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Longish post, sorry:

Had a bad month (Oct.) of fevers, headaches, fatigue, pain, lump in butt cheek, drainage, night sweats, etc. etc., so called my CR Surgeon at the CC who got me in for an office visit.  On anuscope, she saw an "abscess-like" thing inside which was oozing pus.  I told her - once again - that I am ready for pouch removal, which we scheduled for Nov. 24th, did the pre-op testing, and I was sent home with antibiotics to take 'til then. 

Things went even further downhill over the weekend, so I sent her an email update.  She got me in immediately the next day and I got an EUA, where they found a 10 cm abscess that was hiding behind the pouch.  A mushroom drain was put in, the result of which was like having an ostomy without an appliance on.  Poo was everywhere, running down legs (even with thick padding), ugh.  I was admitted that day, and scheduled for an ileostomy with an EUA thrown in for fun.  Ha.

So, I had a laparoscopic ileostomy 4 days later, along with a pouchoscopy (EUA) in which the large abscess was drained and a seton replaced the mushroom drain.  Yes, I have a 2nd fistula now, 2 setons.

I was told that ulcers bored through the pouch on the left side and created the abscess under the pouch, pushing toward the right side where it "expressed" and became hard (induration) and red.  They also flushed my pouch with hydrogen peroxide (I think) and found "at least" 2 holes in my pouch.   The dx. was Perianal Crohn's disease, perianal sepsis, abscess, fistula, malnutrition of moderate degree, complications of intestinal pouch.

I was told the pouch has to go, so after everything cools down - the inflammation, abscess, fistula, ulcers, etc. through this diversion, I will be scheduled for full removal of the pouch, and barbie butt.  This will take at least 6 months to occur.

In the meanwhile, however, I have my new best friend, my end ileostomy Betty, and she is the best.  I LOVE my ileostomy - didn't know how miserable I had become until the first time I emptied my bag and there was no pain, just a quick, easy empty of the bag. The drainage from both fistulas/setons has gone down to almost nothing most days, which is also a true gift.  It's been 4 days since the ileostomy was created, and my poo is already thickening, I'm eating fairly well, and moving around as much as possible.  I was discharged 3 days after the surgery.  No pain meds necessary anymore, although there is a bit of pain right after eating.  

So there's the story of my pouch failure - after 25 yrs. of mostly struggling.  I'm glad this first phase is over with and look forward to feeling better, eating more, gaining weight, getting on with things.  Onward and upward.....

 

 

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Richard - thanks.  I've been following your story with great interest.  Will definitely be asking you and the others lots of questions in the ostomy discussion when I get my sh** together a little more. 

Halo, good luck!  I'll be following your removal story as well.  I'll also be picking up some Ensure with extra protein to supplement my meals.  The Cleve. Cl. recommends Impact, which I've tried as well.  Just wish they didn't all have so much sugar but for 4-6 weeks will handle it.  

n/a posted:

Richard - thanks.  I've been following your story with great interest.  Will definitely be asking you and the others lots of questions in the ostomy discussion when I get my sh** together a little more. 

Halo, good luck!  I'll be following your removal story as well.  I'll also be picking up some Ensure with extra protein to supplement my meals.  The Cleve. Cl. recommends Impact, which I've tried as well.  Just wish they didn't all have so much sugar but for 4-6 weeks will handle it.  

Omgoodness. You've been following my rambling? 

Lol. 

I'm  in a good place. No real complaints.   

Richard. 

Back at the Cleveland clinic.  Was having severe pain, called CC (it was the weekend of course), and was told to go to local ER for CT scan.  Local ER told me  CT showed an obstruction.  They transported me to CC.  Apparently they felt I  was too complicated for them.  The docs at CC are thinking either adhesions or ileus.  Will do more testing tomorrow. 

Good luck. 

If you are having it removed all that garbage will end.  All the complications and such stopped. Of course I have to deal with what I have but it's a breeze compared to what it was.

My surgeon would not leave the pouch in. Period. Just more problems. 

Now if your having an obstruction at the stoma that's different. I only had those with the temporary ileo. Never have I had one with the permanent and I eat everything. And don't chew well. Which was the cause of obstruction with the temp. 

My well wishes go out to you either way.  I know obstructions are painful.  Can be. 

Richard. 

Hope you are doing better! Ugghhh to bowel obstructions. I have been diverted w/my J pouch still in and a temp ileo for the last 2 years and I am finally ready to get rid of the pouch. A small part of me was hoping things could be reversed but that does not look possible. I can’t risk more fistulas and setons. I hate the setons! And I am not willing to try more biologics in hopes of things getting better. It is definitely way harder to go back into surgery now that I am feeling better but I will get there. I will follow your journey through pouch removal and wish you the best!!

At my 2nd 10-day stay at Cleveland hospital, I was unable to eat anything without throwing up.  Even after countless tests, they couldn't decide whether I had a stricture/adhesions or my bowels just were pissed off and went on strike for awhile.  I was put on TPN via a central venous catheter, and am on it 'til this day (at home), but am weaning off and hope to be off in a week or 2.   On the bright side, I am feeling better, eating almost normally, gaining weight, my output has thickened, a lot (except for morning coffee time!) , but still tired.  Trying to stay hydrated - for those in need of serious hydration, try "drip drop", it's awesome, was recommended by CC, but quite pricey.  

I'm pretty happy with the ileostomy, but am having some problems with the peristomal skin.  I did find a local ET nurse who is awesome, so am feeling hopeful that will be resolved before too long.

It's been a long haul, and now I'm sooooo nervous about the actual jpouch removal surgery.  Have decided to hopefully wait until the end of next summer to have that done.  My jpouch has been quiet, except for expelling a little mucous and other "stuff" from time-to-time, and the two setons are still leaking a little "stuff" as well, so still have to wear a pad and barrier cream.  I'll be so glad to have those gone!

SAFF, I have Crohn's in the pouch, as well.  Along with the lovely fistulas, abscesses and ulcers.  A mess.  Please keep in touch re. your removal - hope it all works out well for you.  Lori, I feel exactly like you, except I have no hope/desire of being reconnected.  Do you have pouch removal scheduled yet?  I'd like to follow your experiences with it, as well.

What a trip, eh?

Glad you are doing better N/A.  I too was diverted to an end ileo aroun 6 months before I had my j-pouch and rectal stump removed.  That surgery has to be done open so expect a midline scar.  Mine was larger than it was when they removed my colon but the recovery was better than from the colonectomy.  It probably had something to do with already being use to an ileo.

Have you looked into NUUN hydration instead of drip drop.  It is much more reasonably priced.  It is on Amazon or you can order it directly from NUUN.  I fellow j-poucher bicyclist on here suggested it years ago.  It comes in tablet form and you add it to water.  Like Alka-Seltzer except no fizz, lol.

I hope you are off TPN soon!

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