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TOTAL COLECTOMY PART 22

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Posted 4/19/2009 8:49 PM (GMT 0)

Linda,

To be honest, the prep was the worst part of my surgery, that and the NG tube although I've had one several times before due to the pancreatitis.  The actual prep wasn't bad, it was the antibiotics that my dr had me take with the prep; I had to take 6000mg of antibiotics and the one always made me vomit so I was going to the bathroom and vomitting at the same time.  I did the miralax and gatorade prep which was a breeze to drink and no it didn't clean me out, but nothing ever did; my surgeon didn't care because he said he was just going to clamp it off and remove it anyway.

Try to relax and get some sleep tonight; I'll be thinking of you, sayong a pray and sending ((((((hugs))))).

Judy

Posted 4/19/2009 9:42 PM (GMT 0)

Janie,
wellllll, don't know, i just remember them all!!!! yeah, you do remind me a lot of her. didn't she apply her e mail in her profile? other than that, i don't know of a way to get in touch with her, unless she decides on checking on us some time soon..

i don't know.. sounds like you're having a rough time   sad   i'm so sorry the donut caused you so much trouble, but you know, i guess it's a matter of triel and error, and once you figure out what you can or can't eat, it'll all be a lot easier to handle i'm sure. it just takes a while. i truly hope things settle nicely for you.

about my drs.. ugh, i'm SOOOOOOOOO frustrated they're not calling me.. it's been 2 mons already since their consultation. i'm just feeling SOOOOOOOO bad lately cry the pain is getting so unbearable with every little thing i eat!! i want to tell my gi that i don't need no psychiatrist and i want to just move on to surgery, cause honestly, everyday that goes by is torture for me and i suspect i'll end up more insane if i wait any longer for the surgery.

i'm hoping to catch him on the phone this week.

but, hey, other than that life is GREAT and G-D is GOOD!!!!

Linda..... i want to join you tomorrow!!!!

Posted 4/19/2009 9:54 PM (GMT 0)
Judy-I'm doing Gatoraide and Miralax too. I don't expect this will clean me out! Oh so bloated though. I didn't get any antibiotics and it sounds like i should be glad. Thanks for your prayers-
Posted 4/20/2009 2:09 PM (GMT 0)

HI guys...

Not doing well. Have been crying for over 36 hours straight and been on xana around the clock. the only tine i am ok is when i am sleeping. I also am going through withdraws frorm all the narcotics. I was released 12 days after my obstruction and loop ileo. I cringe looking at my bag and I am not ok with it. Actually it beings me so much more aniety and i never know if I can ever love myself again.

Going to look into the k-pouch still @cleveland clinic. I know I cannot have bag forever and unlike amanda and Karen I cannot have my reversed. All I know is emotionally I have never been this bad in my life.....i just cannot do this.

Hopw u all are well. missed u.

lizzie

Posted 4/20/2009 3:31 PM (GMT 0)

Lizzie,

You poor thing.  You've been through so much, and your emotions are so high right now.  I honestly believe that because you're so emotionally drained all of this seems so horrible, but you WILL feel better.  I'm not saying you'll be ok right away with the bag, but I'm sure this desperation won't last.  When you start feeling better physically I'd start looking into other options, and I hope and pray you'll be able to have a k-pouch.  You just need to get yourself strong now though.  

I haven't been through what you have, but I did have to have a double mastectomy many years ago, so I do have a little idea of what you feel like.  Your body is not the same.  I had the surgery, had reconstruction, and although my boobs aren't anything like they were before, I'm alive, and that's what I concentrated on. I wanted to see my kids grow up, and live to see my grandchildren (I now have an adorable 5 month old granddaughter!). I had a pity party about my boobs for sure, but once I realized they weren't what defined me, and that I had my health, I was able to get past that.  I had/have a very supportive husband, so that certainly helped alot.  How is your husband dealing with this?

I'll be praying for you sweetie.  You've shown over and over on this message board how strong you are.  You WILL get through this, and you WILL feel better.  Things just seem overwhelming now.

Hugs, Janie

Posted 4/20/2009 7:56 PM (GMT 0)

AWE Lizzie.. it was painful reading your post  sad   i really think that it's all due to the mess of medications that is playing a roll on you and all of this emotional situation will calm down soon.

you're a positive person and you'll still continue to be one, this whole ordeal can't change who you are or what you are, so honestly, i have no dbout that the same old Lizzie will kick in back soon, the same strong, happy, loving, supportive Lizzie that we all know and love so much. you sure had your share of probs and you've made it and coped so bravely so far, so i have no doubt that once you're healed physically you'll be able to overcome this one too, cause you're a survivor and from knowing you so far, you're not gonna let yourself to simply crash.

please don't be so hard on youself and please give yourself time to heal. you'll see, the sun WILL shine on you again  :-)   even if it doesn't seem possible to you right now... you'll be surprised yeah !!!!

always loving you, honey!!!

and remember, G-D loves you too!!!!!

ummm... are you feeling better yet?

Posted 4/21/2009 2:44 AM (GMT 0)

Lizzie,

It makes my heart so sad to hear how sad you are cry . I remember when Amanda was having such a hard time with things and adjusting and how strong and encouraging you were for her. I know things seem awful to you right now just as they did for Amanda but this is the best thing for you to heal and get better; you have been so sick and unable to eat or have any output that your body was full of toxins.  Your body couldn't go on like that.  We are all here for you and continue to keep you in our prayers; baby steps...everything takes time...

(((((((((((HUGS)))))))))))

Judy

Posted 4/21/2009 4:38 PM (GMT 0)

Hi guys....

Thank you for all of your kind words. I was started on celexa and xanax (if a can eat) and ativan if NPO around the clock. I am back in the hospital with an infection and abscesses. I had a fever of 103.7, my sats were 72% on oxygen and in extreme pain. I had to try some dilaudid again today to see of this could take off the edge. The abscess is close to my stoma. They are maybe going to put a drain in it depending on the size. I could not even more or get arounf. I have not eaten again in 3 days....so this is about 12 days almost of NPO. I think i am down to about 108 and this is with a swollen belly.

They told me I would have died with the bowel obstruction and that although it was unfair it was my only choice at compatibility with life. I still feel helpless.....i hate to look in the mirror, but the smaller opaque bag is much better. Still getting consult at cleveland clinic. I am not sure I will get approved. Please say you prayers for coverage and for me to learn to lovr myself again

Posted 4/21/2009 6:20 PM (GMT 0)
Lizzie, i'm saying a prayer for you every day, honey!!

so sorry about the infection and abscesses. what is sats and what do you mean oxygen??

anyways.. look, with EVERYBODY loving you, you won't be able not to love you too, right? i mean with everybody's love you'll have to also love you, cause that way it'll be impossible for you not to love you while everybody so loving you, makes so much sense, right..?

ahhhh... and i love you!!
Posted 4/21/2009 9:53 PM (GMT 0)
Hi everybody. My name is amanda, I am not a "newish" member, just do a lot of reading and never any posting!

I had suffered from colonic inertia since I was 18 (I am 24 now)...it took that long for me to be able to have surgery. I had a subtotal colectomy on the 2nd of april and as I may be sore still, I have never felt better since I can even remember.

I went through such a run around...with psychiatrists, sitz marker tests, baruim tests..all the motility tests you can imaine. They tested for underlying causes...I.e. mutiple sclerosis (my mom has) etc...had me evaluated and see a psychatrist (like you hodya)

Its been a little over two weeks and I'm already back to work. My drs let me do my own prep since I was up to 40lax everytime I needed a bm and the stuff they give just swelled me up and hurt so bad I could hardly walk.

I am so xcited to finally be able to wear jeans again. Being swollen all the time I had to invest in tons of stretch pants. ;)
Posted 4/22/2009 6:58 AM (GMT 0)
hi Amanda,
so nice to meet you!! i'm so glad you're feeling so much better now and feel you made the right thing. i wish you the best and forever health!!

about the prep they give us.. well yeah, the same thing happens to me when i drink it, it just doesnt work and stays stuck in there and it can last like that for DAYS!! so i wanted to ask you what do you mean your own prep, what kind of prep did you do to clean out?

although i know from reading about previous stories on this board that they can go a head even if it's not all cleaned out, i'd still rather go clean if it's possible

can i ask you some more questions, like how many bms do have a day, did you have some sort of a functional/anatomic prob in your rectum before the surgery, like anismus, prolapse, rectocele? do you now have probs evacuating when you feel the urge? do you have accidents?

please check in every once in a while to give us an update on how you're doing.

i wish you endless health!!!!!
Posted 4/22/2009 1:13 PM (GMT 0)
Lizzie

You poor girl going through another hurdle - it is not surprising your self esteem is taking a knocking with all that has happened. what really annoys me is WHY DID THEY TAKE SO LONG TO FIND THE BLOODY OBSTRUCTION!!!!! it was obvious something terrible was wrong and they just kept you waiting - its not your fault but theirs. You are not helpless - you are going through a traumatic time and depressed which is to be expected. when all this problem settles and you are free from absess and infection you will start to be ok. what is the outlook did they say? and why did you get this absess? xx
Posted 4/22/2009 9:08 PM (GMT 0)

Hi all.....

Still in the darned hospital. It has been about 15-16 days now I believe. I had a needle aspiration of the abscess and have been on antibiotics. I feel much better without fevers and such. I am still short of breath (but chest ct showed no Embolism) and I still have pain where the abscess is. I hope it does not come back. They are not sure why I have it or what cause it. If I can start eating better I may be able to go home tomorrow. I just have no appetite. Mentally I am a little better....I have not wanted to jump out a window yet today!

They said I have a slim chance of being reversed naturally. It seems two doctors feel that if my body rests then my rectum may work again or better, but this to me is far fetched. My only other option is the K-pouch and I make my payment tomorrow for the Cleveland Clinic and for now self pay appt. about 600 US dollars. So thats the plan so far. I have to wait and here what my insurance company says. I am hoping they can see how this is affecting me mentally and see that I deserve a chance.

Miss you all so much.

Lizzie

Posted 4/22/2009 9:45 PM (GMT 0)
it's good to hear you feel a little better, Liz. i'm so sorry, i saw you started the chat on facebook, i wasn't sitting infront of my computer and by the time i saw your message you were off line. anyway, maybe some other time.

i don't understand, why were you short of breath? what's that got to do with everything, i mean with the bowels? does it have something to do with your heart probs?

i've heard so much about clevelend clinic that it made me wish i lived in the USA so i could go there. i'm SOOOOO happy you're going there, i've heard they are amazing. i hope they can help you find a solution you can be comfortable with.

Lizzie, i'm so sad you're going through all of this. i just hope you'll stay strong always.

i miss you too and i so wish we could all be together.
Posted 4/22/2009 11:01 PM (GMT 0)
Lizzie- that's great that you are feeling a little better! NO jumping out of windows allowed! =) Sounds like you are on your way to recovery. Good luck with eating and hopefully going home. I hope your insurance will let you go to the cleveland clinic- I've heard they are wonderful!
Take care!
Posted 4/25/2009 5:25 AM (GMT 0)

Got an appt at Cleveland clinic with Dr. Remzi May 27!!!!!!..........best news in months.

Lizzie

Posted 4/25/2009 6:11 PM (GMT 0)

So I decided I need to ask how all of you are doinf instead of focusing on me and all of my prpblems? So let me know.....I care so much about each and everyone of you and I am not lying that if i did not have your words during my breakdown I am not sure where I would be. My husband and family were afraid i was going to hurt myself, but I pulled through and you all were a major part in my realization that I am alive and for now I just have to deal with the punches. SO tell me hoe you all are !!!!

I am still having extreme nausea and pain. I am on so many meds I feel like I own a pharmacy :) but they keep me very calm. I even walked through the grocery store this am. I am going to try and go t one of my most beautiful favorite pt's cancer free parties tonight for an hour or so, i think I will be ok if I am sitting down. I have had some cheerios plain today and a hot chocolate. I am really sick of people trying to force feed me....I just cannot move that fast with the food. I am only 11 days post-op from a very traumatic surgery and infection.

I have skin breakdown from a leak on the bottom of my ostomy and I have no idea what to do, my skin is raw and bumpy and hurts, but I asked to ostomy girls.guys what I should do......

Please let me know how you all are. I miss you and love you and will never forget your kind words.

Lizzie

Posted 4/25/2009 7:11 PM (GMT 0)
hey Liz, what the heck are you doing feeling guilty for, girl..? after what you've been through..?? we all love you and care about you and want you to be well!!

i'm so happy you already have a date for the CC, that's awesome! i'm just so thrilled and moved to hear how encouraged you sound, my dear, and i so want you to be happy and healthy and live life to the full (do you say "to the full" or "to the fullest"..?) anyways, BIG HUGS to you!!!

going to a party..? well, i have no experience in post op recovering, so i don't know, but if you feel well enough, then go for it, but i hope you don't overload on yourself too much too soon..

yeah, maybe some of the wonderful ostomate folks can help you with advice as for the skin and all.

as for me, seems like my dr has completely forgotten all about me and i just have to call him myself, but i'm having such a hard time doing it, it just seems so hard for me to "simply" press the digits of his phone number and tell him that i want to skip the psych part, cause i don't think i need it and go for surgery already.. i know i should do it, but i'm frozen to death and just CAN'T!! but i'm working on it, cause something has to happen soon.... other than that, everything's cool!!

always loving you!!
Posted 4/25/2009 9:34 PM (GMT 0)

OK Hodaya,

Tomorrow is Sunday....give that doctor a call!!  If you're too scared, give me the number and I'll call! tongue    I'm alot older than you and I'm pretty brave; I can call and remind him that you're patiently waiting.....  come on, you can do it!

Lizzie,

You don't have a reason in the world to be sorry about worrying so much about yourself!  You've been through so much, and I'm just glad to hear you're feeling better...and I'm sure you'll feel better and better each day.  Just don't  rush yourself, and tell everyone that you're working hard on fixing your appetite.  I know when I came home from the hospital, with NO problems, it took me a few days to get my appetite back, but it's back now for sure!  I can't help with any ostomy questions, but I'm sure someone will be answering you soon!

Please keep us posted on how you're doing, and hope you continue to feel better and better...and have a good time at your party.  You deserve it!

Hugs, Janie

p.s  Hodaya, pick up that phone sweetie!!

Posted 4/25/2009 9:57 PM (GMT 0)

lol Janie, you're too funny!!! i just might give you his number... tongue

you know what? it IS a GREAT idea idea !!! his name is dr Dekel and his number is 972-3-6974465... hehehe, now just kidding, i'll call i'll call (it really is his number..)

Posted 4/26/2009 12:16 PM (GMT 0)

o.k. as much as it hard to believe it, but i called my dr!! i'm SO glad i finally did it. he told me to come to his clinic on monday of next week and meet with him and the psychiatrist. he said that if the psychiatrist feels i'm o.k and don't need sessions, we can move on to real thing!! i sure hope i look sane enough to him.. ha ha.

thanks so much y'all, you really motivated me to do it already and i'm so glad i finally did.

much love to y'all!! 

Posted 4/26/2009 1:15 PM (GMT 0)
Way to go girl. I just saw that you posted his number, and I thought "what time is it in Israel? And what is Hodaya's name if I call?" LOL

I'm so proud of you!! Get things started. By the way, I had a much better day yesterday, just adjusting the meds a little to see what works the best. I'm on my way out shopping with my mom today. Wish me luck!!!!

Good girl, Hodaya!!!!
Posted 4/26/2009 2:32 PM (GMT 0)

Yeah Hodaya.....so glad you did it!!!!!! Sometimes, as sad as it it, you need to keep the ball rolling. Ventured out for 2 hrs last night and then crashed. I was so exhausted....but it was my pt's cancer free party and I needed to be there for her and I am glad I went!!!

Miss u all.

lizzie

Posted 4/26/2009 7:08 PM (GMT 0)
thanks you guys, yeah, it's also a great felief to finally do it!! you crack me up Janie.. yeah, wouldn't that be neat if you really called him..?? hehehe.. if i still couldn't do it, i sure wouldn't mind you doing it for me lol. so great to hear you felt better yest.
how exciting it must have been to go to a patient's cancer free party, you're such a wonderful nurse to your patients, Lizzie, you're so supportive and all even in your condition, i truly admire you for that. so is your skin any better yet? hope you're doing good.

hope everyone else is well. gosh i hope Linda is o.k, she sould be back any time now from her surgery.
Posted 4/26/2009 8:44 PM (GMT 0)
Janie.. how did the shopping go? hope there were no interruptions.
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