Hello All-

Audrey is now 12- finally in remission (just over a year), after 7 years of UC/Crohn's. Anyway, to recap, what was to be a J-pouch ended up as a straight pull thru a couple of years back- surgeon says it was because he couldn't get enough intestine free from her belly fat (2 years high dose steroids). Then she had a bought with an anal fistula, then an abcess in the same area within a year. (leaning toward Crohn's diagnosis now)

Two problems remain-

1) She has suffered from fecal incontinence since her reconnect surgery.

2) She had a loop ileostomy last spring (due to blood returning in her stool from the rectal stump left behind) so her intestines could "rest". The problem is, the loop didn't work and after about two weeks, most of her waste was going out her bottom anyway. Saw the GI to see what to do in the meantime, he started Asacol (Pentasa hadn't worked twice), two days later no blood- that was last June, and she is still good. However, she still has her loop that doesn't work. She only has tablespoons of output each day.

We went back to the hospital to get it closed up earlier this- the surgeon (a new guy, the other one went to a NY hospital) says because she's had so many abdominal surgeries, he isn't sure how many veins are left to feed the intestine past the stoma- and if he did the surgery- she possibly would end up with an end ileo.

So, recent changes in our insurance have now opened new possibilites for care. We've been thinking about going to Mayo Clinic (Minn) for treatment to see if she can be "fixed".

The bed issue is HUGE for anyone, but my girl is having a really tough time with it. Also, it would be great to get rid of the bag.


Sorry for the length of my note- my questions are:

1) anybody had successful treatment following fecal incontinence problems?

2) Any thoughts on Mayo clinic (Minn)- great docs/surgeons there?

Thanks in advance for your help!

Should have been more clear- the fecal incontinence is just at night. During the day she only has small "leaks" every now and then....

Best of luck to you and your daughter. My only advice is to see a top pediatric surgeon with lots of experience in Jpouch's and IBD surgeries. Even if you have to travel far, at this point, I think it is well worth it.

I think you should consult with Dr Fazio at the clevland clinic before doing anything,he is the best in the country! and trains other top surgeons,he only handles special cases that are difficult,Good Luck Ed

I'm so sorry Audrey is going through yet MORE stuff. Dang - she needs to catch a break.

Does she still have the straight pull-through? I would think that could be a cause of incontinence. Even with the ileostomy. If the loop isn't working are they able to 'update' it to an end ileostomy?

I wish I had more advice. But I think you're doing the absolute best thing by going to Mayo. You might want to do a search here on Mayo because there are lots of positive posts about it. I think it's listed as #1. You could also do a remote consultation with Cleveland Clinic and see if they have any suggestions.

Again, I'll be sending those vibes that Audrey gets to be a healthy normal young woman as soon as possible. You all have been through hell.

Please let us know how things are going.

kathy

Thanks for the input guys- we are definitely going to Mayo- calling on Monday. As far as the end ileo goes, that is definitely still an option- we just want to exhaust all other options first.

Any info on the nightly fecal incontinence? Has anyone found a treatment, etc. that works? It's been just over 5 years of nightly accidents- we tried Codeine in the beginning, also Immodium, Fiber in powder, pill, and wafer form, and limiting food at night. She is a deep sleeper which doesn't help. Any thoughts?

I had a lot of success with a rectal physical therapist to end my nightly incontinence. She used biofeedback and assigned specific exercises to strengthen the muscles that were weak. It worked wonders, in as little as three weeks of treatment. If you go to the Mayo I am sure they will have a rectal PT on staff, be sure to ask the doctor for a referral.

Sue

Personally, I think that the primary problem is the straight connection and that is why it has largely been abandoned. There just is no place for storage. Night leakage is more common because the sphincters relax some in our sleep. The looser the stool there, the more likely it is there will be a leak. I think it is a good idea seeking another opinion at Mayo. Cleveland Clinic is a good choice too. But, it certainly would not hurt to improve her pelvic floor in the meantime with physiotherapy.

Jan

It does sound like Audrey's situation needs some very close attention. I think that a major clinic would be a very wise place to go to get it. I personally went to Mayo Clinic when my local surgeon failed me, and had great results.

I strongly recommend it, especially in Audrey's situation becasue it sounds like she needs some specialized attention.

Good luck!

Rick

We were trying to figure out whether we should take Audrey to Mayo or to the Cleveland Clinic, and a change in insurance made the decision for us. Audrey has an appointment with Dr. Fazio on December 6th and surgery has already been scheduled for the 10th. His nurse (who is absolutely wonderful) says Dr. Fazio will perform either a J-pouch (YEAH!) or a K-pouch. Either should fix both of her remaining problems, but we are hoping for the J. In the meantime, we both are on a diet, as Gina said recovery will be much easier if she weighs less than she does now. Hopefully 15 to 20 pounds will be gone by then. Thanks for all the great advice!!!!

That is great news! I hope all goes well. Lots of people here say Fazio is the best. Our thoughts will be with you.
Mav+

What great news. I just wish it was a little sooner. But I guess December is almost here, isn't it? Please keep us updated.

kathy

Hey everyone - my takedown was October 4 2006 and I still have leakage nearly every night. I found this thread and wondered how Audrey is getting on?

I haven't the option of the Mayo as I am in Europe but would appreciate any advice or exercises you can offer. My surgeon just says take more immodium but it seems to give more gas and not much benefit.

Although I can live like this forever, it would be FANTASTIC to be able to go to sleep nude for a change with no worries! Thanks all - Merry Christmas & and a very happy new year!

Love, health & peace, the rest will follow...

Mayo Clinic is great. The GI doctor there that is a pouch expert his name is Dr. Darrell Pardi, and I met an excellent collerectal surgeon and is name is Dr. John Pemberton. I have been to both Mayo Clinic and Cleveland Clinic and I thought that bother facilities do great jobs.

Hi Gillian,
Have you tried Kegel exercises?
Maybe try to eat a banana or rice before bed. Like a snack but instead of ice cream have a banana or heat up some rice. Both tend to slow things down for me.