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Leak at the anastomosis? So lost and scared

MandiePandie's picture
MandiePandie
Posts: 84
Joined: Dec 2020

Im sorry I havent replied to anyones posts yet, I read them but we are on a roller coaster now with my dad. 

Has anyone had a problem with a leak at the anastomosis after their resection? My dad has been back in the hosptial for 4 days now. His bowel resection was on 1/20, came home on 1/22, went to the ER on 1/24 because he had some intermittent fever, pain, a full feeling in his stomach, pressure/pain in his rectum as if he needed to use the bathroom but couldnt, and swelling in his groin. 

A CT scan showed two pockets of infection, one behind one of incisions and another in the colon. Radiology said that the infectious area in the colon seemed to be at the site of the surgery (I assume anastomosis) and said they they had "no safe window" to access it (I guess sometimes interventional radiology can go in and drain or fix it? I dont know). So it seemed radiology said he would need to go in for surgery again. The surgeon said no, the infection was a "few slides above" where the surgery was and admitted my dad to stay no food and IV antibiotics. Well he did fine for some days, the full feeling went away, no fevers, no pain or rectal pressure, his WBC came down. Yesterday they started him on liquid foods (broth and popsicles and juice) and oral antibiotics. He had a few bowel movements last night. No pain, although he woke up from a nap with a tingling feeling around his mouth and in his arms and he said he felt like his heart was pounding. They checked his vitals and said everything was fine so they gave him something for anxiety. He slept well. 

 

This morning his WBC count is elevated again (from a normal 10 yesterday to a 15 this morning). He is DEVASTATED, crying. It is killing me. I called the hospital to beg if my mother can go see him, even just for an hour. What do we do? 

 

The surgeon hasnt met with him again but shes not very kind at all. We literally do not know what this could mean. No one is telling him or us where it stands, what the options are. 

 

Please, does anyone have any insight? 

abita's picture
abita
Posts: 1067
Joined: Dec 2017

Do you have a Medical proxy document for your Dad? I believe if you get that, they can speak to you about his case. I mean, they should be telling him more, but they might not be telling you or your Mother because of HIPPA rules. I was so out of it in the hospital, and it was good that my cousin had the medical proxy and could get the answers I needed.

I have no insight into your father's circumstances right now, but I was in the hospital with an infection. Mine was massive, and excruciating and why I went into the hospital and finally had my cancer diagnosed. My insides were filled with infection, so I did have one of those drains you mentioned. Anyway, the point of telling you that, was I feel like I had 5 depts looking at me. One was the infectious disease or whatever. I understand how frustrating no information can be. It is possible that other teams are looking into the infections. I would say, call the hospital, and find out exactly who can tell you what is happening with your father's case. Or have your father get the name, and give to you. Then contact them. I get how cold they all seem sometimes. At least if you have the right person, maybe you can get answers.

MandiePandie's picture
MandiePandie
Posts: 84
Joined: Dec 2020

He has allowed them to share with us so its not an issue of HIPAA. Just an issue of his surgeon being a few words that are too impolite to write down. 

Dad actually has an infection now. The surgeon let him sit with it for 4 days in the hospital even though the radiologist at the ER we brought him too said that he needed surgery, she disagreed and didnt rescan him until 4 days later. 

Now my dad has an ostomy and will be seeing the infectios disease team. He is so scared but im so glad you shared with me that you went through it to. What was the drain like? I assumed it would be put in through surgery right? 

abita's picture
abita
Posts: 1067
Joined: Dec 2017

My drain was put in by radiology. It came out my middle side. I had so much infection though that it was killing me. It was so massive that it blocked a scan being able to diagnos me. I am thinking I didn't get it immediatley though. I think I had to wait for a time slot to open up. The drain was a bit painful for me. 

I was in the hospital for 19 days. I saw a lot of nurses. Two were awful. One I still refer to as Nurse Ratchett. BUT, every other nurse and nurse's asst were so kind and did so much for me. And when I went back for my liver resection, some visited me to tell me how happy they were that I had made it and looked so good. Nurses are angels on earth. 

Not really about this topic, but interestingly, the nurses always know that a surgeon put my chemoport in because surgeons put them in the left side, radiologists put them in the right.

Annabelle41415's picture
Annabelle41415
Posts: 6715
Joined: Feb 2009

Isn't it something that surgeons always do something totally different than the way most of the ports are put in.  An ostomy nurse marked me for my ostomy too, because the surgeon sometimes will put it anywhere not realizing it's on your pant line.  I'll never forget the time when asking about putting an appliance on my ostomy and my surgeon had no clue how to answer me.  He was the best doctor during my treatment though, so he got a pass.

Kim

abita's picture
abita
Posts: 1067
Joined: Dec 2017

My surgeon was also my diagnostician, so he definitely gets a pass. He was so kind. They finally saw the mass on a Friday, so my surgery was scheduled for a Monday. He came in on his day off on that Saturday to let me know he was going to save me and why I had a good prognosis. I was diagnosed at stage 4, and yet have always felt I will make it, even through the hardest times, and I know it is because of him. I always refer to him as the man who saved me. And yes, i consider being on chemo, maintaining stable, since I had a recurrence, as saved. I have hard days but I am so happy to be alive and living each day.

Helen321's picture
Helen321
Posts: 1428
Joined: May 2012

It's all pretty painful and uncomfortable for a pretty long time. 

Helen321's picture
Helen321
Posts: 1428
Joined: May 2012

It's all pretty painful and uncomfortable for a pretty long time.  I had the drains.  Most people say they don't hurt, I found mine excruciating.  They're just thin. long plastic tubes in your body through holes in your skin and they lead down to a fluid collector. I was so glad to get those out.  I was pretty much crying every day. The second they took them out the pain in that area stopped.  I have an ostomy now, I had a full APR and the pain was the worst thing I've ever experienced, worse than having kids.   I was in horrific pain for 2 years after my surgery.  My doctor told me it was mental.  My doctor was wrong.  They finally figured out that my uterus was prolapsed and I was sitting on it.  Doctors are just people, they are often wrong.  Some of them just aren't good listeners.  Be very vocal until you are heard.  If one doctor says he needs surgery and one said he doesn't need surgery, you ask for a third doctor and if need be, move hospitals if you don't feel they are making good choices.  You can also ask to speak to the head of the department and contact a patient advocate.  It's all very stressful so keep your head up and be pushy!  You are your father's voice in this, be powerful to get him what he needs.  Cancer is very scary.  He's basically right on track with the panic attacks and feelings.  I do recommend getting him anti anxieties if he needs them.  I got one that doubled as an anti nausea, I'm pretty sure it was Ativan. It got me through the hardest time in my life and I had no nausea which was a plus.  This is the one time in your life where drugs are really important to take.  Be careful with pain killers though.  I was getting very addicted but thankfully I recognized it.  Every other week basically you feel like you have the flu with chemo, radiation burns until you are screaming in pain and biting a towel every time you have to go to the bathroom. I remember crying hysterically just because I had to go to the bathroom.  It's all scary and it's okay that you're all scared.  Your feelings are understandable and valid.

Tueffel's picture
Tueffel
Posts: 304
Joined: Feb 2020

First calm down! Your dad had no high risk surgery and even though he has some setbacks now, they are unfortunately common. Colon surgeries or any gastrointestinal surgery is dirty, meaning at the end there is a high risk of infection especially. At the beginning it is scary but the moment tve right antibiotic in the right dosis is found everything will go back to normal. 

My dad had also an infection after the colon surgery. He was 48h at home. Fever and MS is not nice together. His whole body was paralyzed, we had primary doctor and ambulance. All were worried but the painkillers and antibiotic helped. My dad said to the surgeons why they did not do it properly after we found out that it was a wound infection.  

First of all, the inflammation area is probably close to the anastomoses, you could drain it or puncture it but it is probably nlt safe enough. The risk that a vessel might be punctured is too high and luckily for your dad the vessels seem to be fine. Otherwise, they would really need to open him again and close the vessels. This seems just based on what you described not the case. Ask how his hemoglobin is. If it does not fluctuate, there wont be any bleeding. 

Most likely the oral antibiotic is not good for him. Maybe the inflammation area did burst (was like that with my dad and the liver surgery) but then a surgery is still not necessary. 

The whole thing is scary for you because you dont know what is happening. That is the doctors fault (and I am saying that as a future doctor). Neither you or your dad or mom seem to get proper answers or explanations. There should be time to explain what is now happening. 

I am sure your dad will soon be fine again! 

PS Does he have a catheter to the urinary bladder? If so since when? 

MandiePandie's picture
MandiePandie
Posts: 84
Joined: Dec 2020

I appreciate the reminder though really. And I read this post to my dad and it did help us. Although it didnt end up going to well for us. 

The surgeon finally did a CT with special type of barium/contrast after he was sitting in the hospital "not seeming sick" for 4 days, and she came in and told him that in 4 hours he will have an ostomy. 

He hadnt had a urinary catheter since 2 days the original post op. 

Anyway, no he has an ostomy and an infection in his colon. I dont know if its an absess, when I asked the surgeon if it was an open or closed leak, she barked at me that she didnt know what that was. I asked if it were possible to do a stent or some type of treatment instead of doing an ostomy and she said "its not a fistula, its standard protocol now to do an ostomy". And now thats what he has. Infectious disease should be seeing him soon. The surgeoun meantioned that a drain would be possible but she told my dad it would be done through the rectum, so maybe she means interventional radiology? I dont know. 

I thought the Stage IIIa diagnosis and chemo would be the hard part lol. I'm at that point now where so many things have SEEMED to go wrong that its funny but not in a ha ha way. 

Helen321's picture
Helen321
Posts: 1428
Joined: May 2012

Ooops I forget if you hit the button too many times it just keeps posting.

Helen321's picture
Helen321
Posts: 1428
Joined: May 2012

The standard is an ostomy.  SMH  I am still mad that they gave me a permanent ostomy under anesthestia and I would have said no.  That's their go to.   If you find that a doctor makes you uncomfortable, it is okay to ask for a different doctor.  I faced the same type of wall when I was dealing with doctors.  They think you have no right to ask questions or even read about the disease, but you do! The whole process is new to you and hard to follow.  Heck I didn't know what cancer actually was when I got it.  I was a little surprised by how simple the concept is of cells not dying.  .... You can pretty much drain a body anywhere.  You literally put a hole in the body, run a tube in and it drains.  I had 3 holes in my sides with tubes and little plastic things hanging off with fluids coming out after my surgery.  I had never seen those before so I had no idea that existed.  Literally they were hanging there.  At least it's a temporary ostomy, that's a great thing.  I'd take that any day over a permanent one.  The stuff you are experiencing is normal, hang in there.  A lot of things do go wrong with cancer, deal with one step at a time try not to lump things together. Someone once said to me in this group...cancer is not a death sentence, it's a disease, deal with it like you would any other disease.  It's true, deal with it one step at a time.  It's very painful, very stressful, and your emotions go up and down, that's okay.  As I mentioned earlier, ask your dad if he needs anti-anxieties.  You may need them also at some point.  Stress is a perfectly normal part of this whole process and it can take over.  Treat the stress like you would treat a headache, with very temporary meds to eliminate it so you can focus on the bigger things.

abrub's picture
abrub
Posts: 2175
Joined: Mar 2010

I had surgery this summer to remove a tumor outside of but very near my rectum.  My surgeon nicked my rectum, and a few days after going home, I was back in the hospital, first with drains and IV antibiotic, but then with a temporary colostomy to allow the nick to heal without stool passing by it.  I had my colostomy for 14 weeks, though my dr expected me to have it for 6 months.  However, I healed fast, and was showing all signs of good health, so he reversed me earlier than expected.

Please let your father know that the ostomy is the best way to keep the break/tear or whatever clean while it heals.  A colostomy is no fun, but hopefully in your father's case it is temporary, as was mine.  At 8 weeks out, I'm fully recovered in terms of eating.  My surgeon wants me to avoid strenuous activity for another 8 weeks, tho.  However, I feel fine.

Take a deep breath.  He'll get through this.

Alice

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