Hi Dan,
Re. tube not draining:  as long as there is no fever, nausea, shoulder pain, it all sounds good.  I'm a 5 year veteran of biliary drains.

Pat:  My diet is restrictive too.   Sometimes all I have to do is look at something and and I feel nauseous.  I really struggle giving up sugar.  And I practically live on oatmeal, eggs, fruit.....just like you.  I used to love beer too.  A nice cold beer (mine was Corona with lime) on a hot afternoon.....nothing better.   

Betsy

Hi Derin,
I have lots of scar tissue from previous surgeries.  Mine have been treated with drains into external bags.  I am post surgical resection 5 years with no recurrence. 

betsy

3

(20 replies, posted in General Discussion)

Thanks for the complement LisaCraine!    big_smile  I'll get back to you tmrw re. next week.  Just got home from a tube change and need a nap.

betsy

4

(20 replies, posted in General Discussion)

Hi Denise,
I'm Betsy and have had drains for 5 years.  LisaS post was so well done.   I had a tube at the bra line too and bought demi-bras - not much support but very comfortable, pretty too.   I am not able to cap my drains.

- If your stitches become sore, heat a wet, clean washrag in the microwave and then hold it against your stitches.  It really helps speed up healing process and feels great. 

- For pain relief I take percoset or tramadol. 

- I use small binder clips to clip my bag to my pants.  Most times, I can hide my bag inside of my pants.  For showers, I have a cheapo plastic belt I wear that I clip my bag to. 

- It takes me a couple of days to feel better after a tube change.   Watch for signs of infection:  fever over 100, right shoulder pain, nausea, bad chills. last thing you want is another trip to the hospital, yuck!  I am taking a prophylactic dose of cipro.  have jammies and nice clean sheets on my bed waiting for me when i get home from tube change smile  oh, btw, i spend a fair amount of time in my pjs, so i have quite a few pairs....a girl has to have some fun, right!!

- I use 4x4 cotton squares to cover my stitches and paper tape to secure the squares.  I had problems finding tape that didn't bother me.....didn't like silk tape.  there are also wipes you can get a script for to use before you apply your bandage.  Its called "skin-prep" by smith &nephew.  many times my skin has gotten raw from tape so now i use this prep before using the tape.  miracle product!    Hope these tips help.

Hi everyone!

Just celebrated my 5 year anniversary of being cancer-free.  I'm still dealing with leaky bile ducts and drains and I'm being evaluated for a liver transplant.  I'm am so grateful to still be here.

Betsy Kubbins

Hi Everyone,

Celebrated 4 years cancer free January 2013.  Still dealing with stented bile ducts but otherwise o.k. 

xxoo
Betsy

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(25 replies, posted in General Discussion)

Hi Lisa,

Didi you ask Dr. Fung about zoloft?  I take it every day and also cholestyramine.  I know how miserable it is to itch and scratch like that.  I couldn't even stand to have clothes on and it was worse at night.  I know itching was due to bilirubin issues but maybe it will work for hives as well.

Love,Betsy

Hi Mary,
Hard to believe it's been a year.  Glad to hear from you.  It's been several years since my parents and brother died and the grief has gotten easier to bear but I still think about them all of the time.  I think you are doing a tremendous job of trying to get your life back together.  Glad your son is staying with you. 

Hi Hans,
Glad to see your post.  Hope you are doing well. 

hugs to you both,
Betsy

9

(14 replies, posted in General Discussion)

Glad to hear it isn't something serious but it stinks that you are still in pain.  Its been weeks of dealing with this pain.  Could they replace the port?

Betsy

Hi Lynn,
As a patient, I can understand George's hesitation.  I've been in the hospital many weekends and it is scary when none of your docs are around.  I was sent to the ER at a different hospital on a Friday night.  The ER docs took a look at my records and got spooked so they transferred me to the Clinic.  The beginning of a very long weekend.

Betsy

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(10 replies, posted in Good News / What's Working)

Anna - oh my gosh! what wonderful news!!  Give your mom a big hug from me.

xxoo
Betsy

i've been cancer free since my resection in January 2009. smile

oh! thank goodness!!!  i've been holding my breath just waiting.  that is wonderful news.  hugs and kisses to you both!!!

betsy

Hi Pam,
Are you seeing an MD for anti-depression meds?  I see a psychiatrist for my medications.  I started out with my MD but he just couldn't get the combination right.  I know it sucks to think of getting another doctor but you might give it some thought.     

xxoo Betsy

15

(7 replies, posted in General Discussion)

I haven't taken Paxil.  The problem with antidepressants is they take so long to work.  I did request a psych evaluation during one long hospital stay due to extreme anxiety.  The doc was able to give me an injection (cant remember what it was- but it was non-narcotic) to calm me down.  It really helped. 

Betsy  xxoo

Hi Pam,
I've been on anti-depressants for several years.  I take 75mg zoloft along with 200mg wellbutrin.  It does take a couple of weeks to see a benefit.  I didn't have nausea or drugged up feeling.  I do know what you mean about feeling numb.  That may or may not be the zoloft....could be a symptom of depression.  I would hang in there at the lower dose and see how it goes.  If the symptoms don't lesson, call your doctor.  There are many different anti-depressants to try.  I could not manage without my medicine.  I used to cry all day and felt such despair.  Things are much better for me now.  I can cope better with ups and downs.  Rarely cry anymore smile

Hope this helps.


xxoo betsy

Hi Pam,
Hang in there and wait until the results of the new MRI.   I know it's distressing news but it could be something less serious.   Sometimes the doctors get things wrong and scare the heck out of you.   

I'm sending you and Lauren huge hugs from Chagrin Falls. 
Betsy
xxoo

I can appreciate your Mom's concerns about clothing and being restricted to a different kind of wardrobe.  I've been dealing with drainage bags for about 3 years now.  I have a great collection of skirts with elastic waistbands for the summer.  I use a small binder clip and clip the bag inside the skirt.  I look for skirts everywhere I go and have found some really cute ones.  I also treat myself to pedicures and new cute sandals.  I've had 3 bags sometimes and I found anything with an elastic waistband will hide the bags.  In the winter, I wear black yoga pants, longer sweaters.  I also spend money on make up and coloring my hair,  These are things I used to do without but now it really helps me feel pretty.  I do miss my jeans and shorts but I've gotten used to it. 

Also, I ask my doctor to shorten the tubes so I don't have to deal with those long tubes.  Ask your doctor about that.  I can do it myself now.  Its not hard at all just have to be sure to keep everything clean.

Betsy

19

(20 replies, posted in Members' Cafe)

I would love to meet up with everyone again and to meet you Mary!  So glad you have a new puppy.  Dogs are wonderful companions and do so much to ease the sadness of being alone.   

I don't mind making the trip to Grinders.  Let's pick a date!

Betsy

I've had external drains for about 3 years now.  I've been given different meds to help with the itching.....cholestyramine helps and I am also taking 75mg Lexapro which has really helped ease the itching.  I haven't had success with any over the counter meds or lotions but an oatmeal bath feels wonderful and helps temporarily with the itching.  I think he will feel better with the drain.  The risk of infection is there but in my case I had to have the drain. 

betsy

21

(16 replies, posted in General Discussion)

Yes, I missed you too Byron! and was very worried.  Sorry for the insurance coverage issues.  Glad you were able to get away and go to Hawaii. 

Betsy

I would do it Pam.  My sister has one due to her vision and it is so helpful.  She keeps telling me to get one because sometimes I'm just can't walk too far.  Its very easy to get one. 

Betsy

23

(26 replies, posted in Introductions!)

Hi Wilma,

I don't know if this will help in your hubby's situation but I had fluid drained off my abdomen then was put on Lasix 1x/day.  Really helped me.

Betsy

24

(2 replies, posted in General Discussion)

Marion is so right.  Time goes by so fast. I think the anticipation and fear of the unknown is the worst part.  Your mom will be given pain meds for the biopsy and port.  I was just sore more than anything else from those procedures. 

hugs,
betsy

25

(9 replies, posted in General Discussion)

Speaking as a current patient, (age 52) I would want to know how serious the situation is and that the options are limited.   I have been sick for the last 3-1/2 years and while I hope for the best, I have been seriously ill 2 times already and I am aware that a health crisis can come on me at any time and I could die.  So, armed with this knowledge, I have the choice to make what's left of my time living my life the way I want, without regret.  My family knows my wishes after I die and I've talked very openly about this with closest friends.  This is a great comfort to me.  I have been able to open my heart more and I am full of love, given and received by so many. 

There are social workers on staff at hospitals and they would probably have suggestions on how to have this discussion with your sister.  I do appreciate the situation you are in and I know it must be incredibly difficult and sad.   I hope my own experiences are helpful.     

   
hugs,
Betsy