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Surgery vs. Med. Dependance

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Crohn's Disease
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Posted 5/29/2009 8:48 PM (GMT 0)
Why is surgery used as a last resort? What is so bad about a resection? I see so many people who are dependent on steriods or who take remicade or humira (with the many risks they present). I guess what I am asking is why are those options more desireable than surgery? I understand the risks associated with "going under" and post op infection but what other risks are there? I have only been dxed for  a few months (and I do have an abcces) but my doc is recomending surgery over a long courses of prednisone or bio drugs- why? Is he wrong or right? Is there something I am missing? 
Posted 5/29/2009 8:50 PM (GMT 0)
Personally, I am afraid of surgery because
1) It might not work anyway
2) The risks you already mentioned
3) No matter what, Crohn's can always come back into the remaining healthy tissue

and (this one stems from vanity)

4) I have already had one abdominal surgery for a pregnancy, and it has changed the shape of my body. I suppose I really don't want anymore of that.

Oh, and the hospital bill. I know meds are expensive, but I still haven't paid as much for them as I owe for my surgery.
Posted 5/29/2009 9:11 PM (GMT 0)
L-
1)I don't understand how it can not work. Do you mean that my symptoms might not stop at all after? I understand that it can and almost certainly will come back but a few years of possible remmission at this point seems worth it.
2) I see the risks of remicade and othe bios and it scares me much more than going under or post op infection. I guess I am so scared b/c my boss' sister is dealing with lymphoma due to a bio. Anyone know stats on how many people die from lyphoma or other illness' due to these meds? Prednisone I refuse to get dependent on. (my doc totally agrees and hates the stuff)
4) So does prednisone right? Have you been on it long? Has it adversly affected you in any way?
5) I am so very lucky my husband is in the Marine Corp and all costs are covered. No copays, deductibles or prescrition costs.

I guess at this point I am looking for risks I have not already thought of. I am weighing my options b/c I know I need to before surgery but I just can't see why not to have it.

L-thanks for your reply. I appretiate your it very much
Posted 5/29/2009 9:20 PM (GMT 0)
I have just heard horror stories about leaving surgery and feeling terrible. I know it's very unlikely, but I afraid nonetheless..

I can understand being wary of biologic side effects, but I am on humira and have been since September with no side effects save some fatigue and the occasional head ache. I think that probably contributes to my decision really, but if I developed something more serious then I would definitely be on the same page as you. I just hope that doesn't happen..

I've been on prednisone for a year now, and it changed me physically a lot at first, but I actually look fine now. There is a little puffiness in the face, but no one has noticed except my doctor since he has seen me intermittently from the beginning of this whole ordeal. My main concern with the pred is osteoporosis so I am trying to wean off of it, but I haven't had as difficult a time with it as others.

I guess I can't really think of too many risks not already mentioned. Incompetent hospital staff maybe? But I have a really great hospital here so I can't honestly say that would be a factor in my denying surgery.

I think it could also just be (albeit perhaps irrational) a fear of surgery itself. There is no telling what can happen and no guarantee it could fix anything. I know this is the same with any other treatment, but maybe too it's that the medicine, regardless of possible side effects, is just more accessible than the tedious process of surgery.
Posted 5/29/2009 9:26 PM (GMT 0)
You may have the same problems after surgery. Unfortunately you have a 50% chance of having the disease come back within 2 to 5 years. Then you would be in the same spot as you are now, but with less gut. Some people have absorption problems after surgery, some have gut motility issues, some get strictures.

Of course, some people get many disease free years from surgery.

I saw a surgeon in February and he recommended Humira over surgery. But every case is different...
Posted 5/29/2009 9:28 PM (GMT 0)
What is gut motility?
Posted 5/29/2009 9:44 PM (GMT 0)
Some get chronic diarhea. Usually the body adjusts to having less gut to pass food through, but for some it's a problem. And unfortunately the more surgeries you have the more likely this is. But like I said for many the body can adjust. I remember someone posting once that their bloating got much worse after surgery.
Posted 5/29/2009 9:47 PM (GMT 0)
tall girl,
Yes you can have the same symptoms after surgery, or you could go into remission.

I have had 2 resections. One went well and gave me quite a few years of remission then a few more with just mild symptoms.
The second one was a very bad experience and I had all the same symptoms within a few weeks. The very high doses of prednisone, Imuran and Humira didn't put me in remission so I had the surgery. Now I am hoping that the mix of surgery, imuran and starting Remicade soon will put me in remission. I am not going in for another surgery anytime soon. I will wait as long as possible to have another surgery.
I will take the bios as long as I can just to have the better quality of life.
Posted 5/29/2009 10:08 PM (GMT 0)
One other factor to keep in mind, is that the more resections you have....the less intestine you are left with. This may not seem like a big deal, but at some point it becomes impossible to resect (especially if it's large intestine that they're removing) and then you end up with an ostomy bag. That's exactly where I'm at right now, and only because I've failed all medical treatments from Sulfa based meds to Humira. Surgery can be a great option...especially in a case where it's the last or only option. But I think most patients and most gastroenterologists will tell you it's better to keep as much of your bowel as possible, as long as you can, cause you never know what may come up in the future.

Also, I have to take iron supplements in the form of a disgusting fluid, and b-5 supplements via injection, cause I don't have enough intestine to absorb them properly.

Also, I had the surgery last July 25th, and still have periodic symptoms (less than one year).

Posted 5/29/2009 11:14 PM (GMT 0)

I am getting close to the surgery option.  I too asked why surgery was the last resort.  There were a couple of reasons.  The first, as noted in all the postings it that there is no guarantee of how long the remission would last.  It could be a number of years, it could be only a number of months.  The second, which was also mentioned, is that you only have a certain amount of intestine.  So they don't want to remove any until they have to. 

That being said, I am getting closer to surgery because the meds haven't worked well.  I have developed high blood sugar and osteoporosis due to the prednisone.  I feel lousy all the time, and have lost almost 50 pounds.  I now have abscesses and at least one fistula.  I am scheduled for another CT shortly.  If the abscesses aren't gone, we are likely to do surgery.  If they are gone, I will be trying Remicade.  I have not done biologics yet.  My guess, based on how I feel, is that the abscesses are not gone, and I will be doing surgery and then Remicade.

Good luck to you.

Posted 5/29/2009 11:24 PM (GMT 0)
Thanks Beth. Good luck to you too
Posted 5/30/2009 12:10 AM (GMT 0)

Hello Tall,

I do not post here often but I saw your question.......

My husband has had 3 surgeries all for obstructions.  His last surgery was in 1993 and he has done very well.  Not on any meds at this time as they were not using much except Prednisone in 1993 and he has not had a flair that needed meds up to this time.  He does have a stricture and he will most likely be a surgical candidate again in the future. He has had Crohns for 33 years.  His first surgery was for a ruptured small bowel.

Each person is different and knowledge is powerful when it comes to making decisions re your health care so gather all the info you can and then talk it through with your physician.  Never be afraid to obtain a second opinion.

The members here are very wise and caring so stick with this forum.  You will find much support here.

Kitt

Posted 5/30/2009 12:24 AM (GMT 0)
Dear tall girl,

 

It looks like I'm in the same position as you.  I'm hearing from some people that I should try Remicade or Humira, but the possible side affects of these seems unacceptable to me.  I'm leaning towards surgery.  I'm also thinking that having surgery sooner rather than later might mean an easier recovery, and not allow the disease to worsen before surgery.  I would prefer not to deal with any of this at all, but that is apparently not an option.  I need to hear about some positive results.  By the way, this is my first post.

Posted 5/30/2009 12:39 AM (GMT 0)
welcome stinky farts..lol you go on my favorite nickname list
Posted 5/30/2009 2:17 PM (GMT 0)
I have had two resections and did NOT have the disease come back. The reason I had the first resection was because I was completely obstructed, nothing could get thru. By the way, this was an emergency resection. The second was not because of disease return, but because I developed another stricture at the reconnection site and it was causing really bad nausea. That was 4 years ago and I am doing well still today. I do have to deal with some changes the surgery caused, I can't eat alot of the foods I used to be able to, but overall I have been in remission since. I will tell you also I have the stricturing type of Crohn's Disease. In my case I can not go on to Remicade because it causes rapid healing and can cause scar tissue to develop and could create more blockages in me. Hope that helps.
Posted 5/30/2009 3:32 PM (GMT 0)
Hi i too had a resection in 93 and to this day it has never returned in that area. In jan had 2 resection for 2 stricture in small bowel and for a fistula had to have surgery as i was losing weight drasticallydue to output of fistula and not being able to eat due to strictures after op was put on remicade to help close fistula (Main reason for it) but got a reaction on second dose it was good while it lasted i had instant energy and felt so well after the 1st dose, really sad i can't continue with it .Currently on

no meds for the crohns on a washout period at the mo  hopefully will get something on the 26th June Have never been on steriods in all the time i've had crohns i'm not against them  but the docs don't seem to be that keen to put me on them Bev x

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