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colon fistula/now facing 3rd surgery colon fistula/now facing 3rd surgery

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  #1  
Unread 04-20-2005, 08:15 PM
colon fistula/now facing 3rd surgery

Dear Sisters,
I have not posted in a while but I really could use some support. My sorry story started last summer with my hyster and surprise colon resection for endo. I had lots of complications but eventually did ok. In December I was treated for what my general surgeon thought was another staph infection in my vertical incision.
After months of going on and off antibiotics, seeing a gastro doc, colonoscopy and fistulogram testing I finally have my diagnosis--a coloncutaneous fistula. It leads from my sigmoid colon to outside on my skin. It's usually just clear drainage but twice I've had an episode of stool coming out of my incision area. It's beyond gross.
My general surgeon says he's never seen anything like this before so refers me to a colorectal surgeon. He can't tell me why this happened but says I'm lucky its not leaking into my vagina which is more common?
My gen surgeon says maybe they missed a tiny spec of endo. I thought endo dies after 6 months without estrogen. I lost both ovaries and am not doing any HRT.
The gastrointestinal doc I went to for colonoscopy found nothing and he is considered one of the best in the country. He says it might be a microperferation that wouldnt show up on his test.
Now the plan is to re-resect my colon again. I don't understand why they need to do this and I am terrified. If it's a tiny perferation why such major surgery?
Has anyone ever heard of something like this before. Am I going to the right doctor--colorectal specialist? My gyn surgeon is long out of the picture-I dumped him back in the summer because I totally lost faith in him.
I trust my gen surgeon--he's been with me all the way on this saga. How many opinions would you get? I don't want to end up with a colostomy bag.
Thanks for listening. I hope someone out there can help me

Allyson
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  #2  
Unread 04-20-2005, 11:15 PM
colon fistula/now facing 3rd surgery

Hi Allyson It sounds like perhaps you had a tiny tiny nick in your colon or slight gap in the incision in your colon where the resection was done, and that healed attached to your skin so that you have a very small opening directly from your colon to the outside of your body. No fun at all!

If that's the case, then yes, it's a very rare type of fistula, even more rare than a rectovaginal (aka colovaginal) fistula... we've had several members here who have had those.

If the fistula doesn't heal up on its own, then the "fix" would be to reopen the incision, resect the small area of colon near the fistula (presumably the wall is weak there anyway so you'd want that small section removed) and then stitch/staple everything back together properly and let it heal right this time.

If you do a thorough bowel prep in advance of the surgery, there should not be an ostomy afterwards. Did your DR say there would be? I had a colon resection two years ago (over three feet were removed); before the surgery I was told that the only reason I'd have a colostomy bag is if the bowel prep was ineffective or incomplete, and feces spilled into the pelvis during surgery. So, the DR had me do a two day bowel prep - believe me, there was nothing in there to spill.

I do think your surgeon is steering you in the right direction by referring you to a colorectal surgeon. As for the possibility that endo was left behind.... the odds of that are pretty good. Surgeons do the best they can, but endo is hard to remove completely - it can travel around in the pelvis and attach to all sorts of places you wouldn't think it could be. Without added estrogen, theoretically it wouldn't grow, but our bodies can make some estrogen in abdominal fat cells, so even those without ovaries who are not on HRT are not completely estrogen-less.

Did your DR have you use some form of progesterone or progestin after your hyst? If not, then you might want to ask about it this time.

Let us know what the colorectal surgeon says, OK? I hope they're able to get this taken care of ASAP... it must be just dreadful

s,
-Linda
  #3  
Unread 04-21-2005, 04:37 AM
colon fistula/now facing 3rd surgery

Dear Allyson,

Sounds like you are not having much fun there. You poor thing. I really felt for you when you said that you had something gross comming out of your wound area. I don't know what is worse. I had feaces coming out of my vaginia less than a week after my hyst and it was awful. I was put back into hospital and given a tempory stoma (illiostomy bag) What was only going to be a couple of months developed into nearly 12 months. It will be 12 months next month since I had my hyst. Anyway you can read my story on here somewhere. I think if you type rectovaginal fistula you may find my story there. Sorry I don't know exactly where to find it. My name is Beth. If you do happen to end up with a stoma then its not as bad as what I thought. The bowel side of my fistula has healed and am still waiting for the vaginia side to heal, then it will be reversed. God is Good. He has really looked after me through all of this, and He doesn't give us anything that we can't handle. Please let me know how you get on and I am here if you have any questions about "bags" etc. It would be only tempory for you too I would asume and I think of it as just a little bit out of my whole life isn't so bad. There are much worse things out there. I really do feel for you and pray that you will be all fixed up really soon. Feel free to PM me or e mail me. I think my e mail is here somewhere. All the best, Beth.
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  #4  
Unread 04-21-2005, 05:41 AM
colon fistula/now facing 3rd surgery

(((Allyson)))

I am so sorry that you are having to deal with this. I know it has got to be tough to handle all of it. It seems to me that you are going to the right doc. They have to do the surgery so they can make sure that you are not leaking anywhere else or to prevent the fistula from becoming bigger and then more of a serious problem. Yes, depending on the location of the fistula and the patency of the bowel around it, you might end up with a illiostomy or colostomy...these need to be done to allow your body to heal and the majority of the time they are reversible for fistulas. I know you don't want this, but if your fistula gets any bigger on the colon side,the contents could spill into your abdomen and you are talking about major pain and very dangerous. We will be here to support you through whatever happens, and just like Beth, there are others here who have dealt with the stoma/bag that can help you. Please keep us updated on your progress.
  #5  
Unread 04-21-2005, 08:51 PM
colon fistula/now facing 3rd surgery

Dear sisters,
Thanks for the responses. This site never ceases to amaze me--I've always gotten such kind words and good advice.
The colorectal surgeon was very nice and gentle and agrees that I need another resection. The only other choice might be total bowel rest--being fed by IV's for 6 weeks living NPO--which doesn't sound very appealing either. And of course there is no guarantee this would work and I could end up having the surgery anyway.

Linda:
Thank you for your many excellent posts about your colon resection. Much appreciated.
As for the colostomy, the colorectal doctor said there was a small possibility. Maybe my regular doc was just preparing me for the worst case scenario.
The colorectal specialist said my problem could be caused by a failure to completely heal ( the anastmosis??), endo's dreaded return or possibly because I am always constipated. Having a full bowel can put extra pressure on the area.
I'm wondering why you asked if I was on progesterone? I was told no hormones at all post hyst because I had a DVT and because of the endo. What would it do for me?

Thanks again for your support
Allyson
  #6  
Unread 04-21-2005, 09:08 PM
colon fistula/now facing 3rd surgery

(((Ally))), progesterone can help inhibit the regrowth of endo, if any is present. So can synthetic progestins (Megace is sometimes given for this purpose), but they tend to have side effects. I don't think progesterone affects DVT but that would be something to check into. Just something to ask your DR about, it may or may not matter in your case depending on what they find when they get in there.

I'm glad your colorectal surgeon clarified the point about the ostomy. It's not usually necessary unless the resection is done on an emergency basis (with no prep), but they do have to advise us that it could happen.

Did the surgeon give you a date yet? Or are you having further tests before making a decision? I'll keep my fingers crossed that everything goes well for you.
s,
-Linda
  #7  
Unread 04-21-2005, 09:23 PM
colon fistula/now facing 3rd surgery

Allyson -

We are here to help you ! ! ! Hang in there!

I developed several fistulas after my hysterectomy for severe endo. My colon was leaking into my vagina and also into my bladder in several places. During all my research into these kind of fistulas, I have read about fistulas coming thru the skin. If there is an infection or leak - it looks for a way out of the body - either thru the skin or thru a hollow organ like the bladder or vagina. You may have had another hole/fistula that they missed or maybe your resection got infected and/or started to leak.

The reason they have to do another resection is because that part of your colon is damaged and they have to take another piece out. I had my resection a year ago and still believe that they missed a connection because I am still experiencing infections and symptoms.

A colorectal surgeon is the best bet to resolve this.

Let me know if you need anymore information.

Take care - girl ! !

Anita
  #8  
Unread 05-04-2005, 08:57 PM
Barium enema test

Dear sisters
I'm still waiting for a surgery date but this should happen in the next 2 weeks.
My next test is a barium enema to test the exact location and tract of the fistula.
Has anyone ever had this test? What should I expect?

Many thanks,
Allyson
  #9  
Unread 05-04-2005, 09:16 PM
colon fistula/now facing 3rd surgery

Hi there, Yes I have had one of these. I didn't find the test very bad at all just a bit uncomfortable. I had the one where they pumped stuff into my bowel and put a dye thing through it and it showed that the fistula had closed but I still have the stoma because I still have a slight vaginal leak. The stoma isn't worrying me I have got used to it and I know that one day it will be reversed.

What kind of surgery are you haveing? Are you havin the fistula repaired or are you having a stoma in place until the fistula heal. When I look back on it all now I can see where the stoma was the very best thing for them to do. Don't be alarmed if you have to have this. Hundreds of people live with them all of their lives and if you have to have one it won't be forever. I am always here for you to talk to, you really need someone who understands stomas to feel not all alone.

Let me know what happens and will be praying for you.

Regards Beth.
  #10  
Unread 05-04-2005, 09:16 PM
colon fistula/now facing 3rd surgery

Hi Allyson -

I had this test done. It's not the most pleasant test but hopefully will reveal the tract. When I had it done it did not reveal the tract but they did a CT scan an hour later and it reveal contrast material in the wrong place - in my bladder and vagina.

Has your surgeon told you what they plan on removing?

Let us know.

Take care and Hugs.

Anita
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