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What are your thoughts on Crohns and surgery?

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Crohn's Disease
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Posted 4/15/2009 4:19 AM (GMT 0)
Hi Guys,

I've been on and off the board these few years being sick and well. Lately I have a narrowing that could borderline on a blockage eventually. Some days I am fine, other days I am bloated to no end. I am on entocort and my recent DR visit he proposed to think about for the future possible surgery as the entocort is only helping a little. I was wondering what everyones thoughts were on Surgery. Would you do it? Did you do it? Do you regret it, would you do it again? Is it worth it or will it make it worse? I know it's an individual thing but in general I think it'd be interesting to hear what's going on in your minds about this topic. Also, any type of Crohns surgery but of course in my case I am looking at a resection or stricterplasty.

Thanks and have a good day!
Randi yeah
Posted 4/15/2009 6:54 AM (GMT 0)

Hi Randi,

I was only diagnosed in May of 2008 with Crohns and had surgery in November.  I had a resection - 18 inches of my small intestine removed.  I was so miserable that I felt that even if I only had 6 months of relief it would be well worth it.  It has been.  I still have symptoms - the diarrea, acheness and some other stuff, but the pain is gone.  I couldn't live that way.  It was a struggle for me to function everyday and working and having 4 kids I couldn't keep living like that.  Like you said - it is an individual thing and being only recently diagnosed I wasn't sure if I should do it or not, but none of the meds worked for me.  I am glad that I did it.  To be honest - the surgery was a piece of cake compared to dealing with all the pain.  Good luck in your decision.

Posted 4/15/2009 8:15 AM (GMT 0)
I have not had to have surgery as of yet. I do have a narrowing that comes and goes and kept me from eating for 12 days last summer, only drinking Ensure to keep me alive. I have tried almost every category of drugs and now am on Humira, prednisone, entocort, and mesalamine enemas as well as a bunch of other stuff. I would try to get the crohn's under control by any medications possible first, and if none of them work, surgery should be the last option because it may help for awhile, but there can be a lot of complications and it always has the potential to come back in another spot. Plus, you don't want to end up with short bowel syndrome as there are only so many surgeries you can have until things just don't work anymore. Good luck with your decision! By the way, does your stricture cause a lot of pain or just the bloating?
Posted 4/15/2009 9:34 AM (GMT 0)
randi, only you can decide. when you get to the point of not wanting to suffer with the pain etc.. then it will be time.. yes , it can and probably will re-ocur at the same spot, but you should have relief at least for a while.. i have had many surgeries for crohns and dont regret any of them even the way i am now. sure one or two went bad, but thats not the norm. it actually should be better if its done now when its pre planned and well thought out , rather than later in an emergency and all the trouble that goes with that, like maybe not being able to pick your dr etc.. good luck randy
Posted 4/15/2009 11:39 AM (GMT 0)
After having had surgery in Feb 2009 I don't regret it all. It was a planned surgery and my surgeon told me after the surgery that I would have had emergency surgery sooner than later. I would rather have planned surgery like randynoguts said and not have complications. Will Crohns come back to me, I don't know. I hope not but at least it is gone for now.

Think long and hard before deciding.

Good Luck!

 

Posted 4/15/2009 1:30 PM (GMT 0)
I would base your decision for surgery on the quality of life. If you are miserable and no meds are helping, then I believe that is the time to choose surgery. I have had 2 resections and I don't regret either one. Because of the relief I received and because how poor my quality of life was before the surgeries. Good luck!
Posted 4/15/2009 2:03 PM (GMT 0)
I had to have surgery...but i would put it off as long as possible. In my case I have had surgery every 7-8 years. I asked about the pattern of every 7 years having more surgery and was told that it was a common pattern. Basicially the surgeon told me that when they operate on the ilium they are finding that the scar tissue develops and at about the seven year mark the scar tissue becomes a problem in people with crohn's. May not happen to you...maybe the methods have improved..but I would ask!
Posted 4/15/2009 5:34 PM (GMT 0)

H Randi,

its your decision i had surgery in 93 for a resection and january this year for two obstructions and a fistula and i don't regret any of it the op in 93 put me in to remmision until last september so i had no drugs and no consultant for all those years! Wishing you well in whatever you decide keep in touch and let us know. Bev x :-)

Posted 4/16/2009 2:44 AM (GMT 0)
All has given good advice....just wanted to say I don't regret my surgery for one minute. However, if I were to get to the point of 2-3 possible surgeries I probably would be more hesitant or at least delay it a bit more. On the opposite end of the spectrum, my intestines were so infected, prior to surgery, my pelvic floor was full of puss and I was borderline septic. This delayed the surgery for yet another week as they tried to get the infection under operative control. Good luck with your decision and know you are in our prayers.
Posted 4/16/2009 9:13 AM (GMT 0)
I haven't had a resection yet, only fistula surgery. For me it will have to be as a last resort, when I can't handle it anymore, and there is nothing else to try. It's scary to me because you can't get it back once it's gone, and the less we have the worse that is.

But I think there does come a time when it's necessary, and I think each person knows when they've hit that point. When the pain and suffering is too much, and the risks are too big to not have it done.
Posted 4/16/2009 6:45 PM (GMT 0)
I agree that it's a quality of life thing but I have to say I don't quite understand the obsession some have with hanging onto intestines that are causing nothing but misery. The only thing I would say is that, if possible, have the surgery done at a teaching hospital. Community hospital affiliated surgeons simply don't have the experience to handle complicated crohn's patients.
Posted 4/18/2009 10:50 PM (GMT 0)
I have also had surgery two times, once in 1999 and again in 2005. I have been happy with the results each time but the recurrecne seems to come sooner that later now. In 2005 I was in the hospital 7 days before my doctor and I agreed the obstruction would not go away. I have recooped well each time. Now in 2009, I am having problems again and not happy!! I am on 6mp 150 mg. and entocort plus sulfasalazine and now have many abnormalities in my labs. I think I am too high on the 6mp. I see md on Thursday 4/23. Hope he has some good ideas. It is a personal choice to a point as to have surgery but if the bowel perferates it would be a much bigger problem. Hang in there
Posted 4/21/2009 6:55 PM (GMT 0)
Surgery followed by LDN therapy to prevent recurrence would be workable. I've had six surgeries and can't afford any more I'm on LDN now to prevent a Crohn's recurrence.
Posted 4/22/2009 12:07 AM (GMT 0)
Hi I am one of the ones that am glad I had the resection and was a must do for me quality of life was really poor and am doing so much better now... they took about 12 inches and a bad section that was causing fistula problems from small to large bowel.. and a year before that I had big abscess problems and abdominal surgery for that .Meds ween't working for me .Wishing you the best with your decision.lol gail
Posted 4/22/2009 12:34 AM (GMT 0)
I just had surgery about 3 weeks ago, so I am still recovering.  It was my first surgery, and well, after they said that the chances of devoloping cancer was hugely increased incase due to the damage done and the absesses I was in the hospital fight I decied it was time for me.  So far I am doing well.  Still having some healing pain and adjusting to my new bowel feelings( not everyone feels it.  I am super sensitive to my insides) But unless it is an emergancy it is a personal choice that needs to be made.  Good Luck.
Posted 4/22/2009 6:43 AM (GMT 0)

Jen77 said...
For me it will have to be as a last resort, when I can't handle it anymore, and there is nothing else to try. It's scary to me because you can't get it back once it's gone, and the less we have the worse that is.

Jenn, I am not 'picking on you', but I did want to address this particular feeling/reason and Cleo had also mentioned it.  I just wanted to expound on it.

I had been suffering almost constantly for 6 years in a flare that would not come under control no matter what we tried.  It had worsened to intense pain and after every bowel movement, I would walk down the hall holding my left side so nothing would jar it and sit carefully on the couch until the waves of pain receded.  Any movement could bring on a bowel spasm.  Bending forward, shifting my seat, getting in/out of a car or up/down from sitting/laying.  It was miserable.  I was miserable.  My family didn't know what they could do to help me, and there was nothing they could do except supportive care. 

I and everyone around me felt helpless.

I finally agreed to surgery, like many, when I could no longer stand the pain and the toilet enforced prison of my home.  I had finally reached the point where the pain and inconvenience of my life outweighed my fear of the permanance of surgery.

My thoughts now:  If I have an option of surgery to remove a permanantly damaged area...I will do it.  That area does me NO GOOD if it is so diseased it certainly cannot function as it was meant to...and I would rather it be GONE instead of allowed to grow and cause me even more pain and distress. 

If it cannot do the job it was designed to do...there is no reason for me to keep it.

heidi

Posted 4/22/2009 12:08 PM (GMT 0)
i had 3 surgeries in 98-99. Since then I have had to many flare and remission periods to track. My case was very severe as it was undiagnosed for many many years and everyone reacts differently to drugs and surgery. Right now i am having an extremely bad flair due to a stricture right on the same spot where they removed intestines previously. This is the 3rd time that this area has become so inflamed that i nearly become hospitalized for malnutrition. My gastro mentioned surgery and i am considering it because it brings much longer term relief and much more complete releif than meds alone. The only thing making me hesitate is the fact that the disease has a tendency to come back especially in weak spots like scar tissue from surgery. I am waiting to see if i can gain any weight on steriods, but you need to weigh the long term benefits and risks to the short term (short in comparison) risks and benefits. Just dont be surprised if you have surgery and it comes back i the same spot. it doesn't always happen, but more than half the time.
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