Re: 2 failed pouchograms!

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dodge

Hi
I've had a bit of a rough time with my pouch surgery and just wanted to hear from anyone who may have been through something similar.
I had my pouch formation surgery on 15th March and found it really really hard physically. I also had an infection which opened up my wound so huge it was pretty scary.
Well it closed after about 10 weeks and has now actually healed very well but I lost just under 4 stone and have struggled to put any back on.

I had a pouchogram in June after my wound had healed and was told I had a hole in the pouch as it hadn't healed properly. I also started feeling really sick around this time and the scan also confirmed an infection so i was given antibiotics. Well I just seemed to get worse after the antibiotics finished and I felt like I was on deaths door so they got me in to clean out the infection rectally with hope that the pouch would close.
I immediately felt much better and things were looking up until about a month ago when all of a sudden I knew the infection had returned.

I've just had another pouchogram and knew it was gonna be bad news and have now been told that now my options are:
1. Have the pouch removed (major surgery)
2. Open me up to try and correct the pouch (major surgery)
3. Have the infection cleaned out rectally and go on high dose antibiotics and reassess in 6 months.

I've said ill wait 6 months and see how it goes as I just don't feel strong enough to go through the surgery again after I struggled so much last time.
I'm actually feeling so sick from the infection and after everything else I'm wondering if I've done the right thing as I'd had a perfecting functioning Stoma for 6 years with absolutely no problems and now I'm living like this, I haven't been able to work properly since march and I'm self employed, so no income!
I'm also getting terrible discharge constantly from my pouch as the infection leaks out which is so irritating both mentally and physically.

I suppose what I want to know is if anyone has failed 2 pouchograms and then gone onto have a good functioning pouch ?

Wow sorry for the essay!!!

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Jan DollarModerator, RN, retired

Well, I guess your problem is not that you've failed the pouchograms, but that you have this persistant pouch leak that has not healed. After this much time, I seriously doubt that more time and antibiotics will improve anything. So, you probably should look at this time on antibiotics as time to improve your health while waiting for surgical repair.

I had a 1-step procedure, and developed a pouch leak, but I guess I was lucky that it was minor, because by the time the presacral abscess had formed, the leak was sealed. The abscess was quite large, and I was as sick as a dog. Over 500cc was drained through a transgluteal catheter. The difference in my case was that the catheter drain was left in place for about a month, until the abscess pocket completely collapsed. I still get pain from time to time, but the abscess never recurred. Again, lucky I guess.

Unfortunately, the longer a leak like this stays open, the less likely it is going to heal. Folks here who have these persistent sinus tracts that cause infection generally wind up needing surgical intervention. If the pouch cannot be salvaged, then a redo will be necessary.

But, usually what can be done is a revision where that leak hole is made larger, so that the abscess pocket actually is made part of the pouch. Stool can freely flow then, so no infection occurs. Kind of a big surgery, but nowhere near as big as a redo. I would inquire about that option.

Good luck!

Jan

10/30/123:58 PM

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dodgeMember

Maybe I need to ask some more questions.
Is the infection caused by an abscess then as they haven't mentioned one.
I did have the revision where they made the hole bigger back in August but after my last pouchogram they said the hole is only marginally thinner but just as long.
I'm absolutely terrified of more big surgery to correct it and not sure what a redo would consist of. My surgeon said that after they had constructed the pouch initially it was a stretch to make it reach my rectum.
Really don't know what to do, they mentioned another revision but I'm waiting to hear from my surgeon who is currently in the states.
I don't want to go back to an end and inevitably perminant Stoma after going through everything in the last year without even getting a functioning pouch.

10/30/125:19 PM

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Jan DollarModerator, RN, retired

Generally, in these cases the abscess IS the infection. It is caused by the pouch leak and the bacteria from your pouch being trapped on the outside of the pouch. It would seem that when they did the revision, they did not open the hole large enough, otherwise the infection would not persist.

I would be very cautious about entertaining the notion of a pouch redo if you had an "iffy" reach in the first place. I would not be at all surprised if that was the reason that it did not heal properly and the leak/hole developed. Having the pouch attachment under any sort of strain tends to undermine good healing, lead to poor circulation, and failure of the suture line. It is also very possible that your original Crohn's diagnosis was correct, so another reason not to risk having pouch redo. Even the indeterminate diagnosis reduces your chances of success.

The redo is basically scrapping the original pouch and starting over.

If it were me, I would limit myself to possible options of salvaging the current pouch, and opting for end ileostomy if all else fails. I don't mean to rain on your parade, but just trying to be realistic. I could be completely wrong.

Jan

10/30/126:55 PM

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