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hannahleigh89 posted:
Second surgery in my series of three is scheduled for October 21st at 2PM. My incision from the first one is finally closed all the way, as of two days ago. I'm still extremely tired all the time. I started B12 shots at the end of last month, but I've only had the one so far, and it isn't helping yet, of course. I figure it'll take time to get things built back up.

Anyway, I'm doing fine. Just wanted to let everybody know about surgery number two. In this one, they're taking out the rest of my rectum and constructing my pouch. I'll have an ostomy for another 6-8 weeks after that surgery, at least. And the surgeon said Friday the 1st that he's still not sure it was UC. He said it looked like UC, but the pathology of my colon also indicated Crohn's. So I could go through all this and end up back in the same position, but we'll see. I'm trying to remain positive.
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OyWithThePoodlesAlready responded:
oh wow Hannah, I do hope that this makes things better for you! You're such a strong woman!
 
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mindyj1971 responded:
I'm glad to hear that your incision finally healed up!

Are you ready for surgery? I'm getting ready to call my surgeon and talk to him about removal of my colon and rectum. I just can't stand this anymore:( I can not get off of these steroids and it is killing me to keep trying to taper. I just can not function. I had a Remicade infusion last week and I have been down since. Tonight, I am running a fever a little over 100. I just can't keep putting my body through this.

Like you mentioned, I'm afraid to have the surgery because it could pop right back up in my small intestines and then where does that leave me? I just know that they gotta do something. I feel like I am no longer living....just surviving. It's so rough on the whole family when I am down for so long. My husband had to call of of work tomorrow so that I can get some rest. The steroids have my sleep all out of whack:(

Anyway, didn't mean to turn this around to all about me; I was just curious if you were ready to just "get it over with" or how you felt about the whole thing. I'm ready to surrender my guts to this just to have a little bit of life back. I also feel like it is the biggest decision I have ever had to make and it is tearing me apart. I just don't know if I will be able to handle it if the disease comes back without giving me 5 minutes of relief. It has happened 2 times before, so the odds are against me going in. I really just hope that they do some imaging and tell me that I don't have a choice, but that would be too easy.

Please keep us posted! I'm anxious to hear your thoughts on more surgery.

Take care-Mindy
 
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hannahleigh89 replied to mindyj1971's response:
I was told that I didn't have a choice, Mindy, so that did make the decision a lot easier. I'm not sure I would be able to make it in your shoes. It's so hard because like you said, you don't even know if you'll get any kind of relief from it.

As you said though, I can't imagine all that prednisone has done anything good for your body. Your body has got to be so torn up by now; I don't know how you ever get anything done, woman!

I'm really nervous about the next surgery because my surgeon told me on the 1st that this one is the important one. If something goes wrong with the pouch, all of this has been for nothing. So between that and the thing about them still having no idea what I have, I'm really anxious. I've tried talking to the boyfriend about it, but he's too busy with work to hear much of what I say lately, it seems. But I'm okay. I am ready to just get it over with.

And anytime you wanna talk about you, I'm all ears.
 
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kaj2313 replied to hannahleigh89's response:
Hannah, I don't have a clue what you are going through right now. I'm at a loss for words. I can imagin your boyfriend feels the same way. He has stuck through this so far. I'm guessing he is scared and unsure of how to help you cope. I know you have your Mom, but I understand the frustation of him not seeming to be there for you.

Hang in there you are such a strong women. You seem to be handling thing very well!

Keep us updated!
 
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arbob5 replied to kaj2313's response:
Mindy and Hannah...I have so much respect for both of you. What you are going through and how you're handling it is unbelievable. We are all very proud of you and wish there was something we/I could do for you both to make things easier. My prayers will be with both of you all the time.

God bless and hang in there! Luv you both!!!!
 
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mindyj1971 replied to arbob5's response:
Thanks Arbob! You always have such encouraging words! We are all fighting our own battles....my prayers are also with you:)

I will be seeing my surgeon in 2 weeks, so I'm sure the combination of that upcoming appointment and my steroid use, life with Mindy is gonna be fabulous to those nearest and dearest to me! LOL! What a ride!

Take care and big hugs to you!
Mindy
 
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arbob5 replied to mindyj1971's response:
You have such a positive attitude, that you will come out of this really well. I have no doubt about that at all. I know it's hard to say "whatever will be was meant to be"....that's always tough to say to yourself, but it seems like it's the only way to cope with what we all have. We make the changes we have to and must make, and adjust to whatever situation we're given.

You and Hannah are inspirations to everyone. Thank you and God bless. LOL to both of you, and of course, to your families.
 
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miserable_sob replied to arbob5's response:
I just hope they diagnosed you correctly Hannah. I've heard of so many cases already where they've misdiagnosed UC for Crohns or the other way around. Since I've heard of this happening so many times, I'd get a 2nd or 3rd opinion or even more if need be.
 
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hannahleigh89 replied to miserable_sob's response:
I've had several opinions. The most recent ones were fairly sure it was UC up until he got in on Thursday and found a lot of inflammation and adhesions in my small intestine. I haven't talked to my GI doctor about it yet because I'm still in the hospital, but even if it's Crohn's and not UC, the treatment plans for my case would have been nearly the same so far. My colon was too far gone to recover, and the medications for neither disease had been working. The only difference will be that now I'll have to continue screenings and the fight instead of getting to be cured.

Anyway, I was mostly just updating to say that I should be leaving the hospital today. The pain medication combination that my team decided on was Fentanyl patches, percocet, and oxycodone. I can't take the percocet more than every four hours because of the Tylenol and we all know what extra Tylenol will do, but with the oxycodone, I can take a percocet or two and then a couple hours later, take another oxy or two if I need them.

I'm supposed to get my JP drain pulled before I go home, so that'll be great. I hate the drains so bad... But anyway, I just wanted to let everybody know what the plan was for me. Hope things are going well elsewhere.
 
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arbob5 replied to hannahleigh89's response:
Only three words....GOD BLESS YOU!
 
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mindyj1971 replied to hannahleigh89's response:
I'm so glad that they have your pain meds figured out! You will rest so much better at home:)

Thanks for giving us an update; I've been thinking of you a lot these past few days. You have had such a roller-coaster ride for quite some time now. I'm hoping that relief is just around the corner for both of us with these drastic surgeries we have to go through:) It just has to work this time, right?

Hang in there and keep us updated as you can:)

HUGS-Mindy
 
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shanna_02 replied to hannahleigh89's response:
Hannah,
Good luck with everything and you are in my prayers that it goes good for you!
 
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OyWithThePoodlesAlready replied to hannahleigh89's response:
hope you had a good day and made it home successfully!
 
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Elizabeth_WebMD_Staff replied to hannahleigh89's response:
Hannah,

Glad you are going home, sorry with so much pain and pain medication to manage it.

I am sure you know the trip out of the hospital and home will leave you exhausted and uncomfortable so please rest, rest, rest. I wish we could all be there to pamper you!

Keep us posted on how you are doing and how you are coping with things,
Elizabeth


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