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TOTAL COLECTOMY PART 30 page 12

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Posted 4/14/2010 2:16 AM (GMT 0)
Thanks Leslie, That will be my goal :-) :-) :-) Rosemary
Posted 4/14/2010 2:17 AM (GMT 0)
Be well and just have a great time...by the way I am doing great also...

Leslie

Posted 4/14/2010 2:23 AM (GMT 0)
Leslie, Glad you are doing good. Do you feel the need to walk right after eating? Am just wondering if I am the only one. Rosemary
Posted 4/14/2010 3:18 AM (GMT 0)
I will miss you Rosemary!!!! (tears) but have fun!!!!

Lizzie

Posted 4/14/2010 3:56 AM (GMT 0)
Hi Lizzie,

Not to worry. I will buy an internet package and keep in touch from the ship. The Queen Mary has better internet connections than most of the other ships. Sooo much packing to do tomorrow. I hope I don't get a peristomal hernia from all this dancing. But it's not like I'm doing sit-up's or anything. The exercise seems to be all in the legs with dance. By the time I get home April 29, you will only have about a week to wait until your valve revision. Sure hope you stay "OK" in the meantime. It is my hope they can get your RA or whatever that joint issue is under control. Then in your valve revision surgery that they can tell when they are in there whether fixing the valve will work or if you need to go straight to ileostomy. Would hate to think of you having two more surgeries. I know I'm thinking too far ahead, but just want so much for you to get successfully out of all this and feel good. AND then maybe we can all meet on the Oasis of the Seas. That is Royal Caribbean's newest ship. It has a zip line, Central Park, etc and 6,000 passengers. We'd be the smartest of them all. We'd be "outstanding in our field" (of expertise that is:-)

All my prayers with you,

Rosemary
Posted 4/14/2010 7:35 AM (GMT 0)
Hi Everyone, I haven't been on this site for a few days but I needed to check on Lizzie! I was so happy to read your long post, Lizzie; you are an incredibly strong person. After all you have been thru, you still sound good (you wrote with such clarity) and you forever show your concern for others in spite of the huge challenges you have had to deal with! I will continue to pray for you, I want you to do well, gain some weight and be ready for your next surgery (if you have to have another). I love your idea of all of us meeting somewhere in the near future; count me in! I may see you this summer in Grand Rapids, MI; I will be visiting my parents there in July?

Val, I saw that you are from California. I live in San Diego; what part of CA do you live in?

Rosemary, You are an inspiration the way you travel! I am so glad that you feel well enough to do all that you do! I had a sub-total colectomy with ileo-rectal anastamosis 1 yr ago. Because i have continued to have constant diarrhea after this surgery (which they sure didn't expect), I may have to go to a J-Pouch. I am going to see a colo-rectal surgeon this Friday to discuss my options. His name is Dr. Worsey and he trained at the Cleveland Clinic under Dr. Fazio. I think I have heard one or both of these names on this Forum before. Are any of you familiar with either of these doctors? I am pretty upset about the prospect of yet another surgery but even living on Lomotil and Vicodin (both to control the diarrhea), I still have problems with maintaining my weight, feeling weak, etc.. Thanks in advance for any info. you can send my way!

Gilda
Posted 4/14/2010 1:57 PM (GMT 0)
Hi Gilda,

I think Dr. Fazio was one of Lizzie's docs as I remember it. Even with an ileo I have weakness and have to avoid sugar, caffeine, alcohol, fake sugar, all those "speed up" things. I really do believe once the colon is out of the picture, we lose too much. WIsh me luck. Hope I'm not pressing my luck. But my thing is go while the going's good. As long as my ileo keeps working, I'm good to go. Good luck to you with your consults. ROsemary
Posted 4/14/2010 4:17 PM (GMT 0)
Rosemary  No I don't walk after eating.  But I do try to get a short walk in once in awhile...why?  Does that make you poop more often.  Right now I maybe go 2-3 times a day..

Leslie

Posted 4/14/2010 4:23 PM (GMT 0)
Have a wonderful time Rosemary!  Enjoy yourself totally!  Where will landfall be?  I'm very grateful that you will still be able to be with us.  At least, in between dances.  yeah

Leslie - It's wonderful that you are still doing well. 

Gilda - I'm from central California - Bakersfield.  What's that?  about four hours from you? Sorry that you are having difficulties and will be praying for you.

As I pray for each of you.

(((hugs)))

val

 

Posted 4/14/2010 4:33 PM (GMT 0)
val  Thank you, where do you live in Calif?  My daughter lives in San Lorenzo and I visit there often, maybe we could meet some day this summer when I come down if your not way far away.

Leslie

Posted 4/14/2010 4:57 PM (GMT 0)
Hi Liselie,

The walk after eating just seems to make me empty faster and feel better. Not sure if there's an issue but I do what works and feels good. RJ
Posted 4/14/2010 6:14 PM (GMT 0)
Leslie - San Lorenzo is in the Bay area, isn't it? That's about four hours from me. I live right in between where your daughter lives and where Gilda lives in San Diego. Maybe we could have a west coast get together sometime? East coast dwellers are invited, of course.
Posted 4/14/2010 6:49 PM (GMT 0)
Hi everyone - it has been awhile since I posted. I had a total colectomy with ileorectal anastmosis in Jan 06. Things were going great until Nov 09 and since then I have not been going to the bathroom as much (i generally go 3 times a day) and my stomach has been bloating and swelling, etc. In Jan my surgeon scoped me and said things look good, maybe whatever caused my colon to die was attacking what was left. about two weeks ago - CONSITPATION - again just like before the surgery. What are my options now? Can the surgeon take out more and how long will that last another four years or so? I read all this information about all kinds of ostomies, etc., and it just overwhelmes me. Any suggestions/comments? I am depressed thinking it has been so good and now it is beginning to be like before and I swell up after I eat and feel constipated.
Posted 4/14/2010 9:08 PM (GMT 0)
Hischildvalda
Ya, she is a half hr from the bay....she just called me ...my daughter that is and she is surpriseing me and she is on her way up for the weekend.  She said she need to see me in person to see how I am doing, cuz she does not think I am being totally honest with her...she is just a worry wort.......LOL

I told her I am eating and have gained a few lbs....but her friend that helps me right now says she does not see me eat much...so I guess that added to her worry.

I eat mostly at night for some reason, snacking, on fatning stuff.  I do not get very hungry during the day for some reason.

I eat a piece of toast and coffee in the morn, half turkey plain san for lunch,  and just a very sm. meal at dinner time.  So I get hungry at night when I am watching tv...oh well.

It will be nice to see her, cuz she came up for my surgery and had to leave the day after I got home.  So did not get to really visit with her..

She is also bringing her massage table with her...she is in massage therapist class at college right now.  So she can give me a gentle massage, that would be nice.  So I am sure the rest of the family are going to get one too....cant wait for her to get here...ttyl...

That would be great to meet people from on here..that would be a hoot....turn Leslie

Posted 4/14/2010 10:40 PM (GMT 0)
Nice to meet you Nonna. I'm a rookie here so I cannot answer any of your questions. But people here are very knowledgable and helpful - I know somebody has the answers.

Leslie - Why don't you send your daughter down the valley with her massage table? I'm willing to be her practice massagee. :)

Good news everybody - On May 20th I have an appointment with Dr. Eddie Soffer. His group specializes in motility studies. At least progress is being made. \o/
Posted 4/14/2010 11:02 PM (GMT 0)
Nonna, unfortunately I had the same experience. I had my open total colectomy in August 2007 and in January 2009 it just quit working. I was constipated again, could not have bowel movements, and laxatives would not help. I had an ileostomy, but it didn't work out and I was rushed to emergency surgery. Anyhow, my small intestines were so inflamed that I've ended up with a bag velcroed to my leg and this is how I go to the bathroom. In July I am having surgery again and hope to have a traditional ileostomy if all goes well.

butterfly
Posted 4/14/2010 11:47 PM (GMT 0)
Hischildvalda  Yes I should tell her that...LOL  Just got home from seeing my surgeon and he said everything looks great and that I am doing wonderfully and released me back to my PCP.  I thought that I had probably gained a few lbs...poop, I was wrong ....weigh the same as a month ago.137....but I got down to 133 when I first had surgery so got a few lbs that way.  God, I should have gained 10 lbs, with all the junk and candy and cake etc that I eat.

He also told me I could introduce fruits and vegies raw, in sm amounts to see if I can handle them.  But the few bites of salad I had the other day,  took longer to pass and I saw it again ..in the toilet...so for now not going there.  Today I have nausiated for some reason which is unusual for me at this point in time..

Well my daughter just messaged me and she is almost in Redding and it's pouring down rain just like it is here in Oregon.  But we are supposta get 4 nice days so I hope so.

You know what?  Having that J-Pouch inside of me is a weird feeling when you have to pooo cuz it feels like its laying in your but cheek, and you cant really strain to poop cuz you just dont have that anymore.  I am hooked all back up to my rectum so I asked him why he gave me the j pouch???  He said its a sm resivor for poop since you no longer have a colon.

So your total colectomy quit working?  Right or am I mistaken?  Did you crohns?  God I wish I had a memory...but hope they fix you up real soon...praying for you and all the others.

Going to play Bunko with the gals tonight so it's been awhile since I have been so got to get all pertied...up for them...LOL

Leslie

Posted 4/15/2010 12:49 PM (GMT 0)
Nonna, your problem sounds sort of similar to mine.

I had a sub total colectomy though. And a J Pouch. My surgeon left about an in ch of my colon. Which was a STUPID move. The first several months afte rmy surgery was great. Then the numbe rof bowel movements per day tapered of to only three or four. And they were small.

It is very difficult for me to go now. I can feel the stool there, but no matter how hard I push I can't get it out. Something seems to be blocking it.

I have Hirschsprung's Disease and it looks like that one inch of colon, plus the rectal stump need to go. But my new doctor (my third opinion) is questioning my Hirschsprung's diagnosis. So I have no idea what's going on. I was scheduled for surgery and he canceled it. Said he wanted more information.
Posted 4/16/2010 12:28 AM (GMT 0)
Well hello all my friends! Been a bit under the weather so have not been on here for awhile. My gut has been cramping so bad and been very nauseated. I am so scared that somthing is going to happen to me. That my colectomy is going to fail. Its just on my mind 24/7. That is why I really limit my diet. Anything we can do to prevent this from happening?

Lizzie-So glad to hear from you today. I loved your pic. I would absolutly meet somewhere to meet everyone. As soon as you are healthy enough to go lets plan it. I think we have such a strong bond with eachother, its the best thing that has happened from this disease. Mabey that is why I have it so I could meet all you great people.

Going to go out for a walk. It is a beautiful day and the kids want to go to the park.
Love you all more than you will ever know.
Posted 4/17/2010 1:08 AM (GMT 0)

I am so glad to hear that most everyone is feeling well.  I really think that the best time of the year for me is spring time because I know that summer is right around the corner so that just brightens everything up and atleast boosts my mood which helps me cope more with the pain/discomfort.  Sorry I have been M.I.A for some time now.  It's gotten to be crunch time at the end of the semester in college and I feel like I barely have time to do anything anymore.  Eehh oh well, it'll be over in two weeks, thank goodness!!

I met with my doctor/surgeon today for the last time before the big day.  May 10th, I just can't wait!!! My parents are finally starting to open up to the whole surgery thing, of course because I think they realize they kind of have to be open to it since its right around the corner.  Did you guys have to stay in the hospital the night before and "clean out?".  I thought it was a little strange that the doctor said that I dont have to go to the hospital until the morning of surgery.  He basically gave me the script for golytly with the instructions and said have at it LOL

Counting down the days & praying for all of you,

Amanda

Posted 4/17/2010 2:24 AM (GMT 0)

Hi Amanda,

You are usually given the prep to do at home and show up for surgery the day you are scheduled.  I had the gatorade/miralax/ dulcolax prep which was a breeze except for all the antibiotics I was given; those caused lots of vomiting which made for a looooong night. My surgeon had me start my prep on a Tuesday with clear liquids and my surgery wasn't until Thursday evening; it made for a very long 3 days especially when the vomiting started and then we had to drive 3 hours to my surgeon. In the end it was all so WORTH it because everything has been great and my life is 100% better!

May 10th isn't too far away and I pray that everything will go as well for you as it did for me.   One important thing to do following surgery is to walk, walk and walk some more; and DON'T do things you are not supposed to do: clean, cook, etc.  Let everyone help you, just let your body heal. And above ALL, FOLLOW the low residue diet!!!!!!!!!  It will keep the bowels moving, help prevent blockages and in the long run make your system feel the best.

If you have any questions, ask away, that's what we are here for:)

***Has anyone heard from Hodaya??????  Getting worried; unless I missed somewhere where she said she wouldn't be on for awhile.

Lizzie-So good to hear from you!  I will try to either text or call you this weekend; have a couple of things I have to do and then will come home to rest but will get ahold of you at some point.  Love you:)

I made it through the week; YAY!!!! Only 1 3/4 weeks left; my class and my aides were fantastic!  My students would remind me to sit down if I was standing up and my aides did all of the transporting to and from any place my students needed to go.  Even though I have a challenging group this year, I couldn't ask for a better group; they are very busy but they have such kind souls:) That's why I love my job:)  My pain level is ok and at times not good at all but I have vicodin, percocet, prosed & ditropan that is in my system on set schedule. I pray everyday to help me make it through one more day and to let this surgery work.  It has been a year this past March that I have been dealing with this kidney issue (well actually I've been dealing with it since 1997, but all of the complications & surgeries this past year have been since  3/09)  and I'm praying that I can finally get on with my life in a couple more weeks.  I just want to get back to the simple things in life like cleaning my home, grocery shopping, going for a walk and above all encouraging all of you and being here for you whenever you need someone to lean on.   

Pray for the highest and the best and I always do the same for all of you.

Hugs, love and prayers to all,

Judy

Posted 4/17/2010 2:28 AM (GMT 0)
Today has been horrible day with bloating and severe stomach pain! I am so sick and tired of this.

Leslie, I think I may have the gas problem that you did....the gas gets trapped and the stool can't get out. It has been getting worse and worse.

My defogram is scheduled for Tuesday and I assume I won't see my doctor until May to get the results. shakehead

I will catch up later. Hope everybody is doing well....Tracy
Posted 4/17/2010 2:35 AM (GMT 0)
Judy, you are my hero. I have no idea how you are handling that stent and working. I heard those nasty stents are very painful. OUCH

When do ya'll get out of school? Our last day is May 26th. I hope you can continue to fight through the pain and make it to the last day...and hopefully the doctor can get you all fixed up before the next school year starts. What is the plan if you don't mind me asking?

Tracy
Posted 4/17/2010 2:47 AM (GMT 0)
Amanda, Most doctors do just have you do a prep a few days before. I had a specific diet for four days prior and then used mag citrate and suppositories. Are you having a open or lap? So happy to hear that your parents are being supportive. You will need it. Will be keeping you in my prayers and thoughts as your date gets closer.

Judy, Last I heard Hodaya was having some remodling done in her home and would not have a computer for awhile. I she has been struggling but have not heard from her in awhile. I will try to reach her on facebook.

Tracy, sorry to hear you are not doing very well. It seems like you have been going through this for a long time. Is there at least a plan yet on what you will have done?

Well, have a great weekend everyone!
Posted 4/18/2010 5:14 AM (GMT 0)

Marisa-Thanks for the info on Hodaya; let me know if you hear from her on FB.

Tracy-So sorry that you continue to suffer; you're always in my prayers and I have especially thought about you all year trying to make it through one more school year before you get anything done.  It's such a pain to have to work around a school schedule but I truly understand your dedication; we can't miss time during the school year; not too many people understand it especially when they try to say your health comes first. We know this, but those kids need us.

My dr is hoping that when he takes the stent out on the 29th of this month that everything will be fixed, but the tube in the kidney hasn't been fixed so at this point I'm not very hopeful.  If this last surgery doesn't work, he will put a narrower (if that's even a word lol) stent in until school is out.  We get out of school on June 24th; then he will take off the top half of the kidney this summer and reattach the ureter to the kidney.  He could do it with robotics (he's an expert with that) but he doesn't feel confident with all of my previous surgeries.  (too many adhesions) therefore it will have to be an open surgery.  If I have to have the kidney removed, I may ask if my colon surgeon can remove my adhesions first, then my urologist can do the robotics (possibly a lot less healing time).  So many ifs and possibilities.  I was looking back into my daily planner today and this kidney stuff all started back on February 21st argggghhh!!!!!  Way over a year of this CRAP!!!!!!  and I've had 11 surgeries since that time; I am so done with it!!!!!!  I so want my life back!!!!  A friend was just telling me about a yoga class that my daughters'  old dance teacher is instructing 2x's a week and how it is very spiritual based.  I can't wait to go; plus I would love to see my daughters' dance instructer; they danced from the time they were 3 until they were in tenth grade, then cheering and jobs took over.  Anyway, I would just love to do any form of exercise at this point and not be in pain!!!

Lizzie-Praying that you are doing ok.  Will try to call you tomorrow. Love you.

Really need to go to bed; have to get up early to go to church, might just go to late church :)

Peace and prayers,

Judy

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