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Hi everyone,

I wanted to post a update to another thread about my husband.

In May 2006 my husband became desperately ill with his gall bladder and had it removed. A gall stone that was missed during surgery got lodged in his pancreatic duct and he continued to get sicker after surgery. When they realized the missed stone was blocking the duct it was too late and he had developed pancreatitis along with infectious pancreatic cysts. As a result he almost died, lost his spleen and some of his pancreas. This caused pancreatic insufficiency and resulted in him becoming a insulin dependent diabetic. It took 8 months for my husband to get on with his life and start to feel human again.

For the last 2 years things have been good with his health. 4 months ago I noticed a distention in his stomach and asked him about it. I told him to go to the doctor as he may be getting a incisional hernia. I also noticed a shortness of breath that was something new. He had just started a new job and told me he felt fine so he did not get to the doctor.

Well January 3rd, last month, he was rushed to the hospital and admitted with pancreatitis. He spent 3 days in the hospital and ended up walking out due to horrible care. Since then he just has not felt good but again, he is at a new job and had to work as he does not get paid for sick time yet. While he was in the hospital the CT scan and MRI showed a area of concern on the head of the pancreas. The doctor thought it may be cancer so he was scheduled for a Endoscopic Ultrasound this past Monday, February 2nd.

This procedure allowed the doctor to biopsy the area to see exactly what we were dealing with. It was only 2 hours after the procedure was complete and we were not in our house 15 minutes and he became violently ill, throwing up, severe pain and a temperature of 104 degrees.:eek::eek::eek:

He was rushed back to the hospital and admitted yet again with pancreatitis. His white blood cell count was 31,000 and his pancreatic numbers were through the roof. He was taken to CT scan which now shows more pancreatic cysts along with a severe case of pancreatitis. He has been in the hospital every since on IV fluids, IV antibiotics and IV pain meds.

The biopsy came back negative for cancer but the doctor wants to repeat the test in 3 months after the pancreas has calmed down completely to allow better visualization of the suspicious area. In the meantime he is doing better and is re-hydrated and with out pain.

We hope he will be released today or tomorrow. Thank God his boss at this new job is understanding and told him to work on getting better and then come back to work. For this I am more then grateful!!! No job spells disaster especially since I do not work.

So, through all of this I have lost more hair and developed 15 ulcers in my mouth. I cant eat because my mouth is on fire and the ulcers I have in my intestines are really flaring up horribly. I have lost more weight which is just not good as I am already too thin now. My follow up Endoscopy is next Monday, February 9th and I can only imagine what will be found.

It is hard enough that I am sick and the doctors do not know what is causing my retractable ulcer disease but now to be told that my husband may deal with chronic pancreatitis for the rest of his life and they do not have an explanation as to what has caused this to come back is just too much to handle.

The hardest part of all of this is that I feel so badly for my son who appears strong on the outside but I can only imagine that at 17 years old he must be scared to death with 2 parents that are so sick.:sad::sad::sad:

I am sorry this post was long but I wanted to up date everyone that has provided me with support and compassion through this crazy roller coaster ride I have been on and say "Thanks" for being there for me.:wink2::wink2:

I want the ride to stop NOW! I am tired of worry and sadness in my life.:mad:
 

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Hi Karol

Thanks for the update. I have been wondering how you and your husband have been getting on. I am sorry that he is so poorly, it must be a very worrying and distressing time. You have both been through so much, I am not suprised to find that you are not well. Stress takes it toll on our health.

I am glad that his new boss is understanding and that the biopsy was negative. I wish I could say the right things to help you with your worry and pain. I am a mother so understand that no matter how sick we are we still worry for our children, it can be very tough on them. Someone once told me that children who are exposed to illness in their lives become extremely compassionate, caring people who have empathy for others.

Sorry Karol I am not very good with words but I want you to know that I am thinking of you and your family and am hoping that things get better for you very soon. I sincerely hope that your husband is at least getting better care in hosp than last time!

As for you try not to worry about Mon, easier said than done I know. I hope it goes well on Mon, let me know how you get on.

Sending you get well wishes and the strength to cope.

Deb x
 

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Hi Karol

I am glad you posted about hubby and yourself as i been thinking and wondering how your hubby is doing.I cant even imagine what kind of stress and pain hubby has been under but also you with the huge stress of everything would take its toll on you (((hugs))) and your hubby.I am sure hoping and praying that thing will get figured out and better for both of you and real soon(((hugs))).Stress definatley the worse for us fellow lupies((((hugs)))).I know it is hard but try to hang in there and take a break and at least sleep when you can.Please keep us informed about both of you when you can.

Tammy
 

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Hi Karol,

Thanks for the update. Glad to see the biopsy was negative. That must be a relief for now. I am sorry to hear that this will be chronic though.

Good luck with your test on Monday. Hopefully this time you will actually get an answer.

What are you using for your mouth sores? I do a salt water rinse. Since you have so many you might want to contact your doctor to see what he suggests.

Take care,
Lazylegs
 

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sending a big hug

Hi Karol, what a heavy load you carry, it is not surprising you are tired and sad... you must be emotionally exhausted. It is hard to watch somebody we love going through so much, particularly when you are battling at the same time. Keep plodding through; I should think you and your husband are showing your son what grit and determination is, also how life can be so difficult, and yet still you go on. I think he is very likely to be a lovely compassionate young man who has had good role models in his life.
take care of yourself whilst looking after and worrying about everybody else and hope Monday gives you the answers you need.
I will be thinking of you and your family.
XClaire

I have used a mouthwash called difflam for mouth ulcers when bad..in case that is of help to you
 

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Dear Karol, Another big scare for you both and your Son.

Cuddles to all of you.
One thing with your Son,maybe, ( I have a boy of 21, girl of nearly 18 and have given a home to many teens over the years. My Husband and I love teens and twenties they are so rewarding) In my experience, however sensible your Son is, you may have to reassure him on the same points quite often. With Luke, although I explained and was upbeat about things he still had the feeling he didn't "know all about it". It is as if they really cannot absorb it all at once.
He found it very hard for a long time if anyone asked what I was ill with. He never felt up to explaining properly and if people made silly remarks(as some do) he used to be really angry. You and your Husband have a lot to come to terms with. Does your Son have a sensible friend who can support him?
The plus side is that we have met many wonderful, accepting people who are totally tuned in. The more comfortable you can be with it, the more successful you will be at helping family and friends to understand. Not always though, sometimes we still feel cut to ribbons by silly remarks. There is no doubt, what you and your family are going through is a big deal. I will be constantly hoping you will find ways through this.
x Lola
 

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Hi Karol,
I can't give any better suggestions than you have already had. I am sending you positive thoughts for your entire family. Hopefully your husband is settling down with his illness and yours will calm down as well.

When I had a lot of ulcers in my mouth I found anything which contained mint oil was calming. Perhaps it will work for you as well.
Sally
 

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Karol,

Just wanted to send you some good thoughts and prayers...I am so sorry for all that you have been through in the last few months. I am hoping your husband is released soon.

Good luck with your test as well..keep us posted.

Sharon
 

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Thanks for all of your replies. My husband will be coming home tomorrow at some point so at least I will not have to be running back and forth all day between my home responsibilities and the hospital.

He will remain on antibiotics for 10 days orally and also pancreatic enzymes to help digest food. In 3 months they will do another CT scan and Ultrasound and by then, fingers crossed, things should be much better.

I did call my Rheumatologist to tell him about the drastic hair loss and the mouth ulcers. He told me to buy GlyOxide at my local pharmacy. It is liquid and you swish it around in your mouth. I have used it 3 times today and already things are starting to calm down. I am so grateful. I knew if I did not do something then there was no way I could go for the scope on Monday. I think by Monday I should be able to eat soft foods again so this is a blessing.

After the scope I will go on oral steriods to also aide in healing my mouth and hopefully calming down inflammation too. It should help with hair loss but it is not guaranteed. I will try anything at this point before I buy a wig.

Thanks again for the replies and I am heading to the bed........I am simply exhausted. I hope you all have a good nights rest.:wink2::wink2::wink2:
 

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Karol,

I'm so sorry to hear that your husband has had to go back to hopsital. I'm not surprised you are exhausted.
Sending you lots of hugs and postive thoughts.
Elle x
 

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Discussion Starter #11
Thanks Elle.

Chuck has come home, I have rested up and I am feeling human again.:)

Fingers crossed he will continue to improve and life will get back to normal again.:wink2:

Thanks to everyone who replied to this thread and all of the well wishers that have said prayers.

It is very much appreciated.:wink2:
 

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Hi Karol,
I really feel for you, you really have has such a rough ride.
I was so sorry to hear that you are feeling awful and your husband is so ill.
I am relieved now though that things are looking up.
I hope you both continue to improve.

Good luck with your scope too.

I hope you manage to get atleast a bit of r and r and your husband is feeling better soon

Good Luck and Take Care

Cassie :)
 

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Thanks Cassie for the kind words.

We are both doing ok, fingers crossed.

I hope your well too.:wink2::wink2::wink2:
 

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Karol, im so sorry you are going through a rough time right now. i definetely have my fingers crossed for you and your husband. im happy to hear that the rollercoater has almost come to a stop. i know exactly how that feels.

wishing you and your family good health for a long long time :):):).
 

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Wow Karol, what a scare that must have all been. I'm glad he and you are both doing better and certainly hope it stays that way.

Annette
 

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Discussion Starter #16
Sushi and Nutty..................THANK YOU!!!

I can only hope that moving ahead in 2009 it gets better as we go along.

So far it has been a horrific roller coaster ride and I want off this ride NOW!

I hope your both doing well.
 
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