Next in line for surgery

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Blueheron
Veteran Member


Date Joined Feb 2010
Total Posts : 720
   Posted 11/1/2010 11:37 AM (GMT -6)   
I finally met with a CR surgeon a week and a half ago and will be getting a permanent ileostomy due to Ulcerative Colitis on November 8th. I was so worried he would not agree to do surgery or would try to persuade me to get one type of surgery over the other because I am only 38, but he was completely supportive of whatever I wanted. I was so relieved! I am so sick of the side effects from medications, especially the one dose of Remicade I did to end a severe flare and get out of a two-week stay in the hospital. It caused me the most excruciating joint pain that is still lingering in a milder form 4 weeks later. I am so glad I will never have to take it again.

I know this surgery will be the best option for my health and lifestyle, though I am still very nervous. I know I will be able to adjust to life with appliance after some trial and error and a big learning curve. However, the surgery itself scares me some. I have spent the last few weeks recovering from my hospitals stay, gaining strength, putting some weight back on and tapering down off a huge dose of Prednisone. I think I am in fairly decent shape for the surgery. Even though I am going to have one of the best surgeons in our area do the surgery, I still worry about complications, pain, and looking down at my news stoma thinking "what have I done!". The surgeon plans to close the anus and it sounds like some people have complications with this? The surgeon seemed to make it seem like this avoids problems with diseased tissue in the future. Also, how much weight have people lost during the surgery and recovery time?

Anyway, any advice on what to expect with pain, healing time, returning to work or anything else regarding the surgery would be much appreciated. I can't believe one week from now at this exact time I will be under the knife! Wish me luck.

mom_2 JnJ
Regular Member


Date Joined Nov 2009
Total Posts : 146
   Posted 11/1/2010 2:53 PM (GMT -6)   
 I had a colon resection done in 05 with a temp Ileo. The pain was really bad at first but I was dumb and asked to be taken off the morphene because I was scared I would become addicted.  Once I got out of the hopital I was much better. I got tired very easy for a week or so but otherwise I bounced right back. Once it was time for a reversal I was used to the ostomy. If only I knew that a few years down the road I would get UC I would have left the bag in place.

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 11/1/2010 5:41 PM (GMT -6)   
I had my surgery done when i was really really sick (92 pounds at 5'6), and didn't lose any weight in the hospital. I have been gaining since, and am now up to 122! I had my rectum removed and anus sewn shut and I haven't had problems. The pain was manageable in the hospital and I didn't take any of the pain pills that they prescribed once i was home. I just took like over the counter ibuprofen.

I am glad you have this attitude. You will be so thankful to stop feeling crappy and stop worrying about crazy drugs. Let us know if you have any other questions!
Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
Total Proctocolectomy and Permanent Ileostomy 3/18/10! :)
Blockage/Ileo revision 6/8/10 :/
 
Tried: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas, Psyllium Seed Powder... Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently taking: Prenatal Vitamin, Vitamin B 12 Complex, Biotin, Vitamin D, Calcium, Flomax (for urinary retention). 

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5968
   Posted 11/1/2010 7:14 PM (GMT -6)   
     My surgeon did not sew the anus closed and I am having problems in the anus.  Two months after surgery he had to drain a hematoma in the anus and I believe it has come back.  I still have mucus coming out too.  My surgeon said there are more complications when the anus is NOT sewn closed.  Perhaps he meant because of this drainage?  Where would it all go? 

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 11/1/2010 9:59 PM (GMT -6)   
first off YAY for being healthy soon!!! it will be so great!
And you might at some time look down and say, OMG what have i done??? In fact, when i woke up from surgery, my first thought was, i feel so much better, i could tell the disease was gone, my second thought was "this (alot of cuss words) hurts!' my third thought after seeing the clear bag, stuff in it and stoma was, "what have i done?" then i went right back to feeling better and then more drugs, lol.
But once i realized i wouldn't always have a clear bag and my output wouldn't always look like that, i was perfectly fine with it.
And anytime i start to think, ugh this sucks,i just remember how awful life was before, i look at the crayon my kid colored on the wall while he was stuck in the bathroom when he was stuck in there with me and i'm fine again, super happy and on with life!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 11/1/2010 10:01 PM (GMT -6)   
oh and i had my bottom sewed shut and that was so hard for me to wrap my head around, i just couldnt' figure out how you take a hole out! and it did hurt at first, but mostly it just itched for a while
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 11/3/2010 7:37 PM (GMT -6)   
Blueheron
Be brave and strong...you need your health back and if they dont take it all and give you appliance you have a chance of getting UC in other areas left...you don't want that.  Life never turns out exactly as we planned, but we are armed with knowledge from this forum to help you along the way.  Although I do not have a appliance I was reconnected as I did not have UC or cancer.
So research all you can so that your informed along the way.  It goes without saying that all of us here are praying for you and a great outcome, so you can live your life.
 
Prayers coming your way
 
Leslie

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 11/4/2010 3:10 AM (GMT -6)   
You are doing the right thing, and everything will be fine. Try to focus on the fact that you are going to be cured from UC in just a few days! smilewinkgrin Never again will you have to sprint to the bathroom or have pain after eating. The pain from the surgery is temporary and will be managed with pain medicine.

I recommend asking your CR surgeon for a pain pump, so you can press the button and get a dose of pain medicine as needed. If you didn't have one, you would have to call the nurse and wait for them to show up with medicine, which sometimes can take a half an hour, if they are helping another patient.

Bring a robe and slippers and WALK, WALK, WALK as much as you can after surgery. It will help wake up your small intestine, so you will start getting output. The sooner that happens, the better. Walking helps get trapped gas to move through, too. It can be so painful when it's trapped, so also bring some chewable Gas-X with you. I had to ask the nurse for some, and it took several hours for her to reach the doctor to get their approval and then get it from the pharmacy.

Please remember that the bag you will have on after surgery is NOTHING like the one you will be using on a regular basis. There is this huge wax ring that they use after surgery to attach it to you, and it hurts like crazy to get it off, because it pulls every hair out on your belly! I highly recommend shaving the side of your stomach where the stoma is going to go before surgery. If it's an ileostomy, then shave to the right of your belly button. Also, ask the nurse for adhesive remover wipes to use to remove that wafer. It will save you a lot of unnecessary pain.

They will hook you up with an ostomy nurse in the hospital, who will show you what you need to know and do and will give you free supplies, and we are here to help, as well. If you can bring your laptop to the hospital, that would be good, so we can keep in touch.

Those are the most important things I can think of right now. I'm praying that your surgery goes perfectly!

:-) Cecilia
Dx'd Crohn's in '99 at age 28. Proctocolectomy and permanent ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 11/4/2010 6:07 AM (GMT -6)   
You are going to be okay!! When ever a person has surgery there are bumps in the road...just take them in stride and one day you'll wake up and they're behind you:):):)

Each person has different experiences when they have surgery so don't worry too much about what complications could happen...just work through each day!

An IPod at night helped me get a good night's sleep. You may or may not want to read but magazines are easy to read. I like slippers without a back so you can just slip them on without help when going for your walks...which you need to do A LOT!

Keep us posted!
Crohn’s dx 1989
some terrible years before my
temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 11/4/2010 9:17 PM (GMT -6)   
a little more about the shaving, if you don't already have your area "down there" shave it before you go in! they will try to use a cheap razor, dry down there! that's what they came at me with,but i already had it shaved, thank goodnes! the last thing you need is razor burn too!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

Blueheron
Veteran Member


Date Joined Feb 2010
Total Posts : 720
   Posted 11/7/2010 5:38 PM (GMT -6)   
Thanks for the advice and encouragement everyone. Tomorrow is the big day. I am soooo nervous! Wonder if I will even be able to sleep tonight.

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5968
   Posted 11/7/2010 6:35 PM (GMT -6)   
     I slept the night before surgery...don't know how I did it ..lol.  You will be fine.  I'll be praying for ya!!! smilewinkgrin

honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 11/7/2010 7:12 PM (GMT -6)   
Blueheron
  Don't be nervous be at peace...they will give you meds that will make you ok..we are all pulling and praying for you and a speedy recovery.
 
Leslie
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