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Total Colectomy Part 8

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Posted 1/12/2006 1:22 PM (GMT 0)

Welcome to the group Melissa!  You really have found a great support group!  As you probably read, I had my surgery almost 1 year ago.  I am a full time nurse also.  I had an open procedure done, the scar isn't that bad and is healing quite nicely.  I was in the hospital for 6 days, rested at home for 2 weeks, then went back to work and was perfectly fine, other than getting a little tired towards the end of the day.

I think I lost about 10 lbs during the whole prep/surgery/recovery timeframe.  I was discharged from the hospital w/ a normal diet, no restrictions.  My surgeon told me to use my head about food, you know, if it gives me a hard time coming out, don't eat it again!

Good luck on the 30th, hopefully you will get in and start feeling better soon.

Lesa, I hope everything turns out to be ok.  Good Luck.  We're thinking about ya!

~Somer

Posted 1/12/2006 4:00 PM (GMT 0)

Hello, thanks for your support, I can only pray that my recovery will be like yours!! You were back to work in 2 weeks- WOW. My coworkers are not wanting me to be off for 6 weeks.. I am a workaholic!! Is there anything now that you cannot eat? Did you have an ng tube? Sorry for all the questions, any info at all will help!! Thank you!

melissa

Posted 1/12/2006 4:17 PM (GMT 0)

Welcome Melissa,

You're among friends here.  I had my surgery in Sept. 05, and I eat everything.  Everything comes out fine, I have a fast transit time now.  Eating stimulates movement, if you know what I mean.  By the time I finish dinner, I'm passing lunch.  Not a bit of bloating, pain, cramps, or nausea.  I can hardly believe it.  For me, this didn't come easily, but that's another story.  I lost 27 pounds, but my situation wasn't typical.  I've gained about 6 pounds back, but I did have some to spare before surgery.

Lesa- hang in there, the road can be bumpy at times, but this too shall pass!

I'm working alone today, I hope they are nice to me today.  This is my first time alone since surgery, but I feel really good.  Being home the last two days was really boring, and I felt compelled to cook dinner-ugh!  I even made a cake.  See, I am still sick.

Have a great day, I'll check back on and off when I'm not busy with patients.

Cathy

Posted 1/12/2006 4:26 PM (GMT 0)

Melissa-I was in the hospital for 9 days. I woke up with an NG tube and a rectal tube, as well as a central line. I was glad to have all those, but most of the the girls here didn't wake up with all the tubes and don't feel they're necessary. My only pain now is in one place...a burning/searing sensation that suddenly started Mon morning but I think might be related to putting my arm up too high while doing something Sun. I'm planning on going back to work part-time the week of the 23rd and see how it goes. That will be 2 wks off at home. The md told me not to eat raw fruits or veggies until after my follow-up appt with him on the 18th. Go back and read all these forums starting with Colectomy 1...it's great info.

Oh, and as for my bowels, apparently whatever was going on has resolved itself...I've gone to the bathroom 9 times since midnight! But hey...I'm not complaining!

Posted 1/12/2006 6:40 PM (GMT 0)
Hey!! I am working today, so I will write quickly. I spoke to the doctor's nurse, who told me that if all goes well on my consultation on Jan.30th, the surgery will be 1-2 weeks after that. I may as well get it over with. Cathy, I have read all the posts and have kept up with your surgery and the difficulty you had. You have a great attitude, keep strong! Lesa,I am glad you are doing well. I am very happy to have U.A.B. as the location for surgery, as it looks like a fantastic facility. I am so vain, I am thinking, what will I wear, waht about my hair, nails, etc...!!! Leave it to me. I will look like crap I am sure!! The doc told me to try to gain some weight prior to surgery so I won't look like death when it is all over.  I guess I will try. I have never had any surgery before, no babies, or been under anesthesia. I do not to prep for it- it makes me soooo sick. I am scared. Can they put in a ng tube to help with the prep?? Thank you ladies, I wiill check back when i get off work at 11!!

Melissa

Posted 1/13/2006 2:18 PM (GMT 0)
Melissa, they ATTEMPTED an NG tube 2 or 3 times, but I kept pulling them out.  I had lots of nausea and vomiting, and deep down I knew that the NGT would help, but I just couldn't do it.  There isn't anything I can't eat.  Right after surgery, I had some trouble w/ carbonated things but that only last a month or so.  Emma was admitted and had her prep put through an NG tube.  I didn't.  I started my prep 3 days before surgery and everything went ok.

~Somer

Posted 1/13/2006 10:44 PM (GMT 0)
Hey girls, I am back! Well not yet out of the hospital yet. I have an Ileous, that needs waking up. The urgery went well, it was done laproscopic w hand assisted. On Day 2 I developed an Ilieous, and everyday has it has been a little better. I litterly feel like I have come back from the dead. I am now having IV proteins given to me because I went 7 days w/out nothing. I hope to be released by next Tuesday it will be 14 days in the hospital. I still have the blasted ng tube, but today it has been clamped off.I went 6 hours yeasterday. Today I am trying to do more.I can't wait until I can eat or drink something. Somer was it you who said you developed an Ilieous? How long did yours last?
Thanks everyone for asking about me and thinking about me. I know one thing, I have lost weight. What a way to loose it huh?
Posted 1/13/2006 11:27 PM (GMT 0)
Sasha- I had an ileus also. I never thought I could throw up so much. I was discharged on day 4 and started vomiting the next day. I went to the ER and waited 7 hours to be taken back. I don't remember much after that. I did have the NG tube and pulled it out a few times due to confusion and the thought that they were trying to kill me. Each time, they put it back in. I couldn't say how long I had it in. I did have the TPN like you. I couldn't eat either. Ileus' are very common after any abdominal surgery, not just ours, and alot of us had it. We know how you feel.

I'm so glad that you're doing well despite the NG tube. It only goes up from here. You sound great and with a good attitude, that is so important. Keep up the good work and recovery.

We're all still praying for you.

Cathy
Posted 1/14/2006 6:07 AM (GMT 0)

Hello ladies!  After a LOOONG day, a delayed flight, a cancelled flight, and a threat to have to spend the night in the Chicago airport, I am FINALLY home.  I am a good fast talker, and can get appropriately snippy when I need to... good thing to because when they cancelled our flight I called about another one and they said... tomorrow at 0830 but I refused that one and said "I dont care where we connect, where I have to go, or even if i get my bags... just get me back to Green Bay" LOL, suddenly she found a flight!

Now... onto the update from messages... I will probably forget some things.

Somer - any news from the GI?  Have you tried sacralfate yet?  On an empty stomach that has worked very well for alot of people!

Cathy - you are our group survivor!  I am sooo excited/nervous for your reattachment surgery!  I remember when you had your first one... I always thought they let you out too soon... in fact I think i might have said that... and then I felt very very guilty when you went back in.

Sasha - welcome to the "complications crew" LOL!  When I first came to this website, every single person had had a chipper, sublime outcome with no problems.  Right before me Saramarie had some complications,  but she was the only one.  I remember thinking this group got me through the surgery... and thinking that I would be ok because everyone else was.  Well, I did not go swimmingly... ng tube preop for intractable vomitting and I also had a post op ileus.  Mine lasted for about 5 days... making my total hospital stay a whole NINE days... I give you credit I was going nuts after 9 days... I cant imagine 14 days!  Youll be home soon though... and it will just seem likle a short memory!

Lesa - I would stop using the lomotil.  You should have at least 1 stool per 24 hours, and no more than 3-5 per day.  What is the consistency?  Cathy listed a bunch of food that are bulkers... and those also changes the consistency and frequency of the stool.  I know personally for the first about 2-3 weeks you become very "obessed" with it... but eventually you stop worrying about it.  Aches, pains, and cramping that come and go are normal... if they stay and do not go away at all... then perhaps you can worry slightly... otherwise just relax ... which is VERY hard (as evidenced by my posts during recovery if you read them which were very OCD)

Hmmm I think I got everyone!  We ate at buffets in Vegas... and before we left the hotel... I went to the bathroom... no cramping, no laxatives! :)  Ahhh how nice!

Hugs,

Emma

Posted 1/14/2006 6:14 AM (GMT 0)

Oh yeah my last one, Mellissa - forgive me for sounding blunt, but worrying about your appearance after surgery and scars are about the last thing you should be thinking of.  You do NOT have to have this surgery, regardless of what any doctor tells you.  This is an elective surgery, and you have to be prepared for the outcomes, both good and bad.  Perhaps its the health care provider in me, but I always like to make sure that patients know what they are doing when they sign up for surgery.  Do some research... ask questions.  about the prep... does your doctor not require a prep?  If they do require a prep, you should be able to get them down... perhaps consult with your insurance company and they may approve being admitted one day ahead of surgery for prep (which is what they approved for me because I was vomitting so much that I would have had to cancel surgery) they put a small ng tube (the smaller one is used for feeding and the larger one is used for sucking things out) they also gave me a mg of ativan (sedative) to help me out... but honestly it didnt do much.  Insurance did pay for it... citing that I was an unusual case but I also went through the case manager for this privaledge.

If you have any more questions... please ask!  I would love to help educate anytime! :)

Ok now its time for bed..HUGS

Emma

Posted 1/14/2006 6:44 PM (GMT 0)
Emma- all I can say is TRY SIX WEEKS! If my hair wasn't already falling out, I would have pulled it out! It really is a good thing that I don't remember about 3 weeks of it. I'm glad you are persistant and made it back home safely and timely. We missed your posts.

Cathy
Posted 1/16/2006 10:54 PM (GMT 0)

Welcome back Emma, hope you had a lovely time in Sin City devil

Well the GI increased my Nexium (which doesn't help much anyway) to bid and scheduled me for EGD on 2/7/06- really looking forward to that.  Hopefully, all will be ok. 

Sasha, hopefully you will be able to come home soon.  My ileus lasted 4 days, and I think on the 5th day, I was so terrified of the NG tube that I didn't care how much nausea I had, I wasn't going to let myself throw up. 

~Somer

Posted 1/17/2006 4:00 PM (GMT 0)
Where is everyone? I'm a walking panic attack and my support group/psychiatrist (that would be you guys) is on vacation! The closer Feb. 6th gets, the more nervous I get. I can't even sleep already. I had to get a friend to call me in some sleeping pills. I try to keep reminding myself that this surgery is supposed to be easier, blah, blah, blah, but I can't help but be scared to death. What if they can't reconnect? It's not a sure thing. I have a lot of "what if's". I really don't want to have this contraption the rest of my life.

Please, guys, come back.
Cathy
Posted 1/17/2006 4:51 PM (GMT 0)

Cath - doing what I have done for a career I have seen TONS of reconnections.  They have tested you prior and checked out the quality of the intestinal tissue that is left.  If they didnt think that they could do, they wouldnt, so for them they could care less whether you have this thing for the rest of your life.  But obviously you are a great candidate for reconnection!

I have only seen one case where it was not successful, although I have seen alot of people who had to pack the area where the ostomy was because they could not close it all the way due to infection, yeast, etc.  But, the connected intestine and rectum functioned perfectly fine and the patient eventually did heal the ostomy site from the inside out! :)

What else do you wanna talk about?  Take ambien now and make sure you are getting some sleep!  Also, eat all of your favorite foods... and after surgery PLEASE follow the same diet that my doc put me on... I did swimmingly enough though the diet sucked... it was worth it! :)

Your half psychologist (where is Amira, she is the other half)

Hugs,

Emma

Posted 1/17/2006 11:24 PM (GMT 0)
Thanks Emma, I just needed to know that you're still out there.

Cathy
Posted 1/18/2006 11:23 PM (GMT 0)
Hi all,

I can't tell you how happy I am to have found this message board.  Finally, I've found other people that have "been there...done that" and can tell me what I can expect over the next several months.

First I guess I should start with my story...

For as long as I can remember, i have never been what most people would consider "regular".  about 6 months ago, I noticed that things had started to get worse and worse with my bowel movements now being 10-14 days apart.  I decided it was time to take manners in hand and paid a visit to my PCP, who set me up for a colonoscopy.  When the colonoscopy came back clean, the doc that performed it advised me that he believed I had an atonic colon and referred me back to my PCP-advising that I needed a Sitz marker test.

When I returned back to my PCP, he was not conviced that an atonic colon was my problem and ordered a small bowel series and a BE (ugggh!).  When the results of those two tests came back, the small bowel series indicated "a possible soft tissue mass" and the BE report indicated the presence of an "apple core lesion" in the colon.  Googling all of this, most of the information lead me to believe that I was probably looking at colon cancer.  A few days later, I received a call informing me that another radiologists had re-read my reports and that they disagreed with the original reports.  Next stop-CT Scans of abdomen and pelvis, both of which came back clean...taking us back to the original diagnosis.

The Sitz Markers were finally ordered and I am on day two with them.  My doctor has advised that if what he thinks will happen actually does and they remain in my colon for an extended length of time he will advise me to have a colectomy.  I am not sure what the technical name for the operation is but it is where the small intestine is attached to the anus so that there is no need for a bag.

My wife just underwent a right colectomy about 3 months ago for a totally different problem, so I am somewhat aware of the process but I am still left with a few questions.

My doctor has told me that I will be able to return to work in 6-8 weeks.  However, my job requires that I do some heavy lifting of 50-100 pounds on a pretty much daily basis.  Will I be able to return to that after 8 weeks?  Or will I need even longer until I am 100%?

Do any of you regret having this operation done?  I have read that this changes your bowel habits drastically and instead of once every 10 days or so, I can expect a run to the bathroom several times a day.  This is another problem for me as I spend a lot of time in my vehicle driving from project to project, where bathrooms are not always readily available.  When i feel the urge to go, will I have time to make it somewhere or will my body be telling me, "You can either go now, or I will go for you!"

What about food?  Will I have to change my eating habits drastically?

Along with the atonic colon, I seem to have a lot of gas.  Will the surgery help this at all?  Make it worse??

Are there any surprises?

I appreciate any input you can give me.  While my doctor is a good doctor and considered one of the best in the area, he's not real talkative. :)

Thanks bunches

Chris

Posted 1/19/2006 6:15 AM (GMT 0)

Chris - welcome to the group and glad that you have found us because I firmly believe that we are the best resource out there.  Doctors can tell you from a doctor perspective, but onyl those people who have been though it can REALLY understand!

about your questions, atonic colon essentially means that you have a piece of your intestines that do not peristalsis (or move in waves) to assist the food in moving down the trail.  Alot of us have whole colons that do this, but some people have also had small pieces.  Basically the Sitz marker tests will measure how many of the radiopaque rings are left in the colon at so many days.  "Normal" people clear all of the rings within 5 days... most of us were not able to clear more than 4 rings.  Basically they are looking for how many cleared and also where they got stuck (for example closer to the rectum in the sigmoid colon, or more towards the beginning of the colon in the ascending colon.  Prior to embarking on surgery there should be at least one more test that you have done which is called a defectography which evaluates your defecation muscles and how they function if your stool were to be soft and less formed.

about your results from surgery... everyone is different!  I think I am the slowest moving colon of the group... I go about every one and half days.  Some people go 4 times a day... so I guess I will let them tell you about their experiences.  I have not changed a thing about my diet... the only thing that changed was post op when I had to follow a strict liquid and then soft diet to let the anastomosis site heal (the site where the connect the small intestine to the rectum is called is, and it heals in about 6 weeks and this is where the majority of leaks and strictures occur so they want it to heal without trauma.

Im rambling... you have a very medical group to assist you.  Somer and I are both nurses and Cathy is an MD, Amira is a psycho (haha psychtherapist right?)  Sorry bad jokes occur when I dont sleep!

Any more questions.. just ask!

Hugs,

Emma

Posted 1/19/2006 2:00 PM (GMT 0)

Cathy, you don't have much longer to wait!  I know you are getting nervous, I know I would be.  We will all be thinking about you!

Chris, Welcome to the group!  We all know what you're going through adn exactly how you feel, we've all been there.  Thank goodness we are all headed toward full recovery, if we're not there already.  We would love to answer any questions you have, there are no questions too gross or embarrasing!

Emma, get some sleep girl!  yeah

~Somer

Posted 1/19/2006 7:06 PM (GMT 0)
Hey Everyone Yeah ! I am finally out of the hospital. I was d/c on Monday. I can't believe I was in there for 13 days. I was going to blog on Monday but didn't feel well. I am feeling better now. I have been having lots of cramping is this normal? I also still have diareah. When will the stools return to normal, or will they? I missed talking to eveyone. I am sorry Lesa has been having problems since her surgery. Lesa let us know how you are? Cathy - How long did you have to stay on a soft diet after your Ileus? I ate some blueberry pancakes this morning. The doctor told me to be careful with what I ate. I just really don't want to develop any small bowl obstructions. That is why I am being so careful. Hey did any of you experience any night sweats after surgery? I am having those at least twice during the night. I called the doctor and he wanted me to check my temp. I didn't have any fever.
Talk to you all later,
Sasha
Posted 1/19/2006 7:18 PM (GMT 0)
Hi Chris- Welcome to the group. This is a great group. How many days has your sitz marker test been going? I had to do 5 and 7 days. I had Colonic Inertia, which means slow to no motility of the colon. I had five in a half foot of colon removed. Have you been to a surgeon yet?

Blessings,
Sasha
Posted 1/19/2006 11:09 PM (GMT 0)

Sasha- I was pretty out of it for the next 2 weeks after the ileus and then I had to have surgery again so I was on TPN.  I was in the hospital another 3 weeks or so and couldn't eat much.  I went home on a feeding tube and ensure feedings all night long, until I couldn't take the gagging of the tube any longer.  When I did start eating, I ate the low residue diet, however my surgeon wanted me on a thicker diet (to prevent dehydration). 

Welcome to the group Chris.  I think that you're the first guy (as the patient) in the group.  Be prepared, there's a lot of estrogen in this forum.  There's also a wealth of knowledge and experience.

Somer and Emma- thanks for keeping me grounded.  I wish all this was done so that I could move on, but we play the hand that we're dealt.  So, I wait, but not too much longer.

This week has been hard.  I'm working alone.  They're painting the inside of the house this week and my husband is home watching (not really- he's helping move things around.)  M, T, &W were very busy, but today is not so bad.  But I'm exhausted.  Also the weirdest thing is happening.  Tuesday, I got this sharp pain in my butt (no, not my husband) so when I went to the restroom I felt pressure there.  Since then I've been passing small amounts of whitish goo stuff which I assume is barium left over from all the CT scans.  It's really gross and freaky.  I see the surgeon Tues. for my pre-op appt, so I'll ask her about it then.

Hello to Amira, Melissa and Lesa.  Hope everyone is doing well.

Love ya'll

Cathy

Posted 1/20/2006 12:34 AM (GMT 0)

Hello everyone, I have been working constantly...Been too tired to write, but check here everyday to see how things are. My appointment with the surgeon is a bit over a week from now, just want to get it done and over with. Emma, I know you were concerned about the comments I made about my appearance post op, I am sorry. I know it should not matter but it does.I was treated for anorexia/laxative abuse for years so I guess it is part of my body image issue. Being a nurse I should know better, but it is hard!! I am tired of putting enemas in my butt, they aren't hardly working anymore... I could go weeks and not poop, and it has been awful. I am glad to have found you ladies(and one guy)... I am gonna go for now, will talk to you soon!!

Melissa :-)

Posted 1/20/2006 1:09 AM (GMT 0)

Hi all,

Thanks for the warm welcome.  It's good to be able to talk to others and finally get some information. :)

@Cathy-I guess I'm just lucky.  I found out about a year ago that I had hashimoto's thyroiditis, another condition primarily found in women.  Maybe I'm just too in touch with my feminine side? :)

@Sasha-I go to take my first set of xrays tomorrow, which will be day at 72 hours.  I go back on Sunday (day 5) and again on Wednesday (day 8).  I've seen a surgeon several times so far.  As a matter of fact, he is the one that ordered the sitz ring test.  I am to go back and see him as soon as we finish this up to "discuss my options".

@Emma-How long after your surgery did you have to follow the strict diet?  When my wife had her partial colectomy, she couldn't eat for 5-6 days, but was pretty much released to normal food once the NG tube was removed.

Thanks for allowing an estrogen challenged individual into the fold. :)

Chris

Posted 1/20/2006 3:47 AM (GMT 0)
Hello, my name is Sandy and I am scheduled for surgery on 31 Jan 06.  I am so scared.  I am having the same surgery as Lesa.  I had the opportunity to meet her at the surgeon's office yesterday, she looks beautiful.  We talked and she told me about this site.

I am a wimp.....I have anxiety and always have a hard time waking up from surgeries.  I dread the NG tube, but I don't want to vomit either. 

Please reassure me that the surgery will go well and all work work out.  I felt like God placed Lesa in my path yesterday and I know his hand is in this, still I am afraid. I just want a better quality of life - without bloating, gas, constipation and pain.

Sandy 

Posted 1/20/2006 3:55 AM (GMT 0)

Chris - wow you must be in touch with your female side... LOL just teasing you!  The sitz marker test is the gold standard for diagnosis, the rest of the tests are just rule out tests that make sure you dont have something.  The sitz test is the only rule in test... so it is very very important! Keep up in touch with the results... and CHEAT and ask the xray tech to see your x ray or tell you how many are in... if they wont tell you... ask to see your xray... they are easy to count! :)

Sandy - sure sounds like the Lord is working for you to have connected you with Lesa in a place like that without prior meeting.  Think of all of the things that had to be in place for that to occur.  I am sure you will be fine with the surgery... just be aware there is some pain... but if you are fine with that you will be fine.  There may be some nausea, although with the ng in you probably wont notice any.  Honestly you are too out of it the first couple of days to care... and the ng is put in during surgery which is much nicer than being awake!  Ask away... I swear me are the experts! :)

Chris - what the reason your wife had the colectomy?  The reason will determine the diet... and whether she has history of obstructions or adhesions.  Every doctor was different, but I believe mine may have been the most conservative when it came to eating... I was on nothing for one day, clear liquids 4oz per 8 hours for 2 days, 8oz per 8 hours for one day, full liquids 8oz per 8 hours for two days... then unimited full liquids and then the ileus developed!  Make sure that you can drink at least 64oz of clear liquid daily before you leave the hospital because it prevents dehydration and also makes sure that you do NOT have an ileus.  Now, I was NPO and clear liquids for another couple days (i spent 9 days in the hospital) when I went home it was full liquids for one week, and soft low residue foods for two weeks.  It was worth it... no adhesions, my anastomosis site is great, no complications (well not internally anyways)

Night all,

Emma

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