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Total Colectomy Part 11

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Posted 6/13/2006 4:02 PM (GMT 0)
I ate a delicious steak last night and I had to get up early this morning to run to the restroom (which I usually don't ever have to do!) The salad probably didn't help either.
Cathy
Posted 6/13/2006 7:46 PM (GMT 0)

Hi everyone

I've read that after the total colectomy you are not able to take "time-released" medications.  My doctor didn't mention this to me and I'm wondering if I'll be able to take like 24 hour allergy medications and similar meds.  Have any of you been advised about this or heard of it?

Thanks for all the valuable information that you all have provided me.  I am finally having some times that I feel almost human again. 

Posted 6/14/2006 2:57 AM (GMT 0)
tongue  Hello All!

Missed all of you. . . Sounds like we are all having similar experiences regarding potential hernias and of course that burning bumm issue.  I am six months post reversal ileostomy and I, too, was having lower right pain where the ostomy used to be when I had a bowel movement.  I had my six month post op reversal ileostomy visit on 06/01 and my surgeon checked me for a potential hernia.  He said everything looks fine; how many times am I having bowel movements.  I replied, it all depends on what I eat.  I became lactose intolerant since my reversal so I use Smart Balance Butter, Peanut Butter, Oil, Soy (vanilla) Milk, etc.  Every three weeks, I try foods that went through me real fast and caused me diarrhea with a burning bumm.  If it still didn't agree with me, I would come back to it later.  Any way, I haven't gained any weight since my reversal.  Unfortunately, I lost every pound I gained for the reversal to take place which was 28 lbs.  I am 113 lbs @ 5'4.  I drink 6 to 8 20oz of Propel Water a day.  When you start feeling a burning bumm coming on try calmine lotion and vaseline.  I know it sound weird, but it helps.  My surgeon asked me how my hemmorrhoids were and I told him that the prescription didn't help me and I tried by process of elimination vaseline and calmine lotion and he laughed.  He said whatever works.  At the end of November or beginning of December 2006, I will get the scope again to make sure all is well in there.  As long as I am still having at least 2 - 3 bowel movements a day is great.  It is far better than being 100 percent constipated and in chronic pain day in and day out.  Remember, don't let it rule you, you must rule it now.  The tables have turned and now it is time to take charge of you life for the better!

I am glad everyone is doing much better.  Take care all and have a great week!

Angel

Posted 6/16/2006 2:28 PM (GMT 0)

Hi Everyone..

I have arrived in Cleveland..Had testing yesterday and met again with surgeon...scheduled for sometime Monday will get exact time today...I am so curious how the surgery is done...If done lap and I am in the OR with the right equipment the surgeon said he will tape the procedure for me..neat.

Feel nervous at times but I guess that is expected..I hope I am the first surgery that day and not the third.  He said I will be in hsp for 2 to 7 days depending on how thigs go but does not want me to leave for new york until at least the 25th/26th but he will better advise me..If I have D or if something just doesn't seem right I am to call or e-mail him and he will adjust things to control the situation...Very accomadating and I brought in a whole page of questions and he answered all and then some..never came across that before usually you are just rushed out....so far the Cleveland Clinic has been very good and hopefully I will say the same thing on 6/20/06 too..

Take care

Phyllis

Posted 6/16/2006 3:29 PM (GMT 0)
Hi Phyllis,  I will be thinking about you and sending positive thoughts your way!  I'm sure everything will be just fine!!  I just wish I would have done this 20 years ago!!!

FOR THOSE OF YOU WITH BUTT BURN!!!!!!!!!!   Run, do not walk to your nearest pharmacy and have them order you a tube of CALMOSEPTINE.  It is not a prescription, but is ordered through your pharmacy.  I tried it and it was instant relief.  I mean instant.  I ordered 3 more tubes.!   

    Let us know how everything goes Phyllis.

Posted 6/16/2006 9:28 PM (GMT 0)

Hi Mom

Thanks for the good wishes...

Don't forget 20 years ago they probably were on a learning curve for this condition...Bless all those who went ahead of us....

Posted 6/17/2006 5:01 PM (GMT 0)

Hey everyone,

sorry i've been off here so long.  I need to go back and read all the posts to get upto date on everyone.  Hopefully some of you still remeber me.  I had my appointment with the surgeon on Feb 9 of this year.  I had to go through a ACBE, Anal Monemetry, and defacography.  I had a real hard time getting the Defacog. appointment. There is only a few places in florida that does them.  I had to drive two hours away to get it done.  My Surgery was finally scheduled and is over.  It has been a rough few months.  WE were in the process of moving when my surgery date came up.  I had my subtotal colectomy done on May 12.  Surgery took 6 hours. I had a rough time in the hospital.  I had a blood infection, and a inner ear infection. I was seen by doctors that work under my surgeon, I finally seen him just before I was released.  It was by pure accident that I got to see him.  The other doctors told him that I was doing great and the wound looked wonderful and that my discharge papers were done.  Dr Marcet hit the wrong floor number and was half way to my room when he relized it so he decided to check on me anyway.  It was a good thing he did.  I had a wound infection.  My incision had a lump in it the size of a baseball.  The night before a two year resident Dr said it looked like the wound was infected and she would have the two drs that was on call to look at it and take care of it.  Both Drs came in and assured me that it was not infected.  That if I started spiking high fevers to call Dr Marcet and he could deal with the wound infection in the office.  They said I shouldn't worry about it that the wound was not infected.  Dr Marcet was fuming when he looked at the wound.  He said it was infected and told the nurse that was on duty that any idiot could of seen it was infected. He kept apologizing to me and said he would take care of the two drs that was in that morning and said everything was ok. 

I am a month and a few days out from surgery.  My husband is still packing my wound.  It is just about healed up. He said once it heals it will reopen again for about a week then it will be healed permenantly.  I had a deeper layer open than what he opened up.  Its a area he explained that the fluid your body is to absorb passes through.  He said the human body is like everything else, if it has a easier way to go it will take it.  He said that is why it will reopen the inside layer will not be healed before the outside area and the fluid build up will cause it to open.

For any of you out there that has not had the surgery, My situation is abnormal from alot of the others on here.  Please do not base your decision not to have the surgery on what has happened to me.  If I had to make this decision again and was told I would definetly go through what I just went through would I do it again. MOST DEFINITELY!!!!!!!! The way I feel being able to go to the bathroom out weighs anything I had to endure. Listen to the girls on here the really know what they are talking about.  I'll sign off for now and will be back later.

Mary

Posted 6/18/2006 1:26 AM (GMT 0)
Hey everyone,

Just been reading back to past posts. Catching up on everyones progress. I have alot of watery stools and d also. I have hems also what I use to help me was suggested by a pharmacist. I use tucks medicated pads first than I use Aveenos anti itch lotion after. Between the two it takes about 20 minutes to settle the burning and itch down but it does work. For those of you suffering with the bloating and pain especially with eatting vegtables my doctor told me to take beano with everything I eat that causes bloating. I was craving a ht dog and I never knew they would cause bloating. I took the beano and the gas and the pain subsided. My surgeon told me beano would now become my best friend. He said it would not hurt to take it with meals that I haven't eatten since before the surgery that way it will prevent the gas before it gets started.

Some had questions about the abdominal pain before a BM. I had it really bad and as time goes on it does get better. AS to the eatting I'm still expierencing with food myself. I have found that if I eat something and it has trouble going through if I take a walk, along walk it moves everything through my system. The dr told me to take colace but I didn't really care for it. It did help clear what was causing the pain but it also seemed to have along term effect on my colon. I ate 4 hours after taking it and clearing my system and I started having whole food pass through my rectum that hurt. So now if i'm in pain from what I ate I walk. Its a slower process and it is uncomfortable to walk while in misery but it does seem to get everything moving.

talk at everyone later.

Mary
Posted 6/20/2006 6:30 PM (GMT 0)

Hello everyone,

I know its been a while since I have been on but after my surgery , I had an infection in the wound it hurt.  Then had to have dental work done ugh!!! Now this week I am back to work , it feels good to be back. I still have D too sometimes , but most of the time my stool is pretty solid.  I don't have to take any thing if I drink plenty of water , I go. No problem.  It's great feeling better. I didn't realize how sick I had been all of this time, I just figured it was normal .. who would of thought.  I do still have pain that comes and goes and burns in and around my belly button any one ever had that ??? Other than that everything else is great!!!  Sorry it took so long to get back on ...Hope everyone is doing great.   I read thru some of the earlier postings it sound s like everyone is starting to get back on track...

Later

tweety110968

Posted 6/22/2006 5:35 AM (GMT 0)

Hi Everyone,

I know it has been a long time since I have written, but after my total on May 16, I also got a wound infection that my husband had to pack for me.  It scared me, and felt like one of those things you would never imagine seeing on your own body.  Mary J, when I first saw you mention yours, I truly felt like I wasn't alone.  Mine is just about closed, but still has to be covered with gauze because it leaks.  Also, I don't see how it will close up smoothly because the inside almost seems to be blossoming out.  I was told this was normal, but am still confused as to what the final result will be. Sorry for any of you with weak tummys, but we talk poop, so I was hoping it would be okay. :-)

It is after midnight and I need to get up early with my daughter, but wanted to catch up and see how everyone is doing.  I promise to write more, and for those of you who don't know, I am 5 weeks out from the surgery.  He took out 5 1/2 feet and stated that was quite long.  I lost 20 lbs right off the top, and am still losing daily.  I don't mind though because I had some baby weight (she's 2 now, for those of you moms that catch my drift) that I still needed to get rid of.

I'll write more tomorrow and let you all know how my procedure went.  Thanks for caring.

~Larinshine

Posted 6/22/2006 2:04 PM (GMT 0)

Hey guys!  Larinshine the first day after I was discharged from the hospital I started throwing up and the pressure split my incision wide open... very messy and icky/gross.  I had to pack it and dress it for a long time.  It did finaly heal, the scar is wider than I wanted it to be and crooked... but who cares... it healed and my guts work correctly... I wasnt planning on wearing a bikini anyways! :)

Hugs,

Emma

Posted 6/22/2006 2:23 PM (GMT 0)
Larinshine,

Glad to hear from you. Mine wound is just about closed also, but since I have that deeper area that opened up my husband still has to try to push 1/4 inch sterile strip guaze in mine. My surgery said he also took 5 1/2 feet out. he said the large colon is approximately 6 feet long and the last 6 inches is concidered the rectum that gets left for the small to get attached to. I have lost 36 pounds so far. Which is really ok with me. I was a little over weight and I am now in the weight area I should be in for my height.

Cathy- Glad to hear your last surgery was much better than your first two. Sorry to hear about the skin adhereing to the muscle. You sure had more than your share of problems getting your large removed. I sure would like to hear from you.

Ladies and gent I hope no one got offended by me complaining about those two drs. I have the utmost respect for Drs and Nurses. I am totally happy with my surgeon. He did a wonderful job. Was just not pleased to be assured everything was ok by the two when it was not.


Emma- How is school going? Have you already finished and got your degree? Congrats on getting engaged.

to everyone else glad to hear everyone is healing. In the beginning it seems like a slow process but by time you get to 4 to 5 weeks everything seems to ease up. I still get really tired out and hope my energy level starts to pick up soon. I also hate not being able to sllep all night. Sometimes I wake up to go to the bathroom but mostly I wake up to a dull ache and have trouble going back to sleep.

Talk at everyone later.
Mary
Posted 6/22/2006 3:21 PM (GMT 0)
Hi everyone,

Has anyone ever had a buring sensation at the top of the incision, it stings, not sure what it is. I am glad to hear everyone is doing ok. I too have lost about 40 pounds since surgery and still losing , not able to keep much on. I had surgery 4-10-06. I wondered if that actually stops eventually. I am at an ideal weight , well low end of the spectrum for my height and structure. Don't care to lose much more. Any ideas on what to do please let me know.


Thanks ,

Tweety110968
Posted 6/22/2006 7:07 PM (GMT 0)
Good to hear from you Larinshine!  I was wondering about you! 

     Ok everyone,  I must be doing something terribly wrong.!!!!!!!!!!  I have only lost 10 pounds and would like to loose about 5 more.  Are all of you not eating much or why do you think you are loosing all this weight??  Please help!

Posted 6/22/2006 7:10 PM (GMT 0)
mom23

how are you doing since your surgery ?? i I started back to work and haven't had much time to write. Hope all is well. I have posted a couple of times before this and no responses have come in. I will try to get on again soon.

tweety110968
Posted 6/23/2006 1:34 AM (GMT 0)
mom23,

I lost most of my weight in the first couple of weeks after surgery. My surgery was 05/12/06. Iwas released from the hospital on 5/17/06 and the whole time i was in the hospital I ate a total of 4 bites of Jello. The 4 times I tried to eat that first bite tasted nasty and I got nausiated so I choose not to try anymore. I lived on flat sprite that week to keep from getting sick. I also ran fevers all week so food never really crossed my mind. I still have trouble with some foods so I still resort back to soft foods. I'm in no real hurry to eat alot of foods that I ate before surgery. I miss them but in no hurry. I eat alot of chicken. I have beef once in awhile but find it is still slow moving through. I tried turkey burger and I don't know what happened with that but it took me a day and a half to get that out so I will definetly not eat that. I thought I was having problems because I hear so many of you guys eatting regular foods and my surgeon said everyones body reacts differently and just keep introducing new foods if you have problems stay away from it for a week and try it again. He said eventually your body will let you know it is ready for it.


Talk to everyone later.

Mary
Posted 6/25/2006 5:44 PM (GMT 0)
Hi Everyone,
I haven't posted for awhile, but wanted to let you know how things are going for me.
First, I want to thank all of you for talking so freely about this probem. How the surgery has helped and the complications that some of you experienced. It truly helps me know what to expect. Even if it doesn't happen to me to know it might happen is truly so helpful. It makes me aware and lets me know what questions to ask the surgeon. Thank you all for your assistance.
I'm one who has not yet had surgery. I went to see my GI doctor on 6/20/06 and informed him that the Lubipronstone (Amitize) did not work for me. Made things easier but not more often. Also my GI doctor at the VA hospital said the Chief of the hospital would not approve me going to another facility for the Colonic Pacing. I guess it is to experimental. But they will do the surgery to remove my colon. Informed him I wanted my next appointment with the surgeon moved forward from September. While I was waiting to hear from the surgery department, I called my normal medical care facility and asked my medical doctor to send me to the GI doctor there. I went to see him and he finally agreed that I had a problem. After 10 years of complaining. I showed him the test from the VA hospital. So I also have an appointment to see their surgeon. I have an appointment on July 13. The nurse told me to take two fleet enemas the day of the appointment because they would do an Ultrasound. Not sure what that will show. Do any of you nurses/medical personnel know?
I received a call from the surgery department at the VA. I need to call back to schedule. I will inform the surgeon I have tried a few more items since we last spoke and I think surgery is my only option. Actually, I have two options, 1) continue to suffer the rest of my life, or 2) do the surgery.

Mary - you have had surgery and you mentioned that you had a hot dog the other day that made you bloat. I haven't had surgery yet and hot dogs do that to me now. So you know what food I will not eat after surgery.
Again, thank all of you for such great information. I will keep you posted if I get scheduled for surgery by either medical facility.

resa
Posted 6/27/2006 4:48 AM (GMT 0)
Please forgive me for asking this again, but I didn't understand the instructions I was given before. I was wondering how I can get to Total Colectomy Part I.  I want to start reading from the beginning.

Thanks in advance!! 

Posted 6/27/2006 4:51 AM (GMT 0)
I forgot to mention something in my last post.  For 'burning bums' and hemorrhoids, I take a product called Hem-Relief (can get it online - cheapest on ebay I've noticed) and it saved me from agonizing pain and hemorrhoid surgery!! This stuff is amazing, and I feel like if it helped me it can help anyone. Just wanted to spread the word b/c it really helps! tongue
Posted 6/27/2006 3:30 PM (GMT 0)

KAP-  On the ostomies main list page, https://www.healingwell.com/community/default.aspx?f=33

at the bottom there are pages of the lists that you can scroll back to.  We're on part 11, and they count backwards, keep scrolling until you find part 1.

Cathy

Posted 6/27/2006 5:38 PM (GMT 0)
Cathy, Thanks so much! I'll give that a try.
Posted 6/27/2006 5:46 PM (GMT 0)
Okay, I went to the page you linked, but I can't scroll back b/c it says I'm on page 1.  Not sure what to do??  Sorry to be a pain here. 
Posted 6/27/2006 6:56 PM (GMT 0)
Where it says "Forum Page Listing"-
go to page 2, then 3, then 4...
Keep going backwards until you see "Total Colectomy Part 1"
You have to look at all the listings on each page, if you go page by page, you'll see the pattern. Keep going, the first/original is there and there is alot of good info in those posts.
Posted 6/27/2006 8:20 PM (GMT 0)
Cathy, thanks for that - I understand now.

Thanks so much! tongue

Posted 6/27/2006 9:57 PM (GMT 0)

Hi Everyone

I had my surgery laparascopically on 6-19 and was discharged on the 25th..Still gurting and swollen bu 1 vicodin everry 5 hours seems to hold me....Have been sleeping a lot which I guess is good for healing.

Considerin g startin g the trip from cleveland back to new york tomorrow...will see...

Hope everyone has been well

Phyllis

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