Guest guest Posted February 4, 2005 Report Share Posted February 4, 2005 Dear Debbie, I'm so sorry you daughter is having such a rough time with EN. I got my first bout of EN while a university student on summer vacation. I don't think I could have gone to class while in active flare up. Is your daughter getting bedrest? I know that is just about impossible while a student, but it does seem to be important for many of us to finally get into remission. Since EN can be a delayed hypersensitivity reaction, she must consider anything that could be causing this worsening of symptoms. We have a file on the Group site that lists many known causes of EN. Let me mention that there are many others that have not been yet identified. http://health.groups.yahoo.com/group/erythema_nodosum_Group/files/Causes%20of%20\ EN/ Click on " Triggers and Causes of EN " to see the list. Has she tried SSKI? If that doesn't bring about a remission, her doctor may want to try enbrel, but that is not approved for EN and is quite expensive. We have only anecdotal info on enbrel so far, but it is encouraging. Since some forms of epilepsy meds have induced EN, perhaps a different brand would work for her. Since many of us find stress induces EN, your daughter may wish to take some time off from school to rest and relax. I know this is not what she wants to hear, but sometimes we just need to stop and take care of ourselves. Keep reading, as we are always learning on the Group site. Love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2005 Report Share Posted February 26, 2005 Jayn, I tend to go with, let them have what they want as long as it won't hurt them. I don't worry about long term affects, but the immediate affect. They have very little control over their lives and this is an area they can control. I haven't had to face this, my Mother still tries to eat reasonably. I guess 6 Pepsi's doesn't really hurt, but it does seem like a lot of caffeine and sugar. It's always a hard decision to know what to do. Good Luck, in Dallas > > > DO WE LET OUR LO EAT ANYTHING OR DO WE TRY AND KEEP THEM ON A GOOD DIET. > RUTH WAS AFTER HER 6TH PEPSI LAST > NIGHT ABOUT 11PM. OF COURSE IT WAS LATE AND MY LAST NERVE WAS GONE, WE HAD > A SHOUTING MATCH, SHE GOT UGLY > AND I GOT KNOTS IN MY STOMACH. > Soooooo WHAT IS THE ANSWER. I NEED IMPUT INTO THE SITUTATION, MY HUSBAND > SAID LET HER HAVE WHATEVER SHE > WANTS. > > JAYN > IN S GA > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2005 Report Share Posted February 26, 2005 jayn, if ruth isnt diabetic or for other major helth reasons cannot drink pepsi then fight about it, but my logic is, if my dad wants to eat or drink anything (accept alochol) i dont care. i figure it is one food or liquid and something is better than nothing. there will come a time when he will refuse to eat/drink anything so i ay as well let him eat/drink whatever he desires. hope this info helps. hugs sharon m From: jja52538@... Date: 2005/02/26 Sat PM 08:54:22 EST To: LBDcaregivers Subject: HELP DO WE LET OUR LO EAT ANYTHING OR DO WE TRY AND KEEP THEM ON A GOOD DIET. RUTH WAS AFTER HER 6TH PEPSI LAST NIGHT ABOUT 11PM. OF COURSE IT WAS LATE AND MY LAST NERVE WAS GONE, WE HAD A SHOUTING MATCH, SHE GOT UGLY AND I GOT KNOTS IN MY STOMACH. Soooooo WHAT IS THE ANSWER. I NEED IMPUT INTO THE SITUTATION, MY HUSBAND SAID LET HER HAVE WHATEVER SHE WANTS. JAYN IN S GA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2005 Report Share Posted February 26, 2005 Jayn, Sorry to hear you had a rough day with Ruth. I'm all for providing them with a good diet and letting them have treats but I would agree that 6 Pepsi is a bit much. I'm not much of a pop drinker but perhaps there are drinks with low sugar and caffine that she can have. My dad has diabetes and the man can go through a case of diet pops like its going out of style. My sister and I have pretty much given up where his diet is concerned. Hang in there Jayn. Courage jja52538@... wrote: > > > DO WE LET OUR LO EAT ANYTHING OR DO WE TRY AND KEEP THEM ON A GOOD > DIET. > RUTH WAS AFTER HER 6TH PEPSI LAST > NIGHT ABOUT 11PM. OF COURSE IT WAS LATE AND MY LAST NERVE WAS GONE, > WE HAD > A SHOUTING MATCH, SHE GOT UGLY > AND I GOT KNOTS IN MY STOMACH. > Soooooo WHAT IS THE ANSWER. I NEED IMPUT INTO THE SITUTATION, MY > HUSBAND > SAID LET HER HAVE WHATEVER SHE > WANTS. > > JAYN > IN S GA > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2005 Report Share Posted February 26, 2005 Jayne, My mom got what ever she wanted to eat. (I was not dealing with diabetes) It was not one of the things I had no intention of fighting about. There are so many other things. Every night for supper she wanted ice cream with chocolate and lots of nuts. And as long as she could eat it, she got as big a bowl as she wanted. I figured her pleasures in life were few enough. Donna R Re: HELP Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2009 Report Share Posted February 17, 2009 Tonight... my mom went in for an emergency surgery for blockage. I am in Seattle...she is in FL. I don't have the whole story... but apparently they removed SIX FEET of neucrotic bowel. I assume...this is from the side that brings down the bile? The doctor couldn't tell us for sure? (This is my worst nightmare) Anyway... does their have to be a certain number of inches for the BILE side? As long as the food side and the common channel is intact are we ok? I'm terrified. Ginger.. if you are out there reading this... this is I am talking about. You can email me at: kymberly@.... I'm looking for tickets to florida right now. --Kym in Seattle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2009 Report Share Posted February 18, 2009 > > Oh Kym > > I wanted to add..if you get to go to be with your mom...take a diagram > of the DS to help you explain it to the Doctors and hopefully nail down > what segment they removed. > > Hugs > Jo > Well we of course made sure they had the diagram... and that it was scanned into her chart. And clipped to her shirt as they wheeled her in. However this idiot didn't take the time to really understand which part he was cutting... but rather just saw necrotic bowel and apparently just " cut " . I guess to him it didn't make much difference. It was the " small " bowel. And I think it's the bilopancreatic limb... I think. Im not sure. But it does make me feel good to know that we can still make all this work. Im scared. Im leaving for FL in the morning. THis is about as close to my worst nightmare as it gets when it comes to the DS. Thanks Jo. (((hugs))) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2009 Report Share Posted February 18, 2009 I cannot answer your question, but I will be praying for God's healing touch on your mother... along with strength and peace (along with tickets to Florida) for you through this difficult time. Elle Help Tonight... my mom went in for an emergency surgery for blockage. I am in Seattle...she is in FL. I don't have the whole story... but apparently they removed SIX FEET of neucrotic bowel. I assume...this is from the side that brings down the bile? The doctor couldn't tell us for sure? (This is my worst nightmare) Anyway... does their have to be a certain number of inches for the BILE side? As long as the food side and the common channel is intact are we ok? I'm terrified. Ginger.. if you are out there reading this... this is I am talking about. You can email me at: kymberly@.... I'm looking for tickets to florida right now. --Kym in Seattle Quote Link to comment Share on other sites More sharing options...
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