remicade verses surgery!!!

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Concerned mom!
New Member


Date Joined Jul 2007
Total Posts : 19
   Posted 2/3/2008 11:33 AM (GMT -7)   
hello everyone,
My daughter has been in the hospital for 5 days w/a drainage tube/ct on mon and hopefully
be able to come home. Gi wants to try remicaid in 2 wks after antibiotics/sugeon still thinks
she needs a resection....Been to mayo clinic and still ended up in hospital....for 7 mths has
had no relief from pain and been on predisone since july......My thoughts and prayers go out
to all of you w/CD it seems like we never get a brake......Just wanting some feedback please!!!
She is 19 and doesn't really want a scar but the pain has gotten so bad she is getting real
close to saying yes.........
Thanks to you all :)
Concerned mother.....

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 2/3/2008 5:40 PM (GMT -7)   

Hi and I am so sorry for your daughter, she is young and to have to be looking at making this decision is surely difficult for her.
You did not mention if Mayo suggested the surgery?  Wondering in you are in MN and if you are have you had her to the U of M?

I know you will hear both sides of the spectrum on surgery, versus diet and medication.  It is a tough decision but in the end with the inforamtion you have you can sit with your daughter and talk it through.  She may want to try the diet or meds first.  Again I am not the patient or the physician so I am only sharing my humble opinion and lots of support to you and your daughter.

Kitt


 
Kitt, Moderator: Anxiety ~ Panic  ~ Crohn's
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patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 2/3/2008 6:00 PM (GMT -7)   
If the true question here is "remicade verses surgery" , I would hands-down vote for the remicade. I had surgeons hovering over my hospital bed telling me they wanted to take my colon out and I refused. The remicade started to work for me immediately, and I got to keep all of my guts. I was only 22 at the time - a little older than your daughter - but young enough to know exactly how she feels. It is, of course, ultimately her choice, but you asked for opinions - so that's my two cents. Give the remicade a try. The scar from a resection should be the least of her worries - my biggest fear of resections is that they are rarely a long-term solution. Remicade might not be long-term either, but it's WAY easier on your body.

Best of luck to your daughter, and you.

NuffinButtTrouble
Veteran Member


Date Joined Mar 2007
Total Posts : 679
   Posted 2/3/2008 6:11 PM (GMT -7)   
Hi Concerned mom,

I am usually in the Colitis forum, but I was browsing around and saw your post...

I have the book "Breaking the Vicious Cycle" and it discusses the SCD (Specific Carbohydrate Diet), which has helped me tremendously. The diet is a little too strict for me to follow to the letter, so I follow a loose version of it.

Try having your daughter avoid all sweets/candies, cookies, cakes or anything with processed sugar it, including coke and fruit punch. Have her avoid milk as well as it also contains sugar...simply by me following this diet I have been able to stop Remicade infusions AND ALL ulcers have disappeared from my colon (and there were a lot, the GI was shocked). I'm not cured...that I know, believe me...but I have more energy, no joint pain and about 3 or 4 bm's a day.

I try to read the ingredients on everything and I avoid products that contain sugar/yeast because they seem to make my condition worse; you may need to experiment with her foods to see what makes her worse and what doesn't bother her.

I am of the opinion that if I can reverse the damage on my colon to a degree, your daughter can too...I have my life back no more 15 to 20 bm's.

:-)


NBT


Diagnosed with Ulcerative Colitis January 2007
Meds: Remicade, Primal Defense Ultra, Multi-vitamins (also iron, B12, Magnesium and Zinc), Flaxseed/Natures Bounty Fish Oil
Swanson Ultra Caprylic Acid (natural anti-fungal) 600mg x2 daily
Carrot & Garlic supplements (natural anti-fungal) x2 daily
Currently taking herbal meds in the search to regain full health.

Post Edited (NuffinButtTrouble) : 2/3/2008 7:04:32 PM (GMT-7)


edison01
New Member


Date Joined Feb 2008
Total Posts : 2
   Posted 2/3/2008 6:46 PM (GMT -7)   
Without knowing the specifics of your daughter's individual medical history with Crohn's, I would have to advise Remicade.  My doctors have always advised me that surgery should be a last resort for Crohn's treatment, as the scar tissue that builds up post-surgery is often the site of future problems.  I was diagnosed with Crohn's in 1999 and began Remicade in 2001.  To say I was a reluctant patient to try Remicade would be an understatement, but I had tried all of my other medication options, and it was either Remicade or surgery.  I opted for Remicade.  Remicade has changed my life.  It's not perfect, and I've had to have my infusions moved closer together and also now take an immunosuppresor to make the Remicade more effective, but it has truly been the best treatment option I've had since diagnosed with Crohn's.
 
Your daughter is in good hands with a concerned mom like you.  My biggest piece of advice is to ask a lot of questions, get as much information as possible, and don't ever hesitate to get a second (or even a third) opinion.  Be active and involved in your daughter's health care, and if you are not certain about the direction her health care is going in, say so.  It took me a long time to realize that I was ultimately in charge of my health care decisions, and it was not disrespectful or rude for me to question or even disagree with my doctor.   
 
Best of luck to you.

chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 2/3/2008 7:13 PM (GMT -7)   
Unless it was an emergency situation, I would never ask to have surgery unless I had exhausted all my med options. I have been on remicade for 3 years, and it has given me my life back.

belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 2/3/2008 8:58 PM (GMT -7)   
If your GI is recommending Remicade he must feel that there are medical management options. Here are some things you might want to know. Does he think that your daughter's pain is caused by an inflammatory stricture rather than a fibrotic stricture (made from scar tissue)? If it is an inflammatory stricture, why hasn't the prednisone given her relief? If she opts for Remicade and it doesn't help, how will that affect her prognosis if a surgical intervention is eventually deemed necessary? Will he recommend that she stay on remicade as a maintenance drug after surgery? If she is on Remicade and has to have surgery will she have to come off remicade to have surgery? After coming off Remicade. Can she go back on it again or is there a risk that she will develop antibodies that will render future treatment with Remicade less effective?

These are all things to consider when trying to decide the timing for beginning use of immuno-modulators. Each of our cases is different. I opted not to take Remicade in 2005 when I had to choose between it or surgery. In my case it turned out to be the right decision because when they operated my bowel was found to be almost completely occluded from a fibrotic stricture as well as having active crohn's above the stricture. The remicade would have eased the symptoms due to the active disease, but it would have done nothing to open up my stricture because it was made of scar tissue. So I still have Remicade in the arsenal of medicines available when I start getting sick again.

But I have always tried to delay surgery as long as possible because I don't want to run out of bowel before I run out of life.
Belleenstein:

30+ years living with Crohn's.


MaryS
Veteran Member


Date Joined Jan 2003
Total Posts : 1668
   Posted 2/4/2008 10:55 AM (GMT -7)   
Mom,

Your Daughter seems to be in some dire straits so really hard to say which would be the way to go. I sort of have to agree to possibly try meds first before surgery but every case is so different.

My Daughter was diagnosed at age 17 and is just one month shy of 26 right now. She has gotten good relief for almost 5 years with Remicade but was not at the same place in disease as your dear Daughter is now.

Even if a resection is the chosen route, Remicade may still enter the picture after that.

Sending good thoughts for better health for your Daughter whichever course of action is taken.
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