J pouch surgery

Hello, Startoverlife. 

I was in the same situation as you. UC for many years. No meds or flares, felt perfectly fine. Then a colonoscopy showed a suspicious spot. Pathology showed stage 1 cancer. Three months later I was in surgery number 1. After the colon was out and biopsied, it also showed early dysplasia. So I was very lucky I was having regularly scheduled colonoscopies. The first surgery went well and recovery was uneventful. I wasn't prepared for the back pain resulting from abdominal surgery. All the abdominal muscles have been cut and moved around and takes weeks to heal. During that time my back could not support me. I walked hunched over, couldn't straighten up. Eventually I did, but very worried my new life was to be hunch-backed. 

When you wake up from surgery your abdminal area will hurt like heck. If you try to get out of bed unassisted, you won't try it a second time. They will teach you how to roll out of bed with least pain possible. If they don't, ask. Also, as you wake up in hospital after surgery 1, when you sneeze, laugh, cough, hic-up or burp, your fresh incision will hurt like it's on FIRE.  So always have a hardcover book within your reach to press hard against your stomach to brace yourself. Pillows are too soft. And you will be told to cough often to get the mucus out of the lungs. They will also tell you to do deep breathing every hour. You'll be on morphine self-pump but the incision will burn regardless when you cough.

After your reversal surgery you might feel okay the first day or so, but as your bowels start to wake up (they won't feed or water you until you pass gas from your bum, a sign your intestines are awake and working), you will feel intense pain in your gut as gas moves through. I describe my pain as a brick being dragged through my intestines. No morphine or pain killer will manage this gas pain. Just try to live through it until gas pops out. Walk as much as possible (both surgeries). I also walked in the middle of the night, every hour. The gas should come out by day 2 or 3. Then they will give you a bit of soft food. I wish I had known to expect this gas pain because I thought something was desperately wrong. 

While in hospital after reversal and when you start to have BMs again, begin using your bidet squeeze bottle to clean your bottom after EVERY BM no matter how much or little stool or bile comes out. I didn't; I waited until the first sign of erosion and by then it was bad. An ounce of prevention. If you can, have an inexpensive hot and cold bidet (Amazon!) attached to your existing toilet. It will save the life of your bum and months of intense pain of your perianal skin. I never left the house without a packet of moist paper towels or baby wipes. Don't use toilet paper. It's like sandpaper on your bottom. Get smallest jars of various barrier cremes, calmoseptine, Zincofax, Balmex, until you find one works for you.

While you are wearing an ostomy bag, don't allow your stomach skin to become eroded or raw from leaks, and never leave stool on your skin. It will burn you. Use the samples you will get from all the ostomy companies out there. Call each company before your first surgery and they will throw samples (cremes, wafers, rings, sprays, powders, bags) at you to get you to buy theirs. Always carry at least one set of appliance supplies and baby wipes in a zip lock Baggie when you leave the house so that if you leak you can change it right away. 

Stock up on foods that will be soft and digestible (soluable foods). Stay away from nuts and seeds and raw, hard vegetables during surgery 1 and 2. I kept a bottle of water in every room so I would have no reason to be dehydrated. Since your surgery is in the summer months, be careful to drink lots of fluids and take in more salt than usual. If dehydrated have some canned soup, which is full of sodium. 

Your surgeon or gastroenterologist will want to keep an eye on you for a long time to come since you had cancer, so don't skip out appointments. I have endoscopy every 6 months under sedation. I'm glad they caught the cancer early. You'll be fine. 

Thank you winterberry for all of the information. It sounds like a very long and hard road ahead. I guess it's all worth it in the end. I hope it goes well and that I can get the hang of taking care of myself with all the possible complications after and pain. I really appreciate all the tips so i know what do do an expect.

You will be just fine. During recovery after first operation I never dared think where I might be in a year, or one week. But I can do almost anything now, except lift heavy things. I just finished gardening two hours in the sun and I garden like this every weekend and sometimes early evenings. I eat almost anything I like, but I do avoid nuts, seeds, raw vegetables, white sugary things, and anything with skin (I peel and cook it well). 

I've avoided all those types of food for a long time now anyway so that doesn't bother me. I deliver pizza right now. How long did it take until you could go back to work? Is it easier to hold it in if you need the bathroom? For quite a while I have maybe 30 seconds to a minute to find a bathroom most of the time unless I'm sitting. Then I can hold it a little longer. I also use to lift weights. Is that still possible later down the road? I know you said you don't lift heavy things.

I took a leave from work, but I felt comfortable working at 8 or 9 months. At 5 months or so after takedown I was able to hold on comfortably. But I still made sure I knew where the restrooms were, and always kept a packet of baby wipes or moist paper towels when out of the house. You won't have the terrible urgency of flaring UC, and you will have some warning, a feeling of slight pressure in the back end. Then you have to make your way to a restroom. I always listened to the warning sign and, unless I am far from a restroom, I never try to hold it in. To me, that is holding in bacteria in a new organ that was meant to hold and process nutrition, not stool. I get pouchitis from time to time so I don't like to hold for too long when I am well. At night after reversal you can expect leakage because your sphincter muscles relax when you are asleep. Don't be shocked or disappointed. It's normal. Sleep on lots of old white towels (easy to bleach in the wash) or a small waterproof mattress pad. Most members use Metamucil or Immodium. Buy a small size of each and see what works best for you. If you go back to lifting weights start with the lightest weight for a week or so. My surgeon said nothing over 10 pounds immediately after surgery.

I wish I could take a leave from work. I'll have to figure that part out. I have been trying to save some while I'm able to work with being on prednisone but it's not much. I need to be back making some money by the 4 to 6 week after the first surgery. Then maybe I can save more before the second one. I have developed small holes around my anus as well so I hope those will be taken care of and heal up properly in that time as well. I have had times when I went to the hospital where I would use the shower head to clean myself because wiping was unbearable. It was like passing razor blades so I understand. Even with the bag I can't wait to be able to just go relax at the park or down by the river and watch the sunset without needing a bathroom. I don't think many people understand the life you live with UC when you have it for so long. I have some small dumbbells at home so maybe I can start very small and it will also give my body the exercise it needs along with going for walks with my dog.