Surgery-To have or not to

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kgirlie
Regular Member


Date Joined Jan 2008
Total Posts : 101
   Posted 2/4/2008 9:46 AM (GMT -7)   
Hi All,
 
I know a lot of you guys have had a bowel resection. I am wnting one over steroids only because I can't function in life. I am not able to work full time, take care of my kids, eat, or sleep. My husband is FANTASTIC, but it is taking a toll on him to run the house, earn the money, take care of me, and we can't enjoy marital relations. Any suggestions? Is this what you guys would do? Please give me advice.
 
Thanks,
Kgirlie
 
27 years old, mother of son 3, daughter 6 months dx in 2001 w/CD.

MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 2/4/2008 10:02 AM (GMT -7)   

IMO, there's just not enough information here to judge. Have you tried some more potent drugs like Remicade or Humira or even 6mp? Is there medical evidence of stricture or fistulas in an area that could  be resected? Has your GI recommended resection?

In general, the consensus on this board seems to be that resection is a last resort, since in most patients CD returns in another area in time. The best advice I have seen is to assess all possible options, get a trusted medical opinion and proceed from there, with surgery as a best option only if and when you have exhausted all other options.


Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 2/4/2008 11:56 AM (GMT -7)   

Surgery won't cure your crohns, you could be sick again within days or weeks of surgery. Some people go into remission for a few months, few go into remission for years. Once they take bowels out, they never grow back and you can't have optional surgery every time you get sick or you'll end up with short bowel syndrome. Surgery is an absolute last resort.

Have you tried imuran? It takes a few months to work, but helps alot of people. Probiotics and eating a natural diet also help crohn's symptoms.

You can try a special diet like The Maker's Diet or the Specific Carbohydrate Diet. Most people who give them a shot for at least a month find great improvements with their crohns. Just keep in mind not to eat anything that can obstruct, try cooking and pureeing or mashing. (ie: fruits or veggies especially). 

You could also try more potent drugs like remicade. There are always risks, especially long-term, even with imuran and steroids.

Obviously, if the steroids aren't helping your crohns, you need to try something different: new meds, diet changes, natural remedies, or a combination of all three.   

 


belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 2/4/2008 1:23 PM (GMT -7)   
Kgirl, everything mentioned above is great advice, but I'm not sure I understand your situation.

you say you want surgery over steroids. Are you on steroids now and have no quality of life? most people get relief from crohn's symptoms on steroids. The problem is that the drug has known health risks when taken regularly so it is usually reserved for short term use just to get the crohn's under control or to allow another class of medication time to work.

If you are on steroids and getting no relief it is possible your problems stem from a crohn's stenotic stricture, which is basically a build up of scar tissue. If it is scar tissue causing your symptoms it may be time to get a surgical opinion. Maybe a balloon dilation or stricturplasty might help your symptoms.

If you aren't currently on medication, you need a thorough medical work-up and a management plan that goes way beyond just steroids. You need to get your life back, either with medications or with surgery.

Although it is true that surgery should only be used when medical options have run out, there are times when it is counter-productive to continue through the heirarchy of medical therapy until you reach the immuno-modulators like Remicade. If you have a severely stenosed segment of bowel, especially if it is confined to one segment of the bowel and not large, it makes no sense to drag out a regime of increasingly potent drugs because they will not reverse the symptoms of a severe stricture if it is caused by scarring not inflammation.

This is highly individual decision. What is tolerable for one person may not be tolerable for another with different life circumstances. You sound like you might be at your wits end. You need to be absolutely clear with your health providers about the degree of limitations you are experiencing from crohn's symptoms and insist that all efforts be made to deduce what you are dealing with. When you know the facts you will be able to makethe choice that's best for you, whether it is a further course of medical therapy or a surgical intervention.
Belleenstein:

30+ years living with Crohn's.


kgirlie
Regular Member


Date Joined Jan 2008
Total Posts : 101
   Posted 2/4/2008 2:00 PM (GMT -7)   

Thanks for your advice. Here is a little more detail. I was on 9 mg of entocort and it did nothing. I was put on prednisone today. I also take 4 g of Pentasa, 20 mg Lexapro, 30 mg prevacid, 25 mg amytrptaline, and 10 mg of Maxalt. CD has been a hard adjustment for me mentally and physically. I struggle losing weight (I just had a baby 6 motnhs ago), I am constantly tired, my bowels have a mind of their own, and I feel like it is getting too hard to be sick. I also know that I have the personality that pushes myself too hard and I don't allow myself to be sick. What is so hard is that I am in so much pain and it has been so long. I can't remember the last time I could play with my kids and be effective at work. I am so scared my boss will be upset because I miss one to two days a week out of my five day work week. THe reason I didn't want to go on Prednisone was because I struggle mentally as it is and when I read up on the side effects it said weight gain, anxiety, sleeplessness, and so on. I am a strong person, but it is getting to where I need a break. I did allow my doctor to put me on 30 mg of prednisone a day and she said she wants to try it for a month. I don't want surgery, but if it means I can have another child soon and not have my body effected byt the drugs, than to me surgery is a small sacrifice. I guess I don't know what I want. I appreciate everyone on this forum because I have learned more about CD and my options in the last couple weeks than in my entire life. I am on a low residue diet and I am learning to rest more. I appreciate your comments because I finally feel like I have friends that can relate to me and my life. I have many friends, but none of them have CD and although they are supportive, you guys know my life and the challenges of CD. I am looking into remicade, imuran, and seeing the effects those have. My mom is currently on imuran and is doing well. Again I welcome advice on anything. I am even considering working part-time. I will talk with ya'll soon.

Thanks!!!!

kgirlie


Mormor Vicky
Veteran Member


Date Joined Mar 2007
Total Posts : 684
   Posted 2/4/2008 2:24 PM (GMT -7)   
KGirlie, I'm probably one of the few that had the resection first. Didn't find out I had Crohn's until the opened me up to repair a fistula to my bladder. If it wasn't for that I'd probably be still trying to find relief through meds instead of surgery. I have to admit that I do feel better than I have in years but I still have bouts of "d" and fatigue off and on so surgery isn't a cure all. Also, I try to avoid pred as much as possible because not only does it cause physco affects on me but it also gave me steroid-induced diabetes.
Vicky / 48 years old
DX'd with Crohn's during a resection August 2006
DX'd with Steriod induced Diabetes November 2006
Considered in Clinical remission but have minor signs of disease activity
 
Daughter (27) also has Crohn's since she was 12.
 
Currently on 4000mg of Pentasa only for Crohn's
No longer able to take 6-MP because of Bone-Marrow Suppression
Cymbalta, Metformin, Lipitor


chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 2/4/2008 6:43 PM (GMT -7)   
I would certainly give remicade or imuran a try before I opted for surgery. Pentasa did absolutely nothing for me.
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