Hello. I am still among the living

[greenbriar]

I have had a really rough go of it.

I went to the hospital the day before Thanksgiving

spent 13 days in the hospital and even had surgery.

I have Crohn's that did not does not respond to normal therapy. It seems that my body was attacking my pancreas as well as my colon attacking itself.

I am down to 93 pounds as I can not eat anything that will stay down.

I have been put on ensure and could still be looking at a feeding tube.

Because I have not responded to normal treatment I have been put on Remicade which is a chemo type drug. Even tho it is not for treating cancer, it still has some of the same side effects. I washed my hair yesterday and there was quite a bit in the drain.

Round two of the remicade is being scheduled for today or tomorrow, depending on where insurance says I need to have it done either in the doctor's office or as an outpatient in the hospital. I have really bad swollen veins from the hospital (I think the doctor said it was called phlebitis) so I don't know where they are going to put the new IV for the remicade.

Because the remicade destroys your immune system, I have to be very careful about getting sick. I don't know how I am going to work. I am off until Jan but my doc said yesterday he didn't know how I was going to work and take the remicade. Yesterday he really put all the cards on the table and I was very discouraged.

[Arugula Latte]

1. greenbriar -- I'm so very glad you're still with us!

I've been wondering how you're doing. I'm so very sorry about the awful time you've had -- That is a lot to bear. It's just not fair, but there you have it.

I don't have any words of wisdom, just :hug: :grouphug:

[CaliforniaPeggy]

2. My dear greenbriar...

My thoughts are with you...

Isn't there some way you could get on disability or some such, so you don't have to worry about working? You cannot work.

You need to get well. That is obviously the priority.

I suspect that with your veins being uncooperative, you would be a candidate for a PICC line. That is, an intravenous line that is inserted into a large vein in your upper arm (or someplace like that) that then feeds into an even larger vein near your heart.

Do what you need to do, no matter how awful it might look now, so that you can get your life back!

We are here for you, sweetie...

:hug:

[greenbriar]

6. we are working on the disability angle. It is somewhat less than my salary tho

so we will have to pray that a miracle happens. I am sure even with our insurance that we will be in dire need once the bills start rolling in. My stay in July was almost 30 grand and that was just 4 days and no special procedures. This time around is 13 days with surgery and chemo. I am scared beyond all belief.


The IV team talked about a PICC line when I was in the hospital and said that if I have to go in again, they would push for one. That scares me.

Thank you for all the support

[CaliforniaPeggy]

8. I'm glad to hear your update...

Don't worry about the money...get well first!

And the PICC line? No big deal. My friend WCGreen had one when he went home after his hospitalization for pneumonia.

You could PM him to ask how it worked out.

It's a much more stable line, and much less likely to not work.

:hug:

[JohnnyLib2]

3. Hurray, you are posting.

Fingers crossed and all good wishes for 2010 to be better. :hug:

[fizzgig]

4. i hope the docs are able to get this under control

good wishes to you :hug:

[LeftyFingerPop]

5. And you will remain among the living.

You will NOT let this defeat you, Greenbriar.

You have been through a lot, and there is more to do to take care of this, but you will NOT let this defeat you.

Stay as positive as you can and call up your inner strength.

I'm sending you good wishes... :hug:

[firecrackerfilms]

7. sorry

I hope everything gets better soon

[Prisoner_Number_Six]

9. I've been on remicade for about 6 years.

It's also used as an arthritis treatment. Never had any reaction in all those years. My immune system is a tad weak, but simple precautions keep the bad stuff away. I still consider myself fairly healthy.

Good luck.

[greenbriar]

10. I have been guilty in the past for posting too much info so if it seems that way

I apologize.


I consider you my friends even tho we have never met. I am thankful for you all and the encouragement you give. Some days it is easier to vent here and hold things in at home.

My husband loves me very much and is trying to be strong, but I know he has fears too.

[A-Long-Little-Doggie]

11. I am so sorry you are going through all of this.

Sending healing vibes your way. :hug:

[graywarrior]

12. Oh man, that is really awful.

Wish I could do something to help. Not being able to eat is the worst. I hope you start to improve soon. Did they say how long you'd need to be on Remicade?

[greenbriar]

13. He said every 8 weeks after the induction time which started 2 weeks ago

I don't know if it is for a year or lifetime

[graywarrior]

14. Are you open to changing your food?

Even tho you cannot hold food down, there are some foods that could help if you take them pureed. I can help with that if you want.

[greenbriar]

15. Lay it on me!

I will try anything

[graywarrior]

16. I will PM you.

[greenbriar]

17. thank you

I think it is worth it

[ThomCat]

18. I'm thinking of you and hoping for the best.

:hug:

I'm very glad that you haven't needed that feeding tube yet. I hope that good news continues.

Is the Ensure helping? Are you finally getting enough nutrition?

I know that not working is a big financial hardship, and you don't want your job to be at risk by being out too long, but still, this is your health at risk. Please do whatever you need to do. Stay out of work as long as it takes to make sure you are healthy. If you go back to work too soon with a compromised immune system you could be taking a huge risk. :(

[GreenPartyVoter]

19. :^( *gentle hug* I hope this remicade stuff does the trick and in a hurry so you can

get off of it and get your health back.

[Capn Sunshine]

20. Explore alternatives to that chemical

The winter is no time to have no immune system. If you have the energy, ask your Dr. what alternatives look like.

Just my personal view. I fucking hate chemo type drugs. Many doctors have told me they do it because of insurance issues , ie it's the accepted discipline. As an MD if you vary from that all kinds of things kick in which make doctoring more difficult.

But that aside, it's nice to have you back. :hi:

[greenbriar]

21. it has come to my attention that many think I am lying about this illness

I assure you that I am not, nor have I ever lied about anything here.




If I were going to lie about an illness, I surely would have picked one more glamorous than Crohn's



But think you all for your encouragement and well wishes. Today did not seem so bleak.

[Arugula Latte]

23. WTF?!

Why would someone think you'd make this up?

What is wrong with people?

:wtf:

[Stephanie]

25. Ignore them

Focus on getting better. Anonymous creeps at DU are just that. You and I know very well they will get pizza sooner or later. Sometimes we are just ahead of the curve in sniffing out trolls. Eventually the mods always catch on.

I hope you feel much better very soon. Will be thinking of you. xxS

[greenbriar]

27. you are right

and thank you very much

[emilyg]

33. Ignore those people. Good to

see you posting.

[supernova]

22. Glad to see you again, Greenbriar!

:hug: :hug:

I was thinking about you and wondering how you were. I hope the remicade will start to work and you will feel better in the near future. How awful to be sick for the holidays. :-(

Please do vent, that's what we're here for.

:hug:

[greenbriar]

24. Thank you. I did not even have a thanksgiving

we were supposed to go to my inlaws but I was in the hospital instead with my IV and no food


I just pretended that bag of stuff was mashed potatoes and gravy


It is so hard to think about Christmas right now, my daughter and her boyfriend came and put up the tree, but all I could do was watch.

I am trying to do my cards but it is taking all day. I just get really fatigued.

[denbot]

26. Sorry to hear about the treatment progress.

My doctors have determined that I have a pancreatic divisi, which is why I've had reoccurring bouts with pancreatitis. I am waiting for the surgical team at the V.A. to let me know if they think that they can "repipe" me. I hope your treatment goes better in the near future.
:hug:

[greenbriar]

28. Thank you and sorry about your situation. Pancreatitis is very painful

about the worse thing I have ever faced.

I will be sending good vibes your way as well

[struggle4progress]

29. Ouch! Stay upbeat and hang in there!

[libodem]

30. So very sorry to hear you've been so sick

I hope the treatment is effective.

[kimi]

31. greenbriar, I don't know you

But I recognize courage when I see it.

My very best wishes for you and all of your loved ones, for the holiday season and all seasons.

[astral]

32. My prayers will be with you.

I hope you can drink lots of clean water, and I hope you get some help with what are the best kinds of things to eat to help your body heal itself.

[Broken_Hero]

34. I'm glad that you are still with us.

I hope that things health wise start taking a turn for the better, and that you start feeling more "like yourself."

:hug:

[Dogtown]

35. greenbriar

You may find this page useful, a Crohn's sufferer very involved in the medicinal cannabis movement:


http://www.michellerainey.com/

[greenbriar]

36. Last night and today has not been very good

I have some major pain


probably due to the fact that it is time for my next remicade infusion and the insurance is playing their game.

I hurt really badly so I probably won't be on here much, I plan to just sleep.

[greenbriar]

37. I have had a rough 2 days. If I lose more than 5 more lbs I am going to be put on a feeding tube

the pain has been tremendous and insurance is taking their time approving the second round of Remicade.

If they don't do it soon, I will be admitted back to the hospital and have it done there. I do not want to spend Chrismas in the hospital. It was bad enough spending Thanksgiving there.

[femmocrat]

38. I'm so sorry for what you are going through, greenbriar.

You have really been through hell. I hope and pray you will start to improve soon and regain your health. :hug: