Iliostomy “Take Down” I need all the help I can get. HELP!!

just4Brooks

Okay.. I’m just about ready to give up. It’s been about 3 weeks or so since my Iliostomy reversal and I’m still not getting the hang of things. Ether I’m constipated and cramping or I cant stop going. I don’t know how often I should eat or what to eat or (at times) if I even should eat. Do I take my Miralx and Lactuloce everyday ? every other day? Or only when needed? Is there something better? AHHHH I’ve been cramping all night and most of today (on and off). I drank Lactuloce at 3am and nothing. I took my Miralx at 8am and then again at 3;30pm and still nothing. My last poop was Tuesday night 20 times or so. I hate this and I need advice from people who have been through it.

HELP

Love ya
Brooks

John23

Brooksie--


Go to: http://www.uoaa.org and post your concerns there.

It takes awhile for your system to begin working properly again,
and taking meds might be confusing your system more than
helping it.

Your insides are bruised and trying to heal, and things have been
moved around....ouch. It just takes time.

The members at that UOAA site have a ton of info, some realistic,
and some not, just like any other forum, but they're all there due
to an ostomy.

Personally, I'd hold off taking meds that make you go or make
you stop going, and give the body a chance to make those
decisions by itself..


Good luck. I hope it all comes out smoothly.

(hee-hee)

John

tootsie1

I'm sorry about that
Hey, Brooks.

I'm taking Miralax every day (twice a day). My issues aren't exactly the same as yours, but I would think taking it on a regular basis until you get things sorted out might be good.

*hugs*
Gail

dianetavegia

Remember Vicky and Annabelle! Same concerns. There's a person on colon club who said it's been 2 1/2 years and they're just getting back to pre cancer normal. I'm sorry I am no help. No bag here... but hang in there my friend!

PamPam2

Brooks
Hi Brooks
It does take time. My reversal was 4 years ago. What helped me was taking/eating a teaspoon of flax seed fiber every day, and a stool softener every day. I stayed away from the laxatives. I was in the ER a couple times so bound up and in pain. And then the terrible pain from straining and aggravating hemorrhoids. Now I am doing pretty good, but I'm not going to lie to you, it took a couple years to get where I am now. After getting regular with the flax and starting on the daily stool softener is when it started getting better. I found that meats and dairy are hardest for me to digest, and too much of either will bring on the diarrhea. I also do much better when I eat plenty of vegetables, and I stay away from black pepper, it burns coming out too, and stay away from things like peanuts and popcorn. I use Omega milled flax seed fiber, but you can even get it at Wallmart in the baking isle. I just put mine in water and drink, chew it down. It has a pleasant taste, can cook with it, put on salads, in yogart etc. After your body gets used to the teaspoon a day you can increase to a tablespoon or two a day. The yogart is good for your bowels also. I do swear by the flax seed fiber, and it is natural good for you, and not a chemical stimulant laxative, which in the long run makes it harder for your body to go naturally. It will take a week or so to see the benefits of the flax fiber, as it is a natural substance and does not work instantly like laxatives. I think that the laxatives may be what are cramping you up so bad. Try to eat smaller portions of food several times a day instead of one or two big meals all at once, the large meals will put a lot of work on your intestines all at once. If you want you could pm me, tell me what you have eaten the past few days, when and how much. I am not an expert, but I did talk a lot with a nutritionist about my problems, and we did get them worked out. Hoping you get some relief soon.
Pam

Unknown

This comment has been removed by the Moderator

pluckey

My family called me
My family called me poopy-face during my adjustment period post-take down.
I was either running to the bathroom, grunting in pain, etc...but it all callmed down.

My reversal was in September and I'd say it took about 3 months to stabilize. I did wear depends at night, just in case i couldn't get to the bathroom fast enough.

My biggest issue was butt cramps- I'd get sharp pains in the region...it would last a while, but eventually subside. I had BMs maybe every 2 days, then eventually every other day then eventually once a day.

I'm really bad at taking medicine and concotions, I just powered thru it. Stool softener, yes, stay on that and I really beleive food will be the regulator. As your system gets used to working again it'll know how to process the food.

Oh I do recall my first successful pain-free BM was after I had eaten at an italian restaurant and ate a lot of bread dipped in olive oil!!!!

good luck poopy pants it'll be OK!!!!

Peggy

khl8

Brooks,
You have to give it
Brooks,
You have to give it more time, I know it is hard to do as other than this you feel great and want to be back to your old self. You are only 3 weeks out.
I personally take Miralax if I have not gone in 24 hours.Just to avoid the cramping, however this is getting fewer and far between. I have found that eating a salad everyday has been a godsend. I have eaten one every day for 2 weeks and I am pooping every day! I almost have myself back to the old "morning poop" that was before surgery. Don't let yourself get uncomfortable, as soon as you think you are plugging up, take a dose of Miralax.
Rember this takes awhile, I am now 9 months out from the reversal. And try to relax, getting your yourself worked up will make it worse. If you have to, start a food diary and log your poops or lack there of to see what the common thing is that is causing you issues.
Kathy

Sundanceh

Couldn't Agree More
Hey Brooks

First thing out the window is your "timetable." I know we all think it will be "plug and play" and back to normal.

But the bowels are the absolute hardest thing to be operated on - even the doctors will tell you that. Once you tinker with them, they have to "learn" to readjust again. You just took a major surgery head on and things will not happen overnight, or even a fortnight.

After my surgery, it was TWO years of the worst kind of stuff you can imagine. And that was just the beginning. It took 2 more for things to begin to get where they would be. That's not going to be your case, but what I'm trying to show you was 2-4 years - that's doin' some "hard time." Criminals don't serve that long.

So, throw away your notions and adjust your expectations - this is literally the "one day at a time" that we often speak about.

Sometimes, I wondered how so much poop could keep coming and where was it coming from?

Eat small meals and nothing heavy. Take some stool softeners for awhile. And clear off the other medication. It does throw the body haywire, when it's trying to figure out what just happened to it and then we throw more curve balls at it with meds.

I gave up all medications and just let the body go where it would. Many nights I was up at 3am just suffering, in so much pain, screamin' and trying not to wake up Kim. Just alone on the toilet with pain and bleeding, and wondering the big word - When?

We'd be up changing the sheets at 3 or 4 in the morning - changing underwear, man, I mean all of it.

I'd get to work and have to go home - multiple BMs until I was bleeding. I'd come out of the men's room soaked head to toe in sweat - people would look at me like "what happened." Would have to race home and jump in a hot bath to soothe those burning tissues.

Some days I could not make it in to work, was just too sick. Other times I'd get there and have to leave within a hour. Other times it was mid-day. And I'd be sick all day and night when I did get home.

Those were some of the days, where I said, "If this is going to be my life, then I' don't want to live." And I meant it too. But as I've told you before....TIME, my friend, TIME!

It's the only answer really. Until then, you're life is on temporary hold - but the good news is that things will get better - and only the body knows when that will be.

This is the part of the race where PATIENCE is the key. You really can't rush Mother Nature - she's going to do what she wants to do and we just have to ride along with it.

I'm just being honest with you - I'm not one to BS about such things. I lost over 5 years to poop, believe me I understand your pain and frustration.

But your insides are busted up from the surgery and need time to heal - it just comes down to that. I had 5 weeks of radiation prior to my rectal resection - it really complicated things and my insides were like "fried bacon" I was told. Plus, the bowel never got a chance to rest from the radiation - through the surgery - and for the next 2+ years - you know you use them almost every day. So I see now why they do temp ostomies of all kinds.

But no matter which way you go - the plumbing is very sensitive down there, as we've all discovered...and Leaky is just trying to figure out what the flip just happened and who's got the license plate to that truck that just steamrollered him.

You can imagine my thoughts on those days when I was totally alone with no one to talk to about my concerns and no doctor's able to help me. I'm so glad that you have us to come and talk to about it - sure wish I did then.

I'm wishing you the best - take it EZ - and just tackle it head on - you're going to come through on the other side.

-Craig

krf

Hang in there Brooks! You
Hang in there Brooks! You made it through surgery, chemo and radiation, and you will get through this too!
Wish I had advice for you, but I am carefully watching your journey and taking notes when Roger has his new friend sent back to the depths from which he came. Perhaps Leaky is afraid of the dark and is acting out from within?
By the way, no name yet for Roger's little hellion. I have a few ideas, but I believe my post would be removed if I used that kind of profanity. For now, I just keep asking the new ilio why he can't be more like Stuey? TO which his response is, well, you know what it is. It is VERY hard to change the bag with Roger's open wound two inches away. New stoma from he!! keeps trying to pour into Roger's innards. I am blocking successfully so far, but the a&&-hole keeps trying.
Don't tell ROger I am speaking so poorly about his new companion. He tries to keep a civil relationship with his stomies. I, on the other hand, daydream about sticking the newbie back in his dark cavern, never to lay eyes on him again.

Hang tough Brooks!!

Kim

just4Brooks

pluckey said:

My family called me
My family called me poopy-face during my adjustment period post-take down.
I was either running to the bathroom, grunting in pain, etc...but it all callmed down.

My reversal was in September and I'd say it took about 3 months to stabilize. I did wear depends at night, just in case i couldn't get to the bathroom fast enough.

My biggest issue was butt cramps- I'd get sharp pains in the region...it would last a while, but eventually subside. I had BMs maybe every 2 days, then eventually every other day then eventually once a day.

I'm really bad at taking medicine and concotions, I just powered thru it. Stool softener, yes, stay on that and I really beleive food will be the regulator. As your system gets used to working again it'll know how to process the food.

Oh I do recall my first successful pain-free BM was after I had eaten at an italian restaurant and ate a lot of bread dipped in olive oil!!!!

good luck poopy pants it'll be OK!!!!

Peggy

LOL @ Poopy pants
Thanks for making me smile )


Life is funny sometimes
Brooks