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Crohn's Disease Forum » Surgery » Is surgery bound to be required for everyone?


02-11-2012, 01:43 AM   #1
Dwy
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Is surgery bound to be required for everyone?

Reading through a lot of these threads and many people eventually get surgery.. a bit worrying.

I was told my case of crohns is mild. So I'm looking to those who have had the same crohns for much longer than me.. did you eventually need surgery and why?
02-11-2012, 02:01 AM   #2
Slim Johnson
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I need surgery due to medicinal interventions being ineffective. It is not uncommon for people with CD to need surgical therapies. IIRC, the statistic is that ~60% of patients will need surgery in their lifetime. Of that 60% about half of those patients need additional surgeries.

I had hoped that with proper diet, and medication; I could avoid going under the knife. Sadly, after five years of diligent efforts, I am overdue for an operation to remove the diseased intestine from my body. What's worse, Crohn's is not cured from surgery, whereas Ulcerative Colitis can be cured/eliminated with surgery.

That being said, while I hope you can beat the odds, don't hold your breath...
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02-11-2012, 02:07 AM   #3
Dwy
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Is surgery just because you can't go on with the pain? To be honest I think I could put up with a fair bit before letting them open me up and cut my intestine out. Are you having it all removed? I don't think I could ever cope with the bag solutions so many people have to endure.

Thanks for posting.
02-11-2012, 02:20 AM   #4
Slim Johnson
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I wish it were so simple as just pain..

I have more than a couple feet of scarred intestine, as well as at least one stenosis at the terminal ileum. My cecum is trashed, regularly becoming occluded.. I also have several internal fistulae going between different parts of my intestine, and colon. Not all of it will be removed, however until the surgeon makes his incision, I won't know how much I stand to lose. I also fear having an ostomy.. Not only am I vain, I am concerned with the risk of infection, and the dependance on doctors it would force upon me.

Pain has been a way of life for at least three years now, and lately the oxycodone is not even touching it!
02-11-2012, 02:33 AM   #5
DustyKat
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Hey Dwy,

Pain is often a symptom but not always a cause to have surgery. Depending on where your Crohn's is located it may be that you have narrowing caused by inflammation and scarring and the the risk of obstruction and perforation becomes too great. Or it may be like my son, a fast diagnosis of mild to very mild Crohn's but within 3 weeks he developed complications of a fistula and abscess and surgery was the only option to alleviate and the treat the problem.

Dusty. xxx
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02-11-2012, 03:08 AM   #6
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It's something that worries me too, but I accept it's an inevitability after seeing some of the photos of inside me. No full strictures yet but some impressive bits of scar tissue that is hard to describe. But here is a try the scared stuff is semi-circle/u-shaped so if looking at a cross section it looks like half circle healthy half not. So I suppose some day it will affect the whole cross section area and need surgery. Just hopefully a looooooong time away.
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02-11-2012, 03:10 AM   #7
Susan2
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Is surgery just because you can't go on with the pain? To be honest I think I could put up with a fair bit before letting them open me up and cut my intestine out. Are you having it all removed? I don't think I could ever cope with the bag solutions so many people have to endure.

Thanks for posting.
I think that most people who have had Crohns for some years would have a fairly high pain tolerance and very few would have surgery just because they couldn't go on with the pain. In most cases, increased pain is directly related to increased incidence of ulceration, fistulas, blockages and so on. In my case, by the time that I agreed to surgery, the whole area around my rectum and anus was a rotting mess! In fact, I had left it far too late and so the area of incision took a long time to heal.

I, too, thought that i couldn't deal with a bag - not physically, but psychologically. And here I am 12 years later, just planning a trip to Botswana. It's not all a bed of roses, but, if the need does arise, you will deal with it.
02-11-2012, 03:35 AM   #8
Samboi
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My CD is also considered mild and has been exceptionally well controlled for 20 years.
I've only really had two major flare ups - ten years apart.
I nearly had surgery for a bag 10 years ago, but managed to avoid it by having an infliximab infusion - which healed my terrrible fissures literally overnight.
This time - it was out of the blue. My rectum and anus was so ulcerated - I could not pass anything without a shot of morphine. It couldn't heal and frankly - it was physically and mentally traumatic. I became very sick very quickly.
I had some unecessary surgery for what was though to be a thrombosed hemy. A week later, another EUA - the next day - an ileostomy. By that time - I would have begged for it. It's been a slow recovery, and I have a long way to go - but without it - I would not have survived.
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02-11-2012, 07:24 AM   #9
nitty
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Hi, Dwy

I'm in the same boat as you, having recently been diagnosed with mild CD restricted, we think, to the colon. Reading many of these posts scares the pants off me.

When I was a nurse I often had to help people with new stomas to change/empty the bags, and I felt it was one of the only things in life that I couldn't bear to have to go through (and I worked mainly with people with gangrenous limbs which usually ended up amputated - easy in comparison, I thought!). I think in most cases though, if it comes to living with unbearable symptoms, or dying, then a stoma can be accepted as a means to a new life. One of my patients was so badly affected that even a stoma was impossible, she had no functioning gut left at all, and I know that she would have done anything to have had the chance of one if she could.

What I have learnt from reading everyone's experiences, is that although my CD is mild, and I have not got it into remission yet, I HAVE to take it seriously and look after myself if I want the best chance of avoiding surgery of any kind.
That's NOT to say that anyone who has had surgery could have done anything else to prevent it. For many it's inevitable no matter what you do. But I know I'm quite a lazy person, prone to complacency, and I realise now that I can't afford to be when it comes to this nasty disease. I have to count my lucky stars that it is mild, and do my best to keep it that way!
02-11-2012, 10:10 AM   #10
chrisnsteph1022
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I was diagnosed in 2003 with mild Crohn's. After a year, I was in remission. Six years later, it came back as severe Crohn's. It has taken over a year to get it back under control. But so far, no surgeries. I do not have any complications like fistulae, strictures or abscesses, so that helps. I just had a lot of inflammation/ulcerations all through my colon.

My GI told me 80% of Crohnies will eventually need surgery. Half of those will have more than one surgery.
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02-11-2012, 05:01 PM   #11
Samboi
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To be honest - I'm more freaked out about fistulae, abscesses and strictures than having a bag. I'm not sure how I would cope with a fistula!
02-12-2012, 12:34 AM   #12
outlier
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after going to a education thing from CCFA and hearing it was like 75% would need surgery it freaked me out as well. but the drugs have gotten better in only the recent time Anti-TNF agents are only about 10 years old so there full effect has not been seen. is my understanding.

I refuse to speak or do anything about my fistual. opps. I assume they saw when they scoped me and have the same not talking about idea i have
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