Preparing for Total Colectomy

I have been reading everything I can before I have my Total Colectomy surgery sometime in early November. I really have gained so much invaluable information from everyone here that I never would have received from any of my Doctors. Thank you all for paying it forward by sharing your personal experiences!

I am currently living in Dubai, UAE so I am a long way from home in the U.S. My digestive issues started when I was only 12 years old and I am now 52 years old and have suffered in silence from a lifetime of severe constipation and stomach problems.

Until just recently every Doctor I spoke to about these issues either did not believe me or just wasn't interested in helping me end this problem. I have tried everything natural, over the counter & prescriptions to get some relief but nothing works anymore.

I am sick everyday and have no quality of life. I'm so ready to welcome an end to this misery and totally prepared for what ever the outcome maybe afterwards.

I would like advice from members here on what questions to ask at my pre op appointment and how to prepare for what I may need during the post op time in the hospital and at home.

Anything you can share about what to bring to hospital and what to stock up on at home will be most appreciated.

Hiatal Hernia/Nissen Fundoplication 1 Sept 2014
Gallbladder/Gallstones removed Feb 2014, Appendix ruptured May 2013
Kidney Stones, Feb 2014, Kidney/bladder Infection for 2 months not responding to antibiotics Jan-Feb 2014, Kidney Stent, Feb 2014
Stomach/Duodenum Peptic Ulcers confirmed by Endoscopy March 2014
IBS-C & Colonic Inertia since I was 12
C-sections x 3

Thank you for responding Blueglass
My surgery will be open due to all of my scar tissue from previous surgeries.
I am Gluten & Sugar free, plus I only eat low carb veggies.
Basically I only eat fish, chicken, eggs, berries & low carb veggies, is this going to cause issues after my surgery?

Life is good,
Deb

Thank you for the advice about getting measured and fit prior to surgery, I will ask my Surgeon since it has not been mentioned to me yet.
hope you don't mind if I ask you questions to ease my mind a little. I feel like the more information I go into this with the better I will be able to cope with what ever comes up.
I am keeping my rectum
Did you have a NG tube in when you came out of surgery?
How long after your surgery was it before your bowels woke up and started moving?
Did you have any complications after your surgery?
How long was your Hospital stay?
Did you lose weight after your procedure?
Did you have anyone stay with you while you were in the Hospital?

I am so grateful that you took the time to read my posting and For your responses to my questions & concerns.
I haven't slept now in over 3 days because I can't seem to shut my thoughts off long enough to relax and close my eyes.
I truly believe I need this surgery and wish someone would have offered me something more than just repeated laxative and anti- depressants Everytime I had an appointment for the last 40 years.
I will admit now that I have the help available and surgery in the very near future I am scared to death. I think being overseas without any family or close friends just adds to my anxiety even more. I am lucky to have a wonderful supportive Hubby who will be there for me as much as he possibly can even though he can't stand to be in any hospital for more than a few minutes he will make sure to at least come visit me every day.

Deb, glad I know some things that are helpful.

It does sound really hard emotionally. One thing I did a few months before my surgery was take a stress management class.... I wasn't thinking surgery then, was hoping it'd help with my physical symptoms, which it didn't, but it did help me cope w/the surgery. There are some good free and inexpensive meditation and relaxation apps that you might find helpful.... not sleeping is hard on the body....

My family is out of town too, and I kept a carepage, which was a lifeline. I started it on an earlier hospitalization, so it was going.... my partner posted when I was too sick to and then read me the messages. It's very draining to be in the hospital and have to tell the same story to people on the phone over and over again.... so the carepage (or caring bridge) gives some control. I wasn't physically able to get on the computer for about three days though....

My partner also assembled a "surgery book" for me. We invited family, friends, and colleagues to send something to help me feel less isolated after surgery -- I said silly or serious, I'd need them all, and got cartoons, poems, readings, drawings from kids in the family, etc. I didn't look at them until after surgery and it was something I could just look at here and there when I was up to it.... was a really nice thing (and makes me want to go look at it again, still have it....)

Hang in

You've gotten some great answers that pretty much covered everything already, but I figured I'd add in some stuff from my personal experience too just for the heckuv it:

Did you have a NG tube in when you came out of surgery?

No, but like others I almost did but it was due to having an ileus post op. As far as I know they only do them if there is some sort of blockage. I think they also might administer tpn through one as well? But they're not a typical part of surgery or recovery.

How long after your surgery was it before your bowels woke up and started moving?

Two days maybe? I think I was started on ice/liquids around 24 hours post op, and I know it was a little while before stuff started trickling out. I really don't remember for my first surgery. I do remember that very little came out for the first day or two that it was starting to wake back up and it was all liquid/bile.

Did you have any complications after your surgery?

I had an ileus around day 4 or 5. Basically, my intestines woke back up and then stopped and caused a blockage. This is extremely common. In my case I threw up MASSIVE amounts of green gunk and was immediately put back on NPO. Thankfully I didn't need an NG tube to pump out anything else.

While this is a very common post op complication, you can do things to help lower the chances of it. Introduce foods VERY slowly and carefully. Even if the hospital is saying you can eat whatever, take it slow and take small bites of soft, easily digestible foods (and continue with the soft goods for 4 to 6 weeks post op). And chew until it's basically a smoothie consistency before swallowing.

Also walk as much as possible to help get the intestines up and working again. It will be tough and seem impossible at first, but even getting up to go to the chair by your bed the first day will help a lot.

I also had a bladder infection from the catheter after my first op. Again, fairly common, extremely uncomfortable and not very pleasant, but easily resolved with some antibiotics.

How long was your Hospital stay?

They were planning on 5-7 but it turned into 9 as a result of the ileus.

Did you lose weight after your procedure?

Not really. I was 100 lbs going into my first surgery, and was about 140 four months later going into my second surgery. The first time I was so sick and malnourished and dehydrated I don't think I really had anymore to lose.

After my second surgery though I did lose about 10 lbs from barely eating again in the hospital, and also had some issues a week after I was discharged (this was after my jpouch construction though, not colectomy)

Did you have anyone stay with you while you were in the Hospital?

Not overnight. This is really a personal call though. I never really liked having visitors in the hospital ever, seeing me how I was. And I wasn't really sure how I'd emotionally be with the ileostomy. I can say though that I didn't NEED anyone to stay with me for any kind of extra physical help that couldn't be provided by a nurse, aide, or doctor.

I think that's definitely something you can ask your doctor about. I don't blame you for being concerned, vomiting is unpleasant enough as it is and you've certainly been dealt an awful hand. Hopefully you have no problems post op!

I'm really not very familiar with colonic inertia - I assume from it's name the issues all stem from the colon/large intestine, right? Everything travels normally through the small bowel? If that's the case then I don't think you'd be at any higher risk for blockages or an ileus post op (which would lead to vomiting), but that's certainly another thing you can bring up with your doctor.

blueglass said...
My family is out of town too, and I kept a carepage, which was a lifeline. I started it on an earlier hospitalization, so it was going.... my partner posted when I was too sick to and then read me the messages. It's very draining to be in the hospital and have to tell the same story to people on the phone over and over again.... so the carepage (or caring bridge) gives some control. I wasn't physically able to get on the computer for about three days though....

My partner also assembled a "surgery book" for me. We invited family, friends, and colleagues to send something to help me feel less isolated after surgery -- I said silly or serious, I'd need them all, and got cartoons, poems, readings, drawings from kids in the family, etc. I didn't look at them until after surgery and it was something I could just look at here and there when I was up to it.... was a really nice thing (and makes me want to go look at it again, still have it....)

Hang in

Wow. I can't imagine anybody in my life doing anything like that for me. I didn't even get any "get well soon" cards from my family whenever I was in hospital.

Everything I've had to cope with I've had to cope with alone, basically. The hospitalisations, the pain, the fevers of death, and so on and so forth. Forever alone. That's me. All I've got are memories of pain and suffering and nearly dying. Anaphylactic reaction - check; car accident on the dual carriageway - check; toxic megacolon - check. Something the rules prevent me from mentioning on HW - check. Blah blah blah. Nothing but bad memories to haunt me. No love, no affection, no contact with humanity.

And boy doesn't this site rub it in for me. "Think positive" everyone says. I've got nothing to be positive about. Childhood was an emotionally abusive hellhole; I was on the autism spectrum but nobody knew about it. No help from any angle. I'm a bit drunk, which is why I'm typing all this rubbish. But not too drunk that I can't type in proper sentences still. Grammar **** to the end. Yay me.

Post Edited (NiceCupOfTea) : 10/26/2014 6:16:22 PM (GMT-6)

I started my Sitz marker transit test on Sunday and have been worried sick that I will now have a bowel movement on my own. I haven't pooped in 3 weeks and now it's Tuesday evening and I just passed 5 little rabbit pellets! I have an Xray Wednesday evening and Friday evening then an appointment with my Colorectal Surgeon on Saturday morning.
I can stay constipated for over 6 weeks or longer without laxative overdose SO WHY NOW IS MY BODY FEELING THE URGE TO POOP NOW!
My Surgeon believes me he just needed this test as medical proof for my insurance before he schedules surgery.

Deb, a lot of us who have had IBD found that our bowels started behaving better before surgery.... after years of diarrhea, I started having formed poop a week before surgery... wild. It's like the colon's last stand or something. I thought it was the stress relief of not working and having made a decision... but then I thought that back to regular life would mean back to all my symptoms. Hope your test goes well.

NCOT, makes me sad that you had to go through so much alone. Hoping it won't always be that way for you.... hang in.

Ugh, sounds awful.... hang in.