need input: going to meet with surgeon tomorrow to discuss surgical options vs remicade

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mirowpl
Regular Member


Date Joined Nov 2009
Total Posts : 380
   Posted 11/15/2009 2:59 PM (GMT -7)   
Ok, so i have been lucky.  15 yrs of crohn's and just had first major problem.  blockage and 6 days in hospital.  about 18 months ago colonoscopy showed dramatic inflamation and shrinkage of intestines at the small/large point.  dr said we needed dramtic change from asacol/pentasa/iron pills (only symptom has been anemia from bleeding)  well, put me on cimzia and that did not stop the blockage.  Dr wants to give remicade a try before we look at surgery.  i am a very athletic person.  coach little league sports, run pit crew for marching band, play full court basketball 3 days a week.  crohn's did not stop that until now.  the meds are killing me-nausa, dizzy, dont feel like eating-have lost 15 + lbs  and there is no sure way that they will.  I want to understand the surgery and complications. 
 
 so for those of you who have at it, what do you wish yuo had asked about?  what should i know?  i am trying to make an well thought out decision.  the remicade side effects scare me.  I travel for work and this will effect that.  i know surgery does not cure.  any thoughts are greatly appreciated.

mirowpl
Regular Member


Date Joined Nov 2009
Total Posts : 380
   Posted 11/15/2009 3:28 PM (GMT -7)   
forgot to add. I take 5 different medicines for high blood pressure. have severe gout so take daily pills for that as well. for cronh's right now, stopped the cimzia and i am on flagy, prednisone and tamaflu (have son and wife with the flu). cimzia did not affect blood pressure pills but prednisone is.

Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 11/15/2009 4:23 PM (GMT -7)   
I would be curious as to what the inflammation is? Could it be scar tissue, in which case your only real option for relief is surgery. I'm curious if the Cimzia, or any of the other medications, has done anything to improve your condition.

I had 3 resections. My middle one was from scar tissue. I spent several weeks in the hospital on TPN trying to avoid surgery and trying to see if the inflammation could be treated with high doses of IV steroids, but after awhile it was clear that it was scar tissue.

Surgery can give you quality of life back, but there is a cost. You can't always eat everything you want. You will have to deal with some increase in bathroom trips and each time you have surgery there is less intestine the next time around, eventually you could end up with short bowel syndrome. Just some of the reasons doctors like to avoid surgery.

I have had Remicade, but not on the dosing schedule that is currently recommended, so I can't really speak to that option. I can say that after my last resection, I have had a long stretch of time with out much trouble. I do have my periods of time when I don't feel my best. But overall, my disease finally seems to be settled. It did take a long time and 3 resections, but I attribute that to the fact that I was undiagnosed for 10 years and things were way out of control for years.

I will say that for me, surgery gave me back the option of being a fully functioning mother. I had young children and was finally able to participate in their lives and do what I wanted to do again. It isn't the right option for everyone, and you need to make sure that you are doing what is right for you. If your doctor isn't listening to everything that you are saying, it might be time to consult not just a surgeon, but also a second opinion GI.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


mirowpl
Regular Member


Date Joined Nov 2009
Total Posts : 380
   Posted 11/15/2009 7:36 PM (GMT -7)   
thanks Zanne. Tomorrow is day with the surgeon. I have been with the same gi for over 10 yrs and have faith in him. but he like my general practicisoner both say, advoid survery at all costs. I do not think that way given wht i try and do with my like. I have never had the "usual" crohn's symptoms so why should i think i should solve it the usual medication ways. at least that is what i am thinking. what i want to do now is have another colonoscopy and gi series to see if they can tell i have scar tissue which is causing the problems. then that should provide a clearer answer.

pillpopper
Regular Member


Date Joined Jan 2009
Total Posts : 209
   Posted 11/15/2009 8:10 PM (GMT -7)   
My Dr.'s gave me the choice of surgery and Remicade and I did both.
My quality of life was zero,horrible cramps,bleeding,ect,ect,ect.
Regret's:they could have told me about lack of B-12 being absorbed following surgery.
So far it's worked for me,with little to no side effects.(4 year timeframe)
B-12injections,Pentasa,Loperamide,Entocort,6mp,Hydrochlorothiazide,8 week
Remicade,vitamin-D,Fluconazole.More over the counter vitamin-D. Remission since surgery and 5-years, of 8-week Remicade.
.


Bammer
Regular Member


Date Joined Mar 2008
Total Posts : 381
   Posted 11/15/2009 10:58 PM (GMT -7)   

I never had the "usual" symptoms of Crohn's either. Initailly given the choice of surgery or Remicade. Many tests later and confirmed scar tissue, I had a resection.

One thing I would recommend discussing with the surgeon is the expectations of surgery. I thought I might be med free or on a lesser drug after surgery but not the case. Also in my case I knew I had a stricture in the colon but what if they find other afffected areas? You should talk about this as well.

I am doing great and happy with my decisions so far, they are not easy to make.

Good luck!


57 yr. old F dx. CD 07/07
Was on prednisone for three months but no medication for next 11 months.
Started weekly methotrexate injections 09/22/08.
Lap assisted sigmoidoscopy done May 11/2009


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 11/16/2009 7:16 AM (GMT -7)   
I think you really need to find out if your stricture is from inflammation or scar tissue. Maybe a Small Bowel Follow Thru needs to be ran to give you some answers. If it is scar tissue, as Zanne said only surgery will improve that, in fact if you did the Remicade it could cause faster healing and cause the scar tissue to increase. So I think you are best first finding out what the stricture is from inflammation or scar tissue.

I have had 2 resections and I agree they have given me my life back. Surgery does cause some changes. I don't suffer with D but more with C. But I take stool softners nightly and that keeps things soft and easy to pass. You will also notice there will be foods you no longer digest well and upset your stomach. But once you learn to adapt your diet to the changes life can be good. And if you do get surgery, be sure you always take some type of maintainence med. You don't want a repeat surgery to happen. I didn't take maintainence meds after resections #1 and ended up having a second surgery 3 years later.

Good luck and keep us posted on what the docs say.

Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 11/16/2009 10:46 AM (GMT -7)   
Might be too late, but I was in a somewhat similar spot as you 9 months ago. Here is the thread.

http://www.healingwell.com/community/default.aspx?f=17&m=1382887
33 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. Proferrin iron pills.

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


Go Saskatchewan Roughriders!


mirowpl
Regular Member


Date Joined Nov 2009
Total Posts : 380
   Posted 11/16/2009 6:35 PM (GMT -7)   
thanks Rider Fan. good insight. AFter meeting with the surgeon today, we are going to give remicade a try. surgeon saw no immediate need for surgery and thought my gi dr was beign very cautious with my treatment plan. Interestly, he told me that he looked at my files and want to know what i thought of my insides being flipped?? i said what? he said yes my intestunal tract is backwards than most. it is a condition that happend when still in the fetus. Oh well he said did not cause any problems except with surgery. He will not do lapro on people who have this condition as he never knows what else he will find. i knew my mom was right when she always called me special!!! I will update after first remicade treatment on Wednesday. wish me luck. i am scared.....

jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 11/16/2009 7:48 PM (GMT -7)   
good luck to you mirowpl. Thoughts and prayers are with you.
diagnosed 1/09 with "diverticular colitis" ?? location: sigmoid colon
localized scleroderma & IBS, low thyroid,claritin, advair, singulair, lisinopril, progesterone, colazal, fish oil, synthroid, zoloft, wellbutrin, VSL#3 probiotic, Vit. D
Blood test positive for Crohn's via prometheus ibd serology panel
 


jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 11/16/2009 7:48 PM (GMT -7)   
good luck to you mirowpl. Thoughts and prayers are with you.
diagnosed 1/09 with "diverticular colitis" ?? location: sigmoid colon
localized scleroderma & IBS, low thyroid,claritin, advair, singulair, lisinopril, progesterone, colazal, fish oil, synthroid, zoloft, wellbutrin, VSL#3 probiotic, Vit. D
Blood test positive for Crohn's via prometheus ibd serology panel
 


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 11/16/2009 7:59 PM (GMT -7)   
Good Luck Mirowpl! I hope the Remicade brings you remission!

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life


mirowpl
Regular Member


Date Joined Nov 2009
Total Posts : 380
   Posted 11/20/2009 4:15 AM (GMT -7)   
Ok, had first remicade treatment on Wednesday.  Only two small side effects during the treatment: a little nausua and a bad taste in my mouth.  other than that went fine.  both went away at the end.   today is friday and i feel no different than before the treatment. no side effects but feel about the same. ...and no urge for cheese smilewinkgrin ......
 
We will see how this goes.  Two weeks to next treatment.  Stomach feels about the same. will update as the week goes on.
 
thanks!
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