2nd thoughts on surgery

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Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 550
   Posted 6/10/2008 10:04 PM (GMT -6)   
My daughter is scheduled for a step 1 of 3 for a j-pouch on June 27. Next Monday (6/16) we are seeing another surgeon for a 2nd opinion (sort of hoping he does laproscopic since the 1st doctor doesn't). My daughter has been feeling pretty good. I guess you could say she is almost in remission. Of course she is still lowering her prednisone (she is down to 15 mg a day) so it could be (and probably is) false hope.
 
Anyway, I am starting to rethink the whole surgery routine. I know it is probably for the best. I know that she will probably (definitely?) flare again (and probably during the school year). I know she has almost exhausted all traditional meds. But she is still my baby, it is still a big surgery, it is a long recovery, and it is permanent.
 
How did you balance both sides when you made the decision to have surgery?
 
--Mom of bratcat (17 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Current meds:
Asacol - 4 pills/3Xday, 2 tabs 6-mp/1.5 tabs 6-mp every other day, 25 mg prednisone, Remicade
 
11/14/06 - started prednisone; 1/28/07 - finished prednisone!
3/3/07 - began to taper off hydrocortisone sloowwly! Summer 2007 - slowly began tapering Rowasa. 9/07 -- flaring? Nightly Rowasa. 9/21/07 -- added hydrocortisone enemas. 9/30/07--added prednisone. 10/31--started 6-mp, stopped the enemas. Started lowering prednisone. 3/08-another flare!


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5692
   Posted 6/11/2008 7:18 AM (GMT -6)   
This is a tough call and MOST of us who elect to have this surgery for UC have to make that same decision. We feel kind of well when our flare tapers but we aren't 100% well. What does your daughter want? If you believe your daughter can get off prednisone then by all means postpone the surgery. If she can't then you are just rolling the dice with her long term health with that drug. I am not sure how long she has been on it but over 4 months is considered long term. Attached is a link to my UC/jpouch story along with a couple other articles on UC. This story appeared in the NY Times last week.

Sue



http://health.nytimes.com/ref/health/healthguide/esn-ulcerativecolitis-ess.html?ref=health
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


LittleE
Regular Member


Date Joined Mar 2008
Total Posts : 137
   Posted 6/11/2008 7:34 PM (GMT -6)   

Bennie,

I am fairly young (27), female, and just finally decided to have this surgery 4 weeks ago due to Crohn’s disease.  I can totally relate to the position you and your daughter are in by having to make this decision....my surgeons were telling me back when I was only 17 that they wanted me to have this surgery (I was Really in a bad flare then).

What happened for me what that at age 17, I had tried almost all of the meds and they didn’t work.  However, Remicade (which was fairly new then) had come out, and I told my surgeon that I wanted to try this last medication to see if it worked (they thought I should just have surgery) before I would consider an ileostomy.

Well, Remicade was a total miracle for me!  I was literally BACK TO NORMAL without any Crohn’s symptoms!  And it continued to work for me for nearly 10 years (those were great years that I would not trade for the world)!

…but then last year, the Remicade began to not work as well (I would be in remission for about 5 weeks, but flare for the next 3 weeks until I got my next dose of Remicade, then be in remission again, etc.).  Also, my colon had so much scar tissue from past inflammation that I was not able to have a colonoscopy performed, not even with the pediatric scope.  This meant I could not be screened for colon cancer.  I began to think more seriously about surgery.

Last March, my mother (who also has Crohn’s) was diagnosed with colon cancer.  She had it removed and is doing well, but for me, that was the straw that broke the camel’s back so to say.  I realized that colon cancer could be forming in me (my chances were 20 times higher now that my mom had it), and the doctor’s could not even check to see.  So, I tried to look at my options as logically as possible.  Remicade was not working as well, but I still was not HORRIBLE, you know?  Not as miserable as I thought I SHOULD be to choose such a drastic measure.  It sounds like this is how you feel also. 

I obviously would never presume to tell you what is best for your daughter, because I could never know.  I chose to exhaust all medications before surgery, and am VERY happy that I did so.  I was NEVER on prednisone in the 10 years that I took Remicade—the Remicade itself was good enough to keep me in remission.  I would NEVER trade those great years I got from being on Remicade to having surgery.

Since your daughter is not sick all the time, I realize that that makes the decision that much harder.  I had MANY reasons to choose surgery, but it was still very hard for me to pick having an ileostomy because I was still functioning pretty “normal” at the time…

What does your daughter think about everything?  She is so young; I can’t imagine how hard it must be to see her feeling sick. L   What meds has she tried?  Good luck…keep us posted about how you both are doing.


Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 550
   Posted 6/11/2008 8:23 PM (GMT -6)   

Thanks for your replies.

Bratcat has tried (and is still on) asacol. She used rowasa enemas, hydrocortisone enemas, and prednisone for her first flare. It took several months but she did get into remission.  She started to lower her rowasa and got to every 3rd night when she started flaring again. Upped the rowasa, added back hydrocortisone enemas. Didn't help. Went back on prednisone (highest each time was 60 mg). The GI started her on 6-mp. I know it generally takes weeks to months for 6-mp to kick in but she started on the way to remission almost immediately.  We all figure it was the prednisone working. Finally felt like she was in remission and BAM! started flaring (6 months from when she started flaring with her 2nd flare so her 2nd remission really wasn't that long). Started the enemas again but this time no change using them. Started back on prednisone...again. From 40 to 60 mg. Added Remicade. Felt good after the first infusion. Started lowering her prednisone. Had her 2nd infusion. Felt good but not like it was a wonder drug. Had her 3rd infusion. Still didn't think it was the "remission" drug. And so, here we are, deciding on surgery. Her last 2 colonoscopies have shown dyspasia but the pathologists feels that it probably is due to the inflammation (haven't been able to get a colonoscopy when she is in remission).

We kind of feel that she is at the end of her meds. It looks like prednisone is what is really getting her into remission. And she missed 9 weeks of school with the first flare, 9 weeks with the 2nd flare, and 7 weeks with the 3rd flare. Logically that can't be the way to live. But surgery seems (and is) so drastic. Aaaccckkk!! confused


--Mom of bratcat (17 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Current meds:
Asacol - 4 pills/3Xday, 20 mg prednisone, Remicade
 
11/14/06 - started prednisone; 1/28/07 - finished prednisone!
3/3/07 - began to taper off hydrocortisone sloowwly! Summer 2007 - slowly began tapering Rowasa. 9/07 -- flaring? Nightly Rowasa. 9/21/07 -- added hydrocortisone enemas. 9/30/07--added prednisone. 10/31--started 6-mp, stopped the enemas. Started lowering prednisone. 3/08-another flare!


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 6/11/2008 9:13 PM (GMT -6)   
i think that my decision to have surgery was harder for my mom than it was for me, and i was 29 (gasp, so old!) when i had my surgery.
I know that it is hard when she is feelign good now, but i think what you have to remember is that the feeling good may not last, and from the past history, it doesn't look like it will last. She is young, and it is a big deal to have surgery at any age, and even more so at a young age. But do you think that she wants to waste huge chunks of her life flaring, and trying drugs, and being in remission, but alwasy waiting for the other shoe to drop? i know that is how i felt everytime something worked, or i started feeling better, i was always like, when is it going to end???
Even if i hadn't had my surgery, i think i would still say that surgery seems like the best option for your daughter.
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