Crying over fears of my first Bowel Resection surgery...what should I expect?

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bachi
Regular Member


Date Joined Jan 2009
Total Posts : 20
   Posted 8/20/2009 9:14 AM (GMT -7)   
Meeting with the surgeon on Sept. 3rd. I've been crying in fear over this surgery. Can anyone who has had the surgery give me an idea of what to expect?
 
 
I'm a teacher and a mother of a two year old little girl. Will I ever get my life back?

Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 8/20/2009 11:48 AM (GMT -7)   
I had a 6 year old and a 3 year old when I had my first resection. And I was miserable before it. I really was pushing to be the mother my daughters needed me to be. As soon as they would nap, so would I. Some days we would have 'quiet' days where I was on the couch and they would just play on the floor. I don't know what your life is like now, but my guess is that if you are heading to surgery, it can't be much better.

For the first little bit, you will need help. You won't be able to lift your daughter to change her or put her in her crib for a few weeks. The standard is nothing over 5lbs. And you will need to eat very soft food for a while and expect to have loose bowels until your body heals. But in the long run, you will get your energy back and you will be able to do all the things you want to do. Just give yourself time to heal first. If you have family around that can come to help, let them. Don't try to be a hero. If you don't have anyone to help, then do as much prep work as you can. Freeze meals so that you can have easy dinners ready, especially on nights when you aren't feeling your best, because you will have good days, and bad days in the healing process. Try to set things up so that for the first little bit you don't have to go up and down stairs too much. Have all your daughters favorites things and maybe even some easy snacks on the main living area/den, plus a diapering station. These are just a few tips.

My girls are in college now, but I was able to chaperone field trips, be room mother, run the book fair, be PTO president, basically be the typical koolaid Mom from the TV commercials. My resections gave me my life back and allowed me to be a real Mom to my daughters.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


aim928
Regular Member


Date Joined May 2007
Total Posts : 38
   Posted 8/20/2009 12:00 PM (GMT -7)   
Hello! I had the same kind of anxiety prior to surgery. I was crying all the time. I too have 2 little kids the same age as you and I was worried sick. However, this was my first resection and had I known how much better I would feel I wouldn't have been such a mess! I had surgery on July 27th and I within 2 weeks I felt WAY better than I had in years! I feel completly normal now. Prior to this I would rest all evening long and could not go play with my kids. I honestly never thought I would feel this good. Not sure how long it's going to last but I am sure going to make it worth it! I have also been able to eat things that I could not prior to the surgery.
 
Good luck!
Amy
DX in 2007. Was on Asacol for almost 2 years and the Entocort for 6 months. That has now stopped working so currently on Prednisone while trying to get up the courage to take Remicade.


crohnielass
Veteran Member


Date Joined Mar 2009
Total Posts : 1118
   Posted 8/20/2009 1:11 PM (GMT -7)   
Hi Amy,I had a resection done over 15 years ago  my children were 3&4 at the time and i can honestly say it was the best thing i had done and never regreted that decision i made,  i also got a long remmision out of it!!!i was really ill and unable physically to look after my kids the way i wanted to because of the pain,fatigue, and the dreaded D i couldn't carry on like that. So i had the op it wasn't to bad ,but the recent op i had in Jan was far better. I was given an epidural to knock me out and it is also used after the op for pain relief  as well as a morphine pump i had no pain whatsoever i just suffered with being sick and gas around my back at day 3 but that was it if you read my sig below don't be alarmed about the temp stoma situation you probably won't need that but i had a fistula that needed seeing to at the same time. Everybody gets anxious when your going into the unknown its only natural, but try and  think of the outcome, You will have your life back! eating what you want, not tired all the time and the best thing being able to enjoy your little girl pain free!!!! good luck sweetie
Let us know how you get on Bev x
Diagnosed with crohn's at 13 now 42
resection, right hemi 1993 In remmision from 93 till last sept with no meds or docs
2 resections small bowel  and fistula jan 09 and given temp stoma.  reversal sheduled for Nov09 Meds:Pentasa 500mg 3x day,  B12 shots, every 3 months, iron syrup,loperimide,folic acid, Back on citalopram 40mg (for Anxiety.)


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/20/2009 1:18 PM (GMT -7)   
I can't add anything to the above, but to agree, after the recovery I am sure you will be wondering why you waited so long. Do you know if they will be doing it via laprascopy or the open surgery? It seems as if at all possible they are doing them via lap now instead of the open surgery. But sometimes when they get in there they find things are worse than they thought and they will convert to open, but I am sure your surgeon will explain. Most feel so much better afterwards. Hoping your surgery leads you to a long long remission.

Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

bachi
Regular Member


Date Joined Jan 2009
Total Posts : 20
   Posted 8/20/2009 3:17 PM (GMT -7)   
Thank you all soooo much for your replies. They are all so comforting! I already feel worlds better. Thank you. Thank you. Thank you!!!
Diagnosed with Crohn's disease 11 years ago.
 
Been on Prednisone, Asocol, 6MP, Entocort, Cipro, Lialda, Remicade, Cimzia.
 
Most success on Remicade.
 
Heading for first surgery, bowel resection sometime soon.
 
 


chron's71
New Member


Date Joined Aug 2009
Total Posts : 4
   Posted 8/20/2009 3:21 PM (GMT -7)   
Wishing you the very best in your up coming surgery, I waited for years until I was really, really sick before my 1st bowel resection -'89- then the 2nd in '93, should never have waited so long, the 2nd surgery was far better than the 1st, it has been 16 years and I haven't been in the hospital until Dec 08.  Still waiting, no surgery as of yet.  Take your time and good care of yourself after the surgery, you will not regret it.  Again the very best to you------------
 
PS - My grandson told me about this site, I know of knowone in this town who has Crohn's - was so nervous, I mispelled crohn's after 40 years - oh well that's old age for you.  You will have a much better life and future ahead of you!!! Chron's71 (the year crohn's was finally diagnosised after 4 years and many, many hospital trips.  Diagnostic test are better today, thank goodness.

SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 8/20/2009 4:17 PM (GMT -7)   
You've already gotten great advice.
Just wanted to add that while you are recovering after the surgery in the hospital to get up and about asap. Try using a pillow on your tummy when getting out of bed and use the pain pump just before you are about to get up. Dont be afraid of using the pain meds - they are there to aid your recovery. I walked all around the hospital ward each day and found that helped.
Good luck and let us know how you are.
Jo

Dagger
Veteran Member


Date Joined Apr 2008
Total Posts : 1522
   Posted 8/20/2009 6:07 PM (GMT -7)   
I've had 4 abdominal surgeries and the resection was the easiest to recover from. Mine was done laproscopically, with a 3 inch incision under my belly button. I had to stay in the hospital 5 days until my intestines started working again. I felt fine when I left the hospital and actually went shopping for a few hours.

I've found that the pain was the greatest for the first two days after the surgeries and then improved very, very quickly. It felt like I had done about 3 million situps. It was never really bad and the meds easily took care of the worst of it. Walk around every chance you get, even if it hurts.

I was very tired for about 6 weeks and needed naps to make it though the day even though I didn't do anything all day.

kandc88
Regular Member


Date Joined Sep 2008
Total Posts : 65
   Posted 8/21/2009 12:31 PM (GMT -7)   
I am currently 9 days post resection #3.  I waited a long time for this operation because the prior two were certainly not remembered as a good time.  This third time was by far my best experience.  I had an epidural placed prior to surgery which stayed in place to provide pain relief for 3-4 days.  I had a pain pump in addition which helped with the remaining pain.  I was managed by an acute pain managment team and transitioned to oral meds before being released from the hospital on day #7.  I'm still on large doses of pain killers, but am tapering and definitely every day am getting better.  I am able to eat foods I have not eaten since 2004 and the surgeon says that 6 weeks post op I should be able to add in more fibrous foods like raw fruite and veggies and salad, all in small quantities, but all things I haven't been able to eat in 10 years.  My resections were all fairly complicated, fistulas and adhesions, this current one found my small bowel adhered to the wall of my abdominal muscle.  They were all open surgeries, one scheduled as such and two conversions from laproscopic due to the messed up state they always seem to find my intestines in...
 
If your quality of life is sucky as was mine, you will find the surgery to be a great relief, definitely it's what you should do if you're suffering and no longer able to kill the beast with the current meds etc.  After surgery you need to stay on the meds that do work for you, not wait till symptoms reappear.  I'm going to use Humira as a maintenance med, since Remicade has worked in the past for me, and 6-mp did not keep me in remission after my last surgery.  I suspect in one more week I will be so much happier and able to cope with my life again.
 
There are after surgery side effects, like increased potty trips, I know where all bathrooms are when out in public.  At friends houses I sometimes request the use of an out of the way bathroom if needed.  There are drugs available to help with urgency problems and they can also be quality of life savers after surgery so make sure you also discuss this with your doctor if the need arises.
 
I have three kids, 8, 5 and 2 and need help with the 2 year old to keep him from hitting or jumping on me.  It's hard enough to manage right now to walk around, get myself food and drinks, etc.  My mom was able to help for the first 1.5 weeks, I have another family member helping for another week and then will use my friends to help with dinner, laundry and my little one until I am able to lift him again.  You will need a lot of help so make sure to ask for it!
 
Amy...I just wanted to say, get on the Remicade!  You don't want to undo what the surgery has accomplished.  I was on it with no problems and all good results 6 years ago before my last surgery...I should have gotten right back onto the same type of med after my last resection.  The "big gun" drugs can seem scary, but the alternate is also not good, multiple surgeries have left me with borderline short bowel and only time will tell if I will require TPN, I currently have 120cm left...
 
Kim

tiaeight
Regular Member


Date Joined Sep 2006
Total Posts : 237
   Posted 8/23/2009 9:19 PM (GMT -7)   
My surgery, 4 weeks ago went fine. My scars are almost gone. I am using Bio Oil and it seems to help. I did not have a pain pump. I went into surgery at 10 and was out at 1. I did get a pain shot every so many hours. However, they did make me get up and walk the next morning. As hard as it was, it helped alot. After 5 days, I was released. Good luck to you!

P.S. Humira seems to be my drug of choice. Remicaide did not work for me.

spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 8/23/2009 10:29 PM (GMT -7)   
I will probably have my first bowel surgery this fall too. Thanks to all of you who have posted, because it really helps to know what to expect :-).
34 years old, Crohn's disease for 15 of them
Current Meds: Humira since 7/08, Pentasa, Effexor XR
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, B-Complex, Vitamins D, E, & K, Calcium, Magnesium, Enzymes
SCD since 12/01/08 - eating Stage 3 foods


bachi
Regular Member


Date Joined Jan 2009
Total Posts : 20
   Posted 8/26/2009 6:52 AM (GMT -7)   
Well I'm going in for my emergency surgery tomorrow. They are taking out the right side of my colon. The doctor seems to think he'll have to open me up completely. I'm a little nervous, and overwhelmed.
 
Thanks to all who replied.
 
I'll post an update as soon as I'm out of the hospital.
 
Wish me luck!
 
Diagnosed with Crohn's disease 11 years ago.
 
Been on Prednisone, Asocol, 6MP, Entocort, Cipro, Lialda, Remicade, Cimzia.
 
Most success on Remicade.
 
Heading for first surgery, bowel resection sometime soon.
 
 


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 8/26/2009 9:06 AM (GMT -7)   
Good luck Bachi. Will be thinking of you and looking forward to an update.
Mike
33 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. Proferrin iron pills.

Tried SCD, didn't work, now avoiding gluten and dairy.


Go Saskatchewan Roughriders!


Curly9878
Regular Member


Date Joined Apr 2007
Total Posts : 165
   Posted 8/28/2009 8:01 PM (GMT -7)   
HAve no fear!
 
It is a pc of cake!
Easy stuff, great results...
 
Best decision I have ever made!
 
no worries...  nothing to it!
30 years old.
Single, probably always will be...  In fact, I bet I become "the cat lady" of the neighborhood...  Only thing is, I am not a fan of cats.    
Oh and as an added bonus, I am a FAT girl with Crohns...  
I am getting ready for my first resection....   My mom always said my beauty was on the inside...   sooo what does it mean when my insides are a mess???   Thanks mom!  I bet I inhereted Crohns from your side of the family.  
NO GUTS-NO GLORY!!!    So, once I get my guts removed...   My "Glory" days are over....
 
That about sums me up!
 


bachi
Regular Member


Date Joined Jan 2009
Total Posts : 20
   Posted 9/3/2009 5:52 PM (GMT -7)   
Well,
 
I came home from hospital today. Turns out the doctors did not have to 0pen me up completely, but recovery was a little longer than expected.
 
They took out 12 inches of my right colon. I'm still in a lot of pain, but am glad that the drainage tube is out of my side, which is what annoyed me most of all. I'm feeling better every day. I'm going through shock right now because it feels weird being home from the hospital. Hoping to see good results soon.
 
I'll keep everyone posted.
 
Thanks for keeping me in your thoughts everyone!
Diagnosed with Crohn's disease 11 years ago.
 
Been on Prednisone, Asocol, 6MP, Entocort, Cipro, Lialda, Remicade, Cimzia.
 
Most success on Remicade.
 
Heading for first surgery, bowel resection sometime soon.
 
 


pimfram
Veteran Member


Date Joined May 2009
Total Posts : 506
   Posted 9/3/2009 7:23 PM (GMT -7)   
Glad to hear you're doing well.
Diagnosed with CD July 2007
Currently on Remicade, Imuran, probiotics, folic acid, multivitamin.


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 9/4/2009 6:31 AM (GMT -7)   
glad to hear things are getting better.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/4/2009 6:38 AM (GMT -7)   
Bachi,

Glad to hear you are home and recovering from your surgery. Some people have minimal pain, and others like you and I suffer greatly afterwards. Take your pain meds as needed, and don't feel bad for needing them. All of us are different in how we deal with pain. Try to rest, but also try to walk around some too. Basically what I am trying to say, is be kind to yourself. And the one thing I always recommend because of lessons learned the hard way, be sure to get back on some type of maintainence meds so you can avoid a repeat.

Good luck
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*
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