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Total Colectomy Part 9

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Posted 2/6/2006 2:24 AM (GMT 0)
THanks Emma- good advice but difficult to acheive. I'm packed. We have to be at the hospital at 5:30am. The 1st surgery was Wed. afternoon, I figured we'd better do something different this time. So, first thing Monday morning it is. My surgery is scheduled for 7:30am. Should last 2 hours, they say. I hope they do a better job at pain management this time. I did my best to stay busy today. It's hard to keep your mind off of what is going on. I will try to have Tiff post for me so you guys know what's going on. Thanks again for your support, it helps tremendously.
Love to all,
Cathy
Posted 2/7/2006 10:40 PM (GMT 0)

Cathy - you are in my thoughts and prayers.  I am just sick with worry... how are things doing.  Hopefully someone can check in and just let know that everything went well!

Hugs and prayers,

Emma

Posted 2/8/2006 9:47 PM (GMT 0)
tongue  Hey guys, haven't had time to post in awhile. 

Cathy, good luck!  I hope everything goes well for you, you've been through so much!

Emma, the nasty C word, that's terrible!  I guess a little backed up is better than completely packed full of poop.  Which we all know sucks! 

Chris, you are probably right in the middle of your prep by now- good luck. I'll be thinking about you and Cathy!

Well, as for me, I had my EGD yesterday.  You know, being on the receiving end of healthcare is an eye-opening experience.  I was stuck twice for my IV- in spite of the garden hoses I have for veins. Now I have a HUGE hematoma on my wrist.  Looks very nice!  I spent 20 minutes listening to the nurse (who had to be 70 years old) explain to me what a pulse ox is and why they do it.  I just sat there and listened!  I must say though, the Cetacaine spray was the worst part (tastes and smells like rotten bananas).  Doc says I was red and irritated throughout the upper GI tract, she took some biopsies, now it's just wait and see.

Hopefully, everyone else continues to do well. 

~Somer

Posted 2/12/2006 11:01 PM (GMT 0)
Hi guys- I'm home!!! I DON'T CARE IF i SEE ANOTHER BAG FOR THE REST OF MY LIFE!!!! The initial pain was controlled by Fentinil Patches, then I started breaking through the patched with the other patches. So, they started with toradol or additional Fentinil via IM. I remember both of them asking about the Morphine, both of which we denined. They apparently felt like I was drugged or OD'd after so much medicine so they gave me more- Narcan and/or Addrenalin. Well, I did wake me up and start me barfing and barfing. I really wanted to die.

Thanks God that I'm home and safe now, I have some serious cramping going on in there, not too much diarrhea though.

Love to ya'll
Cathy
Posted 2/13/2006 12:46 AM (GMT 0)
Congratulations, Cathy! I'm glad to hear you're home and done with it. Any pain? Do you have to have anything else done? I can imagine you're quite relieved....

Posted 2/13/2006 9:06 PM (GMT 0)

Well Hey Everyone,

I just got back out of the hospital again last Friday. I started vomiting on the 26 and doubled over in pain. My husband had to take me to the hospital, I was in the ER until 10:00 that night.Finally they had me admitted and ran some more tests. I ended up having a small bowel obstruction with web liked adhesions. My entire small bowel was in a ball with the web-liked adhesions all over it. I didn't have surgery until Jan 31st. This time they put the ng tube in during the surgery. I also had to have 2 units of blood due to my hemoglobin levels. I was released from the hospital on Friday Feb.10 th. I am still very weak and oh yeah have two wounds from the surgey my insision got infected, I am on Home Health Care now until the infection gets better. I have to go back to the doctors office next week. So that is where I have been.

Lesa- It is good that everything worked out for you. Are you feeling like your normal self again?

Cathy- so sorry I wasn't here to cheer you on, I hope and pray everything is back to the way you want it. The reconnection was a success.

Chris-I hope your surgery was a success.

Nonna-Glad your surgery went well Lesa let us know how you are.

Emma-Thanks for the good advice prior to this. Now I have to wait until the wounds are healed. I just don't want a relaspse of what I just went through.

Hey to everyone else I forgot to metion.

Blessings to all :-)

Sasha

Posted 2/16/2006 1:12 AM (GMT 0)
Hello,
I'm back from the dead. I had another ileus and landed back in the hospital. My last post was really messed up. I'm sure it was the drugs. At least that's my story and I'm sticking to it. Came home at 1am in the morning allowing the last IV to run in. I'm feeling ok. I'm still not sure which end to aim at the toilet. I can't differentiate between gas and stool yet, so I'm running all the time. My belly hurts all the time. I didn't take any medicine today, afraid to upset my stomach. I'm still trying to figure all this stuff out. I did get rid of the ileostomy bag and I'm glad to be on the road to recovery.
Talk to you guys later.
Where is everyone, anyway?
Love and hugs to all.
Cathy
Posted 2/16/2006 4:18 AM (GMT 0)

Cathy-Oh my gosh... surely not again! Are you ok? What a nightmare for you...

And Sasha, too! You guys make me feel pretty darn lucky, and guilty for having ever griped about anything! I hope you're both improving...

As for me, I have my own strange development. I don't really know why this would happen, or even how, but I think I'm bleeding. A lot. But it's so much, surely if that's what it is I'd be really sick by now. The first time I noticed it, I thought I must have eaten something really red. And the next time, I thought it was just my imagination. So I made it a point to not eat anything red since
Sun. But tonite, it really looked like a whole bunch of blood.
Bright red blood. I've had almost completely watery explosive diarrhea since Sat (the first day I noticed the red, come to think of it..) Hmm. But I can't imagine what would be causing it. Anybody have any ideas? It's probably just something silly that I'm not thinking of. I feel bad for even bringing it up with the suffering Cathy and Sasha have had!

Posted 2/16/2006 4:12 PM (GMT 0)

Cathy - goodness, just please take it easy.  You have one of those bodies (like me) which is just prone to developing an ileus and it is probably something that we will have to be concerned about anytime we have major surgery.  Take care though, and give yourself time to heal. You are alot like me and I am guessing you tend to push yourself too hard... stick to the clear and full liquid diet!

Lesa - SEE A DOCTOR immediately... no waiting! Just see someone and get it over with... blood can be nothing but could also be something more serious!  PLEASE do this!

I am just swamped with school, so sorry I am not posting much... but I read every single one.

Chris - how you doing?

Hugs,

Emma

Posted 2/16/2006 4:31 PM (GMT 0)

Hi Lesa,

Just a quick thought on your bleeding -- Emma is right -- you should call and/or see your surgeon right away.  I can't remember your surgery date, but something similar happened to me about 4-6 weeks post-op.  I was filling the toilet with blood -- somewhat similar to what happens in the hospital when you first start to pass the blood from surgery.  Anyway, I thought it was weird to bleed again that long after surgery, and so did my mom (who is a nurse).  But there was no pain or discomfort associated with it.  I watched it for a few days and then when I went for my 6-week checkup, there was nothing visibly wrong.  Then I started to have pain and burning (to the point where it was throbbing and hurt to sit down!) -- turns out it was a stupid anal fissure.  When they are bad, they really suck.  So I think the bleeding originally was the fissure starting -- since they are worse than hemorrhoids and an open wound of sorts, that's where the bleeding is from.  I totally thought I was bleeding internally until the surgeon told me it was a fissure!  You could have a totally different problem, but it sounds similar to my fissure woes.  If you can start treating it as early as possible, you might prevent yourself from hitting the severe pain stage or needing another procedure.  Let me know what you find out -- I can email you the different meds/methods we tried to get mine to heal. 

Hope that helps...

Avery

Posted 2/16/2006 9:05 PM (GMT 0)
Everthing I wanted to know about life...I learned when I still had a colon. :)

Hi all,

I underwent surgery on the 9th of Feb and everything went pretty well with a few complications.  Coming out of recovery was a bit of an adventure (or so they tell me-I really don't remember any of it).  It seems that the cathether was not draining as it should and with the pressure of the urine backing up in my bladder, I was in extreme pain (that part I DO remember).  They tell me they that I kept trying to get out of bed-telling them that I had to go pee and that I was going NOW by God! 

Once they got that under control, they had a problem with keeping my blood pressure/pulse rate under control.  Seems my bp wanted to hover in the 190/130 range and they couldn't get it under contol.  They called in my PCP, who is an internest, who put me on some IV bp meds and got it under control. 

The day after surgery was pretty uneventful, other than I ran a low grade fever the whole time I was in the hospital and kept having hot flashes-sweating, flushing, the whole nine yards.  Surgeon told me, "I must have missed and removed your ovaries instead."  har har, everybodies a comedian.

Pain was kept under control with a demerol pump and everything went really well with not a lot of pain for the next few days.  On Monday, they pulled me off of the pump and started giving me oral Tylox for the pain.  By Tuesday, I was vomiting uncontrollably and had a really bad day.  The surgeon decided that it was the pain medication and changed it to Vicoden, which I have never had any problems with.  By Wednesday morning I was able to eat again and the nausea was gone and they released me Wednesday afternoon and am doing well.

Thanks for all of your well wishes and thoughts while I was in the hospital!

I'm so sorry to hear that some of you are having so many problems lately!  You are in my thoughts and prayers and I hope you all make a speedy recovery.  While I can't know how you are feeling, I know that I was telling myself on Tuesday "This is the stupedist thing you have ever done, maybe they'll just come shoot me soon" and I wasn't going through near what you guys seem to be going through.

On a positive note:  Today is my 35th birthday!  When I returned home from the hospital yesterday I found my b-day present in my living room, a brand new la-z-boy recliner!  What timing!  I told my wife it was the best bday present I'd ever had and proved it by sleeping in it last night. :)

@Cathy:  Quote "I can't differentiate between gas and stool yet, so I'm running all the time."  OMG, that actually made me laugh!  I have now found out the hard way *twice* that post-surgery there is no such thing as simply "passing gas", at least in my case.  How you doing girl?  I hope better! 

I will be checking in on you guys to see how you are doing from time to time, I really hope that you are feeling better.

Chris

Post Edited (kntkyboy71) : 2/16/2006 2:09:00 PM (GMT-7)

Posted 2/20/2006 1:54 PM (GMT 0)
I wish all the best to those who've undergone treatment in the last few weeks.

I had a total colectomy due to UColitis ~year ago at age 18. I was left with an ileal stoma. My surgeon was unwilling to opertate on me for another year due to the fact that my rectem never fully healed.

I never managed to accept having the stoma.

Last december I had the remaining rectem removed and an ileal pouch formed along with a temporary stoma. Last week (16th Feb) I had the ileum re-connected to the pouch. I was lucky to find the operation easy in terms of pain management (especially compared to the previous two operations).

I'm finding myself frequenting the bathroom painfully often. I was advised to use the low residue diet, something I've read often in this forum, but I was wondering also about possible medication to help the situation.

Uni starts in about two weeks (here in Australia), and whilst I realise its still very much the early days, I would like all the help I can get to be able to attend classes ASAP.

I am thankful of all those people whose posts I've been reading, in this particular thread amongst others, and would very much appreciate any advice.

Joseph
Posted 2/20/2006 4:22 PM (GMT 0)

Joseph,

Welcome to the forum. I can't imagine there being much you'd want to know that you couldn't find here somewhere...

My surgeon prescribed me Lomotil (diphenoxylate hydrochloride and atropine sulfate tablets, 2.5 mg/.025 mg) which is an anti-diarrheal. He told me to take it as often as I needed to regulate myself, up to 2 pills 4 x day (which is apparently more than the manufacturer recommends per the pharmacist, but not dangerous or anything...). As time goes by, it should slow and stabilize anyway, but the meds have certainly helped. The most I ever took was 1 pill 4 x day, and I take 3 now. There are also certain foods which will have thickening effects, but I couldn't ever get enough effect to be able to stop the meds. I also take bentyl which is an anti-spasmodic which helps with cramps.

Good luck with everything...

Posted 2/20/2006 7:00 PM (GMT 0)

@Lesa (or anyone else):

Quote:  "I also take bentyl which is an anti-spasmodic which helps with cramps."

I just had my colon removed 11 days ago and have been having some spasms/cramping.  I had assumed that these would go away as my body adjusted to the new routine.  Are you sayng that this is a common side effect and it may not go away on it's own?

Thanks,

Chris

PS.  First follow up went well, I actually got all of my staples/sutures removed today but 3 that are in my belly button.  Those will have to stay in another week but so far, so good!

Posted 2/20/2006 7:09 PM (GMT 0)

Chris,

My surgeon initially prescribed Levsin, which is a med similar to bentyl, but I had a lot more trouble with blurry vision with it (all these type meds can cause anti-cholinergic side effects like dry mouth, drowsiness, blurred vision, but the Levsin also caused me to have migraines.) I've taken bentyl for yrs with no problem, so I just switched back to it. Even now, if I don't take it I get some cramping...not the horribly painful kind like I had before, but a very unpleasant straining type effect when I actually go to the bathroom so I'll continue to take it for now. Maybe that will improve later...I dunno...

Posted 2/20/2006 11:59 PM (GMT 0)
I wrote this big long post the other day and it's lost in cyber space.

So, here we go again.
Welcome Joseph. I too, just had reconnect surgery. While I had the ileostomy, I was able to manage diarrhea with the foods that I ate. The surgeon gave me loperamide, but I never had to take it. The ilepstomy gave me a bit of controlled emptying, if you know what I mean. Now, I'm starting over again. Japanese food gave me diarrhea, pasta and french fries thicken things up. Is your soreness from burning diarrhea or just from frequency and wiping? The cause of your discomfort would help to know what to advise.

I find myself these days reminding myself of advice that I recall giving to others in this forum. It's time for me to notice what is getting better and not to dwell on that which is not. My discomfort is minimal, I am eating whatever, no signs of infection in my stoma hole, I had pretty formed stools twice in a row. But, I wouldn't be me if I didn't complain a little! INSOMNIA again. I am having trouble sleeping again. Weird dreams that make no sense. I credit the anesthesia for this gift. It doesn't matter what I take, nothing helps. I even took 3 Benadryl the other night.

I spent Valentine's day in the ER with an ileus again. Took 7 sticks to get an IV in, 24g in my R foot. After 1 liter was in they were able to get a 22g in my wrist. my potassium had dropped also and of course I was dehydrated. THey even tried 3 femoral sticks but kept hitting the artery. It was very romantic, I got out at 1:30am Wed. morning. But I do feel better now. I know recovery is going faster this time compared to last time, but I'm tired of being "sick."

Sasha/Chris/Joseph hang in there. This too, shall pass. I'm thinking about you all.

Hello to everyone else. Hope all are doing well.

Cathy
Posted 2/21/2006 9:58 PM (GMT 0)

Hi

My name is Phyllis and I am sure my story sounds familiar.  Constopated all my life...March 2005 admitted for what they thought was obstruction...they keep calling this constipation...that sounds so simple...Sitz marker test showed all rings present (L) upper quadrant 5 days later..also have redundant bowel.  Anomanometry was normal.  Taking Miralax BID, Zelnorm BID and also prevacid.

Am planning to go to the Cleveland Clinic in April for surgical evaluation for possible colectomy.  Has anyone gone and had surgery at the Cleveland Clinic and if so what was your opinion?  I have read all the other posts and have found it very informative..both the good and the not so good.

Thanks for any info...

Posted 2/22/2006 1:55 AM (GMT 0)

Hi Phyllis,

Quickly -- my surgeon did his residency and colorectal fellowship, etc. at the Cleveland Clinic and he is the most amazing doctor/surgeon I've ever known.  Okay, I haven't known that many, but his care has been top notch.  My surgery was a little over a year ago and I've never felt better.  I've seen the Cleveland Clinic website for colectomies, etc. and I agree -- it's very informative.  I am in Chicago, so not in Ohio...I don't know if anyone on the board is in Ohio.  I used to work in health insurance and never heard anything bad about the Cleveland Clinic.  They seem to have a great reputation. 

It's not much, but hopefully eases your mind a bit.  Ask a lot of questions -- anything that comes to mind.  Nothing is stupid and nothing is inappropriate...good luck.  There are many of us who can relate to the exhaustion of taking Miralax and Zelnorm....especially with little or no relief. 

Take care,

Avery

Posted 2/22/2006 3:14 AM (GMT 0)

Hi Avery

Thanks for replying...It is very frustrating.  I live in NY so the Cleveland Clinic is a big haul..I do have experience with their care for CA of the kidney..They saved my husbands life by doing kidney sparing surgery on both of his kidneys and he has been cancer free for 5 years..I just didn't know how their colorectal surgery dept was...

I am very frustrated with my GI doctor...it's like he has never came across this before...initially he added paxcil to my medicines as if to say it was all in my head....he thinks biofeedback is all of a sudden going to get my colon to work.  Also, which is discomforting for me is that there are times when my abdomen becomes very cold and lasts for about 20-30 minutes and then will become normal temp...I had my husband feel it as a witness... The GI doctor said he didn't know what it was but sounded scary to him...Like I said..very frustrating....did you or anyone else get this coldness?

Posted 2/22/2006 11:48 AM (GMT 0)

Hi Phyllis,

I know how it can be to get frustrated with the docs.  I liked my GI, but it still took almost 2 years to come to the surgical referral.  When she referred me, I was ready to sign on the bottom line with the surgeon and get on the road to feeling better.  He surprised me on the 1st visit with a prescription for physical therapy/biofeedback, hypnotherapy, and another sitz test.  I had all these crazy thoughts going thru my head -- taking it personally and wondering if he didn't like my GI doc or trust her or something.  In the end, I realized it's more for your benefit and their malpractice issues -- they have to be absolutely certain that this is necessary and a last resort.  And even then, they give you every disclaimer -- you could have complications, you could bleed out, your pain may not go away, it could cause problems with other organs, etc.  Believe me, we've all heard it all.  Don't take it personally -- your GI may not be familiar with this or see it very often, but at the same time, they cannot legally or ethically recommend surgery as a quick-fix.  If you're uncomfortable with your GI, you could switch....it's difficult with the surgeon being so far away in Ohio -- but maybe he/she will give you more insight when you get there.  It is a long process, and when you're living the way we do, it seems like forever.  Hang in there and be patient.  I remember having some cold once in a while on my abdomen, but never freezing.  I just assumed it was the flab from always being bloated, etc!  Nothing very extreme.  Ask the surgeon...it could be just a weird thing and not serious.

Avery

Posted 2/22/2006 12:54 PM (GMT 0)
Lesa: Thankyou for that. I'll be seeing my doctor again tommorow and want to ask for s/t else to take. I'll see what he offers, seeing as some doctors seem to be biased against some medications. I haven't had any problems with cramps.

Cathy: I've been sticking to simple foods like pasta and chips, and haven't been adventurous enough to try anything as exciting as Japanese foods. I'm never quite sure if s/t is bad for me, ot ig its just my system struggling, for example I had some m&m's the other day and they seemed to give me D.

There are different pains: a burning pain (like if you've had gastric juices out of the stoma seep onto your skin), and a pain like I've just spent the day with a pole up my bum. I've since started using a barrier cream, which helps with the burning pain.

You learn quickly not to wipe too vigorously and to dab often instead.

I didn't understand from your post you current situation. On one hand you said you've recently had reconnection done, but then you wrote that you were in the ER with an ileus (meaning a stoma?)

Quote: I'm tired of being "sick."
- s/t it feels like all you've ever been is sick. It's all very well believing that it will get better, but sometimes the reality that today will be like yesterday, and tommorow like today just hits home a bit hard. (It's sort of like that paradox: If N is a small number then N+1 is a small number. 1 is a small number. Add one to 1 often enough and you see that even 1,000,000 is a small number. So too, if the day after a day is almost the same, then all days will be the same.)

Well anyhow, all the best to everyone
Joseph

Post Edited (Joseph_1) : 2/22/2006 5:57:28 AM (GMT-7)

Posted 2/22/2006 4:59 PM (GMT 0)
My, my Joseph. I didn't see the philosophy coming. September 05, I had a total colectomy for colonic inertia and just hours after surgery my anastamosis perforated. The perforation went unnoticed, except for extreme pain to me, for 2 1/2 weeks. By then, I had been moved into intensive care because I was in complete organ failure and pretty much dying. Finally, my husband brought in yet another specialist, an intensivist, and he found an air bubble on the CT scan that was indicative of the perforation. I had surgery and was left with an ileostomy. I was in ICU for another 2 weeks and in the hospital another week after that. 6 weeks recovery at home, then I went back to work. The surgery needed extra recovery time for my bowel to heel due to outrageous blood labs that were coming back. So, finally in Feb 06, I had reconnect surgery. An ileus is pretty much possible after any abdominal surgery and the small intestines are just a little sluggish to want to work after sleeping during surgery. It usually involves profuse vomiting and dehydration.

I do have to say though, while I am sick of being sick, I do feel better today than I did yesterday and I plan to continue that pattern until I feel GREAT!

My best to you too.
Cathy
Posted 2/24/2006 5:17 AM (GMT 0)
Just had to make this quick post before bed.

Quote: "You learn quickly not to wipe too vigorously and to dab often instead."

AMEN BROTHER! Have learned that in a most profound way during the past week! I'm thinking....baby wipes!
Posted 2/24/2006 4:43 PM (GMT 0)

Cottonelle makes a good moist wipe that is flushable.  Some baby wipes aren't flushable which could lead to a big mess.

I'm feeling good, I guess.  I was up all night in the ER with my daughter, she was admitted for her asthma AGAIN.  Sometime today I have got to get a nap.

My mom went home this morning, I started driving yesterday again.  So, the road to recovery just got a little harder.  But we can do this.  I'm doing sooooo much better than I was before, and I can't tell you how glad I am to have the ileostomy gone.

I'm thinking of everyone.  I'll be checking in when I can while we're in the hospital.

Love to all,

Cathy

Posted 2/24/2006 9:18 PM (GMT 0)

Hi all!

Finding this forum was great. My surgery is scheduled for next Thursday (March 2nd.) and I am scared and excited at the same time. confused tongue

I can't wait to get rid of this "constipated state". All of your postings are very helpful!

For the first time I read about the loosing weight thing that happens after the surgery... Is is common?? Is there an average amount of weight people usually lose?? Also, why does it happen? Is it because you are able to empty out or because you just can't eat well after the surgery?

For those of you that will have the procedure before me or are in the healing process, best luck.

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