enterorectal fistula

foods55

Hello,

Even though I had endometrial cancer in 2011.  Does anybody have some input and advice on enterorectal fistula?  I do get on both forums but wanted to know if anybody has gone through this.

History: I had stage 111a endometrial cancer(uterine cancer) in 2011. Received hysterectomy, chemoradiation at that time. Then found out to have rectal cancer and was operated on 2/13/2015 and underwent a proctocolectomy  ended with a pernament ileostomy and chemo for a year. The colon-rectal surgeon was unable to get a margin around the tumor  anterirorly and on the right lateral aspect because of involvement of the vagina, bladder and pelvic sidewall. Had PET/Cat Scan on 10/06/2015 and found to have mural thickening and metabolic actity at the anorectal junction. MRI on 11/03/2015 revealed a 3.5 cm lobulted mass extending superiorly from the area of the staple line with recurrent rectal neoplasia. The mass extends to the margins of the vaginal cuff and directly contacts loops of small bowel in the lower pelvis with resultant enterorectal fistula.

I have to wear a pad because though most of my stool passes out of my stoma however some of it passes out of my rectum and have some mild bleeding.  I will have both surgeons gynecologic/oncologist and the colon-rectal surgeon doing surgery on January 20th because that is the first available date to coordinate the surgery.

In the last week I've been having a lot of leakage from the the rectal area and having pain in abdominal area every time I eat a meal.  I am still getting small amounts of liquid and stool input into my ostomy bag.  It doesn't seem to get better and have called the Oncology nurse navigator.  She said because of my tumor I'll have leakage until I have surgery and they don't seem to know why I'm having pain in my abdominal area. She did call the nurse that directly works with the colon sugeon and she didn't give me much advice on what to do. My surgeon is in surgery until 2:30 pm and the nurse wil try to talk with him about the problems I'm having and what to do until I have surgery.

I'm trying to eat a good diet and drink fluids so I don't get dehydrated and taking it easy.  I'm frustrated I don't know exactly what foods and liquid would help except water, gatorade, and ensure. Also, trying to eat a high protein foods but I can bearly eat enough and drink enough liquids to keep me as healthy as I can until surgery which is a good 2 months away.  I'm afraid I'm not going to make it until my surgery date and will have to in for emergency surgery.  I appreciate if anybody can give me some advice or has gone through this that can help me out.

Thanks,

Sue

molimoli

Wow this is truly an awful colorful disease.Hugs Sue

I have no answer for you but couldn't help posting to tell you that I am vey sorry your journey has been so rough.I wish you success in the upcoming surgery I pray this will be the turning point for you, you really need a break my sister.

Thanks for the very informative post, the reality of the damage this condition can cause is hard to fathom  without detailed posts like yours . It is eye opening and threatens nerve wrecking if one has not found solid grounds to stand on. Geez!! Oh my  Creator have mercy on us.

SO sorry , I wish you added strength and a truckload of renewed courage. Showers of blessings my sister,hugs , Moli.  

Kaleena

Dear Sue:
Sorry you have to

Dear Sue:

Sorry you have to go through so much.    I too was diagnosed with Grade 2 Stage 3a Endometrial Adenocarcinoma - Mine was in 2005 and then recurrence in 2010.   Then I developed hydroureternephrosis in 2014 in which I have a stent in my left ureter.  I also have a 6 cm soft tissue mass which runs from the vaginal cuff along the bladder to the rectum.   For almost a year I have been having trouble with my bowel movements.  Off and on abdominal cramping etc.   Everyone said it wasn't related to anything.  I also gained weight without changing my diet.   I feel that my bowels are not working efficiently.   I do have rectal pain on my left side and they have been keeping an eye on it.

Let me ask you, do you get your abdominal pain on the left side under your rib cage?    I get a achyness there.   I really don't feel pain too much as I believe I have so much scar tissue that it blocks some of the nerves.   FUrther, it feels at times that I don't have muscles in my bowels to get things moving even though I go everyday I just can't "push" it.

I would suggest that you have your Lipase blood levels checked.   I was feeling this way for months and just ended up in the hospital with pancreatitis.   They couldn't find the reason for it either.   I also kept telling them that I was bloating under my rib cage, etc.   I didn't eat much or felt full quickly.  It was getting depressing.  I know what you mean when you say your afraid to eat anything because you know that you will have issues.

I hope you get your answers soon.

My best to you,

Kathy

foods55

molimoli said:

Wow this is truly an awful colorful disease.Hugs Sue

I have no answer for you but couldn't help posting to tell you that I am vey sorry your journey has been so rough.I wish you success in the upcoming surgery I pray this will be the turning point for you, you really need a break my sister.

Thanks for the very informative post, the reality of the damage this condition can cause is hard to fathom  without detailed posts like yours . It is eye opening and threatens nerve wrecking if one has not found solid grounds to stand on. Geez!! Oh my  Creator have mercy on us.

SO sorry , I wish you added strength and a truckload of renewed courage. Showers of blessings my sister,hugs , Moli.  

Thanks for responding

It sure was an eye opening for me!  One nice thing about all of this is they were able to move my surgery date to Wednesday, November 25th.  The day before Thanksging. I'm blessed that both my gyn/oncologist  surgeon and my colon surgeon was able to move up the date for my operation.  I'm in the hospital right now because of severe back and pelvic pain, and leakage coming out of my rectum.

I'm getting ready for prep tomorrow.  Also, I'm on a lot of pain medication.  I'm asking for a lot of prayers to get me through this operation because my colon surgeon keeps telling me this is going to be a difficult operation however both surgeons have a lot of experience which I'm thankful for!

My family and friends have really been supporting me during this difficult time!

I contine to pray for everyone on this site.

Sue

foods55

Kaleena said:

Dear Sue:
Sorry you have to

Dear Sue:

Sorry you have to go through so much.    I too was diagnosed with Grade 2 Stage 3a Endometrial Adenocarcinoma - Mine was in 2005 and then recurrence in 2010.   Then I developed hydroureternephrosis in 2014 in which I have a stent in my left ureter.  I also have a 6 cm soft tissue mass which runs from the vaginal cuff along the bladder to the rectum.   For almost a year I have been having trouble with my bowel movements.  Off and on abdominal cramping etc.   Everyone said it wasn't related to anything.  I also gained weight without changing my diet.   I feel that my bowels are not working efficiently.   I do have rectal pain on my left side and they have been keeping an eye on it.

Let me ask you, do you get your abdominal pain on the left side under your rib cage?    I get a achyness there.   I really don't feel pain too much as I believe I have so much scar tissue that it blocks some of the nerves.   FUrther, it feels at times that I don't have muscles in my bowels to get things moving even though I go everyday I just can't "push" it.

I would suggest that you have your Lipase blood levels checked.   I was feeling this way for months and just ended up in the hospital with pancreatitis.   They couldn't find the reason for it either.   I also kept telling them that I was bloating under my rib cage, etc.   I didn't eat much or felt full quickly.  It was getting depressing.  I know what you mean when you say your afraid to eat anything because you know that you will have issues.

I hope you get your answers soon.

My best to you,

Kathy

Thanks for your input

Kathy,

I have been reading your informative posts since I found out I had Endometrial Adenocarcinoma in December, 2010. Also, I know you have been through a lot with all your doctor appointments, scans and operations.  You and all the ladies on this site have given me a lot of hope and strenght for what ever I had to deal with next.  Also, I  have been getting a lot of abdominal pain for the last three months that starts on the left side and continues to my right right pelvic area.  I have had so many blood test for the last from my PCD, Gyno/oncologist, colon surgeon and now the doctors who are on call at St. Joes in Ann Arbor.  All my blood counts are low and I just found out I'm anemic.  I've been given bags of mag, sodium, potassium, saline solution however I'm happy my counts have gone up which I'm greatful for.  I'm on a liquid diet until my operation which will be done thsi Wednesday at 7:30 am and pre op. starts at 5:30 am. I'm glad I'm already at the hospital that's one less thing to worry about.

Best wishes to you and everyone on this forum.

 

Happy Thanksgiving to everyone and I 'll be sucking on turkey ice chips

TeddyandBears_Mom

foods55 said:

Thanks for your input

Kathy,

I have been reading your informative posts since I found out I had Endometrial Adenocarcinoma in December, 2010. Also, I know you have been through a lot with all your doctor appointments, scans and operations.  You and all the ladies on this site have given me a lot of hope and strenght for what ever I had to deal with next.  Also, I  have been getting a lot of abdominal pain for the last three months that starts on the left side and continues to my right right pelvic area.  I have had so many blood test for the last from my PCD, Gyno/oncologist, colon surgeon and now the doctors who are on call at St. Joes in Ann Arbor.  All my blood counts are low and I just found out I'm anemic.  I've been given bags of mag, sodium, potassium, saline solution however I'm happy my counts have gone up which I'm greatful for.  I'm on a liquid diet until my operation which will be done thsi Wednesday at 7:30 am and pre op. starts at 5:30 am. I'm glad I'm already at the hospital that's one less thing to worry about.

Best wishes to you and everyone on this forum.

 

Happy Thanksgiving to everyone and I 'll be sucking on turkey ice chips

Sue

I'm so glad they were able to get you in for surgery sooner. Can't imagine you being in this kind of pain until January!

I'll be thinking about you tomorrow and hope you go through surgery very smoothly with a quick recovery.

Please let us all know how you are doing once you feel well enough to respond back.

Love and Hugs,

Cindi

Kaleena

foods55 said:

Thanks for your input

Kathy,

I have been reading your informative posts since I found out I had Endometrial Adenocarcinoma in December, 2010. Also, I know you have been through a lot with all your doctor appointments, scans and operations.  You and all the ladies on this site have given me a lot of hope and strenght for what ever I had to deal with next.  Also, I  have been getting a lot of abdominal pain for the last three months that starts on the left side and continues to my right right pelvic area.  I have had so many blood test for the last from my PCD, Gyno/oncologist, colon surgeon and now the doctors who are on call at St. Joes in Ann Arbor.  All my blood counts are low and I just found out I'm anemic.  I've been given bags of mag, sodium, potassium, saline solution however I'm happy my counts have gone up which I'm greatful for.  I'm on a liquid diet until my operation which will be done thsi Wednesday at 7:30 am and pre op. starts at 5:30 am. I'm glad I'm already at the hospital that's one less thing to worry about.

Best wishes to you and everyone on this forum.

 

Happy Thanksgiving to everyone and I 'll be sucking on turkey ice chips

Sending caring thoughts

Glad you are able to get your surgery sooner!   Blessings to you!   Sending you comforting thoughts and prayers that this surgery will make you feel great!

I will be thinking of you tomorrow.   Please let us know once you are back home.    Kathy

Abbycat2

Kaleena said:

Sending caring thoughts

Glad you are able to get your surgery sooner!   Blessings to you!   Sending you comforting thoughts and prayers that this surgery will make you feel great!

I will be thinking of you tomorrow.   Please let us know once you are back home.    Kathy

Sue, wishing you the very best

surgical outcome possible. I was also diagnosed with stage 3a uterine cancer, grade 3. I will be saying a prayer for you tomorrow morning. 

Warmly,

Cathy

 

EZLiving66

foods55 said:

Thanks for your input

Kathy,

I have been reading your informative posts since I found out I had Endometrial Adenocarcinoma in December, 2010. Also, I know you have been through a lot with all your doctor appointments, scans and operations.  You and all the ladies on this site have given me a lot of hope and strenght for what ever I had to deal with next.  Also, I  have been getting a lot of abdominal pain for the last three months that starts on the left side and continues to my right right pelvic area.  I have had so many blood test for the last from my PCD, Gyno/oncologist, colon surgeon and now the doctors who are on call at St. Joes in Ann Arbor.  All my blood counts are low and I just found out I'm anemic.  I've been given bags of mag, sodium, potassium, saline solution however I'm happy my counts have gone up which I'm greatful for.  I'm on a liquid diet until my operation which will be done thsi Wednesday at 7:30 am and pre op. starts at 5:30 am. I'm glad I'm already at the hospital that's one less thing to worry about.

Best wishes to you and everyone on this forum.

 

Happy Thanksgiving to everyone and I 'll be sucking on turkey ice chips

How are you doing?

How did the surgery go?  Hopefully you were able to enjoy a little more than ice chips for Thanksgiving?

Take care,

Eldri

molimoli

Turkey icecube,Yum. LOL

Great outcome and speedy recovery,my wish for you today.

 I am hugging ,Moli