surgery - why don't more UC patients opt for it?

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VA Spouse
New Member


Date Joined Apr 2008
Total Posts : 2
   Posted 4/9/2008 11:48 AM (GMT -6)   
Hi - new to posting a question although I've been reading your forum for months - which is a wonderful help for people.  My hubbie was diagnosed in '93, in remission on and off over the years with Asacol and Prednisone for the flares.  The last 2 years have been hard on him, can't get off the pred & can't get into remission.  His doctor started him on 6MP about 5 weeks ago, with goal of getting him off pred.  He has blood tests every other week, so far tests are good for the 6MP.  No real success from the 6MP yet, doc said it'd be 2-3 months for effects to show.  From all I read about people on remacaid, 6MP, asacol, pred, Pentasa, etc. - it seems that UC patients go from one drug to another, trying to find something that will get them into remission and a 'normal' life.  We visited a gastro surgeon when the 6MP drug was started and she said to give it a try before thinking of surgery.  I wonder why more UC patients don't opt for the surgery to get off the drugs.  I read the brochures the surgeon gave us so I know what it entails.  I want to help hubby as much as I can and I know he's miserable with his current health.  His UC seems to be at the center of our lives and it's very frustrating.
Thanks for listening.
Loving and Supportive VA Spouse

Red_34
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Date Joined Apr 2004
Total Posts : 23551
   Posted 4/9/2008 12:02 PM (GMT -6)   

Hi and welcome :)  We having an existing thread that you may be interested in reading:

http://www.healingwell.com/community/default.aspx?f=38&m=1091182

I'm sorry that your husband is going thru so much.  Uc is not an easy disease for sure.  But I'm glad you found us and if you should have further questions, don't hesitate to ask.


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~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Allergies-Singulair
~Secondary Reynauds Syndrome-'04-Norvasc~Fibromyalgia-'06~Sacroiliitis-epidural injections
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suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 4/9/2008 12:31 PM (GMT -6)   
I think you have to have UC in order to answer that question. Most of us, myself included, do not or did not want surgery. It really comes down to a very difficult decision that each patient has to make in the best interest of their health. It's also the hardest decision many of us will ever have to make. Having had surgery I can tell you that I wished I wouldn't have waited so long but on the other hand I had to be fully convinced that I would never again reach remission before opting for surgery. There are no hard fast rules for this nor is it all in black and white.

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


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 4/9/2008 12:57 PM (GMT -6)   
well for me, up until Sept 07, I was fine w/meds. I may be fine w/maintenance meds again, who know (still on pred).

I will exhaust all my options before considering surgery. Surgery has it's own problems and recovery issues. Nothing in my life ever goes best case scenario.

To me, I would have to be flaring in a bad way for a long time to consider surgery. But I know it's there.
Beth, 32 ~ Major Flare Sept/Oct 07 ~ in remission
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 20mg 1xday (taper 5mg a week from 60 = ), Simvastatin 20mg 1xday, Diovan 160mg 2xday. Enalpril 10mg 1xday, Fursomide 20mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your protiens!
Pre-Diabetic from Prednisone use - Low carb/sugar diet & exercise.


ucRick
Regular Member


Date Joined Jun 2007
Total Posts : 75
   Posted 4/9/2008 1:26 PM (GMT -6)   
I think for me the hard thing about surgery is once you've had the surgery, there's no going back. And with the possible complications involved, surgery is a scary thing, and this is a major surgery. The medications controlled my symptoms for UC, but I was faced with surgery when they found high-grade dysplasia in one of the biopsies from my colonoscopy last year. So the surgery did not improve my quality of life, but I had the surgery so I wouldn't have cancer. And they did find cancer in one of the biopsies of my colon after it was removed, so surgery was definitely my best option.

But for me the bottom line was I would not have considered surgery as long as my symptoms were controlled by the medications. And I probably would not have the surgery if I had any hope that the medications would eventually control my symptoms.
53 yr old male, UC since 1978
800mg Asacol x 3 daily
500 mg Pentasa x 4 daily
Multivitamin
Boniva(for osteoporosis)
600mg calcium + 200 iu Vit. D x 3 daily
Advicor(for cholesterol)

Sub-total colectomy with ileo-sigmoid anastomosis 9/5/2007


Old Hat
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Date Joined Feb 2007
Total Posts : 5182
   Posted 4/9/2008 6:07 PM (GMT -6)   
Who wants to have excrement coming out the front of them into a bag that has to be glued onto the skin & can therefore itch, leak, or break-- if they don't absolutely HAVE to, as UCRick writes. There was another member who wrote here a couple months back that his insurer was refusing to pay for his ostomy bags a specified time after colectomy. So there are concrete reasons why surgery does not have universal appeal. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

Jeremy "Mr. Snuts"
Regular Member


Date Joined Oct 2004
Total Posts : 162
   Posted 4/9/2008 7:13 PM (GMT -6)   
The J-pouch is an option for most people..
Diagnosed with Severe Ulcerative Colitis 1/04 -(18 at the time)
11/04 Total Colectomy
2/05 Ostomy Takedown
1/06 DVT In leg
5/06 Pulmonary Embolii
4/07 Another DVT In leg
Current Medications -
Vicodin 800mg when needed(yumyum)
Coumadin

http://www.myspace.com/mrsnuts/
http://www.livejournal.com/users/mistersnuts/


VA Spouse
New Member


Date Joined Apr 2008
Total Posts : 2
   Posted 4/10/2008 7:57 AM (GMT -6)   

Thank you all for your responses.  Trying to understand what my hubby is going through is difficult and he's very brave considering.  You all are a great strength for each other and for us significant others who wish we could do more to alleviate the pain and suffering.

VA Spouse


nene205
Regular Member


Date Joined Jun 2007
Total Posts : 303
   Posted 4/10/2008 8:58 AM (GMT -6)   
Hey all and glad to hear you are okay, UC Rick!
Surgery is definitely hard to face. I suffered way too long with ulcerative colitis. I started out with proctitis and “progressed” to full blown ulcerative colitis. This progression took about twenty years of suffering intermingled with periods of remission. I was in denial about what my doctors were telling me concerning this disease. I would rather taken massive amounts of prednisone and asacol than even think about surgery. I took prednisone practically all of my adult life. It didn’t matter that I would puff up like a giant marshmallow and bruise at the slightest bump. It didn’t matter that 6mp caused my liver enzymes to go crazy and I was too tired to take a step. I didn’t want to hear any talk about surgery. I thought I could handle it. When I think back, I don’t know how I did handle it because I had a husband, three small daughters, and I worked full time in a very stressful profession. It finally took a diagnose of dysplasia in my colon to make me realize that surgery was the only answer. Having witnessed both my parents dying of cancer in their early fifties, I knew my denial had come to an end. I had surgery this past summer. However, because I waited too long, I was not a candidate for J-pouch surgery. My life has changed for sure, but it isn’t as bad as I thought it would be. And for once in a long, long while, I am not taking any harsh medicines that make me look and feel so miserable.

brian T1
New Member


Date Joined Mar 2008
Total Posts : 17
   Posted 4/10/2008 10:20 AM (GMT -6)   
I'd like to very much disagree with the comment of "Who wants to have excrement coming out the front of them into a bag that has to be glued onto the skin & can therefore itch, leak, or break". That is a really poor choice of words and description about having a bag for whatever reason. My father and uncle both have bags for non UC reasons. A bag gives them a complete life.

The use of a bag has given so many people their life back. I feel really sad and upset that people describe it in this way.

Some of us will need a bag but I would urge others to not view the procedure in the above fashion.
Dx mild pancolitis 2006
Mesalamine - Oral & Rectal
Vitamins & Supplements
 


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 4/10/2008 10:37 AM (GMT -6)   
I agree! I'm surprised at your choice of words Old Hat- coming from one who's had UC for so long, I would think you'd have done enough research into surgery to know that wearing an ostomy bag is not generally as horrific as you make it sound. Or so I've been told, while doing my own research.



diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Culturelle
surgery scheduled 5/7/08- perm ileo
 
 
 

Post Edited (Eva Lou) : 4/10/2008 10:50:37 AM (GMT-6)


damo123
Veteran Member


Date Joined Jul 2007
Total Posts : 714
   Posted 4/10/2008 10:44 AM (GMT -6)   
Brian / Eva,

I too find this an awful comment. I felt sick after reading it. HW is a place where we support our own and each others illnesses.

D
Asacol and Iron as Needed. <I've fallen back into unhealthy ways and really enjoying it, burb!>
 
"Whatever you do in life don't berate yourself too much nor contragulate yourself too much. Your choices are half chance. So are everybody elses'"
 
 
 
 
 
 
 


78SilvAnniv
Regular Member


Date Joined Apr 2008
Total Posts : 289
   Posted 4/10/2008 11:56 AM (GMT -6)   

I am new here, and while I found the particular comment about the ostomy bags disheartening, it also was only an opinion.  And, while we are supporting each other through our illnesses, sometimes it is good to let a harsh truth shine through to dispell any false hopes and ideals we may be misleading ourselves with.  I think that for some whose symptoms are debilitating, the bags can give untold amounts of freedom.  If others do not feel that way, or feel their benefit was not as great, it is still only their opinion of their personal experience.  It is everyone's cummulative experience we need to read through, face our own problems squarely and decide what is best for US based on the information we are able to gather for ourselves.  Sometimes that information has bad with the good and we will have to weigh the benefits against the risks for each of our personal situations.

Silver


I have the ability of single-minded determination and accurate project focu....Hey, look, a cat!
 
UC is pretty darn crappy, but if you can't laugh at yourself, you'll cry. 
I'd much rather laugh.


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 4/10/2008 12:04 PM (GMT -6)   
I would rather have that excrement in a nice little bag than loose in my pants.

Just another reminder to reread your post for tone before hitting submit.
Pan-colitis and GERD diagnosed May 2003
Osteopenia diagnosed Feb 2006
Status:  Flaring :(
 
40mg pred, Asacol 12 per day,  Azathioprine 75mg, Cortifoam, Aciphex, Forvia, and Pro-Bio, Calcium, Vitamin D
 
Co-Mod for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


brian T1
New Member


Date Joined Mar 2008
Total Posts : 17
   Posted 4/10/2008 12:20 PM (GMT -6)   
Thank you for your support on this comment. Whilst I don't mean to inflame opinion on this matter the best person to judge whether a bag is as Old Hat puts it is not me, not Old Hat but the people who have such bags. Therefore I've posted my own comment on the matter on their forum. You can check out their reaction to this discussion there, which is quite different from the comment originally posted.
Dx mild pancolitis 2006
Mesalamine - Oral & Rectal
Vitamins & Supplements
 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 4/10/2008 8:19 PM (GMT -6)   
well being one of the people with excrement coming out of my side i can tell you that i would NEVER go back to using the batroom the old fashioned way, this is much easier.
But i was really sick before i decided and i DID want surgery. I went in asking for surgery, and i actually told my dr, either you take it out, or i will! when i realzied i was actually hoping to get toxic mega colon from taking too much immodium i realized i must really want surgery alot more than i thought!
as for why i waited so long to do it, i really dont' know. I do remember thinking it would be super gross to take my poo in the kitchen, and then my MOm was like, well do you leave it out in the living room now?(this was before surgery) and i realized that was kind of silly, lol.
other than that, i don't know what my reasons were.
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