CSN Login
Members Online: 12

You are here

Fistulas & surgery, a little graphic

JanJan63's picture
JanJan63
Posts: 2066
Joined: Sep 2014

Once again I've ended up with an uncommon side effect that few people seem to get. How did I get so lucky? 

So, for the past year, since the sepsis, I've never really felt right. Nausea to varying degrees every single day. Weak, no stamina, just feeling miserable. I was beating myself up mentally for it. Thinking maybe I'd become lazy or something. Now I have an explanation for it all.

In February I went back on chemo. Two weeks later my entire crotch area was scalded from some sort of something coming out vaginally. I couldn't figure out what it was but it seemed a lot like what goes in my bag. I had to stop chemo because it was so bad. It eventually eased up but I still had this odd discharge and had to wear incontinance pads every day because of the amount and the inability to stop it.

A few weeks ago it started up again and all hell broke loose. I could barely leave my bed because it was a constant flow. I'd sit on the toilet for long periods of time trying to dry the area and get rid of whatever it was. As soon as I'd stand up it would come out again. And it burned. Like someone had poured acid on my crotch. It hurt to sit as well.

It got so bad I was sick as a dog and it was a contsant flow. I went to the hospital. They sent me to the hospital in the city and they did a ct scan. Every ct I've had for the past few years has been difficult to read due to the amount of internal adhesions I have. They decided I had a fistula that was allowing fecal material to get into my vagina. Lovely. I was scheduled for surgery asap. It would initially be exploratory and then they would fix what they found, if they could. Apparently fistulas are not always repairable.

The surgeon spoke with my daughter and I, she'd happened to be there when they whisked me off at 7 pm. He said he'd do his best but would just go in and try to fix it and get out. It would take an hour and a half to two hours. He was very kind and left both of us feeling like he'd be the one to fix me. It was reassuring in a time of terrible fear.

It turned out he worked on me for 6 hours. He took out as much of the adhesions as possible and made sure to remove the ones that had been choking off my kidneys so now my kidney values have improved greatly. He took out my bowels and checked them throughly for anything he thought might be an issue in future and ended up taking a section out. He looked for cancer because the cts had shown that I possibly had a new mass, there was none. And he fixed a total of three fistulas.

It turned out that a section of bowel had dropped down and grown into something below it and it had eaten away at and created fistulas in my upper vagina and colon. Uncommon but does happen.

I felt better from the minute I woke up. It's been a long couple of weeks since the surgery but I'm improving every day. I am now free from nausea and feeling stronger already. My two surgeons- the one who worked on me two weeks ago and my cancer surgeon- said I should feel a lot better than before once I'm healed and it should give me a new lease on life.

The other good news is that they don't think the cancer has gone to my liver as prviously postulated. And I wasn't full of cancer when they opened me up, which was another possibility. My husband and I had to have 'the talk' before surgery because they weren't sure I'd even survive it. It was a terrifying time.

So now I'm home and getting better every day. I am so thankful for my surgeon for going above and beyond to try to improve my life. They worked on me until 2 am when they could have been done by 10. He came to see me a couple of days after the surgery and just stood in the middle of my room grinning at me. Then came over and took my hands in his and we talked and I thanked him over and over. He said he was just doing his job. He's fabulous, I was so lucky.

Jan

 

abita's picture
abita
Posts: 434
Joined: Dec 2017

I am so happy for the outcome, and so sorry for the fear and pain you were suffering before.

Tunadog's picture
Tunadog
Posts: 215
Joined: Mar 2017

I’m getting out of three weeks of rehabilitation after 2 three week visits to ER and hospital.

Not the same as yours but something like it. Scary

Good to hear from you 

With Love

JanJan63's picture
JanJan63
Posts: 2066
Joined: Sep 2014

I hope you're doing much better. I'd love to get off of this roller coaster ride but I guess I'm in it until it's over. Aren't we all amazing for what we go through and just continue to push on? It's kind of reassuring to know how strong I am. Most people will never know that about themselves but we all do. People often say they couldn't go through what I have but the fact is they would have done it, too. What are the options? Lie down and die? 

Anyway, hugs to you!

Jan

Beachlace's picture
Beachlace
Posts: 37
Joined: May 2013

Horrible to go through.....but that's over!  You are stronger than you know.  Theres a special place waiting in heaven for that surgeon!

 

 

Kelley

JanJan63's picture
JanJan63
Posts: 2066
Joined: Sep 2014

Thanks everyone! I never thought I was tough in any way until I was diagnosed with colon cancer. Now I know I'm tough. My family doctor says I'm tough, tough, tough as nails. I remember a rehab nurse helping me after I was paralyzed with the blood clot telling me I had true grit. I am proud to overcome all these bumps in the road. I will not allow the cancer to make me a victim if I can help it. I much prefer to be a warrior. I'm hopeful that this will improve my life immensely. I will live with cancer and have a good life.

Love you all!

Jan

Twinzma
Posts: 156
Joined: Jan 2018

Jan Jan! I am so happy that they found your problem and was able to fix it. WONDERFUL news to about your liver! Sorry that it took so long for you, but thrilled none the less that you are renewed. Take care of yourself love! I pray for you everyday! 

Canadian Sandy's picture
Canadian Sandy
Posts: 386
Joined: Jul 2016

Sorry for all you’ve been through again. What a wonderful surgeon.

Ruthmomto4's picture
Ruthmomto4
Posts: 532
Joined: May 2013

i can’t believe you had to endure another horrible medical situation, how scary and just horrible that must have been. I can only think that at least you are going to start to feel better, that’s all I have been hoping for you. it broke my heart to know you felt so poorly all the time. I hope this truly does give you a new lease on life and you get to live a little again.  

beaumontdave's picture
beaumontdave
Posts: 822
Joined: Aug 2013

That was a rough ride, I'm happy you ended in a good and better way after all that. Anyone who reads your posts knows how tough you are. Like Sue and some others, you express exactly what you're feeling and going through, and to me, not shying away from hard truth and it's painful details is the measure of one's grit, or as they say in the old westerns, one's sand. Glad your on the mend and back at the keyboard..............................................................Dave

Kazenmax's picture
Kazenmax
Posts: 168
Joined: Feb 2016

So glad you are doing better. I can relate to the horror of a fistula.

After3 radiation treatments I developed a fistula. It was horrible. It happened on my way for treatment. I coughed and felt something pop. I ended up with APR sorry and during that surgery I had a separate surgeon repair my vagina. Evidently the radiation burned right through my colon. Although I ended up with a permanent colostomy, after a month of dealing with the fistula, life was way better after surgery.

K

SandiaBuddy's picture
SandiaBuddy
Posts: 514
Joined: Apr 2017

Congratulations, Jan, on a good outcome and some welcome good news.  You really deserve a break after all the tough times you have been facing.  I hope you continue to improve.

Trubrit's picture
Trubrit
Posts: 4461
Joined: Jan 2013

In England a cookie is called a biscuit. So, we're like a packet of biscuits, here on the forum. We're tough cookies. 

HA! I amuse myself 

I am sorry you have had to go through even more horrors. You definitely deserve a break. I hope you get good news and that break. 

Cyber hugs!

Tru

lizard44's picture
lizard44
Posts: 416
Joined: Apr 2015

Very glad you had good news to report after all you've been through. You really are a tough cookie.

Grace/ lizard 44

JanJan63's picture
JanJan63
Posts: 2066
Joined: Sep 2014

You all make me cry, you're so sweet. I'm gateful every day that I found this forum. Nobody else can truly understand what we go through physically, mentally, and emotionally. 

For the record, if anyone wants to know what it's like, I had a PICC line while I was there.

Jan

ron50's picture
ron50
Posts: 1686
Joined: Nov 2001

 That someone has finally taken the time to actually find out what was wrong and actually do something about it. There should be a sign oon the wall of the gastroenterologist that simply states, "your patients are cancer survivors , their problems are the sum total of every hit they have ever taken. Expect the worst and deal with it earlier than later." I hope beyond hope that you are due for a long period of reasonable health.

           I don't post a lot anymore but it is not because I have been living a life that has been without medical drama.  It seems that one of the areas that my cancer and treatment has effected is my endocrine system. A few months back one of my docs decided that  my hba1c (history blood count for diabetes ) was getting too high. He put me on a drug called gliclazide. I have been dropping into the hypoglicemic range nearly every day( under 4 mlmo per litre) . I stopped taking the drug but by the  afternoon each day I am well below the 5.8 which is the ideal count. Unfortunately it is playing merry hell with other meds. I was dxed this year with atrial flutter and atrial fibrilation. I take warfarin every day to head off blood clots . I have to have an INR  test done every couple of weeks to make sure my clotting factor is between two and three. I am constantly having to alter my warfarin dose to keep in the zone. Life after cancer can be a real pain in the A. Stay well jan, hugs Ron.

JanJan63's picture
JanJan63
Posts: 2066
Joined: Sep 2014

Thanks Ron. Words fro you mean a lot. I think you're one of the tughest people on here it not the toughest. I take Xaralto instead of warfarin or heparin. On the Xaralto pills I don't have to get my INR checked, ever. I wonder what the difference is. I'm glad you haven't had any medical drama lately, keep up the trend!

Hugs,

Jan

plsletitrain
Posts: 270
Joined: Jul 2017

Glad that you're now recovering well.  We were wondering about you.  You definitely deserve a break and I hope this is the start.  Keep well.

ron50's picture
ron50
Posts: 1686
Joined: Nov 2001

warfarin works on the vitK receptors in the liver which produce coagulants. The newer drugs work directly on the coagulant proteins and are more precise in their action. They stopped me on warfarin and put me on eliquis (apixaban) one of the newer drugs. I took only i tablet of eliquis and the veins in my eyes roped up like varicose veins. I went directly to the pharmacy . It really put the wind up him , he said he had not seen that reaction and told me not to take any more and try very hard not to rub my eyes . He said that the veins seemed very close to rupture and I could lose my sight. Appart from the the mechanism by which they operate warfarin and the new drugs have one major difference up to recently there was no antidote for the new drugs. If you developed a serious bleed the only option was  a very specific plasma  transplant which may or may not work. Warfarin on the other hand can be nullified by vit K injections. As far as I know an antidote has recently been produced for only one of the newer drugs and I don't know which one.. After three days of nothing I was put back on warfarin.  I have a strange reaction to it as I only require 1 1/2 grams a day to maintain an INR of 2.6.  It appears I'm a cheap drunk. Ron.

danker's picture
danker
Posts: 1153
Joined: Apr 2012

I had a fistula after a resection reversal!  In 6 wekks time, it healed itself.  Now NED for 8 yrs.

JanJan63's picture
JanJan63
Posts: 2066
Joined: Sep 2014

I'm glad yours resolved itself Danker. Mine was getting bigger over time, likely the past year or so. And there were three. I'mnot sure how common they are. I did end up with two abcesses from my initial cancer surgery, though. 

Hugs,

Jan

Sestra17's picture
Sestra17
Posts: 19
Joined: Jan 2018

I am so happy you finally got some relief from the misery. Hoping we both will ride again someday:)

Annabelle41415's picture
Annabelle41415
Posts: 5739
Joined: Feb 2009

You have been through a lot.  I'm so glad that you are feeling better.  Thank you for the update as I've been worried about you.  Wishing you a continued speedy recovery.

Hugs!  Kim

Cindy225's picture
Cindy225
Posts: 172
Joined: Feb 2017

Keep fighting warrior Jan!  Sooo glad you're doing well.  You inspire us all...

Cindy

JanJan63's picture
JanJan63
Posts: 2066
Joined: Sep 2014

Thanks you guys. I'm hoping this will be a new, healthier chapter in my life. I've spent the last year sick, basically. Nausea every day, some days worse than others, weak, no energy, pretty miserable. Now I know why so that's a big relief. And to now know that there is no more cancer in my abdomen and not likely in my liver is wonderful to know. I remember a surgeon in July of 2017 telling me he wouldn't do surgery on me because "when I open up people like you they're usually full of cancer". A$$hole. 

I'm glad to not have had such an insensitive jerk do my surgery. Instead I got a wonderful surgeon who went above and beyond. He said they weren't going to worry about the adhesions but instead he spent an additional 4 plus hours carefully clearing things out and taking the adhesions off of my kidneys so they're doing better now, too. I thanked him profusely after and he said he was just doing his job and seemed a little embarassed by my appreciation.

Maybe we can actually do a few things once I'm feeling better. Maybe go away for the weekend. My husband is retired now so we have the time. When he was working the hours made it impossible to do anything. Our honeymoon was just a long weekend. I'm excited about the future.

I still have the mets in my lung, of course, but chemo can deal with that.

I just feel so much more positive these days.

Jan

Canadian Sandy's picture
Canadian Sandy
Posts: 386
Joined: Jul 2016

Oh.....I’m so happy for you Jan! I think someone up there is watching over you.

Joan M's picture
Joan M
Posts: 295
Joined: Oct 2016

Thank you for sharing the graphic details.  It lets us all know what symptoms to look for and that there are medical options to help.  

Enjoy your time with your husband!  I bet he is happy to be able to travel and spend time with you.

 

Subscribe to Comments for "Fistulas & surgery, a little graphic"