Update--Monnie is home!
Dear Friends and Family,
The last two days have been a rollercoaster. As many of you know Monday after meeting with the Doctor we met with a surgeon to discuss removing Monnie's Colon. Then we met with a nice lady that would help Monnie learn how to use the colostamy bag. The surgeon was going to try and get us in this week.
Monnie and I discussed over and over and after many stressful tearful discussions decided to go through with it.
Then yesterday morning her doc got there early before I could get there and told her that her tests were all coming back more normal than he thought they would be.
He wanted to get her an infusion of remicade and have her try to eat solid food, she had not nbeen able to eat, too much pain, since last thursday.
She was able to hold down a pb&j last night. I got there extra early this morning as to not miss doc. if he came in early.
I had many questions, thank you Doc for your patience with a stressed out husband.
He had reviewed all the tests and has now ruled out c-diff, also now he really thinks this is not a true "flare" of the disease but possibly just her mediaction wearing off or a viral infection or some ibs on top of her disease which makes it really hard to narrow it down to which. At any rate he had us do remicade so he got us to check out of hospital and she got remicade right away. He said no reason to stay in hospital and to get her home where she can rest and recover.
She is home in bed now and just ate some food. Her color is returning to her face and the proof will be in the next hours and days and weeks that follow that will tell us if her disease is still in remission and this was something else or if it is returning.
So this is great news she still has her colon and as long as she has the colon there is always hope for a cure.
At the same time I cannot tell you all how down Monnie was yesterday, she had her mind wrapped around this surgery and was ready to be done with it and drug free, although she would have no colon, the disease would be gone.
I want to thank you all for all of the prayers, thoughts etc. It really seems a miracle right now that she is home I believed Monday night surgery was all but certain
We will know much more if she can recover and stay healthy for the next few treatments meaning the next 6-12 weeks we should know for sure if the medicine is working or if this was a true flare. That will be the main factor of whether or not she will have the surgey or not. While there are side effects from these strong drugs. It has really goiven Monnie her life back these last 3 years . Also they just came out with the first longterm study on the side-effects of remicade and it was very positive-no ill effects were proved to be from the drug in other words the control group and the treated group had virtually the same issues so they think it's a fairly safe drug . Early reports and rumors were that the side effects were horendous and caused cancer, lupus, ra and others. Now she does have very bad arthritis but that is also a symptom of the disease so it's hard to say if it's the drugs or the uc.
Anyway, that may be more than u cared to know but I want you all to know how she's doing and honestly it's very nice to have email. It certainly is a little easier than last time Monnie was sick. Before when I didn't use email or use Monnie's Facebook I bet I repeated these updates 50 times a day .It starts to feel like your whole identity when ur very sick.
Thank you again for all the prayers and for your friendships. It would be so hard to go through this without all of your support.
Now let's hope and pray she just gets better and does great. I also believe the saying not sure it's a verse, "once God starts a work he finishes it". and I'm believing that he is going to heal her one way or the other. She is one special tough girl.
Shannon
The last two days have been a rollercoaster. As many of you know Monday after meeting with the Doctor we met with a surgeon to discuss removing Monnie's Colon. Then we met with a nice lady that would help Monnie learn how to use the colostamy bag. The surgeon was going to try and get us in this week.
Monnie and I discussed over and over and after many stressful tearful discussions decided to go through with it.
Then yesterday morning her doc got there early before I could get there and told her that her tests were all coming back more normal than he thought they would be.
He wanted to get her an infusion of remicade and have her try to eat solid food, she had not nbeen able to eat, too much pain, since last thursday.
She was able to hold down a pb&j last night. I got there extra early this morning as to not miss doc. if he came in early.
I had many questions, thank you Doc for your patience with a stressed out husband.
He had reviewed all the tests and has now ruled out c-diff, also now he really thinks this is not a true "flare" of the disease but possibly just her mediaction wearing off or a viral infection or some ibs on top of her disease which makes it really hard to narrow it down to which. At any rate he had us do remicade so he got us to check out of hospital and she got remicade right away. He said no reason to stay in hospital and to get her home where she can rest and recover.
She is home in bed now and just ate some food. Her color is returning to her face and the proof will be in the next hours and days and weeks that follow that will tell us if her disease is still in remission and this was something else or if it is returning.
So this is great news she still has her colon and as long as she has the colon there is always hope for a cure.
At the same time I cannot tell you all how down Monnie was yesterday, she had her mind wrapped around this surgery and was ready to be done with it and drug free, although she would have no colon, the disease would be gone.
I want to thank you all for all of the prayers, thoughts etc. It really seems a miracle right now that she is home I believed Monday night surgery was all but certain
We will know much more if she can recover and stay healthy for the next few treatments meaning the next 6-12 weeks we should know for sure if the medicine is working or if this was a true flare. That will be the main factor of whether or not she will have the surgey or not. While there are side effects from these strong drugs. It has really goiven Monnie her life back these last 3 years . Also they just came out with the first longterm study on the side-effects of remicade and it was very positive-no ill effects were proved to be from the drug in other words the control group and the treated group had virtually the same issues so they think it's a fairly safe drug . Early reports and rumors were that the side effects were horendous and caused cancer, lupus, ra and others. Now she does have very bad arthritis but that is also a symptom of the disease so it's hard to say if it's the drugs or the uc.
Anyway, that may be more than u cared to know but I want you all to know how she's doing and honestly it's very nice to have email. It certainly is a little easier than last time Monnie was sick. Before when I didn't use email or use Monnie's Facebook I bet I repeated these updates 50 times a day .It starts to feel like your whole identity when ur very sick.
Thank you again for all the prayers and for your friendships. It would be so hard to go through this without all of your support.
Now let's hope and pray she just gets better and does great. I also believe the saying not sure it's a verse, "once God starts a work he finishes it". and I'm believing that he is going to heal her one way or the other. She is one special tough girl.
Shannon
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