J Pouch Surgery

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Gargamel
Regular Member


Date Joined Apr 2006
Total Posts : 172
   Posted 6/19/2008 6:51 AM (GMT -6)   
I am thinking about a J Pouch Surgery to cure my Ulcerative Colitis and just wanted to know the details of the process.

What happens during the procedure and what sort of test do they do afterwards and are these painful?

What is a Defecography and did you do one?

Thanks

G

ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 6/19/2008 8:00 AM (GMT -6)   
Gargamel,

I haven't had the surgery (yet, anyway) but am thinking of it for the same reasons as well. I have found a lot of information on www.j-pouch.org, as well as just looking up random sites on it for detailed information. It seems like the common way to do it is in two steps, where they first remove the colon and leave some of the rectum for later, and they forms the pouch out of your small intestine but create a temporary ileostomy (where you have an external bag to collect waste) which you keep for a minimum of I think usually 6-8 weeks? But a lot of people end up keeping it longer just because they don't feel ready to have another surgery. Then they go back during the next surgery and connect the pouch to the rectum and close the stoma site (the stoma is the part of your intestine that is pulled through the abdomen in the first surgery), so that now you can go to the bathroom like "normal".

They say most people go to the bathroom 6-10 times a day after takedown surgery, but I'm hoping that it is without pain or urgency so it won't be like having UC anymore, and you'll feel overall more healthy which is the whole point! It takes awhile for the pouch to expand to accomodate more waste, but I've read that after the first surgery they have you do water enemas daily where you hold it as long as you can and gradually increase the amount in order to stretch the pouch and exercise the muscles.

I hope I haven't given any incorrect info, this is just what I've gathered from researching. I'm not sure about the defecography test, but when I looked it up it seems like it's just given in order to diagnosed a problem and they might give one to test the strength of the rectal/sphincter muscles to evaluate for incontinence, but I don't know if it's standard before a j-pouch or not. I hope not because it sounds a little embarassing!! Here's what it is:

Defecography is a technique in which a barium contrast medium is introduced into your rectum after the radiologist performs a rectal examination. The barium is visible within the rectum on X-Rays. During the test, you are instructed to defecate (empty the rectum) on a commode while X-rays of the pelvis are taken. These X-Rays are taken while the person is sitting at rest, straining, squeezing, and during defecation. This test allows the doctor to evaluate the pelvic floor muscles and rectum during defecation. This type of test, although awkward, provides valuable information that may aid your doctor in diagnosing your problem.


Hopefully some menbers will be able to come on here to give you more information from experience, but good luck! Knowledge is power as they say and if you're deciding on surgery you'll be so much better off if you research everything you can so you're not shocked when you wake up afterwards!!
Female, 22, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in hip & lumbar region of the spine from long term prednisone use.

Current Meds:
10mg Lexapro (for depression/social anxiety)
Digestive Advantage: Crohn's and Colitis formula (2 pills per day, started 5/14/08)
125mg Azathioprine
4800mg Asacol (Four 400mg tablets, three times a day)
 
 
 


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5418
   Posted 6/19/2008 8:09 AM (GMT -6)   
Decography is not a standard test before or after jpouch surgery. It's only done if there are post surgical complications. If you are considering surgery the best thing you can do is seek out a surgeon with a lot of jpouch surgeries under his/her belt. It's a complex sugery, more difficult than open heart surgery and requires a lot of expertise. You can surgical recommendations from the jpouch board, www.j-pouch.org With over 6000 members on that site they will provide you with support and recommendations before and after surgery.

I had jpouch surgery 7 years ago. While not like having a healthy colon it beats the crap (no pun intended) out of having UC. I hike long distances (100-200 miles), backpack, and cycle with no problems. I have no pain or urgency and I don't need to map out all the bathrooms in town before leaving the house. I have never regretted my decision.

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


Sean G
New Member


Date Joined Jul 2008
Total Posts : 3
   Posted 7/1/2008 6:41 AM (GMT -6)   
Hello G.
 
I had my J Pouch surgery in 2005. In 2004 I had my entire large bowel removed due to a very bad condition similar to UC. For 12 months I lived with a iliostomy bag. As a 38 yr old male this was very hard to get used to.
 
I gather you know the procedure for the surgeryie using part of your small bowel to make the J pouch. As you dont have a bag at the moment your procedure will consist of 1 op only. It is 2 when yoiu have a bag with the op 3 months apart.
 
I didn't find the surgery to bad. Yes it is a big op but i had the most fantastic surgeon. They used the same cut as they used 12 months previous when I was very sick and they removed my bowel so I sort of knew what to expect however the surgery was not as bad as the first one.
 
I guess the hardest thing for you to get used to will be having to go to the toilet allot more often and of course it will be watery for the rest of your life but anything is better than the pain of UC as you and I both know. I dont take any medication what so ever. Sometime i may take an imodium or 2 but you wont need to take them everyday for the rest of your life.
 
The surgery is well worth it and you wont regret it. I just completed a half marathon so you can do whatever you want.
 
Hope it all works out for you.
 
Sean. 

Sean G
New Member


Date Joined Jul 2008
Total Posts : 3
   Posted 7/1/2008 6:46 AM (GMT -6)   

Sorry G gave you a little bit of wrong info. Like me you will have two ops. The second will be about 3 months later whilst the join from the j pouch to your rectum heals and becomes nice and strong.

3 years after my j pouch I would go to the toilet approx 6 to 8 times in a 24 yr period. Sometimes more depending on what and how much I have eaten.

 

Tip, dont eat corn, peanuts etc. You wont be able to digest them so it will be like firing bullets when you go.


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5418
   Posted 7/1/2008 8:09 AM (GMT -6)   
And please don't take everyone's food/digestion experience to be the same with you. I regularly eat corn and peanuts and don't have the same problems that Sean has. Everyone is different and you should eat as wide and varied a diet without imposing limitations. There is not one food out there that I don't eat due to my jpouch.

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


Sean G
New Member


Date Joined Jul 2008
Total Posts : 3
   Posted 7/1/2008 8:38 AM (GMT -6)   
Yes G of course this is just MY experience and opinion in relation to diet. Thanks for pointing this out Sue.

Gargamel
Regular Member


Date Joined Apr 2006
Total Posts : 172
   Posted 7/1/2008 8:46 AM (GMT -6)   
What's the chances of having a one-step surgery, is it more likely to fail?

Has anybody here opted for this instead of the usual two-step procedure?

G

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5418
   Posted 7/1/2008 8:59 AM (GMT -6)   
A one-step is dependent upon your health and your recent pred use. It's ultimately up to your surgeon to determine if you are a candidate and sometimes they don't know until the patient is in the OR. I opted for a 2 step for personal reasons. Lots of people have opted for a one step. You can meet them at www.j-pouch.org

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


Mark & Megan
Regular Member


Date Joined Jun 2008
Total Posts : 89
   Posted 7/1/2008 10:13 PM (GMT -6)   

Hey G.

You may want to check out my blog below, on there are my photos from the 2 surgeries and details about BMs, prep tests, etc...


Mark & Megan
7 yrs UC to 1 year J-Pouch
Surgery Photo & Journal below: http://ucstory.wordpress.com/
We are updating regularly it isn't just the surgery photos but info all about UC, Surgery and IBD!


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1754
   Posted 7/2/2008 4:47 PM (GMT -6)   
I think most people end up going for the two-step. I'm hoping to get my surgery at the Cleveland Clinic, and they say that they do one-step VERY rarely, so it may also depend on your surgeon.
Female, Age 19, Dx w/ UC August 2007
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis), 1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, 1 DanActive, Remicade (2nd infusion 06/26/08), 2.4 g Lialda
*exploring the option of surgery
 


TAMMYUC
Regular Member


Date Joined Aug 2008
Total Posts : 20
   Posted 8/3/2008 12:21 AM (GMT -6)   

ComedyDork,

I too am considering the j-pouch and will have it done at the Cleveland Clinic. Do you live close by? My GI is there and I asked him for a surgeon and he named Jon Vogel as one (who I will met with next) week. I also asked him if thought there was a better place to have it done and he suggested the Clinic.

This is my first posting hope it goes in the right area.

TAMMYUC

ComedyDork said...
I think most people end up going for the two-step. I'm hoping to get my surgery at the Cleveland Clinic, and they say that they do one-step VERY rarely, so it may also depend on your surgeon.


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1754
   Posted 8/3/2008 11:20 AM (GMT -6)   

Hi Tammy,

I live 4 hours away from the Cleveland Clinic, but CC is rated #2 for Digestive Disorders in the country so it's worth the drive. I saw Dr. Remzi at CC, but I'm pretty sure all the surgeons are good at CC. Let us know how your consult w/ the surgeon goes.

As for one-step vs. two-step procedures, Dr. Remzi said he would not do it on me b/c I've been on Remicade and have been hospitalized before. That was disappointing b/c I've never been on pred and I don't seem to have UC as bad as others, so I was really hoping for a one-step. Oh well.


Female, Age 19, Dx w/ UC August 2007
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis), 1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (3rd infusion 07/08), 2.4 g Lialda, 1 Forvia, 6 Colazal/day
*exploring the option of surgery
 


tanny
New Member


Date Joined Sep 2006
Total Posts : 2
   Posted 8/29/2008 8:25 AM (GMT -6)   
I had two step jpouch surgery on 12/28/07 after 28 years of ulcerative colitis.  Doc said I was oldest(58) person he had done the surgery on, but everything went quite well with both surgeries.  The three months I wore the ostomy bag gave me great compassion for anyone who wears one permanently.  While I am not squeamish at all, the constant hassle of changing the bag and dealing with inflammation around the stoma(I also quickly developed an allergy to the glue on the bags which caused itchiness and rash over whole body, necessitating constant use of cortisone cream) was extremely frustrating.  The jpouch is a great improvement for me in all ways over my tired old colon.  Now I have way less bleeding(small amount from inflammation around the cuff), much fewer bowel movements(I was having between 15 and 20 per day with the colon, and now have approx. 10/day with the jpouch), and none of the extreme constant pain and constant bleeding of the colon.  Definitely an improvement over the colon. Also, I do have to coat the anus with vaseline after every BM to prevent the outside of the anus from becoming inflamed.  I don't know if this is a common problem. To keep the number of BM's manageable, I only eat one meal/day.  Intuitively, the more I eat, the more often I defecate.  Immodium for me is very unpredictable and I did have an episode of serious constipation requiring several warm water enemas to fix, so I try to avoid using immodium.  Some people have good luck with it.  If I drink a lot of water quickly, it increases diarrhea.  Drinking more slowly has less of that effect.  Overall, the jpouch is a great improvement on a diseased colon and a way way better option than the bags, but of course there are some tradeoffs.  Good luck. 

Post Edited (tanny) : 8/29/2008 7:29:08 AM (GMT-6)


Realstinger
New Member


Date Joined Jul 2010
Total Posts : 2
   Posted 7/21/2010 7:49 PM (GMT -6)   
ok Folks , here is my story: I was 33 yrs old and fought colitis for 6 years , i tried study meds but no good did they do. my regular colon doc in a small town was killing me with excessive doses of prednisone. then one day he told me he wanted to do a complete ostomy. I dumped him and went to Atlanta to some real surgeons. My surgeon was new in the Atlanta area and in june 1998 i had the J-pouch surgery, 10 weeks later i had the small intestine reattached from the temporary ostomy. It has been well worth the operation. then 2 years later I stated having blockages in my small intestine were they reattached the intestine. so in august 2005 i went back to Atlanta to another colon and rectal surgeon. she opened my long scar up and removed scar tissue on the inside of my body cavity because it was choking my small intestine. six months later i was getting blocked up again in the same spot were the reattachment was made. hardheaded i waited and used laxitives until June 25th 2010 . i explained to my surgeon that she should have went into my ostomy site in 2005 and cutout the scar tissue in the intestine. This time she did just that and told me i would have a 20% chance of ever having surgery again on the small intestine. So most people i know that has J-pouches never have scar tissue problems, i guess im just one of 8000 . It has changed my life and i no longer take life for granted. So please stop the suffering with UC, and get the J-pouch . only a few have mild complications after surgey. Jerry

Realstinger
New Member


Date Joined Jul 2010
Total Posts : 2
   Posted 7/21/2010 7:50 PM (GMT -6)   
Now I am 51 years old and pray i never see another operating room. Jerry

Anthony1977
Regular Member


Date Joined Jan 2009
Total Posts : 413
   Posted 7/21/2010 8:21 PM (GMT -6)   
This series of surgery has saved me. I will be back to my fire department in another two months. Nuff said! ;) I went for the 2 step process as my surgeon at Mt. Sinai would not do a 1 step. My life is back plus my car seat in my truck is also happier ;)

susans53
Regular Member


Date Joined Jun 2010
Total Posts : 218
   Posted 7/21/2010 8:51 PM (GMT -6)   
Realstinger-10 years after pouch surgery and 3 years after gall bladder surgery I too have developed scar tisue that are causing me problems. I'm glad to see that your surgeries resolved things as I have an appt with a surgeon on Friday and am scared of more surgery.
UC 1996
5 asa, predisone, 6 mp
X-mas present- Dec 26, 2000, Emergency j-pouch surgery
Multiple complications, J-pouch redo- July 3,  2001.
Take down-Jan 3,  2002
Chronic pouchitis: cipro, pentassa, xifican, cortioam, canassa, leviguin, lexapro, vit D, fish oil, probiotics, lot's of other vit's
Gall bladder out-Oct 1997
Latest flare April 27 2010 Hosptial for 1 week-remciade
Possible CD, Possible pouch removal-anxiety-can you blame me?
Adhesions


Collicat
Veteran Member


Date Joined May 2009
Total Posts : 823
   Posted 7/22/2010 8:23 AM (GMT -6)   
Gargamel...I can relate my 18 year old son's story later, as I am busy at work, but our bullet points:

He had three step surgery starting last fall due to being very ill with ulcerative colitis. We found the best possible colo-rectal surgeon that we could and even though he had many complications it was SO worth while. He is 5 months post his reversal and doing GREAT. He is off all medications, is completely healthy, can make plans and keep them, has no pain or urgency, can eat anything, has about 6 BMs a day (depending on what he has been eating), sleeps through most nights, has A TON of energy (more than he can remember) and is simply living life as a teenager should.

Someone mentioned that you would always have watery BMs....not true...it still amazes me but his BMs are mostly formed but just smaller....the pouch starts to learn to absorb water.

Even though it was a long and bumpy road this was the best possible decision that we could have made.

Wishing you the best,
Cathy (and Dillon) yeah

snugglesaurus
Regular Member


Date Joined Apr 2010
Total Posts : 201
   Posted 7/22/2010 7:51 PM (GMT -6)   
Just my story on the defocagram - you sit on this PVC type toilet with a trash bag as the "bowl" to catch the barium when you push it out. You're literally in the middle of the room - up off the floor and able to touch the ceiling if you wanted to.. all while sitting on the PVC toilet and they're taking a video of you trying to push out the barium paste (or lack thereof).

I haven't had surgery - it was testing to see what rectal issues I have. I have a rectocele (among other things) and the two surgeons I've visited with have not been super concerned with it.
Diagnoses: Appendicitis, Terminal Ileitis, Crohn's, Celiac Disease, IBS-C, Chronic Constipation, Colonic Inertia, Rectocele, Anismus
Tests: 2 Colonoscopies, 2 CT scans, Sitzmark Test, Anorectal Manometry, Food Allergies, Thyroidism, Pudental Nerve Study, Defacogram, SMART Pill, Electromyogram, Celiac Panel, Small Bowel Study, Gastric Emptying Study - Solids

Tried: Pentasa, exercise, diet changes, pro-biotics, mineral oil, vitamins, laxatives, stool softeners, Miralax, Amitiza, anti-depressants, fiber supplements, water enemas, Fleet enemas, suppositories, mineral oil, phenergan, Zofran

Future: Biofeedback (beginning mid-July)

"You can either sit on the bench or get up and play"

Atlanta, GA


Handsomfreddy
New Member


Date Joined Jul 2013
Total Posts : 3
   Posted 7/14/2013 7:10 PM (GMT -6)   
Hey Everyone. I had a sub total colectomy about 3 weeks ago due to a never ending UC flare. Had complications with the surgery (abscess formed) terrible screaming pain for 2 days (I was that guy on the hospital floor) before they figured out what was wrong. After that had an NG tube for 3 days (nightmare). Anyway all in all pretty rough experience going for the first procedure, I was in the hospital for a total 32 days, 15 of those post op. However, I was pretty sick having run out of medication options, not even prednisone was hacking it (100mg dose!). Now that the first procedure is behind me I was wondering if anyone can give me some insight into how rough a recovery (surgical pain and bowel pain wise) the 2nd stage, J-pouch fashioning surgery is. I know the story with the 6+ bowel movements a day + watery stools, and after UC that sounds like a blessing. My doctors and surgeons want me to wait at least 5-6 months due to the severity of my now eliminated ulcerative colitis (I never get sick of saying that). I'm vetting surgeons right now as well, I have an appointment at Cleveland Clinic (Florida) tomorrow; supposedly its the place to go in the southeast. Any tips, suggestions, comments are appreciated! Thanks again.

Done
New Member


Date Joined Dec 2013
Total Posts : 1
   Posted 9/23/2014 6:51 PM (GMT -6)   
Hi everybody,

I am post op 3 weeks from have my stoma taken down. I am adjusting to my new plumbing as best I can and it continues to get better.

I was diagnosed with UC back in 2000 and led a pretty quiet life with the disease. I mostly took Asacol and prednisone for flare up. During the past couple of years whenever I tried to quit smoking I would have a flare up. Finally in October of 2013 I had "that" flare up that would not respond to any type of medication. I was in the hospital for about 20 days before I was presented with two options. One go to Mayo Clinic and my immune system wiped out with biological drugs that gave little promise of never having a flare up again. 2 take the surgical route. I had my colon removed on October 23, J-pouch on April 30th and finally had my stoma taken down on August 28th.

So, I lived with the ileostomy or bag for about 9 months. I encountered every possible difficulty that you could possibly imagine. Finally about a month before my " take down" my skin finally healed and the bags would last 2 whole days.

The I chose surgery over medication is/was two fold. I was tired of taking drugs that we're not longer effective and did not want to start taking drugs with radical side affects that would not cure my UC only maybe put it back into remission and my daughter was 3.5 yrs old at the time and did not want to see her growing up watching me be sick.
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