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JBG Still Not Out Of The Woods, Yet - Update 11/11

wolfen's picture
wolfen
Posts: 1206
Joined: Apr 2009

Back to square 1. JBG started bleeding again, intermittenly, especially after trying to eat some oatmeal. Last night, she  was given a couple of enemas so a partail scope could be done, but the results were inconclusive as they couldn't go far enough to see anything. She was very sick with vomiting & diarrhea after & is in worse pain. Docs only say it could be a blockage, a carcinoma, or twisted intestine. Tomorrow she is supposed to have a barium enema with another scope attempt. Docs have yet to consult her surgeon to read the CT, even though she has asked for him repeatedly. Very frustrating. At wits end.

Luv,

Wolfen

Well, barium enema was a "no-go" as apparently, the liquid wouldn't stay in her. FINALLY, the surgeon is supposed to show up tomorrow. A member of his team came by today & talked about doing a biopsy if one has not yet been done.

With the help of an angel, I am making preparations to go there as soon as she has seen the surgeon. She asked me to wait until then. She was very weak, tired, in pain, & in tears when we spoke today.

Pepe, Sandy, & Tans, thank you for your suggestions, & Kathleen, I told her about Dick's surgery today, another suggestion of what may be wrong.

Just feel so lost right now.

Luv,

Wolfen

Lovekitties's picture
Lovekitties
Posts: 2992
Joined: Jan 2010

I am so sorry to hear that JBG is not doing well.

As for the surgeon...have her husband call him...don't wait on the docs.

And I have to question why they are trying to scope a patient who is bleeding and in pain.  Seems if there is a blockage they can determine that with sonagram or CT scan without contrast.  I know I had CT scan to determine a twisted intestine.

She needs some new eyes on her condition and how to assess her.

Prayers for her and all who are anxious about her health and care.

Hugs,

Marie who loves kitties

wolfen's picture
wolfen
Posts: 1206
Joined: Apr 2009

I talked to her hubby today & reminded him the "squeaky wheel gets the grease". I do know that on about Wed., her nurse said she would email the surgeon, but don't know what came of it. Crazy, but she has always said that her onc team does not look at the actual scan, only reads the report, but that her surgeon looks at the scan. Evidently on the CT, all they could say was they saw something, but didn't know what it was. This is a teaching hospital. Just wish they wouldn't use my daughter as the guinea pig!

Luv,

Wolfen

UncleBuddy
Posts: 711
Joined: Aug 2013

We are all praying that they figure this all out asap. I agree, the hubby needs to get on the surgeon himself about this. He shouldn't really care if the doctors, nurses, staff, etc think he's a pest, he is looking out for his wife, if he doesn't, no one else will.

Lin

UncleBuddy
Posts: 711
Joined: Aug 2013

We are all praying that they figure this all out asap. I agree, the hubby needs to get on the surgeon himself about this. He shouldn't really care if the doctors, nurses, staff, etc think he's a pest, he is looking out for his wife, if he doesn't, no one else will.

Lin

UncleBuddy
Posts: 711
Joined: Aug 2013

We are all praying that they figure this all out asap. I agree, the hubby needs to get on the surgeon himself about this. He shouldn't really care if the doctors, nurses, staff, etc think he's a pest, he is looking out for his wife, if he doesn't, no one else will.

Lin

thxmiker's picture
thxmiker
Posts: 1273
Joined: Oct 2010

We are sending additional thoughts and prayers for JBG!

 

Her husband must start getting proactive and voice oppions.  My wife and I start researching options and ask questions.  I know we want to trust our Docs, at the same time when they are not being good diagnostic technicians, we need to offer posible options.

 

Best Always!   mike

Annabelle41415's picture
Annabelle41415
Posts: 4399
Joined: Feb 2009

Prayers on the way for them to finally figure out what is going on.  My heart is with her, you and the family.  Let her know that her family here is keeping her in thought and prayer.

Kim

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

The possibility of varicose veins in her oesophagus ? I had same symptoms and suddenly had a terrible hemorragy by mouth an anus ! More than 1,5 litres ! Just in case! Praying !

karguy's picture
karguy
Posts: 1024
Joined: Apr 2009

I hope they find out what is wrong soon.Her husband should call the surgeon and find out what the problem is.I will be praying for her.

Varmint5's picture
Varmint5
Posts: 384
Joined: Feb 2012

Wow, a lot going on in for JBG. I am trying to read and catch up. I'm so sorry to read of this setback for JBG. Did she have radiation to her lower bowel or colon? Has she ever had this before? My daughter has had three severe bouts of rectal bleeding requiring blood transfusions, all due to an ulcer in her rectum from "diversion proctitis." It has healed and then come back, most recently two weeks ago. Hers is because she has a diversion colostomy. She also had radiation to that area and that probably did some damage. The colostomy prevents stool from going through the rectum and we've been told that "essential fatty acids" in the BM are what keeps the mucous membranes of the colon and rectum "healthy." Now we are on a search for a pharmacy that will supply "short chain fatty acid enemas" without much luck. Could something like this be JBG's problem? I certainly hope they can figure it out, and soon. I know how scary this is.

I hate this evil disease and the pain and struggle it causes in the lives of everyone it touches. I know how you, as her mom, must feel. It's such a feeling of helplessness. Thinking of all of you, and hoping that things get better for your girl very soon.

Sandy

tanstaafl's picture
tanstaafl
Posts: 1013
Joined: Oct 2010

"2nd or 1st opinion"

Can someone get a radiologist or another surgeon to read the CT for JBG and evaluate potential, extra options ?  An outside radiologist's reading and direct commentary saved my wife's bacon several years ago.  Maybe argue the insurance later. 

Klenner

We paid close attention to FR Klenner's experience to prevent/stop sepis, and bleeds from lack of wound healing in the hospital, and have always used IV vitamin C after surgery.    

 from Klenner, for unsutureable, easy tearing intestinal walls: "...In a hopeless surgical situation, two grams of ascorbic acid was given by syringe every two hours for 48 hours and then 4 times each day. In 36 hours the patient was walking the halls and in seven days was discharged with normal elimination and no pain. She has outlived her surgeon by many years."  

In modern times, we just get larger amounts of injectable vitamin C (p155-156) in the drip line with outside medical personnel.

 

 

 

 

janderson1964's picture
janderson1964
Posts: 1824
Joined: Oct 2011

I am so sorry Wolfen. That sweet girl has been throgh so much as well as you. You are both in my prayers.

ketziah35
Posts: 1154
Joined: Jun 2010

We are praying for jbg!

maglets's picture
maglets
Posts: 2436
Joined: Jun 2006

me too.....prayers for jbg...

fatbob2010's picture
fatbob2010
Posts: 457
Joined: May 2012

This is a terrible situation for her Wolfen.  I am hopeful that her husband will get energized and start TURNING OVER SOME DESKS, if that is what it takes.  

It is hard not to be intimidated by some of these providers.  He may have to remind himself that they are there for her and not the other way around.  

It seems that she has a difficult condition that needs an exceptional team.  Hopefully the surgeon will come to the plate and take control of her care.

I will be praying for her and radiating positive energy.  

((HUGS))

Art

herdizziness's picture
herdizziness
Posts: 3492
Joined: Apr 2010

I am so glad she did not heed the doc's advice and go home, he needs to go stick his head up his arse a little further because apparently it wasn't far enough up there at the time.

I'm grateful JBG is way too smart to have heeded that idiotic suggestion and stayed put, how in the world does someone go in with bleeding, diarrhea, and cramping and after one symptom disappears, the others remain and they have no idea what caused it and they suggest that person go home?!?

I have no suggestions, just hoping everyday that they sort this out, find the problem and fix it ASAP.

Sending love, hugs and virtual hand holding to both of you Wolfen.

Winter Marie

wolfen's picture
wolfen
Posts: 1206
Joined: Apr 2009

Please see update at bottom of my post.

Wolfen

PhillieG's picture
PhillieG
Posts: 4683
Joined: May 2005

Wolfen, I'm sorry to hear the JBG isn't doing well. My thoughts are with her.

jen2012
Posts: 1251
Joined: Aug 2012

Wolfen - I'm so sorry that JBG is going through so much.  I have been thinking of you guys and praying for you every day.   I'm so glad that you have a special angel to help you go and see JBG. 

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