Emergency Surgery for Rare Fistula Post-Ileostomy: Seeking Advice

Replies
23
Views
1026
DiverticWilos
May 20, 2023 2:06 pm

Hey everyone, I've had my ileostomy for almost three months. But I've developed a complication that, from what I can find, only develops when the colon is resected while in active infection. It's a fistula. Now I can find a ton of info on fistulas online. What I can't find is the type of fistula I have apparently developed. It's from my resectioned colon to my rectum. My original surgeon has asked me to get a second opinion and stated that he doesn't understand it and has never seen anything like it and doesn't feel comfortable performing my reversal. Has anyone else developed fistulas as complications? What was done about it? And more specifically, has anyone developed the one like I've got cause I can't find any info about it at all. You can view my profile for complete details of what I've had to go through. Thanks in advance!

CrappyColon
May 20, 2023 4:25 pm

Feel like making a consult with Cleveland Clinic? Your doctor could request a referral. I know they have a location in FL which would be closer to you, but I was told if I had tried to go on vacation (FL) last year they would've flown me up to Cleveland to operate if my condition changed while there.

Gray Logo for MeetAnOstoMate

Why Join MeetAnOstoMate?

First off, this is a pretty cool site with 33,973 members. Get inside and you will see.

It's not all about ostomy. Everything is being discussed.

Many come here for advice or to give advice 🗣, others have found good friends 🤗, and there are also those who have found love 💓. Most of all, people are honest and truly care.

Privacy is very important - the website has many features that are only visible to members.

Create an account and you will be amazed.

w30bob
May 20, 2023 11:28 pm

Hi Diver,

I've had a number of fistulas over the years, but none recently. When they disconnect your colon, they can disconnect it anywhere along the length, depending on the reason for the colostomy. The colon that remains unconnected, but still connected on one end to your rectum, is simply lying there in place, but decompressed. A fistula can occur wherever two loops of bowel touch each other, or in your case where your deflated colon rests against or touches the rectum. I don't know if they have a specific name for that, but it's not uncommon for sections of touching bowels to form a fistula. From what you describe, I'd suggest you get the hell out of whatever hospital and group of doctors you're dealing with... and get to somewhere good. I'm not sure where that would be in Alabama, but University of Alabama at Birmingham and USA Health University Hospital in Mobile are the two that Google says are your best bet. Sorry I can't help more.

;O)

https://health.usnews.com/best-hospitals/area/al/university-of-alabama-hospital-at-birmingham-6530304

https://health.usnews.com/best-hospitals/area/al/university-of-south-alabama-medical-center-6530600

DiverticWilos
May 21, 2023 2:21 pm
Reply to w30bob

Holy sheet Bob! You just provided me with more info than I could find on Google. You knew more about this than my surgeon did! I just called him a couple of days ago concerned about a blockage, and he acted like he didn't know anything about that. Thanks for that, my guy! I've got an appointment with a specialist, but it's in the same hospital as my surgeon is. I went to UAB ER, they wanted to admit me and they wanted to put a drain in for the fluid I had developing on my right side, but contacted my surgeon and he said nah, so they said I needed to go see him. That fluid developed into a fluid abscess in my pelvis that has walled itself off, and antibiotics can't reach it, and they have to remove it by surgery now. Who should I contact at UAB?

w30bob
May 21, 2023 7:17 pm

Hi Diver,

Well... I can't speak for any of their docs, as I have no experience with them, but here's what I'd do. Call their Gastroenterology department... the operator will send you over to them when you call if you ask. There, ask the person on the phone who the Head of the Gastro department is. Then get an appointment with that person as soon as possible (unless they aren't seeing new patients). When you see them, ask if the Gastro department operates as a team, meaning do they review their cases each week as a group to see if they're assigned to the right patients. Most large hospitals' Gastro departments do that to make sure they're using their resources the most efficient way possible. If they say no... then ask them how you get to the right doctor for your issues. Be blunt here, screwing this up will put you right back into a world of hurt. If the Head of the department isn't available, look at the list of Gastroenterologists in the link I posted above and find the one with the most experience in that specialty. If that's who you see, ask the same questions... how will you be sure you're seeing the best doctor they have for your problems. Also, when you get there for your appointment, an associate will bring you into the exam room and ask you a bunch of questions while entering all your data into the computer. Ask him/her the same questions. Is the doc you're about to see an expert in what your issues are? Ask them who else in the Gastro group is good at what you're being seen for (say in case you want a second opinion). Squeeze every last drop of info out of them, because you're interviewing them, not the other way around.

Back a million years ago, I had an abscess in my pelvic area that I thought was a bowel leak. The pain was a bit much, if you know what I mean. After waiting for a bed to be made available at Hopkins, that never seemed to materialize, I did a road trip up to the Cleveland Clinic. Those folks were wonderful. It turned out to be a psoas abscess and they simply stuck a drain in it and sent me back home. It was instant pain relief. All was good until I caught the end of the drain on the depth control lever on my tractor as I hopped off. The drain was instantly removed and I must have looked like an idiot trying to stick it back in. Long story short... an abscess in that area can be really painful... or worse if it pops and causes sepsis. So don't delay in getting some treatment. And let us know how it works out.

;O)

 
Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister
DiverticWilos
May 21, 2023 7:38 pm
Reply to w30bob

The pelvic abscess can't be accessed to put a drain in without surgery. Multiple CT scans show that. They can put a drain in through my butt muscle but this will hurt a lot and be very uncomfortable. I've been on antibiotics since Jan lol and my WBC is about 13k. Thanks for the info Bob!!

Charlyne
May 22, 2023 6:00 pm

Someone replied to go to another group of doctors. I totally agree. I have had a fistula and the situation needs to be resolved quickly. My surgeon is Dr. Grimm who is affiliated with USA Hospital in Mobile. He is wonderful. Beyond excellent. Please don't fool around and let this go on. I'm not trying to frighten you, just to impress you with the urgency of the situation. I actually found Dr. Grimm through a referral for a second opinion myself. He is an awesome surgeon and has taken really good care of me. I'm doing great now and thank God for putting me together with this man. Call me if you'd like to talk. 2518951092.

yaya
May 22, 2023 6:30 pm

I'm sorry you're going through the fistula nightmare. Argh. I had a colectomy and a J Pouch after, I developed an anal to vagina fistula. It was the worst. I had surgeries to close it, webbing and such, but nothing seemed to work. Having poopie come out of your vagina is not fun. It's just not right.
Finally had the reversal changed back to an ileostomy. That stopped the madness and did the trick. However, I'm an ileostomy girl forever. Will never go back. Whew. Best of luck. I would think twice about having the surgery for reversal. It wasn't worth it for me. Everyone is different. My hell hopefully will be different from yours. Take care.

Renfromtexas
May 22, 2023 9:30 pm
Reply to w30bob

Oh my!!! When I had my reversal, I had caught my drain tube on the bathroom door knob... Holy shit, that hurt, but it didn't come out. Thank God.

DiverticWilos
May 23, 2023 3:36 pm
Reply to Renfromtexas

I kept dropping mine and it hurt like hell when I did. I'd forget about it and go to stand up from the bed and oops there it went just dangling lol. My wife made me a makeshift holder out of pantyhose that worked great! When we went to the doctor, he wasn't impressed and said, "Why didn't you just use a lanyard?" lol. I thought her invention was great though!

DiverticWilos
May 23, 2023 3:44 pm
Reply to yaya

That is a tough one! It's been burning like hell when I piss, but not like urinary tract infection burn, it's a different kind of burn and lots of pressure on my bladder. They ran tests on my urine last ER trip on May 8th and it was normal.

The mucus used to be clear coming out of my rectum, then changed to bloody then to brown, like real poop coming out. And it stinks really bad. Like the poop that comes out of my ileostomy doesn't smell at all, but my rectum mucus stinks!! Is that the same for everyone?

I'm on amox-clav 875 125 and have been for like 3 months. But my WBC stays around 13k to 15k. It got as high as 19k and no fever at all. I never run fevers; my body temp stays around 96 but I've been getting up to 99 here lately.

DiverticWilos
May 23, 2023 3:55 pm
Reply to w30bob

Bob, I've been accepted into UAB by the best colorectal specialist they got there! I called and was told to have my paperwork sent over and they will notify me if they decide to accept me. I had my paperwork sent yesterday and got a call this morning. They said the team was intrigued by my complication and wanted to see me, specifically Robert Hollis IV, their top guy under the director. I feel so much relief now. My appointment isn't until June 20th, but I really felt like my surgeon was going to kill me again, or at the very least cause me a tremendous amount of pain or give me more complications. Thanks, buddy. I'm so glad to be getting away from this hospital! I previously had an appointment with a specialist there but felt like I would still get handled and lied to because, like my wife said, it's like a frat of brothers and they will take up for each other. I've also got an appointment with a pain clinic on June 8th. Man, I hope I can get some relief. This fistula is just stabbing pain all the time, and if it's not stabbing, it's throbbing. I've gotten to where I appreciate the throbs because it gives me a break from the stabs.

CrappyColon
May 23, 2023 4:15 pm

Hey, I know I'm no Bob, but when you scheduled, did you ask to be put on a waitlist if someone canceled? If you called back and explained the pain and asked about a waitlist, I'm wondering if they can get you in sooner.

Redondo
May 24, 2023 6:15 pm

I had my ileostomy in 1973 after they removed my total large colon, rectum, and appendix due to Crohn's. After I had the surgery, I had a perianal fistula. I was going into the hospital for the surgeon to curate the area. It was very painful. This was in Toronto, Canada. The surgeon instructed me to have 3 sitz baths per day, which gave me some comfort and eventually it closed up. Six years later, I had to have another abdominal surgery to remove pelvic cysts. The perianal fistula came back. Subsequently, I moved to LA. Surgeons at UCLA said it must be internal and wanted to perform extensive surgery where they wanted to open my abdomen and said they would perform almost like plastic surgery on the inside. I consulted by phone with my Toronto surgeon, and he warned me not to let them do anything and to go back to sitz baths. After I did that for several months, it eventually healed over, and no surgery was required.

A couple of important notes about this: 1) Be careful what surgeons recommend doing to you. Sometimes, I have found that they can be cutting happy and not in your best interest. It's good that your surgeon is sending you for a second opinion. Go for a 3rd and 4th and listen to your gut for what you do. 2) The surgery that you had was intense and significant. It usually takes the body at least a year or more to heal. Yours has been fairly recent. I didn't see what problems this fistula is causing you or why you had to have your surgery in the first place.

Best of luck to you, and I hope this helps you somehow.

Redondo
May 24, 2023 6:25 pm
Reply to w30bob

Wow! I never put it together until your story here. I developed 2 large pelvic cysts a few years after my colon was removed. Initially, MRIs thought I was pregnant in the fallopian tube or I had ovarian cysts. They were quite painful. I went back to my surgeon who reopened me at the same site as the original surgery and removed the cysts. They were not ovarian and they were just sitting in the pelvic area. Now, I see that it was probably as a result from the initial surgery.

This site is a wealth of information. I appreciate your input. Thanks.

w30bob
May 24, 2023 7:03 pm
Reply to CrappyColon

Well... just shave your head and grow a couple feet, or three, and you'll be just like me!! I don't think your hubby will be real keen on that idea, so please think it through first!

;O(

w30bob
May 24, 2023 7:04 pm
Reply to Redondo

Hi Re,

It is a great site! Thanks to all those who make it so!!!

;O)

YankeeMagnolia68
May 24, 2023 8:55 pm
Reply to DiverticWilos

I'm going to throw my 2 cents in here as I've had way too many abdominal surgeries. Docs get nervous with me because of that. Anyway, you may want to find out who is the head of colon-rectal surgery. When I saw the colorectal surgeon (who did major surgery on me in 2016) in 2021 for a severe parastomal hernia that developed, he referred me to another colorectal surgeon in the group. This "new/other" surgeon specializes in complicated abdominal/colon-rectal surgeries (a lot in relation to oncology). A surgeon like that may be more helpful for you.

The hospital I was using is a teaching hospital. I think that makes a big difference in the level of knowledge and ability to get treatment of non-textbook cases!! I'm not sure if you're closer to GA, MS, or TN....or FL (Mayo @ Jax'ville would be a good place to go). Also, insurance benefits/coverages and allowances/limitations are something that you'll be taking into consideration....like are you limited in seeking treatment outside of AL? Also, does your insurance offer a "nurse case manager"? If so, he/she would be very helpful in guiding you through getting you the help you need.

I have a lot of insurance knowledge and willing to do whatever I can to help you....just message me. I hope that I helped some. You'll be in my thoughts and prayers!

Suzanne

CrappyColon
May 24, 2023 8:56 pm
Reply to w30bob

You know when you read that and can't remember the context it's really confusing. I got out of my vehicle today and it was next to a really big truck, you know when someone puts big tires on their truck like they're trying to compensate for something? My shoulder didn't even come close to hitting that mirror. Until the bruise goes away I'll be very aware of truck mirrors. I'm trying to remember what my husband said when I came home with purple hair last year, it was my son that had the bigger reaction. I'm good with being fun size, the middle seat on an airplane doesn't bother me. &zwj

w30bob
May 25, 2023 12:59 am
Reply to CrappyColon

Crappy said, "My shoulder didn't even come close to hitting that mirror."

But I bet your head did! You poor thing. Yeah, fun size is cool. And I guess the airlines figure 1 in 3 is fun size too! I'm glad someone likes sitting in the middle seat. And for the record, I bet you look great with purple hair... that way the tall people can see you coming without having to look down!

;O)

CrappyColon
May 25, 2023 2:09 am
Reply to w30bob

Thanks for the frame of reference, very much appreciated Bob.

Sometimes I change my hair color for a purpose like with the purple or I do some pink/rose gold in October since my mom had cancer. Most of the time it's whatever I feel like. I asked my husband if he liked my purple hair, he said sure and listed off a few more colors. When I told him he left out my natural hair color, he thought it was hilarious.

There's a difference between 'I like' and 'it doesn't bother me'. Most of the past decade getting sandwiched between 2 others on a plane meant my kids because those 2 cannot sit next to each other. I still remember this one flight I cursed myself for being a nice person for offering to take the middle seat. I was so squished.

w30bob
May 25, 2023 7:47 am
Reply to CrappyColon

I'm glad you clarified that, as no one likes the middle seat on a plane. I was getting worried about you.

:o)

CrappyColon
May 25, 2023 4:31 pm
Reply to w30bob

'

debbinmiller
Jun 22, 2023 1:01 am
Reply to yaya

Had the same fistula, from my vagina to my colon, not fun! Now I have a second stoma for this fistula for mucus output. I also have a fistula to my rectum, but my surgeon isn't planning on doing anything as long as it's not giving me any problems.