Im so not in a good mood right now!!!
Tonight i had planned to go to a concert with some friends, we went out for dinner and then made our way to the concert. While standing in line i did a usual check of the bag to make sure everything was in place....well sure enough that stupid little thing decided to leak!!!!! So i went to the washroom to check it out and sure enough....it wasnt a huge leak so i stuffed some toilet paper around it and went back in line. Then about 10 mint later i felt so hot, i thought i was going to faint. So i ended up not even going to the concert.

Im soo mad, ever since the first surgery i just dont have the energy i used to. I know 75% of the time its really not that bad, but when its bad its really bad and it sucks and i hate it!!!! My last surgery has been hell to deal with, its taking soo long to bounce back compaird to the first and i was sicker then a dog the first time.

The day before my one month check up i started getting really bad stomach pains, so when i saw the surgeon he said he thought it was ulcers. So he gave me some pills to take and it has seemed to clear up but now im thinking that maybe it should be tested, incase the ulcers are really a sign of crohns. blahhhhhhh...... ill have to make an appt with my family doc to see what she thinks.

I cant wait till all this stuff it over. On a happier note my takedown is scheduled for March 28th!! I really cant wait, but i know then theres going to be all that stuff that comes along with takedown to deal with.

Although this doesnt sound happy one bit, im really not usually at all this bitter about everything. but having to come home tonight set me off a litte.

You're a lot braver than me. I never even left the house while I had my bag. It was an awful time for me and I didn't deal with it well. It will get better, and with your strong attitude you will do great. Keep your head up, I wish I knew about this site and all the people out there that went through what I went through while I was going through it. We all understand how you're feeling, and most of us have been there. Being able to go out now and not worry about it is great. The only thing I hate while I'm out is the noise I now make in the bathroom. But, I'm starting to get over that now too, and it makes me giggle to watch people look at me when I walk out of the stall in such surprise that such a tiny person just made all that noise! Anyway, it does get better and good luck to you on your takedown.
Rani

Just hang on in there. Sounds crap that doesn't it? Well, I could have said everything would always be fine - but then you would know I was lying. The truth is that you will probably experience good and bad days and all shades in between. Just for the record, I had my pouch contrcuted in 1989 in England where I live. I am currently in DC doing research until end of March. And, I have had quite a few bad days recently. But, you know, you are doing the right thing by saying how you feel. The worst thing to do would be to become insular (which is my recurring fault). But above all, don't be too hard on yourself.

Good luck

Ashley, It doesn't sound happy or bitter....it sounds sad, and you have every right to be sad and frustrated. We all have days like that. I give you credit for going out and doing the things that you do. So don't beat yourself up over not being up to certain things, these surgeries take alot out of us. I truly hope that you have an easy takedown and that your pouch adapts easily.

janna

Buy a roll or two of pink Hy-Tape, and carry one with you. It's like duct tape, but gentle, and it can sometimes save the day!

Ash, When I read your title to this thread, you cannot imagine the mental image I got. Scenes of Friday Night Frights!! Hopefully, you have gotten over that frustration. I know how maddening it can be to really think you are good to go as far as socializing, only to find that your body puts up road blocks to your fun.

I think that the worst part of the process of this surgery is that it takes so long to feel like you are in control of your life again and can function the way you want. It is bad enough to have bowel disease that already robbed you of many precious days, weeks, months...but the cure is doing it too?? All I can say is, I know, I know...it does get better. It really, really does.

Jan

Ash,

Any percent of suffering can be all consuming and discouraging. But TD is right around corner.

And I will tell you that I was starting to think I would never have my energy level back and it scared me to go in TD surgery the way I was cuz "engerywise" I felt half dead!!

But after TD I had felt better than I had in years! And immediately. I really think it takes a lot out of your energy for your body to be "running on an ileo"

I hope you have the same experience because it SUCKS to have no energy. (not to mention leaking and living with that crap!)

Hope you feel better real soon

Laurie

Ash, I noticed in your post you are seeing your surgeon and family Doctor. Do you have a G.I.?
They would be best to diagnose these problems you are having.

Hi Ash,
If it´s any consolation, I can really relate to what Laurie said about energy levels after the TD. I braced myself for Hell Revisited (I visited Hell in a major way in step 1!!), but it went so well, you just wouldn´t believe it. No matter how much butt burn I had, and how many BMs kept me running the first few days, nothing could bring me down. I was on a real high - and I wasn´t on any drugs :0) - not even paracetamol. The relief of no longer worrying about leaks, ostomy equipment stinging my skin or the ileo making farting noises when I was talking to someone and hoping to be taken seriously....it was like being released from prison! Better times lie ahead for you, I´m sure.

Bill
I dont think i have a GI. But my doctor did make me an appointment with the lady that did my colonoscopies...is that the same as a GI?

Hey Ash,

I had all my 3 surgerys in 1, so i didnt get a bag...and then takedown.
But if my own experience is anything to go by, i wouldnt hope that the light at the end of the tunnel is your pouch.

In my case, its the worst decision i've had made for me in all my life. I'm 25, i did what 25 year old woman do. I shopped, I exercised, I found pleasure in food, in sex, in social interactions with friends.
That was all till the pouch, i'm a small minority of ppl it just doesnt work that well my surgeon told me.
I so hope that your in the majority.

I'm now contemplating getting a bag, and need all the personal experience of ppl my age that live with it permanantly...

Thanks K

Hi K,
I´d imagine the 3-in-1 surgery was a huge shock to your system. How come they didn´t do it in stages? I was told the stages were to let the body adjust and heal, so when you didn´t get that chance I suppose it´s not surprising that you´re having problems. So sorry to hear the pouch isn´t helping you. Good luck in reaching your decision (bag or no bag).

I had a one step surgery without an ostomy and I had a great recovery. After living with UC for over 20 years, I got my life back. There are different schools of thinking on the different types of surgery; but the most important link is finding a surgeon that is very qualified in the one step and has performed many of them successfully. And if someone can have the one step and not have the ostomy, I think their recuperation and recovery is much easier. We have a member here that had his one step surgery 5 months ago, and he is now back at school. I think it's great!!!

I don't really know your circumstances, but maybe you need to get a second opinion or see another surgeon/GI to see if they can help you with your pouch. There are also other alternatives to a permanent ostomy, you could check the boards under the k-pouch group. The kock pouch is an internal pouch that you empty with a catheter. I am really sorry that the pouch has not helped your life, maybe you could expand on your problems and some of us here might be able to help a little.

Hope things get better,

janna

Hey Ash-
I saw your TD is March 28th! I am excited for you. I know ileo-leaks are never fun but the great thing is soon they will just be a memory.Life after TD for me has been amazing!
Good luck with the next couple of weeks!
I will be thinking of you!

I second Kar´s posting. I´ve got a life again after my TD! I wish you the best of luck, Ash. I hope you´re one of us lucky ones who does well with a pouch.