Upcoming J-pouch surgery

I had my surgery at Baylor in Fort Worth 3 years ago. 

Nothing else to really  add.  Sorry. 

Richard. 

Hello, Miketexas and Mrs. 

It's harder for the family member(s) who have to watch someone go through this big surgery. There's no getting around the fact that it is a major operation. Accept that and know that thousands of people go through this and come out the other side with a functioning j pouch, although some have to manage with pouchitis or other side issues. Accept that there will be pain during recovery, especially learning to get out of bed: scoot carefully over to the side of the bed, roll gently onto your side, use your arms to push yourself into a seated position. Better yet, ask your wife to bend her arm and you grab on and she pulls you into sitting position. All my family members took turns winching me out of bed or off the sofa. They were amused, but it was helpful.

Read up on the surgery, how to manage issues afterward, what you need to have on hand (mattress pads or old towels, water bottles in every room so you always remember to hydrate, a tube of barrier cream, and a squirt bottle or bidet attachment that will save your butt!), the types of food to have in stock because your diet will be different for a few weeks or months (to thicken stool). Having knowledge makes you tough, it lets you stomp at fear and anxiety and tell it to get the hell lost. It's okay and normal to be afraid and have worrying thoughts about the unknown, especially while you wait those long hours during the surgery. But try not to dwell on it too long. Dwelling on it makes you freeze up, immobilizes you, and you can't act or think. If something frightens you, learn everything you can about it so you have some control over it, and you are ready for almost anything that pops up. Get to know your surgeon so you feel comfortable with him/ her. You'll have a pre-admission meeting with the nurses and anesthesiologist, so go with your list of questions and concerns, and take notes too.

Plan ahead: make batches of favourite and nutritious dishes and freeze in small containers so you can reheat when no one wants to cook. Be the patient's advocate and ask the nursing team or surgeon for help when he needs it. Before long, in a couple of weeks, the patient will walk straight and tall again and hopefully have a normal functioning j pouch for life and if there are issues you will have read up on that and be prepared.  Everything does get better as the days and weeks go by. Plan something fun for spring and look forward to it. Good luck to both of you. Enjoy the holidays and let February 8 roll in gently.

Can you be a bit more specific about your wife's worries? Are they about the risks of serious complications, difficulty adapting, or what?

Without really knowing what her concerns are, here is what I told my husband when he was concerned I might be getting in over my head:

"I am more than ready for this and I have full faith and trust in my surgeon. Whatever complications may arise, I'll deal with them; the same as I have with UC most of my life." 

Jan

I guess we are all different when it comes to pain, fear, surgery, illness, loved ones...

I act like a trooper...head held high, efficient, bags packed, house cleaned, laundry done and ironed, all meds pre-ordered and stocked, sheets changed and clean at home (really hard to change sheets post op), floor vacuumed etc...my cupboards are all stocked with soups and rice etc...blue pads, garbage bags and spray bottles in stocked in the bathroom, air freshener, soft wipes and disinfectant wipes to clean up messes...and a heating pad and warm socks everywhere I went.

Mashed potatoes were my best friend, I would melt in some grated cheese (gave me salt) or a can of tuna into them, or just throw a potato into the microwave for 8 minutes and add olive oil and salt..Very pouch friendly when you don't feel like eating.

I kept everything at counter height so I didn't have to bend to pick stuff up...

Hubby would be permanently angry or teary eyed. He would be terrified and it would come out as being short with me or fussy...I couldn't reassure him or calm him down...he was out of his mind in fear.  It was just his way. He panics when I am sick...I learned to accept that he is not good at being the one who waits...I love him anyway. 

When it was my turn to be in the waiting room I made plans for 'us' and the 'after'...I was a wreck but it was pointless to show it...he made a great patient...never once complained...I was the Bi-ch...who-d-a-thunk? 

Just remember to keep everyone and everything organized and on speed dial...pharmacy, grocery store, local home nurse...keep visits to a limit of 2...at a time...you want the company but need the rest...have them bring useful stuff or do errands for you before they arrive...nothing wrong with asking for help when you need it...

Have happy holidays and good luck

Sharon

Ps...this too shall come to pass

I had my first surgery in August and the 2nd just 3 weeks ago... Its amazing how much better you will feel especially after the first surgery and the diseased colon is removed! Its never fun to sign up for a 3 part surgery but its very doable, I promise.

I had my first surgery in August (the subtotal colectomy was an emergency surgery- not planned, I was in adrenal failure trying to taper off steroids) and then there was actually a "kink" in my small intestine, so after 3 emergency room stays for extreme bowel obstructions I had a "revision" surgery in September to remove the twist so I had a working ostomy... I say that not to scare you but to share a kind of "worst case"scenario and it was still totally doable. And I just had the 2nd surgery 3 weeks ago and I am off all pain meds and doing good! Tired but good.

I will say I think its a lot on the caregivers, I am divorced and live alone, so my mom stayed with me for 2 months after the August surgery (because of the ongoing ER stays and 2nd surgery). She actually only stayed 2 weeks after the second surgery, so it gets easier! She did a lot for me, and your wife needs to lock in beforehand her own back up crew of caregivers so it isn't all on her... but there are ways to make it easier on your wife and you:

-Sign up for visiting nurse service (free) is a huge help to have someone come to the house and check in and make sure all is going well 

-making a chart of what meds you take and when (once you are out of the hospital) is really helpful so your wife doesn't have to remember everything! If you want to, add in foods there as well and you will quickly learn what works for you and what doesn't.

-The main way my caregiver helped me was with getting used to the ostomy bag and helping me change them, etc, until I was able to get a hang of it and do it myself, as well as a lot of laundry (I had a fair amount of accidents at first when getting using to my ostomy bagging system) and making food for me.

-use amazon prime and every type of delivery service you can!

Best of luck and know you are doing the right thing having these surgeries and life will be easier for you and your wife in the long run!

I broke up with my ex fiancée because she refused to support my decision on having the surgery (luckily I had amazing siblings and parents to support me).

Just let your wife know that you really want to do this surgery.  It is one of the most important decisions of your life.  The recovery for the surgery goes a lot smoother if your closest loved ones are there for you during this process.

I told my ex fiancée all this but she stayed stubborn and kept telling me to not have the surgery.  So I left her. I was in way too much physical pain and the meds weren't working, so I felt like I needed the surgery.

When you say you've had an ileo for two years and wonder why you didn't do it sooner, it was an interesting thing to say.  You sound like a very positive and optimistic person and your wife is worrying "for" you it sounds like.  To put her at ease, let her know that you will be honest with her.  My bet is that she's nervous you will put up with stuff and not share with her with you're not happy, or in pain, etc.  Did I get this one right?