I just got my surgery time for the jpouch removal - Monday morning, 10/29 at 9 am-(ish), Cleveland Clinic.  Feeling anxious , for the surgery and especially the recovery, but so looking forward to it being over with.  My jpouch has been disconnected for a year now, but with the abscesses and fistulas and inflammation and and and, my surgeon said it was time to come out.  It's 25 years old so I'm totally OK with that, and doing fine with my stoma.  I'll try to keep this updated for those of you who might be going through this as well.  Wish me luck, see you on the other side ...

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Thank you everybody!  I appreciate all your positive notes of encouragement.  My surgeon is Dr. Tracy Hull at Cleveland, I've been seeing her for going on 7 yrs.  They have me drinking "Impact" 3 times/day for the last week.  It's an "advanced recovery immunonutrition drink", and I'll be on it for a few weeks afterwards as well.   They've also encouraged exercising, such as walking for preparation.   Pre-ops were all good, except for my hereditary, Factor XII deficiency which is really only an issue in the test tube and not in real life situations.   So, on paper, it looks like things are so-far-so-good.  

TE Marie, thanks for thinking of me.  I had the surgery Mon. morning, and was out Friday afternoon.  It went fairly well, although complicated by low blood pressure (normal for me) which cascaded into an AFIB situation, which sent me to ICU for a 1/2 day. 

My stoma was revised, unexpectedly, due to kinking underneath.  I'm OK with that so far, as the new one is round and should be easier to work with.  Surgeon was able to "scoop" out the shell of the big abscess, so that's gone.  The fistulas are still draining a bit - she stitched the backside muscles inside, and left the skin open for drainage.  Not much is coming out at all.  They took an ovary and tube out as everything was too stuck to mess around with for any length of time, and I am fine with that.  I currently still have my staples and a JP drain, they're coming out on Friday.   

Pain levels are pretty outrageous in the abdominal area, especially when up and about.  The backside isn't as bad as I expected, but bad enough.  But it is really early and I know from all your advice and others, that it's going to be a long haul.  This surgery is definitely not for the faint of heart.

I got a picture of the excised pouch - the pouch itself was actually not in bad shape, but the cuff was totally ulcerated and messed up - that's where the fistulas/abscesses arose from.  I'm willing to share the picture if anybody wants a look-see at an excised pouch!

I can provide more detailed information for anybody considering going through this as well, just let me know.  I'll also update how the recovery goes. 

 

Wow, you got a picture of it!  The pathology report on my excised j-pouch, after 6 months of being diverted, still showed the UC (Cuffitis) and Pouchitis.  I need to tell Mayo's that CC takes pictures for their patients so they need to up their game 

My ileo was changed the second time too and it sticks out further, which is good.

Sorry you are having so much pain. I was on narcotics for that so that is probably why I didn't think it was that bad.  It's great that your backside isn't in too much pain.  I imagine it's no fun with the drain. Will they stitch you up after everything quits draining?

I had them remove my ovaries when my colon removed.  I was already without a uterus and due to menapause they weren't working anymore. They were "narly" and had cysts according to the resident so it was a good thing I got rid of them. Missing some body parts we no longer need - like our appendix too saves us potential future worries.

Take care

Got home 2 days ago, a 10 day stay.  Nausea, cramping, inability to eat were the main issues.  Thought it was an ileus, but there was so much liquid coming out of the new stoma, I was considered an "abnormal presentation".  Eventually got a PICC line and TPN for 5-6 days, but they apparently didn't want me going home with it, so it was pulled.  They also did an upper endoscopy to look for any other reason for the pain, suspecting gastritis, and found a medium hiatal hernia (news to me), and mild inflammation.  So I'm on protonix and carafate for a few weeks.  (And ya, I'm 62, you go looking for things you're going to find them.)

My new stoma has become high output.  When I first left the hosp. after surgery, things were working well - getting thick, no where near 1200 cc, which is considered a "danger" zone.  Now, I'm eating more so sometimes it's thick, but it gets watered down immediately with the golden liquid coming out.  Maybe TMI, but it's just weird how it worked fine early on and not so much anymore.  They don't want me on imodium yet, as they think it might make my pain worse?

The pain levels are not too bad, but definitely still there in the gut.  My backside is doing pretty well, not much pain at all, and not much drainage anymore.   There's some extreme fatigue/weakness as well.  One of the fellows at the clinic told me yes I won't be feeling well for quite awhile, he said this is a HUGE operation, and ... his words ... I was butchered!  We got a laugh out of that.  A very honest man.

So now I guess it's a waiting game.  I need to find a way to stay hydrated and eat more, which is difficult since I'm not exactly hungry.  Any tips for food at this time are welcome!

I'm still glad I had the jpouch removed, even through all these setbacks.  My advice to those who are considering removal - do it now, while you're still young, as things do NOT get easier with age.

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