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Posted 1/13/2009 11:30 PM (GMT 0)
Hi, new to the website and also finally diagnoised with Colonic interia from many years of slow transit constipation. Yesterday, I consulted and was evaluated by the specialist who have recommended a Total Colectomy.

I have read some of the post regarding this, but still hard to find others that would relate to the begining process, like:

1) When you meet with the surgeon is he the one that gives you a more detail account of what's going to happen during the procedure

2) Does the surgeon also schedule the procedure, and if he/she does, can I opt for a month that would work best for me?

3)What things does one have to do to prepare for this type of surgery

4) I have severe scar tissue will they need to remove the scar tissue also to remove the entire large colon?

Just a few questions I have and hope someone can help.

Thank you

Posted 1/13/2009 11:48 PM (GMT 0)

1) When you meet with the surgeon is he the one that gives you a more detail account of what's going to happen during the procedure

2) Does the surgeon also schedule the procedure, and if he/she does, can I opt for a month that would work best for me?

3)What things does one have to do to prepare for this type of surgery

4) I have severe scar tissue will they need to remove the scar tissue also to remove the entire large colon?

Hey miracle! Im glad somone finally diagnosed you. I know its really annoying when you keep getting test after test after scan done and they dont have a clue what it is. I went through that for 8 months after being diagnosed with Pancolitis. I just had my temp. ileostomy surgery Nov.19,2008 and am SO glad I did. Im so much healthier now. Im not sure what colonic inertia is but ill try to answer your ?s as best I know =)

1) My surgeon was the one who explained in what they were going to do, what they were going to take out, how long itll take. It really put my mind at ease. But sometimes they leave some things out (like i woke up with an NG tube they didnt tell me about) but by reading on here and asking ?s people will tell you from their experience. So if you have any ?s at all, ask =)

2) Yes, he'll be the one who schedules it for you. You can ask for a certain month and im sure he'll be okay with it. I wanted mine done asap and i only had to wait a little less than a month so i think it all depends on how busy he is.

3) I had to prep like I was getting a colonoscopy. Drink the laxative, go on a liquid diet a few days before..same as a scope =)

4) Im not sure about that one.. I would think they would have to take the scar tissue out.. Someone else will be along to answer your ?s and im sure youll get it answered in no time =)

Good Luck with everything and hope it all goes well for you!

Posted 1/14/2009 1:51 AM (GMT 0)
 

 

Hi

 

I hadt my total colectomy two weeks ago.. i met with the surgeon two weeks before my surgery and it all happened that quickly for me... but i have been thru all the tests for the last 6 months.. when my gastro made the decision he couldnt help me anymore.. i met with the colorectal surgeon.. she explained the surgery to me., the risks, the success rate she thought i would have which was only 50% for me because they fear i also have slow transit in the small bowel too.. besides the gastroparesis... but as sick as i have been.. and as bad as it was getting... i had to try it... so can you wait till its when you want  - im sure as long as your health isnt being compromised  - absolutely you can..... i needed to get mine over with now.. because they want to do a 2 level lumbar fusion on me in february - so i have to hurry up and heal and start over ... ugh!!!!! 

 

the pre-op at the hospital explained a little most of my questions were what would it be like in the hospital and after.... so at two weeks out.. im still on here trying to get information as you are..... i cant say at this point if i made the right decision with the 50% chance i was given.. its just way to early to say....

 

i stayed three nights in the hospital... cathedar was in two days.... the first time anything passed thru the bowels in the hospital it was a lot of blood.... perfectly normal i was told..... i did have a hard time with finding things i could eat.... as the 15-20 time i run to the bathroom is a bother and keeps you from wanting to leave the house... but i read everyone is different and that can calm down as i heal more.... and im sure i can aggreviate it by not eatting the right foods... when i left the hospital they send me home on a liquid diet and then the second day home switched to a no fiber diet....

 

if there is anything else i can answer for you please let me know...... i know its all scarey - i found this site after my surgery... i wish i had found it before......

 

tammy

Posted 1/29/2009 10:49 PM (GMT 0)
Hi I'm new for the ride. I too tried ALL the usual laxatives, then the zelnorm, till pulled, then 2 colonoscpy's in the same month,THEN a barium enema, only to find (4 DRS later) I only needed to take 1 (ONE) pill the stiz marker.....
This showed my large intestine was not moving, soooo, I am going in on the 9th of FEB 2008 to have it removed,. Down time in hospital approx 3-4 days if he cuts and clamps. If lipo (3small cuts) 5-6days in hosp VS 1hr under or 6hrs under,
I opt for the larger cut, 1 hr, 3 dyas in hospital, 1 month down time (I do daycare)
Thanks for listening, the 2yr olds don't care but 3yrs are interested....
Caeol
Posted 1/30/2009 6:39 AM (GMT 0)
carol,

i wish you the best luck and success with your up coming surgery.
please join us at the "TOTAL COLECTOMY PART 20" thread, where all the girls with colonic inertia are, and keep us posted on your progress.

best wishes to you!!
Posted 1/31/2009 6:14 AM (GMT 0)

Hi miraclelayne and welcome,

I'll try to answer as much as I can for you:) 

Your surgeon will schedule your surgery. 

You usually can pick when you want it as long as it's not right away as most surgeons are booked, so if you want it in a couple of mos. you can most likely pick the date.

If you haven't had all of the pretesting for inertia, your surgeon may require you to have it:sitz marker, analrectol manometry, etc.

Get your housework done, shopping :) there's lots of great information on the Total Colectomy Part 20 thread, but honestly sometimes the less you know the better it might be.  I went into this whole thing with the mindset of this is going to fix me and I am finally going to be better.  I read about 5 posts before my surgery so I didn't really know what things could possibly happen and I was very mentally prepared for the surgery...my husband on the other hand cried 3/4 of the way there...we had a 3 hour drive to my surgeon/hospital...so I spent my ride telling him I was going to be fine :)

And I was...when you read my post on the bottom you will see all I've been through so you will know that I too have scar tissue issues.  Fortunately for me I have most of mine removed 3 years ago but my surgeon still insisted on doing an open surgery because of scar tissue because they have to remove it, it just makes for a longer surgery.

I was in the hospital for 5 days, had an epidural for pain control-ask about this-it's the best-also ask about an NG tube-you don't want any surprises when you wake up...that was probably the worst part of the surgery-did have 20+bms to begin with, am now down to 3-8, am still on a low residue/fiber diet-have NEVER felt better-haven't had ANY complications :) went back to work after 6 wks.

Just to let you know mine was a subtotal because they left 2 inches of the large intestine.

If you have any more questines, ask away, and try not to worry...really be amazed at how good you feel.

Blessings, prayers, and peace

Posted 1/31/2009 6:30 PM (GMT 0)
Hi Miraclelayne,

Thought of a couple more things as I was posting so late last night and kindof didn't have my whole wits to me.

If you have an ipod...take it with you to the hospital...it will become your new best friend :-) ...also I didn't mean to not read the posts on the colectomy site...because you will NEVER find a BETTER group of loving and supportive people...I just meant that it is sometimes better to go into things without knowing what can "possibly" happen...then you are not as stressed and your resistance is not down going into the surgery...that way you have a better chance of healing quickly and............when things go well you didn't anticipate otherwise smilewinkgrin .

The only thing my surgeon told me going into my surgery was that I had a chance of having a temporary bag but he's only had to do that once.  I told him, then you won't have to do it again and all the way to our car I told my husband that if I wake up with a bag it's my incentive to get out of bed and my doctor had better run because he's in BIG trouble.  My husband assured me it wouldn't happen and from my preop visit until surgery I just put it in my head it wasn't going to happen and I prayed A LOT!!!!!!

So......get an ipod if you don't have one...try not to worry so much...have postive thoughts...and say LOTS of prayers wink

Blessings, peace and prayers to you

Posted 2/1/2009 7:18 AM (GMT 0)
hey Judy :o)
how are you doing? thanks.... it always helps to know as much as possible, but what's an ipod?? couldn't find it in the dictionary.
thanks for all the info you provide us!
Posted 2/1/2009 7:36 PM (GMT 0)

Hey Hodaya,

It's an electronic device that holds music/books on tape/tv shows that you can download from your computor or CDs, etc; my kinesioligist told me to get one before my surgery and now I'm totally addicted :) I take it everywhere...to work so when the little sweethearts leave and I'm still at school for 2 hours I listen to it, and to all my appointments so while I'm waiting in the waiting room I have something to listen too.  Several of my doctors have asked me what I'm listening to when they enter the room so then we start talking about our music likes and dislikes...it makes for a nice connection with people too :)...sooooooo if you don't have one...I highly recommend one smilewinkgrin

Hope everyone is doing well...I continue to pray for all of you:)

Blessings, peace and prayers

Posted 2/1/2009 8:05 PM (GMT 0)
sure is a great idea, Judy, thanks!!
Posted 2/2/2009 2:48 AM (GMT 0)

Hodaya,

Anything to help you girls and guys too smilewinkgrin !  I just want you to feel as good as I do!!!!

Take care.

Blessings, peace and prayers

Posted 2/7/2009 7:52 PM (GMT 0)
turn  Hodaya and all others with good advice.

I am new with the computer, I can't navigate around,

I went to chat room, nobody was home lol

I go mon am for large removal, in ut. My dr is the best, and has answered my questions 

to the best of his ability.  (Not sure on foods after) I have a daycare, so the potty is

a main part of my day lol!

How long will I need to plan on my assist doing all the work?

I know I can't lift (and to my suprise, do stairs)

SOOO we know that means no sweeping vaccuming, moping etc...aaww

I am taking laptop with me, so I won't be bored when not sleeping....any more news.

I thank you all who have been brave and gone before the rest of us!

Carol

Posted 2/7/2009 8:39 PM (GMT 0)
GOOD LUCK TO YOU, CAROL!!!

surgery in just 2 days.. i wish you greatest success, smooth recovery and NO complications!

i haven't had surgery yet. hoping to hear from my gi in about a week from now about their decition concerning my surgery. they're having a meeting about my case on this neer friday. am impatient till he gets back to me...

anyway, good luck and keep us posted.
Posted 2/8/2009 2:31 AM (GMT 0)

Hi Carol,

I truly wish you the very best on Monday; I will be praying for you.  As for the diet...I continue to be on a low residue/fiber diet, my surgery was in July...most aren't on the diet for this long but it works for me...healing takes a LONG time...you may be healed on the outside, but inside it takes six mos up to a year...I went back to work full-time after 6 weeks and I teach 1st graders...yes I was VERY tired for several weeks but you persevere...I also co-teach so it helped to another person in the room...I also hired someone to do my housework for the first 8 weeks because thihs surgery has a high rate of getting a hernia...I was definitely not going to risk that...I took EVERY precaution due to not wanting to miss ANY work...I only get 10 days a year and for the last six years I have had to use then and borrow many from the sick bank so my goal this year is to not use my 10 days :-) ...if you have an ipod, take it with you...it helps during the night to block out all the hospital sounds...I am now TOTALLY addicted to mine...sleep with it every night...my husband calls it my boyfriend smilewinkgrin ...the bathroom will be your best friend for a while but before you know it, things will slow down just watch what foods you it...it really makes a difference...use WIPES instead of toilet paper...they will definitely be your best friend yeah ...you might also want to keep A&D ointment on hand in the beginning...thiings get pretty sore at first...sorry but just being real...

Just want you to know that this is the BEST thing that has ever happened to me besides my husband and daughters smilewinkgrin and I didn't have any complications...I had an open surgery that lasted 3 1/2 hours, was only in the hospital 5 days and ...if you can get an epidural for pain control, get one...it's the best...they put it in following the surgery while you're in recovery

If you have anymore questions, just ask, I usually check this site 3-4 times during the weekend...I'll be thinking of you tomorrow as you are doing your prep sad

Blessings, peace and prayers,

Judy

Posted 2/9/2009 7:32 AM (GMT 0)
Hi everybody.

My name is Amanda, I just turned 24 years old last week, I reside in washington state.

I have been reading everybodies stories and thought id share mine, maybe get some feed back if I'm doing things right.

I started having constipation problems at age 18. My reg dr put me on prozac for depression, and sure enough I was able to have bowel movements then... didn't last long, and I found myself stuck in the same rut. I was referred from gi doc to gi doc, apparently I was too complex for them....finally was given a doctor who knew what he was doing. I have been through all the tests possible...I've had them all since 2007...can't remember the names of most.

Colonosopy/endo.....no blockages

Got to eat a radioactive egg salad sandwich. (Was so horrible I bargained with the nurse to let me only eat half and he let me. Hahaha)

Got to be lucky enough to drink a ton of barium, get xrays to see how long it took from my stomach to my large intestine.... after 5 hours, I wasn't even done yet....I left anyways...that barium ended up hardening in my intestines, 14 days later and 5 boxes of laxatives....I decided to get a colonic. Broke it down enough 2 allow my lax to work.

The infamous marker test (was horrible!).....all markers hung up in my large intestine as predicted.

Had a ct scan, more barium.

Was given miralax, amitiza, even zelnorm. No luck at all. Senakot doesn't work. Only exlax. I'm up to 26 pills everytime I need a bm.

After all these tests, my doctor said I had colonic inertia. He was trying to make sure I did not have CIP.

Right after that....he retired....wonderful..... I ended up with the only gi doc left and its been a year and a half since I've started seeing her and it seems I'm getting nowhere.

She asks me numerous times to try to take 2 laxatives a day everyday and that will make my bowels move. For all you people who have to take or have taken laxatives, you know taking less than what will work will put you in agonizing pain. Who has time for that? Or even taking stimulant laxatives everyday???

She persrbied me zoloft and trazadone feb to see if that would make my colon work....nope.

I then asked for surgery. She gave me the run down about how surgery isn't a good option since its permanent. (Well duh lol)

I then was diagnosed with bi polar disorder july 2008. My gi dr said she would not let me move forward until I tried medication that worked, and to see if that would make my bowels work too.


I ended up getting diagnosed with adhd, severe depression with anxiety 2 months later ...I was misdiagnosed ...mother had terminal cancer.....lasted 10months..she had passed away sept 3rd, most likely the emotions from that had a big impact on the misdiagnosis.

So finally my gi doctor allows me to see a surgeon for a opinion. They put me on ambien, zoloft, adderall. She wanted to see me after about 8 weeks to see if the meds my therapist gave me would make my intestines work. (See a pattern?)

Ofcourse they didn't....I see her again....she decides she wants me to do another marker test....after 5 days I took laxatives...they barely worked...so I took the 2nd xray. I told my doctor that I took lax and she kept saying "the markers are gone, you can go to the bathroom"....aaaaarrrggghhhhhh

So I finally got another marker test....they made me physically come in so they could see me take the marker pill. Gave me only one xray sheet, saying if the markers don't pass why day 5, they'll give one at day 7. I said they won't pass....she replies "you don't know that"..yes I do......

They didn't pass.

THEN she set me up for a anal rectal managometry ? She said this is the last test and we will discuss out options.

I did this test 2 weeks ago, they test your nerves in your rectum to see if they will work properly. I got the test results back, it works fine. I told the surgeon who did my test the run around I've been getting from my dr, and he said he was going to send her a note saying a sub total colectomy is next.

I am supposed to see her tuesday to discuss what's next, but apparently she fell and is out for a month. So I made an appointment with one of the new gis there for tomorrow. I hope she can go through all my stuff and give me the green light. Cos my regular gi doctor has issues with colectomies.....she argues with me that daily stimulant lax will work. But she doesn't realize that I'm tired of the pain, bloating, vomiting, nausea all this causes me. I want some relief so bad.

Does anyone have any tips for me??
Posted 2/9/2009 11:52 PM (GMT 0)
ive been reading thru the threads. ... how many people that have had colonic inertia or a total colectomy have had endometriosis also!!?? i found that interesting as i was reading that someone had mentioned here they had endo/. and scar tissue problems.....

i had endo also... had a total hysterectomy at 35... had surgery last year to remove appendix and they ended up removing a belly full of adhesions .... with the pain i am having in my lower right abdomen my gi says it could be scar tissue.... just had my colectomy dec. 30... seems early to have scar tissue... i assume she would of removed any she say but i dont know i had laproscopic colectomy....... but have terrible terrible pain in that lower right area.... i had it there before but its worse since surgery.... they have thought it was small bowel motility or this was the first time he mentioned scar tissue... i see him friday.... see what happens

little scarey though, found out today i have 5 weeks more to recover from the colectomy i had 6 weeks ago. before they do a double lumbar surgery...... im worried how the "new" bathroom and intestinal stuff will act during this one..... luckily meds slow everything down... but not sure if anything would slow it down enough for a back surgery ....... oh well one thing at a time... see what the gi thinks this week..

but this endo thing has me curious....??
Posted 12/18/2009 8:33 PM (GMT 0)
Hi everyone, its Carol, from Feb 2009

Well I had the subtotal colectomy, I was one of the cases that went CraZy! I have been in the hospital 8 times since....Blockage/kinks/everything went wrong! I hate the way they say you will have to change your diet, They don't tell you you can't eat!!!!!!

No red meat, lettuce, fresh fruits, raw veggies, soda, choclate, red wine, nothing fried,

Needless to say, this has done wonders for the weight!

It's been since july that I have been in the hospital (keep fingers crossed)

Just needed tovent as the holidays come, and I pass on all the goodies!

Carol

Posted 12/19/2009 1:58 AM (GMT 0)
Carol, I am so sorry the surgery has made you worse! UGH I also have colonic inertia and anismus, which is an outlet obstructive disorder. I am miserable tonight because I can't poop and can't crank up the laxatives because I have to work tomorrow. But, even with tons of laxatives on board, I still can't get the poop out without acrobats and hours and hours on the toilet. I spend probably $50.00 a month on laxatives and suppositories! My laxative of choice is miralax....then of course, glycerin suppositories. 2 doctors have recommended that I get a total colectomy. 1 doctor said the total colectomy would help with the colonic inertia, but I would still be unable to get the poop out because of my faulty rectum????? I am at a stand still as to what to do, but I DO NOT want to do anything that could make my life worse than it already is.

I did read that people that have total colectomies have a 5% to 50% of having small bowel blockages???? That scared me. Why can't you eat? And what do you eat? Do you still get constipated?
Posted 12/21/2009 4:13 AM (GMT 0)
Amanda,

Many of those on the total colectomy thread have had their colon removed and the small intestine hooked to their rectum. Some of them have rectal issues so everything not perfect, but they are a lot better in general. If your rectum works and your colon does not, then it sounds like the ileorectal anastomosis would be for you and you would do fine.

Everyone else gets the "run around" and "It's all in your head" routines too. You are not alone. Check out that thread and you will see you are not alone.

Best wishes, Rosemary
Posted 12/30/2009 10:00 PM (GMT 0)
Very good advice, we are the same/but diffrent.  The constipation is gone, with the surgery. My Dr says you can always stop too much, its when you can't go they can't help..... Lomotil helps with too much for me. I follow the diet to the letter. (Out of fear of blockage) I won't even eat mashed potatoes, because of the gas..I had the tube down the nose, into stomache to release the gases, into the smallintestine, to clear way..(2 days in the hospital) nono No cheating or there will be consiquences.

Carol

Posted 1/13/2010 2:07 PM (GMT 0)
Hi Judy,
i have found what you tell people on here very uplifting and postivie..which goes a long way and makes all the difference. thanks !
i am 24 have two children who just turned three and four. they are the best thing in my life :) i am scheduled to have my entire colon removed and things attached on the inside. on feb 1st. i have suffered since i was little..but really really suffered the past three years...to much to go into. i am having this done at Mayo clinic for that i feel very fortunant. some test have said i have colonic interia..some not. all tests said i have sever sever pelvic floor dysfuntction. i have gone to hell and back along with evey treatment expiermental or not to fix my pelvic floor. now i'm doing seven treatments a day..and my pelvic floor is good!!!:) i really do not want a bag. but even with my pelvic floor better i'm still not having bms..as in months without one so now the surgeon aggreed to do this operation with little confidence it'll work. but i do have faith that it will, i have to. i'm out of options and so are the doctors. i have fought this surgery for years..but at this point i cannot go on years doing what i'm doing now. and honestly i'm just so excited to do what it takes to be heatlhy again :) will this be the worst thing i've ever done? i don't know..sometimes i just wish i did..but i keep praying and i know that God will be with me through this whole thing.
Posted 1/14/2010 7:03 PM (GMT 0)
His judy, Rosemary, and everyone..

I am in a better frameofmind today. (1 yr later) The food restrictions are known to cause a flap on the scar tissue/??? and cause blockage.. so I avooid them. I am going in on the 22nd feb for 1yrfollow up I only have to drink mag citrate, for colonoscpy? on spelling... since I have small colon left.

Lol when I proof the above...what drugs am I on???

Going out socialy is not on my list of fun, but I can have regular BM's sooo it is worth it.smilewinkgrin permanente.net/homepage/kaiser/pdf/36167.pdf

his the best handbook, my son found it for me. This will tell you EVERYTHING including what to expect, what will happen, diet. everything.  Check it out, even if you have been thru it. you will find helpfulturn

This is the answer, Carol

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