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Total Colectomy Part 10

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Posted 4/18/2006 4:42 AM (GMT 0)
Cathy:  My stomach has settled down and does not make all those noises as often.  The thing I am concerned about is my job being so stressful and today (my first day back)I though I needed to go to the bathroom, but just could not relax enough.  When I got home things moved and I went to the bathroom three times.  I am concerned that holding it all day may not be good, but I just have this thing about going to the bathroom at home.  I am hoping that I don't gain any of the weight back - I am enjoying buying new clothes, LOL.  I agree the bloating is nothing like before and I really feel good, just tire easily.

MOM 23:  The pain medications did the exact same thing to me and they kept saying let us give you this to relax you and let you rest.  Nothing worked and the entire 14 days in the hospital, I hardly slept.  I am still having trouble sleeping.  I think the weight loss is due to going so many days right after surgery with NO FOOD, then when you do start eating it is small amounts, and I can just imagine how much my colon weighed.  I was not completely cleaned out before my surgery and I told my surgeon and he said it did not matter becasue he was going to take it all out anyways.  It is just a combination of everything, but at this point I am rather enjoying the weight loss.

God bless,

Nonna

Posted 4/18/2006 4:58 AM (GMT 0)

Quick post here: but the best pain medication is Toradol. Especially if you have a sensitivity to the narcotic medications, toradol is a stronger version of ibuprofen (same category of medications) and works very well for the pain control.  I tok nothing but this medication post op, and although I have a good pain tolerance... it worked well for me! :)  At home also, I did not take any narcotic medications, I only took ibuprofen.  Something to think about!

Hugs,

Emma

Posted 4/18/2006 1:38 PM (GMT 0)

hey everyone,

I am finally home, only six days in the hospital.  I do have some questions,  has  any out there had a lot of movements in a day 20 + and does it slow down.  I had a couple of control issues in the hospital and will that always stay ? 

Posted 4/18/2006 2:19 PM (GMT 0)

Tweety, good to hear from you!  Hope everything is well.  I personally, never went that many times even right when I got home from the hospital.  I would assume it is probably normal, I think some of the other gals here did go that much.  I also had a few "control" issues at the hospital, but it did go away.  Thank goodness!

~Somer

Posted 4/18/2006 9:40 PM (GMT 0)
Emma, Thanks for the info on the Toradol.  I do remember having that a few months ago when I hurt my back falling off my step in aerobics class (yes, I'm also a klutz) yeah and it worked well with no side effects.  I will definately ask for that . The side effects from the narcotics are almost worse that other things.  I got my 3rd opinion today, and he said that if I was his wife this surgery is what he would recommend because I basically have a non functioning colon.  He also told me that in his experience the success rate is about 95%, so I feel better knowing all of this.   I'm scheduled for 10:30 this Monday the 24th.

     Tweety,  I'm so glad you're home.  How did everything go? I have a million questions for you, but i'm not sure if you feel well enough to answer.  I have to ask, how long did you end up having the NG tube?   

   Cathy, wow 27 pounds!  Was that because of your complications ?   Did ANY of you have your Dr. tell you that the colonic inertia could start moving up into the small intestine?  I read that somewhere and didnt like the sound of that!!!!  thanks for everything !

 

Posted 4/19/2006 4:50 PM (GMT 0)

mom23-  I did a 3 day prep to make sure I was cleaned out.  Then after surgery, a couple of days without real food.  By the time that I could start eating, my complications set in.  I was on TPN for about 2 weeks which means I wasn't eating, then I had the second surgery and took another week to really wake up and start on clear liquids.  I didn't really start eating until I went home at almost 6 weeks from the first surgery.  Then I had to start small and progress back to normal.  That was Oct/06 and I have gained about 10 lbs back since, keeping in mind I also had a third surgery during that time.  Honestly, I needed to lose some weight.  It was a heck of a way to lose it though.  Not something that I recommend.

I have not heard of colonic inertia moving upwards.  I seem to be working just fine, I'd like to keep it that way.

Cathy

Posted 4/19/2006 5:32 PM (GMT 0)
Hey All- We went to the beach last week on Friday. I got extremely burnt and now I am peeling so bad. I wasn't able to do anything for Easter. I couldn't hardly move. But other than that, evrything is working fine. I am down now to about twice a day BM's. I can eat pretty much whatever I want. I still need to drink more water and am trying to do that. But being a Southern girl I tend to drink more sweet tea instead.

Nonna- It is so good hearing from you. I am glad you are doing much better. I had my share of the hospital too.

Mom23- I was one of those that developed a small bowl obstruction. I also had fast growing adhesions too.That was why I had to have my second surgery. But honestly I wouldn't change any of it for the world. I have never felt better, now being able to go at least twice aday. I will pray for you to have peace of mind before your surgery.

Emma, Somer, and Kathy- How are you guys doing? I have one question that maybe one of you will be able to answer. Why am I losing so much hair? Is it because of all the drugs I was on in the hospital? I cut some of the dead ends off, but I seem to lose more of it in the shower. Is this something I should be concerned about?
Please help me figure out what I should do. If anything?????

Blessings to you all,
Sasha :-)
Posted 4/19/2006 5:41 PM (GMT 0)
Hey Tweety- Glad you are home. How are you feeling other wise? The bathroom thing will slow down, well mine did. Just make sure you keep yourself hydrated. You have to be careful afterwards to avoid getting a small bowl obstruction. How long did you have the ng tube? Remember to take it easy.

Blessings,
Sasha
Posted 4/19/2006 6:17 PM (GMT 0)
Sasha- Hair falls out due to malnutrition and with the complications of the small bowel obstruction/2nd surgery, I'm sure you had a bit of malnutrition, like I did. I'm just starting to grow new hair. I thought I would need a wig because I lost so much hair. I even plugged the shower drain and had to call the plumber. My complications lasted longer than yours did, so hopefully you hair won't fall out as much as mine did. Remember that this too shall pass!

Cathy
Posted 4/20/2006 1:54 PM (GMT 0)
Thanks Kathy, That is good to know. I thought I had some sort of weird thing happening to me. MY hair is longer and I thought maybe I was losing so much of it because of that reason. How long should I wait to color my hair? I heard about 6 months is this true? eyes

Blessings,
Sasha :-)
Posted 4/20/2006 7:37 PM (GMT 0)
Hi everyone,  I guess my prep will be 20 Visicol on Sat eve. and then 20 more on Sunday morning with possible mag citrate in the afternoon if i'm not running clear.  Does that sound like a lot to you , or is that about right??  I was going to do the Miralax prep, but he said that was better for colonsosopies.  I just cant handle the Golightly...cant even smell it and I gag! 

     I'm also getting extremely nervous.  Did any of you start to second guess yourself. I keep thinking "this is either going to be the BEST thing I have ever done, or the biggest mistake of my life" .  But I have had 3 separate opinions from very good Doctors.  Anyways, I wondered if I was alone in thinking this way.   TWEETY, if you're out there, I would love to hear from you. How are you doing???  Thanks!

Posted 4/20/2006 10:28 PM (GMT 0)
Mom23- If you feel like you can live the rest of your life like the way you are today then don't go through with it. You've heard my story of woe, and I still recommend the surgery, and I would do it again, even with everything I went through. It is normal to be nervous. I felt like if I had done everything there was to do and this is what was left, then I had to do it. I couldn't live like that anymore!!!!!!!!

Sasha- I wouldn't color your hair until it stops falling out. I went and cut all my hair off because I was plugging the shower (it was my first driving experience after surgery). I'm just now growing new hair and not losing it anymore. I'm glad you're doing better!

Somer, Emma, Nonna, et al. Hello, I hope you all are doing okay.

Cathy
Posted 4/21/2006 3:16 AM (GMT 0)

Hello Sasha! scool

I, too, had long, beautiful, curly hair and after having a total of 23 1/2 hours of anthesia and three surgeries including subtotal colostomy, emergency surgery the second day for internal bleeding (blood clots around my right kidney) and my reversal ileostomy in December, 2005, I began losing my hair, which scared me at first not just the hair in the drain but the handful of hair that came out while blow drying my hair.  My husband was more upset than me because I said it could have been one of two things my thyroid or the anthesia.  So the woman that cuts my husband's hair suggested "Nioxin Cleanser - Medicated Shampoo and Nioxin Scalp Therapy Conditioner" costs $18.00 for both (5.1 Fluid Ounces) Bottles.  She deals with alot of women who had cancer and they were losing their hair due to the chemo.  I have been using it for the past five weeks and we both have seen a difference in my hair loss.  It is minimal now.  If your hair dresser could pick the above up for you at the Beauty Supply Store for you at his/her cost.  Give it a try what do you have to lose.  I am glad I tried it, it worked for me.

Take Care!  Angel tongue

Posted 4/21/2006 3:35 AM (GMT 0)

Hi! Mom

As far as your prep is concerned, I had to drink a gallon of the Cherry flavored Golightly as well.  It was horrible at first, but I filled shot glasses of the Golightly and drank them down as fast as I could.  Just the thought of drinking that stuff made me sick to my stomach, but I had to do it to have my Subtotal Colostomy on 09/19/05.  A year before my surgery, I went to a Gasterologist and told me since I had chronic constipation for 20 years just take Miralax.  No need for surgery, I lived with it this long may as well as live with it for the rest of my life.  So after a year, I was recommended an excellent colectal? surgeon.  He gave me various tests such as a colonscopy, sitz markers test, and defacography test.  I failed the sitz markers and the defac test.  All I heard the surgeon say is that you will never have to take a laxative (failed to work) or an enema anymore.  Probably have BMs 7 to 8 times a day with a year or so recovery period.  Long story short, I took the surgery not really knowing that I would have a ileostomy (a bag).  I didn't realize I had it at first because I was on a morphine drip for several days along with the NG tube for four days after the surgery and seven days in the hospital total.  Looking back with the obstacles that I have been facing since my reversal ileostomy such as a sore and irriated bum, lose of weight (20 lbs), hair loss, feeling fatigue, and BM's 7 to 8 times a day especially since my surgery was 4 months ago.  I have not returned to work and probably won't for at least a year.  BUT to answer your question "am I sorry for having the surgery?" not at all.  It has been 7 months since I last gave myself an enema, which took almost two hours and sometimes I would not even have a BM.  Remember:  Everybody's different and you will have a different recovery period too.  Between now and then, sit down weigh you options, disadvantages and advantages of having the surgery.  The main thing is that you trust the person doing your surgery and value his/her opinion as well.  Remember:  No one could make the decision for you to have the surgery, only you and only you can make that decision.  Best of luck on Monday, April 24, 2006. 

Angel

Posted 4/21/2006 3:36 PM (GMT 0)
Hi everyone, Zoe here.

I have a lot of catching up to do.  I'm happy to see some of the old timers are still posting.

I'm doing well, I have another dilitation in June.  Hopefully that will be the last one.

Zoe :-)

Posted 4/21/2006 4:11 PM (GMT 0)
Zoe- we've missed you. How have you been?

Cathy
Posted 4/21/2006 5:36 PM (GMT 0)
I've been good.  I started running a little - I still mostly walk.  I'm back up to my post surgery weight (95 lbs) and feel pretty good.  I still have to watch what I eat because of the scar tissue but I've gotten used to it.  I finally got my hair cut off and it is growing back nicely.  I never realized I was so gray.

There are so many new people.  Welcome!!!.  I had my surgery June 24, 2005 and even with the problems I had, I have not once regretted it.  It's amazing to be able to go to the bathroom every day without laxatives - which didn't work anyway at the end.

Talk soon,

Zoe

Posted 4/21/2006 6:31 PM (GMT 0)
Angel,  I want to make sure I understand you correctly.  Was it just a misunderstanding  from your Dr. about the bag? Did you think you were getting a subtotal colectomy and he was thinking ileostomy all along?  I think I'm loosing brain cells from lack of food here.  And the hair loss was a result of that much anesthesia? 

    Zoe, Are you having the dilitations because of small bowel obstructions?  Did you have the subtotal colectomy? Thanks

 

Posted 4/21/2006 7:17 PM (GMT 0)

I need the dilitations because of scar tissue developing.  At first they thought it was an obstruction and they told me I might need more surgery.  I was in the hospital twice in November.  They finally did a colonoscopy and found a bunch of scar tissue someplace.  They told me where it was but I was too doped up so I don't really remember.  They even showed me some pictures, those went in one eye and out the other.  I can joke about it now, but I was one sick puppy for awhile. 

Glad to be back on the forum,   Zoe

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