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Total Colectomy Part 13

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Posted 1/18/2007 3:49 AM (GMT 0)
Hi everyone,

We're having to start a new thread as we had reached our limit. So Total Colectomy Part 12 is now Total Colectomy Part 13! Hope everyone is doing well and having a good day.

gogently

Posted 1/18/2007 3:58 AM (GMT 0)
esoR,
You had asked about posting. With this running thread you're going to get everyone's reply to everything when you check the reply to this post. So yes, you're going to have to read backwards to the last post you read. Usually people are pretty good about putting your name up front in their post so they don't have to write so many. So scroll through until you see you're name in one of the posts or look for an individual post like I sent you, okay? I read about having to put your Mom in a home. I think that this has got to be the worse period of our lives. You feel like you're being yanked from both ends...with kids at one and parents at the other. In 2005 I had my son's wedding and not even 6 months later was spending with my father in law with hospice. I know how big of an adjustment it is. I hope you're handling things okay. Remember to take care of yourself first so you can then take care of others, okay?
gogently
Posted 1/18/2007 4:30 AM (GMT 0)

enpointe,

I'm glad you're having another good day. How did your therapy go? Is it for the fibro or for the TC? I had read about the Boost and was wondering about that. Did the doc suggest you take it to help speed the wound healing time or for vitamin supplementation? They told me to eat alot of protein this week because it helps in the healing process. My pre op went okay. They are not even going to start me on liquids but will start me on soft foods after my surgery. That really surprised me. He thinks that I'm going to adjust just fine and says that they'll have me eating a few solids before I leave the hospital! No list of foods...just whatever goes down easy. Is that what they told you also? How soon after surgery did you have the NG tube? Was it after you had eaten something? Thanks for the info.

gogently

Posted 1/18/2007 4:32 AM (GMT 0)
Gogently, What is an NG tube?
Posted 1/18/2007 5:35 AM (GMT 0)

booty,

An NG tube is a nasogastric tube that they run through your nose into your stomach to drain it of liquids. They sometimes use it for TC surgeries and sometimes after if you develop an ileus.

http://www.medterms.com/script/main/art.asp?articlekey=9349

Posted 1/18/2007 8:39 AM (GMT 0)

Hi PhyllisB,

Did they suggest that you drink anything like Boost or Arginaid after your surgery to help with healing? I know you had mentioned about how some meds just go right through you...are you currently taking a liquid vitamin or one of the above? I got my grocery shopping done and I think I'm ready...I just really want to tidy up the house before Monday but I don't have a whole lot of energy...I took out my 'webster' and chased down the cobwebs from last spring and broke a sweat doing it! Its funny how when you sit in one place long enough that you start noticing things that you never would have otherwise noticed. I think my hubby is going to go nuts with my recuperation and with me making a 'honey do' list since I'm home taking inventory tongue How did your husband adjust to post surgery? Is this a big adjustment for you since you also retired about the same time?

Hope you are doing well and things are returning to normal...gogently

Posted 1/18/2007 2:08 PM (GMT 0)
I noticed TC 13 has been started twice.
Posted 1/18/2007 8:57 PM (GMT 0)

Hi Gogently,

I am currently not taking any vitamins...

As far as my husband is concerned, he is great, there is no adjustment that needed to be made.  I just go to the bathroom more than everyone else.....but he was great before.  I was fortunate that a colostomy was not needed.

You may want to get a few magazines, or have a book you have wanted to read or perhaps CDs or a ovie rental.  You may not be physically able to do a lot when you come home and laying in bed can be sooooo boring.  You need to listen to your body after surgery and not tire yourself.  You need all your energy to heal.

Good luck

Posted 1/19/2007 6:17 AM (GMT 0)
I went to the surgeon today and my surgery date is Feb 14th!

They wanted to do next Wednesday! I told them no, I just started some antibitocis for bacterial overgrowth and I want to finish them (10 days), plus the surgeon wants me to do a week of colon cleanse to make sure it actually gets clean. I have to do my prep slow because I have really bad potassium problems. I end up in emergency a lot. Then my husband is out of state for a week and I will not be able to go to San Fran for surgery without him. Also, I just was not mentally and emotionally prepared to have my whole colon ripped out in 6 days notice.

So this leaves me with less than a month to prepare! First they were going too slow, not it's all happening soo fast! I have so much to do! My house is a mess! My Mom wants to come from Washington stay and I can't even see my spare bedroom, I have been neglecting my housework forever! AHHH!

Anyways-Surgeon was great! He answered all my questions for over an hour. I will be having laproscopic total abdomenal colectomy. I will be in the hospital at least 5-7 days, he said maybe more because I live far away. He said I should be feeling fantastic after 6 weeks, I hope he is right! He said I will be on no more meds after surgery, just pain meds for a little awhile. Happy news! I am keeping all of my rectum, which apparently is not very strong and he and my doctor are very adament about me doing more biofeedback. It sucks having to drive all the way out there every other week, but is a small price to pay. So I will be trying biofeedback again after surgery.

Wish me luck! Here I go, won't be long now! (Hey, I can say I beat colon cancer!)
Posted 1/20/2007 5:37 AM (GMT 0)
Thanks Phyllis for the info. I know you're right about saving up the energy. I have been going hard for the last two days, running errands, getting a haircut, last minute this and that. So tomorrow I'm going to just crash. When I get like this I can't think straight and feel both tired and sick and overwhelmed. I figured tomorrow is really my last day before my surgery to rest as Saturday night I start my clean out for Monday. I will listen to my body after surgery. Thanks again for all the info and encouragement.
gogently
Posted 1/20/2007 5:42 AM (GMT 0)
booty,
That is great news! Take care of yourself and don't wait till the last minute to get things done...I think I might have cut this down to the wire! If I don't talk to you before then know that I'll be praying for everything to go well and that you'll have a speedy recovery.
gogently
Posted 1/20/2007 5:15 PM (GMT 0)
Hi gogently, you have been on my mind for the last two days and I was unable to find this thread and do not know how I did it just now. I was trying to contact the moderators to see how to start a new one. So, it will be Monday and I hope you will not be nervous, I really didn't have much feelings about it except alot of relief that it will all be over with finally. I am doing so good and can't wait until you will start feeling better. I am using the boost as a vitamin supplement and for the calories. I wasn't eating enough at all and just got full immediately. I am doing better with it now and am not drinking three a day. I will go into the ng tube at another time when you get home and will tell you all about it. It is too much for me to get into since I have to go out. My prayers are with you so much and I can't wait for you to get home. Remember, it will be hard to get up out of that bed initially, I was in for 11 days and by the end was still not going to the bathroom except for diarrhea and was unable to eat any solid food at the time. It was hard to walk and they really start you with that quickly. Just take your own time. My brother was in the hospital with me alot and was very pushy, " you have to walk now" he constantly said and I was losing my mind telling him I will walk just not this minute and when I am ready. When my dad came in I put on a smile and kept it pasted on because I didn't want him to see me any other way yet it was dishonest. I read that your dad has passed away and the situation with your mom. That must of been so hard to handle and you have alot of inner strength. I will be thinking of you alot and if I could I'd send you a teddy bear or flowers or something, just know that it will go well and most of all you will have a brand new life!!! My prayers and thoughts are with you. Enpointe
Posted 1/20/2007 6:28 PM (GMT 0)
Hi Everyone,

Enpointe - I pray you keep improving everyday. Have you tried Ensure for vitamin supplements? It doesn't taste as bad as it did in the 80's. They improved on the taste since then. Maybe buy a can and try it.

Gogently - Monday is the day for you. I pray it all goes well and afterwards you feel so much better. Post as soon as you feel strong enough. You mention you get brain fog. I also do. I think it has gotten me in a bad situation at work. I made a mistake I think, pretty sure I have. I won't know for sure until the file is located. I really need to speak to my supervisor otherwise I will be stressing and that ain't good. I also get what I call Night Haunts. I never get enough sleep. I am hoping all of my other symptoms disappear after surgery, if that day ever comes for me. My surgeon said he only uses the NG tube if necessary. He said only about 15% of the people need it and he doesn't want to subject the other 85% to it if not necessary.

Booty - you finally got your surgery date. That is great. Just a few weeks away. I will keep you in my prays as well. I think we live in the same part of the US. I think you mentioned you are only 2 hours from San Fran. I had my manometry test done at the University of California San Fran. They also did the bio classes. I was only approved for 2 by my HMO. My surgeon said he may do an ultrasound just before surgery. Hope all your other tests come out okay for you.

Everyone have a good day.
Posted 1/21/2007 6:04 AM (GMT 0)
Resa-
Thankfully I am all done with my testing! I don't think I could taken much more proding, physically or emotionally. :(
That suck about your insurance not covering biofeedback! I saw how much it cost my insurance, $1600 per session! Yikes! I'm always so thankful for my insurance, they have covered everything 100% so far. Except for one prescription, I guess you can't have it all, all the time though. I didn't complain.
I try not to complain having to drive two hours for the doctor, I know that is nothing compared to most people for a motility specialist.
Whereabouts are you? I live on the way to Tahoe up HWY 50, about 30 min. past Sacramento.

Gogently & Resa
Thank you! I will keep you all in my prayers as well! Good luck!
Posted 1/22/2007 12:33 AM (GMT 0)

Hi everyone,

Thank you for your prayers and wonderful ideas and suggestions. I'm all packed...not that you can pack much! I think if I had my druthers I'd rather be going some where warm and tropical for 7-10 days scool Maybe after this is all over I can go somewhere to warm my bones...it has been so cold here this year! I promise I will post as soon as I can sit long enough at the computer after I get back home. Be sure to check up on Lam and Tracy. Lam could possibly be home by now and hopefully she is doing great. Love you all and thanks again for the support...it means so much.

gogently

Posted 1/22/2007 12:28 PM (GMT 0)
Booty - I live in San Jose. My surgeon is in Hayward.
Posted 1/24/2007 4:27 AM (GMT 0)

Hi everyone...it took me a little while to find the new thread.  I had my surgery on Wednesday Jan. 17 and came home on Sunday Jan. 21, 2007, because as my surgeon said I was doing "remarkably well"  tongue  .  I did have a few complications in the hospital placing me on the telemetry unit for the first 48 hours. Blood pressure was tooo low. Once they got everything under control I began walking with physical therapy and tolerating my diet.

The night I was sent home, I was feeling too good and decided that I could eat a banancream pie shake, vanilla pudding, 2 variations of cream of potato soup throughout the course of the day only to wake up at 4 am washed down in a cold sweat in the most horrific pain I had ever experienced. My husband wasn't sure whether to call 911, or just try to administer pain medication.  Pain medication became a problem as every time I sat up I became dizzy and nauseus.  I can promise that I did come out of it alive, but I will always follow my diet because there is no food out there worth that kind of suffering confused .

I do have a question, as I am learning my body all over again? Were any of you put on protonix or aciphex througout your hospital stay? Did you have to remain on it for a long time?

Thanks.

Tracy

Post Edited (savanared) : 1/24/2007 7:07:50 AM (GMT-7)

Posted 1/24/2007 11:43 PM (GMT 0)
Hey Tracy,
I too came home with the "remarkably well" realease in only 3 days. My colectomy was on 12/14. I was lucky enough to have the stories in the forum to know not to trust that "eat what you want" statement... however my surgeon told me I would know if something didn't agree with me (nothing like a little self induced pain)lol.
I'm so sorry you had to find out the hard way. I had a similar experience 2 days after Christmas, but I caved, the pain was so bad my daughter had to call 911, Thank God I haven't experienced anything like that again!
Anyway to answer your question, I was on Aciphex but my doctor told me I could stop about 4 weeks post op.
You might have the burps for a little while, I think it's really just a preventative for the reflux. How is being home??
Take it slow no matter how good you feel.
KLH
Posted 1/25/2007 1:47 AM (GMT 0)
KLH,

Thanks for sharing it's nice to know I was not alone in my bad judgement. As far as being home, I tire easy, but have managed to decrease the pain meds daily. I am now increasing my diet slowly and only avg 3-4 bm's daily. I do not find them to be horrific as I once feared and actually a relief. I am havng some difficulty with the openings where my Jtube was placed following surgery -- they don't seem to be healing quite as well as they should.

Now that I am bringing various foods into my diet, does anyone know where items like turkey, beef, chicken and fish fit in and the best way to introduce ?

Tracy
Posted 1/25/2007 4:14 AM (GMT 0)
KLH & Savanared,

What are somethings that are good to eat when I first come home, what did settle well with you? I know everyone is different, but I could really use some suggestions. Basically all my surgeon said on this subject was: "trial and error, if it makes you sick don't eat it."

Thanks for the help!
Posted 1/25/2007 5:35 PM (GMT 0)
bootynoworky,

I am still on my liquid diet, so I am eating lots of cream of chicken soup, grits, oatmeal, pudding, jello and juices. I am tolerating all of this just fine, but have been unable to tolerate ice cream, milkshakes and most other dairy products. I will be introducing new foods into my diet over the weekend and will let you know what is working, but remember everybody responds differently.

Tracy
Posted 1/26/2007 1:48 AM (GMT 0)
booty, everytime I see your screen name it makes me giggle...it's quite creative
I'm able to eat just about anything now, spinach and I had an early battle so I'm a little afraid of it now, I haven't had a whole lot of vegetables I was warned early on about them,but I'm able to eat lettuce w/ tomato and a little dressing. My surgery hasn't been as great as I hoped though, my surgeon opted to leave more of my colon than we had talked about and I'm having just as much trouble as I was before the surgery I'm back to the vicious cycle of nothing moving without some help...I meet with him next Friday to discuss the possibility of going back in to take the rest of it. It's been a little depressing to say the least. Anyway, I know things will be better for you! I was reading back and I saw you had potassium problems, I was really sick for a couple months before my surgery too, with the bacteria overgrowth and then I got some funky sickness that was causing me to throw up faithfully every single night for for 2 months.... UGH it was miserable. After my prep prior to surgery my potassium dropped in the low 2's they had to pump 12+ bags of potassium in me in the hospital because it kept disappearing. I'm sure you know... but keep drinking gatorade and juice to help keep everything in check. Take care of yourself and make sure your healthy, I think it helps in the recovery process.
good luck with the last of your testing.

Tracy
They told me in the hospital that eating meats are best ground, but I tried fish a little too early I think, my belly had a really hard time digesting anything like that the first 2 weeks, but like you said everyone's different. There is a low residue, low fiber diet that makes simple suggestions that might be helpful just type in a search for low residue and it will give you a list of sights that might help.

KLH
Posted 1/26/2007 2:36 AM (GMT 0)
Hi Everyone,
KLH - I do not understand why your surgeon left any part of your colon. Both of the surgeons I spoke to said they would not leave any of the colon. I asked if we could and both said they found that leaving some of the colon only ended up going back into surgery and removing the rest at a later date. So they take it all on the first surgery. I hope everything gets better for you.

The bio nurse said vegetables can be eaten but best to cook them. No or little raw should be eaten. If raw is eaten it must be chewed extra well.

For the past two days I have had my same pain in my gut. Last night it hurt so much. I had to put my ice pack on. I am hoping that the surgery will end this vicious cycle. For the past two nights I have been getting my faithful charlie horses in my calves. Haven't had them in some time but they are back. My surgeon should be returning home from Africa any day now. Hopefully, his scheduler will call me with a date sometime soon.

Anyway, take care everyone.
Posted 1/26/2007 1:17 PM (GMT 0)

Hi Everyone

I also had asked my surgeon whether some of the colon could be left in and he said no.  That the condition is diffuse and they can not know what part of the colon has the problem.  If I had insisted on having some remain he advised me to get another surgeon because he was not going to set me up to have a failed procedure and the need for second surgery.

Posted 1/27/2007 6:25 PM (GMT 0)
Originally he thought that leaving me some would keep me from having the poops all the time. It made sense to me at the time that 6" would help me keep control of my bowels, little did I know that he would leave too much and I would end up right back where I was.  He left a little more than a foot, thinking it would be okay. I was hoping at some point it might kick in but each day is a little more discouraging.  Anyway... the pitty party isn't helping me any I'm trying to make the best of it until I see him on Friday.  Should I be pushing for the entire thing to be taken? There's obviously a no fail rate then?? Any suggestions??? 

KLH

 

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