Posted 10/21/2007 8:13 AM (GMT -7)

Surgery was definitely something I never wanted to have and I fought the good fight to avoid.  However, I came to the point where I was more afraid of long term side effects of prednsione and I was done with compromising my ability to participate in life.  I wanted to live again, I wanted to travel, and I wanted to hike.

Yes, food transition is faster.  The reason is that a colon, about 6ft in length, can store up to 48 hours or more of waste.  A j-pouch, all of 9 inches, cannot store that much and that is why frequency is higher.  To empty a j-pouch is a quick and efficient as urinating.  No prolonged periods of sitting on the toilet, no cramping and no pain.

Is this a lame cure?  Not for me.  I am living a full life, not taking any medications, eating a diet high in fresh fruits and vegetables, and exercising to my heart's content.  I can't believe how much better my life is post colon.  Although not as perfect as living with a healthy colon, it sure beats living with severe 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
 

Posted 10/21/2007 9:35 AM (GMT -7)
Suebear: This may sound strange, and forgive me for asking such a personal question...but how does "going" differ when compared to a normal colon bm? I mean, I understand j-poucher's have to go more than a couple of times a day...but is there urgency? Or do you just feel "full" and you need to go like when a normal colon is ready for a bm, just more often? Thanks.
Diagnosed Fall of 2004

Meds:
6MP 1/2tab x 2 25mg ("re-challenging" 6mp)
Remicade 4 infusions
Prednisone 25mg (down to 5mg taper a week)
Citrucil 6-8 capsules a day

Posted 10/21/2007 10:09 AM (GMT -7)
Hey ks1905- 10 days in the hospital after lapro surgery? I thought it was 2-3 days in the hospital with the lapro? (of course I know "full"/ total recovery in terms of pouch function can take a year plus), and that the 7-10 days was for open surgery- I may be wrong. Anyway, this is a great thread.
Pancolitis dx'd 1986, full med-free remission 88-97
Flaring or simmering ever since
10 20 mg pred, 100 mg Imuran
Probiotics (mainly Primal Defense)
Turmeric/circumin, various vitamins/minerals,
Low-carb version of Specific Carb Diet
 
 
 

Posted 10/21/2007 10:23 AM (GMT -7)
ks :)

By no means did I mean "lame" to be an insult, I fully understand many are gratefull to have their lives back, so to speak, after having colon/rectal removal, but I'm also aware of many that still find a trade off of issues to deal with because of it as well (I've visited the "Ostomie forum here at HW) ...by "lame" I mean that it's really sad one has to have this done in order to be cured from the disease returning, I do however understand that in many circumstances it's completely necessary (even life or death)...but if it was the greatest thing then docs wouldn't use it as a last resort option either.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)

Posted 10/21/2007 2:57 PM (GMT -7)
Denise, I'm in Austin as well. I'd be curiou to know the GI Doc you use? I'd like to avoid anyone that tried to force surgery on me and/or said j-pouches don't work!
Posted 10/21/2007 3:48 PM (GMT -7)

There was some urgency right after surgery but it goes away.  The feeling I get now is similar the feeling you get with a colon.  Sometimes you don't even know you have to go, you head to the bathroom to pee and find out you need to empty the pouch too.

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 10/21/2007 8:14 PM (GMT -7)
For those who have had surgery and are happy, God bless you but please present your experience as your experience and nothing more. For those who have had surgery and are unhappy the same (these people exist but are not often seen on this forum).  Just as some meds or alternative treatments work for some and not others surgery also has mixed results, yes you no longer have UC and the cancer risk is gone but as the KS1905 's Doc said a healthy colon is better than a J pouch, so do your research.  The logic of this remark is clear, the question that arises is where the balance shifts. I dare say no one on this forum has a healthy colon (some have no colon) but the degree of disease varies dramatically, thus one reason for my beginning comment. My concern is that I see a lot of very young people both in age and or young in the length of time with UC  looking at, considering or having surgery.  My experience is perhaps of interest.  I basically had mild proctitis when first diagnosed over 20 years ago, this progressed into a bad pan colitis flare that lasted several years. I couldnt tolerate the meds, surgery was suggested by my GI.  My reaction was to change GIs my flare was brought under control, my system adjusted to the meds and though flares have been experienced since (though not as bad as the first) there have been none for the last 4 years. Today the treatment options are many times larger then were available 20 years ago and are growing.  The surgery option will always be there but you have only one colon. I have been very fortunate thus far, I take only sulfasalazine and VSL. Surgery IMO should always be the last option.
Posted 10/22/2007 7:27 AM (GMT -7)
I'm hoping this specialist has some miracle today. Hopefully he'll put me on remicade and it'll work like a dream. I'd MUCH rather have a healthy colon than not have one at all, but I just don't know. I haven't had it very long, but the timing is so bad, and I've always been drug resistant. I know I could have surgery complications that make it worse than now, so I'm not jumping into it. However, I do heal quickly (my c-section was a non-event) and right now I am fairly healthy (though underweight) and still have control over my...muscles? The main problem is, how much of my kids life do I want to miss b/c of this? How many times do I want to say we can't do something b/c mommy is sick. It's not fair to them, and I will feel horrible years from now when I missed so much with them. I have waited 10 years to take my kids to Disneyworld and my oldest will be just under 5 when we go this holiday. I've been waiting since our honeymoon to be able to take them. Right now, if I can get well enough just to get on the plane, I won't be able to even stand in line b/c I'll have to go to the bathroom. Let alone ride anything b/c it would make me have an accident. I'm already crushed that there is no chance of more kids now, let alone this whole trip thing and moving on in life. How many times do I want to say I can't go on a ride b/c I'm sick? How many times do you think I could do that without crying?
dx late April 2005 with pancolitis UC after birth of my son (second child)... meds didn't work (or rather they would work and then randomly stop)
Started SCD and vit e enemas 12/9/05...that and meds = remission 12/11/05, off meds 12/20 (were on the way out before that), stopped continuous enemas 3/23 and use them only when I feel a flare coming on. 
Beautiful perfect baby boy born with no drugs and only vit e enemas during pg - 10/14/07
He also had no gas or discomfort while nursing from me being on the diet.
Didn't use the enemas last flare since I was nursing and regretting it now, wasted time in the hospital with drugs that did nothing but ravish my body, now on my own and almost better... vit e, weaning pred, licorice
 

Posted 10/22/2007 7:34 AM (GMT -7)
DeniseW said...
I'm having a lot of trouble letting go and realizing I won't have another baby.
Are you thinking you won't be able to have any more children after surgery?  If so, don't worry too much. I know many women who have gone on to have children after surgery for UC. Apparently, it is a little harder to get pregnant after j pouch surgery than ileostomy surgery, but certainly not impossible. The Pregnancy Forum on any ostomy board or on the J Pouch board will attest to that one :)
 
Good luck with your decision.
 
Shaz
 
I have had an ileostomy for 31 years now due to UC.
 
Moderator of the Ostomy Forum
_______________________________________________
 
I'm not a complete idiot - some parts of me are missing!

Posted 10/22/2007 8:05 AM (GMT -7)
I am 26, have had colitis (with just a few mnths remission in total) for 7 years and just started exploring surgery. I've tried all the drugs out there except for Humira and worry about the effects of the ones I'm on, like long-term use of Imuran. When I met with the surgeon, she said I could have kids, no problem, with a J-pouch but she pushes for a C-section because there are risks delivery could affect the pouch. Sometimes the baby sits on it and it gets sore, etc. but it sounded like nothing terrible. I still haven't decided what to do, but after 7 years of my young adulthood, and never getting fully into remission, I'm getting close. I just worry about the chance the J-pouch may not work (she won't know 'til she goes in) and I really don't want C-sections. With the J-pouch and three kids that means I'll be cut open five times. I would highly recommend you talk to some of the prospective surgeons' patients - this doctor said I need to do that before I decide. My GI doc said of all the patients she's had who have opted for surgery, just about every one wishes he/she had done it a lot sooner.
Posted 10/22/2007 8:07 AM (GMT -7)
What I always wonder is if they can do transplants for heart, liver, kidney etc etc... Why not the intestines? It'd be nice if we could just get someone's nice healthy colon and be UC free!! :)

I wonder if there is any particular reason this type of surgery would not work?
Female, 22, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in hip & lumbar region of spine from long term prednisone use

Current Meds:
40 mg Citalopram (for depression/social anxiety)
125mg Imuran
 
Should also be on supplements and probiotics and other UC drugs but I'm just not good at taking pills...

Posted 10/22/2007 8:12 AM (GMT -7)
Hi Ediekristen

Basically, we can live without a colon which is why money must go into other transplants for organs we can't live without. Also, although our colon is removed, we still have UC in our bodies and it would, more than likely, just come back and affect the new colon :(

They are doing small colon transplants though to varying degrees of success.
I have had an ileostomy for 31 years now due to UC.
 
Moderator of the Ostomy Forum
_______________________________________________
 
I'm not a complete idiot - some parts of me are missing!

Posted 10/22/2007 10:44 AM (GMT -7)
Edie,

They do offer transplants but only of the small intestines.... I just got out of the hospital last Thursday (Mount Sinai in NYC) and I had a roommate while I was there. The surgeon actually offered him a transplant of his small intestines because he only had 6' of intestines left because of blockages and other previous surgeries. He wanted to wait for the transplant because he didn't want to take immunosurpressents.

They do not do Colon transplants because it is not necessary to live, that's exactly what the surgeon said.


--Keith
DX'd with Pan-Colitis June 2005
Current Status: Flaring since May
 
Current Meds:  6-mp & Colocort
Supplements:  None 
 

Posted 10/22/2007 12:52 PM (GMT -7)
A colon transplant will never make sense for a UC patient. You would have to stay on both prednisone and immunosuppressants for life. One of the reasons to have your colon removed for UC is to get off those drugs. As Keith said, you can live a very good life without a colon so it's not going to be an option.

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
 

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