Skip to main content

Reply to "J Pouch Removal stories"

I had my j pouch removed after a 30 year run on December 6. The surgery took 6 hours, alot of scar tissue to dig through. I felt great, no pain, didn't use the pca pump more than 12 times in 24 hrs so I asked for it to be discontinued. I was home in 4 days and only took one percocet a day for a week then stopped as it was not needed. The biggest issue I have is allergy to almost all the ostomy systems and products. My stoma is lopsided and is leaking under the barrier rings and or flange/wafers causing multiple appliance changes and excoriated skin. I know I need a revision, I cannot live with this stoma as it is. My surgeon says NO. I find it unacceptable that after 30 years of doing these surgeries a dr can't make a decent stoma and it is more than one Dr who has these results not caring one bit about the patient's quality of life being adversely affected. I am looking for a local surgeon who will be sympathetic and do a revision sooner than later. I am 5 weeks post op and very weak, not gaining weight, I lost 6 pounds since surgery, I am 96 lbs, 5'6". The convex appliances hurt my stomach which is still very bruised, not swollen. This makes movement very difficult. I am staying in bed more than I want to but I am not sure if I am expecting too much. I do what I can but then I am exhausted, empty a dishwasher, shower, wash and dry my hair, start a load of laundry, simple meal prep for myself, it all wears me out. I had to go to the lab and nearly passed out there. If I leave the house it has to be under an hour and I need to remember to take snacks and gatorade. I had similar issues with my last temp ostomy 2 years ago, revision was done in less than a month die to retracted stoma. I know I will eventually improve but at 66 it is getting more difficult to bounce back.  I can't imagine going to any job after 2-3 weeks. This recovery could take months and up to a year. My first ostomy did 30 years ago and I was only 33. I have never come across a Dr who is truthful about the recovery time. I realize we are all different and I hope others have better recovery experiences because at the moment I would say this is not quality of life. I don't believe in sugar coating what might be. Not meant to scare anyone considering this but go in with eyes wide opened because we all have different outcomes. Stoma nurses, once known as Enterostomal therapy nurses no longer have the same training, they are grouped under wound care and WOC nurses are certified with little training in stoma care. It is like the blind leading the blind since I know more than 6 nurses who I saw since my surgery. Hospitals and nurses also use the worst products, good products cost too much. Coloplast is by far the best. Better filters, nicer pouches, no gas blowup. I sleep through the night 5-6 hours. I use a peri bottle to clean the pouch which is much better than just wiping with tissue paper. I am emptying ever 2-3 hours because the weight of the pouch pulls. It also depends on which pouch I have on, I am at the mercy of samples at the moment until my medicare resolves the quantity issues, I purchased and returned several boxes trial and error trying to find the one that feels good and meets my criteria. One day I changed 28 times in 24 hours due to leaks, no one told me to use convex and flat appliances were not working as they did with my last stoma. I am hoping now a convex trio silicone barrier ring will allow me to revert to flat appliances. Next change I will know if it works. I don't do the crusting technique since  I am allergic to all prep products, I do use a bit of powder to absorb moisture. Sooner or later I hope to have a better stoma and a better quality of life. I am not patient but I have no choice at the moment. I hope my experience helps others figure out what is best and that there are options in products that some nurses and drs will not tell you about.

Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×