HELP

[JennifersHope]

I need help.. My doctors came in tonight the ones that are dealing with my CF doctor and they are telling me that I have Fibrosis in my colon.. and intestines and that it is a part of cystic fibrosis... and that is part of my problem in why I am not healing.. so they are ordering more Golytley for me and they are stuffing some kind of ball up my butt and going to shoot contrast into it.. and then give me a barrium enema...

Problem is if they are wrong they are going to burst my intestines.. or they potentially can... The doctors don't agree on the treatment.. CF doctor thinks this is the way to go.. though he has not seen all my catscans....... The surgons and GI doctors think that it is all diviticulitis..

Oh and for some reason they are testing me for ovarian cancer.. they are running a Ca 125 test on me but no one will tell me why..... they said "lets not focus on that right now" This is an unbelieveable nightmare for me.. and I can't believe I have to have ppl I work with shove a ball up my butt.... and I have to drink goltley every day...

I think I have reached my ulitmate limit.... and I just want to scream ... and the doctor told me all this in a drive by conversation.. He was in my room for less then 3 minutes...

and my primary doctor didn't call me back when I called him today to find out why they are testing me for ovarian cancer..

Has anyone had this type of enema before???

Jennifer
Day 21 of being in the hospital

 

[Diane]

Oh Jennifer, i wish i knew what to tell you. I wish i had some answers, but all i can offer right now is some support . I can only imagine it is so hard to know the right thing to do at this point. If it were me i would not allow this testing until my doctor himself has seen the catscans....all of them, so he can make a better decision. I hate invasive testing unless it absolutely HAS to be done and i am imaging you feel the same way. stay strong Jennifer, and i hope someone can post who knows something about this test they want to do on you.

 

[kybert]

oh boy jen! i hope everything goes well and no one stuffs up. i hate it when cf docs want different treatment to other docs. you just dont know whos right!

 

[Jem]

I am so sorry Jen that you have to go through all of this.  21
days in a hospital with no end in sight has to be very difficult.
 <br>
<br>
As far as the ball up your butt.  The doctor could have been
meaning that at the end of the tip that is inserted into the rectum
for the contrast/barium test there is a rubber balloon. This
balloon is inflated  to help hold the tip in place for the
procedure.  When inflated it looks like a small ball.
 Sometimes they pump air into the bowel for a contrast which
can cause some cramping.  They can use a contrast medium that
can help visualize the lining of the bowel but many like to use
barium as it outlines the bowel well, especially when looking for
diviticulitis. They do have to clean out your bowels very well to
be able to see the all the areas well.  The clean out process
is not fun as you know but is important.  I'm sure they will
go slowly with the barium so as not to aggravate any injured areas
further but if you do not have confidence in the radiologist
performing the procedure and you should meet him/her beforehand
 then ask for another one.  There are usually several
available in a department.  <br>
<br>
As far as the Ca test....well, they probably are covering all there
bases so don't get too worked up at least it us just a blood test,
which should come out fine.<br>
<br>
Please keep us updated.  You are in my prayers.<img src="i/expressions/heart.gif" border="0"><br>
<br>

 

[Giggles]

Oh Jennifer!!!! I am so sorry you have to call for all this. I say get all those doctors in the same room and you all have a discussion. Go with your gut if you do not think the care you are getting is right DEMAND you all talk before you do anything. This is your life and your health and your deserve all the attention.


I will pray for you!!!!



Jennifer 34 years old with CF and CFRD

 

[Debi]

I hope there is some way to get all the doctors together and have at least a cf and a gastro come in together to talk with you and explain what's going on. And I agree with those who say not to do anything that does not feel right to you. Never underestimate your "gut instinct" - oh geez, no pun intended. You know what I mean. We are pulling for you. Can any of your nurse friends be of help in sorting this all out or putting you in touch with a highly respected physician who you would trust to sort this all out?

It's very difficult to advocate for yourself when you're not feeling well PLUS you're on meds and not always thinking 100%. Can your dad or a close friend be an assertive advocate for you? Wish I could be there to help.

I am so sorry this is happening. Try to stay strong.

Debi
54 w/cf

 

[anonymous]

oh Jen you do seem to have a rough ride sometimes, im so sorry!

Look i've had a barium enema myself and i have to say, it isn't that bad - embarrassing maybe but not painful, only a little uncomfortable and all over pretty quickly.

Is there a way you could have this done at a different hospital or clinic - away from the people you work with?

As for the ovarian cancer test - don't be alarmed. This will just be a precaution because OC has few if any symptoms and the few symptoms it does have can be similar to GI type symptoms e.g. bloating and abdominal discomfort.
I'm sure you have absolutely nothing to worry about, your doc is just being thorough.

Not much more I can say - be strong, try not to worry and i'll be thinking of you.

let us know when it's all over and you're feeling brighter!! Best of luck.

 

[JennifersHope]

HI Guys,

Thanks so much for you love and support.. I had the gastrographin enema today.. It was not as bad as I thought.. Though it was very painful when it went past the area of diviticulitis..

Thankfully I didn't know the girl that well that did the test and the radiologist really didn't know me either... It actually worked really well and helped me feel a lot better..... I was wondering if any of you have had DIOS which is a condition in the intestines related to CF....? I guess it is like the blockage newborns are born with. THey are saying that my intestines had this. My CF doctor and CF nurse all but took over my case and thankfully insisted that things get done... Pretty much they told me that my doctors didn't take good care of me and that I could have had real serious damage to my intestines because they chose not to educate themselves about CF and intestines and not only that, they were super pissed that my GI doctor ignored the advice of CF doctor.. I am in a jam sort of because my insurance will only pay for me 100 percent at this hospital and my CF doctor doesn't come here... We are working some things out.....though...

They are really insistant on the hysterectomy and colon resection.. MY CF team said no surgery for me till they clear me.... Anyway the enema helped me so much most of my pain is gone... Thank GOD.. I am probably going home in a few days.. maybe tomorrow.. and then I have to schedule the surgeries.

They are ruling out two different types of cancer in me one being colon cancer the other being ovarian cancer.. I don't think they think I have it, but when I read the doctors notes, I see they have found some suspecious areas.. My CF nurse thinks it is nothing and that they just are not use to seeing CF intestines...


I am at a loss for words and I have been crying on an off all day.

I had a nurse tell me today "WHY WOULD YOU EVEN WANT TO HAVE A NATURAL CHILD AND PASS ON YOUR HORRIBLE GENES" CAN YOU IMAGINE.. THEN SHE TOLD ME TO GET A PET....

ANYWAY, I am thankful for the support I have received, and tonight after calling one of my friends in hysterics about wanting my uterus.. within the hour I had a party in my room with top ten reasons to " Save Jenn;s Uterus" it made me laugh really hard..

I can't tell you how overwhelming it is to have doctors not be on the same page and for their dumb egos to get in the way of good care for me....

I might be going home tomorrow or the next day and I can tell you for sure that I will be spending the day at the spa.....

 

[thelizardqueen]

Oh Jen - I hate, HATE that you have to go through all of this. I wish there was something I could do or say to make things better for you. Just know that we're all here for you, that you're a strong woman, and that you will get through this. I do hope that you get to go home tomorrow. A 3 week stay is enough to get on anyone's nerves. And I completly understand doctors not being on the same page as you resulting in not the greatest care.