Surgery Decision Question

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broadwind
Regular Member


Date Joined Mar 2009
Total Posts : 24
   Posted 3/21/2009 6:08 AM (GMT -6)   
Well Im back in hospital again for a really bad unrelenting 2 month flareup, and this time i seem to be refactory to the usual dose of steriods (even delivered intravenously). Mesalazine enemas and tablets are not helping to get my UC under control or keep it in remission, and trying to start on Azothirprine again is greatly aggravating my bleeding.

Therefore next week my doctor wants to try either Cyclosporin or Remicade to see if that can get a remission induced. My doctor wants to try "every last medicine before surgery, because surgery will change your life forever"

I dont understand why surgery is such a big deal. UC changes your life forever, i have accepted that and i have figured out my plan forward. My UC appears to be refactory to most of the medicines now so why bother trying to deal with more medicines. Seems like surgery is the point where i can begin my life again, learning to live with the consequences. Im thinking if it go for the Cyclosporin or Remicade its just going to delay the inevitable bowel removal operation by a 6-12 months while ruining my immune system and making any surgery much more risk prone. As well as likely giving me hidden side effects like lymphoma, genetic defects, or bone problems etc which might turn up years later, and the risk of colon cancer is not reduced.

Im very understanding of the risks and rewards of surgery but im struggling to understand why people would try the more toxic drugs like Cyclosporin or Remicade if the doctors already know its not a cure but rather delay mechanism. Its it just to avoid surgery at all costs, or is it it to keep the intestine intact so perhaps in the future there will be a cure and everyone can get back to a normal anatomy and functioning?

Im hoping to hear reasonings from people who decided for surgery (and either had a good or bad outcome) and those that wanted to persist with years of medicines without resorting to surgery

Thanks
Male, 33yrs, Australia

Bowel problems started 04/03
Pan-colitis UC Diagnosed 08/07
Hospitalized Aug 05, Aug 07, Mar 09

Meds used: 3g Mesalazine (maintenance),
40mg Prenisone (during flare-ups),
300mg daily IV Hydrocosone (while currently in hospital)
2g Entocort enema (during flare-up),
1g Mesalazine Enema (medium term maintenance)


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 3/21/2009 7:29 AM (GMT -6)   

I had surgery 8 years ago for refractive UC.  Back then the last drug choice was 6MP and it failed me.  Today I am very happy that I made the surgical decision and that the bigger drugs (biologics) weren't available when I was ill.  I would have taken ANY drug to prevent surgery but since I have been 100% healthy and drug-free post surgery I no longer feel that way.  Surgery was the right decision for me and I have worked hard at making up for the 2.5 years I lost of my life due to chronic disease.

Sue


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


AnnaG
Regular Member


Date Joined Apr 2008
Total Posts : 191
   Posted 3/21/2009 9:29 AM (GMT -6)   
I opted for cyclosporin,last time I was in hospital and it did Knock me into remission,for a few months but it also made me feel very ill and weak,I'm now on Azathriopine but have not acheived full remission,I also have alot of pseudo polyps so my GI is really pressing me to talk surgery,also when I was in hospital having the dose of cyclosporin the doctor said most people having cyclosporin are back within a year for surgery I've been a year and four months now and I feel it is getting worse again.For me the main reasons why I did'nt have surgery then and am still trying to hold off now, is mainly fear I guess, and I find the idea of the bag horrible,and the fact the j pouch may not be possible or I will have complications with that,also I have a young baby other kids we are living fairly rough at the moment I don't have ideal conditions in which to recover,but then again like you say I'm not having much of a life at the momment everyday is a struggle I have pain,and am constantly washed out and exhausted,I keep hoping against hope that it will calm down or will hit on some alternative treatment that will work.I think if your brave enough go ahead and say you want elective surgery plenty of people seem to do that and most that I've read on here seem to feel it was the right decision.also I think I think most GI like to try every possiblity before surgery,as they want to treat medically,you could always ask him to refer you to a surgeon for a chat,I've got an appiontment with the surgeon at the end of the month,even though I think I'll never been brave enough to opt for elective surgery,if it becomes desparate again I don't think I could handle doing the whole steriods cyclosporin thing again.
Take care Anna

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 3/21/2009 9:49 AM (GMT -6)   
I'm still new to UC, but I've been doing as much reading as I can about treatment options. The January 2009 issue of Inflammatory Bowel Disease has three good articles, and they're all on-line for free. They are:
1. Treatment of choice for acute severe steroid-refractory ulcerative colitis is cyclosporine (p 141-142)
2. Treatment of choice for acute severe steroid-refractory ulcerative colitis is Remicade (p 143-145)
3. Treatment of choice for acute severe steroid-refractory ulcerative colitis is colectomy (p 146-149)

They are all easy-to-read and I hope that they help you in making your decision.

Here's the link:
http://www3.interscience.wiley.com/journal/121549458/issue

All of the other articles in that issue are free, too!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, 40mg of Prednisone (quick taper), Culturelle probiotic, and Zoloft (25 mg).


Cher
Regular Member


Date Joined Jan 2003
Total Posts : 119
   Posted 3/21/2009 9:58 AM (GMT -6)   
I had the jpouch surgery recently and so far have no regrets; yes, the surgery did change my life as I am no longer taking prednisone, asacol, mercaptopurine, and remicade. I tried everything prior to deciding to getting the surgery, for several years, but enough was enough. I'm returning to work full time on Monday and returning to the gym as well, two things I miss the most right now.

Cher

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/21/2009 11:21 AM (GMT -6)   
Broady-your reasoning against remicade was exactly the way i thought of it! but my dr talked me into remicade, and stupid me agreed! and i ended up wasting 8 months i could have been living, waiting on remicade to fail and then dealing with it when it did fail!
I finallly had surgery april 17 2007 and now i have NO idea why i didnt do it the first minute i found out i was sick almost 10 years ago, instead of wasting 8 years hoping something would work.
Yes it was a life changing decision, and the second hardest one i ever made, BUT it was the best decision and it def changed my life for the better!
I do remember though that as the time for surgery approached i got it into my head that i was going to wake up from surgery and see Brian Williams (i just like him,l ol) on tv saying "we interrupt this show to tell you that a cure for UC has been found! And it's as simple as taking two asprin"
But logically i knew that was the stupidest thing ever, lol. But i did worry about that.
Anyway, bottom line, i had surgery because i was tired of waiting on the other shoe to fall with all these diff meds i was tired of feeling horrible, of my child missing out on his mommy cause i was too tired.
And now life is great!
Anna-I promise you that having a bag is not bad at all, its really rather handy at most times, lol.

Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
   Posted 3/21/2009 11:32 AM (GMT -6)   

My daughter had j-pouch surgery this past July. She only had UC for less than 2 years but had 3 very big flares. She missed alot of school. When she was first diagnosed (and we were still ignorant to UC) we never thought she would have surgery. We also said she wouldn't go on some of the bigger, more powerful drugs. Who knew at the time! Her decision to have surgery was based on the facts that 1-she was having a harder and harder time getting into remission, 2-her flares looked to be coming more often, 3-she felt like she was losing her teenage years to a disease, 4-she didn't want to live on powerful drugs for another 60+ years wondering what damage they were doing. Even though infertility can be an issue with a j-pouch, she didn't want to worry about having and raising children while having a flare.

For Bratcat (our daughter), surgery was the best decision. She is having a wonderful senior year of high school. She has been able to participate in everything a typical 17 year old should be doing. She is happy and healthy. She is looking forward to college.

Bratcat had surgery while she was in remission. Better for the body but at the same time, harder to sometimes accept in the mind because you are healthy. I think the best thing to do is to consult with a surgeon. Get the information from them. Ask questions. Get details. Weigh your options. You don't have to necessarily make any decisions but you will have all the knowledge if and when you are ready to make a decision.

 


--Mom of bratcat (17 years old) and nonamejames (20 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Flared Fall 2006, Fall 2007, Spring 2008
Asacol, Rowasa, hydrocortisone enemas, prednisone, 6-mp, Remicade
7/3/08-Step 1 j-pouch surgery and no more meds!
11/10/08-Step 2 reconnect!
 
Son nonamejames was diagnosed with Crohns in Spring 2008
Asacol, Pentasa, 6-mp


Burli
Veteran Member


Date Joined May 2003
Total Posts : 1251
   Posted 3/22/2009 10:00 AM (GMT -6)   
Why did you stop taking azathioprine? You mentioned you're having problems starting it back again.

 


broadwind
Regular Member


Date Joined Mar 2009
Total Posts : 24
   Posted 3/22/2009 2:20 PM (GMT -6)   
Thanks for the replies. At the moment my doctor has upped the dosage of IV Hydrocortosone to 400ml/day and 300ml/day Metronidozole IV (incase something has bacterial infection) and trying that for another few more days then afterwards assuming no improvment he will declare i am steriod refactory and my choices are Cyclosporin or Surgery. Im going to opt for the surgery road at this point, due to research and thinking it though cannot justify temporary fixes like more medicine just to delay my enevitable surgery.

Those links sent were very good, also i found a good side at pubmed.gov searching under Ulcerative Colitis list the very latest published research updated on a daily basis.

I began on 6-MP in my Aug07 hospital stay and was on that for a few months which i think helped however i came out in a terrible rash which i told the doctor i didnt really care about since it was only noticeable on my torso however the doctor said it was a sign of liver toxicity and with blood tests took me straight off it. The rash went away in a few weeks and my UC stayed ok for about 4 months before the next flare-up. In my Aug-08 flareup the doctor said he'd try Azothiorprine as its metabolized to 6-mp rather than pure and some people have a better tolerance. I took it for a few weeks but stopped as my flare was getting under control by Entocot enemas and high-but tapering prednisone and mesalazine and i was moving between countries and couldnt have the monitoring required. I thought i could start it up around the next flare and that would be ok. Well it takes 2 months to work and increases my bleeding hugely when taking it together with a severe flare so the doctor says its pointless now and not an option.
Male, 33yrs, Australia

Bowel problems started 04/03
Pan-colitis UC Diagnosed 08/07
Hospitalized Aug 05, Aug 07, Mar 09

Main Meds used: 3g Mesalazine (maintenance),
40mg Prenisone (during flare-ups)
6-MP (stopped due to liver toxicity)
150mg Imuran, (stopped due to rash)
400ml daily IV Hydrocosone (while currently in hospital)
2g Entocort enema (during flare-up),
1g Mesalazine Enema (medium term maintenance)

Foods I avoid: Alcohol, Chocolate, Muesli, McDonalds


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/22/2009 10:24 PM (GMT -6)   
i thought of something, one of the reasons i was against surgery (this is the honest to god truth) was that i thought it would be gross to have a bag in the kitchen! because that seemed like i was takign my poo in the kitchen. and my mom was like, well is it not in you when you go to the kitchen anyway?
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