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Another fistula

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Went to my family doctor yesterday to see what's up with me. I've been incontinent for months. I were Depends 24/7 because urine just comes out whenever and without warning. It's embarassing and I was hoping it would go away but it hasn't. My doctor told me yesterday that I have another fistula. So I had two repaired last September. It's just the way things are healing and growing scar tissue in my abdomen. I'm going to be sent for an MRI once they get it booked. This is to find out if they can easily repair i laprascopically or it would require surgery.

I asked if I could just leave it and he said I could. So if I'd need surgery I think I'll just leave it and live like this. The surgeries knock me down for months, I just can't do another one if I don't have to.

The only explanation he has for some of my other stuff like the fatigue that's always present but comes and goes in severity is that I'm stage 4 cancer and I'm doing far better than I ought to be under the circumstances. He said I'll just have bad days and good days and I have to be careful not to overdo it and that's about it. It turned out my magnesium is finally back to normal.

Anyway, it's not huge but it's depressing. My CEA is up again so they'll likely want me to go back on chemo before summer is over and I so don't want to. I hate feeling defeated.

Jan 

myAZmountain's picture
myAZmountain
Posts: 241
Joined: Apr 2018

Oh Jan so sorry to hear of the fistual and problems--praying that it can be taken care of laparoscopically--and so sorry to hear the CEA is rising, is there any chance it could be related to the fistula? Thinking of you always.

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I don't know if I even want to do it laprascopically. Even a day in the hospital is too long. The smells, the food, the sounds, it's all traumatic. But not only do I have to wear a Depend at night, I have to lie on a towel in case that's not enough. This is pretty annoying.

Jan

Annabelle41415's picture
Annabelle41415
Posts: 6125
Joined: Feb 2009

I'm sorry about the CEA and fistula.  It has to be a let down and I'm not sure how much I'm able to add to that.  Just wishing you could have caught a break.  Maybe the MRI will give you some positive news on a better fix than another surgery.

Hugs!  Kim

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Thanks Kim. The constant things my body seems to come up with are really getting old. I didn't even cry, I was just 'yup, here we go again'. I just have to be thankful that it isn't something that needs to be dealt with immediately or emergency surgery like the last time I had fistulas. And then I get angry thinking why should I have to be so freaking grateful because yet another side effect isn't life threatening or needs immediate hospital care. I'm so sick of this garbage.

Jan

Slow-runner
Posts: 51
Joined: Oct 2017

Hey Jan just read your post, am very sorry for this recent development and pray that it can be repaired laprascopically.  You continue to amaze me and give me such hope.  My husband took a real downward turn in April, truly thought I would be without him this summer.  As bleak as things looked, thinking of the difficulties you have overcome gave both of us hope that just maybe this wasn't his time.  He has turned the corner and is improving each day.  His CEA also is on the rise again but physically he is improving so much that the doc is not too concerned.  I re-read your story often to remind myself just how challenging the ups and downs of this disease can be. I hope you continue to face each day with your positive outlook and wonderful spirit. Mary

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Mary, thank you so much for telling me that!! I feel like one of the few things I have left to offer in this world is hope and it's so important to me to do that. To know that I was able to to give both of you hope has me in tears, I am so happy. It's morning and you've just made my whole day! I'm SO glad he's doing better!! Thank you! Give him a hug for me for being a fighter, please!

Oh, I feel so good now. My husband is away until later today and I had to get the garbage out to the street for pick up today and I was wiped out after but now I feel so invigorated, thank you.

Jan

Trubrit's picture
Trubrit
Posts: 4759
Joined: Jan 2013

I'm sorry to read this. I was hoping for a summer off for you as well.  

I do hope there is no more surgery for you.  Will it mean pads or Depend for the rest of your very long life?  That is doable. I have to wear a panty liner always, and while its not what I would choose, its doable.  

Well, you know you've got allot of folks here routing for you. 

Tru

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Thank you. Things like this keep my feet on the ground, I guess. We'd been seriously discussing buying an acreage with my daughter. She really wants one, we'd like to be in the country again, and if we found the right place we could buy it without gettinga bigger mortgage and she can have a mobile home for compassionate purposes according to the county. My horse needs a pill every day and I'd love to be able to see him out of our windows. Then I get news like this an am reminded that things like that are out of the question.

Jan

Msboop15's picture
Msboop15
Posts: 80
Joined: Apr 2019

Jan, I’m so sorry you are going through so much right now yet you keep going. I have no idea how I would handle all the various issues you’ve been dealing with. You are an inspiration. Please know you are in my prayers. 

Elaine

Kazenmax's picture
Kazenmax
Posts: 331
Joined: Feb 2016

Man you have been thru it! This really sucks. Isn't it amazing what we can live with!

Hang in there girl. I'm so sorry this has happened. I know how rough that can be.

Sending love and strength your way.

K

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Thanks everyone. I haven't had the MRI yet but I'm starting to suspect that I have two fistulas. When I saw my doctor for the one he asked if I have any urine coming out rectally and I didn't. In the past week I've had it. He said if I did it would mean there's another one to the bowell. Seriously, somtimes I imagine just giving up. It's nice that they think I have more years left but the suffering and issues while I'm still alive sometimes just seem like too much.

Jan

Steelkiwi686's picture
Steelkiwi686
Posts: 36
Joined: May 2019

Jan I am so sorry to hear of this development. It hurts to read about you feeling discouraged after all you have been through.  I know you’ll never give up but please know we are with you and hoping for the best possible outcome. 

Keep your head up.  I’ll be praying for better days ahead for you. 

I hope you enjoy the day.

 

 

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Thank you so much. I'm having a hard time lately both physically and emotionally. I'm glad to be alive but my quality of life is in the toilet. I'm back to spending most of my time in bed, often sleeping. I have no stamina whatsoever. We're having money issues yet again so that's stressful. My husabnd and daughter are sympathetic but have no idea how tired I am all the time. I want to ride my horse today but I don't know if I have the energy. My daughter says 'just push through it'. That's what I do every day just to do the most basic things. Basic hygiene is a struggle.

 

Sorry for whining, I'm just so fed up and emotionally drained.

Jan

Steelkiwi686's picture
Steelkiwi686
Posts: 36
Joined: May 2019

Well yes I am sure you must be drained after dealing with so much on a daily basis. Goodness you are not made of stone. I do hope after seeing your doctor and mri etc that you will decide to maybe have the surgery for peace of mind and quality of life. Please don’t take this the wrong way , after you stated how hard it is to get through this type of surgery. I have not been through this and can not comprehend how hard it is.  I just want to see you get relief so you can carry on without this additional burden. 

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

The MRI will determine if they can do laprascopic, which I'd consider. But I had a sugery for this last September and didn't start feeling half normal until March of this year. I'm not stron to begin with. Plus every time they go in there it causes more internale adhesions and that's why I get crap like this. It hasn't been long enough since the last surgery for me to have forgotten how bad it was.

Jan

Steelkiwi686's picture
Steelkiwi686
Posts: 36
Joined: May 2019

I’m so sorry and will pray that laparoscopic will be an option for you. I’m sure no matter what you will make the right decision for you. 

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