Total colectomy Part 15

Shellypoo, my heart breaks for you. Your post brought tears to my eyes. I am so sorry that you are going through such a painful experience. I am sure the Lord knows of your suffering. When I was in the hospital (the third time this year) and having some VERY very painful tests, I wondered how Jesus Christ must have felt suffering in the Garden or being nailed to the cross. Here I was begging for the test to end and you were begging them to take you back to your room. However, Christ allowe himself to be beaten, abused and nailed for everyone to see. This thought gave me strength. I felt that if He could suffer for me, then I would try to be strong for Him.

I hope you believe in Christ and these comments are not offensive to anyone. And I hope this brings you as much comfort as it brought to me.

Amey

Amey-yes, if it weren't for my walk w/ Christ I wouldn't have made it.  I am a Pastors wife, too.  I think it has somehow made it a bit harder though, knowing the right thing but feeling so bad. Thak you for your prayers.   Dana-the gastric pacer is just an idea.  Dr. Abell is one of the top docs for this.  He thinks it will help mt small intestine to function.  I m leary about this but he isn't.  I have alot of nausea but my stomach actually empties fast not slow.  I have had an NG tube while in the hospital and I hate every minute of it.  I have severe ear pain, it affects my sense of smell and believe it or not makes me more nauseous.  The doc suggested the g-tube (which I know nothing about ) becasue it would be there if I need it.  I really don't want anything else that could get infected or cause problems.  The PICC line and TPN are enough for me to deal with.   My neurologist called yest. and is running a blood test for some antibodies that I thought was related to my intestinal stuff but after reading about it online it has to do with myasthynia gravis.  I certainly hope I don't have that, too!  It has nothing to do with gi stuff that I could find.   How do the folks  with the pacers do?  Did any of them have any intestinal involvement?  Thank you also for the prayers, I truly need them.

Adviceseeker, as I sat at work today I started to feel how fortunate I am, instead of how worried I am. I am having my colectomy on this August 8th (my birthday, too). I have been going back and forth between hospitals, urgent cares, and all kinds of doctors for the past year. My colorectal surgeon is supposed to be one of the best, so I just need to put my trust in him (and ask for lots of sleeping pills and pain meds, too!) I have to admit, I don't like pain; however, I don't like looking pregnant either (when I'm not..) Maybe, this will be a whole new world, I'm already changing the way I view life. After going thru this, most stuff doesn't seem so bad anymore.

If the first 24 hours post-up feels like being hit by a truck, maybe my belly will deflate?

Seriously, I hope that you're feeling better each day. Also, I admire you for being able to get out of bed and e-mail each day. If you work, do you have any idea how long you will have to be off of work? This is the forever nagging question. My boss keeps asking if I have an idea, and I keep telling him that it depends on how I fare. I've been walking during breaks at work, and every evening with my husband. I'm hoping that all of this walking before surgery, will help while I'm healing.

It's good to hear that you can rest comfortably. Take lots of time for yourself right now, and make sure that you have support around to pamper you. It sounds as if you deserve it (If we can put up with our colons for so long, we can put up with stretching out being pampered for as long as it can last, too!)

I also have a rapidly emptying stomach and low to normal motility in my small intestine but i am scheduled to have my entire large intestine removed in 2 weeks, do you think that will affect my results?

i hope everyone is feeling ok today!

Hi Everyone,

I am new at all this.  I have so many questions and need answers.

I had a Total Colectomy in Feb of 2007 which was a horrible experience.

The nurses gave me my sleeping pills during the  day, and they wanted

me to get up and walk around, but all I wanted to do was sleep.  I ended

up with a tube down my nose, which was very painful and a pic.

They also gave me a heavy sleeping pill which made me not to get up in

time to get to the bathroom, I would call the nurse to help me, but they

wouldn't come for 10 min, which was too late, I peed and moved my bowels

in my bed.  When they finally came they were pissed that they had to

change my sheet and  gown.  Finally I asked for a camode next to my bed.

Which helped alot execpt they would never come to clean it out.

My husband stayed with me for two nights, he was a better nurse then

the real nurses.

That's pretty much my horror story.

Next come the real problem, I did not have a job before the surgery because

of pains of being so bloated and I wasn't able to go to the bathroom.

Now I go to the bathroom approx 10x a day, how am I suppose to get a

job with them asking why am in the bathroom more then at my desk????

I can't stand all this crap...............

Any one have any ideas

Apri 

April,

I am so sorry to hear that your hosptial stay was so horrible. You may want to consider filing a complaint with the hospital.  This may sound a little dramatic but your situation and lack of care should be documented and heard by those who are in position to correct the problem.  However, I think much of this type of care is typical.  I have had 3 major surgeries and each in a different hosptial (all surgeries where colon related) and each hosptial has been a disappointment.  Just recently when I was in the hospital for 9 days the nurses constantly forgot that I even existed.  I would call for hours and never have anyone come into my room.  Finally, I would try to get out of bed, walk up to nurses station and ask for help.  I did this almost every single day.  When I was in the ICU I had blood on my sheets for three days and no one changed my bed.  Also, when I was brought into the room there was some blood on the floor (which belonged to someone other than myself).  Every day I asked for someone to please clean this blood.  I was in the ICU for 5 days and the blood was still there when they moved me to another room.  I filed a complaint against the hosptial. 

I truly hope that your bowel habits get better and you have a quick recovery.  While you are at home, try to walk if you can.  I was slow at first.  I remember the first time I went for a walk...it took me 16 minutes to walk a mile and there was a cute elderly couple who passed me while I was walking (they were walking faster than me).  I was a little embarrassed but determined.  Soon I was walking 3 miles a day and at about 4 weeks I could run a little. 

Adviceseeker, my stools are difficult also.  I drink 8oz of prune juice with each meal and I do not eat any wheat products.  This helps a lot.  Have you tried prune juice? 

April,
You asked how I was eating...I am probably not the best person to ask. My diet is so selective because of my motility disorder. It most likely will never get better. I pretty much eat the same soft foods every day...eggs, tuna, jello, apple sauce, and fish (no pasta, breads or wheats of any kind, no dairy, no red meats). My husband made pork chops last night and I ate a half of one for dinner with a small side of apple sauce. My stomach felt sick all night. I felt bloated all night. This morning I got up early and biked about 20 miles to help my stomach feel better and that worked.

As far as my complaint, I have not heard anything from the hospital board. I just filed it last week so it might take a couple weeks to get a response.

How have you done since your colectomy? You had it in Feb, right? Is your diet ok? Are you feeling like you have good BM's now? Do you feel that the surgery has benefited you?

 

Hi Kimber 

I hope everything goes well with your surgery.  If the guy you are with does not understand

what will being happening then he is not the one.

I've been going through this pain for about a year with severe conspition, I wouldn't go for

a week or two.  My doctor said I colonic interia, and that the surgery would help.  my dad

had crohs and he only had 7inch of his small intesines and had a ielostmy.  He had so

may problems he was given he last rights 9x.  the doctor cut him open so many times

my mom lost track.

So when it was my turn to have the surgery I was so scared because I did not want

a bag like my dad.

My surgeon said I would not have a bag unless there were complations.  Thank god

I didn't. I feel for all of you out there that has one.

Any way take it from some who knows first hand, after the surgery you need to start

moving around to get your system going or you will be in the hospital longer then

you should be.  The time is about 5 days, I was in there for 13 days because I didn

not want to get out of bed I was in so much pain, I ended up with a tube down

my nose, which was not fun............

I will pray for you, let me know how you do.

              April

Hi, ladies.. It seems like we're all in different stages, but all are experiencing or have experienced the same things, so we all share a HUGE common bond together.

 

Since I found this forum, I have been more upbeat and feel like I'm more prepared to have my colectomy surgery.  I made my descision to have this surgery over the telephone with my surgeon, and have been scheduled for almost the past two months.  I had eight solid days of testing, to help my surgeon give me my alternatives.  I've probably been able to talk to him for about 20 minutes total, so you all are a blessing.  Up until a few months ago, I didn't even know what a colectomy was.  A  different doctor told me that I needed a colostomy.  I have colonic inertia and sphincter problems, so I really didn't know what a colectomy was or how to expect my hospital stay to be.

 

I feel like I know each of you, because I continuosly read your bulletins as often as time allows.  I'm keeping a running list of all of  your suggestions, and I think that I have 5 pages so far, from ointments for sore bums, to gum, and nutritional low residue diets after surgery.

 

I was really worried about the ng tube, so I called my doctor.  Another doctor called me back and said that it would be taken out during surgery, unless I had complications.  That was a little bit of relief, and I am so ready to have bowel movements again.  I can go for a month without having any movement.  The only way that I can do anything is to have 4-5 warm water enemas.  I now that I have to be toxic.  My poor husband can help me with his eyes closed, now..

 

My co-worker is going thru everything that I have gone thru, and you, too; however, she doesn't have the same medical insurance as me, and I pray that she can have a doctor that will provide her with the options and care that she needs.  She too has been diagnosed with colonic inertia, but is just beginning the process of trying to get appointments with specialists.  I ran my cell phone bill up for months, trying to get someone to listen to me, and finally help me.  When I complained of constipation, my cries for help, and hers, have fallen on deaf ears.  Our GI doctors where we live, still do not understand. 

 

Again, I am so grateful for this sight.  My surgery is scheduled for August 8, so I am counting the days, hoping that they'll go by soon, before my tummy bursts.  I am so gassy, that I have 2 air fresheners hidden in my office, and still feel like everyone can smell me.  It's been horrible, but I hope to feel better soon.  Also, after all of your advice, I will walk as soon and as much as I can.. I've made that promise to myself.  I don't really handle pain very well.

 

April

I am so sorry to hear about your dad it must have been hard for both your mother and your father to go through so much. Its great that you had the surgery when did you have it and how is your recovery? The guy I am with is very supportive of the surgery I am so lucky to have such a great man.

Phyllis
What is "flexible sigmoidoscopy" and why do you need to have it.

I hope everyone is doing well.
Kimberly

Phyllis,

Have you had your sigmoidoscopy yet?

Amey

Phyllis, Here are your words before the sigmoidoscopy "there is no sedation meds because it really is a no big deal look.."

On Aug. 20th, I will be very interested if this is still your opinion...LOL. I had mine and this is not the way I would decribe the procedure, but maybe I am just a big baby when it comes to things like this. Please, please let me know how it goes.

Thanks,
Amey

My surgeon is on vacation till the 24th which happens to be the same days as my appointment to let him know wether or not I wont the surgery. I am inpatiant so I called the office and told the nurse I wanted to go ahead with the surgery. She said great instead of talking to him on the 24th she scheduled my pre op for that day and the surgery will be August 2nd or the 9th. The surgeon had mentioned maybe taking the day off on the 2nd if he doesnt then its the 2nd if he does its the 9th. I am so nervouse I know I want it done but I just fear complications.
Kimber