Guest guest Posted January 9, 2008 Report Share Posted January 9, 2008 So how is your husband doing these days? Is he getting better? Debi > > On the naltrexone thing debi - my husband and I have > both been on it for quite some time with no apparent > effects for good. I have had none for bad either, but > he had a horrible reation, while he was on naltrexone > and they introduced a new medacine to him while he was > in the hospital called Mercapetepurine(6mp for short). > When he had the reaction, they gave him Ativan to help > him calm down and regulate his heart and such and it > sent him into a terrible epesode. It was very scary. > He does not remember any of it, but it took nearly 24 > hours for him to even know who he was or were he was > and to respond appropriately to questions asked of > him. > I almost had a heart attack, thinking of the > possibility of loosing my husband or almost worse yet, > having to care for him being crazy and not knowing who > I am in addition to raising my 3 with autism. Of > course I would do it, but I definately think I would > have needed some help. I am not that strong. I > honestly had 3 grey hairs the next morning and I am > only 27, he is only 27 too > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2008 Report Share Posted January 9, 2008 Yes Debi, He is! Thanks for asking. He started back at his job on Nov. 30th after not working for a year due to his crohns. The doctors have not done anything really to change the situation, they do not know what to do. I do not blame them as he has some of the top specialists for the Nation working on his case here at OHSU and they told us that they are completely stumped. They have consulted with the top specialists and have all put their heads together. We have thankfully been heard and noticed and they have had us meet from specialists all over the place from UC and Chicago and so on, and yet none of them know what to do differently. They had him on every trial study available, and he has already tried everything that is FDA approved, we have tried about 10 various diets including the elimination diet and NOTHING worked. Finally they just put him on everything under the sun. He is on Remecaid every two weeks, which is an infusion and is supposed to last for 8-12 weeks and is $5000 - $6000 a shot. They have him on Mercapetepurine (6mp), Cymbalta, Asacol, Entecort, and three others that I can not remember the name of right now. Even after being on all that, for almost 2 months, nothing was working and he was having 12-16 bloody BM a day and sleeping almost non stop and had gotten down to 179 from his healthy 200 and finally we just asked all of our friends and family and you guys and church members and temples and everybody that we could think of to pray for him. We begged god to help us ourselves as well as all the other prayers on our behalf and after a few weeks of everyone praying like that, my hubby told me that he felt like God wanted him to go back to work. This time it was me who did not believe and said, " Are you a lunatic? You can't even function or help out at home let alone go back to a full time job " He told me, that he knew it sounded crazy and that it is always usually him, who is the skeptic, but that he knew that God wanted him to go back to work and he would get better. He started back on Nov. 30th and nothing else has changed since then, and suddenly only like 5 days after he started, his BMs started decreasing. They lessened progressively and have continued to do so until now he is only having around 5-7 BMs a day and most of them are blood free. That is so better than the 16 that he was having and the cramping and blood that he was having with them. His doctors last time let him see how long he could go without the Remecaid, as he was getting it every two weeks, and he is on week 5 now and has not worsened at all yet. We are really realizing the hand of God in things and in our lives and we are seeing that there is NOT mere happinstance or luck, this world is way too intricate to believe that, and when things like this keep happening, when we have tried all else, I truly think that the Lord is trying to show us of his mercy and his power and trying to teach us to trust in him. I know there will be people who will not see it that way, but then maybe they too will have to suffer first, to see God's love and strength. And I don't really care what they believe, because " As for me and My house " we believe in Miracles (on a regular basis and in modern times). Thanks again for asking. And how are things for you? How are you doing in your schooling? How is Allie? How is your hubby too? Your BIL that passed away, was that his brother, or your sisters hubby? How are things going for everyone due to that? How is Allie handling it? Let me know how you are. Esther --- Debi wrote: > So how is your husband doing these days? Is he > getting better? > > Debi > > > > > > On the naltrexone thing debi - my husband and I > have > > both been on it for quite some time with no > apparent > > effects for good. I have had none for bad either, > but > > he had a horrible reation, while he was on > naltrexone > > and they introduced a new medacine to him while he > was > > in the hospital called Mercapetepurine(6mp for > short). > > When he had the reaction, they gave him Ativan to > help > > him calm down and regulate his heart and such and > it > > sent him into a terrible epesode. It was very > scary. > > He does not remember any of it, but it took nearly > 24 > > hours for him to even know who he was or were he > was > > and to respond appropriately to questions asked of > > him. > > I almost had a heart attack, thinking of the > > possibility of loosing my husband or almost worse > yet, > > having to care for him being crazy and not knowing > who > > I am in addition to raising my 3 with autism. Of > > course I would do it, but I definately think I > would > > have needed some help. I am not that strong. I > > honestly had 3 grey hairs the next morning and I > am > > only 27, he is only 27 too > > > > ________________________________________________________________________________\ ____ Looking for last minute shopping deals? Find them fast with Yahoo! Search. http://tools.search.yahoo.com/newsearch/category.php?category=shopping Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2008 Report Share Posted January 9, 2008 Great, and praise God!!! I was so worried it was the end for him, I'm SO VERY glad he's getting better. I'm doing fine, started back to school today, taking 18 hrs <grrr>. Just had my first medical law class, not to thrilled with the teacher, he's an attorney & a pharmacy professor, he's pro drug companies all the way, I've already disagreed with him several times in 1 3 hr class, lol. The girls are fine, we're going to the Y now with Shanna here on the board & her family, look out world, us two middle aged women are gonna be hot, right Shanna? <g> Debi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2008 Report Share Posted January 9, 2008 What is the Y? Sorry I just didn't get that part. Esther --- Debi wrote: > Great, and praise God!!! I was so worried it was the > end for him, I'm > SO VERY glad he's getting better. > > I'm doing fine, started back to school today, taking > 18 hrs <grrr>. > Just had my first medical law class, not to thrilled > with the teacher, > he's an attorney & a pharmacy professor, he's pro > drug companies all > the way, I've already disagreed with him several > times in 1 3 hr > class, lol. The girls are fine, we're going to the Y > now with Shanna > here on the board & her family, look out world, us > two middle aged > women are gonna be hot, right Shanna? <g> > > Debi > > > > ________________________________________________________________________________\ ____ Never miss a thing. Make Yahoo your home page. http://www.yahoo.com/r/hs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2008 Report Share Posted January 10, 2008 In a message dated 1/9/08 10:05:44 PM Eastern Standard Time, mike_esther_smith@... writes: us > two middle aged > women are gonna be hot, right Shanna? <g> > > Debi you are already beautiful. for the person you are. the hotness is just iceing on the cake eric abbys dad **************Start the year off right. Easy ways to stay in shape. http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489 Quote Link to comment Share on other sites More sharing options...
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