After lining my side of the bed with towels and having pretty much the worst night sweats I have ever had...my wife challenged me this AM with a statement that went something like this "I know the Dr. is holding out alot of faith on this Humira working but I don't know if it really is." I paused to reflect and have to wonder myself. The pain has been getting worse and the night sweats are back. I am fresh off a shot Friday night too...so usually I am doing OK at this point.
About this time last year (before I started this Crohn's Blog), I had to go on a liquid diet and ended up not being able to eat at Thanksgiving or Christmas). I lost about 12 pounds...that might be the only good part.....and spent about 5 days in the hospital.
Anyways, crazy week at work. Just took on responsibility for all of our marketing (was just doing online portion) and am working on 2008 business plans and budgeting. Fun times!!
Enough bitching, lets all have a positive week. -Scott
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7 comments:
Hi,
I have just taken up the blogging habit as well here in the UK. My wife has Crohns disease and we found it very difficult to find reliable information on the impact nutrition can have on the condition. There are plenty of sites offering miracle diet cures or supplement pills. However, there is a distinct lack of practical advice and evidence-based knowledge available to the public.
So we have decided to do something about it, starting with posting a blog on wordpress. My blog is under my name, Paul Mander-O'Beirne. I'd appreciate it if you took a look and let me know if you find the information of use to you. Feel free to post a comment.
I look forward to hearing from you.
Regards
Paul
Tuesday Nov. 20th 3 pm Anita wants you there. They worked you into that appt. Booked solid thru holidays but will not let you go with out being seen. They don't want another year like this past one.
I will meet u there. I love you.
Ames
I was having a pretty rough time a few weeks ago and was on Torodal to control the pain twenty four seven. Had blood work done and a scope and they only found scarring from the Crohns. I have since then been put on Imuran and Asacol just to see if that will make a difference. It is a week later and the pain is alot more controlled...not gone...but controlled. However I am getting the side effects of the Imuran with the nausea and loss of appetite. Sometimes I am not sure what is the better of the two evils...any suggestions as to how to get passed this point? Especially when they do blood work and never find anything wrong?
Any feedback would be greatly appreciated!
Niki
Hello I am 24 and I have been diagnosed with crohns since aug of 2006, the funny thing is had stomach issues at the age of 16 and lost a lot of weight and back then the doctors thought i was starving myself and was in and out of the hospital every two weeks with them trying to figure what was wrong. I somehow gained all the weight back and stop going to the doctors i was in remission until 2003 i went to the local health clinic that the college provided and still nothing until last year i went to GI doctor and i was relieved to find out that i wasn't making up the pains like everyone thought. Being African American 5'2 and cant put on more than 115 it is hard to maintain the weight. No one in my family has been diagnosed with Crons so reading these forums makes me feel like i am not alone. I have been in remission for a year and now i am having flare ups again. I was admitted into the hospital last year and was given a blood transfusion as well as still on Asacol and Remicade after i was released i slowly started to feel better and gain some weight. what i at one time took for granted with what i could and could not eat i swear some people are lucky. I am still going thru the trial and error stage with my food. But defin. know milk ( i use lactose milk with my cereal), cheese, spicy foods, anything that might be hard to digest, but other than that i am still trying to figure out. I have been drinking ensure as well to get some extra calories but i want to know if there is more that i can do. I keep hearing people say that they are liquid diets what is that exactly? Being on remission for that year was the best time in my life and i really dont want to go back down that road of always going to the bathrooms and not being able to go out and not being able to fit in my clothes the way i want. I just wanted to vent and this site is a perfect place for it. Thank you for being here.
Niki -
Thanks so much for your post. I know what aggravates my Crohn's and it is very similar to your list...but I am horrible at saying no to the wrong things! Email me anytime to talk (wwwchachi@ gmail.com).
Liquid diets - To me it is literally eating no solid foods....ensures...strained soups...etc. Personally it makes me feel very healthy and "light" versus bloated....very good technique if you feel yourself slipping into a flare up or are in the middle of one.
Thanks again for "joining" us. -Scott
Hi - I'm a fellow crohnie who just found your blog and have been enjoying reading it. Just felt compelled to respond to this post because in 2005 I needed surgery and was put on complete bowel rest in November, so I too spent the holidays unable to eat!!! Isn't it the worst?! Sitting there watching everyone eat! And it makes everyone else feel bad too. Went through Thanksgiving, Xmas, and New Years on TPN. (Have you ever been on that? Not fun!!) I couldn't believe how much of the holidays revolve around food. Just enjoyed eating all the more this year. :) Keep up the good blog - I'm sure I'll continue reading.
Melissa
15 yrs with Crohn's (wow... has it really been that long?!)
Hi, 24 year old male from FL here. I've been dealing with UC/Crohns for the past year and have been hospitalized 3 times. I have had TPN, blood transfusion, and I too was miserable during the past holidays. I have been on every kind of medicine imaginable. Nothing has worked till I tried Remecade. It successfully put into remission all crohns/UC symptoms, but gave me a severe knee reaction, and now I can't take it. I'm trying Humera for the first time tonight. I hope that it works as well as the Remecade did with out the reactions. Also, has anyone else had kidney stone problems right after or during a flare up?
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