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Total Colectomy... Part 12

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Posted 11/14/2006 6:39 AM (GMT 0)

Sorry I can't help with the continence problem - I had had absolutely NO symptoms when the GI found my cancer.

Lots of great docs in the RG Valley!  I've been truly blessed.  Let us know if you find a solution that works for you ... has your diet changed?  more stressed than usual?  Adequate fluid intake?

:-)  

Posted 11/15/2006 3:14 AM (GMT 0)
Hi Everyone,
I had my followup visit with the surgeon this afternoon. We discussed the manometry results and went over the sitzmarker x-rays. He said I could have the surgery. I will not be able to get scheduled until January 2007 but at least I know I will get a date. He will be out of the country for ca. 6 weeks. He will be going to Africa for some kind of medical exchange and will not return to the United States until end of December. He said that I would probably be the only surgery performed on the day I have my surgery. The operating room will be mine for the day.
Posted 11/16/2006 5:58 AM (GMT 0)
yeah  Yeah, Resa!

So there is a light at the end of your tunnel now.  Wonderful!  Congrats!

Wmnak: my diet is bland nothing with a side of tastless otherness.. lol  I am moderatly hydrated also.  I think maybe that since I was COMPLETLY inert before, that I just don't have the muscle tone to hold anything in.  My pelvic floor was great according to the tests, but I think the fact that I never had to hold it waiting to go potty before has made me less able to do it now..  Maybe?  Possibly?

Other than that I don't have a clue.  Grrrr....

Posted 11/20/2006 10:17 AM (GMT 0)
hi all,

 glad everyone seems to be going well, i go in next tues the 28th Nov, so i am a bit nerves, oh well i had a relaxing holiday so now just the op and all should be ok, so i will talk to everyone when i get out i hope talk soon                      Holly

Posted 11/21/2006 1:58 PM (GMT 0)

Hi Holly

It's normal to be nervous.  Just think that there is no other choice.  You have tried everything to make the situation better.  You have had every test under the sun to make sure it was not anything else.  You have a good rapport with the surgeon you have chosen and most of all he believed you.  Go in with a positive attitude, it makes the world of difference...best of luck

Phyllis

Posted 11/23/2006 4:54 PM (GMT 0)
Hi Everyone,

I had my last biofeedback session for this year. May be approved for more after surgery. Anyway, the bio nurse gave me a diet to follow. It has Foods that may increase odor, Foods that may increase gas, Foods that usually thicken stool, Foods that loosen stool, and Stay Away From Asparame/Nutrasweet. She does not recommend the Low Residue Diet. Basically, you can eat any food that you can tolerate. She also doesn't recommend the use of Tucks. She said they have a drying affect. No toilet paper either. The nurse said the wiping motion could cause skin tags. She says after you have your BM you should put your butt under warm water and wash the residue away with your fingers. If you have a snake neck shower hose use it. The nurse also recommended that I buy a TOTO travel washlet for away from home. She gave me the website where it can be purchased (WWW.WASHLET.COM/PORTABLE.ASP), in case anyone is interested. She also recommended that I buy a Control Ball and Band for exercises.

Oh, did any of you have a problem with your body temperature being too low. I am so cold all the time. My temp ranges from 95.3 to 97.6. I use two thermometers. I wanted to make sure one was not broken. Even in summer on the hottest of days I do not sweat. Did any of you have this problem and did it clear up after surgery? I started to monitor my temp after one of my doctor appointments when the nurse took my temp and it was 95. She took it on three different thermometers and they all read 95. This sounds unbelievable but it is true.

Hope everyone is enjoying their Thanksgiving Day.

Sorry for the long post. Again, enjoy this day.
Posted 11/24/2006 10:28 AM (GMT 0)
Hi all,

   thanks Phyllis, i have been so cool about all of this untill the last few days and now i am as nervous, it's all so real now, they told me i would be in 7-10 days so i will talk when i get out i am still going into this not knowing the whole deal but i sopose no-one can know everythig, i know they have to cut from top to bottom and there is no keyhole here for me wheather thats just something that is not done in Australia or if a total colectomy can't be done by keyhole, i hear everyone talking about different things and i havent been told anything about my diet after, what to eat and what not to eat etc, what is bio feed? i have never heard that at the doctors here, anyway i am just babbling on now proberly cause i am getting nervous so if i don't talk to you all before Mon i will talk to you all in a few weeks takecare all

 

 

 Holly

Posted 11/25/2006 10:12 PM (GMT 0)
Good afternoon!  yeah I hope you all had a wonderful Thanksgiving.  This is my very post and trying to learn how to navigate into it.  I had a total colectomy September 20, 2006, due to my having colonic enertia.  I am recovering steadily - but slowly.  I still am on the roller coaster of diarrhea and then constipation and so on.  I was hospitalized three weeks ago for one week due to total dehydration.  I was given potassium via IV for that week and did feel stronger after that time period.  While I work out of the office at the law firm for which I work, I also maintain an office in my home and, against my doctor's advice, have been working almost 7 hours a day on my laptop - but I am working out of a recliner and have situated my laptop to make it more comfortable so that I do not have to sit straight.  I have tried to work from the Firm office for about a week; however, after about 4 hours, I simply cannot stand sitting straight up any longer.  Luckily I have an understanding boss.  Diarrhea has visited me again and now am having to go at least 14 times per day without warning - going back to my doctor on Monday.  I am so thankful to have found all of you.  I had no idea you were all out there.  A reunion sounds wonderful. 

Oops!  Gotta go  I'm sorry.  I look forward to "talking" with you all soon.

Sunshine Mom  tongue

Posted 11/26/2006 8:50 PM (GMT 0)

Hi Sunshine Mom

Glad you found the web site.  It is really helpful to read all of the other parts if you haven't already done so.

I was going 15-20X a day for 3 months after surgery.  The surgeon recommended that I take metamucil which I did in capsule form and now, I go about 8 times a day.  Sounds like a lot but for now I am happy considering what I indured for years.  You may want to ask your doctor about it.  It helps with both diahrrea and constipation.  You have to remember to be kind to yourself and don't undertake anything that is going to wear you down.  Good luck and welcome..

Phyllis

Posted 11/27/2006 6:20 AM (GMT 0)
Good evening, Phyllis. Thank you so much for your reply to my post. Your Metamucil suggestion sounds like a great one. I forgot to mention in my initial post that when my surgeon began to remove my colon, he discovered that my colon had become some large that it had "swallowed" my spleen! Can you even believe that??? Needless to say, my spleen was removed as well as the colon. He mentioned that could have some affect on my recovery period. You are right about taking care of yourself. I know that I am "shooting myself in the foot" by working so much; however, the biggest case we have been working on will be over tomorrow and I plan to lock the laptop, hide the phones and rest!

I am so sorry that you have been going through all of this for years. I can tell you that I would much rather go through this than suffer the pain and agony I experienced before surgery.

Well, I look forward to "talking" with you again soon. Time to rest. Thanks again@
Posted Yesterday 2:34 AM (GMT 0)
Hi ,

I can't believe I found this site, well actually my husband searching for some understanding of my procedure found you...I am having a total colectomy December 14th and am hoping it will be the best Christmas present I could ever receive.  My surgeon is doing it laproscopic, I've been trying to find as much information as I can...sometimes that's not always a good idea. If anyone has some insight I could really use it.  What I've been reading in the forum has been so helpful!  I've been struggling with the vicious cycle of laxatives for 20 years. I'm ashamed to say I take 30- 40 laxatives a day, sometimes with results and sometimes not.  It was just a little over a year ago that I finally convinced a GI doctor to help me. My transit study told the story, and I was finally told it wasn't all in my head. I guess I was a little scared of the whole thing and put off schedling the surgery now I have spent another year in misery and have added vomitting to the mix.  I've been vomitting this horrible thick bile almost every night since October, I'm so weak and have been running fevers off an on, I'm losing weight and trying so hard to just make it til my surgery day but it's really taken a toll on me.  Has anyone had anything like this?  

I hope everyone's recovery is going well...Thank you for sharing you stories

KLH 

Posted Yesterday 2:52 AM (GMT 0)

Hi KLH,

I had a laparascopic colectomy with ileorectal anastamosis at the Cleveland Clinic.on 6-19.  I was hospitalized for 6 days which was the first day I had a BM.  I had very little discomfort as I had a pain pump and did not wait until the pain was bad.  On the 9th day my husband and I started to drive back to NY (2 days).  Although initially I was going 15 to 20X/day, I now go around 8 times a day.  I eat everything however, some foods do not get digested.  I had over 30 years of suffering with constipation.  My sitz marker test showed that after 6 days I still had all markers in me.  I can honestly say that this was the best thing I have done.  No more pain, my abdomen is nice and soft and each day I feel better and better.

Hang in there.  Ask any questions and I will be happy to answer from my experience.

Phyllis

Posted Yesterday 4:13 AM (GMT 0)
Hi Everyone,

Welcome to KLH and Sunshine Mom. Hope this site gives you the information you are seeking. I have not had my surgery yet, but my surgeon also said he would do it laparscopically. He said hospital stay should be two to six days.
Posted Yesterday 6:07 AM (GMT 0)
Hi, KLH from Sunshine Mom.

I am so sorry you have been suffering so long. Just like Phyllis said in her reply, you will feel SO - O - O MUCH better when you have had your surgery. I am curious, KLH - have you mentioned to your family doctor or surgeon the taste of bile, weight loss, fever and weakness you are experiencing? I started having those symptons two weeks before my surgery. My physician explained to me that, as a result of those symptons, he was rescheduling my surgery for an earlier date. Those symptons could mean that your colon is becoming very enlarged which is not good because you could become "septic", meaning that bile is seeping into your system. I don't mean to scare you but please discuss these symptons with your family doctor and especially your surgeon. One thing I learned during my ordeal was to alert my physician to any minute change of any nature going on in my body.

Good luck on your surgery and PLEASE keep us posted on how you are doing. Call your physician. Sunshine Mom
Posted Yesterday 9:27 PM (GMT 0)
Hi Sunshine Mom,

Thanks so much for your advice, I put a call into my doctor right after I read your note. My husband has been saying all along I should be taking it more seriously.

Actually, I went to my primary physician three weeks into the episodes thinking I might have the flu, the things that were happening were so different than anything I had experienced before, honestly I didn't think to connect the two until the fourth week of no change. I had blood drawn every three days for the next 2 weeks because I was experiencing a huge drop in my potassium level, I think he was trying to associate the way I was feeling to that. It wasn't until the end of October that I started thinking there might be some connection and I met with my surgeon to schedule the surgerye, I did tell my surgeon, he felt that maybe because of all my problems that I was backing up some but he seemed to dismiss it. I haven't however, let him know I'm still struggling with it. I will now though.

Your words of encouragement mean so much. I will keep you posted. KLH
Posted Yesterday 9:46 PM (GMT 0)
Hi Phyllis,

I'm so glad to hear you have no regrets, and you sound like you're doing great. I hope you continue to get stronger and healthier and happier... I wish that for us all!!!
Thanks for taking the time to talk with me. Take care of yourself. KLH
Posted 12/3/2006 5:03 PM (GMT 0)
Good morning KLH.  Thank you for your response.  Please be STEADFAST with your surgeon and do NOT allow any short cuts in having you properly diagnosed.  Do NOT take no for an answer until your health situation is resolved.  I had to be SO DOGMATIC AND STEADFAST to finally get my surgery.  Good thing too because when they began my surgery, my spleen was rupturing and I would have been dead in 20 minutes if they had not removed my spleen. The reason my spleen ruptured was because my entire colon had expanded to the circumference of a small can of soup and had literally swallowed up my spleen and the spleen could not "breathe" and it therefore ruptured.

This is SERIOUS STUFF - BE STEADFAST, KLH.  Do not let your doctors take it lightly.  Originally, my surgery was not scheduled until October 9th but I insisted it be done sooner due to my severe pain and the feeling that I was going to literally explode in my abdomen area - which, as it turns out, I was!  Thank God they arranged my surgery for September 20th and that my surgeon was so good and immediately so the trauma I was in with my spleen and removed it.  Cat Scans, MRIs and the other diagnostic tests showed no signs of trauma with my spleen - so you have to know that all of the diagnostic tests available do NOT reveal everything going on in your body.  You know your body better than anyone else or any diagnostic test - so please rely on how YOU feel.

I thank GOD with every breath I take that I survived this.

Once again, be STEADFAST!  Don't mean to scare you; however, this is nothing to take lightly.

Let me know how you are doing please.

Posted 12/6/2006 2:16 AM (GMT 0)
Hi Sunshine Mom,

Oh My Gosh!  That's incredible. You definetely had an angel looking out for you.

I saw my GI doctor on Thursday and was in for an endoscopy yesterday but I have to wait for my ultrasound until Friday. 

My esophagus is swollen and full of puss, he's not sure if it is the result of all the vomitting or one of the reasons.  He took several biopsies.  My surgery is next Thursday, and I'm trying to hang on until then.  I had a horrible episode last night of vomitting but felt okay after it all passed, and I have felt pretty good all day today. It's just doesn't make sense. 

What were your symptoms? 

It's funny that you said that about all the technology, I just said that today. I'm sure they won't figure it out until they're actually in there. 

Thanks again for your help and concern,

KLH

Posted 12/6/2006 2:49 AM (GMT 0)
tongue  Hi, KLH, you are so right - I did and do have an angel!

I never experienced the amount of vomiting you are - and never did my esphogas have a puss fillup. 

My overly-intense abdominal pain, extended stomach and abdomen and excessive vomitting began 3-4 weeks before my surgery; however, I NEVER experienced the amount of vomiting you have.  Have you been checked for dehydration.  If not, you should be because, IF YOU ARE OVERLY DEHYDRATED the day of surgery, your surgery could be delay until you have been given fluids through the IV to get your fluid level to normal.  Just another thing for you to check on.

Again, please keep me posted.

 

Posted 12/6/2006 3:09 AM (GMT 0)
Good evening, Holly!  tongue I hope this finds you recovering nicely and comfortably from your November 28th surgery.  When you feel like it, please let us know how you are doing.

Good luck!

Posted 12/7/2006 3:12 AM (GMT 0)

Hi!  I have been reading these posts for the past few months preparing myself for my upcoming surgery (total abdominal colectomy) on January 17.  I have truly welcomed the information regarding the different experiences. I began having problems 7 years ago following a hysterectomy and the removal of 6" of my colon. The physician feels some damage may have been done either during surgery or do to the endometriosis. My life has been miserable,  and I have tried every medication known to man, as well as every home remedy, but nothing has worked.  The only test that I "failed" was the sitz marker (all 24 remained) so I had no other choice but surgery.  This was in August, but I had to postpone my surgery because my husband was unable to help me due to his rheumatoid arthritis and recent heart attack.  Now, that he has recovered, it's my turn.  Aren't we the pair!

 I do have a few questions, as I am getting quite anxious the closer it gets: When do you return to a normal diet, if ever?  Is there an initial weight loss following surgery?  How do you handle returning to work if you are still going numerous times a day?

Thanks to everyone who has been so thoughtful to share your experiences in order to help others!

Tracy

 

Posted 12/7/2006 4:21 AM (GMT 0)
Good evening, Tracey.  Let me begin by saying you are going to feel so much better after your surgery.  Once I returned home from surgery, I was allowed to eat just about everything I wanted, excepting salads and other greens.  You can expect lots of diarhea (spelling?) after your surgery and that is to be expected if you are having a total colectomy because uour food intake has a very short path to output.  Your food will go directly from your stomach to your small intestine and almost immediately you will expel it. I work Depends for about two weeks since there was no advance notice that I woud have to go again.  I highly recommend that.  Your small intestine will eventually realize that it is doing the work of the large intestine. Your doctor will most probably give you a prescription to control the diarhea.

As far as work, I was technically away from the office for 8 weeks; however, as a paralegal, work has to go on even though my boss was understanding.  I luckiy have an office at home so I was able to work from home.  I returned home on a Monday from the hospital and by Thursday I was working from home.

I have as it turns out prolonged my recovery due to my working.  I did not get the bed rest required and to this day, I am still very weak and have a short window for getting much work done.

We are in the middle of a large case.  It is to ge settled next week and I am then taking two weeks off for complete bed rest.

I wish you the best and hope this information helps,  Please let me know how you are doing.

Posted 12/7/2006 11:52 AM (GMT 0)
Hi Everyone,

I have been up since 2:30am. My gut is having one of its episodes. So far it is day 3 for this round. Last time was around July. My gut is always in discomfort, but these rounds of excuriating pain come every so often. I just keep thinking soon it will be over. This week I received a Jury Summons. It states I need to call in the weekend of the 20th of January. I do not need anything coming between me and my surgery. I called the scheduler to see what my date will be but she said to call back on Dec. 12 that she did not have the schedule for January yet. Since I have not been scheduled yet I do not know if the court will allow me to be excused. In an hour I need to start to get ready for work. I need to keep my sick leave for after surgery so I work with this pain. I have an office job so sit at home in pain or sit in the office in pain. Pain pills do not help - it is one of these waiting games.

Sunshine Mom - wearing Depends after the surgery is what I have been thinking of doing when I return to work. Glad someone else thought of the same.

Sorry for complaining. Hope everyone else is doing fine.
Posted 12/10/2006 4:03 PM (GMT 0)
Hey Resa...  are you feeling any better yet?  I remember the days of literally being doubled over with pain..  it gets better you know.  I hope yours has passed, and maybe its the LAST attack ever!

Also... why dosen't your Nurse recommend Low Residue Diets?  I haven't exactly followed mine perfect, but I find it gives me alot less trouble than any other diet I have tried.  What diet are you following now?

And.. why not toilet paper?  B/c since my surgery I have developed little skin tags around my rear where I wipe and they HURT like the Dickens...  I had no idea... I have tried those little personal cleansing cloths but they have some kind of foofy fragarance in them that burns, and stripping and hopping in the shower aren't exactly feasable solutions either...  I have never read about that anywhere.  Hrmm...

And as for the body temp thing, when I was getting mildly septic before my surgery and for a while after (about 6 weeks) my temp was WAY low.  like 95-96 like yours.  Doc said it would pass and it did..  something about loweing the temp to reduce infection, I didn't understand but que sera, it is gone now anyway...

Hope all of you out there are healing well

 

Posted 12/11/2006 5:45 PM (GMT 0)
I just found this site and there is a wealth of information but I still have many questions.. After total colectomy is there a tendancy to gain or lose weight? Can a person have laparscopic even if they have had other abdominal surgeries? if they say you do not have to have a bag is there any thing that can go wrong during surgery that would then require you to have a bag? I know that you will need to go to the bathroom more frequently but is it controlable? I look forward to any responses.
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