J-Pouch Surgery: 1 Year Anniversary!

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Devin
Regular Member


Date Joined Dec 2005
Total Posts : 40
   Posted 11/9/2009 2:05 PM (GMT -6)   
Hi All,
 

Since I'm fast approaching the 1 yr anniversary of my J-Pouch (reversal aka ileo-anal pouch) surgery, I thought I'd post an update to let you know my experience thus far, especially for those interested in getting this operation.

 

My background: I’m a 31 yr old guy from Canada.  I had 4 yrs of severe UC (2002 - 2006); nothing could tame it and my life was in shambles.  I got a colectomy with ileostomy in Aug 2006 - this surgery turned my life around and was well worth it.  I highly recommend this procedure to someone who is at their wits end with UC.  But 2 yrs + with the ostomy was enough, so I opted for the J-Pouch in Nov 2008. 

 

The first few months after my J-Pouch surgery were difficult.  I suffered from all the typical post-op problems: abdominal pain, bloating, excessive BMs, urgency, butt burn, loss of appetite, weight loss, I even had a hellish intestinal bacterial infection for two weeks (which antibiotics cleared up pretty quickly)...During my first months post op I frequently asked: will this ever end? Or, did I make the wrong choice - should I have kept the ostomy?  Sometimes it felt like I had UC again.  Unlike my prior surgery, where I had nowhere to go but up, it was tough to go from a relatively healthy state with the ostomy to feeling so terrible again.    My recovery was at times frustrating and depressing. 

 

But, I learned that patience, LOTS and LOTS of patience, was needed.  The body needs time to recover from such a traumatic experience; what's more, the pouch needs time to expand and adapt.  Eventually, most of the problems I described above practically disappeared or were greatly reduced.  Things also could have been worse; thankfully I have not suffered from pouchitis, leakages, blockages, hernias, or erectile disfunction; I know that some J-Pouchers have experienced these issues.

 

A year post-op, thanks to God and my friends/family/doctors, my quality of life is pretty good.  I can go to work, go on road trips, play sports, go to parties, eat almost anything I want, have relationships with the opposite sex etc...pretty much like a "normal", healthy person.  Just four months after my surgery I went on a 7 day ski trip with my buds in British Columbia.  We're all pretty hardcore into the backcountry terrain, so I was nervous that I wouldn't be able to keep up, my newly healed abdominals would give way, or I'd have to take numerous poops in 10 ft of snow (ever try to do #2 in deep snow in -30 C? I do not recommend it! ), but I was amazed and thankful that I made it through the trip like I was almost 100% - my friends were amazed.  Soon they forgot I even just had surgery and wouldn't cut me any slack :-)  That experience was a real breakthrough for me - it gave me a lot of confidence and put some of my irrational fears and anxiety into perspective.

 

But the J-Pouch is far from perfect.  I still have 10+ BMs a day (I know it sounds like a lot, but it's actually not THAT bad - because unlike UC, you can usually control when you go).  That being said, sometimes I have a minor feeling of urgency and have to find a bathroom quick.  Gas can be a real problem, especially when I have carbonated drinks like beer.  I have to watch what I eat, or pay the price later on - spicy food is a real no-no for me.  They say I should intake a lot of water because my body is less efficient at absorbing it, and I do feel frequently thirsty, but the more fluids I have the more watery the stool is - so it's kind of a Catch 22.  And, because the pouch never stops functioning, I have to wake up at least twice a night to go to the can.  This can leave me really exhausted in the morning.  Any J-Pouchers out there with tips on how to get a better sleep? I'd love to hear from you.

 

I don't take any meds now.  Just a multi-vitamin and Metamucil twice daily to thicken things (1 tbsp before breakfast, 1 tbsp before dinner - took me a long time to get the dosage right for me). 

 

It's been, and continues to be, a challenging experience, but overall I'm happy with my decision to get the J-Pouch. No matter what treatment route we decide, life will never be the way it was before IBD for any of us.  But in my experience, the J-Pouch may be the closest I get to normal.  I've read that 90% of people are satisfied with the J Pouch surgery - I would count myself as one of those.  

 

Take care, 

 


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 11/9/2009 4:25 PM (GMT -6)   
Devin,

Congratulations with your success. You should find that things continue to improve in your first 5 years post surgery. As for sleep; I get up 1-2X per night but I know I could reduce that if I would alter my diet. I eat well over 32 grams of fiber per day. On those nights I really want to sleep I will eat meat and rice or potatoes. One thing that really helps me fall back asleep quickly is exercise. I work out, hard, at least 6 days per week. Three of those days is cardio strength training which fatigues my body to the point of exhaustion. It's never hard to sleep after that class. The odd days I do straight cardio. If I don't get exercise I don't sleep well and it's not for my pouch but more for my mind and stress levels. If you aren't engaged in fatiguing exercise, regularly, I would recommend it.

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


BetterHalf
Regular Member


Date Joined Oct 2009
Total Posts : 39
   Posted 11/10/2009 9:41 AM (GMT -6)   
Devin - Thanks for sharing your story! It was really interesting to hear how well you have handled the difficulties in your life - and come out on top!

My husband developed UC in January of 2008. On October 15th, he had his colon removed and will have the JPouch hooked up in three or four months.

You have given us some insight - and INSPIRATION!
Continued good luck to you!
Glenda

jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 11/10/2009 12:02 PM (GMT -6)   
Thank you so much for a great success story- so true that things will not be the same as pre- UC. I am 17 post reversal and dealing with some of inconveniences you mentioned. I have to keep reminding myself that things will get better-- patience is key. Overall, I am doing ok and started work today- albeit part time.

Thanks again.
Jackie, 44
Pancolitis, DX October 06
Lexapro, Synthroid, Protonix- NO MORE PRED!!!

Surgery March 13th- Total Colectomy
Jpouch surgery to be done in 3 steps
Step 2- June 23rd
Step 3- REVERSAL:::::: October 23rd -YEAH!


SocalJohn
Regular Member


Date Joined Oct 2008
Total Posts : 160
   Posted 11/11/2009 3:35 PM (GMT -6)   
Thank you so much for this. It gives me a lot to look forward too. I had the first of the three parter about 3 months ago now. Ive been back to work for a month. My J-Pouch creation is scheduled for Dec. 3rd. Then I need to recover before the final takedown surgery.

Its been a rough path. Ive had UC for over 10 years now. And I'm still fighting it even without my colon. They left my rectum in tact for the second surgery to be possible, and about 6 weeks ago the UC flared up in that small piece of intestine. I really cant wait for this next surgery because Im tired of living in pain. I was on pain meds for 6 months, and quit taking them after the first surgery. I had to go back on them though because of this flare up. Normal people will never know how terribly painful UC is.

Again Thank you so much. In 4 months or so, I should be able to post that Ive finished all my surgeries and am well on the way to a full recovery.

Wade457
Regular Member


Date Joined Dec 2008
Total Posts : 91
   Posted 11/11/2009 8:15 PM (GMT -6)   
It's been 2 years since my Ilo and I'm not in any hurry to get off the bag and use my J-Pouch. It's good to read someone else's experiences and thank you for sharing them.

I'm of the view that right now i'm stable and returned to most of my life prior to UC killing my bowel. The bag isn't the best alternative but it's a workable one. Having the reversal surgery seems to me that i'm trading the external bag for an internal one, as what gets dumped in the bag is what will be dumped in the J-Pouch. Not exactly toilet blocking substance.

I miss the days that I had to have a plunger by the toilet in order for it to work. Those were the days....

Pitz
Regular Member


Date Joined Jul 2007
Total Posts : 84
   Posted 11/11/2009 10:48 PM (GMT -6)   
Thanks for the info, Devin. I went into surgery this past June thinking that I would not be able to have a reversal due to a prior surgery I'd had and came out to learn it was still a possibilty. I had a follow-up today with my surgeon and he said everything looked good and it's up to me if and when I want to do it. I don't want to look back years down the road and think "What if?" I've been reading here and on C3life.com for awhile, and I'm going to ask my WOCN where I can attend a j-pouch support group. I want to get more information, both pro and con, before I decide. I hate living with the bag, but I can always go back to it if a reversal doesn't work out. Plus, if I can fit it in before the end of the year, I won't have to pay my deductible. smilewinkgrin

Ulcerative Pancolitis (dx'd 6/2002)
Colectomy w/ileostomy 6/2/09; iron infusions; Aranesp injection every week for anemia;
Remicade; Pentasa; 6-MP; Prednisone; Lialda; Asacol
various meds for other conditions


Sofee
Regular Member


Date Joined Sep 2009
Total Posts : 90
   Posted 11/13/2009 8:19 PM (GMT -6)   
Devin
It is really nice to get an insight on how other people [in Canada] are coping with these kind of diseases.
closer to home for me you are.
I am a Northern AB. chic and yes, I do know what its like going #2 in 4 feet of snow. Yikes!

I yern to tell you my story also; however its quite a long one.

I feel I can kinda connect with you on many levels... I am 33, & have had my j-pouch since '99.
I too was very happy & fairly healthy during these times. However, I now have Crohns - the disease came back. :o\

For me, I believe that the stresses of not being able to have children because of scare tissue from my surgery made the disease revisit me.
We went thru invetro and many many dollars later - came out with a lot of emotional scars. It was a very bad time for us.
All we wanted was to have a family. And still do.
We now have our fingers crossed for adoption - 1 1/2 yrs in.

It is amazing that you went that long with the ostomy. I had such a hard time with it. That yr. of my life was the worst ever.
I felt so auful and so degrating. Losing a relationship because of it probably didn't help matters.

I am glad that you are finding your way and things are going well for u!!
Enjoy life to the Max! Don't let anything stress you out!
Many thoughts & prayers!

Cindy
 
Sofee
praying for a good night's sleep and a happy bottom!! :o]
1998: Colitis - removal of colon, temp. ostomy 10 mths.
2000-07: disease free & doing well with j pouch.
2007-09: rectal pain & discomfort, loss of bowl control. diagnosed with Crohns March '09 currently on: Emtec, Azathioprine [Imarun] & Remicade. Med History: steroids, predizone, cipro, loperamide [imodium], gravol, previcid, cholestramine, xylocaine jelly, zinc oxide creme, etc.
 

New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, August 21, 2017 1:56 PM (GMT -6)
There are a total of 2,858,108 posts in 313,598 threads.
View Active Threads


Who's Online
This forum has 155200 registered members. Please welcome our newest member, JLChes.
443 Guest(s), 16 Registered Member(s) are currently online.  Details
mixolyd, Ihatepooping, Casa11, tickbite666, Ides, Purrrsiankitty, Michael_T, Mel B, Tom1, sanmay, Connor77, shoverdk, noodlesnoodles, Jinna, bewell1, iPoop


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2017 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer