first step of surgery for Jpouch completed, two weeks into recovery

Pan Ulcerative colitis cause d me to loose most of my life. But then my colon turned more sinister, changing like a small tropical depression into a hurricane. 9 years of Remicade and then 9 months of Entyvio had shown gradual decline in my colon lining. Polyps removed after every six months of colonoscopies finally revealed the truth- high dysplasia was occurring and I needed my colon removed ASAP.

Problem with surgery is more mental than physical. I went to Ostomy meetings on my own. The gifted surgeon I had employed told me all would be well, yet that does not prepare you. The thought of having a hole in my side was so beyond my point of acceptance. Vanity? Sure, aren't we all. It was the powerlessness that I feared as I had spent years building myself up with a suit of muscle armor to protect myself- in reality a defense mechanism of being internally a rusted out, mess.

10 days out of the surgery, I talked to ostomy wearers. I asked to just look at it, so I could visualize the change. The best suggestion was made to me- wear a dummy appliance ( the bag) for the final week. Brilliant. I put it on and in a few days was used to it. Sure it was make believe. But it gave my a final dry run. Anxiety attacks were still happening to me and I notified the surgeon of them.

Surgery day- i arrived at the hospital on 1 mg of Xanax. The surgeon told me to do this. I checked in and went to prep. The beeping sounds, brightness of the room as I was wheeled in started to overwhelm me. They give me an injection to lessen my anxiety. Then another bombshell- I was too large at 260 pounds for possible 2 step surgery. Might need a third. ***?

I awake, you just hear sounds first, the endless beeping of monitors. I remember being wheeled into my room. You have no real recollections. All I knew was that the morphine was wrecking havoc with my ability to control my emotions. A swithch to Diluad removed this.

For 5 days, you walk the halls. The Foley catheter was in me, draining my urine. It does not even feel like you are wearing it. They then deflate it after a few days and pulled it out. I was nervous about it hurting, but it was just a quick annoyance. My bag did not fill that frequently as you are not really eating, nor was I hungry. Pain is self managed by pressing your green glowing button every 10 minutes.

Home. After 5 days, I came home. I thought I would be stronger, but you can not walk very far. The problem of being at home is managing your ostomy. Nothing but problems for me as I have had to have the home health nurses come out and help me every day with fitting issues and leaking.

Summary= I am still adapting. If you go through with surgery, prepare yourself. Do not let other medical people tell you " you will adapt, it's not tooo bad, etc" That was not specific enough. Tell your doctor that you want to talk with in person an Ostomy nurse.
Demand to know who will be doing your HOME health. They must know ostomy issues or else they are worthless. Ask what to do if you get a leak at home.

Thank you both for very informative posts. I'd love to hear from others who have been through surgery.

NSSG-I laughed when I read what you wrote about losing weight! I'm facing surgery for low-grade dysplasia and it helps me to think about how it'll help me lose the extra weight I've been carrying around since my son was born. Hey, there's always an upside. 😀

Does the surgeon put you in touch with an ostomy nurse to meet with before surgery or would I initiate it myself?

kiptyn said...
Thank you both for very informative posts. I'd love to hear from others who have been through surgery.

NSSG-I laughed when I read what you wrote about losing weight! I'm facing surgery for low-grade dysplasia and it helps me to think about how it'll help me lose the extra weight I've been carrying around since my son was born. Hey, there's always an upside. 😀

Does the surgeon put you in touch with an ostomy nurse to meet with before surgery or would I initiate it myself?

Mine did. I met her beforehand and she answered a lot of questions. I saw her again in the hospital where she helped with my first pouch change. As I said, it wasn't too helpful because I didn't learn much, just watched. It did accomplish the goal but i needed to do it on my own to really feel comfortable. It seems a lot more complicated than it is, you just place a sticker and place a pouch. You can do it as littlle or as often as you want. I've heard of people changing every day and others who change once a week - depends on what you like and your insurance, some insurance only covers enough products for less frequent changes. I didn't see my ostomy nurse after the hospital stay.

john, you're not allowed to complain anymore (jk), 2 step is so much easier and quicker than 3. You're going to be over and done with all of this before me and you started long after. I personally would be thankful to be in your shoes.

I lost about 30 lbs after my 2nd surgery; I had a loop ileo and everything just went right through me. Loops are tough to manage but they are only temporary. Loops are necessary after they build the j-pouch (2nd step of a 3-step), end Ileos are built after the colectomy (1st step of a 3-step).

I had a great ostomy nurse at the hospital, she was so confident and upbeat that it couldn't but rub off on me a little bit about my ostomy plus I felt so much better after my colon was removed. I also had a great home nurse who was very familiar with ostomies.

No matter how much help you have it is still terrifying the first couple of times changing the ostomy all by yourself. After about 3 solo changes things were pretty easy for me.

There are so very knowledgeable people on the Ostomy board. Your Ostomy supply provider has support lines staffed by ostomy nurses if you need help. Also ask for samples from the Supply manufacture, find products that you like and practice on them. I preferred Coloplast products over Holster.

I hope your recovery goes well. Thanks for sharing.

ks1905 said...

notsosicklygirl said...

john, you're not allowed to complain anymore (jk), 2 step is so much easier and quicker than 3. You're going to be over and done with all of this before me and you started long after. I personally would be thankful to be in your shoes.

John, was your J-pouch built during this recent surgery? Or was it just the colectomy? Looking back at my surgeries I am very happy that I had a 3-step since I was so sick at the time that it would have been very tough to have a 2-step since my 2nd step (j-pouch creation) kicked my butt.

Nope, mine was not. I am definitely not happy to have 3 steps. I would have loved to be going for the reconnect instead of going for step 2. It's a downer.