when is it time for surgery?

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MissCris
Regular Member


Date Joined Jun 2006
Total Posts : 321
   Posted 1/18/2010 8:20 PM (GMT -7)   
To me, the thought of surgery was just out of the question unless I had an obstruction or was unable to get a flare under control for an extended period of time. However, I've been thinking about it a lot lately especially since the GI who did my last scope said that surgery looks pretty inevitable. I don't even want them to cut out all of the CD affected area, I just want to get rid of my stricture. It is never going to get better on it's own and it is super noisy and painful at times. I fantasize about cutting out my own guts which is twisted and probably really unhealthy. Is it crazy that I want to volunteer for surgery? I don't even know if my GI would let me, I haven't met with him about the scope results yet.

Would you get surgery to remove a stricture if you were "mostly ok" or would you only do it for something like an obstruction?
"Be ashamed to die until you have won some victory for humanity" ~ Horace Mann


Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 1/18/2010 8:28 PM (GMT -7)   
I had surgery when I was obstructed. After that, I developed a bit of a stricture which causes obstructions sometimes. I am doing everything I can to avoid surgery unless I becomes so obstructed that I can't take it. Eat healthy and stay on your treatment.
A stricture and a lot of inflammation can lead to frequent obstructions.

spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 1/18/2010 9:15 PM (GMT -7)   
I had elective surgery. I was feeling fine, but my stricture was 7mm, a disaster waiting to happen. I'd had obstructions once or twice a year for some time, and was tired of fearing the next one. I'm glad I had the surgery when I was relatively healthy rather then waiting for an emergency. I think it helped me heal better.
34 years old, Crohn's disease for 15 of them
Resection of ileocecal valve on 09/22/09
Current Meds: LDN, Pentasa, Effexor XR, Zyrtec
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, Vitamin D, Calcium, Magnesium, Coconut Oil, Garlic Oil, CoQ10, Enzymes
SCD since 12/01/08 - eating Stage 3 foods


MissCris
Regular Member


Date Joined Jun 2006
Total Posts : 321
   Posted 1/18/2010 9:27 PM (GMT -7)   
Thanks :) It's nice to see both sides of it
"Be ashamed to die until you have won some victory for humanity" ~ Horace Mann


Bammer
Regular Member


Date Joined Mar 2008
Total Posts : 381
   Posted 1/18/2010 11:33 PM (GMT -7)   

When they found a stricture in my colon and recommended surgery I did not even know I had Crohn's. I was feeling fine, only narrowed stool. I was referred to many GI's and two surgeons and had many tests over the next two years. It was determined that it was scar tissue, no medication was going to take it away and there was a risk of leaving it so I had surgery while all the time feeling fine. That baffled every medical professional that I saw(the fact that I was feeling as good as I was when they saw the stricture; it was referred to it as a real mess). I am  glad that I went through with it but only after more knowledge.  I would want to know where and what we are dealing with before surgery.

Good luck.

 
57 yr. old F dx. CD 07/07
Was on prednisone for three months but no medication for next 11 months.
Started weekly methotrexate injections 09/22/08.
Lap assisted sigmoidoscopy done May 11/2009


Irishmom4
Regular Member


Date Joined Sep 2008
Total Posts : 457
   Posted 1/19/2010 4:43 AM (GMT -7)   
After my first total obstruction I battled the disease for 5 years and then finally gave up. Three years after my surgery and it is creeping back up on me . No obstructions yet, but I have been flaring off and on for the last year and a half so I know I am buildiing scar tissue and the obstructions will follow.

Elizabeth
Dx'd with Crohns 1984
Polycystic kidney disease in 1996
Bowel Resection surgery 2006, Now on Asacol, Endocort, Prednisone, Imuran, Folic acid, and Enalapril.
 


Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 1/19/2010 4:58 AM (GMT -7)   
I had 2 obstructions before having surgery. The funny thing is that my GI said that I would never need surgery. Anyhow I was told that is was scar tissue and that no meds would fix that.
I never really had any pain or problems , then that last obstruction and a colonoscopy told me it was time.
The surgery and recovery all went well they removed 18" of some nasty looking intestine. As luck wpuld have it my Crohns has come back 10 months after surgery :-(
I will fight this to the end!!!!
I will say this, I would rather have surgery when I want to rather then when it is an emergency.
Good luck with your decision.
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications:Humira,  Asacol, FolicAcid,  Multivitamin, 1000mg Calcium, Vitamin D, Probiotics, Pepcid Complete, Questran,  Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.


MissCris
Regular Member


Date Joined Jun 2006
Total Posts : 321
   Posted 1/19/2010 10:39 AM (GMT -7)   
Thank you. It makes sense to have surgery when you are feeling better than when it's an emergency...I'm sure the healing process would be easier. My stricture is so tight that they couldn't get a pediatric scope through it. They've never been able to get into my ilium since I was diagnosed because of the narrowing and scarring which means dialation isn't an option unfortunately. I really appreciate all of the responses. I feel better about discussing my options with my GI now :P
"Be ashamed to die until you have won some victory for humanity" ~ Horace Mann


crohnielass
Veteran Member


Date Joined Mar 2009
Total Posts : 1118
   Posted 1/19/2010 11:06 AM (GMT -7)   
Hi misscris, I recently found out that i had 4 small stictures removed from the small bowel i got to the stage where i wouldn't eat because i knew i would get pain, ended up malnourished surgery was really the only option as it had gone past meds sorting it out. Crohn's wise doing great now.
As wolfie40 said maybe better to have surgery than to wait for it to become an emergency.Wishing you all the best in whatever you decide to do Bev x
Diagnosed with crohns at 13 now 43
Reversal of temp stoma scheduled 27th Jan 10 :-)
Meds: Iron syrup,Loperimide,Folic acid & Citalopram 60mg (for Anxiety.)

Never be afraid to try something new;
remember amateurs built the ark, professionals built the Titanic.


MissCris
Regular Member


Date Joined Jun 2006
Total Posts : 321
   Posted 1/19/2010 11:07 PM (GMT -7)   
How long was it before you guys were 100% after surgery? I mean as far as being able to be up and about. I'm trying to decide if I could do it over a spring/summer break or if I should hold off until I finish grad school
"Be ashamed to die until you have won some victory for humanity" ~ Horace Mann


artist guy
Veteran Member


Date Joined Jan 2010
Total Posts : 1373
   Posted 1/22/2010 2:05 AM (GMT -7)   

when I had my first obstuction I had to have surgery to remove 9ft.I was good to go in 8 weeks. I was 21 then

59 now 2 other resection surgeries between 21 and 59


artist guy


Irishmom4
Regular Member


Date Joined Sep 2008
Total Posts : 457
   Posted 1/22/2010 4:40 AM (GMT -7)   
I had an open incision and was back to work at 6 weeks.
Elizabeth
Dx'd with Crohns 1984
Polycystic kidney disease in 1996
Bowel Resection surgery 2006, Now on Asacol, Endocort, Prednisone, Imuran, Folic acid, and Enalapril.
 


artist guy
Veteran Member


Date Joined Jan 2010
Total Posts : 1373
   Posted 1/22/2010 8:24 PM (GMT -7)   

hey misscris, ny surgeries were obsturction and elective, the elective was to prevent obstuction. I felt so good after i healed it was amazing. until it started to flarethat was 1989, started flaring again 1995. so far no surgery planned. just meds and diet and exercise, serious mountain biker.   take care keep me posted

  curt


artist guy


MissCris
Regular Member


Date Joined Jun 2006
Total Posts : 321
   Posted 1/22/2010 9:08 PM (GMT -7)   
Well I managed to get an earlier appointment because of a cancellation so I will hopefully know more on Monday. I appreciate everyone's responses. I feel like I have a much better idea of what I want and what to talk about with the doctors.
"Be ashamed to die until you have won some victory for humanity" ~ Horace Mann


spacytracy
New Member


Date Joined Jan 2010
Total Posts : 2
   Posted 1/30/2010 2:20 PM (GMT -7)   
I'm so glad this thread is here. I'm in the same boat right now, waiting for Dr to tell me what his plans are.
My issues in a nutshell:
10 years with Crohns, have a J-pouch (originally had a dx of UC)
Past fall, had at least 6 obstructions, twice hospitalized.

Had another obstruction last week, Surgeon said, that's it, lets schedule surgery. Surgery was scheduled for next Tues. Well, he wanted to be 100% sure of what he was dealing with, so I had a CAT scan. Showed stricture and narrowing.
Had a pouchogram on Wed, showed stricture and narrowing. However, 2 weeks ago he did a scope and saw no stricture.
So I have another scope on Monday to see what's going on.

Complication is that the diseased area is very close to the opening of my j-pouch and he does not want to damage the pouch. This is coming from a top surgeon who came from Mount Sinai in NYC.

Sigh. I hate being in limbo and as stupid as it sounds, I am half tempted to just eat something stupid so he'll just do the darn surgery. (dont' worry, I wont. But I think about it!!!)
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