First of 2 jpouch surgeries coming up

There is so much to tell, i am not sure where to start.

some general thoughts:

1. understand your surgical consent form.  you should be well prepared for the unexpected.

2. did you discuss the post surgery pain management with the surgeon. Dilaudid and i became best friends

3. did you find out where they will place the stoma.  When you meet with the stoma nurse, she will train you on the appliances.  Depending on your body type, the barrier paste might not well, and you will need to use a barrier ring.  many of us find the loop ileostomy to be a very challenging experience.

4.  a soft/white diet worked for me in the early days post surgery.

Read, read, read as much as you can from this site.  You will learn alot.

Unfortunately, I don’t have a stoma nurse. My last appointment with the surgeon said she may do it higher up because the pants I was wearing were midrise. I do not meet with anyone else prior to the surgery. She explained the procedure but we did not talk pain meds. From the videos I have watched, many were on Dilaudid. They favored that over morphine. Thank you

I also had colon cancer after UC and I wish I hadn't had my whole colon taken out, but instead, just the tumor.  The UC wasn't bad.  Living without a colon has been a challenge.  So many deficiencies.  It really throws the body off to have an organ missing.  I don't recommend it.

Hi,

I honestly don’t remember a lot about post surgery. It was a long time ago. And I was pretty sick. I wish I had known about this forum though!

I don’t remember having a lot of pain. I do remember the Ostomy bag being a nuisance. The adhesive irritated my skin. I did have someone come to educate me about the stoma in the hospital. Also, a home healthcare nurse came a few times to my home. One night I woke up after having eaten broccoli and the ostomy bag was blown up like a ballon!! Hahaha too much fiber.

As much as my pouch can be troublesome, I would rather deal with it than an Ostomy bag.

I wish you all the best! Come back here often, there is tons of info.

For me it was all about the pain management after the operation.  If you don't figure that out you will be miserable.  I was told long after my first surgery that I should never be over 4/10 in my level of pain, so the second surgery was much easier to deal with.  Contact your surgeon as soon as possible after the op if you're having to deal with too much pain and don't give in till they fix it. 

My surgery was laparoscopic and I did not have a huge issue with pain following.  The loop  ileostomy took an little adjusting to.   I expect you'll meet with an ostomy nurse in the hospital and they'll have you practice changing the appliance before discharge.   My nurse showed me the equipment and ordered it for me in advance of the procedure so it was waiting for me at home.  Appliances come in different styles and sizes, and your stoma will shrink over the first several weeks, so the apparatus size will change.  It's good to have someone to guide you during this period  as to proper fit and to monitor your skin.

As for diet, ideally you'd consult with a dietician after the surgery, especially after the takedown.  Generally, you will find some medical centers publish guidelines for ostomy diet after surgery if you search.   Recommendations include chewing your food very well, avoiding fiber for the first several weeks, smaller, more frequent meals, and staying very well hydrated.   Certain foods will slow output - bananas, applesauce, rice. I was encouraged to make my own protein shakes - protein being important in healing  

Between surgery 1 and surgery 2 you will likely pass mucus through the anus.  This is not something that all patients are warned about. I am glad my ostomy nurse mentioned it - no doubt it would have freaked me out a bit otherwise.  

I had UC for many years and had a pretty useless colon by the time high grade dysplasia was found, and the colon was removed.  I felt much better once it was out, no cancer was found, and I was no longer very worried about having colon cancer.   People think the temporary ostomy is a lot to adjust to, but  I got used to it by the time of the take-down in 3-4 months.  The connected J-pouch was a much harder adjustment over a few years. It's not perfect, rather it's a trade-off.

Whatever issues you encounter on the journey, using the search function on this site will help you learn from others, and people are tremendously knowledgeable and generous in responding to posts.

Good luck.