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Jsanders505
Regular Member


Date Joined Mar 2008
Total Posts : 94
   Posted 8/25/2008 11:29 PM (GMT -6)   
If you have had j pouch surgery do you regret it?

suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 8/26/2008 8:08 AM (GMT -6)   
Over 92% of people who have had jpouch surgery are satisfied with the results. I am one of them. It's not like living with a healthy colon but it's also not like living with chronic UC. I have never regretted my decision to have surgery.

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


GISGuy31
Regular Member


Date Joined Feb 2008
Total Posts : 79
   Posted 8/28/2008 1:58 PM (GMT -6)   
I'm in the process of getting the J-pouch surgery. I had one surgery where they just removed the colon, because my internal organs were so soft from the year of prednisone, they couldn't hold stitches or staples. I now have a temporary ileostomy. Ironically, I'm living the "worst case" scenario now if my j-pouch ever fails. All I can say, is if this is the worst case scenario, it's a million times better than living with UC. My UC was so bad, I was sleeping 14 hours a day and still felt like I was dying. 8 weeks after surgery to remove the colon I was back to normal. I'm currently able to eat and drink everything again and can travel and can do all of the things I was able to do before.

I don't regret having the surgery, and look forward to my other surgeries to see where the j-pouch option takes me.

Good luck.
Age 0 to 30 - 100% healthy, no meds, no doctor visits, no hospital stays
Oct. 2006 - Symptoms of UC began
3/5/2007 - Diagnosed with UC - Pancolitis (entire colon involved)
20mg-40mg/day Prednisone, 4.8 g/day Asacol - didn't work at all
10/12/2007 - Steroid Induced Osteoporosis from Prednisone and Anemic
add Actonel (75mgx2 pills/month) and daily iron pills
2/12/2008 - open Subtotal Colectomy with Temporary Ileostomy Surgery
8/05/2008 - Unexpected surgery to remove blockage caused by scar tissue
Jan. 2009 - J-Pouch Surgery and possible Ileo Reversal Surgery Scheduled
"When life gives you lemons...make lemonade"


ANTIGUA9
New Member


Date Joined Aug 2008
Total Posts : 16
   Posted 8/28/2008 3:41 PM (GMT -6)   
GISguy - could you give us more information about your life post-surgery? I have had UC for 4 years. Every few months I flare and prednisone is the only thing that controls it so I then spend the next few months getting off of that. I'm going to talk to my GI about the surgery at my next appointment because I don't want to keep damaging my body with the steroids. Anyway, what was surgery, recovery like? How many bathroom trips now? How much maintenance is the bag? How noticeable is it? If I've asked too much, sorry - just don't answer. But any information you could share would be helpful to those of us considering our options. Thanks.

bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 8/28/2008 9:00 PM (GMT -6)   
Another surgery success story...gotta love that!
Moderate Pancolitis
Dx'd 05/2007
3 Lialda per day
Generic Rowasa daily or every other night
Probiotics, Bowel Soother, Fish Oil, Calcium, Multi Vitamin and Melatonin
Trying to reduce sugar in my diet but cannot tolerate artificial sweetners
I excersice daily
Did I happen to mention I HATE this disease!!!


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 8/28/2008 9:07 PM (GMT -6)   
BTW,

The new GI Doc I saw today said the 8% failure rate is a significant amount...
 
I say, find a surgeon that only has a 4% or less fail rate if you can.


Moderate Pancolitis
Dx'd 05/2007
3 Lialda per day
Generic Rowasa daily or every other night
Probiotics, Bowel Soother, Fish Oil, Calcium, Multi Vitamin and Melatonin
Trying to reduce sugar in my diet but cannot tolerate artificial sweetners
I excersice daily
Did I happen to mention I HATE this disease!!!

Post Edited (bbc) : 8/28/2008 9:22:25 PM (GMT-6)


Jsanders505
Regular Member


Date Joined Mar 2008
Total Posts : 94
   Posted 8/28/2008 11:01 PM (GMT -6)   
BBC, by that do you mean that 8% is abnormally high? Or is that really the average. My chance of getting the disease was 1/10,000 so yeah... im not testing my luck anytime soon if i dont have too.

And why can't they do a colon transplant or develop something besides the external bag that functions like a colon? Its 2008. Wearing a bag seems outdated. I don't think alot of people understand the psycholgical aspect of the bag. Im 21. I feel like I would rather die than go through that. My disease at this moment is absolutely miserable but the thought of a permanent bag scares me and depresses me to the point I can't take it at times.

Anyone that is able to handle that is a bigger, better person than I am.

Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
   Posted 8/28/2008 11:18 PM (GMT -6)   

My daughter had step 1 of 2 surgeries on July 3. So far she has no regrets. She is scheduled for her last surgery on November 10 and is starting to look forward to it. She is looking forward to not being sick and out of school as much as she has the past 2 years. She is excited about not having to worry about when she will flare again.

According to her surgeon, she is cured of UC. She had a pouchoscopy last week and everything looked great. She is looking great. All the prednisone weight (and some extra) has come off. She no longer has her moon face. She even took her senior pictures tonight!

Last week the surgeon said to her "don't you feel much better than you did before the surgery?" To which my daughter replied "not really since I was in remission right before surgery"! She definitely took the surgeon off guard. But she did go on to say that she was looking forward to not worrying about flaring ever again.

 
--Mom of bratcat (17 years old) and nonamejames (19 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
 
Son nonamejames was diagnosed with Crohns in Spring 2008
Asacol, Pentasa, 6-mp


Jsanders505
Regular Member


Date Joined Mar 2008
Total Posts : 94
   Posted 8/28/2008 11:22 PM (GMT -6)   
Thanks Bennie that is encouraging. Best wishes to your daughter and family!

bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 8/29/2008 12:06 AM (GMT -6)   
Jsanders505 said...
BBC, by that do you mean that 8% is abnormally high? Or is that really the average. My chance of getting the disease was 1/10,000 so yeah... im not testing my luck anytime soon if i dont have too.

And why can't they do a colon transplant or develop something besides the external bag that functions like a colon? Its 2008. Wearing a bag seems outdated. I don't think alot of people understand the psycholgical aspect of the bag. Im 21. I feel like I would rather die than go through that. My disease at this moment is absolutely miserable but the thought of a permanent bag scares me and depresses me to the point I can't take it at times.

Anyone that is able to handle that is a bigger, better person than I am.
Jsanders
The GI doc meant that 8% is a high enough % of failures to worry about complications.
The probably can't do a colon transplant because the brain will send cells to attack the new one.
You can wear the bag under your shirt until you go for the J pouch surgery.
Moderate Pancolitis
Dx'd 05/2007
3 Lialda per day
Generic Rowasa daily or every other night
Probiotics, Bowel Soother, Fish Oil, Calcium, Multi Vitamin and Melatonin
Trying to reduce sugar in my diet but cannot tolerate artificial sweetners
I excersice daily
Did I happen to mention I HATE this disease!!!


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 8/29/2008 12:07 AM (GMT -6)   
Bennie said...

My daughter had step 1 of 2 surgeries on July 3. So far she has no regrets. She is scheduled for her last surgery on November 10 and is starting to look forward to it. She is looking forward to not being sick and out of school as much as she has the past 2 years. She is excited about not having to worry about when she will flare again.

According to her surgeon, she is cured of UC. She had a pouchoscopy last week and everything looked great. She is looking great. All the prednisone weight (and some extra) has come off. She no longer has her moon face. She even took her senior pictures tonight!

Last week the surgeon said to her "don't you feel much better than you did before the surgery?" To which my daughter replied "not really since I was in remission right before surgery"! She definitely took the surgeon off guard. But she did go on to say that she was looking forward to not worrying about flaring ever again.

 

Sounds like your daughter is well on her way to a better long term life!


Moderate Pancolitis
Dx'd 05/2007
3 Lialda per day
Generic Rowasa daily or every other night
Probiotics, Bowel Soother, Fish Oil, Calcium, Multi Vitamin and Melatonin
Trying to reduce sugar in my diet but cannot tolerate artificial sweetners
I excersice daily
Did I happen to mention I HATE this disease!!!


Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
   Posted 8/29/2008 12:25 AM (GMT -6)   
bbc said...
Sounds like your daughter is well on her way to a better long term life!

That is what we are hoping for. That's why we chose for her to have the surgery now. This was not an easy or quick decision. She first flared less than 2 years ago. We faced her UC with a very positive attitude (albeit with somewhat rose-colored glasses at first).  Our attitude was she was dealt a rotten hand but with medicine and an awareness of what to look for, she would and could go on with a new "normal" life. Unfortunately medication did not keep her in remission and her flares were taking over her way of life.
--Mom of bratcat (17 years old) and nonamejames (19 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
 
Son nonamejames was diagnosed with Crohns in Spring 2008
Asacol, Pentasa, 6-mp


Charlotte Gilman
Regular Member


Date Joined May 2008
Total Posts : 100
   Posted 8/29/2008 12:30 AM (GMT -6)   
Jsanders505 said...
BBC, by that do you mean that 8% is abnormally high? Or is that really the average. My chance of getting the disease was 1/10,000 so yeah... im not testing my luck anytime soon if i dont have too.

And why can't they do a colon transplant or develop something besides the external bag that functions like a colon? Its 2008. Wearing a bag seems outdated. I don't think alot of people understand the psycholgical aspect of the bag. Im 21. I feel like I would rather die than go through that. My disease at this moment is absolutely miserable but the thought of a permanent bag scares me and depresses me to the point I can't take it at times.

Anyone that is able to handle that is a bigger, better person than I am.


The 8% number is the number of people who have had j-pouch surgery and report something other than "good" or "excellent" quality of life afterwards. (Those are way worse numbers than the numbers for active UC, though I can't remember those at the moment.) The overall failure rate of the surgery--number of people who need to go to a permanent ileostomy--is also nearly that low. To put it in a different perspective, that's also far better statistical likelihood of success than any individual medical treatment for UC.

On the other hand, more than 90% of people with ostomies also report good or excellent quality of life. Honestly (and imagine me saying this in a kind tone of voice, because that's how I mean it), it sounds like *you* don't really understand the psychological aspect of the bag. Humans, in general, are very bad at predicting our emotions in hypothetical future circumstances. I personally like living, and when I was truly faced with the actual, nearish-term threat of death without an ostomy (I had dysplasia), life with one started to seem like a very good bargain. Before the surgery, I just had to take on faith that all the people with ostomies saying that they were having good lives weren't deluding themselves. Now I know that they weren't. (My j-pouch [in use for almost two months] has also been fantastic so far.)

Shortly after my dysplasia was diagnosed, a good friend of mine was diagnosed with a Stage 3 breast cancer that hadn't been visible on her previous year's mammogram. When I see what she's going through--and all with the very real risk that she will yet die of her cancer--the ostomy seems like small potatos. It's freaky anatomy; that's it.

If I'm disappointed in myself for anything about how I dealt with UC, it's that it was the threat of a shortened life--and NOT the vastly reduced quality of the life I was living--that finally helped me be really okay with having surgery. I wish I had valued my quality of life more, and earlier. I would urge you to consider it when you think about the benefits of surgery vs. living with the disease as you're experiencing it.

suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 8/29/2008 8:16 AM (GMT -6)   
Colon transplants will never be a viable option for UC patients. Organ transplant patients must take prednisone along with other immunosuppressants (for life) to prevent organ rejection. Taking these drugs is the EXACT reason why UC patients opt for surgery-to get off of them.

Although my life isn't perfect with a jpouch it's far better than with chronic UC and I think any UC patient who has opted for any of the UC surgeries would concur. The good news is that you don't have to do anything and can continue to manage your disease. I highly recommend that you not even pursue surgery until you can get 100% on board with it. That means doing research, getting educated, and talking with people who have had the surgery you desire. Recovery and expectations will be better met if you have done your homework.

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


GISGuy31
Regular Member


Date Joined Feb 2008
Total Posts : 79
   Posted 8/29/2008 12:46 PM (GMT -6)   
ANTIGUA9 - My life after my defective colon was removed has been wonderful. These are the things that people cannot seem to understand who totally rule out the surgery option or don't want to consider it. Even when your colon is in remission and you feel fine, on the cellular level it is still under attack by your body no matter what drugs your taking. This is why you have to get the constant colonoscopies years after your initial UC diagnosis because these inflamed cells can mutate into cancer and you get your colon removed anyway at age 50 -70. You are constantly balancing on the knife's edge between being somewhat healthy and your next flare. To me the long term side effects of the drugs used to treat UC outweighed the risks from the j-pouch surgery, and my UC was intolerable and I never went into a "remission." This was why the j-pouch surgery was sort of a no brainer choice for me.

Here's the details of my surgeries so far:
Surgery 1 (total colectomy - removed all of my colon but left the rectal stump)
about 2 weeks post op I could tell that the constant pain I was in from UC a year earlier was gone, and I just had pain from the incision and all over my abdomen where they removed the colon I guess. I was off of work for 8 weeks. By the 7th week I was able to walk around easily - wasn't hunched over like the weeks right after surgery. I couldn't stand up straight for about 5 weeks post op. You are very week after these surgeries and it takes about 2 months before your energy levels get close to normal, I mean normal before getting UC. I got a lot of rest like 14 hours of sleep throughout the days and nights.

It took about 2 weeks after I returned back to work before my mind caught up to the way I was before getting UC. My job is very detailed (engineering and GIS) and I have to think quickly on my feet all the time and concentrate the whole time I'm there. With UC, I couldn't do that, so my mental state and mental speed came back about 10 weeks post-op. I began traveling and going out into the field about 12 weeks post op, still tired quickly, so I avoided climbing large hills or going down into steep embankments. about 14 to 15 weeks post op, I was able to do yard work again, like trimming tree branches and bushes, something I couldn't do the year before. I would say about 3 to 4 months post-op your normal, how you were before UC and off all UC medicines and prednisone. With a stoma, you'll have a weight lifting restriction of 30 lbs, because they don't want you to get hernias where your stoma is located. With me I seldom lift more than that, and if I do, it's very rarely,usually adding 40 lb bags of salt to my water softener and I try to use my back.

Living with a bag wasn't a big issue for me, since I expected it and it's temporary. I spent the first month after surgery researching the different bag systems out there. I settled for the Hollister 2 piece system, and for me the wafers last a week, so I change them every Sunday morning in the shower (best place I think to do bag changes) and change the snap-on bags with the filters (so they won't fill up with gas and become like a balloon) every 2 to 3 days. This seems to work perfectly for me. I mastered this process after a few changes. I've had some leaks, mostly from letting the bag fill up too much, mainly when I'm at home or sleeping. Yes, you can sleep on your sides and on your stomach if you want, but one thing I forgot to mention, it takes about 4 weeks post-op before you can sleep on your sides, your stomach and abdomen will hurt too much so you'll wind up sleeping on your back most of the time. I empty my bag about 6 times a day. The only limitation from the bag when doing activities is that you cannot jump into a pool, or it will tear off, I didn't experience this, but one of my hospital roommates who had both ileostomies and colostomies from Crohn's warned me. He also told me about changing the bags/wafers in the shower...both great advice. You can swim and go into hot tubs without any problems. So I don't know what other limitations there are, I haven't found them yet.

So living like this is the worst case scenario for the 'j-pouch' surgery - living with a permanent end ileostomy if the j-pouch ever fails. So, I guess I was lucky enough to get a 8 month preview if my j-pouch ever fails, which I know is a million times better than living with UC. I'm able to eat everything, drink everything including alcohol, and do everything I did before UC. The only things I notice is that I need to drink more water throughout the day and during the summer and to me the temperatures outside feel 10 degrees hotter than life before UC, so I avoid going outside when it's in the 90's or upper 80's.

However, with all that said, I cannot say surgery will be easy and complication free - so be ready for some, just in case. I developed a blockage to my small intestine on July 30th from scar tissue from when they removed my colon back in February, which squeezed my small intestine causing a food blockage. I was in the hospital for 18 days, the first week they were waiting to see if it would pass on it's own (since they say 70 to 80% of them do), then they operated and removed the scar tissue and also a section of my small intestine twisted upon itself, I guess they just undid the twisted portion, they didn't cut anything out, and now everything is passing through just fine. They went through my old 10" incision and the pain from that surgery went away 4 weeks post op and I'm like how I was 8 weeks post op from my first surgery.

Unfortunately, my j-pouch surgery was scheduled on Sept 25, because of this recent surgery, I have to push it back 3 months, they don't want to go through the same incision without allowing 3 months of healing between surgeries, I guess it gets too soft and may tear, or you may get even more excess scar tissue. Also, when they operated to remove the scar tissue, I had a hemotoma (internal pocket of blood) build up behind the incision, they removed a couple of staples, opened it up with the end of a pair of scissors, and squeezed my belly like like a big zit, and the nurse got two gauze pads of blood out of it. It didn't hurt that much, but I just amazed a nurse could jab you with a pair of scissors like that. I had another opening lower on my incision opened almost after surgery to allow for some other drainage. It began draining mucus and clear liquid. I just found out today that when the leave the rectal stump, it forms mucus and clear fluid and I normally drained it out my bottom every 3 days (yes, you'll still use your butt with the colon removed and the j-pouch not formed yet), well, I'm one of the 15% of the patients who are lucky enough to have this stomp find a new drainage route and it now empties out one of my holes in my incision that they made for drainage.

It only drains about 2 table spoons a day of mucus/clear liquid with white and yellow specks in it. It almost looks like chicken broth with some fat in it and it doesn't smell or anything. So now instead of going out the normal route, it comes out of my belly. They told me that the new duct connecting the rectal stump to my incision hole will not close until they do the next operation. The hole in the incision they made to allow drainage will heal to the size of a dime or slightly smaller. This hole will continuously drain, but it's only 2 table spoons worth, until the next surgery when they remove the rectal stump and form the j-pouch, so I'm considering having the next surgery in November to do this, because I don't want to have an open wound too long.

So these are my only setbacks, but not really that bad. Otherwise, I'm living normally again and the j-pouch surgery will make things even better. I talked to some people about the scar tissue thing, it seems like if you get the scar tissue issue, it happens 6 - 12 months after surgery, and if they remove it, then it doesn't really return, so then your sort of out of the woods with that complication 12 months post-op, I guess.

Sorry for the long post, hopefully it was informative.
Age 0 to 30 - 100% healthy, no meds, no doctor visits, no hospital stays
Oct. 2006 - Symptoms of UC began
3/5/2007 - Diagnosed with UC - Pancolitis (entire colon involved)
20mg-40mg/day Prednisone, 4.8 g/day Asacol - didn't work at all
10/12/2007 - Steroid Induced Osteoporosis from Prednisone and Anemic
add Actonel (75mgx2 pills/month) and daily iron pills
2/12/2008 - open Subtotal Colectomy with Temporary Ileostomy Surgery
8/05/2008 - Unexpected surgery to remove blockage caused by scar tissue
Jan. 2009 - J-Pouch Surgery and possible Ileo Reversal Surgery Scheduled
"When life gives you lemons...make lemonade"


ANTIGUA9
New Member


Date Joined Aug 2008
Total Posts : 16
   Posted 8/30/2008 12:20 AM (GMT -6)   
Thanks so much GISguy. In one way there's so much to consider, then on the other hand I think "What am I waiting for?" Especially that with this disease there is an increased rate of colon cancer after several years. As my husband aptly said "If you had colon cancer, you wouldn't think twice about surgery to remove it. So at least you have that option. With some diseases, there are no options." Thanks again for the detail.
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