My positive experience getting a j-pouch and some tips

I wanted to highlight the fact that getting a j-pouch can be a successful and very positive experience. When medication fails to work and your quality of life suffers surgery can be a huge relief. Sometimes reading topics on this board and the Ostomy board one would get a bad impression of a j-pouch because people write in to highlight their complications, fears and pain with their operation/ostomy/bag etc. I didn't find many positive experiences listed.

I had UC very badly since 2007 and had my colon taken out in May/09 and had 3 stage operation for my j-pouch which Ive been using since 25/2/2010. I am extremely happy with the results and I find it much better than living with Ulcerative Colitis. My surgeon had done the operation quite a few times before and there were very few complications. Some tips i found if you are thinking of getting a j-pouch to cure your UC:

• When you decide to go for surgery, before the surgery imagine what the stoma will look like sticking out of your abdomen. This avoids the shock/surprise when you wake up and see the little red mushroom sticking out of your belly.
  
  
• Accept that you've had surgery and there is no going back so put all your efforts into regaining your health and thinking positively. I found walking was great for recovering from surgery. It uses just the right muscles without straining the wrong ones.
  
  
• If you have laprascopic surgery the scars are not that bad, one 8cm one just above pubic bone, one 1cm one near belly button, one 1cm one to the left side of the abdomen and a 3 cm diameter hole where the stoma sticks out on the right abdominal area.
  
  
• If you have a 3 stage operation like i did, after the first stage you will have an end ileostomy which is easy to take care of. Output is quite thick and not acidy and the stoma is neat like the end of a hose. 2 piece pouches are easiest to use and the ones with the sticky seal to connect the bag to base are very good. bags are changed once every 1-2 days, bases changed once every 2-5 days.
  
  
• After the second surgery you have a loop ileostomy and its more diffcult to take care of so prepare for this. Its not a neat little hose, its like a flat bent hose sticking out of your abdomen. Its much more acidy and you might need a convex base plate to ensure the acid does not burn your skin too much. Bases changed once every 1-2 days and bags are changed daily.
  
  
• After the last operation when the stoma is closed, you will begin going to the toilet the old fashioned way. There is a lot of acid that will likely come out for the first week or so. Prepare for this by using Zinc barrier cream and wiping with flushable baby wipes.
  
  
• When using your j-pouch, its best to always eat something before drinking something. This slows down the liquid for digestion.
  
  
• Imodium is good for slowing down everything but tends to leave you bloated and a bit spaced out if you take too much. Imodium also greatly helps reduce the acid in a bowel movement.
  
  
• 5-6 small meals a day is better than 2-3 big meals. It reduces the j-pouch frequency.
  
  
• Take VSL#3 to help prevent pouchitis
  
  
• As regards urgency with a j-pouch, the longer you have your pouch the less urgency you feel. The first week there were some seriously strong feelings of urgency about 5 times a day, actually similar to the old UC days. This subsided after the week and it was a more normal feeling wanting to go to the toilet.
  
  
• You can hold in the j-pouch contents if you want for quite a while (>1hr) but I find the pouch keeps reminding you every few minutes for 5 seconds each time that it wants to go to be emptied. Just a strong feeling that you need to go to the toilet. The longer you hold the j-pouch the more water it absorbs so the urgency is not linearly related to the holding time. Actually i find the longer i hold it the less i feel i need to go.
  
  
• Passing gas is near impossible standing up when you have your j-pouch. But gas can be safely passed if you are on your back with hips slightly raised.
  
  
• You can resume normal eating and eat what you want without fear of triggering a flare-up when you have a j-pouch
  
  
• No on-going medications are required once you have your j-pouch
  
  

Thank you so much for the info...I love to hear positive stories regarding surgery...just in case one day I need to go that route.

rey said...
can the j pouch surgery be done in one step? I have heard that it can but have not researched it.
thnaks

Yes, it can be, if you don't have a history of prednisone use (I believe). My surgeon will not do a one step ever, though

I have recently gone through the J-Pouch process (2 steps) myself. I'm two weeks out from the closure of my ileostomy and have been having a hard time with the frequency of bms (even though I've practically starved myself) and the gas. OMG! I feel like I'm gonna rupture. I just don't get it. Any tips on trying to cut down on the gas or frequency out there? CLearly for me it's not a diet issue as I'm NOT eating raw fruits/veggies or dairy or other gas producing foods. I just don't get it. Help?

First, I would recommend you visit www.j-pouch.org There are over 6000 jpouchers on that site to offer you advice and support.

Where you are at with recovery is normal but there are things you can do to help. Are you taking fiber to bulk? Are you taking imodium or lomotil to slow things down? What is your diet like?

Not eating will make things a whole lot worse and lengthen your recovery.

Sue

Does anyone know what the age limit is for J-Pouch surgery? I just turned 48. With my luck, I will be able to manage my colitis medically just long enough to make me too old for j-pouch surgery.

I thought I read 50 was the limit, but perhaps that has changed? If not, the clock is ticking for me.

There is no age limit; the jpouch surgery has been performed on people in their 60s, 70s, and 80s. It's really determined by the health of the patient. People with multiple health problems may not be considered.
Sue

It is so great to hear positive stories...thank you. I am meeting with the surgeon tomorrow. And i am so scared and confused but know i will get through this. Thanks again!

If you were to fart while standing what would the outcome be? also how many times do you go per day?

Thanks for sharing this with us! How many times do you find yourself opening your bowels? Most people who've had the surgery state around 7-8 times.

I like the original post in this thread. It gets my seal of approval. :D

thanks to the original poster, wherever they are vacationing and living life -

it will be a cold day in hellville before anyone touches my innards with anything pointy, but it's awesome there are attractive alternatives for those who choose that route -

 

Thanks for posting this. I am scheduled for surgery in April and am petrified. It is good to hear the success stories. My recent colonoscopy showed very severe disease and damage in the rectum and part of the colon. The meds are just not working.