Total Colectomy Part 5

Kelly,

What is a flex sig?  Doesn't sound good at all!  I would like to know what all these years of laxatives has done to my small intestines...or do I?  Since you are thinking about taking a biofeedback test does that mean you are considering a total colectomy? 

Emma,

I did pass the defectography, but the biofeedback test I failed only one out of the three tests.  And I do agree, the defectography was a bit on the embarassing side, but at this point my shyness is out the door.  I'm glad to hear you say you think my doctor is a smart one...lets hope so!

Cathy,

Welcome!  I am a new member as well and this forum has been my saving grace, which I thank every one of you for welcoming everyone with open arms.  What is a hepatic flexure blockage and how do you know if you have it?  It sounds like your appt was full of good, knowledgeable information for you.  I wish I could give you suggestions on controlling your vomitting....I need suggestions myself.  The only time I do vomit is when I take a large amount of laxatives.  Did anyone have this problem too?

AnnieC,

Sounds like you are doing well.  8 BM's a day sounds like heaven to me right now.  Thanks for your story and I will follow up with an email.

I talked to my PT today about the biofeedback that I had here in Arkansas and she said I passed every test and I have good muscle control!  YEAH!  I swear, I have so many doctors I don't know what to do with....and my bills show it!  Anyway, I am feeling more convinced every day the surgery is the right thing for me.  Well, I will write and talk to y'all soon.  

PS...Spell check would be a blessing for this girl!!

I have another gross question.  We all say how many times we go each day, but how much is coming out?  Does anyone measure?.  I have one of those toilet hats and I try to catch some and see how it is in.  It is hard to get a quantity when it is in the toilet, watered down. I also observe the consistancy and what is in there.  The reason why I ask is because I think my BM's are slowing down and the quantity is less each time.  Yes, this is another good question for the surgeon on Monday.

Emma - I know I had the defectography, can't remember what the results were.  I know my surgeon saw all of that information.  But, it is hard for me to push out stool most times.  I had a moving xray in sept. 2003.  They put barium up my butt, made me sit on a commode and then push like I was going.  When the colon contracted down, my rectum went shut and the intestine swelled up like a ballon.  I think that happened with in the 12" of large that was left.  I am going back to the research Doc in Iowa City in November for information on biofeedback.  Maybe he will repeat that test to see if there is any change.  To be quite honest, if I had to go back in the have the 12" removed, I would.  Yes, again this a question that I have on my list for Mondays visit.     SEX, I did not ask my doctor either.  But, honestly I am not into my husband that much so it does not bother to have it or not(need another message board for this one).  I do it to keep peace in the house.  Surgery done on 6-27, sex on Aug. 1.  It was done in a way so there was no pressure below.  I will let you figure that out on your own. I have "put out" 4 times since then.         Flex sig was done while I was awake because I was there and I had had a good emptying that day.  It is weird to see your inerds like that.      Did you understand my italian?

Shelbs - A flex sig is where they put a lighted scope in your butt and move it all the way around to your right side down to look at where it connnects to your small intestine.  It is probably a little bigger than a "el-marko" black marker.  The tube is not very flexible, so the name is misleading.

I will check back later.  Kelly

ps spell check and grammar check would help !!!

Hi ya'll

Shelbs- a flex sig is a flexible sigmoidoscope that they do without putting you to sleep because supposedly they're not going up very far.  The hepatic flexure is by the liver, you know the "up, over, down and out" of the intestines?  It's at the top of the "up" on the right side.  It was VERY painful.

TO everyone-

So, I got my referral, after pretty much writing it for them.  Do they usually start the tests all over again?  I have a real hard time keeping the colyte down, and enemas don't work well.  I have a blockage that we could see during the "flex sig" at the top of the ascending colon (the top of the "up"). 

Gotta run

Cathy

OK, sorry I've been away so long -- I missed you all -- but not enough to sit at this computer when it's so uncomfortable just after 15 minutes.  But I'm happy, actually thrilled, to say that at 3 weeks and 1 day post-op I feel great!  I eat anything and everything -- I go back and forth between 109 and 111 pounds -- yeepee, and my sharp pain on my right side is gone!  I only have trouble sitting for long periods of time and my incision sometimes hurts near the bellybutton area, but not enough to warrent meds!

OK, enough about me.  What do you think of me?  Just kidding -- that's a Bett Midler line from some old movie.

I think this goes to Shelby and Cathy -- I failed my defocography 3 years ago and ended up getting a sigmoid resection or reduction (don't remember the proper name).  Anyway, it did nothing for my constipation, but fixed the sigmoid prolapse, which was the cause of me failing the exam.  I then passed the defocography test.  3 weeks ago, I had a subtotal colectomy where they removed my entire large intestine (are you reading this Kelly) and attached my small intestine directly to my rectum.  A total coloctomy is where they also remove the rectum -- that's the difference as far as I know.  What I'm trying to say is that you can fix the sigmoid prolapse and have a subtotal instead of a total colectomy in the same surgery.  Please ask your surgeons about this.  I believe more problems are associated with total colectomies than subtotal ones.

Kelly, people cannot live without their small intestines.  I'm certainly not a doctor, but I've done tons of reading of journal articles and believe your problem to be those 12 extra inches.  I think I told you this before in an e-mail.  Talk to your surgeon!

Zoe, my e-mail address is [email protected]  I have no idea why this printing went to red, but I can't get it back to blue -- whatever -- Zoe, I'll e-mail all my info and I do have Verizon!  For the rest of you that don't know me, I'm 42 and live in the West Bloomfield/Orchard Lake area in MI.  I would love to meet whether in Vegas, Chicago or anywhere.

Emma, I miss you so much!  I'm still working on the laptop and need to ask you about that $50.00 wireless card you were talking about.  Currently I have a cable connection -- is that relevant to the wireless card? 

about your interchange with your patient -- as a psychologist, I have to warn you about the chance you are taking in sharing personal info.  I know how tempting it is and how all you want to do is help your patients.  But please for your own protection be careful.  If you tell them about your experience, for example, and they count on the same results and don't get them, they may blame you for misleading them or report you or whatever -- stuff you just don't need in your life.  They may be grateful at the moment, but if things don't go their way, you may just be their scapegoat -- please be careful!

Speaking of which, I totally nailed the hospital when I received the survey like you suggested.  It felt great and I even gave them my name and number and I'm hoping they will call.  Actually, I'll be pretty annoyed if they don't!

about the 12oz of water with food that you mentioned pages ago, I was told not to drink for at least 10 to 15 minutes before or after a meal.  I heard this at a spa -- the reasoning was that the liquid washes the enzymes needed for digestion and results in weight gain and who needs that!

Sorry to hear about the chicken fries and potatoe skins -- I feel the same about soda -- it just doesn't taste the same. 

And congrats on the no more doctors -- what a great feeling that must be!

To all, the only food I had problems with (problems meaning feeling like I had to go but couldn't for almost a day) was Chinese food, specifically Magolian beff.  Anyway, I got things moving by having a ceaser salad followed by a berry dessert which caused a little painless gas followed by a nice BM.  So fiber is good at times like these.

To the newcomers -- about my surgery -- I was in from Wed. to Wed. and wasn't allowed to eat until I either passed gas or had a BM.  By Mon. when I had neither, I became very anxioux, which I'm sure didn't help matters.  Anyway, I passed gas later that Mon. and by midnight that night had a BM.  The next day I had my first anything in my mouth, which happened to be mashed potatoes.  That would have probably been fine if they haddened put gravy on it, which caused the most horrific gas pain ever -- since then I haven't had gravy or any gas pain to speek of.  I ate very little residue diet food for about 3 days (2 tablespoons per meal).  After that, I got my old appetite back and look out -- if I saw it, I ate it -- still residue until the following Tues. (almost 2 weeks after surgery) when I saw my doc.  He said eat anything and I did.  And again, I'm doing great!  I just haven't tried corn yet -- but Emma, if you can do it, so can I!  I also love beef stroganoff but haven't had a chance to get to it yet -- but did the lasagne and garlic bread -- yummy.

about chewing gum -- I may be wrong, but isn't that like drinking from a straw?  In other words, wouldn't that create gas?

To all, tape Oprah this Mon.  It's a repeat and I think you'll find it very interesting.  It's all about pooping and colons and what constipation does to your colon.  Which reminds me, my doctor told me that after removing my large colon, he found abosolutely nothing wrong with it other than it just didn't work -- he couldn't find the reason why.

Linda, I love that you use your puppy's name - AnnieC.  I see we are just a few hours away at most -- let me know if you ever need to meet and chat.

Lastly ladies, maybe we can make a generous contribution to this establishment if they provide a spellcheck?

Avery, Sara and Somer -- a big hello to you guys and thanks for your support!  Sara, I'm so glad you are off that Miralax!  Also, I used valuim for the right side pain and it worked great.

Kelly, stay away from softeners; I really thing you're ODing on them, and just revisit those 12 inches with your doc!

Missed chatting with you all (old and new) -- take care until next time,

Amira

I so miss you too!  And I'm thrilled to hear that I'm wrong about the water and meal deal.  That's about the only time I don't have to force myself to drink -- when I'm eating.  It comes so easily then, and thinking that I was doing something that enhanced weight gain really bothered me.

Don't freak (take the wrong way) my warning about disclosure -- I'm sure what you said to her was very helpful and warrented!  I'm more cautious in terms of the slippery slope concept: the more you disclose, the easier it becomes to do so.  But I'm sure/positive that you'll see a risk coming miles away!

Thanks for thinking I'm smart   Glad to have you fooled    Hey, Sunday is my 7 year wedding anniversary (my husband's was Aug 6 -- don't ask, just know that we never agree on anything and why should our wedding date be any different).  Anyway, he just told me he's getting me a Dell laptop!  I'm so excited.  I think he's ordering it today.  I asked for speed, a giant screen (I'm over 40 and my eyes are nowhere near what they used to be), and light weight.

Have a great vacation, and when you get back PLEASE tell me how your BMs reacted to flying.  I'm sure you all agree that travel made constipation issues so much worse.

I have a busy weekend planned with a birthday party at Morten's Steak House (I'm trying creamed spinach tonight), an all day wedding tomorrow, and people are taking us out to dinner Sunday for our anniversary, which I wish they weren't, but couldn't get out of.  And to top it all off -- we'll be having sex for the first time since the surgery if everything goes as planned!  Wish me luck, I'm a little scared!

Until next time,

Amira 

Amira - Glad I could dispell some myths.  There are so many bad ideas out there that people have propigated over the years and everyone just thinks that it is the gospel truth when it is not.  Another good one, many people told me that after surgery you could not eat and nor did you have to eat a high fiber diet... but they are wrong and my doctor encourages it. 

Good thing with the laptop!  I love mine... I almost never sit at a desktop anymore except when I am in my office at school.  At home I never touch the desktop.  about the wireless card, if you have DSL or Roadrunner you can get a wireless network card for like 50 bucks and it makes it so that you are always online.  For example, my computer, any time I turn it on... I always online when I am home because I am hooked into the network.  It is so nice because there are no cord running across the room!  So worth the money... now when I go to the campus I am not online because they dont have it in the nursing building, but if I go to the union I would be because they are a network.  While you are thinking of what you want... remember to get a full size keyboard and a scroll pad.  I dont have a mouse on this thing, I just have a scroll pad and it is worth it.  Also not having a full size keyboard will drive you nuts.  I had another laptop and although it was lighter and smaller I returned it because thekeyboard was smaller and I couldnt type as fast as I normally do (which is way fast) because I kept hitting the wrong keys!

Ok off to get some work done,

Emma

Emma, hope you have a good time! We all deserve a little fun!

Amira, I was nervous about the "first time" after surgery also, but everything was fine.    

My doctor also encourages high fiber diet.  He doesn't really say when you should drink fluids in regard to meals.  He says just along as you drink plenty of them, it shouldn't matter.  Certainly, keeping an eye on the amount/volume of vitamins and minerals you take in is very important, whether it be through diet and/or supplements. 

Cathy, the flex sig doesn't look at the whole colon.  At the medical office I work in as a nurse, my provider does flex sigs all of the time, with no sedation.  At most, it is uncomfortable (talking from experience here).  The quality of the prep beforehand sort of dictates how far the scope can go.  The colonoscopy does however look at the entire colon and usually is performed under conscious sedation (thank goodness!).  My surgeon told me that yes, even though we have lost our organ that does the abosorption, our small intestine will learn to take over.  My case was slightly different from others b/c I would have a BM every 2 weeks, if I was lucky.  Here's the difference,when I did have a BM, I had severe diarrhea for 1-2 days afterward along with severe cramps and bloating.  Then, the cycle would start all over again.  So in my case, my large intestine wasn't absorbing either, my kidneys actually started to filter more of the toxins, which caused me to having recurring UTI's. 

Post Edited (Somer) : 8/26/2005 12:59:53 PM (GMT-6)

WOW, I am blown away.  You all have just proved to me that I don't know anything about myself, my body and tests that I have had done over the past 15 years.  To be quite honest, I never in my life thought anything could be done and I never kept it in my head or on paper.  On March 31 of this year my life change.  I met Dr. Micheal Niehaus of Burlington, Iowa who told me there could possibly be a resolution to my dilema.  I sat there and cried.  He was the first one to give me hope.  I know I jumped into the surgery with my eyes wide open and with hardly no information.  I still have a lot to learn.

Amira - you told me before about the 12" left.  I will question my surgeon on Monday.  If in the future it needs to come out.  So be it.  I already know what to expect.  I really think the food is stalling out somewhere in the small intestine.  The transit is not good.  I had a really good BM this morning and feel better.  But, I need for this to happen all the time. Also, I spent my 15th wedding anniversary in the hospital, no fanfare, nothing.  So, enjoy !!!!!

I am sorry that I can not contribute intelligent information.  Hope know one holds that against me.  At times it is very hard to get on here everyday to keep up.  If anyone would like to e-mail me personally they can at [email protected].  Really, I am an intelligent person.

Kelly

Emma, I'm not sure what a FLYlady is either?!

Cathy, haven't really found anything out about the bruising.  Actually have noticed a few more today around my knees.  Not really sure about them, checked some labs on myself at work today, everything was normal, so I think i'm just going to press on and see how it goes.

The defecogram was definately the most embarrasing test I have ever encountered. There were only 2 hospitals near me that performed the test, and wouldn't you know, the one they scheduled me at was the one I worked for.  I quickly, but politely said, "not going to happen!".  Thankfully, the radiologist was about 100 years old, and looked nothing like Tom Cruise!  If he did, I would have probably went running home.

It's about 4:30AM and I'm sorry to say that the pain around my incision section, specifically the bellybutton area, woke me up Well, at least I'm not nauseated anymore

Somer, I still have bruises on my thighs from where they gave me blood clot prevention shots in the hospital every 12 hours (they originally wanted to give them to me in my stomach -- there are times when you just have to say, "NO!")  By the way, did I tell you guys that my general physician called me a few days after I got home telling me that according to his records I should be home by now and if I needed anything to please call -- Wasn't that nice?  Anyway, before my surgery and after I told him I was having it, he asked me to schedule an appointment in 3 months so that he could do a complete work up since the elimination of my large intestine would likely result in varying electrolyte, cholesterol, etc. levels.  I'm saying this because it may be related to the bruising.  I should also note that I received no phone calls from the hospital since the day I left; they were probably just thrilled to get rid of me!

Kelly and Emma, it wasn't until I cried to my surgeon that he gave me the subtotal colectomy option, not the other way around.  I think he didn't recommend it because he viewed it as a drastic measure as opposed to a God sent.  But now I just love him forever.  The whatever strips are falling off my incision (finally) and I'm beginning to see my scar.  All I have to say is that he did a great job! 

Zoe, I sent you an e-mail with my info.  Let me know if I missed anything, like my age (which is 42) or the fact that I have a beautiful 3 year old puppy (Coton de Tulear) that I love more than anything and that it's breaking my heart that I can't pick him up for another 3 weeks (he's 14 pounds)!

OK, time to go back to bed -- I'm just rambling now.

Good-night Ladies!

Amira

Hi everyone,

Amira, et.al.-  What's my role in the medical field?  That's a very good question which I try to figure out on a daily basis.  I started out as an RN in the emergency room for years then in home health because I felt we didn't have time to teach patients what they needed to know to prevent ending up back in the emergency room.  I later felt like I had taken nursing to it's limits, both in satisfaction, and $$$.  My husband was a nurse also, same path pretty much as me, except ALOT older.  So one day we decided to go to medical school.  After doing everything that it takes to go to medical school, you know- physics, organic chem, MCAT's, ugh, we got it!  On the first day of school, I figured out that our "rhythm method" was a tad bit off rhythm, and I was pregnant with our 4th.  So, I worked and put my husband through medical school, planning that he would put me through after.  It looked good on paper!  Six months before he finished, I started medical school still working fulltime before and after school and on the weekends.  He finished debt free.  By the time I finished I ended up with $70,000 in student loans and $100,000 in credit card debt.  (Not that I had a chip on my shoulder or anything!)  I then had to go back to working as a nurse, managing a home IV infusion company in order to cover home expenses and the red (losses) on my husband's new practice.  about a year later I stubbled into an awesome residency, so I took the leap of faith that the $ would work out.  Eventually my husband closed his money pit of a practice and joined me in the practice I then was in charge of.  Two years ago, yet another leap of faith!  I had finished my residency and my husband and I opened a similar kind of practice on our own but together.  Within 1 month we in the black and it's been great ever since.  We don't play the insurance game here, I don't like insurance people telling me how to practice medicine.  We take care of the uninsured or those unhappy with their insurance doctors.  No appointments scheduled, walk in urgent care at low cost.  So, long story short, I'm a doctor, I do urgent care, and I am by no means a specialist in the colon.  Until I was diagnosed, I had never heard of colonic inertia or a lot of these tests that we've been talking about.  I bet you're sorry you asked- haha.

I was glad to see that there hasn't been a lot of doctor bashing here.  And I will say that it's not easy being a patient, and playing the insurance game SUCKS!  I do not know how those not familiar with the system, wade there way through all the bullsh**.  I too have had embarrasing moments, with my blockage, my GI guy told me to go to the emergency room of the hospital that I used to run the ER.  I said NO.  I'm only 39, but I feel like I'm falling apart.  My bowel care takes longer than my hair care.  I always thought you had to be old to be obscessed wtih you bowels.  You'd think my mom would enjoy hearing my woos.

Anyway, enough of my diarrhea of the mouth.  If my butt were so lucky, I wouldn't have any problems.

I also check here frequently to see if there is any reply, I too, have no life, it's all taken up with my as*.

Later,

Cathy

Post Edited (Cathy W) : 8/27/2005 10:39:16 AM (GMT-6)