Mourning my Friend Michael, lost to untreated Crohn's complications

[Mountaingem]

:depressed: My dear friend Michael Smith died yesterday of liver cancer. He was only 58 and a newlywed. We could laugh about all the ups and downs of Crohn's, and he always called just when I needed it most.
He had Crohn's but was only on Pentasa for the last year. He had all the signs, but up until two years ago the doctors would only treat him when he was admitted to the hospital.

He had been in undiagnosed purgatory for so long the Crohn's did it's worst, and his untreated Primary Sclerosing Cholangitis (PCS) just progressed into liver cancer.

My heart is so heavy for his wife and family. I know it's selfish but I also can't help but think this could have just as easily been me. My doctor wouldn't treat my CD aggressively enough either.

I had been hospitalized for dehydration 5 years ago when my GI ambushed me into a colonoscopy. He found Stage 1 colon cancer; I was just fortunate they found it early.

Now I have a colonoscopy every two years. In November I go back for my five year biopsy, and I'm praying it's gone for good. We were going to celebrate if I got the all-clear.

I'm pretty shook up. It's such a waste. If his doctors had only given a damn this might not have happened.

I'm sharing this because I know he would want others to learn from his life. If anything good can possibly come from Michael's loss I'll use his example to remind everyone to fight your doctors as hard as necessary to get the treatment you need.

If you need motivation or feel like you just can't do it anymore, please remember my post...we don't deserve to be ignored until the worst happens.

 

[Cat-a-Tonic]

I'm so sorry to hear it, Jeannette. Big hugs to you at this sad time. Thank you for sharing your friend's story.

 

[Earnellzwifey]

i am so sorry for your loss. it is all to often that people do not get the proper treatment that they need, when they need it. i hate to hear of situations like this. I hope his family can even get some form of relief from this tragedy.

 

[HorseLover!!]

I am so sorry for your loss, :hug: people often do not get the proper treatment that they need when they need it, it is awful to hear a situation like this :ghug:

 

[KWalker]

I'm so sorry for your loss. I think I'm going to make an appointment to go back on medicine.

 

[DustyKat]

Oh my Jeanette, :hug:. I am so very sorry to hear about your friend. What a very difficult and heartbreaking time for his family and his dear friends.

You are so right, no one should be ignored when it comes to this disease. I too have seen the dangers of what untreated disease can do and like you we were fortunate to catch it just in time.

Thinking of you, :heart:
Dusty. xxx

 

[Kip1]

Jeannette I am so sorry for your loss.

 

[Perfer]

im so sorry for your loss Jeannette, big hug from Norway

 

[prplkow]

So very sorry. =(

 

[Catherine]

Sorry to hear.

 

[Mattannika]

Jeannette, I am so sorry to hear this and so sorry for your loss! It makes me mad to hear how so many doctor's just don't take people serious. I have just been diagnosed very recently, one month ago now. Noone took me seriously at the beginning. I had to push and push them to take a blood test to finally realize I wasn't acting and to find the inflammation. Luckily at that point they began to take me serious and scheduled tests for me and diagnosed me. So finally I can do something about it. Sorry to be rambling on, but it's so upsetting, not everyone is as fortunate and I pray something changes so everyone gets better treatment they so deserve.

 

[Mountaingem]

I'm so sorry for your loss. I think I'm going to make an appointment to go back on medicine.

I'm so glad you're considering it-I've seen you on this forum for awhile now and I would hate for you to suffer unnecessarily.

 

[KristinaB]

I'm so sorry for you're friend and your loss.

 

[Mayflower537]

Very sorry to hear this. Hugs to you.

 

[skylardaisy]

I'm very sorry for your loss.

 

[Mountaingem]

Thanks so much guys. I just feel like his loss is such a waste-he was so positive, upbeat no matter how sick he felt. Never negative, always had a kind word for everybody...and he's gone, all because some doctor wouldn't just get over themselves and treat him, already.

His wife called today and they found he had Crohn's ulcerations on the outside of his bowel and liver, which is how he always had so-called normal colonoscopy results. Too little, too late.

It's just heartbreaking. What exactly has to happen before doctors will start actually listening to their patients instead of trying to prove you're lying about being sick???

Sorry if I'm ranting but I'm so upset...

 

[Kip1]

Jeanette I really do feel for you & your friends family.
I know this Is spouting religion but In this case it seems that God chose an angel wisely, your friend sounds like he was a lovely person.
I think that those we love never really leave us. I would like to think also that they help keep us safe & guide us somehow to make better choices in life.
The fact that the aim of your thread was not only to remember your friend but to encourage others to seek further help, take charge of there illness & not put up with poor care is testament to both you & your friends character & humanity. If reading this thread has encouraged at least 1 person to seek further help then you may have already changed someones life for the better.
You are always offering your support & kindness on this forum. Please accept all of the support you receive here & take time to grieve & rant as much as you need & don't apologise for any of it. We are here for you if you need us.
Take care Jeanette x.

 

[Kip1]

How are you doing Jeanette?

 

[CheerBear12]

I'm so sorry to hear the loss of your friend. Your in my thoughts and prayers at this difficult time. Big hugs he will be looking down on you xxxxx

 

[Mountaingem]

Thank you Kip and Cheerbear12. I am OK, grieving and just trying to be supportive of his family. I started flaring just due to all the stress, I think. I went to the funeral and it was very diificult for his wife, they were newlyweds.

I appreciate your posts because I've kind of gone MIA, I tend to do that, internalize everything, which of course is a bad way to deal with it. Thank you for reminding me it's OK to let it all out, and for your support. You guys are the best

 

[CheerBear12]

I'm also grieving as well so know the feeling hope your ok and flare up subsides xx

 

[Ihurt]

I am so sorry about your loss. His family should sue the crap out of the doctors who neglected him. That is so awful. You are in my thoughts and prayers...

 

[Mountaingem]

@ Cheerbear Thank you, I am sorry for your loss. Being on pred sure doesn't help with the emotional rollercoaster. You take care of yourself, too

I hope they will, they are just still in such a state of shock, his poor wife is just adrift. I don't feel it's my place to push her but I wish she would, if not for herself at least it will teach the doctor a lesson, hopefully, in the only way they seem to understand-the wallet.

 

[Novice]

I'm so sorry. It's scary to think this is the result of trusting someone as highly regarded as specialists... Disgusting to think our lives are at the mercy of people who do not seem to consider the consequences to those family members let alone the patient themself.

I hope she teaches that doctor a lesson too!