Total Colectomy PART 3

Hi Ladies :)
My surgeon sent me to colon motility specialist before I had surgery and he really hammered home the fact that this is drastic surgery--chaning your anatomy is not normal, he said. The alternative he gave me was to have a diverting ileostomy. He would leave the colon in place, but it would be useless becasue there would a stoma at the end of the small intestine so a bag would be necessary. You keep your colon so at anytime the surgery can be reversed or if works then one can go ahead with the total colectomy.

about the NG tube--I did not have one when I woke up from surgery. It wasn't until a few days later that I got really sick and the doc realized my digestive tract wasn't waking up that the nurse put the NG tube in. I guess different surgeons have different ways of going about the post-op recovery.

Hey MMA--the hospital did the same thing to me--called me the day before with the surgery time....very inconvenient!

Cheryl--There is always a chance that this surgery might not work completely, i still need to take Miralax, but now, Thank God, the Miralax works :)
I had all the same concers as all of you are expressing--everyone has a slightly different outcome from the surgery you just have to make the decision to go for it or not. My husband and I decided it was the best thing for me since my life (and his) revolved around my aching abdomen.
Not to sound like a know it all, but it is a risk, b/c no one knows how exactly your body will adjust to having no colon. The motility doc gave me a whole bunch of studies to read on the quality of life after a total colectomy--in every study at least 90% of people were happy that they had the surgery. Some still needed mild laxatives and a few had some incontinence issues, but the vast majority were very pleased with the outcome.
If you do a google search on "quality of life after total colectomy" some of the studies should come up.
Avery, I am [email protected] hope I am allowed to post my email????

Thanks Saramarie for the post on what the quality of life is after surgery. I will definitely check it out. This is definitely what I am worried about most, and what my surgeons wants me to really think about. My husband too thinks I should definitely do because of the chronic pain I am in, but I just am SO nervous I might have bad results. I feel positive that I will be in the 90% but I just dont know. I cant imagine dealing with incontinence at 35!! I am now keeping a log every day to record how I feel, so that by the time Mid August comes I will feel more confident to make the right decison for me. So far I have been sick every day!! Thank you for being so honest about your experience. It really helps to hear both positive and negative so that you are not going into something blindly.
Thanks MMA for the info. I am originally from NH, but unfortuanately I think VT is a little far from NV : ) Your are SO lucky. I cant believe in Vegas there is no lap surgeons for this.
Thanks Christina for your words of encouragement too. : )

Gingy - I had FIFTEEN 1 liter tap water enemas to get cleaned out... and I still was not completely cleaned out.  After the colonoscopy it was 12 full days before I had ANY ounce of BMs.

My appt is Tues... I am excited! 

Hugs,

Emma

Hey everyone! Hope all is well. 

Emma, I am a nurse.  I worked Med-Surg for a few years, but now am very happy working in a large family practice office.  It is very different than floor work, but gosh, the hours are so much better!   As far as time off from work goes, I was in the hospital for 6 days total.  Post-op day 2 I had postop ileus which sent me into a 2-3 day vomiting fiasco.  My doc ordered an NGT but I couldn't handle it, you know, there was just something about a tube down my nose that I couldn't handle. I had an epidural for pain relief at first, but I had a reaction to the meds they were giving me and had to give me Nubain to stop my itching.  Finally they switched me to a morphine PCA, but I rarely used it.  I wasn't in that much pain, just sort of sore and uncomfortable. When I was discharged, I saw my surgeon for follow-up 10 days later to check my incision.  I did not have laprascopic so my incision is about 6-7 inches starting below my belly button. My surgeon used no staples or sutures on the outside, everything was totally under the skin.  I was out of work 2 weeks recovering and then went back to work. I still got tired easily, had to rest, but overall totally back to normal.   

Like I have said before, it honestly has changed my life.  Everyone says I have more color to my skin now, more energy. 

MMA, I am also 26 years old, so I know what you are going through.  But I'm telling you, it is sooooo worth it!

Zoe!! Hi! Welcome Home :) Sorry to hear to had complications--I got the NG tube the same way--au natural, not exactly the most pleasant experience, but isn't sooo gross and kinda cool how much crap gets sucked out of your stomach--I felt better immediately then was fascinated by watching the container fill up over and over again as my stomach got smaller and smaller........
I hope it wasn't to painful getting the line to your heart--I had the same kinda of TPN feeding, Crazy how they can feed us, isn't it? Our hospital experiences sound very similar....but it's so good that you're home...doesn't it feel go good to be in your own surroundings again and have a nice bed and your own clothes. You were in hospital a long time, but I am glad they watched you for two days. I ate breakfast and then they let me go home after eating only one meal--they served me lunch but I couldn't face it -- too naseous, but they let me go home anyway....

How do you feel now besides loopy from the drugs? Are you eating OK? Soft diet? or just liquids???
So happy to hear that you're out of the hospital and on the road to recovery:)
Take care and keep us updated--you've been in all our thoughts the past two weeks.....
Ciao
Sara

Oh my god you are too funny... about the hair, man my legs were so itchy from all the hair.
I can't believe you lost so much weight even on the TPN....I was on the TPN for 9 days and I lost 10 pounds. I'm only 5' 2" so going down to 90 wasn't so bad, but my face looked so skinny--you could see my cheekbones, still had cellulite on my butt tho hahaha--too bad I had to lose all the weight in my breasts and face. Well, I've gained 5 punds back in 4 weeks and I think it's becasue I drink protein shakes in between meals--Ensure or I make a soy protein shake in the blender or those Naked or Odwalla brand protein drinks too, but those are pretty expensive. Anyway, they seem to good on my stomach esp. the soy drinks--they seem easy to digest, and it's a good way to get a cushion back on those bones :)
I still can't eat a full meal without getting super bloated so I kinda graze all day.

Emma!  That would totally be fine with me.  My Email is [email protected] 

It totally is different being under the care of nurses when you are a nurse yourself, you are definately a much harder patient to deal with.

Hope you get to feeling better Zoe!  Everything will soon be getting better, just takes time.  Sometimes it felt like I ate 1-2 bites of food and felt so stuffed.  I'm still sort of the same way, I can't eat very much at one sitting, but I am hungry in about 3-4 hours after.  Makes sense, I guess because I am getting rid of breakfast and lunchtime!  Kind of gross, but, it beats not having a BM for 2 weeks and putting up with all of the cramping!

Hey Zoe--I had a hard time sleeping at night for the first two weeks--and I triend not to take naps during the day, but for some reson I still couldn't fall asleep at night--What kind of pain meds do you have? I didn't want to take Vicodin so I bought some Excedrin PM or Tylenol PM and it seemed to help me sleep--even if only for a few hours. I would take it at 10 or so and be awake by 1 or 2 and up the rest of the night, but at least it helped some.
I never went 15x a day either.....now i do b/c of the Miralax, well more like 10x.
You're not venting.....coming ome from surgery and seeing what your body will do is all a big mystery--so ask all the questions you want.
Take care
sara

Hi Avery,
I live in Chicago...where did you have surgery? Hope you're having a great 4th.
I have been having the worst stomach pains for the past 3 days so we had to cancel our trip to Wisconsin--we got 3 hours into the drive and I was in tears so we turned around......my poor husband. So I've been on the board a lot the past few days--just reading--don't want to complain or scare anyone. Anyone had this much pain 6 weeks out of surgery? I have ben doing OK up until now, bad gas pains here and there, but they have gotten less frequent over the past few weeks--went to emergency room once for pain after 2 days I couldn't take it anymore.
The pain seems to come every 2 or 3 minutes then lasts 30 or 40 seconds then i'm OK for a few minutes again. Strange, but I don't want to go to the ER b/c my last bill from a few weeks was $11,000 --so I am waiting to call my GI tomorrow--the surgeon said she's done with me as the surgery looks fine and there is only a small amount of scar tissue so from now on I should talk to my doc.
Words of wisdom anyone???

Zoe - its important that you are able to askk questions and get answers from this board while you are recovering.  Never be afraid to "vent"!

Sara - you should see your doctor.  ER is a great and all/but they only deal with emergencies.  If they cannot find soemthing glaringly wrong, they will always send you home.  Talk to you doctor about it!  BTW where in Wisconsin were you going?  I live in Wisconsin :)

Only a few hours before the doctors appointment.  I have never been so anxious/excited/nervous for a doctors appointment in my LIFE.  I am so afraid he is going to dash my hopes for surgery......but i guess no sense in worrying about it!

Hugs to all,

Emma

PS.  This is the BEST board I have ever found!  You ladies provide an invaluable tool!

Just got back from the doctor's office (and a short impromtu shopping trip) and I am a happy duck!  So, I get the office and I realize that I forgot my xrays (the one thing I was supposed to bring) and I almost started crying.  Just all the stress about the doctor and then I thought I ruined everything.  So I meet the nurse, and she is great we discuss things and then I met the doctor, did the exam, and then he talked with me.  I thought I was in trouble when he came back with a educational pamphlet on fiber, but he only briefly talked about it and then stopped.

So, he all but said surgery is a go!  I have to do the proctogram first, but he said that if that is normal then we are probably set.  No surgery date yet, but it was mentioned end of July.  So, he talked about the prep, the surgery, the post care, and diet.... so my guess is that he thinks surgery is a go!  He did mention that he has some patients who have the same problm who manage it with liter enemas every other day... I said I didnt think that was a good way to live.  His other famous quote "People have died from surgery, but no one was ever died from constipation."  LOL he said this very nicely though... but obviously he has not experienced this in his life.

So, I have to prep for the proctogram... but I did convince them to try a different prep.  I am going to try a combo Miralax and visacodyl 2 day prep... lets pray this works!  I would love it if this would work... then I wouldnt have to have Go Lytely.  The surgeon also talked about having me spend a day in the outpatient center to have enemas all day to get cleaned out... LOL sad to say but that sounds like a good idea!

Sara - I am sorry you are still feeling sick.  Be careful with the coumadin what else you take with it.  Lots of drugs interact with the coumadin and you dont wanna do yourself some damage.  Some things actually make your blood thinner... and some things make the coumadin not work! I am sure someone has already told you... but be careful about over the counter pain relivers too... advil and ibuprofen are no no's.  Take care and let us know how it goes!

Oooh last but not least... the surgeon said he does not do laproscopic... but he does use a small incision.  He said I would be in for 3-7 days.  He said I could get a central line placed for IV access... and he also said that he believes in epidurals... WOOO HOO!

Hugs to all,

Emma

PS>  Sorry... rambling! :)

PPS> I know right where Eau Claire is... I am very close to Green Bay myself!

Emma, I'm so happy for you.  It does sound like your surgeon belives that the the surgery is right for you.  My doc said the same thing about open vs lap.  He just doesn't do lap because you are under so much longer.  I had an epidural too, in addition to the general and then they left a needle in my back and fed the morphine directly to the area in a drip form.  I also had a button I could push every 15 minutes if I needed more.  Just be careful that they don't keep you on that stuff for too long.  I think that's where my problems started.  The doctor told him my organs were narcosizing (?), shutting down - hence, I landed up with the tube down my nose and a five day setback.

Sara, let us know what happens.  You're in our prayers.

Zoe

Good luck MMA, I hope everything goes good and a speedy recovery.  I am getting excited just to have my 2nd opinion in two weeks.