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Total Colectomy Part 8

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Posted 1/5/2006 1:24 AM (GMT 0)
It looks like we're on to a new part (8).

Somer, I'm so sorry you have to see another GI.  I also hoped I'd never have to see another one as well.  But it seems that I have to 7 years from now when I'm 50 for a colonoscopy; even that seems too soon.  Still, congratulations on your 11 months of recovery.  Today is my 5 months anniversary and I feel great :-)

Mary, I agree with Emma, the ICU and the NG tube seem like an overkill.

Lesa/Todd, hope everything is continuing to go well.

Amira

Posted 1/5/2006 2:27 AM (GMT 0)

WOW - part 8 - we are something of a real support group!  Think we will make it to part 20 :)

Amira - nice to hear from you again... how are things going with you?

Somer - yeah seeing docs isnt fun, but you have been through the worst.  An EGD is way easy, no prep involved just an IV! :)  Let us know how it goes and what they decide.  Dont feel too bad, I have to have an EGD done this summer I think as a following up for the bleeding ulcers.

Lesa - how ya doing?

Sasha - how is that prep coming?

Hugs,

Emma

Posted 1/5/2006 6:39 PM (GMT 0)
Hello, I'm new here and would like to add my story. I know Emma (from email). I had a total colectomy with ileorectal anastomosis for colonic inertia in October of 2004. It was the best thing I ever did. The first 9 months after surgery were rough, but it DOES get better! I had a few minor complications from the surgery but nothing too bad. I'm so glad I did it!!

Maura
Posted 1/5/2006 6:47 PM (GMT 0)

**waving frantically**

Hi Maura!  So good to hear from you again!  I second your notion and I just wanted to let you know that you are one person who really gave me strength to do this.  Luckily I found this group also, which has been my rock during the pre op and recovery period! 

What is new in your life? :)

Hugs,

Emma

Posted 1/5/2006 6:49 PM (GMT 0)
Oooh funny story for the group...

DF and I wanted to have our wedding on Oct 6th, but it was not available, so the family was trying to push me into the 20th.  Never liked the date... seemed important already somehow (the number 20) but couldnt figure out why... well duh.. July 20th was the date of my surgery! :)

Anyways, the wedding is going to be Sept 22, 2007 :)

Hugs,

Emma

Posted 1/5/2006 7:17 PM (GMT 0)

Welcome to the group Maura! tongue

Emma, congratulations on the date!  I know it really starts to seem "real" when you have the date picked.

I feel like my esophagus is on fire! mad   I have never had this feeling in my chest before.  It's almost like someone has a fist around my throat.  It's awful!  My appointment is 1/11 so hopefully I'll get some relief soon.  Not really looking forward to the EGD, but I know it won't be that bad.

~Somer

Posted 1/5/2006 11:39 PM (GMT 0)

Welcome Maura, it's always nice to have a seasoned recoveree on board.

Somer, hope you get relief soon.  That burning sensation can be awful!

Emma, you must be so excited.  I love weddings!  Is the group invited eyes   That's what you need -- a little more guest-list pressure tongue   I'm bad devil    Seriously, check out ourweddingstorybook.com and let me know what you think. 

Florida is great.  I'm loving the weather and going to the beach almost daily.  I'm not bored yet, and don't think I will be any time soon.  I also forgot my cookbooks at home (on purpose of course) and I can't tell you enough how I've enjoyed eating out almost everyday and not having to concern myself with my stomach.  It's such a new experience still.  I see something on the menu and first think how it would be great if I could have it, then I remember that I can :-)    Life is good.

Lesa, how's it going?  I hope you're home by now and sleeping well.

Love, Amira

Posted 1/6/2006 3:56 AM (GMT 0)

Well here I am...back from the dead! Sorry to keep you guys hanging a few days. I came home yesterday yeah It's a 3 hr drive, and by the time I got home I felt really bad. I'm having a lot of trouble staying hydrated and keeping my electrolytes balanced. I kept having to have potassium in the hospital, and it really makes you feel bad when it dips. Almost had to go to my ER last nite for IV fluids/potassium. I feel better today, but it's really hard to stay ahead of it! And I remember a couple people talking about their palms peeling (Cathy maybe??) What's the deal with that? My back's bubbling up in all these tiny little blisters and starting to peel. Malnutrition or something I guess. I don't own a scale but I'd say I've already lost around 15 lbs. Crazy. But overall, it's really been much easier than I had feared.

I'm glad to hear that everyone is doing so well. I'll check in again later. To be honest, I haven't been turning on my computer much at all so I won't be tempted to do some work!!

Oh...and has anyone heard from Sasha?

Posted 1/6/2006 3:44 PM (GMT 0)

Welcome home Lesa.  You sound great, despite the peeling, which I know nothing about because I didn't experience it.  I do remember all the potassium they gave me, but no side effects from it that I recall. 

Just relax for a while, don't even think about working and take care of yourself for at least the next week. 

Take care, Amira

Posted 1/6/2006 7:14 PM (GMT 0)
Lesa, glad everything went ok.  I never had to get Potassium while in the hospital, but I know that is very caustic to the vein.  I also never had any peeling or skin problems after surgery. 

Stay away from the work!  Just rest.  smurf

~Somer

Posted 1/6/2006 7:38 PM (GMT 0)
Welcome to the group, Maura. You're in good company.

Hi Lesa,
Welcome home. I was the one who peeled. My palms, my soles, my face all peeled. I also had a thick coating on my tongue that made everything taste blahhh. It took a while but I got over both.

Somer- I hope you get to feeling better. My daughter has chronic reflux. It's a real pain. She complains almost daily of stomach pain. She's had 3 EGD's and she's only 12. You can handle it, especially after what you've already been through. Maybe they'll find a solution.

Amira- FLorida sounds nice. Phoenix isn't too bad either. We can't complain about the weather. I can't seem to find the beach though. They told me it was on the west side of town, but I haven't found it yet. HAHA.

Just in case anyone besides me is keeping track, surgery in 1 month from today. Not that I'm counting or anything, but that would be about 31 days.
No pre-ops and only clear liquids the day before and NPO after midnight. Yeah baby! No nasty, make me want to vomit, tang doesn't work for me, stuff this time.

Initially, given everything that I had been through, I was scared to death of another surgery, but I am very ready to get rid of this bag, I'd like to put it all behind me. LOL. Really though, if I could handle that, then I can handle this!

I'm at work, pretending to be working, so I should go and see what kind of trouble I can get into.

Love to all,

Cathy
Posted 1/6/2006 9:20 PM (GMT 0)

Cath - how nice that you dont have to do a prep.  I suppose it is because things move pretty quickly in your system!  I have been told that I will never have to have prep again too... and when I need to have a colonoscopy all they have to do is an enema.  I am sooo excited for your surgery... and funny I was logging on to remind you about the one month until surgery thing! :)  You will be great in surgery.. you have already been through the worst, so it can only get better, right!

Sorry Im relaxed, happy, and freaking merry sunshine lately,

Emma

Posted 1/8/2006 11:22 PM (GMT 0)

Hmmmm where is everyone?!!

I am off for Vegas at 5am tomorrow morning, so I just wanted to say adios to all and I will check posts when I get home.

Somer - hope your appt with your GI goes well, please let me know how it goes.

Lesa - hope you are recovering well and without any problems... remember TAKE IT EASY and that means for food AND activity!

Sasha - how are you doing?

Cathy - time is getting closer and closer!

Posted 1/9/2006 5:26 PM (GMT 0)
Emma- Vegas sounds like a blast. I've been dying to go. We only get Sat afternoon and Sunday off each week, so it makes it hard to go anywhere. We do take quick trips to Vegas once in a while though. We saw Barry Manilow there last summer, but I'd like to see Celine's show. Have fun, enough for all of us.

No word yet from Sasha.

Somer- Good luck with your appt. The sooner you know what it is, the sooner it can be fixed. We're all praying.

Lesa- continue to recover, the key, like Emma said, is to take it easy. Don't over do it. Look for the little improvements, and know that you are making progress even when you feel like you're not.

Zoe- hope you are doing well, and we miss you.

Amira- Florida keeping you too busy. We miss you too.

Maura- How have you been doing?

As for me, the weekend went by way too fast and it's Monday which is usually busy. We've been remodeling some in our house, so I think that I'll be home tomorrow- yeah! I've been working fulltime for the past 3 weeks. I feel pretty good, but I'm exhausted by the time I get home. The last thing that I feel like doing is cooking. Even my children are complaining. The next few weeks will be busy with the remodeling so I'm hoping time will fly by. Oh yeah, I just realized that I'm on clear liquids only on Superbowl Sunday. Not that I'm a big football fan, but it will be the theme for the day at my house. Oh well. I've made bigger sacrifices. The kids went back to school today- finally! The phone calls at work from whiney kids definately decrease when school is in session. Now when I get a call, it's usually the school nurse about my asthmatic daughter.

My oldest daughter goes back to college tomorrow. It will be a sad day for me.

Oh well, work calls.
Love to all,
Cathy
Posted 1/10/2006 4:23 AM (GMT 0)

Hey guys! It really sounds like a good new year for everyone so far.

Still nothing from Sasha? Well maybe she's just happy in morphine-land! I'm pretty sure I enjoyed it, judging from the stories I've heard. I've never gotten confused in the hospital before, but I went through about 48 hrs there at the beginning when I was a little loopy. Mom said I kept saying "now tell me the truth...this isn't really the same room I was in, now is it??" like it was some big conspiracy or something! But I was on a LOT of drugs initially. Guess that's to be expected.

Most of the time, I feel absolutely fine. Sitting down, I have no pain AT ALL! Amazing! First time in 10 yrs I could say that. The only pain I have is obviously post-op pain and it's just soreness. I'm up and about and fine. No more probs with dehydration. Nothing I've eaten has bothered me at all. I'm still tweeking the number of times I'm going to the bathroom with the lomotil, but I've never gone more than 10 times in a day even since the beginning. I have noticed that some meds I'm taking are coming out undissolved...not sure which ones yet, but that's kinda weird.

So once again, I can't thank all you enough for giving me the courage to go thru with this. It was the best decision I could have made. Oh, and as for the NG tube issue...I was very happy to have it in place when I woke up. I had no nausea at all, and it didn't bother me at all except 2 times...during my "confused" state when I accidentally pulled it half way out (but the nurse came in and put it back and it didn't bother me a bit) and then the 7th day when it suddenly shifted to the other side of my throat and gave me a gagging sensation, so I told the nurse to just go ahead and take it out. I would take that any day over having nausea and/or vomiting in that situation. And same goes for the rectal tube...had it for 3 days (I think) and couldn't even feel it, but if it had anything to do with how smoothly and pain-free I made the transition, then it was worth it, too!

Somer-I had peptic ulcers in the past, and I had similar sensations to what you're having. Good news is they gave me carafate to take, and I was cured within a couple weeks. I take nexium daily, and keep some carafate handy in case I have a flare up...no probs. And like they said, at least no prep!! yeah

Cathy-When they do your next surgery, what exactly will they do? Will you be completely done then? I don't blame you being a little hesitant to go under again, but just think of how great it will be when it's done...

Talk to you guys later.

Posted 1/10/2006 4:05 PM (GMT 0)
Lesa- I have a temporary ileostomy that was put in during the second surgery due to the herniation and perforation of my anastamosis.  I think it was Emma who woke up and saw a hollister bracelet on her arm and freaked thinking she had an ostomy.  Well I woke up with the same hollister ID bracelet and an ileostomy, much to my surprise.  I don't remember anything from before the second surgery, but my husband knew when they took me back to surgery that they'd have to do the ileostomy.  It did save my life, because I had one foot in the grave and the other on a banana peel by the time they figured out what was wrong.

My surgeon wanted to wait an extra month before the ileostomy reversal because it took so long for my blood studies to start moving back towards normal.  So, in answer to your question, they will pull my stoma back through my abdominal wall into my abdomen and reconnect it to the rectum.  The hole will close via secondary intention, or from the inside out, due to the high risk of infection.  It's supposed to take 2 hours in surgery-LOL, and be a much easier surgery than the first or second in my case.  Hospital stay is usually 3-5 days, but  my surgeon kicks 'em out fast.  In my case, that tended to bite her and me in the as*.  I am anxiously looking forward to putting all of this behind me.  It's been four months since my first surgery and I've got a little less than a month to go, not that I'm counting.

I'm home today, we're adding crown molding in our house and my oldest is off to school again, so finally, I get a day off.  I can't leave so I'll have to rest. Boo hoo.

I hope everyone has a great day.

Cathy

Posted 1/10/2006 8:42 PM (GMT 0)

Emma, have fun in Vegas, sounds like SOOOOO much fun!

Lesa, I'm glad you are feeling better.  I think I would have had better luck w/ the NG tube if they had inserted while I was sedated instead of wide awake, sitting in front of a mirror, watching myself.  It was horrid. sad

Cathy, I really do hope that this surgery is much much better than the first, or second.  You've been a trooper, I tell ya.  I was the one that woke up w/ the Hollister bracelet on.  I guess I was sort of prepared for the worst case scenario, but thankfully, everything went according to plan.

Cathy, my husband just started painting and putting up crown moulding in our living room also.  Is it just me or does your house look like a tornado touched down inside it?  I guess you have to make a mess first, then a masterpiece.  Who knows..

Well, my GI appt is tomorrow morning.  Not looking forward to seeing them again, but hopefully it's nothing short of a little GERD.  confused

~Somer

Posted 1/11/2006 12:31 AM (GMT 0)
Somer- sorry about the hollister thing, I knew it was one of the nurses. My house does look like a tornado hit. We don't start painting until Monday. My daughter is allergic to latex paint so we had to wait til she left to go back to school. We had to hire out the work though, my husband doesn't like to get his hands dirty.

I sure hope that they figure you out tomorrow. GERD is no fun. Too many theories associated, too much acid or not enough acid, go figure. Oh, what the hel* were they thinking of putting in an NG tube in in front of a mirror. That would freak anyone out. When my son was 8 months old, he had a feeding tube that he kept pulling out. Everytime, I'd have to put it back in. I finally decided that he'd eat when he got hungry enough. It took almost 3 days, but then he ate!!!!!

I hope Sasha is doing well. Lesa- I hope you continue to do well.

Hi to everyone else.

Cathy
Posted 1/11/2006 1:40 AM (GMT 0)

Cathy-Wow...you're my new hero for just living thru all this!

And Somer, I do believe I would have to smack the person that thought watching the NG tube was a good idea... I hope they get you straight tomorrow, and that it's a simple thing for once.

And I have a question for all you experts: I've been having mostly liquid, not formed at all bowel movements 8-10 times/day since the surgery. The doc said for me to shoot for between 3-5, and to use the Lomotil to try and achieve that. I've been tracking everything on my eat/poop/med sheet since I d/c'd, and taking the Lomotil 4 times/day. I've been feeling great, eating getting back to normal, minimal pain. Then yesterday, I started having an increase in what I assume to be post-op pain...certainly nothing like it was before the surgery. Then this morning, I had a large liquid bm at 8, and then at 11, I felt like I needed to go, but at first nothing came out. Then, when it finally did, it was just 3 small rock-hard stools with no liquid at all. I have had no bm's at all since, and my pain is continuing to increase. Now, give it to me straight: is something bad around the corner? I'm starting to get a little nervous...

Posted 1/11/2006 4:26 PM (GMT 0)
Lesa- try stopping the lomotil and drink an extra glass of water or two. My doctor gave me lomotil also, but I've never taken it. I eat naturally thicker foods like pastas, breads, potatos, rice, oatmeal, crackers, peanut butter, bananas, etc. Also you only drink enough to prevent dehydration. Eventually, you'll know what sets well with you and what doesn't. Like, I know that lettuce, peas, corn, carrots, broccoli, beans (especially), and brussel sprouts aren't very friendly to me. Some of those things just cause too much gas, some come out looking the same way they went in, some look worse. If I have too watery stool, then I decrease the amount of fluids I drink, and increase the bulkers. I love french fries, and I always have thick stool after eating them-yeah. Give it time, pay attention to your body, experiment, but don't obcess about it.

I think that I have it all figured out by now-LOL, but my little world is going to change again in Feb. and then I get to start all over again too. Don't feel like you're alone in all this. We've all been there.

Hope everything comes out OK.
Cathy
Posted 1/11/2006 5:50 PM (GMT 0)

Cathy, I wish my husband was a little like yours.  He is always wanting to fix something or paint something or build something.  It gets sort of annoying.  I think our master bath has been turned upside down for 2 years now.  I don't even use it. 

Lesa, I remember a week or so after surgery I got these sharp pains on my rt side.  My surgeon told me that it's normal, just the small intestine "moving around".  I would stop the Lomotil too, I never had to use it.  The most I went per day after surgery was 5-7.  Now thankfully, I'm down to 2-3. 

Ok, so I saw GI today.  They changed me to Nexium bid and scheduled me for an EGD in February.  They said they will do biopsies to make sure the H. pylori is gone and check for blockages b/c I'm having early satiety (feeling full after eating a very small amount). I guess it really wasn't too bad after all. 

~Somer

Posted 1/11/2006 6:34 PM (GMT 0)
Somer- you know what they say about the grass is always greener...
I'm glad that the GI is not blowing you off, we all need to be especially careful of all the GI track that we have left. There's only so much that we can do without. Hopefully the Nexium does the trick.

Cathy
Posted 1/12/2006 1:47 AM (GMT 0)
Hello, I think I posted here once before, but anyway,here I am again. I am a 26 yr old nurse from Destin, Florida diagnosed with colonic inertia, stemming from my history of anorexia/laxative abuse for years. My weight got up to 130, I am 5'10", but due to this constipation prob I have had for 3 yrs, am now 108 pds and unable to move bowels at all without a high volume enema. Anyway,I had 2 opinions from 2 different gasto docs and every test imaginable, the last one being the transit study, which I failed miserably. Anyway, the verdict is surgery. I will go to U.A.B.( University ay Birmingham) hospital Jan.30th to meet the surgeon- his name is Ernesto Drelichman, specializes in laproscopic colon surgery. I will then have more info on when, how,etc. I am mortified. This sounds vain, but am soo scared of having scars. I have a body image issue as it is, and am scared as to what will happen to me. I have all the posts and feel that I have found a place for support and info. I had an ng tube in the past for anorexia treatment and am terrified of them!! I would have to be sedated to get that thing even near me. I cannot eat much right now, because it just sits inside and makes me bloated, in pain, and feel like hell. I am also a full time nurse, I love my job and am very active. How long can I anticipate being off work?? I cannot imagine sitting on my butt for 6 weeks. My husband is active duty airforce, and we have no kids, just a dog. I am scared and need any info you all can give me. Also- my g.i. doc told me that my current weight may be an issue, that I may not be able to lose much more, and the surgery usually results in wt loss. Is that true? HELP!! confused

Melissa

Posted 1/12/2006 3:17 AM (GMT 0)

Hi Melissa. I'm the one who just went thru the surgery. I can completely relate to your hesitancy and predicament. I'm through the acute phase and in the recovery, but I'm still not home free. Right now I'm a little nervous because I may have an obstruction from scar tissue on the inside or adhesions causing strictures on the outside. I've completely stopped having bowel movements very suddenly, am having burning/searing pain, and pretty intense nausea. If it's the same tomorrow pm I've gotta go have an xray to see what's up. But if I can just get healed from this and have it like it was last Fri thru this Mon, it will have all been worth it. I'm gonna have a heck of a scar from my open procedure, but if you have a lap you'll hardly be able to see the incisions he'll make. You may have a problem with the wt though...I've already lost about 15 lbs, and I think most of the others had similar losses. Sounds like you don't have much room to play with.

This is a great group...I felt much better about the surgery once I heard from all the people who had been thru it before...

Posted 1/12/2006 3:51 AM (GMT 0)

thanks for your reply, it is so nice to know I am not alone! How long do you think I will be off work? Are you able to eat solid food? I don't know how soon after the evaluation on Jan.30th I will get surgery. My hubby wants me to get it done asap, but I am scared!I hope you are okay tomorrow, take care,

Melissa

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