started bleeding again pretty bad.. starting the Rowasa enemas again tonight. I see Remzi for first time on Monday to discuss my issues. If this diversion pouchitis becomes chronic i may need this troubled jpouch removed. Dont have time money or patience for that at all. I'm having anxiety issues now.
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sorry poucho. been there done that. Be diligent on those rowasas. even twice a day. It may help keep things at bay for you.
also did you try the SCFA ones before rowasaS?
I hope you've stopped bleeding and your appointment brings you good options. I know what you mean about money, time and patience. I'm ready for them to throw me in the hospital and do whatever needed to get rid of my chronic pain and poorly functioning j-pouch. If I have to go to an ileostomy I'm hoping that they can just leave the pouch in for now. I'm afraid.
Good Luck!
Pouchomarx, I just saw Remzi in April bc of a failed pouch. I saw him on a Monday and was scheduled for an ileostomy on Friday. Best day of my life. I Woke up in no pain and had a great surgery experience. My actual surgeon was Stocchi. He was amazing. I return in September to discuss removing the pouch as he refused to do both surgeries in one before bc my health was so poor when I finally got there.
Good of luck with the appt. I hope they are able to help you as much as the did me. It's a 12 hour drive for me and I would gladly do it over.
Please post to update us.
Starry,
Why do you feel you need to have the whole pouch removed at this point? And why did you get diverted? What happened? Mine went bad fast as well. I'm just diverted. Why would I need to consider removing it? Gosh, I'm having a hard time recovering from just being diverted I can't imagine going thru another big scary surgery.
I do the Rowasa only before bed and after 3 days bleeding stops and i quit the rowasa. I had consult with Remzi today. I think he talked me into having a redo. Hes so confident, yet not cocky or arrogant. He held nothing back and to the point . he said 90% chance he can give me a great working new pouch. He really seems like he cares and said I am too young (44) to live rest of my life with a bag. And i have spent so much time and mental anguish over this pouch that has a leak and a sinus. If I do decide to do it, I'm hoping mid October if Remzi can do it that soon. Better yet, My medical is paid 100% till end of year..
I'm happy he can help you. Yes, you r young. You will be fine. ps what is this diversary colitis? What r the symptoms? Im afraid I might have it or I never got rid of the pouchitis that caused my misery aka diversion recently.
HI Poucho,
I am interested in your diversion pouchitis, I think I now have it. I have had my pouch disconnected for 5 years with no problems but have just started feeling like I have UC all over again - pain, discharge, some bleeding, feel like rectum wants to prolapse, urgency etc.
How long did you persist with it before your recent surgery? I hope that went well for you.
Did the Rowasa enemas help?
I was diverted back to an ileostomy over a year and a half ago due to a jpouch leak. The only symptom i had with the diversion pouchitis was alot of bleeding. Dr Shen went up with a scope and sprayed pouch with dextrose and plugged it up with a tampon, yes a tampon..lol. after two days bleeding stopped completely. A month or so afterwards i started to notice a little blood again, and i did the Rowasa enemas before bed for 3 days and it was all better
Pouch, hope you are feeling a little bit better. Jeff has diversionary pouchitis as well. If he has any symptoms, I have no idea what they are. Come to think of it, he did have a little bit of bleeding. But other than that has been doing ok.
knock on wood the diversion pouchitis has not been an issue. I will be having my redo/revision on October 19th with Dr Remzi at the Cleveland Clinic. I remember when i had my pouch initially i dealt with cuffitis but Canasa cleard it up and minor pouchitis at some point but i took Entocort for several months and it went away. I never really did the antibiotic thing. I have a very nice pouch, it just has this damn leak and a sinus as well. lol
