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Posted 12/29/2008 10:23 PM (GMT 0)
they last anywhere from 24 hours to a week but most of them are 24-36 hours. I have seen a lot of people with this lately. Sheer hell for a 24 hours and then it goes away. It is just that we all think it is crohns since it usually is. I don't ususally vomit with my flares, do you? that is why i think that it is a virus- whcih we are predisposed to getting because we have no immune systems to combat it.

Posted 12/29/2008 11:59 PM (GMT 0)
No, you're right...I don't vomit either and nausea is not a typical symptom for me. It seems to have subsided and things are much better today. The appointment went pretty well I think. I'm down to 105 lbs again so finding higher calorie but safe foods is a main priority at the moment...GI just said to stay the current course and we'll see how things go.
Maybe Spring will bring us great health :)
Posted 1/3/2009 6:13 PM (GMT 0)
happy new year lmills
how are you feeling?
Posted 1/4/2009 1:39 AM (GMT 0)
Happy New Year :)

I'm all right...starving to death on the scd though! I'm down to 104 lbs at the moment and had a bad night after only eating a chicken breast and a banana with mascarpone(which is probably illegal) and honey. So...I'm trying really hard to stay on it, but it doesn't seem to be doing much except keeping me thin haha. I want bread so badly :( Or something in my stomach..It's so difficult to afford any food allowed on the diet right now.
How is everything going for you? Did your humira shot make a difference this time?
I'm thinking about just going gluten free or...limiting my bread intake until things get easier. How do you manage to find the ingredients for your cooking?
Posted 1/4/2009 12:40 PM (GMT 0)
Well, scratch feeling completely fine at the moment. I've had to get up between 2-4 times every hour for BM's and horrible stomach cramps. I just want to sleep!!!!
I hope you're faring better than this..
Posted 1/4/2009 8:36 PM (GMT 0)
i am having a horrible time. i hade the humira 3 days ago and i have had nothing but abd pain since. last night i went to bed at 6 pm and didnt get up til it was time to go to work this am- i had chills and sweats all night and have had a low grade fever today- i dont know if it is the humira or something crohn's related. i am not having a lot of d,. just pain. i am really tired of this

Posted 1/4/2009 9:00 PM (GMT 0)
I know...:( I really hope this is just that point where we feel more ill because of the bacteria dying off in our intestines. I have been having a midway point between D and solid but very often and accompanied with the same old cramps...

http://www.scribd.com/doc/3154417/Specific-Carbohydrate-Diet-SCD-diet-Allowed-Foods
I thought this was a pretty interesting report on the SCD. It's a little bit more in depth than what the book has to offer.
You have a job though wow! I have been trying to find one that isn't too taxing on this condition but everyone has requirements they simply cannot let go i.e. lifting at least 50 lbs throughout the day or constantly running back and forth long, LONG distances. And these are retail jobs where you stock small household ornaments or even office jobs..
The only way I have been getting by this past week is with the prednisone, imodium, and bentyl cocktail along with the other regular meds. I wonder if we just need to be taking a higher dosage of humira if it isn't the released endotoxins by the bad bacteria that are supposed to be disappearing...
Posted 1/5/2009 5:40 PM (GMT 0)
what is weird is that i have been having drenching night sweats for the past 2 nights and the pain is really intense. I am working again today but am considering going to the er after work. this pain is relentless and i have been living on ensure. i hate to go to the er, but am concerned that it may be an abscess forming.
Posted 1/5/2009 6:07 PM (GMT 0)
Night sweats are indicative of something going awry in many cases anyway I believe...please, don't wait too long if it gets worse :( Backtracking on your progress is the last thing you need..
Posted 1/5/2009 9:10 PM (GMT 0)
i am going to the er in the am if it is not better. i don't know how i work either- i have no choice- no family or other means of support. i have a job with a bathroom close by- it is a low stress job for the most part. i will keep you posted. it is nice to have a pen-pal with the same issues- makes me feel not so alone.

Posted 1/6/2009 3:04 AM (GMT 0)
Well, I admire your ability to keep moving forward in spite of the debilitating symptoms...I'm glad to hear you're going in if this keeps up, but I'm really, really sorry that it has to come to that at all...you'll be in my thoughts. I so hope you can get better..
And yes, I have to agree. I wish that a lot of us didn't have to be brought together this way, but I'm so thankful that were all here for each other in the ways that we can be.
Posted 1/8/2009 2:09 AM (GMT 0)
thanks for your support- i went to the er and they found....nothing. I think they thought i was making it up to get drugs (which did not really help anyway). that or it was a reaction to the humira. today i went to see a neurologist who injuected local into my laparoscopy scar in case there was a nerve that was trapped that was what was contributing to the pain. that did not help. i am now on stronger pain meds, but i still cannot get comfortable. i can't understand how something that hurts so much that i cannot walk at times, and causes me to break out in sweats can not be visible on a cat scan. i am afraid to eat anything. i have eaten 1 cup of cream of rice and i peeled apple in the last 3 days, along with a couple of ensures. i am researching celiac plexus blocks now. How are you?

Posted 1/8/2009 2:28 AM (GMT 0)
Is there another doctor or hospital that might be able to see you? Have you found any relief at all through any of your medication?...Maybe you need a liquid diet or something...That helps me sometimes.
I've gone free of gluten, wheat, refined sugar, high lactose dairy, bleached/bromated flour lately and it seems to be making a difference.
Low residue is good sometimes too, but I know there are times where some of these things simply do not work!!
I also mix mashed banana, yogurt, a spoon of organic peanut butter, and honey together and eat a small amount of that to get the sugar cravings out...
I just wish there were something that could be done YESTERDAY for you. This isn't fair..
Are you on any prednisone at the moment?
Posted 1/8/2009 2:59 AM (GMT 0)
i broke down and took 20 of pred. i need to start a PPI- is opemprazole helpful? my ulcers are in the duodenum, jejunum and prox ileum. i found a lactose free cottage cheese which i eat with applesauce- i need to use organic applesauce. i made chicken soup and will try that tomorrow. i am starting back on codliver oil as well.
back to work tomorrow...
hope it is not too busy
have a good one,, and thanks always for your kind words
Posted 1/8/2009 11:46 PM (GMT 0)
Omeprazole is tremendously helpful for me in keeping acidity down as well as the problems I had with a hiatal hernia.
Have you ever found dry curd cottage cheese anywhere? I look everywhere and no one seems to carry it...even the specialty health food shops..
I'm sorry you have to go back to work, but it's pretty amazing that you're still able to. Please don't overexert yourself! x_X
I started the new semester today...I am TIRED and the cold doesn't help with headaches and throat stuff.
Do you notice any more infections after taking humira? I can't really tell yet...or at least differentiate between its effects and the cold weather's.
I found some really good pomegranate apple sauce from some big brand company, but supposedly it is just the fruit with no additives or anything. It's pretty good, but I guess we have to stay suspicious of most brand name products..
Posted 1/9/2009 2:43 PM (GMT 0)

I think that i had a serumn sickness reaction to the humira. i called my gi and she said that she wants to give me one more dose and if i do the same thing or fail to show improvement, she will take me off of it. that is kind of sucky because i will then be on nothing except 5 mg of pred a day. i also am supposed to go to St. Maarten for a medical conference and i dont want to be serum sick or in pain on the beach. we shall see.

i am checking out getting a block of the celiac plexus- (the nerves that supply the small intestine) to help with my pain. that is my main symptom and it has really taken a toll. say a prayer, if that is something that you do. i hope that your classes go well- are you taking a full load? sometimes it is better to ahve something to keep you busy, especially if it is not too physically taxing. keeps your mind off of things.

i have not found that i pick up things any easier whilst on the biologics. the only thing is that shen i get sick, i get really sick. i got a little boil under my arm last year and it put me in the icu for almost a week.

stay well-

Posted 1/9/2009 4:05 PM (GMT 0)
Oh dear...that's the LAST thing you need! Will they not put you on any maintenance medication like asacol, pentasa, etc.? Surely there is something you can take aside from humira and prednisone...
I had never even heard of a block for the celiac plexus until you mentioned it. Will you be able to undergo this soon? I just am amazed that you are lasting the way you do on so little. A testament to the power of the mind I think..

I'm taking 14 hours I think which is just over full time(12). I wanted to take more with maybe a precalculus class or something, but I am afraid of overdoing it and backsliding from the stress you know? Tempting but perhaps not quite enough.

A boil?? Did it just appear or was it definitely a side effect of one your meds? That's awful!
Have you been able to eat anymore or get rest? I hope you're not working too many hours at your job..
Posted 1/9/2009 10:56 PM (GMT 0)

i was colonized with MRSA as a result of 2 years of working in an emergency dept. i nicked my underarm while shaving and it turned from a little irritation to a huge cellulitis. really scary.re: eating i am still concentrating on cream of rice and ensure. i am just too scared to deviate. i don't have much of an appetite, which is good because i gained 30 LB on steroids.

i am so hoping that my trip to st maarten will be pain free!

good luck on your classes.

Posted 1/10/2009 12:00 AM (GMT 0)
Ah, that would explain it..I was afraid to ask because that's what it sounded like. We had a TERRIBLE staph outbreak on my campus last semester. I had never seen something spread so quickly. I avoided it somehow, but I felt really terrible for the students who caught it.
I can understand not wanting to venture into different territory with food. It's a shame there isn't something besides ensure that you can drink to get vitamins and calories though...I've really noticed a difference being off of it for a while. We'll see though I suppose..I don't know if you can have them or not but popsicles were always nice when things turned rough. They do have the high fructose corn syrup in them though..

I hope so too :) Good luck with your things as well!
Posted 1/10/2009 12:33 AM (GMT 0)
Survivor and LMills - I am very glad that you two have found you have mutual interests and enjoying sharing with one another. This thread will soon reach 50 posts. At that point we normally lock threads. If the subject is of interest to people, then we have the originator start a PART II if they wish. In the case of this thread, I'm going to ask that you two continue your conversation via another medium, either email or chat since you are the only ones participating here. Thanks -- Ides
Posted 1/11/2009 7:29 AM (GMT 0)
lmills if you are interested in keeping in touch, sendme a pm with your email address and i will write you bacc. i hate to lose touch- esp since we are kindof  in the same boat medically

Posted 1/11/2009 2:55 PM (GMT 0)
I tried but it won't let me send you any messages...I have my email on my profile though :). I also use things like facebook and livejournal(but I know a lot of people hate these!!).
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