Anastomotic Leak after resection...desperate for help

[mharvey90]

Hey everybody.
Once again, I'm sorry I have not been active on the forum lately. I've been so sick that I have barely spent any time on the computer. But I'm so desperate for you guys to share some stories with me that may help me out.

I had a small bowel resection on May 20th. I found out a few days later that I developed an anastomotic leak that led to a nasty abscess and terrible infection. I had the drainage tube inserted to drain my abscess, which it did. But now, over a month and a half later, the leak in my intestines at the surgical site is STILL not healed. I just had an abscessogram done this past Wednesday (a contrast dye was injected into my abscess drainage tube, and it showed on x-ray that the dye entered the intestine, obviously meaning that the leak is still present.) I was on complete bowel rest for about a month (nothing but ice chips) which STILL didn't heal it. So now, my surgeon decided Wednesday to put me on a low residue diet, to see how I get through the weekend. Now, my drainage for a couple weeks now has been very limited. No fecal matter, it's been mainly what my surgeon refers to as "normal abdominal cavity fluid"- which is basically just an orangish tissue-y type of liquid.

So I'm desperately wondering how many of you have had anastomotic leaks. If you have, did it heal on its own? And how long did it take to heal. Or, did you need surgery to fix it? How long did you wait before getting surgery?

Because my surgeon wants to keep waiting and waiting for it to heal on its own, instead of going into surgery. I start my junior year of college in late August, so I'm deathly afraid that I won't be healed in time to start... so I beg those of you that have had this problem to please please please share your stories...

 

[Keona]

Wow, Mharvey,
Sounds like you are having a difficult time. I dont have a story to share with you but August is still quite awhile away and lots can happen I am sorry the surgery caused so many problems. Do you have support where you live? Are you still in hospital?
I have read some people on here have had abcesses and stuff drained so hopefully they will read your post and contribute.
Take care and will be thinking about you. Let us know how you're doing.

Wendy

 

[dreamintwilight]

Hey MHarvey! Sorry to hear you're still experiencing some setbacks after your surgery!

While I have not had surgery or an anastomotic leak, I have had an abscess drained. I don't know if that is really the same or is comparable since yours is involving a surgery site. But, for me, my abscess healed in about a week on heavy doses of antibiotics and 12 days of clear liquids only. My drain also contained the "orangish tissue-y type of liquid" you described by the time they decided to pull the drain. They said there were no signs of a connection any longer.

I know my case is different because my body wasn't recovering from something traumatic like surgery. It was an infected fistula that turned into an abscess and that was how I found out I had Crohn's. Sorry I couldn't be any help, but maybe my story might give you a frame of reference for healing. Hopefully some others will have more relevant stories for you!

 

[Guest]

hi mharvey - so sorry to hear how things are with you just now

i do actually have experience of both of these aspects - i've had a resection that didn't heal, and after a different operation, a pelvic abcess.

both times i required surgery to sort the issues out - but i think my body must have been showing more serious signs of distress than you are because both times it was emergency surgery, and i was in a bad state.

i'm hoping that your leak-spot is only a tiny one, and that the surgeon fully expects it to heal naturally in time. just keep an eye on how you're feeling, and on your temperature, and if anything changes or worries you - tell someone at the hospital immediately.

good luck, & please keep us posted.

 

[Sue-2009]

Awe...I'm sorry! I wish you would heal quickly. Its got to be tough when you are trying to look forward to college. I don't have any words of wisdom...just a big hug! Sue

 

[poolside]

I'm sorry you are having such a rough time right now, I hope things improve for you soon.
I had an abscess one time from my rectum and it burst on it's own and drained for a while. It never did heal up, there is still a hole from it and it drains fluid if I am flaring, but it doesn't bother me or hurt anymore.
Good luck to you, feel better soon please!

 

[mharvey90]

hi mharvey - so sorry to hear how things are with you just now

i do actually have experience of both of these aspects - i've had a resection that didn't heal, and after a different operation, a pelvic abcess.

both times i required surgery to sort the issues out - but i think my body must have been showing more serious signs of distress than you are because both times it was emergency surgery, and i was in a bad state.

Thanks. Hope you don't mind if I ask more specific questions- for your resection that didn't heal...how long did it take for you/your surgeon to find out that it didn't heal, and how long after the surgery did you go back into surgery to have it fixed? It's been 7 weeks since my surgery...and my surgeon STILL wants to wait for my leak to heal on its own.......and I am growing so tired of sitting at home doing IV antibiotics 5x a day, and TPN for 16 hours a day, and flushing my abscess drain in my abdomen every single night. At this point I honestly just want to have surgery to get it fixed. I'm sick of waiting. I want my life back so I can enjoy summer, and start school in August.

Also, thanks to all of you for your kind words

 

[Crohn's 35]

Hey you, I still can't believe all these problems you are having. When I had infections from my second surgery the doctor would not admit it could of been his surgical procedure that did that mess. I has been awhile, August is just around the corner. All the antibiotics should be working by now. My sister had a problem and she had to get it drained and surgery to fix it. Then she healed. I am not suggesting anything either way, just my opinion I would get it fixed. Hope you get better sweetie! (((hugs))

 

[mharvey90]

Thanks, yeah the antibiotics are working well. I have not had a fever or increased WBC count since I started them over a month ago. (the types of antibiotics have been changed a couple of times.) I'm not sure if I would really blame my surgeon for all these complications or not. I'm not sure it's fair to place the blame on him since I was warned specifically of the risks of surgery, and was told that the Crohn's medications I was on (Humira & Imuran) put me at a higher risk. =/

 

[kenny]

Sorry to hear you are going through this. I had the same kind of thing happen but it was resolved in a different fashion.

I developed a leak associated with growing pain in the abdominal wall adjacent to the resection site. My Surgeon thought they might have damaged a nerve bundle that passes right by there and froze it to reset. However the pain came back. That was within 4 days after surgery. They would not let me go home until I could climb a flight of stairs under the watchful eye of the Hospital Physiotherapist. The pain was keeping me bent over and she refused to sign off.

They did a CT scan and it showed and Edema on the abdominal wall that they figured was trauma from the clamps that spread me open during the operation. They put in the drain tube, set me up with antibiotics and sent me home on low fiber diet.

I had a home-care nurse visit to ensure recovery was fine and to aspirate the drain. It was kind of old because I had the same thing for three months prior to surgery about 6 inches to middle. Me and the nurse were getting well acquainted.

4 or 5 days later the blood and puss stopped and GI material started coming out. I started going every two weeks to the IVR to have the dye injection and watch to see where it went. After two months of that they gave up hoping it would close and just pulled the tube. I was strong and feeling well. The thought was I could fight off the infection and with the aid of Immune suppression that leak would stop on its own.

It did.

The concern was the tube was keeping it open. With the tube removed the hole left might have become an open fistula on my belly but it closed almost immediately. I did not get any leakage.

8 months later and I feel fit and strong. I just wanted to share that with you to let you know that this can work out ok. I am sure our situations are not identical but, just like all the rest of this goofy disease stuff, you are not alone in this complication and it can be resolved.

keeping positive goes a long way to helping you heal and something else I was told during my ordeal. My positive attitude and understanding made the people working on me want to help me more. My GP told me that after chatting with some of the nurses on the floor when he came by for a visit.

 

[DoCBReeD]

Hey everybody.
Once again, I'm sorry I have not been active on the forum lately. I've been so sick that I have barely spent any time on the computer. But I'm so desperate for you guys to share some stories with me that may help me out.

I had a small bowel resection on May 20th. I found out a few days later that I developed an anastomotic leak that led to a nasty abscess and terrible infection. I had the drainage tube inserted to drain my abscess, which it did. But now, over a month and a half later, the leak in my intestines at the surgical site is STILL not healed. I just had an abscessogram done this past Wednesday (a contrast dye was injected into my abscess drainage tube, and it showed on x-ray that the dye entered the intestine, obviously meaning that the leak is still present.) I was on complete bowel rest for about a month (nothing but ice chips) which STILL didn't heal it. So now, my surgeon decided Wednesday to put me on a low residue diet, to see how I get through the weekend. Now, my drainage for a couple weeks now has been very limited. No fecal matter, it's been mainly what my surgeon refers to as "normal abdominal cavity fluid"- which is basically just an orangish tissue-y type of liquid.

So I'm desperately wondering how many of you have had anastomotic leaks. If you have, did it heal on its own? And how long did it take to heal. Or, did you need surgery to fix it? How long did you wait before getting surgery?

Because my surgeon wants to keep waiting and waiting for it to heal on its own, instead of going into surgery. I start my junior year of college in late August, so I'm deathly afraid that I won't be healed in time to start... so I beg those of you that have had this problem to please please please share your stories...

mharvey90,
So how long did this last before you where normal again?
How many CC's did it drain in a 24 hour period?

I recently had surgery 4 weeks ago, removed 8 inches of infected bowel. I was discharged from hospital 7 days later on Full liquids. 14 days after surgery we discovered that i had a leak as well and developed a cavity of fluid near my incision. I was again admitted to the hospital with a high level of white blood cells due to the infection of fluids. They placed a JP drain and PICC line for nutrition IV's. I was on bowel rest for 8 days then started Clear liquids following Full liquid diet. I was released from hospital again after 11 days with the JP drain. I am currently draining approx 40cc's in a 24 hour period.

Jeremy

 

[beth]

Jeremy, this is a rather old thread, and the OP hasn't been on since April. Try introducing yourself in our "Your Story" forum and ask questions there.

 

[DoCBReeD]

Jeremy, this is a rather old thread, and the OP hasn't been on since April. Try introducing yourself in our "Your Story" forum and ask questions there.

I can only hope he see's this and replies.

 

[glum chump]

Jeremy:

I had a similar experience to you and mharvey. I had a PERC drain in three different sites to take care of the post-surgical fluid, but unfortunately, the drains were put in wrong and perforated my bowels. After the drain came out, the fluid started draining from my incision site, and the nurses would put a dressing on it, but the fluid would leak out all over me any time I'd get out of bed. In total, I had almost two litres of fluid that needed to be drained, and they just let it all come out without putting any more drains in.

In order to assess how much fluid was left, I had several CT scans, and they aspirated the fluid several times to check for bacteria. I can't tell you how many CCs I drained at a time because my drains were messed up, but the two litres took about six weeks to drain out. The first couple of weeks were MESSY! After six weeks, I needed to keep putting a dressing on at the incision site for yet another eight weeks to collect the little bits that continued to come out.

I had a permanent ileostomy; while the fluid kept draining out, I was going about life normally.

Not sure if this helps, but it's my one cent...

Kismet

 

[DoCBReeD]

do you still have the ileostomy in place or has everything been corrected?

 

[glum chump]

I have the ileostomy---the surgeon had decided to leave everything where it is and see if that would work. Just to give you an idea, I am now at the 6 month mark since surgery, and I've finally stopped putting dressing on over the wounds. Its taken six months for the area to close and for there to not be any leakage from the site. Granted, the leakage was not significant (for the past couple of months, I was changing the dressing every two to three days), but it took a long time to heal.

Hope things are easing up for you,

Kismet

 

[DoCBReeD]

wow.. such a long time. What kind of diet where you one that whole time?

Today i have a CT scan followed by DR visit. my jp drain is still putting out but the incision has gotten better. it has been 6 weeks now since surgery.

 

[glum chump]

I followed the diet recommendations for ileostomies. The first six to eight weeks, I stayed on a low fibre diet, slowly adding stuff to the mix. By the three month mark, I had started eating pretty much anything and everything. Because I had been diagnosed officially with having 'wasting syndrome', the surgeon had told me that I needed 3000 calories a day, and to get as much protein as possible in order for the wound to heal. I was eating my meals, and supplementing with protein/calorie shakes that bodybuilders use. I had been drinking Ensure Plus while I was in hospital (I was in hospital for seven weeks post-ileostomy), but switched to the bodybuilders drink since it contained more protein. The protein really helped with the drainage.

At the six week mark, I was still draining pretty consistently. I was needing to change the dressing at least twice a day (they decided against putting in the jp drain since they'd ruptured my bowels in two different places with the drain).

I'm glad things are improving...try to give time a chance!

Stay well, Jeremy, and I hope your doctor gives you some positive news.

Kismet

 

[shamrock15]

I had the same issue with my 4th surgery - sutures tore through and everything was slowly leaking into my bowels. Of course this happened on a Friday, didn't get to see my surgeon until Sunday night. He wasn't impressed - emergency CAT scan, followed by surgery and a temporary ostomy for four months to let the bowels heal up. Not something I would want to go through again. Then had the joy of two drains, one on each side of my abdomen. 8 inch incision with staples on the stomach, drain on each side, ostomy bag and an ostomy that didn't need a bag (I know it sounds strange, but it is true and I have the scar to prove it!) Sleeping was pretty uncomfortable for about two weeks until the drains came out. My opinion, tell them to fix their mistake!