Protocolectomy is May 7th - Please help calm me down!

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Regular Member

Date Joined Jan 2006
Total Posts : 449
   Posted 5/1/2009 12:05 PM (GMT -7)   
Had my pre-op on Apr 24th. It went well. I LOVE my surgeon and I'm extremely comfortable with him doing the surgery. He has consulted and/or worked with Cleveland Clinic and also Ferguson Hospital (back in the day!). My great-aunt is a surgical tech, and has sort of held my hand through this too.

I handle pain really well (don't all we Crohnies tho?), but I'm TERRIFIED of the pain. I told my surgeon if he's going to have a 95% chance of opening me up fully, then don't waste business putting incisions in the corner and just cut me open. He said the procedure is more laproscopic assisted then laproscopic. He said if any of my colon looked good near my small intestines, he'd give me a colostomy, but I frankly told him I'm not sure I'm comfortable with it just because my colon has always given me fits, but being that I have Crohn's, they are very conservative with my digestive track, so to speak. He said surgery was roughly 2 hours, and he'd have another surgeon with him. When I woke up, I'd have the bag, a drain in my rectum, and an IV. They also said the recent studies have shown that starting food faster actually heals you faster. So, they will start boost or liquid diet on day 2 and not give me an NG tube. Which I'm excited about, but again, TERRIFIED of.

And, then the usual surgery stuff.. fearful of anasthesia not working and me somehow feeling the surgery.. scared I won't wake up...scared something will just go wrong with it.

This is a HUGE surgery..but I also know to keep my eye on the prize because there is a huge huge potential I could go MED free, and have a long-lasting remission...but I have a little girl at home..and I'm just scared of all of this!

I was fine until today. Then I realized I have less than a week to get all of this together! I've been working hard on everything...but I still can't believe it's almost here.
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Remicade, Failed Clinical Trial ABT-874/Aisle 12, Failed Humira. Onto Tsyabri. If I fail that, total colectomy.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 20 months old

Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 5/1/2009 12:18 PM (GMT -7)   
ok eaiser said than done, but slow down take a big breath and calm down!
Make you a list of all the things you are going to get to do because of this surgery and when you get scared read it! You will be amazed how much better that makes you feel.
It is gonna hurt, im not gonna lie, BUT it wont hurt for long, and crohns would hurt forever!
Food will be your friend after surgery, not your enemy, so look forward to that eating, even if it is nasty hospital food, lol.
I dont know about the drain i didnt have that, but i can tell you something about the bag, if you havent seen this before. And i may have already said this, but this is the one thing i wish someone would have told me.
You will have a clear bag on, and the stuff that is in there is going to be this god awful bright green stuff that smells like death warmed over and killed again! thats just because its bile. Once you start eating real food, it will change colors and the smell wont be near as bad. then when you get home you can wear a cloth covered bag and you wont have to look at the stuff. I didnt know that and i thought that was gonna be the way it was forever and i was freaking out!

anyway, its gonna be alright, you are gonna be healthy andhappy! and whenyou wake up you will immediately feel better, you will be able to tell that the poison is out of your body!

Regular Member

Date Joined Feb 2008
Total Posts : 493
   Posted 5/1/2009 12:41 PM (GMT -7)   
I had the drains in my rectum and they were fine--a little uncomfortable. One fell out on its own at home and the other the surgeon pulled out on a follow up. I had to wear big old maxi pads for a while as the drains drained. cool Then, the visiting nurse and ultimately my husband packed the wound and now, 8 weeks later, it's almost closed.

I had liquids the first day after the surgery and then no restrictions (no roughage of course). YES the protein and food has helped and is helping my healing. Surgeon can't believe how fast my wounds healed. (I am dealing with lots of things from my malnourishment and issues prior to the surgery.) I did have lots of swelling--I looked like a circus member. Skinny on top and HUGE on the bottom from the swelling. Had one pair of shoes that would fit for weeks but it went down as my nutrition went up. Protein, as we all keep saying, is the key. My surgery was by 2 surgeons and assisted lap too.

Your fears about anesthesia and pain are totally normal. I had a list of questions for the surgical nurse, the anesthesiologist, the surgeon,the stoma nurse--everybody. That seemed to iron out my fears and my thoughts. Descriptions from this site (there was a big thread by Robinbyrd where we asked lots of preop questions and got good advice) and really helped me know what to expect for the sugery as did the book Living Well with an Ostomy.

We're with you!!
24+ years with Crohn's/colitis; fistulizing crohn's; ileostomy and proctocolectomy; propranolol and xanax; been on a ton of crohn's meds; praying to get through each day.

Regular Member

Date Joined Apr 2008
Total Posts : 163
   Posted 5/1/2009 3:30 PM (GMT -7)   
You are not going to believe how much better you are going to feel when this is over, so hang in there.

My surgery was laparoscopic, and the pain was much more manageable than I thought. You will likely have a pain pump full of morphine or dilaudid, and you can control your own meds. I think you may find that after all the pain you've been taking for granted and living with on a daily basis, the post-op pain will pale in comparison. I had the drain as well, which my surgeon warned me is often the worst part for people. I found it to be slightly uncomfortable, more of a nuisance than pain, until the final 12 hours of my hospital stay when I think it shifted or something, and then I had pretty intense pain until the surgeon removed it the morning of my discharge.

I had a liquid diet for the first 24 hours, then moved to low-residue solids, and my system adjusted pretty well -- don't worry too much in advance, you'll probably be just fine.

It is normal to be freaking out, but you can do this, and you will do great!!
Dx Mild Proctitis 7/06 at age 33, Dx Severe Pan Colitis 5/07, Dx Crohn's Colitis 10/07
Failed Asacol, Lialda, 6-MP, Canasa, Rowasa, Proctofoam, Entocort, Remicade, Humira
10/10/08 colon removed, temporary ileostomy
11/10/08 FINALLY off prednisone after 18 months
2nd of 3 surgeries planned for '09 to form j-pouch

Pin Cushion
Regular Member

Date Joined Feb 2003
Total Posts : 442
   Posted 5/1/2009 10:30 PM (GMT -7)   
Waving a watch back and forth saying calming things............
Ok if that didn't work, re read the posts above and remember you have already been through the worst of it. It will be so much better afterwards!
Moderator for the Diabetes forum
Sigmoid Colostomy / Crohns / Type 1 Diabetic / Ostioarthritus /RLS/ Fibromyalgia / Asthma / High Blood Pressure / High Colesterol / Migraines. Ain't life a joy?

* I think it may be time for a colorful metaphor*

Veteran Member

Date Joined Jun 2005
Total Posts : 981
   Posted 5/2/2009 3:34 AM (GMT -7)   
It is so true!! You wont believe how much better you will feel, I could feel it instantly. It was a great feeling immediately after my surgery, I was up and walking the very next day after 5 hours in the OR. I did have a couple of hiccups and had to have another surgery 4 days later due to infection collecting in my abdomen, but my surgery was only about 8 weeks ago and I feel like I could do anything. Good luck and keep us posted on your progress.

Regular Member

Date Joined Jan 2006
Total Posts : 449
   Posted 5/2/2009 5:17 AM (GMT -7)   
Thanks everyone. I was 100% FINE with this on Thursday, and then got up on Friday and realized.. "OH MY GOD! It's THIS thursday!!!" I've been a mess since. Trying to focus on my little girl and getting everything together for her, for me, getting bills set-up to pay automatically so I don't forget while on all the drugs...trying to wrap up what needs done in the household, etc. MUCH to do..and I think that's part of the panic!

I just wake up every morning hurting ALL over. I have arthritic pain from the Crohn's now. It is SO crippling. I'm worried that won't go away post-surgery, but I'm not sure. I'm hoping once surgery is over, I can get into a daily work-out routine and start eating healthier. HopefullY I can lose all this steroid weight then as well.

Thanks again for the REMINDERS on WHY I am doing this. It is just terrifying the closer you get to it.
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Remicade, Failed Clinical Trial ABT-874/Aisle 12, Failed Humira. Onto Tsyabri. If I fail that, total colectomy.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 20 months old

Equestrian Mom
Veteran Member

Date Joined Mar 2008
Total Posts : 3115
   Posted 5/3/2009 1:31 PM (GMT -7)   
you only have to look as far as your daughter...that was my motivation!!!

I think you've already rec'd some great comment/suggestions so I'll ditto those!! I'll just add that I just got home from my second weekend in a row that I spent completely involved with my daughter...doing things she loves...without a care for my situation...enjoying myself and the time with her!! It won't be long now:)

Veteran Member

Date Joined Dec 2008
Total Posts : 511
   Posted 5/3/2009 9:27 PM (GMT -7)   
Yea!!!  You are going to be better!!!  : )  The difference of our situations is that I had UC and was guaranteed the cure, but you're still kind of the danger zone in the sense that you may still have issues after the fact.  HOWEVER, there are many people with CD that have no other problems after the surgery.
My advice would be to make a pros and cons list about the surgery and your life.  My son and family were my main motivation to get better...that and the treatments worked and the constant pain thing just isn't my style.  : )  I opted for the proctocolectomy and permanent ileo, and have NEVER regretted it...except for maybe a few minutes during my blockage, that sucked.  Broccoli too early isn't a good idea...and make sure that when you do eat it, it's super mushy and just the flowery part.  : ) 
Also, when you go to the hospital go ahead and bring a little bottle of the Hollister M9 odor eliminator.  I was able to eat food almost immediately and it was AWESOME!!!  I also chowed down on hard candies and blow pops, which was what was suggested by some of the amazing people from here.  I asked tons of questions before my surgery and was given great advice.  This was all around the start of Feb., but they were bumped up about a month or so ago if you wanted to back track.  : )
Ooo...also bring your own pillow and blanket from home.  It helped ease my homesickness.  I am amazed with how many people are able to chit chat online during their stay b/c I was totally druggy and not able to focus on anything.  So, trashy tabloid mags were my time passer.  I was able reread them at least twice b/c I forgot what I read the first time.  : ) 
You really are going to have such an amazing life after the surgery.  The first month was emotional in a way b/c it was an adjustment, but now that it's been a few months I just cannot believe how great life is!  I am exhausted just b/c we are always on the go!  I told my husband that I am staying home and going no where this next Friday, as it is a state holiday and we are off work.  I am NOT leaving town, I am NOT putting on my face or doing my fact, I think I'm going to call that my Mother's Day and sleep in.  : )  My husband works Sundays so I'll be up early with our son and doing my daily I think Friday should be my 'Mother's Day'.  Yes...executive decision by me.  : )
Anyway, continue asking and expressing your thoughts and feelings b/c everyone here is AWESOME!!!  I could not have made it through my experience without this forum. 
: )  Robin
28 year old Mommy of an amazing 1 year old and Wife for 2 years!
Dx-May 2007 Moderate/Severe Pancolitis - failed all medications
Proctocolectomy w/ permanent ileostomy on 02/06/09!!!
"Your mind is like a parachute, it only works when it is open."  -Unknown

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