J-pouch being created October 3rd!

Hi guys and gals,

I’m crossing my fingers that my intestine is healthy enough to have the first step of the j-pouch surgery which is scheduled for Pctober 3! 

Please share any pre-op or post op advice and/or suggestions that you have to make my life easier

Please and thank you. 

Original Post

Congrats! I remember taking the pain medication regularly bc it hurt! So take it easy and don’t be afraid to do that. Take it easy on the food too- keep it simple and plain at first. Will you be able to get an ostomy nurse to come and visit you after you’re discharged? That was helpful in terms of changing my bag and getting confident to do it myself, while the nurse was there as back up. 

I used to eat a few large marshmallow to stop the output about 15 min before I changed my bag. That helped a lot so I wasn’t having output while I was trying to change the bag. 

i ordered some of those blanket pad things - the ones they put under you if you’re in the hospital, or that you’d put under someone so if their incontinent it’s easier to clean up. I put that under me while I slept (actually I think that was after my takedown, come to think of it). When I had my bag, i mostly slept on my bag, but I put a towel under my beg between the bag and my body, so if it did leak, and it did, it would catch it. 

You may also want to ask for paste strip- I used Coloplast paste - that’s this playable paste (almost like putty) that I was able to use as a barrier or a dam-like so it made a good deal. My stoma was kinda close to my belly button, and the curve made it hard to seal. The paste helped a lot. 

Cant remember much else in terms of advice. Other than it’s okay to be sad and mourn your loss (of your colon). It’s def not an easy surgery and you’ll have good and bad days. It’s okay to be like- this sucks! But it will get better!! You’ve got this! 🙌🏽

I’ve had a ostomy bag for 3 years+. So all that I’m aware of, but now I’m fixing a hernia while have the jpouch created internally and then 3-4 months later my reconnection with my new j pouch. Wasn’t sure what to expect after having the j pouch created but still having my current bag? 

First of all good luck wishing you a speedy recovery.  I did the three step program lol.

I found my second operation creating the pouch the most difficult to recover from. My first operation proctocolectomy ( removal of my colon ) wasn't that tough. 

The second operation was a extremely long one close to 7 hours, that will definitely take a toll on your health. I started to experience a lot of back door pressure.  They went in through my incision just below my stoma and also my back door. The most difficult part was just getting around the first few weeks and I had very little energy.  Walking tired me after 10-15 mins it took me close to a month to start feeling a bit better.   I was on pain meds for about 5 weeks.  

I have only had my J pouch for a month now, still getting used to everything.  The butt burn is the worst.  I  now support all types of baby rash cream, still trying to find something that really works. Overall very happy I did it.  It was a difficult 9 months but well worth it.

 

Let us know on here how it goes, good luck again. 

 

NickP, be prepared for continued mucus discharge after your pouch is created. For me, the discharge increased significantly a few weeks after the surgery. No blood or pain, just difficult to manage and I was forced to wear a pad 24/7. Mostly just annoying. BTW, the healthier you are, the better your recovery. Walk a little daily and eat lots of protein to help tissue heal.

I had  a 2-step and its been almost 2 months with my takedown. J-pouch is really great . Expect some mucus from your bottom . Start doing kegels and all sphincter muscle exercises if you havent been doing. Eat healthy foods . Stay away from junk and spicy for few weeks . Its all good and gets better after the surgery. Good luck 👍.

I had step one of two step surgery about a month ago. Getting used to the bag and caring for the Peri-stoma skin was one of the biggest challenges but since you already have one that won’t be a problem for you. I had a hard time right after surgery getting my small intestines to wake up. I think I was put on solids too soon (next day) and it created problems. I walked a lot in the hospital and I think that helped. Good luck!

valli posted:

First of all good luck wishing you a speedy recovery.  I did the three step program lol.

I found my second operation creating the pouch the most difficult to recover from. My first operation proctocolectomy ( removal of my colon ) wasn't that tough. 

The second operation was a extremely long one close to 7 hours, that will definitely take a toll on your health. I started to experience a lot of back door pressure.  They went in through my incision just below my stoma and also my back door. The most difficult part was just getting around the first few weeks and I had very little energy.  Walking tired me after 10-15 mins it took me close to a month to start feeling a bit better.   I was on pain meds for about 5 weeks.  

I have only had my J pouch for a month now, still getting used to everything.  The butt burn is the worst.  I  now support all types of baby rash cream, still trying to find something that really works. Overall very happy I did it.  It was a difficult 9 months but well worth it.

 

Let us know on here how it goes, good luck again. 

 

I never experienced butt burn and been nearly 4 yrs since takedown.

However, whilst awaiting takedown, I experienced excruciating skin errosion around my stoma, which was alleviated within days  by the application of ilex Protectant Paste, which I continued to apply around my stoma as a precaution until takedown, as it acts as a barrier.

Prior to applying ilex, I tried every cream, powder, potion and concoction to no avail.

ilex Paste can also be used to alleviate and prevent butt burn 

It's beneficial to have ilex Paste and not need it, rather than need it and not have it.

In my opinion, ilex is by far the best and a necessity.

strange posted:
valli posted:

First of all good luck wishing you a speedy recovery.  I did the three step program lol.

I found my second operation creating the pouch the most difficult to recover from. My first operation proctocolectomy ( removal of my colon ) wasn't that tough. 

The second operation was a extremely long one close to 7 hours, that will definitely take a toll on your health. I started to experience a lot of back door pressure.  They went in through my incision just below my stoma and also my back door. The most difficult part was just getting around the first few weeks and I had very little energy.  Walking tired me after 10-15 mins it took me close to a month to start feeling a bit better.   I was on pain meds for about 5 weeks.  

I have only had my J pouch for a month now, still getting used to everything.  The butt burn is the worst.  I  now support all types of baby rash cream, still trying to find something that really works. Overall very happy I did it.  It was a difficult 9 months but well worth it.

 

Let us know on here how it goes, good luck again. 

 

I never experienced butt burn and been nearly 4 yrs since takedown.

However, whilst awaiting takedown, I experienced excruciating skin errosion around my stoma, which was alleviated within days  by the application of ilex Protectant Paste, which I continued to apply around my stoma as a precaution until takedown, as it acts as a barrier.

Prior to applying ilex, I tried every cream, powder, potion and concoction to no avail.

ilex Paste can also be used to alleviate and prevent butt burn 

It's beneficial to have ilex Paste and not need it, rather than need it and not have it.

In my opinion, ilex is by far the best and a necessity.

Regarding ilex cream where is the best place to purchase it from.  I looked it up and Walmart sells it for 21.99.  Trying to locate it in Canada.  But even 21.99 is expensive then add exchange on and its going to cost me $27-28 for a 2 once tube.  Which I fear will not last me long since I am going up to 20 times a day. Thank you guys for the suggestion. 

NickP posted:

Hi guys and gals,

I’m crossing my fingers that my intestine is healthy enough to have the first step of the j-pouch surgery which is scheduled for Pctober 3! 

Please share any pre-op or post op advice and/or suggestions that you have to make my life easier

Please and thank you. 

I am sure that you will be fine!  My intestines were in very bad shape I ended up having a perforated colon with many ulcers in my large intestines.  As bad as my intestines were I got to have my j pouch about a year later in 1994.  The things that stick out in my mind the most is to make sure once your j pouch is connected and things starting flowing through is to make sure you have a good barrier of paste around your rectum, because your but will burn if you do not.  Do not go crazy on food no matter what your doctor says, I would take it easy on what you eat.  I would start out with soft foods for awhile and stay away from food that causes gas.  Dont drink anything with carbonation at first at least until you can see how it is tolerated.  I still barely drink anything with carbonation.  Drink plenty of water, use that paste and dont go crazy on food!   Good luck to you...will say a prayer for you!

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