Oh Supa, I am so sorry you are going through this. You are always in my thoughts, and I hope you are able to get permanent relief soon.

Thank you again all. Just an update-things are deteriorating here. I just can't get the blood loss under control. I am going to call him first thing in the morning and see if we can't go ahead and try the remicade, but if not, I will likely need to be admitted to the hospital in the next few days.

I'll keep you all posted as I can, and thank you again for your many prayers.

Supafly wrote:

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Thank you again all. Just an update-things are deteriorating here. I just can't get the blood loss under control. I am going to call him first thing in the morning and see if we can't go ahead and try the remicade, but if not, I will likely need to be admitted to the hospital in the next few days.

I'll keep you all posted as I can, and thank you again for your many prayers.

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 i'm sorry to read this.  i hope it gets better soon...
sending many, many prayers...

Supafly wrote:

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Thank you again all. Just an update-things are deteriorating here. I just can't get the blood loss under control. I am going to call him first thing in the morning and see if we can't go ahead and try the remicade, but if not, I will likely need to be admitted to the hospital in the next few days.

I'll keep you all posted as I can, and thank you again for your many prayers.

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so sad to read this

laura, I'm praying for you!!  Stay strong girl {hugs}

Supafly wrote:

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RedHawk wrote:

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I saw you posting here and thought, "oh no..."

I'm sorry. It sucks. Many prayers for you.

I can tell you a bit about immniosuppessents from when I was on them. I think they were what caused my hair to thin. I didn't lose it all or in chunks, but it did thin. It's been a while, but I'm pretty sure that's what did it. Came back in darker with a bit of a wave. LOL. I had blood tests weekly while on it. Caught Mono. You have to really be careful while out and about. Back then there wasn't hand sanatizer everywhere...It has been 15? years since I was on them, so they may be different now.

Pred is just sucky. No way around that. But, you do get hair growth with it... LOL Have you been on it before? Try keeping your house darker for the headaches. The light seemed to make me feel worse.

I know it is so crummy to be a sick Mom. Don't feel guilty. You're sick. It's not your fault. It sucks. That's life. Families take care of each other. I know, I know, so much easier to type then to live. Hearing Andrew say something to DH about me being sick, hurt, fragile, whatever just rips my heart.

IDK if you've mentioned, but how much of your colon is involved now? Is it the whole thing, or just part? Do you have other options at this point or do you need to wait for the other Dr?

 

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Thank you all so much for your continued thoughts, prayers and support.  I am exhausted, so this will be brief, but know that I really appreciate the outpouring of love I feel here.

Victoria-I have been on pred before and it was an absolute nightmare.  Just awful-and right now I am in the beginning stages where not all of the really bad effects have even started up yet.  I just hate this drug.

As for the colon involvement-mine has been left sided down to the rectum, but I am feeling like the transverse is now involved as well.  I haven't had a colonoscopy to show that, but it is just how I am feeling now.  It is worst starting on the left side definitely.  I do want to ask him about surgery as a possibility as well (and thank you for the PM as well).

Right now, I think the options are to wait it out and get started on the immune suppressor (which doesn't sound appealing since that seems to be a long haul), up the pred dose to try and improve things until we can get started on the immune suppressor or try Remicade, which if it works, will be temporary, but might get me feeling better faster.  And I am anxious to see what the integrative doc says as well-but like Crystal said, I know that will not be a quick fix either.  I am just not sure what the best route is to take right now.

 

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The fact that it's "just" the left side is prolly fantastic news. You've been battling this for a very long time. Maybe if it isn't salvagable, they could get by with just removing  part of your colon. IDK. I know that it can spring up on the other side, put maybe if you got rid of what can't be controlled, it could help.

Totally not "pushing" surgery on you. It is hard. Very hard. But, when you are fighting for your life, you've gotta do, what you've gotta do to live.

Have they checked your blood to see how anemic you are from blood loss? Have they talked about transfusions?

Do you need anything? Can we do anything? We're praying for you.