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Total Colectomy Part 10

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Posted 4/11/2006 2:00 PM (GMT 0)
Hi Everyone,

How are you all doing? I am doing fine, except for a sore butt. I must of eaten something to harsh for my stomache. Other than that I am doing fine.

Mom23- How are you doing? Have you found out when your surgery is?

Emma, Cathy, Somer, everyone else- How is it going? Are you all doing fine now.

Have a great Easter!!
Blessings,
Sasha
Posted 4/11/2006 4:10 PM (GMT 0)
Hi Sasha, I actually meet with the surgeon tomorrow morning. I have so many questions for him. My husband will be going with me so i can remember everything he has to say. Needless to say im a little nervous. I will let you know more tomorrow. I hope Tweety's surgery went well yesterday. Happy Easter to you too!!
Posted 4/11/2006 5:06 PM (GMT 0)

Hi everyone!

Sasha-  I'm doing well.  Work has been very busy, tiz the season.  I have no real complaints to speak of.  I do have an area of adhesions that is bothering me underneath the incision scar and stoma scar.  It pulls every now and then causing a strange kind of pain.  I can live with that.  I do find it weird still to actually go everyday after not for so long.  I never knew what it was to be normal.  Now I find it odd if my meal doesn't stimulate the need to evacuate.

We drove to Las Vegas this past Saturday.  It was a beautiful day for a drive and my kids behaved!?!?!?!  It was my first long journey in a car since my first surgery last Sept.  (I've come a long way since then.)  I did fine.  I could "hold it" when I needed to.

Tweety- of course we are all praying for a speedy recovery and hoping that all went well yesterday.

Mom23-  hang in there.  Ask, listen, write things down.  Time will fly once a date is set, then the mystery is over and you can plan.

Chris, Somer, Emma- I miss you guys!

Cathy

Posted 4/11/2006 5:16 PM (GMT 0)
CATHY W

This is Tammy. I am glad your doing well. I have a question for you. My surgery was 1/25 and my recovery has been uneventful. These last two days have been different though. My bowel movements seem a little less often. My tummy seems a little swollen and it is itching so bad that I took benadryl thinking I must be allergic to something. The itching is driving me crazy and the swollen feeling is almost uncomfortable. Any ideas? Thanks. Tammy

Posted 4/11/2006 9:32 PM (GMT 0)
Tammy- try drinking some extra fluids. Is it just your stomach that itches, because that would be odd. The fluids might give you diarrhea and clean you out, otherwise you might need a ct scan to make sure there is no small bowel obstruction. A telephone call to your surgeon or GI doc might be warranted.
Good luck, and let me know.
Cathy
Posted 4/11/2006 9:57 PM (GMT 0)
Hey Cathy- I took a trip last month with my kids. Thank God for movies in the car. I thought my oldest was going to throw his youngest brother from the car. It wasn't bad on the way back though because they were all tired out. I didn't have to worry about if I would make it to the bathroom. That part was good.

Mom23- I wrote all my questions down ahead of time. I seem to forget when I go to the doctor,what I want to say. My husband doesn't ask a lot of questions, and I do. I hope your doctor answers all the questions you have. Don't leave until you feel like everything you want answered is answered.
Good luck tomorrow.

Tweety- I hope you are having fun in La La Land.
Let us know how you are.

Blessings,
Sasha
Posted 4/11/2006 10:20 PM (GMT 0)
Sasha- you know La La Land was a good place to be for a few days!!!
Cathy
Posted 4/12/2006 5:01 PM (GMT 0)
To all
I've been reading all your posts and it's really helping me. My surgery is on Tuesday April 18th. Right now I am going through my 3rd Sitz marker study and feel awful since I can't have any laxitives. I was vomiting everything yesturday and it feels like a rock in my stomach and in my but.
I am dreading Monday when I have to do the prep GoLytely I think is what it's called anyway my Easter dinner will be Yellow Jello while my family has Prime Rib!!!!!!!!
All you posts have helped me to get the things I will need after surgery so I want to thank you all.
Wish me luck!
I'll let you know how it goes
Scared a little!!
Csway
Posted 4/13/2006 12:29 PM (GMT 0)

Sasha, hope you are well.  Everything seems good for me.  No complaints really.

Tammy, how are things?  Still not feeling so good?  You should probably contact your doc just in case.  I hope everything is ok. 

Cathy, I've been so busy.  I still try to read through the posts even though I may not have time to reply.  I've never been to Vegas.  I'm not really a gambler, but would love to see the shows and enjoy the nice HOT weather.  I really think I could live in the desert.  I really am glad you are on the road to your recovery.  I, too, have some things that I have to "live with" and I am OK with that-  it beats how I was living before!

Tweety, I hope your surgery went well and will be posting soon to let us know.

Cs, I remember those days of living through a bland, jello diet while everyone else is eating it up!  Just keep in mind, eventually, you will feel better.  :-)

Best wishes---  Somer

Posted 4/13/2006 5:47 PM (GMT 0)
Somer, it's nice to hear from you. Life does get busy sometimes. We act like being sick is an on and off switch, but really there are varying stages. I think that I forget that sometimes. I know I overdid it when I came back to work, but their perception was that I was not sick anymore so pile it on. I am still real tired and my body aches when I get up in the morning from being up on my feet all day the day before, and from where I can see, there is no end in sight. To make matters worse, my husband and I are in a lovers spat. It takes so much more energy to be mad, and it's not always worth it.

Cs- hang in there. This too, shall pass. Easter dinner isn't all it's cut out to be. Think of all the fat and calories you're missing. I was prepping on Superbowl Sunday, just as bad. Once, I jumped up to run throw up, just then a good play happened and everyone yelled and screamed. I took it rather personal. You'll be fine and it will be done before you know it.

Tammy- hope you're feeling better.

Hello to everyone else.

Cathy
Posted 4/14/2006 1:20 AM (GMT 0)
Hi Everyone,   Well I guess this is it!   I met with the specialist today and I was very impressed.  If you have a moment to google him you will be amazed!!! His name is Dr. Arnold Wald, and he is the leading expert in colonic dismotility. He told me that there is really no turning back at this point and it will never get better, only worse. This is not really considered constipation but a disease of the colon that cant ever be repaired.  I had my preop physical... they called today and said that I could either have the surgery this Monday the 17th, or the 24th, so I opted for the 24th.  I just feel numb, like this isnt really happening.

    Can any of you tell me if you regret having your surgery?  Honestly has it made your life a 1000 times better??  I really need to hear from you all.  Thanks

 

Posted 4/14/2006 3:33 PM (GMT 0)

Hello Everyone, My name is Christine and I am new to this message board. I have actually been reading these posts for over a year as I have been seeing gastroenterologists and now surgeons for colonic inertia. I have recently changed surgeons because the one I was seeing before would only perform an open colectomy and I was interested in finding one who specialized in laparoscopic colectomy. My new surgeon is wonderful and my surgery is scheduled for June 26th. Like many of you, I have spent YEARS dealing with chronic constipation and have tried every medication and combination of medications known to man to NO avail. I live on ridiculous amounts of laxatives and mag. citrate and enemas and straight starvation at certain points. I am EXTREMELY nervous to go through this as I have NEVER had surgery before. I am 27 years old 5'3" and 115bs. I am concerned about weight loss and the ability to retain the proper nutrients but I am REALLY looking forward to the end result of leading a somewhat normal life. Q--What is the average weight loss for people my size???

Another Question-- What are the HONEST chances I could end up with a bag? I am not clear on what are the causes of needing one....

Additionally, how many people here were told that their surgery could be performed laparoscopically and ended up having an open procedure?

Anyhow, thanks in advance for any help you can offer me. I feel like I have spent a ridiculous amount of time on the internet researching this and STILL have so many questions.

Thanks--Christine ([email protected])

Posted 4/14/2006 4:12 PM (GMT 0)
Christine, welcome!  I am also 27 years old.  I am 5'10" and weigh 136 lbs.  I only lost about 5 or 6 lbs total.  My surgeon told me there was really no reason why anyone would loose a ridiculous amount of weight.  I had an open procedure.  My surgeon gave me the option of open vs. lap but I chose open.  He gave me all of the risks and benefits, and to me, the benefits of a lap procedure weren't that impressive.

Mom, I am TOTALLY GLAD that I had this done.  I have honestly, never felt better in my life.  yeah

Cathy, yeah, sometimes fighting and being mad just makes everything worse.  I know what you mean. 

Best wishes,

Somer

Posted 4/14/2006 4:36 PM (GMT 0)
Somer, Thanks, I needed to hear that today!! My head is just spinning with negative thoughts right now, and wondering if I'm doing the right thing. I think that is just normal though. Christine, welcome. I know exactly how you feel. I also live on laxatives that just aren't working anymore at all. My surgery is scheduled for Monday the 24th and I will be having an open procedure. My surgeon told me that since I had my sigmoid removed, they would just be able to see things so much better doing the open, and I sure dont want to be back in there again. He told me that you wouldnt end up with a bag unless you became incontintent and have had those tests done that show it shouldnt be a problem. Has anyone ended up with upper GI problems after the surgery? Thats one thing I always worry about since i do have reflux.
Posted 4/14/2006 8:39 PM (GMT 0)
Mom, I started having some reflux problems almost 1 year after surgery, I really don't think the 2 were related though.  I think it is completely normal to have negative thoughts also.  I did the whole time, even while they were putting in my epidural. 

~Somer

Posted 4/15/2006 2:22 AM (GMT 0)

MOM - I am VERY happy that I had this surgery and I would do it over again in a heartbeat.  Im glad that you have found a well reknowned surgeon, one of my concerns going into the surgery for me was not knowing much about the qualifications of the doctor.  I knew some great GI doctors and surgeons where I work, but I didnt wanna have the surgery in my hospital (too many people I know) and none of the Gi docs would give me their opinion (disappointed I didnt choose them).  Anyways, I ended up choosing the surgeon with the best OR technique (found a friend who works in the Or who told me this) and with the lowest infection rate.  My hardest time was the prep, I was vomitting profusely, very dehydrated, and getting extremely sick.  They also were questioning whether I was throwing up stool, so I was admitted for an NG tube and the sort.  I had a rough night and I cried alot, but I just kept in mind all of the people who had a positive outcome and how I would be better.  I thought of Somer alot, LOL!

Christine - I was scheduled for a lap, but I was opened due to spleen bleeding and difficulty visualizing the field.  Converting to an open is common, although you have a longer scar I am very happy with the open because they can better visualize the surgical field and I have had NO bowel complications since.  I did have a problem with my incision, but I also overdid it when I came home and split the incision pretty bad. Because of this I have a pretty large scar... but who cares... I wasnt planning on wearing a bikini anyways!  Good luck!

Hugs,

Emma

Posted 4/15/2006 3:47 AM (GMT 0)
Emma, Thanks SO much for your support. I think maybe as the week goes by I will get more comfortable with this. I mean, I knew it was coming, but it all just seemed to happen so fast. I was expecting to have to wait a month or two. But I guess that can be a good thing in a way too...less time to think about it. I dont look forward to the prep at all, but they said I might be able to do the miralax prep instead. We'll see though, sounds too good to be true. Did everyone here use Golyghtly?
I cant help but think how much CUPBOARD space I will have once my arsenal of laxatives can be moved out!! (you have to find the bright side to everything right?). I wonder how Tweety is doing? I hope she posts here soon!
Posted 4/15/2006 5:05 AM (GMT 0)

LOL at your "arsenal of laxative supplies"  LOL!  I originally was supposed to do the visicol prep which consists of 20 tablets, 2 every 15 minutes and lots of ginger ale.   After the first day, the tablets expended but nothing came out... it was violent!  I havent heard of the miralax prep yet, although miralax was the only drug I took that worked... even the go lytely didnt work ... i ended up having a ton of enemas and that finally worked!

You will get more used to it as it comes closer, mine was also rushed... in fact I think alot of people were like that.  I saw the doctor on July 5th, and I had surgery on 20th.  Did you have a defectography yet?

Hugs,

Emma

Posted 4/15/2006 9:31 PM (GMT 0)
Wow, it sounds like you had a really rough time to say the least.  I have taken Miralax before, but for the prep, you take the whole bottle and it doesnt have the taste of the golyghtly.  The Visicol prep sounds ok...I think thats what they use before colonoscopys now isnt it?    I'm going to have to go stock up on jello and juices and broth before this starts so I dont have to go into a grocery store during the liquid diet.  I could just picture myself back in the bakery stuffing my face with donuts.  eyes Oh Well, I suppose I'll survive.. things can only get better.  Thanks again!
Posted 4/16/2006 3:08 AM (GMT 0)

MOM - you know what, that is an ingenious idea... the active ingredients in Miralax is the exact same thing that is in Go Lytely (Polyethyline glycol) only they found a way to make it more palatable and dissolve better in water!  If you have alot of problems with cleaning out and stuff, I would start the clear liquid diet 3 days prior to the surgery... at least this is what I did because I knew the prep wasnt going to work.  I often joke that the cleaning out was by the will of god, because i did not take enough prep to have results... yet somehow 4 enemas worked (when I had my colonoscopy I had to have 15) so I really think it was by the will of God. :)

Tweets - how are you doing?

Cathy - how are you doing, how is food going?  Salad is still a bad option for me.  I had to give myself 3 enemas last night because I started vomitting stool and I didnt wanna go ER... so I just kept forcing fluids and enemas and I cleared out.  When I dont drink water it is just brutal on my body (I had school Tues, worked Thurs and Friday) and I dont get enough water... gotta get that water in!  I am feeling much better today, although my tummy hurts a bit! :)

Hugs,

Emma

Posted 4/16/2006 10:37 PM (GMT 0)
Hi everyone,  I really need some help here.  I have been reading and reading all day long about my upcoming surgery and I think I have literally scared myself sick!!    Can anyone tell me about small bowel obstruction? Is that something that happens immediately after surgery, or is this a life long problem after this surgery that randomly happens?  I just cant imagine having to keep going to the ER to get an NG tube (can you tell I'm really freaked out by those?)  We all have our phobias and that is definately mine!!    Maybe I shouldnt be reading so much.... I dont know about you guys but sometimes my imagination can really run away from me and I get pretty scared.   Please tell me again that I'm doing the right thing for this lifelong problem.  Thanks!!!!!!!!!!!!!!
Posted 4/17/2006 1:45 AM (GMT 0)
Mom, a small bowel obstruction is something that anyone who has had any abdominal surgery is at risk for.  You may or may not develop one.  Just make sure you keep yourself hydrated, and make sure to watch for any signs of obstruction.  I don't think reading is bad for you to do.  I think the more information the better.  As far as the NG tube goes, I was really scared about that too, and it definately wasn't pleasant, but you know if you need one- you need one.  I don't think there are many of here who didn't have to go through that torture. sad

~Somer

Posted 4/17/2006 2:48 AM (GMT 0)
Hello everyone - it has been awhile since I posted. I had my surgery on 31 Jan 06. I stayed 14 days in the hospital and was home a week and had to go back for three days due to a urinary infection. I was dehydrated among other things. Since then things have only gotten better and better.

For those of you facing surgery, I was horrified - but am so glad I did it now. I had the worse time with all the medications they gave me - it was like I had a reaction to every one and the pain medication made me freak out. After the third day I refused the pain medication. The NG tube was not that bad and that was one of my greatest fears. On day six, I assisted the doctor in pulling it out.

When I came home I was going to the bathroom about 10 times a day and taking Lomotil about two times a day. Since 23 Mar, I have not had to take any lomotil and now I am going 2-3 times a day. The nurse told me in the hospital that I would not have a formed stool, it would always be like mud, but within the last week, I am beginning to have formed stools. I have limited myself to chicken, pasta, pizza, potatoes, etc., and stayed away from the salads and spicy foods, but am testing the water slowly.

Emma/Cathy: I have a few questions, I lost 20 lbs after my surgery and to tell the truth, it feels good. I was so bloated before and felt like I had an inner tube around my middle, that has gone away and I have even bought new (smaller) clothes. I have always been small, but as my constipation got worse, I gained weight. (1) Did you loose weight and have you kept it off? (2) Does you stomach ever bloat anymore? (3) (Emma) - I guess I was not aware that you could take enemas after this surgery? Can you take laxatives, if need be? My surgeon told me however your body is adjusting at six months will more than likely be the norm, do you find that to be true?

I am VERY PLEASED and life is wonderful. I have a 9 1/2 inch scar down the middle of my stomach, but it was worth it all. GOD IS GOOD!!!!!

I have been off work since 30 Jan 06 and tomorrow is my first day back. I am having anxiety. My job is really stressful and I have told myself I am not going to get into the "stress" of it all as I don't want it to affect my stomach.

GOD BLESS YOU ALL!
Nonna
Posted 4/17/2006 11:43 PM (GMT 0)
Nonna- I lost 27lbs, and I have put about 10 back on. My last surgery was on Feb 6th, 06. I never feel bloated like before, but my belly makes lots of noises. I came back to work in the beginning of March. It's pretty stressful at times. I do have to make sure that I make time for restroom breaks, but overall it's going well. I certainly am still working on building up my stamina again. Hope this helps!

Cathy
Posted 4/18/2006 2:09 AM (GMT 0)
Nonna,   I was so glad to read that someone else has a bad reaction to those pain meds. They made me VERY AGITATED and they kept telling me it would help me to relax.... yeah right!   Im wondering why everyone lost so much weight?  . Is it because of the prep and eating so slowly after or is it something else?  I would like to loose about 5-10 lbs and that would be fine by me!!  But i'm sure I'll be the one who GAINS weight from this and ends up in some text  book somewhere as "that lady who gained weight"  oh well...... thanks  for your help!
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