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TOTAL COLECTOMY PART 22

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Posted 4/26/2009 8:52 PM (GMT 0)
Good afternoon, everyone!

I've been reading all your posts over the last couple of weeks and am AMAZED at the beautiful community you have! I am scheduled for a total colectomy (keeping my rectum, so no ostomy of any kind) on May 6th. I was diagnosed with dozens of polyps, one the size of a lemon, during my first colonoscopy at 45 (I was sent for the colonoscopy because I am anemic). I've had my genetics testing for gene mutations that can cause this, and fortunately all of that has come back negative. I do, however, have many, many villous adenomatous polyps that are throughout my entire colon. Sssoooo... out it comes in a week and a half!

Your experiences and advice to one another has been such a great source of strength for me. Especially Lizzie... you have been through so much and yet you keep looking for the positive outcome. And Hodaya, that you gathered your strength and called the doctor so that you can move forward with your life. I am awed by your support of one another and the great information you share.

All the best to each of you!
Donna Rae
Posted 4/26/2009 9:12 PM (GMT 0)
Hodaya,
Well, I may be figuring this thing out!!! I took 1/2 lomotil before I went to bed, got up and had a small bowl of cereal and took one whole lomotil...went to bathroom 2 small times, then went shopping for 3 hours with NO problems. Came home, ate turkey sandwich and pretzels, and have gone 3 times in last hour. So far so good. I can deall with this. The problem is that around 8 tonight, I'll start going several times and it gets looser as the night goes on. I just took 1/4 pack of fiber (1/2 makes stool harder, but hard for me to go) to try to firm things up a little more later. I'm trying to not eat anything that might mess me up for now.

I'm so glad you finally called, we need you to have this surgery and then we can all compare notes!! I'm sure you'll do great though, and now you may just be on your way!

Lizzie, sorry you didn't last long, but 2 hours is pretty good for just getting home from the hospital. Don't overdue it, get lots of rest and you'll feel stronger every day, I'm sure!

Hopefully Linda's doing well. Even if things went well, she may not be home for another day or so. I was in 8 nights with no complications, other than I couldn't pee at first! I sure hope she's ok. I'm sure we'll hear from her soon.

Donna Rae,

Welcome!  You will get so much support from this great community.  Good luck, and if you have any questions, there will always be someone willing to help out!

Janie

Post Edited (Janiepain) : 4/26/2009 3:29:01 PM (GMT-6)

Posted 4/26/2009 10:13 PM (GMT 0)
WOW that's so great, Janie, going for 3 hrs srtaight with no probs. did you buy something good? though i sure hope this time it works for you and you don't have to go all night. let us know how you did. keeping my fingers crossed.

so nice to meet you Donna and welcome!! i can tell you, when i found this site i was amazed too at the wonderful supportive ppl i found here and the wealth of information everyone has provided by sharing their stories and knowlege. this site is truly a g-d send and saved me from feeling so lost and alone with this prob.
so you don't have those polyps in the rectum at all? that's really good you can keep the rectum, it's a much better quality of life compared to those who have to have the rectum removed and have the anastamosis to the anus. i've spoken to 2 ppl who had this surgery for the same prob as you, but they both had their rectum removed as well and there's a huge difference with no rectum.
i wish you the best of luck with your upcoming surgery, may it be most successful beyond belief and endless health!! no more nasty villous polyps!!!
please keep us posted on how you're doing. G-D bless!!

well i'm off to bed, night.
Posted 4/26/2009 10:20 PM (GMT 0)
Lizzie.. take a look at the WHOOHOOOO thread that "bela_withmybag" started, i think there may be some helpful information for you there. hope it can help you with your questions.
Posted 4/26/2009 10:32 PM (GMT 0)
Thanks so much for the welcomes and support, Janie and Hodaya! i am very blessed to be able to keep my rectum, and I so appreciate the support of those who have been there before me.

Donna Rae
Posted 4/27/2009 4:32 AM (GMT 0)

Thanks Donna.....

Thank You for you wonderful comments, this site is wonderful and has gotten me through a lot of hardships. I wish you the best of luck with your TC. It is not a walk in th park, I cannot lie, but if you have any questions ask away. I am happy you do not have to have an ostomoy, I will tell yo uit has been the hardest thing I have ever gone through in my life. I hope that May 27 brings me good news and that insurance covers my appointments and hopeful conversion. I do not know what I will do if they dont and I am not a candidate. Its that small hope that gets me throught these days.

Hodaya- let us know asap how things go.....hopefully you will come back with a surgery appt! Love you so much and thinking anf praying for you.

Hope everyone else is well and Janie that your shopping trip was eventful, but uneventful :)

Lizzie

Posted 4/29/2009 12:07 AM (GMT 0)

My appt for Cleveland Clinic was approved today by insurance.....thanks for all of your prayers. Still in pain and very depressed, but getting by. Love you all.

Lizzie

Posted 4/29/2009 2:51 PM (GMT 0)

Just trying to check in. /still in the hospital...problems have slowed recovry In hosp 9 days now, but ea day am closer to health. I'll try to  check back, am tired.

Linda

Posted 4/29/2009 3:00 PM (GMT 0)
Linda,

We've been thinking about you.  Hope you get things worked out soon. I promise you that once you get home you'll be amazed at how much better you'll feel!  Please keep us posted.  Sending hugs your way!!

Janie

Posted 4/29/2009 3:12 PM (GMT 0)

Linda- So glad to hear from you.....and hope each day you get closer to being home. I was in 9 days with my TC too.....the first time. I iwsh you well and keep resting and walking. Thinking and praying for you.

Lizzie

Posted 4/29/2009 3:20 PM (GMT 0)
Yes ditto from me too - hope u feel better soon... :-) :-) x
Posted 4/29/2009 3:52 PM (GMT 0)
Linda, i'm so happy to hear from you, we've all been thinking of you. hope you get better soon and able to go home. take your time and post when you can.
love you and praying for you!!
Posted 4/30/2009 6:10 PM (GMT 0)

My bag leaked all over me today and everywhere. It has been such a panic stricken, humilitating morning even though I was home alone. I could not breath I was trying to clean up and get in shower as fast as i could. I just am having suck a hard time. I think its becuase my stoma shrink, but i do not know.....I cute my wafer smaller today in hopes of that never haooening again. I was in such a hurry I did not remember to put the barrier powder and skin protectant on so we will seee how my skin responds. it was still red and with a few bumps.

I have to try and stay positive, but it is so hard......I cannot wait to go to cleveland.....I need some hope.

Love u

lizzie

Posted 4/30/2009 7:21 PM (GMT 0)
Lizzie,
I'm so sorry that happened to you, but at least you were home. I can't imagine how difficult this is for you, but you have your appointment with CC, and hopefully this is just a temporary thing. Hang in there.
Janie
Posted 4/30/2009 7:41 PM (GMT 0)
Lizzie, gosh i don't know what to say.. or let's say that it's not that i don't know it's just that i'm not sure i can say it, cause i've never been there, and i feel like i have no right to tell you that i think that it's all very new to you, and you're bound to have accidends at first, and you're still learning how to deal with it, but things do get better with time after you learn how to deal with it better.. i feel like i have no right to say it, since i've never been there myself, but i truly believe it deos get better with time - all of the wonderful ppl on this board are a living proof to that.

if the CC can help you with the BCIR procedure and you feel it gives you a much better quality of life and feel much more comforable with it than with the stoma, then i couldn't be more happy for you. i just truly wish you have a solution you can be comfortable and happy with.

love you always, honey!!
Posted 5/1/2009 4:50 AM (GMT 0)

Just wanted to take a m onent from all of my complaining and tell you all on here how muxh I love the family I have gained from this site. We are from all different walks of life and all different areas of the world yet we all understand eachother sometimmes more than our families. I could not get through some days without you all......just having a moment and wanted you all to know this. Hope your having a wonderful day/night. Thank You from the bottom of my heart......

Lizzie

Posted 5/1/2009 3:21 PM (GMT 0)
oh blast.. i wrote a whole reply and it vanished.. ggggrrrrrrr

anyway, what i basicaly wanted to say is that i couldn't agree with you more, Lizzie, finding this site and all the wonderful, loving, caring, supportive group of ppl that're in here, was the best thing that could have happened to me. i no longer feel so alone and isolated like i used to for so many years.

millions of thanks to healingwell.com for creating this truly amazing G-D send site that enables to so many different ppl from all different places that share the same probs to be able to connect this way and provide each other with the comfort and hope, and priceless guidance and information that we couldn't have found no where but here. no one can provide better info than the ppl who go through this themselves.

and yes, i love you all so much too, you've been so supportive and helpful, and i truly don't know how i would have managed this difficult time w/o you all.
Posted 5/1/2009 5:34 PM (GMT 0)

BAck to the Emergency room....talked with my surgeon this am and told him of my continued nausea, peeing only twice a day, and pain in belly and back both on right side. He wants me to have a CT scan. Pray everyithing is ok......i hope it is. I cannot go back into the hospital.

Lizzie

Posted 5/2/2009 12:06 AM (GMT 0)
Hello my name is Marisa and I was just reading all the posts on colectomy. I am scheduled to have one in two weeks and am terrified. I feel that if I do not do this surgery i will live in misery the rest of my life. But everything is unpredictible for after surgery. I was wondering how you feel after surgery and how long of a recovery I am looking at
Posted 5/2/2009 6:40 PM (GMT 0)
oh Lizzie, not again.. please tell us as soon as possible what's going on, praying for you.

Marisa, welcome! i haven't had surgery yet, but wanted to wish you best of luck with yours, hope it's most successful and gives you the relief you need.

hope you all doing well.
Posted 5/3/2009 6:14 PM (GMT 0)
Hi guys,

Well I spent all day/night in the ER. The xray showed a suspicious spot and the Ct scan showed a small fluid collection again, but not big enough to drain at this time and hopfeully with abx it will go away. They also think I was having inadequate nause and pain control.....they changed my meds to Percocet 2 pills BID and compazine and zofran. I was supposed to call if pain continued, which it has, but I do not want to get admitted. They gave me a lot of dilaudud again in the hospital and I finally had some relief. They said my labs looked ok. Slightly anemic, but electrolytes and kidneys doing ok for now.

I took off my steri-strips yesterday and my surgeon did a phenomenal job with my open inscision. I think it is better than my laprascopic. I am still having appetite problems. I weighed myself this am at my parents and I was 103.8.....this is the lowest I have been in a long time. I ate a little turley this am and felt so sick, but I am trying. I just think all my meds are killing my appetite and the depression as well. I had another major leak at my inlaws on Friday and I have no idea why....I do not know what I am doing wrong. I am going to have to call the ostomoy nurse tomorrow. I am not even lasting the three days I am supposed to and I still have the skin breakdown.

So fornow, this is me.....I had a few cocktails. It was nice to have a couple, but dont worry I was careful with all of my meds.

I hope you all have had a wonderful wknd,

Lizzie

Posted 5/3/2009 7:00 PM (GMT 0)
my dearest Lizzie!! you're going through too much. i assume that a fluid collection is another way of saying an absses? what causes this to appear? i can understand how you feel about going to the hospital again, it's no fun, but you have to make sure you get the proper care you need. i hope that at least the change of meds now will do the work, and i'm glad you had some relief. knowing that the lab work is good is also encouraging.

i wish i knew how to help you with the stoma, i'm so sorry you're having such probs. your stoma nurse has to help you more with this. i hope you manage to figure it out.

i'm glad you posted an update, thinking of you and hope you get better soon.

much love to you!!

it's sunday 22:00 right now over here and in exactly 12 hrs i'm meeting w/ my gi and the psych guy, will keep y'all posted!! me so happy to finally get the ball on the road!! (that's the right phrase, right?)
Posted 5/4/2009 1:25 AM (GMT 0)
Hodaya I was wondering why it has taken so long for you to get this surgery. Are you in misery every day? I have had severe constipation for years and for the past 6 months or so I cant even have a BM without taking laxatives and suppositories. I will not take them during the week because I work and I would be even more miserable than I usually am if I do. So I will go 7-8 days without a BM. If I do not take anything it will be 16-20 days. But I have learned not to let myself go this long. I have my sitz marker test this week and a barium enema the next. My doctor is pretty sure that the colectomy is going to my only solution. I have noticed that a lot of women with this issue have also had a hysterectomy. Have you? All my friends are telling me to get 2nd and 3rd opionions, but I do not think I can wait around for that. I am in pain every day. You do not realize what a blessing it is to go to the bathroom like a normal person until you cant. Anyway, Lizzie I hope you are feeling somewhat better, it sounds like you have been through hell and back. I cant even imagine what you have been going through. Do you have children?

Hope to here from any of you soon Marisa
Posted 5/4/2009 1:38 AM (GMT 0)

Lizzie-Have been praying that you are okay.  Sorry to hear that things aren't going well again. I don't know too much about you're meds except that percocet never really did much for me.  Zofran was a life saver for me after I had pancreatitis, I needed it for nausea and ended up needing it 3x's a day for the next 6 yrs.  I was finally able to stop taking it after my colectomy surgery, but it was definitely the med that got me through for many years.  I hope it works as well for you.  It is extremely expensive; I hope your insurance covers it.

Will continue to keep you in my prayers; remember things will get better.  ((((((((hugs)))))))

Hodaya-can't wait to hear when you will finally have a date for your surgery.  You've waited so long and have suffered way tooooooooo much.  Prayers are with you.

Have either of you heard from Amanda?  Just wondering how she is feeling and if she is doing well?  Hopefully no news is good news :)

Janie-Hope things are going well and continue to slow down.

Marisa-Hi and welcome, everybody is different as far as how their surgery goes.  I had a subtotal, I have about 2 inches of my colon left.  My surgery was open and I was in the hospital for 5 days.  The pain was not bad at all, but I have had several abdominal surgeries so I knew what to expect; I also had an epidural.  I also went back to work fulltime after 6 weeks.  If you want morer information, you can email me.

Blessings, Peace and Prayers,

Judy

Posted 5/5/2009 12:18 AM (GMT 0)
Hey Judy, I was curious to know if your bowels are "normal" now. Do you have to run to the bathroom numerous times a day? 5 days in the hospital is not bad from what I have heard. I to have had appendectomy, hysterectomy, and a cecopexy. So I think I can expect the surgical pain. Just not too sure how getting use to eating and the new digestion will be. This site is great for talking to people who have gone through this surgery or going to go through it. Its great to talk to people who are a year out and see how they are today. I have a very active lifestyle ( at least I did) such as hiking, dirtbike riding, camping, and fishing and I am scared that I will not be able to do these things post surgery. I know I will need time to recover, but have you resumed all your normal activities? Thanks for listening and responding.

Marisa
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