TOTAL COLECTOMY PART 20

Lizzie,

The "relief" has not come yet!! I don't know how long a doctor expects a person to go on like this.  The go-lytley didn't work i guess, so i took matters into my own hands and took two ex-lax tablets last night, got up this morning feeling like things were going to happen for me but.........no, just water.  My left side is beginning to hurt again like it did the day i went to ER.  I am hanging on for now because it is bearable at this point.  I am eating baby food today and drinking sprite.  I guess tonight i will get back on the nightly Miralax dose??? Not sure at this point....my nerves are just shot!!!!! It just feels like "everything " is sitting up below my breastbone.......guess i literally am full of it!! My daughter is an LPN and she is beginning to wander if i have a stenosis....Well, I suppose it i did have one they would catch it on one of the tests i am sure will be ordered for me in the near future?? i just really dread this journey...

Positive thoughts go out to all of you...........I honestly don't know how you all have coped with this conditon??? Tabitha

hey everybody,

Amanda - i do know about everything you've been through, i just thought that you'd be pain free by now... i guess that was silly of me to think so.
anyway, i hope you see this before you go into that bathroom and don't come out for a looooong time.... i wanted to wish you good luck with your prep. and i'll be saying a prayer for you for the surgery to be as smooth and successful as possible and speedy recovery.
a big hug coming your way....

Lizzie - every time i see you post, i'm anxious to see wether the insurance has approved the botox already...... but still not yet. those darn insurance companies.... this waiting must be driving you crazy. please hang in there and take care of yourself. i'm always thinking of you.

as for me, it's morning here now and i've been having an enormous pain ever since last night and for a couple of hours this morning. it was all a great amount of gas that was stuck from my stomach to the rectum and won't move, i couldn't stand straight and it was pressing real bad on my chest. abdominal massages didn't help, it was awful. i drank two glasses of warm water an hour ago and forced myself to eat something and gradually the gas started to move and eventually i went to the bathroom and it finally bursted out with some diarrhea with it - some left overs from the laxative i took on friday night. it's nothing new, actually - just the regular situation with me, but this time it was a lot stronger.
well, i don't know, but yesterday i chewed gum for an hour or so - something i haven't been doing in a VERY long time.... i'm starting to think that maybe that was what caused it to be worse this time, so i guess no gum for me anymore.
do you guys know whether chewing gum causes more gas?

Tabitha - you poor thing, my heart goes out to you. my bloating attacks never last as long as yours. it really sounds unbearable - it has been more than a week now since all of this started, hasn't it? and you haven't had relief yet. i really hope you'll get through it soon.... looking forward to hear something encouraging from you.

Heather - i'm so glad you joined us and please keep posting and updading us with your progress. i wish you the best of luck!!!!

oh, thanks Karen - NEVER AGAIN!!!

hey amanda,
I just want to say good luck tommorrow. i am pulling for you. Don't worry, they will not cancel the surgery for a sore throat. I know your nervous, but think of it as freedom from the bag. It is your well deserved Christmas present for yourself. Also think of all you have went through in your life. This, hopefully will be the last step to a full recovery, where there is not more worrying about constipation or any other bloated feeling. You will probably lose more weight, so hopefully, by christmas you will at least be eating some foods that are related to holiday, so you can pig out. If not, definately by New Years. With my surgery and my intolerances, I can have seafood, so I know I will be pigging out on Shrimp for New Years Eve. Drinking though, is a no, no, but that shrimp is sounding good so now, I wish I had it now, lol. Well anyway, Good luck with your surgery, and I hope you have a speedy recovery, so you can enjoy the Holidays. Happy Holiday and a Happy new year, if we don't see you. Hopefully we will be hearing from you way before that, maybe before Christmas. Good luck and we look forward to hearing from you.

Amanda,

  I will be thinking about you this week.  Take care of yourself and let others take care of you. Prior to Gastric Paraysis (sp)that led to Colonic Inertia I was very ill for about 4 and 1/2 years.   In and out of different hospitals.  Much better now but I learned (the hard way!!) that I need to let others help me.  As women, we tend to be more nurturing and expect ourselves to do as we always have!  DONT fall into that trap!!  Take your time and let others be there for you and ask for help.  God bless you above, below, from left and right!

Heather

 well, I finally had my "moment" Thank goodness.

after all that stuff that made me drink it took until sunday to get any relief..

Am feeling great today, although now I am apprehensive to eat much because I am afraid of a repeat performance!!

Hope each of you have a great day.

Tabitha

Hey guys...

Found out today insurance denied my appeal. They said it is too experimental. I have no other choice than to pay out of pocket. I get my first injections on this Wednesday afternoon. Perfect timing being Christmas and all.....but we can make payment installments.

I had some rectal bleeding tonight.....it stopped, but I am not sure where that came from.

Hope you all are well....CONGRATS Tabitha:) Hope you continue to feel well.

Lizzie

Heather, Karen, Janie and everyone else who is about to have the surgery,

i don't know if you all know about this already, cause if you don't, i've found out there are two types of materials that are used with abdominal surgeries in order to prevent scar tissue/adhesions called: "sepra film" and "adept".

please do some research about these materials and read about it youselves and i strongly advise you to ask your surgoens about it.

unfortunately, surgoens don't tell us about it and only if YOU order it, then they will use it. it's very important to ask for it to be used at the end of the surgery.

anyway, you will have to pay for it out of pocket and it's rather expensive, BUT it sure is worth it!!!!!

i hope it's not a short notice now. 

please update us on what your surgoens say.

well, i know you're all probably very busy with all the christmas preparations and stuff, but i need to ask you guys something...

it's about the colonic trasit time test - did you all eat regulary (same number of meals and same amount of food) during the week of the test, or did you eat less than usual? cause i feel i HAVE to eat A LOT less than usual in order to hold on the whole week..... i mean, i find it absolutely IMPOSSIBLE to eat regulary w/o having a bm for a whole week - the pain after 2-3 days is impossible to bear!!!!
so how much and what did you eat during that week?

any response would be appreciated.

Lizzie..... i'm keeping my fingers crosed for you, and i've also said a very special prayer for you today - thinking of you honey, and really really.... really really really hoping it goes well.

i wonder how Amanda is doing.

Hi Hodaya,
I had the colonic transit test before my colectomy, and you can eat as usual. It actually helps if you do eat and whatever you normally do, so that way it would be alot easier to determine what goes on. when I had that test done, I ate and even took all of my medications that I usually take during those days, and That is how they found out my colon died. Well, I hope this help out a bit.

Psygirl6

thanks, psygirl, for your response.

but wasn't it too painful for you to eat regulary although not having a bm for a whole week?? i have to have a bm every day, cause if i don't go at least a little bit every day, the pain is unbearable and i can't function at work.

well, strugling to have a bm every day is taking me 5-6 hours every morning. it used to help before, but for the last 2 yrs even when i make the effort, the bms are getting smaller and smaller and i'm still having a lot of pain during the day, which increases as the evening comes, so i can't eat much.

i just don't know how i'm going to manage this test. i'm scared i won't be able to survive the whole week.

Lizzie..... i'm excited for you, i hope the botox help you. i'm wondering though what else does the surgoen at the University of Michigan can have to offer besides the botox. i was under the impression that there's nothing besides the botox, but i guess that maybe there are more options to deal with this prob. i'll be soooooo happy to hear that something help you and you WON'T have to have a stoma. i just keep parying.

about using the laxative, i say you should take it regulary, and only when you see that you're starting to have to much diarrhea, so than you can cut on the amount gradually. anyway, just my thought.

so does anyone else can tell me their experience with the marker test as to how much they ate during that week..?

Hodaya-

Yes, He did say and with all the research I have done that botox would be the last thing before the ileostomy, but he wants to make sure before I make that decision that I see another physician who can put in his thoughts.

On your sitz marker question. I tried to eat normally, but I could not. I was in so much pain and even called the on-call Doc to see if I Could have my xray earlier!!!!!!! I wish you the best on everything and hope that this works for you? What is your doctor planning so far? if the marker test shows you have CI?

Amanda.....hope you are doing well!!!!