Dear all,
My pouch was good for almost 19 years, though the last few years I noticed the need to start putting pressure in order to empty, which caused swollen hémorroïdes internal and external. And also twice flebitis in my right leg, none of the doctors would recognise the link between putting pressure to evacuate the jpouch and swollen uncomfortable veins in the leg. I was told to drink a little amount of olive oil (2 table spoons) on empty stomach which did help then I started having to deal with strictures which were surgically dilated 3 times but although I use daily a dilator, it still feels like the opening is continuing to tighten up. So I was told to use a Medina catheter and a water enema which are really helping to empty the pouch and the hémorroïdes seem to be less of a problem, so the discomfort in the leg. I find the dilator uncomfortable but am determined to use it as otherwise I would have to revert to a permanent stoma. The pain you all have described is just what I have had before discovering the catheter and water enema. I also panic at the idea of going through again another major op so I am trying to help myself as much as possible. One thing that cause a lot of pain because of the stricture is eating something which is not easily digested or chewed enough which can cause a painful partial blocage then with the help of liquid diet for a day or so and the catheter I have been solving the painful episodes. Unfortunately I have a good appetite and enjoy healthy food with plenty of vegetables which are becoming a problem, I can make soups but loved and missed how I used to be able to eat. Now I need to be super careful. On days where I have eaten the right things I empty the pouch with enema (once) and catheter(twice) after each meal and feel good in between. My problem is definitely not pouchitis as most doctors were assuming at first but a functional one, so the stricture and a slightly out of best position of my pouch exit! I need to twist and turn the catheter and enema tip to find the entry!!!
Sorry I wrote such a long message but hopefully it can help someone, we all have different issues and problems. Wishing all a much better 2021
Patrizia