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Total Colectomy Part 5

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Posted 8/18/2005 11:57 PM (GMT 0)
We are locked out of the other site, we can not reply anymore. Should we start over here? confused

Kelly

Post Edited By Moderator (Cleo) : 8/20/2005 6:27:30 PM (GMT-6)

Posted 8/19/2005 12:21 PM (GMT 0)

Sounds good to me Kelly! 

Amira, hope everything comes out ok, ha, no pun intended!  My surgeon told me the same thing about those strange pains/twinges on my rt side.  They will go away!  Glad everything continues to go well for you.  You will be tired for awhile, you are still recovering, it took me a good month before I felt back to "normal", even though I went back to work 2 weeks after I came home from the hospital. 

Posted 8/19/2005 1:49 PM (GMT 0)
Hi Somer,

 

Everything did come out OK -- what a pleasant surprise that was!  Yesterday was a big sleeping day for me.  I woke up at 10:15, left the house at 11:30 and came home at 1:00 then back to sleep until 3:30, at which time I left again coming home at 5:00 and sleeping until 10:00, had dinner and went back to sleep until this morning!  I must have needed it -- I guess.

 

Did I tell you guys that my doctor also doesn't want to see my again for another 6 weeks and said that I could travel out of the country if I wanted to?  He just said to make sure that I take his surgical notes on me wherever I go -- that that was always a good idea.  Unfortunately I have no travel plans in the near near future.

 

I'm planning to go back to school Sept. 12.  I figure I'll be able to carry a 5 pound book by then!  I'm a psychologist who is going after an MBA -- don't ask why!

 

Anyway, have a great day ladies.  I'm off to write my thank you notes then get ready for dinner this evening with friends.

 

Be well,

Amira

Posted 8/19/2005 9:01 PM (GMT 0)
Ladies, I didnt see this one, so I posted a "total colectomy 5" because then we can keep telling ppl to read the posts 1-5 hehe!

Amira - please make sure you are getting enough fluids in.  No less than 64oz every single day.

Somer and Zoe - either of you had coffee or cappucino.  I am a cappucino addict, feel like I cant start my workday without it... but havent tried it since surgery!

Sara - where you been?  How are you doing?

Hugs,

Emma

 

Posted 8/19/2005 9:24 PM (GMT 0)

Sorry, I did not know the process.  Last night I started freaking out thinking I would not be in contact with any of you anymore. sad

I am backed up again.  I ate grilled chicken breast last night.  I took big bites and did not chew them very well.  I knew when I was done there was going to be trouble.  I took 3 stool softenters when I got home at 4 pm today and drank a glass of sunny D.  I am trying everything.  I feel like crap (ha ha). When I draw my knees up I can feel the fullness down below.

Emma - I have been drinking coffee for quite awhile with no troubles at all.

Questions -1.  Does anyone check their stool to see what is coming out and try to figure how long it is taking to pass?.  Like for me, yesterday I ate a tomato at 12, it started coming out at 5:30 pm.  2.  Also, do you think that food can get stuck in the small intestine. Does food push food out or does it step over other food that has already been there?  Example did the tomatoes step over the mashed potatos in order to come out first?  I always look at the stuff I pass.

Stupid questions, but I think about them.

Kelly

Posted 8/19/2005 10:29 PM (GMT 0)

Kelly - poor girl... you know better than to not chew your food.  Keep drinking lots and lots of fluid and if you are not nauseous try to eat something that you know passes well.  But most importantly, keep drinking and walking!  Ooh, try something warm... warm up some V8 or apple cider.  Warm fluids cause the bowels to dilate which usually clears you out!  In answer to your questions..

1.  I will admit to looking (and I bet Somer does too).  On Tues I was getting freaked out because I had white liquid when I wiped (and I dont drink milk) but then I realized that I had ice cream!  I dont analyze it for hours, LOL but I have a quick look-see also to make sure that I had a substantial BM because it can be hard to tell sometimes with my butt end, its not used to pooping!

2.  Food usually doesnt get stuck, and when it does its NOT good.  Typically if it gets stuck you will have an obstuction which will be followed by nausea, vomitting, and tummy swelling!  It is possible to try to push food through, because eating stimulates your intestines to move (although I dont know how it works without your large intestine).

Just went through FOUR storage containers of clothes, and got rid of everything!  Some goodwill, some garbage, and some for my skinny skinny friend!

Anyone have any advice for good food to put in my fridge at work!  I am buying my own fridge for the office, which I think is just the coolest... but typically I would put fruits and veggies... but I am thinking that eating TONS of those foods wouldnt be a good thing yet.

One more question: I am dying for potato skins from Applebbees... anyone try this or something like it?  Technically I am not diet restricted, so there isnt a reason why... but I am scared!  hehe they scared me silly :)

Hugs,

Emma

Posted 8/19/2005 11:42 PM (GMT 0)
Emma, the first thing I wanted when I could eat in the hospital was a cup of coffee. When they brought it I nearly gagged and couldn't drink it for about a month.  I got over that and drink my daily cappucino every morning on my way to work.  I couldn't make it without it.

I worked a whole week this week.  I'm tired, but happy.  I still have a lot of trouble sitting for long periods of time.  I try to get up and move around and take a long walk at lunch, but by 3:30 my butt and sides really hurt.  Yesterday I was almost in tears.  I get home and take a short nap and then I'm okay for the evening.

I'm still eating low residue foods.  I ate a peach yesterday and was in a lot of pain.  But one thing I did learn is you have to chew your food.  I was always a gulper and now I have to make myself eat slowly and chew throughly.  I also notice that I don't go as much if I don't drink a lot.  I keep a bottle of water in my car and one at work all the time.  I was never a water drinker, but guess I'm going to have to become one.

I keep yogurt, applesauce, protein bars, v8 juice, smoothies - stuff like that in the refrigerator at work.  Potato skins from Applebees - oh God, that sounds good.  Maybe if we just chew them up really good.

Cheers,

Zoe

Posted 8/19/2005 11:52 PM (GMT 0)

Emma -  that is cool, your own fridge.  Maybe you could put some yogurt, cottage cheese or pudding in there.  What about popsicles.  Or, I found these really good low fat ice cream sandwiches call "skinny cow".  Bake some chicken. 

Try some tater skins.  I know what you mean about being scared.  I still have not tried lettuce or vegtables yet.  And I need to stop eating cookies and lucky charms and 10 graham crackers at once and also stop eating brownies. I need a drug to turn off my the "grazing" chemical in my brain or all my clothes that now fit again (they stopped fitting in 2003, but I have been wearing them anyway) will be too tight soon and I hate the thought of that.  I hate the thought of my inner thighs rubbing together again. sad confused

Amira -So glad to hear your doing good.  I too needed all those naps.  Especially in the first couple weeks when I could not sleep at night because of that cyst.  Take all the naps you need and enjoy the rest.  You will need that stored energy.  Not seeing your doctor for 6 weeks, sounds like things are just great for you.  You were so worried, just like the rest of us were before we did it.

Kelly

Posted 8/20/2005 12:10 AM (GMT 0)

Funny, we are all such worriers, but in reality we are also completely normal.  Sometimes when I just sit and think about the finality of this surgery, I get freaked out!  I mean yes its over, done with, and I am happy with the results but really think about it... Anyways...

Kelly - you sound like me with the grazing button!  LOL, on the soft diet list was chocolate chip cookies if they were soft.  BF discovered "soft" chips ahoy cookies and I have been grazing them for the last 2 weeks... grr... I am going to have to shut that off!

Zoe - thanks for the advice!  I look to you alot because you had your surgery close to the time that I did ... when was it again?  I used to be a big water drinker and one of the things that killed my diet when I went back to school was no time.. cant really drink in class because of the bathroom issue.  I had a summer class last summer, and I had a teacher that asked if I was a diabetic because I was in the bathroom every hour.  How embarrasing!

Hugs,

Emma

Posted 8/20/2005 4:17 PM (GMT 0)
Hello All,

 

Emma, how do you know I'm not drinking my 64oz per day?  I'm trying to do the little sip thing though.  And as far as chewing goes, I don't know what you guys mean -- I rarely ever chew -- my husband watches me eat in total amazement.  He's a little guy and maybe eats once a day if he even remembers to do that.  Plus that one meal is often just one hotdog!  When I got home from the hospital that first day and weighed 124 pounds because of all the IV fluid, he said, "Ha, I only weight 25 pounds more than you!"  Can you tell he doesn't value his life much?  Anyway, I don't chew, I inhale.  And, Kelly, my BMs are sometimes semi-hard and sometimes soft, period.  There is no indication of any kind as to what exactly of what I ate is coming out -- other than the smell.  I can tell what's coming out because the odor remininsce of what I ate is still there on the way out.  Face it girls, we're just really gross now!  And to think I use my real name on these posts.

 

I can tell you that what really bothers me is sitting at this computer.  The pain associated with the sitting position is intolerable.  How long will this last?

 

I wanted to write a lot more, but I need to lay down -- until next time......

Love, Amira

Posted 8/20/2005 4:23 PM (GMT 0)
Amira - I have a laptop so maybe my experience was different, but when I was first out of the hospital I had to put the laptop on a towel and I would put these stabbing crampy pains under my left shoulder.  I still get them sometimes if I am on it too long but for the most part it is gone.  Now, the nurse is me has to say... your BMS should not be semi hard at all especially not this soon post op.  You should not be straining at all, because straining can split your anastamosis site.  Maybe you should chew a little bit more :)  Also you HAVE to drink... try koolaid if you like it... because that is what finally worked for me!

Take care dear,

Emma

 

Posted 8/20/2005 4:30 PM (GMT 0)
Amira, I hate to tell you this, but I'm two months out and it still hurts to sit.  I still get this pain in my side.  The left side isn't as bad any more because I'm getting those trigger point shots, but the right side is a killer.  I sit at work most of the day and sometimes I just kneel on a pillow at my desk.  It looks stupid, but I'm a little wierd and nowone really looks trice LOL.  I also try to get up and walk around as much as I can.  I ordered one of those kneeling chairs but I haven't received it yet.  It must be coming by mule train.

Just hang in there and chew your food.  We have to stop gulping.

Cheers,

Zoe

Posted 8/20/2005 4:33 PM (GMT 0)

Stupid me thought that hard was a good thing!  I was amazed that they were formed already.  I was even showing off by telling my husband, "Hey, I thought I'd have to wait a year to have formed BMs, I'm healing great!"  But, I haven't really had to strain, maybe just a very little -- still, thinking of spitting my anastamosis site is scary!  about the water, are popsicles OK?  I've been having a lot of those to compensate.  Thank you Emma!

Amira

Posted 8/20/2005 4:38 PM (GMT 0)
Hi Zoe,

 

Well, you and Emma are just fountains of good news eyes I just signed up for a Sept. 12 on-line class -- Hey, maybe now I can get that lap top I wanted for my birthday last year that I never got -- always thinking -- that's me devil

 

Okay, now I really have to lay down.  Thanks ladies!

Love, Amira

Posted 8/20/2005 4:44 PM (GMT 0)

Amira dear - well its not a horrible thing, but I just wanna make sure that you are not straining.  I will say that since I started eating a little bit more food my BMS have been a little bit more solider than they had been previously... yes popsicles count for water... but seriously you have to get 64oz of water... and if you are eating food you should be getting at least 12oz water with every meal to ensure you wont get obstructed.  Lastly, you should be chewing... chewing... chewing... I am trying to be more conscious of this now... but I still am working on it.

Question: anyone have canteloupe or pineapple?  How did it react with your system?

Hugs,

Emma

Posted 8/20/2005 4:46 PM (GMT 0)

PS - you should get a laptop!  They are SOOOO worth the price.  When I bought one a few years ago, I didnt think it was that big of a deal, but I was wrong it was worth it!  I have not used a desk top since I bought the laptop...I can grade papers, and write papers and still sit in the comfy chair and watch tv while I am doing it! :)

And for 50 bucks you can get a wireless network card and then you can be on the internet without any wires... also totally worth it :)

Posted 8/20/2005 5:17 PM (GMT 0)
Emma, I tried cantalope and it's just fine.  I don't like pineapple, so can't help you there.

I had this great idea.  My email is [email protected].  I was thinking if people want to email me their e-mails and maybe addresses and phone numbers I could type up a contact sheet and we could keep in touch that way too.  I would e-mail everyone the information.  You could give out as little or as much as you wanted to. It would be a good way to organize that convention that would be so neat and maybe we could talk to one another too.  I know that if you have a cell phone and have Verizon as a carrier you get free mobile to mobile depending on your contract.  I'd hate to see us fall out of touch.  I know we have never met, but I feel like I have so many good friends on this forum.  We are so much help to one another.

Cheers,

Zoe

Posted 8/20/2005 6:24 PM (GMT 0)
ALL - I still have a pain as well.  In my right side and in the bottom area.  I sit down and get in gingerly.  Usually, I have pain around the middle as well, but it works itself out. I feel the same way when getting out of bed.  My subconscience won't let me roll around too much and I stay in one position. When I have a massive rush of gas expell it feels like my intestine food system is coming out.  It is like it shudders inside. I want to ride my bike, but I think it will hurt.  Gonna give it try later, just up the road a little.

I am still backed up, the apple I ate yesterday at noon has not passed.  I feel incredibly bloated.  I am drinking water, bought some V8 for tonight.  I think I will take another stool softener.  I WILL NOT EAT FAST AGAIN and I PROMISE TO CHEW, CHEW, CHEW.  I too, shovel my food with out even a breath sometimes.  Has anyone had trouble with pork? Some say it so close to human flesh that it takes longer to digest.  I ate it a few weeks ago and was in misery for 4 days.

Amira - Like you, my husand rarely eats.  I could eat him under the table 5 times over. He is 6' 1" and 155# with change in his pockets.  All he eats are Oreos. 

I know we share gross info, but who the heck cares.  I don't.  It is part of us now.  I for one apprecitate everyone's input and experience.  It helps me to realize that things are going good or bad.

Zoe - Your contact sheet would be great !!!!!!!!! I nominate you to organize the convention ;).  My e-mail is [email protected] or [email protected].  I would be like to be there for someone and vice versa.  No matter what time of day or night, with in reason of course.  Like I said I am 40(wish it were 30)and live in extreme SE Iowa, 70 miles south of Iowa City.  I don't have Verizon, but a local cell phone provider and a good plan. 

I work in a shipping/recieving office on a 12 hour shift.  I run the dock and do all the incoming/outgoing paperwork plus anything else that gets thrown my way.  Right now it is slow, but come October - next June it will get crazy.  I am starting to worry about stress and not being able to go when I need to because I could stand at the window for 2 hours straight.  I am trying to relax so things can move and flow easier.  Sometimes I need to sit on the toilet for 5-10 minutes in order for things to come out. My boss is a poster child for Ritalin.  I work for a great company, but have considered looking for a lesser paying, quiter job.

Kelly

 

Posted 8/20/2005 7:43 PM (GMT 0)

Kelly - thanks for the pork visual, lol I dont think I will eat any of that for a while.  Pork was the only meat that I could not have while I was on the soft diet, so it must be harder to digest.  Remember to chew your food, I make it a point to make sure that things are mostly liquid before I swallow and so far nothing had bothered me!  Try eating something (maybe tomatoey) and that will help.  As long as you are not throwing up it is a good sign.... and just be patient :)  about the job, your employer has to provide bathroom breaks and if you are concerned about it you can talk to him/her.  I am sure if you are a good employee and you tell your boss that you are thinking of quitting because of something as simple as bathroom breaks they will do something to accomodate you!

Zoe - my email address is [email protected] and I think the idea of a convention would be a great thing!  I would be there, as long as it didnt interfere with school!  I have a cell phone, but I am not big on phone calls because I have like NO time.  Its funny, I always tell the students that they can get me faster online and they dont believe me... but its true!  I check my email alot more... and email is nice because you can do it in your own time!  I live in Wisconsin, very close to green bay which is kinda in the middle of the US ... hehe maybe a good idea for a convention! :)

For lunch I ate some beef stroganoff (chewed the pieces crazy long) some veggies (including green beans and corn) and some apple cobbler (chewed the apples REAL well) and although I didnt eat a large amount, I expected to not feel good... but I feel FINE!  This discovery makes me HAPPY!

Hugs,

Emma

Posted 8/20/2005 9:49 PM (GMT 0)
Hi, everybody!
As I was reading all this, I couldn't help but laugh out loud because, yes, I take a BIG look at what I poop out, too.
I still don't have any formed stuff yet, just pieces and its been
3 months. Does that mean that I'm drinking too much liquid?
I've always been a slow eater so maybe that helps, but today,
for the first time, I feel kinda bloated and don't know why because I've already gone to the bathroom at least 5 times.
I went back to work yesterday for the first time and didn't eat
much and it was on the run, so maybe that's why. Sometimes
I get a little depressed because I feel like this whole thing is running my life sometimes, but I know that it was still worth having done. I've not had a discomfort sitting down, so I'm glad of that and I had a rectocele repaired at that time, too. I still have the nagging pain by my right hip bone, though. I'm sooo glad to read all of your accounts because they make me
feel a little more 'normal'--- especially when we're 'examining
our BM's lol. that is sooo funny! I just hope nobody catches me if I'm in a public bathroom!
My e-mail is [email protected] and my real name is Linda.
Annie is my dog's name (she's my baby!)
Posted 8/21/2005 4:34 PM (GMT 0)
Hello - I think I OD'd on stool softener. I have not had a BM yet today even after I ate about 3 tomatos last night.  I remember one of the former quacks I went to telling me that too much softener will turn to mud.  Maybe that is what I did.

Linda - I wish I could drink too much water.  It is sooooooooo hard to get down.  I would say keep drinking it.  Lucky for you, you do eat slow.  Both of those are in your benefit.  Don't get depressed !!!!  Being is depressed is for those who are still living the way we used to.  Things are going to be great in years to come.  The best thing is we are all going thru it at about the same timing. Would you mind telling us your age and your location. 

Emma - Beef stroganoff and apple cobbler sound soo good that I could over indulge.  I'd really like some lasagne and garlic bread.

Kelly

Posted 8/21/2005 6:21 PM (GMT 0)
Kelly - try some hot liquids... apple cider or hot chocolate.  Since you think that you might have OD'd on the softeners, try some thickeners.  Peanut butter, noodles, and bread are all thickeners.  Do you feel ok otherwise?  Nauseous?  Bloated?  My prayers are with you !

Posted 8/21/2005 6:57 PM (GMT 0)

Soon after I posted the previous message.  I had some relief, but not much.  It was very hard and formed.  I had a glycerin suppository in for over an hour.  I had been drinking coffee all morning Emma, wonder if that is what kicked it in gear.  I am sooo bad at not keeping a food diary and keeping track of what food does what.  Maybe I better start.  I was not nauseous, but I have been retaining fluid.  I need to make it looser some how, that is why I took the softeners.  I will eat an apple later, maybe that will help.

Kelly

Posted 8/21/2005 9:35 PM (GMT 0)
Wow, you have no idea how happy I am to have found this forum.  The stories I have read by each and every one of you has inspired me greatly!   It's nice to know my sitaution isn't the only one in existance.  Even though I have a wonderful and supportive family, friends, and husband it's nice to hear advice from people in a similiar situation.

I am 25 years old and have recently been diagnosed with colonic enertia. My GI recommends me to have a total colectomy where they will remove my entire colon and connect my small intestine to my anus. I haven't fully decided to follow through with the surgery, but I do know I can not live life as I do today. I currently have to take an obseen amount of laxatives to pass anything through.  Every one of you have given me great insight on life pre and post surgery.

Can anyone help with some questions I have?
What was the worst part of surgery?  I hear you talk about a tube, which really scares me.  What exactly is it?
What does your diet consist of?
Did you gain/lose weight? Do you have trouble keeping weight on or off?
How long was your recovery?
I look forward to hearing from you. 

Thanks for giving me hope!:)
Shelbs

Posted 8/22/2005 12:54 AM (GMT 0)

Shelbs, glad you found this site.  I found it after my surgery.  Lucky for you, you found it before.  All of us that will reply to your questions will have different answers. We are in different stages of post surgey. We have all had the surgery fairly recently. I think we are were all on or about the same course in post surgery. Some have recovered great with minor problems and others still have aways to go.  I encourage you to read "Total Colectomy Part 4.  During Part 4 is when most of us had our surgeries. There is a lot of broken down information about each of us and a lot of good advice.

I will give my answers to your questions.

Worst part of surgery - The unknown afterwards. what to eat, how will I feel, what will it be like.  Right after surgery is not what you base the rest of your life on.  It will take a couple months or more to get in a new routine. Your lucky, you have us to help you here with your post surgery questions !!!

Tube - I did not have an NG tube, but one us did, can't recall who. 

Diet - Some were on a low residue diet.  I ate ice chips for 2 days and then started on cream of wheat.  Also, mashed potatos, jello, pudding.  Now, I am eating spaghetti, hambugers, grilled chicken.  You will just have to try and see.

Weight - I lost 15# in 10 days. but I had other troubles.  I have gained about 7 back.  But, I gain weight easy, very easy.  So, I am trying to keep it off. I am 5' 7", 145#

Recovery - I am still recovering.  As you have read we are getting along great, but we each have our little problems that just have not caught up.  But, we are going thru it together.

Good luck with your decision !!

Kelly

ps May I ask where you live?

 

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