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Total Colectomy Part 8

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Posted 1/20/2006 4:14 AM (GMT 0)
Emma: Thanks for the encouragement. Get this too, Lesa and I are from the same town and that is three hours away from the surgeon's office and the hospital. So I know God is working in all of this.

Please just keep me in your prayers.
Posted 1/20/2006 12:57 PM (GMT 0)

@Sandy-While my surgery isn't scheduled yet it is a foregone conclusion I believe and I understand just how nervous you are.  I too dread the NG tube but even worse than that,  I dread the danged cathether.  However, the people here have helped me greatly as I haven't seen anyone say that they regretted having the surgery.  In cases like this, I think you just have to let go and let God.  We are all here pulling for you!

@Emma-My wife was bleeding internally and was passing a large amount of blood with every bowel movement.  Colonoscopy turned up normal so they finally did the test where they remove your blood, add a radioactive marker, then re-inject it back into you to see where it is going.  The doctor ended up removing all of her right colon plus a part of her transverse and the bleeding has stopped.  The report she got a few weeks after surgery told her where she was bleeding and why she was bleeding but could not pinpoint what had caused it.

My sister in law works in the radiology dept at our local hospital, so I kind of have an unfair advantage when it comes to finding out what was seen on a given test. :)

@Everyone-What is the deal with potassium and this surgery?  I have read on this board and others where a lot of people have had to have potassium while in the hospital.  My wife had to have 5 bags herself.  Just curious.

Time for me to go get xray #1 (day 3).  It's kind of a waste of film as I can tell them with 100% certainty exactly how many are left at this point....all of them! :)  With a little more practice I might even be able to pinpoint where they are as well. :)  *sigh* then it's off to work.

Will check back in later.  Have a great day all!

Chris

Posted 1/20/2006 4:13 PM (GMT 0)

Hi Everyone,

I have not posted in a long time and don't have a lot of spare time, but there are a couple of comments I wanted to pass along.  First, I just wanted to tell Sandy that my surgery date was January 31 last year, so I hope the date brings you luck :)  My quality of life is much better now, and I can't believe that it's been a year.  It went so fast....

Melissa, I just wanted to tell you that I think you will be much better off after the surgery, even with scars.  If you have it done laparoscopically and treat your incisions well, they will heal to the point of being very hard to see.  Everyone is different, and it's amazing how your body heals...and it really is worth it to feel better.  For what it's worth, after suffering from constipation for so long, I started having body image issues, knowing that all the bloating and fullness was not the way I should have looked if I had been healthy.  It's hard to change that thought process and not be so self-conscious, but I really hope you can get past it before or after your surgery.  I lost some weight in the hospital and have evened out, but I also exercise a lot and feel good...so much stronger than before. The strength and energy outweigh the scars and occasional bloating now. I finally feel like I have control over my body -- and not to sound like a psychologist, but eating disorders often stem from control issues, so it's all related.  People used to think I had an eating disorder because I was weird about food due to the constipation.  It was really frustrating.  I'm sure there are others on the board who may feel the same.  To top it off, when I was laying on the gurney, with the IV, about to be wheeled into the OR, my anesthesiologist was asking me the normal drug/allergy questions...and was having trouble understanding why they were removing my colon.  When I explained (I assumed she was doing this to educate herself as well as to make sure that I was mentally stable), she asked me point blank in a not-so-nice way if I had had an eating disorder.  I was appalled and immediately angry -- which was lovely considering all the stress I was under right before they wheeled me in.  I had a migraine and had already vomited from dehydration since they were running late on the surgical schedule that day. She asked me over and over and I finally changed the subject...and what I really wanted to say to her was even if I had had an eating disorder, what the heck difference does it make now anyway? It was not her job or her place to be quizzing me like that.  My body was not working properly, and for whatever reason, those nerves were not going to spontaneously start moving things along again through my colon.  My surgeon was amazing, thorough, and not about to perform surgery if he didn't think it was a good option.  That was my only negative experience with anyone...and thankfully I never saw her again after she put me out! But I really believe that she didn't have a right to ask me that -- and for your sake, I hope you know that surgery is a good option regardless of what medical or emotional reasons bring you to this point, and hopefully the increased control over your bowels after surgery will help you feel more free and energetic about life.  Maybe this doesn't seem related to you, but I thought the story about my anesthesiologist might help...at any rate, I hope you have good feelings about your docs and the surgery. 

Avery

Posted 1/20/2006 5:06 PM (GMT 0)
Hey Sandy, I think it is great that you here. God lead me to this site too. I believe he has the power to do anything or change anything. I hope you are at peace about this decision. I was after much much prayer and counciling from the group. I too am a previous constipated person. I had Colonic Inertia,and now thankfully am on the road to a much better life. I was one who wasn't lucky enough to have the dreaded ng tube durning surgery. I didn't get it until after I had developed the Ileus,then I was already throwing up. I finally begged for it to be put in. Make sure if you don't get one before, you ask for Adivan to help sedate you long enough to put it in. I hope and pray that everything goes well for you. I haven't talked to Lesa since her surgery but hope she is doing much better.

Chris- I know how frustrating, the wait for those sitz markers can be. I had to take the test three times before my surgery. I forgot to go back on day 7. Kids can do that to you.

Melissa- Keep your chin up. I think you will be glad you had the surgery after. You will be in my prayers. You are with a great group of people. We will all support you.

Lesa- How are you? I want to talk.

Emma,Cathy, Somer- How long until you can resume your normal activity?? Even you know what?LOL

Blessing to you all,
Sasha
Posted 1/20/2006 5:39 PM (GMT 0)

You know what - about 3 weeks.  Normal activity with alot of tiredness will resume at about 3 weeks, although you are slightly different because you spent so much time in the hospital.  I was out of the house on day 9 of being home and driving by day 10, but then again I spent 9 days in the hospital.  So, just let your body be your guide.  I started housework 2 days after getting out of the hospital... very light stuff, and started putting some items on ebay but I would work for 4 minutes and rest for another 4 ... good way to get stuff done!

Everyone says 6 weeks is the magic number! Then you feel totally like yourself!

Hugs... the worst is over and it is all much easier from here,

Emma

Posted 1/20/2006 8:23 PM (GMT 0)
Chris - I hate the cathether too, I always get an infection and I have bladder spasms also. I did the sitz marker test 2-3 years ago, so they did not repeat it; of course, it would have only been worse now.

Avery - January 31, is that neat or what? So has this last year been wonderful? Do you still bloat and swell and can you eat anything you want? Did you loose weight and did you gain it back? I am miserable and cannot fit into any of my clothing. There are days when I get so depressed. I am soooo scared, but am trying to get a mind set and know that the best is yet to come.

Sasha - My peace is coming from the fact that I know only GOD could have arranged for Lesa and I to be three hours away from our home town at the same surgeon's office and her having already had the surgery, me facing it and having the opportunity to talk with her. I am still so afraid and dread all the aftermath - please keep me in your prayers.

Thank you all for your support, this is a wonderful site. Thank you Lesa for sharing.
Posted 1/20/2006 9:19 PM (GMT 0)

Sandy and Chris - have you both went back and read all of the other sections.  There is total colectomy 1, 2, 3, 4, 5, 6, 7, and 8.  WOW ladies... this thread is getting long! :)

Hugs,

Emma

Posted 1/21/2006 3:13 AM (GMT 0)
Day 3 Xrays of Sitz markers show 22 rings scattered throughout the colon, with one trapped way back where the small and large intestine come together.  *yawn*  I'm tired.  G'night all.

 

Posted 1/21/2006 3:10 PM (GMT 0)
Does anyone remember how many rings they start out with? It's been too long for me to remember.

Cathy
Posted 1/21/2006 4:22 PM (GMT 0)
24 little radiopaque spaghetti o's are located in that bill pill I think... i had 22/24 retained (somehow 2 slid out but they arent sure how) :)

Posted 1/21/2006 5:19 PM (GMT 0)
Kinda the same thing with me.  Either they shorted me two or two of them spontaneously combusted, cause they never went out the out door!

 

Posted 1/22/2006 2:16 PM (GMT 0)
Ok all, I just came back from my 5 day xray of the Sitz marker exam.  On day 3, we found 22 out of 24 markers.  There may have been more, but that's all our untrained eyes could see (the tech that did the xray wasn't familiar with the test).  The markers were scattered primarily across the transverse and descending colon with one marker trapped way back at the beginning of the colon.

Since then, I had one small bowel movement (which generally doesn't happen that often).  When I went in this morning, we could only see 3 or 4 of the markers.  The ones we could see where actually very faint on the xrays and did not show up real well.  Is it possible that my colon is so full that it is making the markers so faint that I just couldn't see them?  I just find it hard to believe that I passed 18 markers in one small BM.  You would think that with that high of a concentration they would have been visible in the stool, right?

While noone wants to have to have surgery, I was actually relieved when I was under the impression that relief was on the way.  Now I am concerned that with what we saw this morning, I am going to end up having to deal with this for an indefinite amount of time. 

What constitutes a "normal" transit test?  Will the fact that I was still retaining 22 out of 24 markers (and there should have been 24 as I had not had a BM before then) on day 3 qualify me for the surgery do you think?  Or will they look at the fact that most of them seem to have passed by day 5 and decide that I am not.  I know that any answers here are complete conjecture and only my doctor will be able to give an answer but I am looking for opinions only.

Thanks in advance for any input.

Chris

 

Posted 1/22/2006 3:16 PM (GMT 0)
Hmmm, I was just sitting here googling Sitz transit study and I found something that said that you should be off laxitives and no enemas for a minimum of 3 days before you begin the marker test.

I had a double contrast ct scan on Monday, which meant I had to drink a large bottle of barium solution on Sunday night, followed by another large bottle on Monday morning.  I've always been told to take a laxative/use an enema to make sure that your system flushes out all of the barium as it can "harden up like concrete in your colon" if allowed to remain.  Monday afternoon I took 4 dulxolax and had an enema Monday night.  As laxatives usually don't affect me for more than a day, I took the marker pill on Tuesday morning, then did my 3 day xray on Friday.  There were no BM's during that time.  On Saturday night, I had a small BM, followed by my 5 day xray on Sunday morning, which I discussed in my previous post.

Of note is that I had more abdominal pain than usual this week, even with having a BM that I normally wouldn't have had in that time.

If the doctor considers my results to be normal should I advise him about the laxatives/enema that I had taken on Monday?  Do you think that it could have affected my test that much?

Thanks again,

Chris

Posted 1/22/2006 4:10 PM (GMT 0)

Hey guys, haven't posted in awhile, been really busy w/ work and getting a new car! yeah

Welcome to the Group Sandy, you'll love it here!  We all do. 

Chris, I agree w/ Emma, 3 weeks (w/ some relative fatigue) is when I felt "back to normal" so to speak and even went back to work.

Well, hope everyone continues to do well and feel well, gotta go for now.

~Somer

Posted 1/22/2006 8:29 PM (GMT 0)
Hey Emma- Thanks for the advice for the u know what? I told my husband that after tomorrow I would know when we could resume to our regular activities.

I go tomorrow for my follow up appt. I am feeling much better now. My BM's are getting more of a consistancy,and aren't as frequent as before. I am just really tired by the end of the day. I ate something last night that was I guess a little harsh on my system so I had some cramping. It finally went away this morning. I won't be eating anymore chicken enchaladas for awhile.

Chris- I had to take the sitz marker test several times. The first time my GI gave it to me before he decided to do the colonoscopy, instead. Then my GI surgeon order it but I was unable to take the x ray on day seven. I had to redo it all over again before he would do my surgery. Make sure you let the dr know you took the laxatives when he reads the xray. I still sounds to me like you have slow to no transit even after your one BM.

Somer- congrats on the new car!

Sandy- I sure will keep you in my prayers. I will pray for peace of mind for you. I am glad I had the surgery,even though I had complications. God still brought me out of the danger I was in. I trust him more now than ever because of it. Read Philippians 4:6. It will help I promise.

Lesa- How are you?
Cathy- How are your spirits? I am praying for you too.
Melissa- Trust in God, he will help you through this.

Blessings to all,
Sasha
Posted 1/22/2006 8:41 PM (GMT 0)
Hey one other question. Is it normal to not have much of a sex drive after the surgery? I had one before, but now I don't. I hope all will return to normal. I might just be scared I will tear open stitches. I am probably just being too careful.? I don't know. Just thought I would ask.

Blessings,
Sasha
Posted 1/22/2006 11:19 PM (GMT 0)

Sasha- don't rush it.  Fatigue plays a major role in desire.  You'll know when you're ready.  I was scared to death the first time.

I had the hot flashes too, especially at night.  I felt like I was sweating all the time, particularly around my neck. They kept checking for fever but I didn't have one.  It was really strange.  Then one day it just went away.

Chris- are you doing the 7th day xray?  Maybe you'll know more after that xray.  They should probably make you redo the test.

Somer- more details!  What kind of car did you get?  I need a new car, but I don't want one.  It is 6 yrs old with 100,000 miles on it.  I like it better than the new cars that we looked at, so I'm keeping mine until it starts to give me trouble.  So far, so good.

Those markers, I hadn't passed any by 7 days out.  My GI couldn't believe it.  Like everyone else, he thought it was all in my head.  Where it was was in my as*.  I never actually saw any of the markers in my stool either.  Now, however I see everything.  Two weeks to go.  I've been hearing stories of failed reconnections, that makes me a little nervous.  I am way ready to be done with this (ileostomy.)  I make weird noises when I'm examining patients.  I usually just laugh and say that I'm hungry, but that is not realy the noise that I'm making. 

I've got low battery so I gotta run

Love to all

Cathy

Posted 1/23/2006 4:20 AM (GMT 0)
Cathy - I am scheduled for surgery on 31 Jan and I am scared. Do you have an ileostomy? Did your surgery go wrong and will the reverse it? What causes it? I am also wondering if all the bloating, cramping and all will disappear after my surgery. No matter what I eat now, my stomach swells and cramps, etc., What all kind of foods will I be able to eat afterwards. I understand that it is really painful and the NG tube is bad, did you find that to be so?

I hate surgery and the initial waking up, I generally have problems. I have anxiety and panic attacks. At this point, I am miserable and depressed. Please pray for me.
Posted 1/23/2006 5:19 AM (GMT 0)

Chris as the only male in here, cover your ears for a second...

Sasha - this is a bit TMI but the first time we had it, I had trouble relaxing and letting go.... you know "getting off" LOL it took forever because I was tense about it... you are NOT going to tear anything, or hurt anything (unless you have anal) so just relax and enjoy it... tell hubby to be gentle (perhaps you might want to try sideways or you on top) Ok... thats enough sex talk!

Chris - open your ears and answer some questions (but dont read whats above here, LOL) what are your BMs like, how long do you go, etc.  At this point I would question whether your Sitz test is normal?  The enemas shouldnt have stayed in your system that long but anything is possible!  What laxatives, stool softeners, etc have you tried.  You should exhaust every possibility before you try this surgery... tell the nursie more! :)

Somer - nice to hear from you.. how is the GI problem coming?

Posted 1/23/2006 5:24 AM (GMT 0)
Emma: what causes an ileus or a blockage and can this happen after you get home. What time frame do you no longer have to worry about these. I live three hours from Baylor (where I will have my surgery) and am wondering what will I do if the happens when I get home, I will freak out. We have a hospital here, but I would not let them do surgery on me (unless it was indeed an emergency). If this happens and they have to put the NG tube down, why can't they give you Versaid - so you won't remember?
Posted 1/23/2006 5:30 AM (GMT 0)

Sandy - LONG story for you... I dont know how much of the previous posts you have read but here goes...

I had the WORST time with the prep, probably worse than anyone else here I think.  I had to be admitted for the prep to be put down an ng tube because I couldnt stop throwing up.  So they put the tube down and started the prep... (by the way took 4 times to start my IV too) anyways prep going well, until I got nauseas and then threw up... the prep and the NG tube...I cried HYSTERICALLY because I felt horrible and I was failing... I called my mom and I was going to give up... I even told the nurses... I cant do this.  Do you know what I thought of... all of the TCC ladies... I thought I can do this... I let them put the tube down 4 more times... but it was not successful any of those times.  Finally they mixed the prep with TANG and although I was still throwing up, I managed to drink 16oz (not nearly enough) finally exhausted, stressed, and crying... I decided to go to sleep... and I figured surgery would be cancelled.  In the morning, there was planned tap water enemas and I honestly thought they would have to cancell the surgery..... only magically enough 3 enemas... and I was clear... dont ask me how... I STILL think it is a miracle.... dont know how else to explain it! :)  Just thought I would share.... after surgery... I made it through those days... with a little guardian angel... my surgeon was the BEST doctor ever, even though I didnt think so everyday... but really he gave me everything I needed and then some!

Long story, but I am praying for you every single day!  Just know you have the TCC team on your side! :)

Hugs,

Emma

Posted 1/23/2006 5:40 AM (GMT 0)
When you have surgery, all of your muscles are paralyzed including the rhymic contraction of your intestines.  As you come out of anesthesia, nurses will listen for your bowel sounds which is how we tell if the intestines are waking up.  Ocassionally a small piece of that intestine has not quite woken up like the rest... and when food/water hits it... it rejects it and quickly!  Basically the only treatment for an ileus is time... you do not HAVE to have an NG tube, but the idea is that it usually prevent you from throwing up if it is sucking out. 

Ok, now the purpose of eating and drinking in the hospital is to make sure that you dont have one.  If you can have food go from one end to the other... you will not have one!  So as far as worrying about developing one when you go home, very unlikely!

Sorry... I am the GI/Ileus master! :)

Hugs,

Emma

PS.  Something I forget to mention before when you were asking about ileostomies... any good doctor worth his salt will tell you that there is automatically a 2% chance of waking up with one... now Cathys ostomy was from a complications and so far no person in our TCC list has ever come out of the first surgery with an ostomy, but you have to be prepared for that.... would you rather live life the way you are, or could you live with the ostomy.  I teach patients that you have to be prepared for the WORST case scenario then you can live with whatever else happened.  I would have lived with an ostomy... because I couldnt live with my consitpation, bloating, etc.  But I will admit, I didnt want... and I did reach from my side as soon as I woke up... :)

Posted 1/23/2006 6:19 AM (GMT 0)
Emma: What a trooper you are, I would have probably walked out after all the trouble you had with the prep.

Thank you so much, you have put my mind at ease (as much as it can be right now). I am worried about scar tissue. I have had hys (age 24), no endo, left one ovary. Then over the next seven years, two lap surgeries for endo and removal of the ovary. Was going to do that with lap and had to open me up due to scar tissue. I also had foot surgery and had scar tissue to the point that my toe is stiff. So I guess my body produces excess scar tissue and I am concerned about that.

I have tried to imagine coming out with an ostomy and like you, I am so miserable and depressed (due to bloating, constipation, etc., ) that I am thinking I could adjust. However, I have not researched much about ostomies, but have talked to a lady that has one and she says life is so much better than before her surgery.

Were you in SEVERE pain when you woke up? How long did it take to get the pain under control? You did not wake up with an NG tube, right? My surgeon told me I would be in recovery overnight. The will insert a direct line and the aneth. will administer the pain medication, some new stuff - like Lesa had.

Please keep praying for me, I am sooooooo scared and feel like a wimp. I just know my anxiety and panic attacks and they are horrible. I had sinus surgery a couple of years ago and woke up with the packing in my nose and had a panic attack and I could not breathe and they were telling me I was fine, relax, but I was about to pass out, because I could not get any air ( it was real to me), they were monitoring me and telling me I was fine, but I was trippin'!!!!

Thanks for your help, this is a wonderful group.
Posted 1/23/2006 12:41 PM (GMT 0)

@Emma-Normally I will go 7-10 days in between bowel movements, with the occassionaly stretch out to 14 days.  When I had to have my clean out for my BE, my exam was scheduled for a Thursday.  On Tuesday, I was told to take an over the counter laxative to get the barium out of my system from the small bowel series I had done on Monrday.  On Wednesday, I started the prep kit.  On Thursday morning, before leaving for the hospital,  I was passing clear fluids.  However, when I arrived at the hospital, xrays revealed large amounts of stool still in the ascending and transverse colon.  I was given another prep kit, and the procedure was rescheduled for Friday.  On Friday, I had been able to move some of the trapped stool but enough remained that there was debate whether to perform the BE or not.  So, as you can see,  things ain't normal down South. :)  This week has been way off the norm with 3 BM's in 7 days, albeit very, very small BM's.  Normally they are very firm, with rabbit like hard pellets. 

What brought all of this on to begin with was the fact that even when I felt like I just HAD to go to the bathroom, I would have to strain..strain..strain...to get anything accomplished.  This brought on a situation that at first I thought was a rectal prolapse.  Tissue pushing through the anus upon defecation but finding it's own way home immediately after.  My doctor sent me to a surgeon with that diagnoses.  The surgeon said that instead of a rectal prolapse, I had a severe case of hemorrhoids.  He advised that the hemorrhoids were a complication of some other issue and that it would be pointless to treat them until we find out what's causing my transit problems.  Correct that...and the hemorrhoids should correct themselves over time.  Other symptoms include being a bit gassy and occassionally seeing mucus (rarely blood streaked mucus) being passed along with my stool.

At day 3 of the Sitz test I had pretty much all of the markers left.  At day 5, there were some, but I don't know the exact amount yet.  I'm going to place a call in to the radiologists this morning to get an exact count.

Is retaining 24 out of 24 markers after 72 hours normal?  I have read that normal transit time is less than 72 hours.  By that logic, having any left in your colon post 72 hours is abnormal, correct? I can tell you with absolute certainty that the markers were in my body for 106 hours before any of them left.  That was 12 hours before the day 5 xray.

I've used enemas, both the fleet and plain water, duldolax, ex lax, correctal, Magnesium Sulfate (Epsom Salt) mixed with water..etc.  If it says for constipation, I've tried it.  I tried adding a fiber supplement to my diet (Psyllium husks).  By day two my stomach was so full of gas that I couldn't sleep all night due to the cramping and the actual passage of the gas (wife wasn't too happy either. :)

I have dealt with this for all of my life, it's just gotten a lot worse over the past 6-12 months and I am having more and more pain, discomfort, and bloating as I get older.  I am just sooooo ready to have this resolved so I can get on with my life.

Thanks again all, I'd love to stick around and wait on the answers, but I've got to head to work.

Chris

Posted 1/23/2006 4:37 PM (GMT 0)

Not much time to post Chris, your story sounds like everyone elses, although I will say you frequency is a bit more than some of us were... for example I could go a month without a decent size BM. Also, have you tried miralax... if you havent tried that yet I would back up and try that right away... alot of patients have had complete relief with taking this 3 times a day... something to look into if you havent tried it!

Hugs,

Emma

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