Posted 12/6/2007 7:55 AM (GMT -7)
I don't think you and your GI can sort this out. It took a consultation with a CR surgeon for me to get my hands around the idea and to get a good understanding of where I stood. Even after a surgical consultation you don't have to make a decision but at least you will be armed with more information.

Age doesn't have much do with success. There are j-pouchers who had their surgery in their late 60s and early 70's. I was in my early 40's when I had my surgery and quite a few are in the 50s. My GI also gave me conflicting information. He told me that I would have diarrhea for the rest of my life if I opted for surgery. Nothing could be further from the truth. I think that many GIs don't have j-pouch patients and therefore don't know what life is like living with a j-pouch. It certainly is true for my GI, I had surgery 7 years ago and have not seen him since!

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
 

Posted 12/7/2007 1:31 AM (GMT -7)
Brookview said...

I'm trying to decide on whether or not to have Jpouch surgery and I am having an extremely difficult time trying to decide whether or not I should have Jpouch surgery.

 

So my question to all, and hopefully you can assist...Where can I find more information to help me make my decision?

 

The other people on here gave great advise on the websites http://www.j-pouch.org and the ostomies forum here on this site.   I am in the same boat as you...trying to decide whether or not to have the surgery.   I have been advised by several docs now to have it.    My GI doc had never really brought it up to me in the past, at least until I was hospitalized last month.  Apparently the flex sig I had in the hospital showed that my disease has progressed,  and my usual treatment with steroids was not working.  His method of approaching the subject of surgery was to tell me that he had patients that said they wish they had the surgery done earlier in life, and some patients that said they wish they held onto their colon longer...and then he went on to say that the decision has to be totally up to me.  So,  he then referred me to a general surgeon to talk to him.  I saw him yesterday.   He recommended surgery to me for several reasons:  1.  my age.  He said I"m "young" (woo hoo) and with every year I have UC ,  my cancer risk goes up.  2. my diabetes.  Steroids and the inflammation raises my blood sugar.  3. My options for med therapy is limited.  I have already tried so many UC meds, and the fact that they haven't been controlling the flares or  not tolerated well, that surgery would be the next step. 4.  the biopsy results from my flex sig in the hospital.    It was showing possible dysplasia. and finally, 5.  The fact that I"m proving to be prednisone-dependant.   The steroids are very bad on your whole body,  so it would benefit me to not have to take the darn stuff anymore.  So, now he's referring me to a colo-rectal surgeon that does the surgery laparscopically.   I don't know how much of that would apply to you,  but I think getting a second or even third opinion would benefit you as well.  I am seriously considering getting it done, but still have so much more research to do, and hearing from those that have had it done. I've been visiting the forums listed above as well... I wish you lots of luck on finding the decision thats right for you.  :-)

~Christie 
40 yo RN, happily married, with 2 beautiful daughters, Tianna(14 yo) and Alyssa(10 yo).
Diagnosed with L sided Ulcerative Colitis in Jan '04 and Diabetes type 2 in June '05.
Medications
Remicade infusions ~ Nov. 2007,  6-MP 100mg daily, Pentasa 500mg twice a day, prednisone taper 20mg daily, Nexium 40mg twice a day, Lantus insulin 45 units daily, Novolog 10 units with sliding scale at meals, Amaryl 2mg daily, multi-vitamin daily, and Calcium daily. 
                 
                                                     
 
 
 
         

Posted 12/16/2007 3:42 PM (GMT -7)
I've had UC since Aug. 2003 (I was 21 at the time, now almost 26) and am also trying to decide whether to hvae surgery. I've been on steroids since February '07 without being able to get off. Thing is I'm still having symptoms even with the Pred. I think it's keeping me from being severely ill but not clearing up the inflammation either. I'm on 15 mg right now - not too high of a dose but I don't want to be on it for much longer and am paranoid to taper any lower. I am leaning more and more toward having surgery because I bleed pretty often and my energy level is always low. I've read lots of success stories on here. Anyone have any suggestions? Other meds that I should look into? I've tried Remicade too and it didn't seem to do too much. My doc doesn't seem supportive of Humira for UC. Thanks for any help!
-Pat
Posted 12/17/2007 12:47 AM (GMT -7)
something doesn't add up here... you have what seems to be a tolerable case of UC. You also have a co-morbidity (RA) that is treated by the drug favored by many UC'ers as a savior (Remicade). Definitely take the Remi and see if both of your conditions improve.

You can only have your colon removed once... if you flare every 3 1/3 years, that means there are approximately 2 new UC drugs available EVERY TIME you flare (taking the average over the past 8 years or so). Next up are Humira. Cimzia, alicaforsen, pred-col, etc.

There are certainly people here who are FED UP with UC and never look back from their decision to have surgery. You don't seem like one of them (you are basically stating that your UC isn't all that bad, despite the hospitalizations). I think the defining mark is if you feel bad even when you're in REMISSION (or have cancer looming), which does not seem to apply to you.

Finally, let's say you don't have UC but actually Crohn's or Chron's colitis. Now you have all the 'fun' of a J-pouch, and your illness isn't gone. For people who elect surgery, that risk is worth it. You don't seem able to justify it, YET.
Dx:

Left-sided UC, Jun 2005. Flex-sig only... clear for first 20cms, then inflamed through next 30cms.

Therapies:

Pharmaceutical: Pentasa 3G/day, hydrocort 1x every 7 days
Probiotics: Acidophilus Pearls, Primadophilus Bifidus
Naturals: Caprylic Acid, Methylated B-12, Vit ACDE, Zinc (w/copper), Selenium, Turmeric, Bromelain, Luteolin
Killer Foods: Soda, Fried Food (especially french fries!), Beer, Red Wine, Pepperoncinis

Posted 12/17/2007 7:09 AM (GMT -7)
I agree with AKB, that's what I was gonna say!  If I was in your shoes, I would not get surgery.  I hope the Remicade helps with your arthritis.
Adrienne,27
Diagnosed with Left-sided Ulcerative Colitis 1995 at 15
Tried: Prednisone, Rowasa & Hydrocortisone Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcourt, Colazol, Proctocort, Anamantle, etc...
Diagnosed with Ulcerative Proctitis with rectal fistula in 2004, put on Remicade
2007:Increased Remicade dosage-660mg every 6 weeks,diagnosed with Psoriatic Arthritis & Fibromyalgia
Current meds: Remicade 660mgs every 6 wks ( I may be developing antibodies?), Lomotil, Darvocet, Clorazepate, new meds: Prograf, Cymbalta, Lyrica

Posted 12/17/2007 4:04 PM (GMT -7)
I remember months before my surgery how I vowed I'd never do it because of how scary the thought was. 2 months later I was told I had no choice really..I got all the information I possibly could on J-pouch and the total colectomy and it still wasn't enough to make me feel like I was making the right decision. After my surgeries and 2 years later - I'm able to take a helicopter trip through the grand canyon, get out and toast with my friends and drink champagne and eat cheese and just take it all in without having to worry about finding a bathroom. I don't think anybody back then could of talked me into surgery being a good idea..i'm just glad I went through with it.

Just remember when you're reading the j-pouch forums with everyone complaining about how horrible it is, and all the things that could go wrong. The only reason you don't find an equal amount of people praising it is because they are out living their lives.
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/

Posted 12/17/2007 4:37 PM (GMT -7)
I suspect the doctor is recommending colectomy because of the statistics that show the risk of colon cancer rises sharply after ten years of pancolitis. Some doctors will tell us that the risk at that point is too high to take. Of course, it's always our decision in the end.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Intolerant to Asacol and rectal mesalamine preparations.
On Prednisone then Entocort 2001-2006 with only short periods off. 
Current meds are Colazal, Azathioprine and Remicade.
In remission since April, 2006. Remicade has been my wonder drug.
 

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