PLEASE HELP!!!!

I had my j-pouch surgery in 2001 and from 6 months after the surgery i was going back to my surgeon complaining about discomfort near the cocyxx area. my surgeon continually said it was pouchitis however i did not suffer from the same symtoms of pouchitis.

finally after 6 years and a new surgeon they have discovered the problem in that one of the staples that attaches the j-pouch to the anal passage had come away creating a cavity where stool will biuld up pushing up against my cocyxx. my new surgeon now wants to bring up the stoma again for a period of 6 - 12 months to allow the staple to be reattaced and heal and then cloase off the stoma.

Has anyone been in the sitation before and if so can this be cured without the pain and of 2 more surgeries?? can it just be stapled back down in a basic key hole surgery??

Joey - 33 Melbourne Australia.

mate
that's really disapointing
I wish you the best of luck with whatever happens. I have experienced a similar situation with a 3 step OP becoming a 4 step because of a complication with calcification of scar tissue which was 2 years ago & I still have feelings of despair, though short lived. Reading other peoples experiences has on this site has helped & I just wish you the best

good luck

Hi Sideshow,
I am not an expert but if they can do the whole procedure laparoscopically I am sure they can do repairit by lapro too.! Sounds abit drastic to have a temporaray ileo again.

This is going to be a pouch repair or even perhaps pouch reconstruction. If this has been long standing, I don't think that trying to close it up will work, as it will just be a place for an abscess to form. From what I have read, if there has been a long standing leak, that pocket basically becomes part of the pouch and what is often done is just open the pouch up wider to that area, so there is no stasis of stool there, causing infection and pain.

Pouch salvage is pretty complicated and I would want a surgeon with a fair amount of experience with it.

But bottom line, there is no medical treatment for this, only surgical. I also would not hold out for laparoscopic on this, because you very likely have a lot of adhesions, making lapro difficult if not impossible.

Jan

Thanks for the feed back. i have arranged to get a second and third opinion from other surgons in the field hoping that one can come up with a less drastic option.

I have been informed that the cavity could be cleaned out and filled with a surgical "putty" and then stitched closed hoping the "putty" stays in and helps the tissues in the area scar over closing off the cavity.

Has anyone heard of this and if so did it work??

the concern with this is that thru frequent bowel movements the "putty" may not hold making it a waste of time.

I appreciate all feedback!!

Sideshow, I had pouch prolapse and some other issues, and had surgery in February to repair thngs. When he went in, I was full of adhesions, and part of my adhesions fell down and scarred into my pouch. It took over 6 hours to complete the surgery. I've had a temporary ostomy for 7 months and will be having surgery next month.

My original surgery was a one step done in March of 2001. I am a little different from you in that I had a great working jpouch for 2 years before I started having problems. I suffered for 2 years going for tests, consultations, etc. before I had surgery in February.

Since I've had my surgery, my life has been great. This is the first time I had an ostomy, and I was nervous about it. I have not had any problems, I have been on vacation, and will be going on another one next week. I have been able to eat anything I want without taking massive doses of laxatives, or other meds and without pain.

I'm just telling you this because you need to put things into perspective. Yes, having more surgery stinks, but the object of all this is to have a better quality of life. And if it takes having a ostomy for a little while to let your pouch heal, then I think you need to get your mind ready for it.

My surgery was supposed to be an quick and easy surgery, he was not planning on an ostomy. I had a feeling this was not going to be easy, and I was ready for it. And, still, it was a rough surgery, and recovery. But after a few weeks I felt great.

My surgeon does surgery laproscopically, I have a 4" incision below my naval and he went a little further for this one because I had alot of adhesions in the pelvic area.

Even if you find a surgeon that will tell you that an ostomy is not necessary, you need to prepare yourself for one, because they can't honestly know for sure until they see what is going on inside you.

I agree with Jan, pouch repair is so complicated and you need to choose your surgeon by his competence and qualifications. If you go with the one that tells you what you want to hear and he's not qualified, you may be in more trouble than you are now.

Good Luck,

janna

Hey Joey!

It's great to hear from a fellow Melburnian but I'm sorry to hear about your problems.

I was treated at the Alfred, which has some really good surgeons at the Colorectal department.

Sounds like what your surgeon is talking about is a fistula plug (I frankly have never heard of surgical putty, but perhaps he is just trying to make it understandable to you). I will tell you this, a long standing abscess/fistua cannot be fixed easily. Other opinions are a good idea. I agree with Janna, that you should choose your surgeon by his experience and skill and his ability to ensure your trust, not the one who just paints a pretty picture.

Jan

Thanks fo the replies.

Janna you said you had a prolasped pouch. what do you mean by this?? my pouch in fact works prfectly fine however one of the staples has given way creating this sinus. It still is good working order howver i get pain everytime I make a bowel movement.

Nikki2 which surgeon did you see at the Alfred Hospital in Melbourne?? i may give him/her a call to get another opinion on my problem.

thanks again.

The easiest way to describe it is that my pouch came loose at the very top, so that when I would push it would come down and cover the opening, making it very hard to empty. I had to restrict my diet and take alot of laxatives to make it easier to empty. It doesn't happen very often, my surgeon who is one of the top doctors to do this surgery, has seen less than 5 or 6 cases. My surgeon has tacked it back up and if it's still in place, I'll be having surgery next month.

janna

Thanks again for the feedback.

after dicussion with another surgeon he is assuming that my pathology may have changed and that now it looks like i may have crohns and not ulcerative colitis. Is this possible??

He said this may be the reason why my pouch has created this enclosed sinus which is not an extension to my pouch. he is saying that he does not want to do surgery at this stage but i could be treated with medication to avoid any infection. Can anyone suggest what would be the best medication to keep inflammation done to prevent the sinus from getting any larger and spreading?? Is there a special diet i could get on to to help control this situation??

i am going for a third opinion next week (Peter Carne) so any extra information i could have would help in my consultation with the surgeon.

thanks

Joey - Trying to stay positive!!!

Sorry the typo in my last message was that it is an extension of my pouch!

Joey- you don't have to make a new post if you make a typo or want to add to your post. All you have to do is click on the edit/delete icon in the lower right corner and you can change or add anything you want to your post, or delete it altogether if you wish.

My reading of the medical literature indicates that fistulas that develop at the anastomosis (connection) between the pouch and the anus should not be considered a sign of Crohn's but simply a surgical complication that can occur regardless of the underlying disease. I certainly would not make an assumption of Crohn's without further testing that would be more definitive. While it is possible, just the presence of the fistula does not mean Crohn's. If you had not had pelvic surgery, then it would be a more likely sign.

Jan

Jan - if it is not crohn's and it is a fitsula causing this problem what is the best remedy to fix it??

thanks for the heads up on the edit/delete.

Joey!!

Regardless of what caused the fistula, there is no easy fix and they often can be very persistent, no matter what you do. For some people, antibiotics and management of stool consistency is enough to get it to close. For others, more invasive tactics, such as fibrin glue, seton strings,and fistula plugs are tried. When these fail, surgery is the next option with a fistulotomy followed by a more major repair (such as graciloplasty or avancement flap procedures) may be necessary. Sometimes even surgical repair is not enough.

Generally you start with the simple, conservative approach and move on the the more complex and invasive ones if there is failure. Expect to spend at least several months with each phase of treatment before concluding it has failed. If this is a simple anal or rectal fistula that communicates with the perianal skin, it is more likely to heal that those that communicate with another organ.

Jan