Surgery-The day has finally been set!

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spiceman
Regular Member


Date Joined Aug 2008
Total Posts : 51
   Posted 12/14/2008 9:33 AM (GMT -7)   
Hi Everybody.
 
After 17 years with Crohns, surgery will soon be upon me. To be honest I never thought this day would happen to me, up until the beginning of the year I really thought I would be one of the few that didn't need surgery...  How wrong I was.
 
The day has been set for the 28th Jan 2009. After suffering with terrible bloating/distended feeling the small bowel follow through I had finally showed my stricture up at the terminal ileum. The test was done via nasogastric tube. Deep down I new something was wrong this time because I've never suffered with this horrible feeling before.
 
I had my follow up consultation with my GI and colorectal surgeon yesterday which he explained to me that he thought the time had arrived for surgery. He hopes to do stricturplasty but if not it will be a resection. It will be done open surgery and not laporoscopic which I don't know the reasons why.
 
I have always been worried about needing a stoma bag if under going surgery but he explained that this will not be the case so that really pleased me.
 
He said there is a 50% chance that I may require a second operation within 10 years. Fingers crossed this will be my one and only.
 
I must say I will be pleased that I dont have to suffer with the worry of getting a blockage in the near future, that pain is unreal.... After surgery can we go eating what we like instead of sticking to low fiber/low residue food???
 
Im 36 years old at the moment and since I was diagnosed with Crohns I really did live life to the max - Drinking/smoking/eating rich foods etc. Now I've cut out everything and hopefully I will enjoy a long remission after surgery. I will be a good boy from now...
 
Just would like to say thanks for your advice in the past. You all were right that it looked liked stricture problems.
 
I now would be greatful from hearing from anyone who have had similar operations... Thanks all.

Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 12/14/2008 10:12 AM (GMT -7)   
I'm in the same boat as you. I thought that I would never require surgery.
Well, here I am awaiting a date for surgery..
My surgeon said that I would be done Lapro unless there was some unusual complications. She stated that 90 percent of her operations are done Lapro.
I would ask your surgeon why he is doing open.
Any how, I wish you the best of luck and wish you a speedy recovery.
Keep us posted afterwards, so that I know what to expect. ( In case I want to chicken out)

Wishing you well!

Wolfie

spiceman
Regular Member


Date Joined Aug 2008
Total Posts : 51
   Posted 12/14/2008 10:36 AM (GMT -7)   
Hi Wolfie.
 
Are you having surgery because of a stricture?

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 12/14/2008 5:41 PM (GMT -7)   
Hi Thanks for the update. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 12/14/2008 5:52 PM (GMT -7)   

Here's hoping this surgery leads you to a long long remission.  My first resection was a emergency, so you are lucky that yours is planned.  Really makes it a little easier.  Yes, my diet did change afterwards.  I could anything I wanted before, but now I stick with a low res all the time.  But some folks can eat alot more things.  Its kinda a individual thing. Wishing you all the best.

God Bless,

Gail *Nanners*


Been living with Crohn's Disease for 33 years.  Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium.  Resections in 2002 and 2005.  Also diagnosed with Fibromyalgia and Osteoarthritis. Currently my Crohns is in remission.


Joie1
Regular Member


Date Joined Oct 2008
Total Posts : 376
   Posted 12/14/2008 6:15 PM (GMT -7)   
After the first surgery...I could eat foods like always after a couple of months of taking it easy on food ('cause hey...you did just cut into the bowel). Then I could eat whatever I wanted. After #2, so many many restrictions on diet but could also tie into the removal of gallbladder. Make sure to have Ensure in the fridge. My golly if I'd known after my first resection, I'd totally have had some. I gained a disgusting amount of weight after resection #1...almost all the weight I'd lost. After #2, not so much weight gain. Just slowly try to incorporate spicy, seedy, fatty, etc. in at a super slow rate so you'll know if its a bad thing or a good thing.
27/f/CD. 4 CD related surgeries: 2 resections, 2 JP drains, 3 NG tubes, many absesses (including the one my most recent surgery scraped off my ovary) and fistulas.
Currently trying to figure out hip and knee joint pain.
Have lost in these surgeries: appendix, 8 in. intestine, R fallopian tube, gallbladder, 10 in. intestine
Crohns Dx'd: February 2008.
Pentasa (and much mental screaming)

Trying to hang in there until January so I'll have some insurance and can visit a rheumy, neuro, GI, primary, pain control, and possibly a shrink so I could stop crying and living in my own lil pity party. :-P


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 12/14/2008 6:19 PM (GMT -7)   
I'm glad to hear you were able to go so long without surgery, and I'm glad to hear that you're approaching your upcoming surgery with a positive attitude! I hope for the very best :) Keep us updated on all of this...
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone(down to 10 mg), pentasa, bentyl as needed, prilosec, tandem plus, humira, and good probiotics
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.

"He who has a why to live for can bear with almost any how."


hspenser
Veteran Member


Date Joined Dec 2005
Total Posts : 544
   Posted 12/16/2008 6:34 AM (GMT -7)   

sounds like you are going into this with a great attitude.

using this board for some insight is a good thing.  i just had my surgery last month (resection of the small intestine...about 30 inches removed) and the people on here were very helpful.  the greatest thing I learned on here was how different everyone reacted or recovered from the surgery....just like with the disease we are all affected differently.

For me there were a few key things that helped and one or two do's and don'ts....Do not take your Blackberry or cell phone to the hospital with you...let someone bring it to you when you are in day three or four of recovery.  I saw some of the e-mails and IM's I sent...they made no sense.    Be sure to tell your surgeon to load you up on the pain killers on the front end and use all you can get for the first two days....no reason to tough it out.  I was out of it the first 2 or 3 days, but then I also was able to stop all pain meds by day 4.

Make sure that you are pre-loaded with anti-b's and Flagyl.  the flagyl will help keep down the chances of C-dif which can run rampant in a hospital.

Ask for the incision to be vertical.  this way if you ever do need a bag or pouch you have left the field clear for that type of incision and avoid scar tissue in that area.   Be sure to ask to have all prep including the NG tube and the cathetor done once you are knocked out.

get up and get walking as soon as possible after the surgery.  walk and just keep walking.  Drink plenty of fluids after the surgery.

stick with the softer bland foods for the first week or so...small meals several times a day.  If you are lucky like me....you will discover a hunger for food you may have forgotten ever exisited.  I now have to be careful to not eat too much.

be sure to have some soft, loose waist banded clothes to wear until the staples come out...and then a few days after that as well.

You may want a small soft pillow to hold against your stomach (the incision site) when you are in the car riding home...and then keep it handy for sneezes and coughs.  It is best to hold your stomach if you cough, sneeze or belly laugh.

Good luck...I know that for me...while surgery is a last resort and should be...I have not felt this good in years.


dx IBS 1999   UC 2000   CD 2001
Tested BIOGEN TYSABRI (gave me 2 years of remission)
tried Naltrexone Jan. 19, 2007 Stopped the Naltrexone July 28th...started Humira Aug 31st, 2007...current dose one shot every week. Also nightly dose of mesalamine.
Surgery Nov 4th, 2008 removed 30 inches of small bowel.
 Crohns is currently active and has been since April of 2005
52 yrs old


mg384
New Member


Date Joined Dec 2008
Total Posts : 5
   Posted 12/16/2008 7:07 AM (GMT -7)   
My 1st resection was such a Godsend. I was so sick and in the hospital more than home for the 4 months prior to the surgery. It also happened that the surgery was done on my 22nd birthday.

It was the BEST present ever!!

I agree with the pillow and walking thing. I had a stomach tube for roughly 3-4 days until they started hearing bowel sounds, so I was fed through my IV, although I did have the occasional popsicle and hard candy. I had horrible dry mouth.

My only advice would be to SLOWLY introduce food when you are allowed to eat.
I started having normal food again by the time I went home 12 days after surgery and ended up back in the hospital 4 weeks after surgery cause I had an infection in my intestine.
I was told it was a freak thing but can happen.

Good luck with surgery and you'll be amazed at how better you feel once you are healed.
Living with CD since 1994
Resections in 1998 & 2002
Too many colonoscopies, SBF's and flair-ups to count.
Allergic to most CD meds so only steriods and resections are options.
Take K-Lor 3x's, nexium 2x's, vicodine daily and B-12 per month.
Have acute myopic macular degeneration, retinal pigmentosia, RA, joint fusion and chronic low energy.
Also a 3rd generation DES daughter.


spiceman
Regular Member


Date Joined Aug 2008
Total Posts : 51
   Posted 12/16/2008 3:13 PM (GMT -7)   

Hi Thanks for your replies.

Just a few question regarding the people who's had resections done.

Did you have it done Laporo?

What was the main reason for you needing the operation in the first place?

Did you ever need a stoma bag fitted? Plus what makes some people need them and not others?

Do you feel the benefits now its all done? Like could you do excercise now which you couldn't before?

I must admit now im having my first operation done I hope its not the start of more, like now ive got the ball rolling........more will come.

Sorry for asking these questions, I just know asking and chatting about it from likewise people is the best knowledge I can gain

Thanks Spiceman

 

 

 


hspenser
Veteran Member


Date Joined Dec 2005
Total Posts : 544
   Posted 12/16/2008 3:38 PM (GMT -7)   

Did you have it done Laporo? 

NO, I had a full vertical 8 to 9 inch incision.

What was the main reason for you needing the operation in the first place?

I was getting blocked several times a week and some of the episodes required a visit to the ER...so they felt the best thing was to do the surgery and give me the relief I needed.

Did you ever need a stoma bag fitted? Plus what makes some people need them and not others?

No bag....don't know what the deciding factors are.

Do you feel the benefits now its all done? Like could you do excercise now which you couldn't before?

Without a doubt.  I feel better than I can ever remember feeling in the past 8 to 10 years....I have my appitite back and lots of energy.  People have commented that they think I have my color back.

I must admit now im having my first operation done I hope its not the start of more, like now ive got the ball rolling........more will come.

That is the chance we all take....but what other choice do you have...for me the only choice was to wait until it got so bad that it burst....cross the bridge of more surgery when you get there, what does worry about it now do ?

Sorry for asking these questions, I just know asking and chatting about it from likewise people is the best knowledge I can gain

I think talking about it here with veterans of this disease is one of the best things you can do....I did it...and I was very prepared when I went in.  I asked the right questions, I knew what to expect and I didn't let anyone make my decisions for me because I was fully informed going in.

Good luck

 

 

 



dx IBS 1999   UC 2000   CD 2001
Tested BIOGEN TYSABRI (gave me 2 years of remission)
tried Naltrexone Jan. 19, 2007 Stopped the Naltrexone July 28th...started Humira Aug 31st, 2007...current dose one shot every week. Also nightly dose of mesalamine.
Surgery Nov 4th, 2008 removed 30 inches of small bowel.
 Crohns is currently active and has been since April of 2005
52 yrs old


spiceman
Regular Member


Date Joined Aug 2008
Total Posts : 51
   Posted 12/16/2008 3:52 PM (GMT -7)   

Cheers Hspencer

You answered that perfectly, Thanks so much...


mg384
New Member


Date Joined Dec 2008
Total Posts : 5
   Posted 12/16/2008 7:36 PM (GMT -7)   
Did you have it done Laporo? Nope, not an option for me. SCar/s run from pelvis to 3 inches past the bellybutton.

What was the main reason for you needing the operation in the first place? I was so inflammed that even the steriods in the hospital weren't working and the second they lowered my dose from 100mg I'd turn really sick.

Did you ever need a stoma bag fitted? Plus what makes some people need them and not others? No. All my surgeon told me about that was that my intestines weren't THAT bad and could be saved, so no bag.

Do you feel the benefits now its all done? Like could you do excercise now which you couldn't before? I have never felt better than after my surgeries, both of them. It was like someone turned on a switch-1 was pain 24/7, lots of hospital stays and the other was living pain free.
Living with CD since 1994
Resections in 1998 & 2002
Too many colonoscopies, SBF's and flair-ups to count.
Allergic to most CD meds so only steriods and resections are options.
Take K-Lor 3x's, nexium 2x's, vicodine daily and B-12 per month.
Have acute myopic macular degeneration, retinal pigmentosia, RA, joint fusion and chronic low energy.
Also a 3rd generation DES daughter.


Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 12/17/2008 4:53 AM (GMT -7)   
spiceman said...
Hi Wolfie.


Are you having surgery because of a stricture?


Spiceman,Yes I have a 5" stricture in the TI that needs to be removed.
I wish you the best!!

Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 12/17/2008 4:57 AM (GMT -7)   
How long does the surgery typically last?

hspenser
Veteran Member


Date Joined Dec 2005
Total Posts : 544
   Posted 12/17/2008 3:34 PM (GMT -7)   
Wolfie40 said...
How long does the surgery typically last?
my resection included the removal of two bad sections (and some good tissue that was in between the bad)...a full visual and hands on inspection of the rest of the large and small colon.   The actual surgery required about two hours...I was wheeled into the OR prep about 12:15 PM....they knocked me out with in about 10 or 15 minutes....inserted all the tubes they needed and shaved my stomach from the nipples to the top of the pelvic bone (that must have taken about 6 blades and 20 minutes)  I am told that took about 1 hour total......then I was in ICU recovery for about an hour before being taken to ICU (for two days)  My wife said from the time I was wheeled into the OR area until she was allowed to see me was just over 3 hours.
 
BTW....honestly speaking...and this will sound silly....but one of the worst things about the surgery has been the itching from the shave site...I am a bit of a hairy beast and it has been pure heck for the last three or four weeks.  LOL
dx IBS 1999   UC 2000   CD 2001
Tested BIOGEN TYSABRI (gave me 2 years of remission)
tried Naltrexone Jan. 19, 2007 Stopped the Naltrexone July 28th...started Humira Aug 31st, 2007...current dose one shot every week. Also nightly dose of mesalamine.
Surgery Nov 4th, 2008 removed 30 inches of small bowel.
 Crohns is currently active and has been since April of 2005
52 yrs old


Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 12/17/2008 4:47 PM (GMT -7)   
Icu?? They had you go there for 2 days? Is that normal?
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