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Crohn's Disease Forum » Surgery » Surgery in 11 more days. In need of advise!


07-14-2012, 04:04 PM   #1
Mommy of 2
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Surgery in 11 more days. In need of advise!

First of all, I want to thank everyone for all your posts. This forum has been more then helpful to me

I'm going in for surgery on the 25th of this month. I still feel I don't know enough about what's going on inside my body, but apparently I now have fistulas and abscesses. (oh and I was diagnosed with crohns in spet 2011)
The only meds I've been on was prednasone and antibiotics for the abscesses. My GI recommends that after the surgey I start Imuran or humera. I'm incredible afraid of being on medication for the rest of my life, but then again I'd rather not have to deal with extreme flare ups anytime soon as well.
Is there anyone one here that had a resection surgery and DIDN'T take meds afterwards? And how long has it been since a flare? Any remission success stories you'd like to share? Actually any reception stories will be helpful.

Thanks!
07-14-2012, 04:38 PM   #2
kat-y
 
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Location: United Kingdom

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Hi, I had a resection a few weeks after diagnosis and had hoped to be drug free afterwards. I know it feels so disappointing to still have to go down the medication route even after the major surgery but I gather it's a strong case for preventing flare ups ( as much as you can with Crohn's so it has got to be worth a shot). I am now on Azathioprine and my symptoms are mostly in check although still some inflammation . Definite improvement from pre surgery !! Seems to be doing its job and I can work my life around it sometimes and need to work with it othertimes. I think it's a safety measure and I am all for caution. I hope it goes well for you too...just need to convince yourself you are being proactive which helps !
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Crohn's dx 2010
Resection 2010
Tried : Pentasa,Prednisolone,Cipro Flaxyl
Now on Azathioprine, VitD, B12
07-15-2012, 01:57 AM   #3
Mommy of 2
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Thank you so much for the advise!
Happy to hear you're feeling well
07-15-2012, 02:04 AM   #4
Snoflayk505
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Join Date: Apr 2011
Location: Albuquerque, New Mexico
Sorry you are having such a tough time I had resections and ostomy surgery and it still came back. Suffered for 11 years living in hospitals on meds and TPN. The only thing that makes my Crohn's stay away now is the SCD diet Started it 2 months ago and symptom and med free ever since. Have you tried any diet changes?
__________________
Diagnosed Crohn's/Colitis/RA/Hypothyroid in 2000
Endometriosis 05
Resection after resection, drug after drug
Ostomy placed, Rectum removed 2010 etc etc etc..

MED FREE! Working with GI on the SCD Diet to manage my Crohn's =D
I'm VERY new to the diet. Seems certain foods cause my symptoms. Testing that theory!

My recipe blog
www.foreverscd.blogspot.com

SCD site (food list, beginners guide)
http://www.breakingtheviciouscycle.i...llegal_a-c.htm
07-15-2012, 02:36 AM   #5
Jennifer
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Hi Mommy of 2!

I had my resection 13 years ago and am still in remission. I take 6MP to help keep me in remission. In my mind I'd like to avoid another flare and another surgery so I'm all for maintenance medication.

Trust me, I hate the idea of being on meds for the rest of my life but after 13 years and no side effects from the meds and being able to eat whatever I want, I think I'm doing pretty good. No matter how you obtain or stay in remission, I hope you and everyone else beats my record.
__________________
Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
07-16-2012, 02:53 PM   #6
Heather_D
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Hi Mommy of 2!

I was also put back on medication after surgery in March of this year. My GI currently has me on Apriso, but wants me to have a colonscopy in 6 months. If there are early signs of inflammation then the plan is to move me to a 6MP; which I'm not really thrilled with, but if it will keep me in remission longer than that's what I'll do.

Good luck!
__________________
-Heather

Diagnosed: Crohns Oct 2006
Prior Meds: Pentesa 4000 mg/daily; Cimzia 400 mg/monthly; Prednisone off and on from Aug 2011 - March 2012
Current Meds: Apriso started 4/14/2012
Surgery: Laparoscopic Ileocolic & Rectosigmoid Resection March 22, 2012
07-30-2012, 11:04 PM   #7
Mommy of 2
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So here I am recovering from surgery in the hospital. Post op day 5. On day 3 I was vomiting like crazy (which hurts a lot with 20 staples in your belly) and I have zero appitiet. When I do eat the odd piece of toast or pudding (something soft) I get incredibly nauseous! Also, very very very little energy. They incourage us to walk around the ward here and i get 4 rooms down and feel like im going to faint! Has anyone else experienced this? I guess I was just hoping to get cut open then sent home. Looks like this recovery stuff takes a while!
07-31-2012, 02:08 AM   #8
Jennifer
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Bleh. Your recovery sounds awful. I know how bad vomiting hurts (did it once and my God, the pain made me make sure I never did it again). Are you still vomiting? Just do as much as you can. Sounds like things are getting better just slowly unfortunately. Hope you'll get out of there soon and feeling better!
07-31-2012, 02:28 AM   #9
deb123
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Hi Mommy or two,

Glad to hear that you are on the road to recovery. Please remember you have had major surgery, so what you are managing is brilliant. I remember taking my first trips from bed after surgery and feeling faint and weak, but it will get better. I also had to take potassium drinks as i was very low from vomiting, so maybe get that checked out. It definitely helped with my recovery.
Good luck and best wishes.

07-31-2012, 06:14 AM   #10
CheerBear12
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Hi good luck and wishing a speedy recovery. Hope you get out there soon. Just take things easy baby steps. xx
07-31-2012, 06:29 AM   #11
Samboi
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Hi M2
Hope your recovery is progressing well.
Take your time and don't push things - you have had major surgery.
I was like you - thought I would have surgery and then sail home after a week and resume regular life - gee was I wrong!!
Relax and recover at a pace that feels right for you.
I used to see patients gliding down the hall with their IV poles - I was so jealous - didn't even have the energy to get out of bed.
But you will get there eventually.
Hope you're feeling better already!

xx
__________________
Dx - Crohns Disease - 1992
Ileostomy - Jan 2012, Reversed Aug 2013
Pred works, all else seems to fail
Trying Vedoluzimab - running out of options
Neupogen
07-31-2012, 10:59 AM   #12
Snoflayk505
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Location: Albuquerque, New Mexico
I used to get pain and nausea meds a little bit before I would attempt a walk in the beginning. Stay strong, you will get there. Keep us posted!
07-31-2012, 07:34 PM   #13
Peace_and_Charm
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I hope you feel better soon.

I have had two major bowel resections with abscesses and drainage.

What you are going through is unfortunately normal in my experience. My last surgery I was vomiting on the 5th or 6th day, and released after two weeks. It's a rough surgery - as you now know.

In my experience, it was 30 days before I could go back to work - and it was a struggle. I would say I was 80% by then.

Do yourself a favor - leave the hospital with a prescription of Percocet. You will be sore for a while, and you shouldn't suffer more than you already have.

Good luck, you will be swell in a while.
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