HealingWell
Search Close Search
☰

Total Colectomy Part 11

Support Forums
>
Ostomies
✚ New Topic locked
1 23 4 5 6 7 8 9 10
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 5/2/2006 1:43 AM (GMT 0)
Mel, I know a lot of women on here have lost a lot of weight because some of them had some complications. I only lost 5 pounds or so, but I guess for me it wasnt about the weight loss, I just wanted to feel better. But I know what you mean.... every cloud SHOULD have a lilver lining right??? Also, I have not been going 10-20 times a day like some people amaybe 3 at most. i think I'm eating too many carbs!!
Posted 5/2/2006 3:12 PM (GMT 0)
mom 23  thanks so much for answering me! tomorrow is 3 weeks out for me and i have started doing housework etc because i have 4 children. my doc told me i could drive....but he is crazy because i do not feel well enough! i get sweaty and clammy whenever i do get up and do anything. until yesterday i was in the bathroom about 15 times a day and now it is about 6, and it is less water. are carbs bad for slowing "the works" down? my doc told me to drink gatoraid due to the electrolites, but i do not want to drink all of that sugar. i am about 20lbs over weight and i do not want to make it worse. thanks for listening to me and for your help!!!!

Mel

Posted 5/2/2006 8:56 PM (GMT 0)
Hi Mel,  Oh Boy, you're 3 weeks out and you are still exhausted?  I am 8 days today and already i'm so bored ,I think i'm going to loose my mind.  But I'm still very weak.  But, I think yours has A LOT to do with having 4 kids!  You have to go easy on yourself.  I know what you mean about starting to do something and feeling all clammy, like you have to sit down.  When will THAT end?  Anybody want to give me some answers that I probably dont want to hear??  Haha!  One thing I found to drink that is wonderful, is called  "Smart Water"  I found it at Target and it comes in a large bottle, but it has electrolytes in it and maybe 10 calories.  It sure helped me through my prep and I feel so much better when I drink it.   If anyone has a good suggestion for a good vitamin to take I would like to know.  Of course I dont think I want one with iron or calcium because we all know what those do.  I'm feeling better today than yesterday because i think the narcotics are finally out of my system.  I'm just on Tylenol....i definately cant use oxycodone...it made me crazy!!!!!!!!  Hope everyone is well!
Posted 5/3/2006 3:12 AM (GMT 0)
I am so excited to know about the Smart Water! (thanks) I also had a rectocele repair, which adds to the recovery time. Today is the first day that I felt a lot stronger. I cleaned the kitchen and did laundry, etc, but then I hit a wall and felt the need to lay down. After resting for a while I got a second wind. I am mentally bored so I have been filing papers, writing thank you notes and researching things on the internet. I hope you feel stronger every day!
Posted 5/4/2006 1:48 PM (GMT 0)
Hi everyone,  Just wondering if I could get some input from some of you.   I am feeling ok, just kind of weak.  My question is, did  a lot of you not have much of an appetite or find yourself getting full very fast after your subtotal?  I know i'm only 10 days out, but i just wanted to know if this was common or not.  Thanks everyone
Posted 5/5/2006 12:11 AM (GMT 0)
mom it sounds like you healing ok? i am still trucking along alot of pain and all. still trying to work my 12 hr shifts. only 6 more working days to deal with till i go out. but sy surgery is not till the 24th. i would like to tell you all that this is such a great group and such loving people. i have been so sick and heard such "bull' from all these doctors over the years. you know when there is something wrong and not working right. but any way. i am very nervous but very ready if that makes any since. i have been in maturnity pants for way to long without being pregnant. when all this began i weighed 145 when i am swollen i weigh 163 i hope that i will go back to my normal weight again. i am sorry i am just mumbling. but i do want you all to know that i appreciate all the information on such a private matter. but i guess if your like me there are no private parts anymore. there has been to many things stuck in places they just do not need to be.

the only chance i get to see this is when i am at work and after i have my sugery i will try to go to the library when able to let you all know how everything is going. i hope all is well with everyone and keep on healing
Posted 5/5/2006 1:12 AM (GMT 0)
R,  I am actually feeling great.  I dont know if there was anyone more scared to death than I was, so I know how you are feeling.  Make sure you tell your surgeon before hand that you have a lot of anxiety and they will keep you very comfortable.  I'm just one of the "rare ones" that doesnt get calm on pain meds.  Even Benadryl makes me want to jump out of my skin!  I know you will feel so much more comfortable when it is all over. The worst part is right now, and the waiting.   I look at it this way..... so many times I dont see too many people on here but that is a GOOD sign in a way, because everyone has GOT THEIR LIVES BACK!!!!!!!!!!   I dont know if you're a believer or not, but one thing that got me through was just picturing GOD sitting by me holding my hand as they wheeled me into surgery.  It was a great comfort to me, but thats just me.   Hang in there, YOU CAN DO IT!!!!!!!!
Posted 5/5/2006 1:14 AM (GMT 0)

Hi Everyone..

Just hang in RBowden, soon you will be feeling better and all you will have to worry about is taking it easy...

Can anyone tell me, on average, how soon after eating the urge to go to the bathroom strikes....can you go out socially without a problem.

Thanks

Phyllis

Posted 5/5/2006 1:25 AM (GMT 0)
Hi phyllis, I can tell you that even this soon after surgery I have NO problems whatsoever holding it. For me its usually a couple of hours but there is no urgency or fear of embarassment if I'm not by a bathroom. At my age, I pee all the time anyways so i'm always looking for a bathroom!!!
Posted 5/5/2006 1:52 AM (GMT 0)

This is good news...I was under the impression it would be very soon after eating and kind of explosive...Good to know it will be pretty normal...but then again this is unfamiliar territory for me and I guess for everyone else with inertia.. I just can't wait until this is over..I get thinking is it really bad enough for this surgery..that's just the scare in me..I know it's bad and that something has to be done...Glad that you are doing real good there Mom.  Hopefully I will come through with flying colors just like you..Good night..

Posted 5/5/2006 2:48 AM (GMT 0)
Hey everyone,   I just had a total colectomy (Last Friday) and this is my first day home. I’m very happy I had it!!!  Having about 2-3 BM a day now, but the first few at the hospital were nothing more then watery blood, which I'm told is normal. Before surgery I dealt with SO much bloating...pregnant looking bloating. But now , after surgery , I'm still very bloated    Has any one else gone through bloating and distention after surgery? Will it go away?   Danielle
Posted 5/5/2006 2:50 AM (GMT 0)
Hey everyone,



I just had a total colectomy (Last Friday) and this is my first day home. I’m very happy I had it!!! Having about 2-3 BM a day now, but the first few at the hospital were nothing more then watery blood, which I'm told is normal.

Before surgery I dealt with SO much bloating...pregnant looking bloating.

But now, after surgery, I'm still very bloated

Has any one else gone through bloating and distention after surgery? Will it go away?



Danielle
Posted 5/6/2006 1:16 AM (GMT 0)

Has anyone experienced either of the following....

1. I have pain when I urinate....especially at the end of the flow. It has been 3.5 weeks since my total colectomy. Is that normal? Will it go away?

2. My heart seems to race when I have a bowel movement. Is that a sign of dehydration possibly?

Thanks for helping me through my recovery,

Mel

Posted 5/6/2006 3:11 AM (GMT 0)

Hi Mel

Any possibility you may have a urinary infection?

Posted 5/6/2006 4:14 AM (GMT 0)
Mel, By any chance have you drank anything with caffeine in it? I did on several different occasions and I thought my bladder was on fire. It took a couple hours to go away.
Posted 5/6/2006 1:32 PM (GMT 0)
tongue  Welcome! Mel38

After reading your questions, I know what you must be going through.  I, too, had a subtotal colectomy w/an ileal rectoscopy & rectopexy done Sept. 2005 after suffering 10 yrs chronic constipation. I had my reversal Dec. 2005.  After my reversal, I was going all day & all night to the bathroom, my bum was irriated, swollen, and sore my surgeon prescribed Lomotil at first 3x's daily then it went to 6x's daily.  I cannot go w/o eating every 2 to 3 hrs, if I do I get very sick and weak.  Recently, my husband was life flighted to a Trauma hospital for head trauma. I stayed w/him 12 hrs straight for a couple of days w/o eating every 2 to 3 hrs, because if I ate I would be in the bathroom every 15 minutes since my small intestine has not taken over the responsibilities of my large intestine yet.  If I eat all at one time like I did the other night, I get backed up and a fear of a blockage and vomit.   However, I make it a point to keep myself hydrated by drinking lots of water like Fruit 2 0 w/calcium & Propel flavored water w/Vitamins & Minerals because I cannot drink regular water. I drink a 24 pack in a week.  I go to Sam's Club & purchase a few cases at a time since that is all I really drink.  Unfortunately, I cannot drink carbonated drinks yet, just decaf tea and water.  As far as weight, I was skinny from the get go; unfortunately, I lost 28lbs since my reversal.  Before my reversal, I was put on a Total Parenteral Nutrition feeding for 14 hours a day for 2 mos to gain the appropriate weight to have my reversal since I lost weight from my subtotal which ended up in a ileostomy.  Boy was I depressed and I still am, because I expected to be 100% better after everything I went through.  My surgeon said it could take up to a year or more especially after what I went through (Major complications totalling 23 1/2 hrs of surgeries). I had a lot of replies from this forum that in time I would put on the weight and feel alot better.  I didn't drive my car for at least 8 weeks couldn't do it & would not chance it either too weak.  I could not lift anything over 10 lbs nor could I push a mop or vacuum.  I have not gone back to work yet either.  I just take one day at a time and get plenty of rest.  So take it easy and don't push yourself that much.  You will probably feel much better before me!  However, my hair did thin out with some lose around the forehead w/the help of my husband's hair stylist, she got me a shampoo & conditioner that people who are going through chemo treatments use for thinning hair and it helped dramatically.  Well, I hope I answered some of your questions, and I hope you get better real soon.  Remember anything is better than what we all have gone through before our surgeries.  Angel

 

Posted 5/6/2006 2:15 PM (GMT 0)
Hi Ladies,

I am new to this forum, but I have been following your post for sometime. Finally got the nerve to join. I have read all post from #1-9 and some of #10. I hope it is okay to join in with you ladies.
How many of you ladies are 55 and over that have had this surgery? Of you ladies 55 or over, what complications did you experience? Was it worth the risk?
The medication Amitize was mentioned on this forum. My doctor prescribed it for me. I have only been on it for 7 days. I won't say it works or doesn't work at this time. I can only say so far that I had two BM's in the past 7 days. Which is better than 1 or less in 9 days.
I also found a website that spoke about Conlonic Pacing. Did any of you ladies try this before electing to go through with the surgery? My GI doctor is working on trying to find a surgeon in the San Jose area that does this surgery. My decision. I have had my problem for over 20 years and it gets worse with time.
I was ready to go for the surgery in February, but the surgeon wanted me to think about it for six more months and to try more options. I really do not know what more is left to try.

Thank you,

Resa
Posted 5/7/2006 1:22 AM (GMT 0)

Hi All,  It's been two weeks and two days since the ileostomy take down, and I will admit I have had fleeting moments wondering if it was the right thing, but like I said, those thoughts last about a minute.  Usually when I am dealing with a bad case of butt-burn.  Anyway, I've been keeping up with everyone and I am glad to hear so many are doing well and so many are giving serious consideration to their surgeries.  Folks it's hard to believe that just a few decades ago, none of this would have been possible. 

As for me, I am doing o.k., and am still trying to find my right diet.  Occassional bouts of the trotsky's, but I am controlling alot of it with Immodium.  It seems lately however, my biggest problem is gas, and not knowing if it's just gas or a surprise.  Especially in the evening.  Mostly my mornings seem o.k., although I don't eat alot in the morning.  Maybe a bagel (no cream cheese) toasted with a little butter.  It's after eating lunch that I seem to lose it for the rest of the day.  I don't eat vegetables or fruits right now and am mostly concentrating on meats and breads.  Any other suggestions?  I do Peanut butter sandwiches also and those help for a short time, but then I think they add to the gas.  Sleeping has been off and on.  Either I sleep good during the night with only one or two trips to the bathroom, or I am up for about 6 hours with 3-4 trips into a warm tub to settle things down.  It also seems that I am more comfortable sitting or laying down.  Standing with very little or no movement really seems to pull on the insides, like gravity is taking over.  It also increases the urge to have a movement and I usually do.  Any idea's on that also?  Thanks so much for listening, and keep me posted on how you all are doing. 

Phil

Posted 5/7/2006 1:51 AM (GMT 0)
Welcome Resa !  I just have to say I am just shy of 2 weeks post op subtotal colectomy and I feel great.  I have heard of the colonic pacing, but that is fairly new and I think that is more for gastroparesis than colonic inertia.   I would recommend this surgery to anyone who has suffered lifelong constipation if they are a good canidate.  Phil,  I dont have the "butt burn", but then I am only going 3 times a day or so.  Thats sounds so funny to say, because I would be lucky to have gone 3 times a month before.  Did your Dr. give you  a diet of what kinds of foods cause loose stools? My Dr. just told me that apple or grape juice will do it.   I will see him for my 2 week check this tuesday and he did say he would tell me about diet and such, but so far I am eating anything I want.  Its like I feel so good, I'm just waiting for the ball to drop any moment.  A pessimist from too many failed surgeries I guess!!!  Hang in there Resa!
Posted 5/7/2006 7:22 AM (GMT 0)

Mom23,  Glad to hear things are going well and hopefully the other shoe won't drop on you.  I am longing for the day of getting back to eating whatever I want.  That was one nice thing about the ileostomy,  I really didn't have any restrictions.  I ended up having my subtotal colectomy as the result of a perforated colon.  Mostly, I battled the opposite of what you had as far as I never had constipation.  I was going all the time with Ulcerative Colitis.  When my Doc told me that after the take down and healing process I would probably have to go to the toilet 5-8 times a day, he was shocked when I was rejoicing.  After 15 years of U/C and running to the toilet, that would be a step ahead for me. 

It's been a long 8 months and I know it is just a matter of time before it get's back together.  Just easy to get frustrated when you are this close to the end of the tunnel.  I go back to the Doc on Monday and hopefully I can return to work at least a half day's on Tuesday.  I have been off work since Feb. 1 and did go into the office yesterday (Saturday) to do some paperwork.  Funny, I was there for 3 hours and never once had to go to the restroom.  Mind over matter I think and getting something other than staying home close to the toilet might be the answer.  Thanks again.

Phil

Posted 5/7/2006 2:45 PM (GMT 0)
Hi,

Thanks for the Welcome, MOM23.

I went to many HMO's for my problem. I have been going to my current HMO for 14 years and they refused to acknowledge that I even have a problem. One of the nurse practitioners said, you will have a BM. It will either come out your bum or you will throw it up, but it will come out." Did any one of you receive such a comment? Any way last year I found another facility that I am currently going to.
The GI doctor did the transit test and told me that I am a very good candidate for this surgery. He informed me of the surgery and basically said it was my only option. My whole large intestine is not working. Both the GI doctor and the surgeron recommend a total colectomy. I would be left with a small part of the rectum and the anus. The surgeon said he would try to do a Closed but would change to open if complications arose. The surgeon I saw never schedules this surgery on the first visit with him.
I go to see my GI doctor on the 25th of May. If he hasn't found a colonic pacing M.D. and my current facility won't pay for it even if he does, I will move my appointment for the surgeon back to June if I can and hope he schedules me this time. I have severe pain throughout my bowel every one to four months which make it hard for me to move. It can last for one hour or for days. It leaves me doubled over. Hope this stops with the surgery. My biggest fear is Not Waking Up. I get complications from anesthesia.

This forum has been most helpful and I thank all of you for posting and talking about this personal matter.

Resa
Posted 5/7/2006 11:26 PM (GMT 0)
Resa, It sounds like you have found a really good surgeon.  When was the last time you had general anesthesia?  I think there are SO many advances with it and if you tell your Dr. maybe he can request an anesthesiologist who specializes in difficult cases.  Surgery is so scarry any time, but I really feel that this will help you.

     Phil, I know that someday we will look back on this as only a distant memory, but it sure does seem like forever when we are the ones waiting doesnt it?  I just need to be more patient and let my body heal, but the nice weather makes me want to get moving!  It's telling me now that I over did   it a little so I am going to lay low for a while. !!!

Posted 5/8/2006 2:44 PM (GMT 0)

Resa - save yourself some time and stress and get your records from every surgery that you have ever had.  As soon as someone says they have had problems with anesthesia any good doctor is going to want to know what medications you had. General anesthesia all has the same purpose but there is about 25 different combinations of drugs that they can use. 

I did this prior to my surgery because I always had problems with severe vomitting and dehydration as well as extreme sedation after surgery... well the sedation they couldnt fix because I dont remember hardly anything for 3 days after the surgery... but the nausea they fixed and I didnt start throwing up until almost 5 days post op when I had my ileus.  Its worth it! :)

I am still doing pretty well... does anyone else notice that they get backed up a bit if they dont get their water.  Every time I work the weekend (36 hours in 3 days) by Sunday I am distended and a bit uncomfortable and I finally figured out that I am drinking enough water... so now I make sure I have at least 80oz during those days and the problem went away!

Hugs,

Emma

Posted 5/8/2006 4:43 PM (GMT 0)

hi everyone!

Welcome Resa.

Phil- I felt pulling and tugging too.  And I had gas vs. stool confusion at first, but it went away quickly.  I am 3 months out and I'm still trying to figure out this new body of mine.  I'm finding that if I don't use force to evacuate, I don't get as much butt burn.

Emma- I feel like I should have moved things sometimes too.  I found that Starbucks frapaccino works really good for that.  It goes right through me taking with it everything in it's path.  I get that rectal sharp shooting pain sometimes, that doubles one over.  It eventually passes.  I need to pay more attention to fluids.

I looked at Target for that Smart water and couldn't find it.  Is it called something else, or is it located somewhere else than with the other drinks???

Emma or Somer- I'm hoping for advice here.  My ileostomy site that healed from secondary intention is adhesed to the muscle underneath and everytime I go to stand up, bend over, cough, sneeze, etc. it pulls there and is painful.  I've been trying to massage the area to try to break up the adhesions but it seems to just move everything else around.  I'm using scarguard on both the incision and stoma site (I'm a keloider) but that won't help the adhesion underneath.  Any ideas?

Mom23- things are sounding good for you so far.  Keep up the good work and don't rush yourself.

Angel- I think we've have similar paths through this journey.  Colectomy/perforation/ileostomy/takedown.

Mel- welcome.  I had burning to urinate for a long time after my last surgery, and I never tested positive for infection.  We decided it was just inflammation and eventually it went away.  I also take care to wipe front to back as a preventative measure.

Otherwise, hang in there everyone. 

Cathy

Posted 5/8/2006 6:20 PM (GMT 0)

Thanks for the advice!

I am struggling with bad headaches and nausea this weekend and today. I do not feel so good (previously felt better) and I do not know if certain foods/drinks can cause this. I do not even want to eat or drink because I feel so lousy. I feel bloated and it is very painful to press on my stomach. Any ideas?

Mel

✚ New Topic locked
12345678910