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Total Colectomy Part 9

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Posted 2/25/2006 12:10 AM (GMT 0)

Hi girls... I actually have another question...

Sexual Activity - I suppose everyone must be different, but according to your experiences, following surgery, how long will it be before we can have/enjoy sex again? eyes

I confess I can't wait until one of you regular members come back online... i love this forum  :-)   

Posted 2/25/2006 3:50 AM (GMT 0)
Jewls- you're looking at about 2 weeks. Positioning is key!
The weight loss thing is due to a dietary change initially, plus remember you'll have a prep, then you'll take a few days to really want to eat again and then it is a low residue diet or even liquids depending on your progress. I lost 27lbs, but I must admit that I had a little extra to loose. I gained about 4lbs back but I'm stable and very comfortable at my present weight.
Hope this helps. I'll check back tomorrow, as my daughter and I are in the hosp. with her asthma.
Rest easy.
Cathy
Posted 2/25/2006 4:13 AM (GMT 0)

Hi Cathy - Thanks for answering. :-)

 

Honestly, I am not considered overweight but I have to confess that I will enjoy the idea of losing a few pounds... and keep them off... I will keep my fingers crossed.

 

I was reading your journey w/ the follow up surgeries, and I am glad to hear that you are doing well. I wish to you and your daughter the best. My partner has some ashma too and needs that little spray to breathe... he denies it tough!!  Oh well...

I will start my prep on Tuesday afternoon and the surgery is not going to happen until Thursday - I guess I will have a horrible Wednesday. Still I am looking forward to geting rid of the constipation.

 

Wish me luck!! I will keep you guys posted as I go through the path.

 

Another question.... confused    how long after the surgery will I be able to go back to work?

 

I will check back tomorrow. I hope you and your daughter can go home quick!

 

Jewls

Posted 2/25/2006 4:35 PM (GMT 0)

@Jewls-Good luck with your surgery.  I just completed mine about 2 weeks ago and, like Cathy, have lost about 25 pounds.  My wife has went through this as well and our schedules pretty much were as follows (at least with our surgeon, yours may have a totally different routine).

Day 1:  Admitted to the hospital to begin IV antibiotics and cleanout prep.  Nothing but clear liquids today and nothing by mouth after midnight.

Day 2:  Surgery.  I don't remember much about this day except having to be re-cathed post-op because they could not get the first one to drain.  I woke up with an NG tube, central IV line, and JP drain.

Day 3: I felt a lot better this day.  It actually wasn't all that bad.  The pain was nowhere near what I expected it to be and the demerol pump did the trick when there was pain.  I was allowed to eat small amounts of ice chips on this day.

Day 4: Felt even better.  I ate tons of ice chips-nothing else allowed at this point.

Day 5: Still more of the same.

Day 6:  The doctor removed the NG tube and the the pain pump and started me on a clear liquid diet.  Pain medication given was Tylox.

Day 7:  Doctor started me on a normal bland foods diet.  When solid foods hit my stomach, we found that I don't tolerate Tylox very well and I began vomiting and was sick all day.  The plan was to discharge me today but due to the nausea and vomiting, that didn't happen.  Doctor changed the pain medication to Loracet.

Day 8:  Ate normal foods today with no problem.  JP drain and central line removed.  Discharged with orders to stay out of work for ~6 weeks.

I haven't had any real probs since I was discharged.  You learn that while you can pretty much eat anything you want to (at least I could) small amounts are the way to go.  Eat 5 or more small meals a day instead of a "normal" breakfast, lunch, and dinner.  My stomach just could not handle eating the way I would normally eat.

Pain has not been too bad, until yesterday, when I decided I was going to buy my daughter a bicycle.  Lifting is a no-no but I figured I could handle it.  Having some pain now!  I have a doctor's appt on Monday so will find out then exactly what I have done.

@Cathy-I'm sorry to hear about your daughter.  I hope she gets better!


Posted 2/25/2006 4:36 PM (GMT 0)
Jewls- Some went back sooner than others. Truely it depends on the kink of work. A desk job is easier to return to than up on your feet the whole day work. I am a physician, and I do urgent care. I'm on my feet the whole time I'm working. I too, was really sick, it took me a bit longer to recoop. The magic number was 6 weeks to really be feeling back to "normal". I know one of the nurses went back at 2 weeks!?! I went back gradually at about 6 weeks. I spent the 1st week in small time periods working and then got thrown to the wolves. I fatigued easily, but you'll have to build stamina- I did. This last surgery, I'm bouncing back faster. I'm already planning on returning to work next week in small stents of time. Monday, I'll be 3 weeks out.

I had to do a 3 day prep before me 1st surgery, so I was whipped out by surgery time. I think 2 day is better. You really do need strength to dight back after such an insult as major abdominal surgery.

I wish you the best. Have someone post for you to let us know how you are doing. Don't forget the Cottonelle, Charmin and butt cream, it really does help.

Our prayers and thoughts are with you.
Cathy
Posted 2/25/2006 11:55 PM (GMT 0)

   ~ kntkyboy71 - Thank you so much for the detailed description... this forum helps a LOT... I was so scared once I got the date for the surgery... I felt much better after reading about all of your experiences.  My prep will begin 1 & 1/2 days before the surgery - yours was one day (at the hospital?) and Cathy's 3.. - It seems that everyone's different. I am happy to find out how well all your days went right after "the day" - hopefully I will have the same luck.  Yayyyy really looking forward to losing the weight -- it looks like a repeating pattern.  I do do office work, so I am hoping to go back after 3 weeks part time... do you guys think it is doable? scool

 ~ Cathy W - As I just mentioned above, I sit behind a desk, so hopefully I will be able to go back at least part time after 3 weeks ;-)   The hospital I will be in has internet connection, so I will try myself send you guys notes from the laptop; if I don't feel that well I will have George keep you guys posted. cool

Prayers to all,

Posted 2/25/2006 11:57 PM (GMT 0)
Oh Cathy W, I forgot to ask... Is your daugher out of the hospital now?? I hope she is better and you both can go home... :-) Again, best luch, Jewls
Posted 2/26/2006 1:03 AM (GMT 0)
Jewls- We're not out yet but making progress. She's down to SVN's every 4 hours now but on double the usual dosage. Plus a whole bunch of other stuff. If we don't go home tomorrow then for sure Monday, barring any complications. She's definately "out of the woods" thou. Asthma isn't new to us, we've been fighting this for the past 2 1/2 yrs. We pretty much know when we're not getting anywhere at home and have a great husband/wife team of pulmonary specialists that know we do everything at home that we can before coming in to the ER. If I've gone to the extent of going to the ER, they know she's going to be admitted. It's bad when the whole respiratory and peds departments know you on a first name basis in a hospital where you don't work. I think this is admit number 13 or 14, I've lost track.
Thanks for all the thoughts and prayers Jewls and Kntkyboy(sp?).
Cathy (and Jennifer)
Posted 2/26/2006 3:09 AM (GMT 0)
Hey Jewels,
I lost alot of weight due to not being able to eat. I developed an Ileus,after my first surgery. I vomited for days. I lost 15 lbs the first time. I recently had surgery again, this time luckly I had the ng tube in during surgery and after. I think I lost about 20 lbs this time. I looked quite different this time after the hospital. I had full cheeks before the surgery and thin cheeks after.
I think it is different for everyone though. I am thankfully on the road to recovery.

Hey Lesa, I am feeling better. I hope the bleeding isn't anything too serious. I will be praying for you. How is your friend doing?

Hey Cathy,Chris, Glad your surgery went well and you are healing now.

I have missed talking to you all. I am able to now, because I am feeling much better.

Blessings to all,
Sasha
Posted 2/26/2006 3:20 AM (GMT 0)
Cathy,
I hope your daughter feels better soon. My youngest son has asthma, so I understand where you are. We have to do breathing treatments every night and when he is sick it is more often. He is only six though so I don't know if he will ever grow out of this. The doctor says no. I will be praying for you both.

Sasha
Posted 2/26/2006 2:54 PM (GMT 0)
Cathy: I wish a speedy recovery for your daughter, you all deserve an emotional break.

Question: Long term, following a total colectomy, is there more gas output than before? I was never a gaseous guy, and s/things such as rice seem to give me gas. When I was with the stoma that meant having to empty the bag more often, but now it seems to give me pain - I can't give a dignified description, but it feels like a doctor sticking a tube and slighly inflating the rectem.
Posted 2/26/2006 3:23 PM (GMT 0)

 ~ sachayac - Wow... it's a lot of pounds... did you get any back?? Why did you have the 2nd surgery? Is it more common than not? I know Cathy has had 3... sad   How long has it been for you since the first surgery?

 ~ Cathy - I am including you guys in my prayers ...  I know this feeling when people know you by name at the hospital... I found myself in that situation while on zelnorm... it took a while for them to figure out what was making me so sick... they finally told me to stop zelnorm after 3-4 consecutive visits to the ER..

Thank you all for sharing these experiences. I will sure keep you guys posted... :-)

Be back later,

Posted 2/26/2006 7:58 PM (GMT 0)
 Hi Everyone,

This is a similar story but I've surprised myself how well I've done.I'm a 38 yo female. I have been doing research on this board since Jan 20th somewhere in there. I came across it just before my subtotal colectomy on the 25th. I had some questions but didn't get to register and post in time. I went on clear liquids on 1/23 and golytely 1/24 and nothing after midnight. Surgery on 1/25 which was suppose to be laparscopically but due to small bowel adhesions from traditional gallbladder surgery 17 yrs ago my surgeon had to open me up. Prior to all this I had bouts of diarrhea several times a day and then may not go the next day but then it may resume the following day. They termed me chronic constipation but I disagreed because it was never a hard stool with the little balls. It would be normal to start with and continue on til Diarrhea. They said I had IBS. They diagnosed with that 6mos after my gallbladder surgery 17 yrs ago. I had never had any prior digestive problems before. I felt like it was something suddenly changed so I blamed it on the lack of a gallbladder because cramping and D would follow my eating. I suffered with this for the last 17 yrs. Back then, I started a low fat diet thinking that would reduce bile production but it didn't matter really what I ate but high fat food did make the cramping worse. Anyway I saw three different Gi docs and Ibs was thrown on me each time. They recommended high fiber but that caused tremendous pain as the stool move through my abdomen. Multiple medications prescribed without success. The last year the pain got sharper and more intense as the stool moved through my intestines and I started to go without food and lost 25 lbs since 8/05. Finally my last GI who I continued to follow up with for over a year. (I decided I would keep going until they figured out what was wrong) decided that I needed several tests done. sitzmarker x 2, colonoscopy, barium enema and small bowel study. He said my colonoscopy was difficult to say the least. He almost ran out of scope. He said my colon had become very long and dilated and so then followed the barium enema. The xrays looked like I could have starred in the Alien movie. I called it my alien baby ultrasound (trying to find humor in it). My transverse colon had fallen and then it went straight up towards my spleen and turned back in towards my spine under my diaphragm then came back down and looped several times.
He felt that the cause of the transverse colon falling was due to pregnancy. My Gi recommend surgery. So thats how I ended up having a lap assisted open subtotal colectomy. The surgeon's diagnosis is colonic dysmotility. The surgeon said I had the longest floppiest colon he had seen in a long time. They found polyps that was not seen during the colonoscopy and remove lymph nodes and they were all benign. I am currently 4 1/2 weeks post op and eating regular food. I have 2-5 BM a day and they are almost normal. I am still about 5 lbs less my preop weight and my appetite is way too good. I think I'm PMSing this week. I was in the hospital for a week and got dehydrated because I kept loosing IVs due to my veins blowing. I averaged a new IV each day. That got real old but I was up walking about 12 hrs postop with my morphine pump and was doing OK but about the 3-4 day got really nauseated. I didn't vomit just wished I could but was afraid to vomit. I didn't want a NG tube. I had lost my IV again during this and they were trying to let me go without it but I wasn't taking in fluids by mouth and I got dehydrated. They had to restart IV fluids and on day 5 and 6 I felt much better and lost my IV again but I was doing much better with fluids by mouth and had started clear liquid diet. When I got home I was only down 8 lbs from my preop weight not like alot of people I noticed. I hope this info helps others. I am feeling really good now the soreness is just about gone. I'm going to fly to Denver this weekend and I'm not worried about it. The previous week I didn't think I was going to be able to go. My Doc said I can return to work on 3/14. I am a home care respiratory therapist. I think I'll be ready. Best of luck to everyone. The only thing I would do different now is back in the beginning when I thought something was wrong I wished I had been persistent and not gave into the thought that this is somthing I would have to live with. So to all of you out there that feel something is wrong don't give up continue on to find out -request tests. Sorry this was so long. Take care Everyone!

Posted 2/27/2006 5:49 PM (GMT 0)
Hey Jewels,
I had to have the second surgery because I developed a small bowel obstruction. First they started me on IV fluids for three days, I had to have a gastrographin enema. It showed that I had some blockage in my anasmosis. Thats when the doctor told me he wanted to do the second surgery. He had to open me up because of the first surgery was done laproscopic. I had webbed like adhesions inside, my small intestine was in a ball with those adhesions wrapped all over it. He had to fix the anasmosis and unwrap the small bowel. He put some sort of medical saran wrap inside of me so I wouldn't develop adhesions so quickly. I am not sure if I had them before because I didn't have an open surgery the first time. My mom and my husband have been questioning the second surgery. I am just very thankful he was able to fix what needed to be fixed. But now we have this huge bill for not one but two surgeries. We have insurance but of course they only pay for a precentage of it. I have my doctor's appt today for my three week follow up. I feel alot different now, I wasn't my normal self after the first surgery. I am back to being my normal self, Thank the Lord!

Blessings,
Sasha
Posted 2/27/2006 6:24 PM (GMT 0)

Hi Everyone,

Is having a small bowel obstruction a frequent complication of colectomy?

Posted 2/28/2006 1:10 AM (GMT 0)
Hi Sasha,
Thanks for the info.
My surgery is in 3 days.... I am a bit stressed out. My prep starts tomorrow.

Happy thoughts for all,
Posted 2/28/2006 6:21 PM (GMT 0)
Hey Jewls,
I hope the prep goes fine for you. I used Tang with mine. I saw my doctor yesterday,he said I was doing much better. I still have these wounds that are taking their time to heal. I have to go to the wound care center tomorrow. Is your surgery on Thursday? I am sure everything will be fine. Where are you having it done? You will be in my thoughts and prayers. Just trust God and everything else will go smoothly.

Hey Cathy- How are you feeling now? Is your daughter better?

Everyone else- Hey hope you all are doing good.

Blessings,
Sasha
Posted 2/28/2006 7:13 PM (GMT 0)

Hi everyone,

We're home, again.  Jenn's doing much better.  We cut a deal with her pulmonologist and made a run for it late last night.  We'll go to the clinic this afternoon.  So, my biggest complaint is this:  there's no Charmin at that hospital!  My butt is some sore. 

Hang in there Jewls.

Cathy

Posted 3/1/2006 2:38 AM (GMT 0)
smurf  

 ~ Sasha, thank you for the words. My surgery is going to be at Lahey Clinic in Burlington Ma. What is this "tang" you used for your prep? Sorry - this is probably part of my language barrier (my first language is Portuguese)... I am sorry to hear about your wounds - hopefully the wound center will direct you to some more specific care to help it deal faster. Yes, the surgery is on Thursday and today (Tuesday) I started on clear liquids only after lunch time. Tomorrow will be "that" bad day. I guess I can handle it.. :-)  Did you have any side effects from the anesthesia?? It's what worries me most. 

 

 ~ Cathy, Glad to hear Jenn is much better... Oh, by the way, today I just bought my supplies - Cottonelle, Charmin.... all the necessary arsenal .... :-) Thank you very much for the tip... I guess it will save me from some pain...

 

God be with you all, Good night,

 

Posted 3/1/2006 4:13 PM (GMT 0)
Jewls- today will be the worst. It doesn't get worse than this. Tang is a breakfast orange drink made with a powder. It can help you get down the various liguids that you're going to be drinking today.

Jewls, I'm going to tell you ahead of time the same thing that I have to keep telling myself. Look each day for the things that are getting better and don't dwell on the things that aren't better yet. Today will be a long day and you probably won't sleep well tonight, but this too shall pass. Hang in there and a positive attitude is the key to success.
My prayers are with you.
Cathy
Posted 3/6/2006 3:31 PM (GMT 0)

Cathy, Chris, and Sasha - how are you guys doing with your recovery!

I have recently discovered that even though I am borderline slow motility still, a big salad will get things moving for DAYS of torture and cramping! :)

Hugs,

Emma

Posted 3/6/2006 11:55 PM (GMT 0)
 

     Hello Cathy, Sasha and everyone else  I haven't yet "chatted with".. 

                 I am back from the hospital today. I apologize for the "no updates". Now I am here to tell you how it was.  I was ready to run out of the hospital and not get the surgery done -- Thank god they held me there. The surgery and anesthesia went well. I woke up from it thanknig god that it was over. I don't even need to say anything about 1st and 2nd days... no drink/eat... by the 3rd day they removed the catheter and the tube ( nono ) and I started going by myself... Boy isn't it good just being able to go whithout any meds?  I am happier than I can actually express. Today I am slowly going to a semi solid diet...  I had a bit of ice cream (I was really craving it).. and a plain omelet... (boring but delicious for anyone that has been for days only drinkng...  I do have some cramps from gas in my belly -- hopefully get rid of them next time i visit the bathroom yeah

My next meal will be a light bowl of soup w/ noddles & chicken & potatoes... (I hope it doesn't kill me...)   Anyone could suggest food that goes easy through our "new" digestive tract?

 

Question for you guys... did any of you had this annoying pain on your left arm?? The nurse said its from the gas used on lap procedures... 

 

I hope from the bottom of my heart that everyone can have this experience as I did. :)

 

My thoughts are with you,

Posted 3/7/2006 4:48 PM (GMT 0)
Jewls- I'm so glad that you're doing well. With regards to food, increase your diet gradually and stay a longer time on the low residue diet. Little by little, you will know what serves you well and what doesn't. Look at Emma who just discovered salads empty her out. I know I've listed these a few times, but here goes: pasta, frenchfries, potatoes, bread, pizza work good for me. Beans, lettuce, cabbage, corn, carrots, red hot cheetos, don't really do me justice. You'll know (you can usually see it).

Emma- I've missed you. Hope you're doing well. So, do you know why you're slow moving through the small intestines? No scar tissue around the anastamosis?

I went to work Sat just for a few hours. It kicked my butt. I was totally spent for the entire weekend. What a waste of a weekend. Even when we think we're ready, we may not be.

Take care everyone,
Cathy
Posted 3/8/2006 5:05 AM (GMT 0)

Hey, guys. Sorry I've been out of the loop. Hope everyone's doing well...

Seems as though I have a bit of a complication: a "few" ulcers...stomach/small intestine that have been bleeding, but the most important from my perspective at least is the 4 inch one circling my anastomosis site. I of course was too out of it to see the polaroids my gi doc showed my husband after the scopes, but he said it looks nasty. I'm on a Crohn's med now, Asacol, even though I've never been diagnosed with it to hopefully heal the ulcers. The one on the  anastomosis site is what finally landed me in the er - think peristalsis trying to squeeze a watermelon out of your butt and what the resulting tearing/pressure would feel like and you get the picture. I'm a bit disappointed to be worrying with this stuff...still. And I find that I'm almost embarrassed for anyone to know about it. I mean, geez...I already had my colon out cause I'm such a wimp over constipation, and now I'm still whining?? I dunno. Maybe it was unreasonable for me to think there really was life without pain out there somewhere...

So has anyone else had this or heard of it?

Posted 3/8/2006 4:29 PM (GMT 0)

Lesa- After my second surgery, I had about 11 "abcesses" that they put drains in.  I have holes all over my abdomen where the drain tubes were hanging out.  I felt like everytime they wheeled me away that I would end up with 2-3 more drains.  I am pretty sure that I was still in my mental state of confusion. 

Hang in there.  Remember to think about the things that are getting better.  Like:  you ate a little more, or sat up a little longer, or stayed up later, or walked further, it could be anything.  I makes it so you're not dwelling on the negative.

You're going to feel better!  It's going to take time.  You're not that far out from surgery.  Take things easy and don't rush it.  It will come.

Cathy

 

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