying to meet ladies, but- the poo bag. can't imagine it makes me very attractive.

i like eating morphine. i had some prescribed to me because of a strange complication of my last surgery. i developed compartment syndrome in my left leg. i couldn't walk for a month or so and was in the hospital much longer than i would have been just for the illeoanal anastomosis surgery. they made two very large incisions on my leg to relieve the pressure on the muscle. they say i could have lost my leg had they not done that. it was a painful ordeal.

i keep dwelling on the past. in retrospect i've been symptomatic with ulcerative colitis for years but didn't know it, or care to investigate all the problems i was having. you know the deal.. stomach pain, bloody poo, occasional vomiting. i finally went to my doctor with some of these issues. she figured i had hemrrhoids. it wasn't until i developed toxic megacolon that i was diagnosed with colitis. I WISH IT NEVER HAPPENED THIS WAY! i would have been fine living with colitis. i realize a large percentage of chronic UC patients inevitably have this surgery but i don't care! i wan't my large intestine back! i want well formed, pleasant, and continent ****s! i used to enjoy taking a dump so much! then it started getting bloody and painful and i ignored it for so long! where's the time machine! i'm so sorry! for myself! i don't care if i lived a life of going in and out of the hospital all the time with UC flare ups. i like the attention. i can handle the pain. with my condition as an illeostimite i get no respect. people think i'm a freak with a **** bag. won't go near me. i wish i was living with UC.

i don't mind the bizzare scars all over my body. the mainline one, the one on my leg, the stoma. so come june what will happen? 20 loose bloody ****s a day? 1000 things could go wrong it seems, from reading these forums. bring it on. i like the attention. i'm in limbo until this happens.

if you read this- you're as crazy as me haha. i'm going to the casino now for some gin and tonics and poker. i coudn't stand to lose my $100 buy in again. will have to play a tight, careful game.

Man I can see where you’re coming from on this. I felt pretty similar when I had the bag. I never wanted to go out, or do anything. It was extra bad with the loop-ileo, as I also had to deal with the constant leaks and such. I didn’t even want to sleep in the same bed as the wife, for fear on the bag popping off again. It was a really rough time.

However, there is a good ending for most of us. It has been said a million times that people with pouch problems are statistically over represented on the board, which makes sense if you think about it. Personally, even after all the tough times with the bag, I am doing great. I am averaging 36 holes, and 45+ hrs of work a week now w/o any problems. I am finally catching up with all my projects that I had neglected while I was sick with UC. For me it was rough going through all the trauma of the surgeries, but it was so worth it. Hopefully, the payoff for you will be good as well.

I am really going out on a limb here, but you need to address multiple issues immediately before your life spirals completely out of control. I am so glad you have come to this site for some support.
I appreciate (more than you will ever know) the honesty of your posting. However, you are punishing yourself for things that may well have been inevitable in the long run. I am not sure if the upcoming surgery will really fix things for you.
Please take care of yourself and and seek some help, guidance so you may find a place of peace .
Really I am not trying to sound preachy or non-supportive but your e-mail makes me concerned about you.

You really seem very honest with yourself and with us. Thank you for sharing the feelings you have. Many of us have either been there or are there today. What we go through is so life altering that we all probably could benefit from bouncing things off a licensed, qualified therapist. Hopefully, doing this will put things in a more realistic perspective than the one we frequently create for ourselves! The way in which we look at this major life change makes all the difference in the world to its outcome. Sometimes, we just need a little help navigating the road ahead of us. Best wishes for a very positive outcome to your "life travels".

Well mr.stevens, ileos and poo-bags stink big time. i felt just like you do when i had mine. all i wanted was for things to be over. shoot, i still am looking forward for things to be over, and for life to get back to normal, or as normal as it's gonna get. and just to add to your rant, UC stinks, poo-bags stink, surgery stinks, and sometimes life stinks.

but what i hated even more than all those thigs was not being able to leave my house because of what UC did to me. i could not be further than 20 feet from a bathroom at all times, or else i would not make it in time. i had come close to death a couple of times because of UC. so for me, surgery was no option, it had to be done. but after it all, i dont know if i want my worthless colon back. yes, i doo miss the occasional solid poop that felt so good to take. but after it all, i dont think i would go back.

after i had my first surgery, i hated life. i mean, i was only 19, and now barely 20. i still have my whole life to live. but after a while, i figured there was no turning back, so i had no choice but to suck it up, and deal with life. and things weren't perfect. i have had so many complications with it all. but it has been 4 months since my last surgery, and i'm doing ok. not great, but ok.

so my advice to you mr. stevens, suck it up, tough it out. you're almost through the hard part. don't worry about the job yet, unless it's a necessary. manage your money. instead of gambling it away, buy a game system. thats what i did. but overall, stay positive, keep healthy, and have some fun in life.

I'm sorry you're suffering so much. I agree with ja. I had depression and anxiety for years, but I didn't get medical help until I landed in the hospital almost dead, where I learned I had UC brought on by an herbal colon cleanse. (should've never done that! Although I was never sick before the herbal cleansing system I'd started, my mother had lost her colon 5 yrs prior to UC. She has worn a bag since '94). After a year of never going into remission, I said, "take the dang thing out!" I'd had enough of steroids and taking 30+ pills a day and not getting well. I found the best doctor and decided on the J-pouch. By the way, after the surgery, he said he'd never seen a colon as bad as mine. That would explain the 3 blood transfusions I had to have during that one year I was so sick.

Almost 10 years out from my surgery, I can honestly say it's great! So, I go to the bathroom 3-5 times a day and I can't fart (except in the bathroom . Other than that, life is normal. I've not even seen a gastroenterologist in 5 years. (I know that's bad, but God has been so good to me!)

Probably what has always kept me going is helping others--be it through volunteering, or as I've been for the last 13 years, a mom. Have you thought about doing volunteer work somewhere? Thinking about your problems only magnifies them. Focusing attention on others makes your problems shrink.

By the way, I really liked morphine, too. I had bad halucinations when they'd give me demoral (sp). The bad thing is that I developed an allergy to morphine! I'm having surgery soon for fibroids, so I hope they have other pain meds as good as morphine.

Mr. Stevens,
I recently lost my j-pouch after struggling big time with it for 2.5+ years, and prior to that, I lived with UC for about 21 years.

This past 3/11, I had the j-pouch taken out, and now have a permanent/end ileostomy, and am still adjusting.

Physically, I feel great, but I am depressed from time to time, and have some of the exact same feelings/thoughts as you!

I WISH I had a healthy colon and didn't have to deal with this bag, but it is what it is.

I can tell you that for almost my entire experience with my j-pouch, I was on narcotics for pain, and I know part of my depression now is coming down off of them after taking them for so long. Like you, I liked eating them (hydracodone)- they dulled the pain that I had EVERY day, and the buzz was a bonus. It made me happy, energetic and enthusiastic, when otherwise, I wouldn't be because I was so sick.

You look/sound young, too, and it's a whole different perspective than with me, but I remember my junior year in high school when I was hospitalized because the bleeding was out of control and was already taking 60mg of prednisone to no avail. My GI at the time suggested the surgery, and that conversation ended quicker than it started- there was NO way, NO how that was going to happen to me.

Over the years, and after losing a second cousin to UC because he refused western medicine and surgery for his UC, I made the decision. (He developed ALL sorts of complications, and didn't leave the house, except to go to the community pool for over 10+ years. His mom did all his shopping, and took care of anything that required leaving the house.)

For many of the 21 years I lived with the UC, I was in remission. But, man o man, when I flared, I flared in a BIG way- it would be weeks/months before I could leave the house again, and used to take up to 80mg of prednisone to get it to settle down.

Finally, in 2004/2005, after about 18 months or so of being sick, taking prednisone, not eating ANYTHING all day until I got home from work, I was done. Not to mention the times I did eat for whatever reason, and having a couple of the most humiliating/embarrassing blow-outs known to mankind in public...

I can tell you that time does heal, and it will get better- maybe not as quick as you like, but it does. (I'm KNOWN for not being patient and rushing things- your post sounds a LOT like me)

If you ever want to chat, feel free to give me a shout.

Hang in there...

//Todd

We all would like a time machine to go back before we ever heard of UC. Well, that's a nice dream, but doesn't get you anywhere. I sure can understand your feeling of being in limbo until everything is done and you are recovered. It can be difficult to move on until then. But, it also sounds like you need a something or someone to care about other than yourself. When you are depressed and/or suffering from post traumatic stress, it is very easy to tumble into the mode where all you do is lick your wounds and wish you were someone else. I hope this upcoming surgery helps bring you out of it. If not, don't forget there is treatment out there, and support here.

Jan

appreciate the response everybody. thanks. it felt good.

RANT PART TWO

i won $100 at the casino last night. it doesn't come close to covering my loses but it's a start! haha.

i don't know what to do with my life. i've spent thousands of dollars and years of my time working towards a computer science degree at a fancy university, but am now realizing i hate it, and would dread to return. i've considered entering a nursing program, an interest sparked by all my time in the hospital. not sure if that's the path for me either. volunteering somewheres, as someone suggested, would be a good first step. but damn. i've wasted years of my life at this computer science stuff. well, not wasted, but i haven't put the effort into that's needed. i just smoked marijuana all the time and handed in half finished assignment- computer programs with limited functionality- haha.

my real interest is music. but i feel guilty about that part of my life too! i own beautiful instruments, expensive musical software and hardware components. though i've recorded a lot (myspace.com/aron3000 and myspace.com/ponesongs) i still feel this excessive guilt that i'm not working on songs when i should be, or not practicing guitar enough. i work with a very talented individual, and i fear that he'll find someone more productive/efficient to work with and leave me in the dust, without his great ideas.

i want to move out of my home. my parents are great but i feel like i'm stuck in teenage-like marijuana haze. i have access to the medical-grade stuff from a local charity/society. its bad! i smoke it too much. i took a lung function test and my doctor says i did terribly. i excercize a good deal. i want to live on my own. get out into the real world. it would be expensive to afford, especially to live without a roomate, which is how i would like it, and more especially expensive if i were to attend school. i could get a loan. seems everyone is in debt these days. might as well be too. ha.

my friend came over today. he has crohns. and a pretty austrian girlfriend. i am jealous.

anyway. probably going to casino again tonight. i figure friday is a good night to go. it will be busy, which means more poker players, which means more inexperienced poker players, which hopefully means more money for me. anyway.

hey,
when i read your first post i was thinking "wow, i could have written this when i had my bag(except the leg part)." guess what tho...while i still had my bag i was suprised to have a job and boyfriend kind of fall into my lap...so you never know! okay so the boyfriend thing did not last, but he didnt care about the ostomy at all. i think we who have bags are more bothered by them and aware of them than anyone around us--- so many people i told about it had no idea i had one...and hear i thought it looked so obvious under my clothes....
anyways, my first year after takedown was like a miracle. i never had any of the adjustment period everyone else talks about...i started off good right away, only like 5 or 6 trips to the bathroom a day and it got to be only 3 or 4 after a while. i could eat anything. im only on this board bitching all the time now because of some bad luck with abcess/fistula cuz turns out i have crohn's colitis now. but most people don't have that happen....
as for the second post...i moved out as soon as i healed from takedown..and a year later i moved back in. it is so expensive to go to school and live on your own! i have so many loans that if i think about it long enough i feel like i am drowning...plus, i like having my parents around to take care of me when i am sick i am not telling you what to do...but i would make sure i had a steady job before moving out. i know you said you are not working right now.....but i hope you are cashing in on disability pay....i did. and the casino is probably a bad idea if you are saving to move too..
one more thing- stop smoking weed please
hope you're feeling better soon...june is not really that far!

Hi Mr Stevens,
Thanks for your honest postings.
I'm going to chime in with Niki and ja here....I think your ostomy is the least of your problems, it's just that it's the easiest for others to relate to and sympathise with so you focus your frustrations on it. Don't get me wrong, I hated mine and just wanted to die. But I read what you write here and reackon you're doing the same thing - self-destructing. I stopped eating and waited to just waste away, and enjoyed torturing myself as the weight dropped off; you're nurturing your multiple addictions to morphine, weed, booze and gambling. OK, so I'm dramatising, but you get the idea, I'm sure.
Give yourself a break! Look after yourself! Your ostomy will be gone very, very soon and you should be ready to get on with your life again. You're being given a second chance to live life to the full....don't throw it away!

You've been through a lot. I'm with you on the fears about what might happen next--which is impossible to know (and I hate that!). But you're guaranteed to go through a lot more unless you get a handle on your gambling and drug use. Have you considered trying out NA or GA, or spending some of the money you've been putting towards gambling on therapy instead?

I second everyone else here on the ostomy. Mine is about three weeks old. I'm not enjoying it--if I'd wanted an ileostomy, I would have just had an ileostomy instead of step 1 of a J-pouch--but I don't think anyone else really gives a d@@@ (and lots of people know about it).
Your attitude towards it helps to create other peoples' attitudes towards it, is what I'm saying.

Speaking for myself, I occasionally think back to past partners who wouldn't be dealing with this anywhere near as well as my current partner does, but the main thing I think is: "Thank f@@@ I unloaded that person before the hard part came around." I don't want someone who can't deal with this, because this is life, however much I dislike that.

Take care of yourself, and don't let this experience chip away at more of your life than it already has.

I understand you fears and frustrations. You do sound like you are self destructing. You are depressed and probably suffering from post traumatic stress syndrome. You need to get help - I spent 2 years after my surgery on anti-depressants and 6 months in therapy. It was the best thing in the world for me. My J-pouch only lasted 10 days and it wasn't even hooked up during that time. It perforated long before I could get it hooked up. I have lived with an end illeo for 4 years now. And although I still have occasional leaks I am happy and healthy. I work, play and no one knows I have a s**t bag unless I choose to tell them. Your take down is coming soon, but in the meantime you really need to look into healing yourself mentally and emotionally. I hope things get easier for you.

I honestly can say I understand. I'm 18, and all throughout my teen years I was sick with the j-pouch. I turned to drugs and alcohol, cutting myself, disrespecting my body to the point where I'd wake up the next morning and have to be reminded of who I had sex with. I had no self worth whatsoever. I felt like nobody would ever love me. Honestly, I don't know what got me through it. I don't know why I'm still alive. You'll get to that point too, of saying "How the hell did I survive?" I just switched back to an end ileostomy and got rid of my jpouch on march 11th like Todd. I've also had my low points since surgery. Actually, the whole time has been one big low point, but anyways, I understand. And I know that maybe someday, in the far and distant future, I will feel better. If you want to talk, message me. I don't sugarcoat, I don't bull****, and I'm a good listener

Hi,

Yep, everything said above makes sense. And it is good your talking about it, especially 'telling on yourself' about the weed stuff. That will drain the motivation and self-esteem right out of you.

Listen, if you are feeling confused like you don't know where to start picking up your life again you've got to rally your friends, family and a cool therapist to getting you back out there. As for your career it is time to start looking at options that involve helping others, you need to get OUTSIDE yourself now, and start using your experience to help others. You have so many options such as trying to get a blog going about music, disease, or something you like. Start brainstorming ideas for ways to make the career you think you might want. There is no reason you can't come up with a blog like Boing Boing, or something.

Also, find ways to tell your story about your ileostomy. The photos of Mark have changed so much for him and for us. We get the most incredible feedback from people that we were helpful and stuff. All of this stuff helps acceptance and healing.

Holler if you need anything.

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