Stool seeping through stiches around stoma - what do I do???

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Ohio43
Regular Member


Date Joined Aug 2007
Total Posts : 212
   Posted Today 12:00 PM (GMT -7)   
Hi everyone!

I just saw my ET Nurse yesterday because I've had a really hard time keeping wafers attached. I've had to replace the entire thing everyday for the last 8 days or so. The ET nurse cannot figure out why the bags will not stay on. The Convatec ET Nurse told my ET Nurse to try me in a convexity wafer. She also has me using Torbot Cement to hold it on. Nope, come 2 a.m., I was changing the entire thing. Then this morning I had stool completely covering the underside of the wafer. My skin is so irritated by yeast and/or allergic reaction. While I was "airing" it on the couch I was watching with a mirror how the stool was coming out and saw that it seeped through the stitches around my stoma. So I know there is an opening and this is the problem. I called my doctor who told me I'd need to see an ET Nurse and they won't be in till Monday or I could go to the emergency room and he'd contact the resident colorectal doctor to take a look.

What a nightmare! Have any of you been through this? Know of any good products to use?

Thanks!

Mary

JudyK89
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Date Joined Dec 2006
Total Posts : 1986
   Posted Today 12:21 PM (GMT -7)   
Do you have Crohn's Disease? Sounds like a fistula. You must have an opening in your intestine that worked it's way to the surface along the outside of your intestine.
Is this surgery new?  You mentioned the stool coming between the stitches? Could the stoma be pulling away from the skin?  If so, it's a wound care issue, but you shouldn't have stool coming out of the opening.
 
I'm not sure what an ET could do, except help you figure out how to pouch it up until you can see a surgeon or GI (depending on whether you think it's a fistula or the stoma pulling away from the skin). You do know all you can do is make the opening big enough so the stool all goes into the pouch instead of under the wafer.  Now that you know where the stool's coming from, you can use an Eakin or something to try and corral it into the pouch.
 
I think you need to see someone. I would probably go see the colorectal guy your doctor mentioned.  You can always see an ET later. 
 
Good luck, let us know what happens.
 
 
Judy
Crohn's Disease   
Too many surgeries, ileostomy6MP for maintenance.
 
 

Post Edited (JudyK89) : 11/17/2007 12:33:06 PM (GMT-7)


vette guy
Veteran Member


Date Joined Nov 2006
Total Posts : 650
   Posted Today 8:24 PM (GMT -7)   
It sounds like a fistula to me too. The ET nurse can help you deal with the appliance, but you really should see the doctor ASAP. I don't mean to alarm you, but the earlier you see him the better the chances for closing a fitula with medication.

Ohio43
Regular Member


Date Joined Aug 2007
Total Posts : 212
   Posted 11/27/2007 6:48 PM (GMT -7)   
Hi Judy and Vette Guy!

Thanks for replying. I've finally received an answer to what is going on. I spoke to my doctor on call who sent me to meet his resident colorectal doctor at the emergencey room. He looked at my stoma and told me what was happening is ok. Since I have a temporary loop ileostomy, the open area is called a distel lumen (or mucous fistula) which is what is created with a loop ileostomy. Believe me, I was so scared. I had no idea what was going on. With a convexity wafer, paste and a larger stoma area, I am able to get the leakage problem under control. My doctor does not believe I have crohns. I've had blood test and a colonoscopy that did not reveal anything.

From: http://www.emedicine.com/ped/topic2994.htm

For an end stoma the bowel is divided, and the proximal end is brought through the abdominal wall. The distal nonfunctioning limb can be brought out through the same abdominal wall opening as the end stoma (ie, double-barrel stoma), it can be brought out through a separate incision (ie, mucous fistula), or it can be closed and left in the peritoneal cavity (ie, Hartmann procedure). When the distal segment is left inside the abdomen, many surgeons fasten it to the abdominal wall adjacent to the end ostomy or tag it with a nonabsorbable suture to facilitate identification when the stoma is reversed. A loop stoma is created by maturing a segment of bowel over a rod or tube without completely dividing the bowel.

Loop stomas provide excellent decompression and have the advantage of simple closure without the need for a separate laparotomy in most cases. However, loop stomas are not completely diverting because proximal contents can spill over into the distal limb. Therefore, they should be used with caution in patients in whom stool in the distal bowel may be problematic. A decompressing stoma, or blowhole, is created in patients in unstable condition by opening the antimesenteric border of bowel without mobilizing the entire loop of bowel.

This is why I have a temporary loop ileostomy...

had a temporary loop ileostomy put in place due to reconstructive rectovaginal surgery and a rectovaginal fistula from having a baby 21 years ago at which time a had a 4th degree laceration due to an episiotomy. Since June 21 of this year, I've had 4 surgeries (the 3rd one on July 23 included my temporary loop ileostomy because after my first surgery I developed an abcess. It was so bad, I started to go septic...had rigors (turned blue and shook so violently and was so cold). They put me on oxygen and gave me something. I remember there were about six people standing over me. I don't remember anything after that until I came out of it. So, my doctor decided to do more surgery. Removed the abcess and did more corrective surgery that was ruined by the infection. After two weeks, I went home for only a month when my doctor said everything had fallen apart, probably from the infection still and had to fix everything again. He also told me I would need a colostomy. During pre-op, he mentioned a loop ileostomy which he said would be easier to reverse then a colostomy. My fourth surgery was on October 9 when he attempted to fix my rectovaginal fistula that just won't heal. He did a "Z" line which he said would hold together better. Well as of today, I still have my rectovaginal fistula. My doctor is as frustrated I. He is having me consult with his head surgeon and my husband and I are going to the Cleveland Clinic in December. Isn't life fun

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 11/27/2007 8:38 PM (GMT -7)   

I'm so glad you were able to see someone and get some answers, and esp get your leakage under control.  I just switched to using a convex insert in my wafer a few months back and it has also made a real difference for me.  Are you still going to Cleveland Clinic in December (just around the corner now)?

 


Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 11/28/2007 6:54 AM (GMT -7)   
Geez, I'm glad you found out what the problem was, but shouldn't your ET nurse or someone at the hospital have shown you to make sure both openings of your stoma are able to drain into the pouch? They should really have explained the loop surgery to you a little better, lol.

Sorry to hear about all your complications, fistulas can be a bear. I had an ileostomy for mine, and thankfully never had another rectovaginal, perianal, or pelvic floor fistula. Unfortunately if you're prone to fistulas you can get them anywhere, I've recently had an abdominal one, right beside my stoma. I hope Cleveland clinic can come up with a solution for your.

Good luck and keep us posted.
Judy
Crohn's Disease   
Too many surgeries, ileostomy6MP for maintenance.
 
 


Ohio43
Regular Member


Date Joined Aug 2007
Total Posts : 212
   Posted 12/4/2007 9:44 PM (GMT -7)   
Hi Vette Guy! Is that for Corvette? I didn't know they could give you medication for a fistula. Is this any type? What kind of medicine is it? Something you take orally?

Peggy and Judy, my husband and I saw another surgeon that my surgeon wanted me to see for a second opinion about my recto-vaginal fistula that does not want to heal. Because of the four surgeries I've had since June, he advised me to hold off on anymore surgery for another three months at which time he will re-evaluate me. So, I'm thinking I may wait until January instead of December 24 to go to the Cleveland Clinic, but on the other hand, I'm very anxious to get a "female" opinion. The last two surgeons I've seen have been men and they work together. What would you guys do? Let me know.

Judy, you would have thought someone would have mentioned the distal lumen to me, but none of the nurses did. I even had HomeReach nurses out to my home for two months, twice a day. I've seen three different nurses at the wound centers. One even has over 30 years of experience. Go figure.

Thanks! Mary

vette guy
Veteran Member


Date Joined Nov 2006
Total Posts : 650
   Posted 12/4/2007 10:35 PM (GMT -7)   
Hi Ohio43-Yes, I have a couple of Corvettes now and I've owned several over the years. I've been in love with them since I was a kid. Now about your question.....in my house the "F" word stands for fistula. Before I had ostomy surgery I had at least a dozen fistulas on my butt. The pain was incredible, especially as they were forming. But it was a fistula between my rectum and my bladder that eventualy required the need for a permanent colostomy back in '89. Due to Crohn's it was later turned into an ileostomy in '04. In '89 to try to close the fistulas they put me on flagyll(I don't think that's the correct spelling) and various other antibiotics. Though that worked for some people, it didn't work for me. Then in '04 I developed 3 fistulas that protruded through my abdomen. That's right...through my @#$%%$ stomach!!! The pain was the most I've ever experienced. They tried to close them with Remicade. I had to wear 2 appliances for 8 months; one for the ostomy and one to collect everything that came out of the fistulas. It was really gross. Though they showed some signs of improvement, they never completely closed, plus the doctor said that there would be no guarantee they they wouldn't open up again in the future. So, after 8 long months of being in constant pain, and hopped up on pain killers, I said "enough is enough." They converted my colostomy to an ileostomy and took out the remaining large intestine. I only wish I had an ileostomy instead of a colostomy 18 years ago because I find it more predictable, less noisy(almost silent) and easier to manage.
I hope things work out for you.

JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 12/5/2007 10:21 AM (GMT -7)   
Okay, please correct me if I'm wrong, but it sounds like you don't have (or don't know about) any disease process that could have caused the fistula like Crohn's disease, correct? Your surgery was done in hopes of correcting your recto/vaginal fistula that you believe was caused by child birth years ago, correct? The surgeries haven't worked and have just caused complications so far?

The reason I'm asking is because if you have no disease process causing the fistula, the medications mentioned probably won't help. If you have a fistula because of Crohn's disease, there are a few medications that may help to close fistulas in some patients. Imuran, 6MP, and Remicade come to mind, but I believe the reason they help is because they help the disease process which is the real cause of fistulas in these people.

If you have a fistula because of trauma (like childbirth), then likely the only way to fix it if it doesn't heal on its own is through surgery. It sounds to me like you've been trying to have it "fixed" for a while and have had many complications. Have your doctors tested you to rule out disease in light of all the complications?

The "cause" of your fistula will be the determining factor in what may work to close it.
Judy
Crohn's Disease   
 
 
 


Glad Bag
Veteran Member


Date Joined Mar 2007
Total Posts : 699
   Posted 12/5/2007 11:15 AM (GMT -7)   
Vette Guy, I think I have heard your history before, but the more I listen to you, the more I want to get my whole colon out of my body!

I too had my surgery because of a fistula to my bladder (maybe not my bladder, but it connected to somewhere in my urinary system, they could never find the connection, but it was there....oh yeah, it was there)

I am still having problems with my peril-anal fistulas and I don't want to get colon cancer one day, and I just want these darn things to go away!

Since you had your colon out, have things been completely better?
"All we need is love....love is all we need"


JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 12/5/2007 11:32 AM (GMT -7)   
Glad Bag, what is your diagnosis? UC or CD? You know a full colectomy is not considered a viable treatment for CD unless the entire colon is diseased and not responding to medications. Of course fistulas are pretty rare in UC only, and some doctors think that a diagnosis of UC with fistulas will eventually show to be CD, so bowel sparing surgeries are really the best option for fistula treatment.

I had a large portion of my colon removed when I had my first ostomy because of numerous fistulas. Over the years I've had a few more sugeries that took more each time and now have an ileostomy. Believe me when I say how scary it is to know that the amount of intestine you have left is gettting smaller and smaller. So while I know you want to do what it takes to heal your fistulas, you don't necessarily have to remove the entire colon.
Judy
Crohn's Disease   
 
 
 


vette guy
Veteran Member


Date Joined Nov 2006
Total Posts : 650
   Posted 12/5/2007 12:01 PM (GMT -7)   
Glad Bag said...
Vette Guy, I think I have heard your history before, but the more I listen to you, the more I want to get my whole colon out of my body!

I too had my surgery because of a fistula to my bladder (maybe not my bladder, but it connected to somewhere in my urinary system, they could never find the connection, but it was there....oh yeah, it was there)

I am still having problems with my peril-anal fistulas and I don't want to get colon cancer one day, and I just want these darn things to go away!

Since you had your colon out, have things been completely better?

Hi Glad Bag- They were not able to remove my rectum due to excessive bleeding, and it is diseased with Crohn's. Therefore, I go for Remicade every other month to keep the sypmtoms at bay, the main problem being pyoderma gangrenosum, a skin condition which has a connection to Crohn's and UC.  

Glad Bag
Veteran Member


Date Joined Mar 2007
Total Posts : 699
   Posted 12/5/2007 2:44 PM (GMT -7)   
Thanks for the feedback Vette Guy and Judy...

Judy...I totally understand the need to preserve my colon as much as possible. In fact, most of my colon is pretty healthy, with the disease activity focused in the lower end of the colon and in the rectum

it just seems at this point the rectum definitely needs to go...if they can get it out without killing me (sorry they couldn't fix it all Vette guy)

maybe they could take the rectum out, and the bad part of the colon, leave my ileostomy where it is, and then just leave the rest of the colon in there in case i need it later? for now, though I have never had disease activity in my small intestine....maybe it's wrong of me, but I feel like my small intestine will be ok, as long as I get the bad parts of my colon and rectum out for good...

such is the inner workings of a Crohnsdiseased mind..............
"The things that make us feel so abnormal, are actually the things that make us all the same" - from PostSecret: Extraordinary Confessions from Ordinary Lives - by Frank Warren


Ohio43
Regular Member


Date Joined Aug 2007
Total Posts : 212
   Posted 12/6/2007 5:39 PM (GMT -7)   
Vette Guy and GladBag, I'm so sorry to hear about all your complications. I hope to God I never develop Crohns or UC. My doctor(s) believe all of my problems persisted from childbirth, but I can't understand why this fistula I have does not heal. My doctor also believes that the huge abscess I developed after my first surgery is what has caused all these systematic problems.

Vette Guy, why is a colostomy louder than an Iliostomy? I would have thought the opposite.

Ohio43
Regular Member


Date Joined Aug 2007
Total Posts : 212
   Posted 12/6/2007 6:02 PM (GMT -7)   
Judy, after I had my baby in June 1986, I developed an infection several days later. I kept telling my doctor that something was going on down there, but he just kept telling me that it was my uterus contracting. I finally convinced him that I knew something was not right. I was put on an antibiotic and sent home after 6 days. That same night I went to the hospital because I had stool coming through my vagina. I was scared to death. I was checking the area because during delivery, I was given an episotomy and tour really bad. I also believe I picked up something from a "community" cycst bath the hospital had women sit in after deliveries. I don't believe it was cleaned well. So, over the past 21 years, it seemed to heal. I didn't seem to have stoll coming through after the first few weeks and no gynocologist has ever mentioned that my vagina and rectum were too close. But, I did start getting incontinence (which I thought only had to do with urinating). My fistula was not the only thing I had wrong. I just had a very thin layer of tissue separating my vagina and rectum, I had nerve damage and muscle damage as well. Every night I do kegal excerices to strengthen ALL the muscles down there. My doctor said the muscle and nerve repair seem to be intact. So, hopefully the fistula is all that left

I can see why having an ileostomy would be a life-saver for many people. Unfortunately with me, I have extremely sensitive skin that EVERYTHING causes a reaction. My skin has been raw pretty much since it was put there July 23.

I saw an infectious disease specialist who ran blood tests on me to see if my immune system had something funny going on, but he found nothing.

Is there a separate or special test for Crohn's?

Mary

JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 12/9/2007 12:22 PM (GMT -7)   
Ohio,

I'm so sorry you're having so many issues, and to top it off you're sensitive to most of the ostomy products, sometimes you just can't win, sigh.

I think you would have shown signs of Crohn's if you had it, and hopefully your doctor would have picked up on it. Diarrhea, stomach pains, constipation (yes sometimes D sometimes C), elevated WBC, elevated C diff, blood in stool, mucousy stool, and list could go on and on because it's different for everyone.

Unfortunately, unless you have a disease (which truthfully I don't know of any others besides CD) that's likely to cause fistulas, medications probably won't help you and surgery is your only recourse. Even if you do have CD, medications don't help all patients, and surgery is sometimes necessary (like for me).

Of course, medicine is an inexact science so anything is possible. There is a new test that shows a high percentage of accuracy for diagnosing Crohn's disease and/or Ulcerative colitis and it's made by Prometheus. And there's always the possibility that you could have this disease (I really hope not for your sake) and not have any symptoms yet.

I hope you can find a solution that not only gets rid of your fistula, but will also make your life easier. Good luck and keep us posted.
Judy
Crohn's Disease   
 
 
 


Dancerpeg
Regular Member


Date Joined Dec 2007
Total Posts : 43
   Posted 12/27/2007 1:04 AM (GMT -7)   
Hi Vette Guy,
You are the first that I have heard that has the same complication as my husband to CD. He also has pyoderma gangrenosum after his second surgery it took months for that to heal up. Right now we are dealing with 2 fisculas that tunneled to his back from his small intestine. He had a total bowel removal back in 94' and 01'. So what did heal your fiscula if it wasn't Remicade? We need help to get my husband back on his feet. He's been down since the being of November. If you need anymore info on him I will let you know anything so he can be whole again. Thanks Dancerpeg
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