Total colectomy Part 15

Hi guys,
I am VERY frustrated, mad, angry, upset...
I am almost too tired of writing, but I thought I need to vent! I saw a surgeon today, mostly because I have been feeling much worse the past few weeks, and I thoght I´d ask him about a defecography and other tests.
Well, to keep it short, he listened to my story and said that he´d like to speak to the head surgeon of the clinic about my case. Unfortunately, this head surgeon was a doctor whom I had contacted abou two years ago when he was at another clinic. So it all started again: They kept on saying that I was still anorexic and that surgery would not help at all. They told me to eat normally again so that my body would get used to food again and everything would start working...They also said that havinga transit time of more than 144 hours and only going once-twice a month was normal when you are on tube feedings.
They said surgery could kill me and would only make everything worse. I should work out a regimen of laxatives and other procinetics.
I was sooo upset that I cried afterwards! At least my mom was with me and she did support me a bit, although i know she doesn´t really want me to have surgery either.
What is making me really angry is the fact that I didn´t go there to get surger straight away - I actually went there to ask them if they could do more tests because I just have been feeling sooomuch worse lately. I am not able to go at all, and even if I take 10 Dulcolax AND MOM, I am not able to actually eliminate anything. Since I have never had a defecography, I thought this might be a good idea, but the surgeon just looked at my stomach, examined it with his hands and said:" Well, you are constipated, but it´s not an ileus(obstruction)." GGGRRRRRR!!!
I am tired of going on like this, but I am also tired of seeing doctor after doctor after doctor...and everybody is against surgery and keeps on telling me to eat "normal" and use drugs.
Well, thanks for listening and I hope everybody else is doing better than I am.

DANA - Big HUGS to you!!!  My heart goes out to you sweetie!!  I'm sure you are down in the dumps, feeling like no one is listening or willing to help you out!!!  Don't lose hope - I know that's easy for me to say, but maybe - just maybe, the time isn't right for you.  Michelle has a great suggestion in my opinion.  Maybe it is best to go another route at this point. 

Do any of the doctors overseeing your case now believe "eating" is in your near future?  Dana, this is a HUGE surgery and you need to be in optimal shape in preparation for it.  If your body is weak and undernourished....it's best to hold off until you are healthier!!!  Please take to heart what the doctors/surgeons are saying...this may be life threatening to you AND/OR make your situation even worse than it is right now.  Just look at what Michelle has been thru post-op (severely malnurished due to the lack of absorbtion of nutrients and protein).

MICHELLE - Nice to hear you're doing somewhat better.  Boy, you've sure been thru a lot!!!!  Big HUGS to you too!  I also pray that you NEVER have to go thru this again.  Being so sick and close to death.....that's scary!!!!!!!!!!!!!!!!

I hope you're able to eat something soon and be home by the end of the week as well!!  I'm so blessed that I didn't have these problems because my colon was also stretched and full for a very long time (40 plus years).  Just recently I found out that my small intestine is on the "lazy" side (my transit time has decreased significantly).  Hopefully incorporating the MiraLAX back in to my daily routine will prove beneficial (so far so good). 

I hope ALL others are doing good and hope to hear from you soon!!!!

 

Hi All,

I came home from the hosptal Friday morning but I was already having severe pain with nausea after only being home a short time.  I had eaten a little bit of solid food the day prior and that morning and lunch (small amount of oatmeal and then 1/2 a sandwich).  Home health came out to instruct on TPN and I was so sick I couldn't focus and then started throwing up while they were here.  My hubby called my doc and she said either be readmitted or see if home health could give me phenergan and morphine.  The company that would supply the drugs said it would be several hours so I opted to try a phenergan suppository and it didn't do anything...I had a very long and sick night.

 

Yest. I spoke with my doc and she said to see if they could bring the meds then and if not back to hospital.  She said no food for several days.  The home health nurse was able to get the company to bring the meds and I finally was able to rest.  I also changed the TPN from  12 hours to 20 hours running time because I had severe diarrea the night before as well as feeling restless and just "off".  The nurse also gave me a bolus of saline solution, I  was dehydrated.

 

Needless to say this is not over yet.  My doc doesn't know what to do, she now thinks it must be related to my MS and I must be in a big flare or the progression has affected my stomach and small intestine more.

 

I am feeling better having slept all night.

 

I am hungry but cannot eat but today I have to drink fluids as I am already feeling dehydrated.  I am off my Avonex shots until all this is straightened out.

 

Thanks for all your care and concern.

Hi everyone, this is the first time i'm ever writing on one of these so i'm not sure how it works. i am scheduled to have a total colectomy July 31st and am starting to get nervous. i am 23 years old and have had pretty much every possible test leading up to this, including trips to the mayo clinic. i'm really nervous about what will happen after the surgery. can anyone tell me about changes in weight, bathroom etc? i'm worried that it will interfere with work and my social life but i know i need to have it done. also i heard you can gain weight? any help i'd appreciate it!!!!

RESA - Thanks so much for the info you supplied ROSE with!!  Great stuff to share!!!

ROSE - Welcome!!!  Like RESA said, this is an awesome place to gain information.  I personally think you should go back SEVERAL "parts" of this forum to get as much info and you possibly can.  Educating yourself and seeing all the different healing processes from everyone is very, very beneficial.  It is time consuming but well worth the time.

Your fears are well warranted - this is a huge surgey and recovery process.  Although we've all had the surgery (or most of us), you can and will see we're all different in our healing and recovery time.  You're very young and I think that is on your side!! 

My personal experience is that I felt like I was ran over by a train the first week post-op.  I don't mean for this to scare you - honesty is the only way to go here.  This is a HUGE surgery and somewhat lengthly recovery.  It was a good 12 weeks before I began to feel "normal" again and a full 16 weeks before all the soreness and tenderness went away in my abdomen.  My surgery was also done laparoscopic, I went home from the hospital on my fouth day post-op, I didn't have any drains to take home with me - as you can see - no one is alike - some here had longer hospital stays, some had more pain than others - the list goes on and on.  That's why I think you should go back to past "parts" of Totoal Colectomy and get as much info and you possibly can before surgery.

The bottom line here is that I would have this surgery again in a heartbeat, no questions asked!!!  It was worth EVERYTHING I went thru to get to where I am today.  My story goes all the way back to when I was 15 months old and I'm now 44.  My surgery was 11-09-06 and I'm down going anywhere from four to eight times a day to once, maybe three times a day - Sometimes only once a day.

My sugeon did advise me that once our small intestine gets used to playing the roll of the colon - the possibility of transit time could decrease which held true for me.  It takes anywhere from a full year or so for the body to completely heal and regain some type of normalcy. 

I lost 30 pounds within the first three weeks post-op - I've regained eight pounds back - somewhere in the 16 week post-op period - and I've been holding since.  In the beginning your appetite decreases and your tolerance for certain foods play a roll (not to mention the weight of the colon itself that's removed). 

Don't think of this surgery as "altering" your life in a negative way.  Yes, you may go to the bathroom several times a day for the first few months, but can you honestly say your social life is good at this point in the game?  If you're like the rest of us here, you're more than likely bloated and looking pregnant, not to mention the pain and discomforts of being constipation. as well as, all the toxins our bodies are retaining from a non-functioning colon.  We're literally sick because of constipation.

For 40 plus years I NEVER knew what "normal" was and I will ALWAYS gladly welcomed every bowel movement I have - no matter how many times a day I go.  This is what I consider a new lease on life!!!!!

Well, I guess I've rambled on enogh.  Like I said above, GO BACK to previous "parts" of the Total Colectomy thread where you will find a wealth of info.  If anything, go back to at least "parts 10 or 11"

I wish you all the luck and I hope you continue to post here.  This is a great place and the people are WONDERFUL!!!  We try to encourage anyone facing or going thru this and try to answer questions in a real and truthful way.   

Rose- I had my total colectomy almost 8 weeks ago and it was "open".  I had an NG tube when I woke up from surgery and I now know that was a life saver, it kept me from being as nauseous.  One thing- the ng tube may make your ears hurt-it has both times I've had one.

 

For me, I had an "accident" in the hospital because all of a sudden in the middle of the night my bowels started to work (about day 4).  I bought panty style depends and also the extra long Kotex maxi pads (overnight) and the stayfree ecxtra long thin overnight.  You will need to wear some protection.  Make sure they put the disposable pads on your bed.  I lost 12 lbs. post op, I was not overweight to begin with.

 

The diet is to go slowwww...Start with starches (potatoes, rice etc..) pudding, soups.  Add other foods in as tolerated.  I still cannot eat icecream or red meat.  I was not lactose intolerant before surgery but seem to be now.

 

I continue to wear a pad everyday.  I really didn't have any accidents after i came home form surgery but I always felt like it was very urgent to go.  Right now I'm dealing with more serious bowel issues and have had many "leakages" and thank goodness for the pads!

 

An update-I'm still on TPN, no food until the end of this week.  I pray there will be no problems once I start eating again.  The surgeon still doesn't really know what is causing this, she feels either MS or something they haven't figured out.  I have a call in to the gI doc at the Univ. I saw here, his nurse told me he seems interested so maybe he has an idea.  I am still very tired and weak, still have diarrea dispite I'm only having an occasional popsicle or water!  I have gained back 4 lbs. so far. (I had lost 7 more in the hospital last week)

Rose,

TPN is an IV nutrician feeding, it goes directly into my vein.  I was in the hospital for 2 weeks recently and was malnourished due to my small intestine not absorbing nutrients and also I have had lots of watery diarrea.  I"m sure MS has played a role in my recovery.  The surgeon doesn't really think all this has to do with my colectomy, but it could be because my small intestine was so backed up from constipation before the surgery and it's having a hard time recovering.  Don't fear this...I am quite an oddity with most everything I have!

 

I was in the hospital for 9 days after the colectomy.  My scar is vertical and healed terrifically, it goes from sternum to below my hysterectomy scar.

 

My inability to eat is due to all this recent illness, I end up with a partial bowel obstruction, severe abd. pain, nausea and then bad diarrea.  I am going to start back tomorrow trying some soft/full liquid things and pray there are no problems.

Take care, I hope I answered you ok!

Hi everyone,

 

Please Read And Help If You Can.

I have not posted in a while, but I have a question.  Does anyone have a problem with dehydration after your surgery?  I had a total colectomy and ever since, I seem to have a problem staying hydrated.  I do not have an excessive amount of loose stools a day (about 5-6), however, the doctors say that I am evacuating my electorlytes through my stools.  I was rushed to the hospital for the second time this year for a lack of electrolyes.  My potassium, magnesium, sodium, and blood pressure where so low that I went into cardiac arrest and was in the ICU on life support for 5 days.  The doctors did every test they could think of and could not find the cause of this illness.  They finally came to the conclusion that I was dehydrated from my stools.  I drink about 90 ounces of water or gatorade a day.  I am not sure if the doctor's theory of dehydration is accurate or not.  So I thought I would ask this forum.  Does anyone else have an elecrolyte embalance from your loose stools?

Thank you,

Amey

Hello.  I recently found this site and am so thankful.  I am unable to have a bowel movement without doing a warm water enema four-five times, and I am scheduled to have colectomy surgery at Cleveland Clinic/Ft. Lauderdale in a month.  I am scared and cannot find hardly any info at all about it. 

 

Can someone tell me what the average sick time off work will be?  My doctor said that I would be in the hospital at least five days, and then need to stay in a hotel for five more days, as I live ten hours from the hospital, and cannot move so soon.

 

I am afraid to wake up from surgery and not know for sure how I am going to be.  Did any of you have the same nervous feelings?

 

I am younger and worry about having loose stools while at work.  Are they something that you are able to have advanced warning with, or are you on the run to get to the restroom?  Also, I am on a preventative for UTI's.  Does anybody know how a colectomy might affect having UTI's?  Also, I hate to ask, but does having a colectomy change your sexual relationship with your spouse?

 

I would like to hear from anybody who has gone thru all of this.  I would really appreciate any advice that you can give me.

 

Thanks..

 

 

Flbutterfly- I feel like I am just like you! I am also young (23) and have the same exact worries, have you gotten any more information? My surgery is in 2.5 weeks, I'm nervous. Will yours be open or lap? I was wondering if anyone knows if they cut through your bellybutton for an open procedure?

Also i know its personal but I was also wondering about the sexual side effects.

Thanks again!

Hi all and hi to the new members here,

I ve just had a partial colectomy two weeks ago and surprisingly all pains are gone, i m back on foot doing everything i did before and intensive sports too!

I was in for colonic inertia and when they went in (laparoscopically) they saw my colon was around 2meters long, which is huge..Also it was full of adhesions and was twisted all over the place. They took out around 1m80 of it, which made the surgery 5 hours long!

The first 24 hrs were the toughest eventhough i slept most of it..Then with pain killers everything is manageable!

To rose and butterfly, DON T WORRY :) I got sh** scared too, but it s not that big after all! Think of it as a regular surgery, without complications it s no more than that..

To everyone else, I have a BIG question..I had 3 bms post op, nothing running or watery though, and then it went to one and now it s once a day but quite hard to pass..(the beginning)

Does that mean the doctor did NOT take out enough and that these 20 cm left are still causing problems??? I would hate to have another surgery and there is NO WAY i will be taking meds again..

best to allxx

 

Hi

@butterfly my surgery was supposed to be 2 hrs long too, but considering the length of my (now past) colon, it took 5.
I got sleeping pills everyday in hospital and it really went smoothly..just the 24 hrs post op I felt like, as someone said here, hit by a truck!

Really you have to go in positive and think that you will never have to feel like you do now again!

I was at 10 dulco pre op which was about two weeks ago and it already feels like a past memory!

Good luck to youxx