Three days post take-down and horribly depressed and disappointed

I posted at jpouch.org about the problems I am having: output is coming out of me with no warning or my feeling that anything was there in the first place. Really takes a long time to get clean. People answered that I am being overly optimistic if I think I can go back to work after two weeks at home after hospital, and that it takes a really, really long time for things to somewht even out and not be leaking all the time. Am using these huge hospital pads and feeling like I will hav eto go through the rest of my life as the "poo lady" who can't control things.

I'm almost ready to never write on the forum again, because the jpouch cases here are mostly so successful and like miracle cases. I though I would just speed back to normalcy like Pankcakes did.

B'D,

NO two people are the same on here. What one person whizzes through another may take 6 months or more to regulate. None of us are the same and none of us are medical personnel. Please hang in we all need each other. I have some obstructive thing going on and my new ileo surgeon out and out checked out on me. Thank GOD my PCP came forward. Got CT scheduled for 2:30 this pm so I don't have to go to the ER, nobody likes that. I may be having adhesion reobstruction. MY abdomen looked 8 months pregnant last night and i took pics to prove it.

You are very lucky whether you realize it or not. You are eating and food is going through you. It is TOTALLY NORMAL to have a real DOWN a few days after a surgery especially if you have no control over bm's. So don't be hard on yourself or compare yourself to others.

Also do consider that others who have such quick and near perfect recoveries may also experience some glitches that they may not necessarily mention. Am not saying they deliberately withhold info, but they may just not mention everything. we are all communicating via cyberspace don't forget. Plus all are different in terms of healing.

I can relate. Hang in. WIsh me luck and I wish you luck. Rosemary

i second the notion about not consuming sugar whatsoever. if i eat sugar of any kind, whether it's processed white sugar, fruits, fruit juice etc., it will run right through me. right now i eat a very strict diet that helps me from having diarrhea and accidents.

my diet consists mostly of:

potatoes
rice
multigrain cereal with almond milk
vegan hotdogs(which or pretty good actually)
vegan hamburgers
vegan tacos
cooked vegetables
vegan bread
water and water only

It may seem obvious but i've discovered that what goes into you is going to have a direct impact on what comes out of you. ;)

Hopefully my diet won't change much after takedown (well the first couple of weeks I understand). Vegan hotdogs actually sounds pretty good. I saw some veggie burgers at Publix the other day. I thought about trying them.

I am confused, how do vegan foods help with diet? I've never heard of this, am I missing something?

B'D I REALLY HOPE that you feel better soon, I've yet to go through with my take down but I know that when things suck really bad you just have to keep your head up and keep telling yourself that it will pass. Thinking about you! Don't ever be afraid to try new things either, I'm glad you're at least starting to figure out what helps you :)

Cheer up B'Dereh. I know things sound bad now, but you're in hospital at the moment and things always seem worse. Plus you're only a few days in. I'm sure I'll be in the same situation as you in two weeks and you'll be able to help me. By then I'm sure you'll be in a much better place.

Did you pass mucous each day before takedown or did you rarely need to?

Sue, thanks for that. Really cheered me up. The doctor was just here and told me I'm very typical with all this chaos and that the immodium is important until the pouch starts doing some of that work. Immodium is indeed working, which does wonders for my mood as well. Was reminding me of having uc, running all the time, waiting on the toilet until I thought it was done and then all that time cleaning myself. It really makes a great difference between firm stools and liquid. The immodium drops seem to work better for me than the capsules. Maybe it's cheaper if I buy a lot from an online pharmacy.
With food, I have always been extremely healthy, except for my little romance with chocolate and cake etc. That definitely changes now. Sue it is also good tohear again that Ill be able to eat my gigantic bowls of mixed salads again, which has always been my preferred way to eat, with something on top like grilled chicken, or potatoes or fish, etc., with olive oil and vinegar. So six months without that, it's the time in which I'll only be eating for my jpouch and nutrition.

Ric, sure, in two weeks I damm well better have more perspective on things than I do right now and I'll walk you through the hard parts. Yeah, the mucous, funny you asked because there was none on Sunday and almost none on Monday, the day of surgery, and less than usual on the Saturday. There were always one-two days here and there w/o mucous.
The first poo I had on Tuesday I coujld see was two small pieces with mucous mixed in. The nurse and doc were really happy and said it happened fast, 30 hours after surgery. Mucous is always there, we only see it when we have a stoma because it is the only stuff coming out.
The last days though, I have to admit, did bring back this panic, helpless, chaotic feeling I had during UC flare-ups, we all know those, because of the frequency etc. Of course there is no pain after eating food and the feeling is completely different than with UC.

Maybe this is like when I had the collectomy before starting a new job, I was in total anxiety about starting the job with the bag and people noticing or not. In reality, the issue never existed. Now I'm really concerned about going to work and being able to deal with this kind of fequency, I'm afraid of having accidents and leakages at work, but I supposed tht is what the immodium is for.

Here's another thing I'd like advice on: they are moving me and colleague to the other, modern building where there is a modern toilet with a row of cabins and sink outside the cabins. In the other nice office I had nearly a private bathroom with sink and shower. I would like to be able to wash my bottom in the toilet cabin when I go, it really is necessary to use water for cleaning because paper will not do it. What should I bring with me? I actually don't have a problem with leaving something permanently in one particular cabin for myself.

Thank you Ju!
I'm doing ok with these gigantic pads the hospital provides and I can probably get some to take home. They're good for nighttime, too, especially since I can't move around much anyway because of the stitched wound.

B'Dereh
I saw your jpouch post and I did think it wasn't going to be very helpful to you. It's not that the person responding was being unkind but she was being very frank in sharing her personal experience. Perhaps not the best time to be so blunt, but that's how it is when communicating online I guess. I've been reading that board for a long time and I know that many of those posters have had serious jpouch issues (of course otherwise they wouldn't be there blah blah...). So don't take it to heart. It might be the case that you won't be up and running in two weeks like you'd hoped. It's more than likely that your body will take more time than that to adapt. However, it's extremely likely (like over 90% likely) that you'll be very pleased with the end result. So hang in and try not to think of what you can't do right now but try to think of it as down time and focus on getting better. Good luck. I know it sucks, we all want to be "normal" and the end is in sight for you. Stay strong!

OK, B'Dereh, I read your other post first, so assumed you were doing better than you have been. Just one comment -- try not to think long term at all right now, no sweeping statement about your diet or fears about always needing poo pads.

You just had surgery a few days ago, and what you're doing now is recovering from surgery. You are not addressing long term habits etc. Try to have some trust in the future B'Dereh that you'll work it out.

And you wont' be dripping forever -- that's unacceptable, and if that were to be the case, you'd go back to an ileo. That outcome is unlikely, and would be a loss etc.... but it's not as bad as what you fear, and it's not a good use of your emotional energy now.

If you need to miss more work, miss more work. Here it might be good to think longer term -- say it's 5 years from now, will you care whether you missed 2 weeks or 4 weeks from this surgery? Man tracht, gut lacht, you can't control everything that way.

Hang in....

Well, not having had the surgery myself I can't really say but from the trillion hours of reading I've done, what you're going through is the expected norm. So, hang in there. Also, cute surgeon = good distraction. Beats thinking about poop! No doubt in a few days your updates will sound much more optimistic. Give yourself a break and hang in!

Oh, sweetie! I've been gone for a little while and I got to thinking about you and realizing you must have had your takedown and wanted to check on you. I want to tell you something really important:

As smoothly as my recovery went, around day 3 in the hospital I really just wished a meteor would fall out of the sky and put me out of my misery. I felt like all I did was sit on the toilet and it was so frighteningly like UC that I would sit in there and cry wondering what I had done to myself and why hadn't I just kept the ileo? Where you are right now is completely and totally normal....feelings included. It gets better, I promise.

You may very well be able to go back to work in two weeks, but you need to give yourself permission to take more time if that is what you need. I think four weeks might be more realistic, but you might feel up to it before that.

You *will* get foods back. I can't say how long that will take, but it will happen. You are not going to be the poo lady! If things don't resolve, you will work with your doctors until your condition is in an acceptable place. Please don't be worried or scared. Just rest, try to get more foods in you as you can (increasing my "solids" such as adding bread, crackers, etc made a huge difference for me in the early days!), take care of your skin, and be patient.

As for the dilemma with the new bathroom set up....ask a nurse to bring you A perineal cleansing bottle. They may need to get one from the labor and delivery floor if they don't have them. They are commonly used by women after they have babies so they can rinse off after using the bathroom without having to wipe with toilet paper. It should be something like this:
http://www.overstock.com/Health-Beauty/Medline-Lavette-8-oz-Perineal-Cleansing-Bottle-with-Lid-case-of-50/1929221/product.html?cid=123620

The bottle can be filled at the sink and then take it into the toilet with you. This is what I used until we got our Coco bidet and it was very helpful.

Hang in there, dear. Sorry I missed your first few days. I will check in more regularly in the coming days if you need me.

Leaking is completely normal! I'm 9 months post op and I just started being able to sleep without a pad on. The kegels, at first, can actually make leaking worse. They did for me. The muscles aren't used to working that way. They must adjust and it takes weeks if not months. I stopped leaking during the day after about 3 months. during the first few weeks, when i was learning what the bms were feeling like i wore a panty liner every day. after about 3 weeks it stopped. then i started doing exercise again. Every time i did something where I was squeezing my pelvic muscles or squatting, leak! totally normal! it goes away with time. :) Just use some long night time pads, or depends (i hated the depends and they gave me a rash!) once you get home and maybe invest in a bed pad. I had one I used for like 2 weeks after surgery. I did have one episode after being home for a week where i slept real good and totally let my whole pouch go in my sleep! the bed pad saved the bed and i was able to throw it in the wash and go back to sleep. but i promise, the leaking gets better as your pouch grows and your muscles adjust.

agreed with all, days 3-7 after surgery are the worst. your emotions are on a high so you feel everything more extremely. Get some wet wipes for you bum, toilet paper is like using sand paper. ugh! I buy the wal-mart brand 3 pack flush able wipes. they are over by the feminine products usually. they are the best of all the brands i've tried and the best price! I have a COCO bidet at home and never leave home with out a baggie of wet wipes. I've experienced butt burn exactly 1 time. In the hospital before i went home to my glorious bidet. :) a cheaper bidet option is the Biffy, i believe its $100. Seriously, bidets are going to be on every toilet in my house forever. haha!

2 weeks may not be enough time to go back to work. I'd say 3 is more likely and 4 is ok too. I waited 4, but i had a crappy part time job in a warehouse standing all day which wasn't really plausible. Maybe you could start back part time to see how you feel? depends on how nice your employer is though. Just don't be too disappointed if it turns out 2 weeks was too soon. your pouch is still going to be expanding at that point so your bathroom visits will be more frequent, but who knows, maybe it'll work out!

You can start eating different foods after about 2 weeks. I was back to eating everything after only a month. It depends on each person though. Don't be disappointed if it takes you longer to get used to different foods again. I never eat anything processed, or artificial (trans fats, fast food) but i have much to much sugar. still. loves it. I'm a pastry chef, what you gonna do? I wouldn't necessarily say you need to go vegan, but health wise, less meat is better for everyone. I personally cannot eat any vegan meat substitutes because they tend to be soy based and I'm allergic to soy and don't get my started on how phytoestrogens are bad for everyone that isn't a menopausal woman. But this is a great opportunity to reevaluate how you want to nourish yourself and start over. Surgery is our second chance after all. :)

that bidet bottle looks neat! my mom recommend one of those to me actually to carry around, but i found that after the first few weeks, the wet wipes were fine for me to use away from my bidet at home.

Hang in there! it gets better! and remember, NO MORE UC! Woohoo!