Surgery vs. Med. Dependance

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tall girl
Regular Member


Date Joined Apr 2009
Total Posts : 68
   Posted 5/29/2009 1:48 PM (GMT -7)   
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? 
25/ Female DXed Crohn's 1/09
Many diet restictions

Entecort, Tramadol (for pain), Kapadex, Fish Oil, Probiotics, Cipro and Flagyl for an abcess

just stopped Pentasa after 1 month

Having a resection in 3 weeks

Still confused and sometimes angry/frustrated

However I am learning to laugh at all this more often


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 5/29/2009 1:50 PM (GMT -7)   
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.
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking: Prednisone 10 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, prenatal multivitamin, humira every other week, and Align probiotics prescribed by my GI.
Diet almost completely without refined sugars, wheat, flour, gluten, high lactose dairy, and/or junk food in general.
bonniegriffith.blogspot.com/
Learning how to live again.
"He who has a why to live for can bear with almost any how."


tall girl
Regular Member


Date Joined Apr 2009
Total Posts : 68
   Posted 5/29/2009 2:11 PM (GMT -7)   
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
25/ Female DXed Crohn's 1/09
Many diet restictions

Entecort, Tramadol (for pain), Kapadex, Fish Oil, Probiotics, Cipro and Flagyl for an abcess

just stopped Pentasa after 1 month

Having a resection in 3 weeks

Still confused and sometimes angry/frustrated

However I am learning to laugh at all this more often


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 5/29/2009 2:20 PM (GMT -7)   
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.
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking: Prednisone 10 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, prenatal multivitamin, humira every other week, and Align probiotics prescribed by my GI.
Diet almost completely without refined sugars, wheat, flour, gluten, high lactose dairy, and/or junk food in general.
bonniegriffith.blogspot.com/
Learning how to live again.
"He who has a why to live for can bear with almost any how."


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 5/29/2009 2:26 PM (GMT -7)   
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...
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. 9mg prednisone. Udo's Choice Probiotics (30 billion). Can't tolerate any iron supplements or infusions.

Tried SCD, didn't work, now avoiding gluten and dairy.


Go Saskatchewan Roughriders!


tall girl
Regular Member


Date Joined Apr 2009
Total Posts : 68
   Posted 5/29/2009 2:28 PM (GMT -7)   
What is gut motility?
25/ Female DXed Crohn's 1/09
Many diet restictions

Entecort, Tramadol (for pain), Kapadex, Fish Oil, Probiotics, Cipro and Flagyl for an abcess

just stopped Pentasa after 1 month

Having a resection in 3 weeks

Still confused and sometimes angry/frustrated

However I am learning to laugh at all this more often


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 5/29/2009 2:44 PM (GMT -7)   
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.
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. 9mg prednisone. Udo's Choice Probiotics (30 billion). Can't tolerate any iron supplements or infusions.

Tried SCD, didn't work, now avoiding gluten and dairy.


Go Saskatchewan Roughriders!


westat
Regular Member


Date Joined Jun 2008
Total Posts : 167
   Posted 5/29/2009 2:47 PM (GMT -7)   
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.
Dx with Crohn's in 1997 after 5 years of worsening symptoms.
Resection a few months after dx after 1 month on TPN and IV steroids.
Resection October 2008.
Also have severe asthma.
Fibromyalgia (allergic to Lyrica)

Tried: Pentasa, Cholestyramine, Asacol

Presently taking: now on Imuran, probiotics, calcium, B12.
For asthma I take Advair 500, singulair


Megz
Regular Member


Date Joined Dec 2006
Total Posts : 33
   Posted 5/29/2009 3:08 PM (GMT -7)   
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).
26 year old female. Diagnosed with CD in 1995. Resection in 2000 due to perforation during a colonoscopy. Currently taking Humira once a week, Lyrica for pain mangement with Percocet for breakthrough pain, and Wellbutrin.


bethlaurie
New Member


Date Joined Apr 2009
Total Posts : 5
   Posted 5/29/2009 4:14 PM (GMT -7)   

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.


Diagnosed  with Crohn's Sept. 2007. 
 
Currently on Pentasa, 6MP and just started Entocort in place of Prednisone.  Looking to move to a biologic (not sure which yet) in the next month.


tall girl
Regular Member


Date Joined Apr 2009
Total Posts : 68
   Posted 5/29/2009 4:24 PM (GMT -7)   
Thanks Beth. Good luck to you too
25/ Female DXed Crohn's 1/09
Many diet restictions

Entecort, Tramadol (for pain), Kapadex, Fish Oil, Probiotics, Cipro and Flagyl for an abcess

just stopped Pentasa after 1 month

Having a resection in 3 weeks

Still confused and sometimes angry/frustrated

However I am learning to laugh at all this more often


stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 5/29/2009 5:10 PM (GMT -7)   

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

 


 

Kitt, Co-Moderator:
Anxiety/Panic, 
Depression,  & 
 
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stinky farts
New Member


Date Joined May 2009
Total Posts : 2
   Posted 5/29/2009 5:24 PM (GMT -7)   
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.
Stinky farts
39 yrs. old
dealing with UC for 10 yrs.
currently on Lialda
recently told by doc that UC may be Chrohn's


aoccc
Regular Member


Date Joined Feb 2005
Total Posts : 455
   Posted 5/29/2009 5:39 PM (GMT -7)   
welcome stinky farts..lol you go on my favorite nickname list
SCD since 01, remission since 01, occasional random junk food breaks :)
No meds ever.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 5/30/2009 7:17 AM (GMT -7)   
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.
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
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 and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

crohnielass
Veteran Member


Date Joined Mar 2009
Total Posts : 1118
   Posted 5/30/2009 8:32 AM (GMT -7)   
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
Diagnoised with crohn's at 13 now 42
resection, right hemi 1993
In remmision from 93 till last sept with no meds or docs
2 resections small bowel  and fistula jan 09 and given temp stoma
 No maintance drugs as such on B12 shots,iron syrup,loperimide 20mg  EScitalopram 4 anxiety.

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