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feeling lousy too often!

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Crohn's Disease
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Posted 8/30/2007 3:56 PM (GMT 0)
hello everyone. I 23 y/o female diagnosed with crohns for about a year. Went through pred, pentasa, flagyl and cipro, and now methotrexate once a wk. I fell crappy most of the time from the side effects and now my next step is remicade. I was wondering what helps you guys get through the bad days (seems like more bad than good lately) and if anyone has had success with the methotrexate or the remicade. confused
Posted 8/30/2007 5:08 PM (GMT 0)
Well, I can say that the last year has been one thing after another for me. Seems like every time I go to the Dr. something else is wrong or messed up.... I don't neccessarily feel like crap physically all the time, but mentally it can be a challenge. I try and count my blessings - this may sound crazy. But it helps me to be thankful that even if I don't feel great I am still here and get to enjoy my family and friends. Also I read this board and I see how everyone else is and often there are people way worse off than me and it helps me keep perspective. Hope that you get feeling better physically soon and that you find a way to get through this.
Heather
Posted 8/30/2007 7:40 PM (GMT 0)
I am often exhausted, mentally and physically from the disease. I struggle w/ missing work due to flares and feel frustration that no one understands my disease. Just because I look fine on the outside, doesn't mean by body isn't in turmoil on the inside. :(
Posted 8/30/2007 10:12 PM (GMT 0)
I just had a B12 shot and am feeling great!  It might help. I was exhausted all of the time.
Posted 8/31/2007 12:21 PM (GMT 0)
Hi Have you had your B12 checked? Sorry your worn out.What kind of meds are you taking and have you tried low roughage diet that is easier on the intestines.I guess not many can understand this disease unless they have it we are here for you .I try to keep myself happy with doing special things for myself I spent many years thinking of what my teen needs so now I do some things for me like buying bird seed. Makes me happy actually call them the bird children so I guess I like looking after something and they are so easy to care for.lol gail
Posted 8/31/2007 1:42 PM (GMT 0)
Cherriepie are you taking the Methotrexate in pill form or shot? I heard that the pill can make you extremely nauseous, but the shots don't. I was supposed to start the Methotrexate shots today, but had to cancel because my stupid gut won't tolerate the Folic Acid supplement. So now I am back to square one. Also, B-12 is great for the fatigue.

God Bless,
Gail *Nanners*
Posted 8/31/2007 7:35 PM (GMT 0)
hey nanners, i am getting methotrexate in the form of a shot. The pill form was never offered. Now that the methotrexate has made me so sick and I am at a standstill with this medication they are leaning towards remicade.
Posted 8/31/2007 7:47 PM (GMT 0)
hey gacrohns! I was taking pentasa, tried imuran but developed pancreatitis, tried asacol, was on pred for a while, and currently I get an injection of methotrexate once a wk. The methotrexate makes me feel awful though. What is a roughage diet? The doctor told me that I am very anemic and that my potassium is low and that could be the reason that I am so tired all the time and that could be why I feel so dehydrated. I have been in the hospital so many times and I don't want to got back unless I really have to, so I am trying my best to keep hydrated by any means necessary. It really is hard I have missed so much work and a lot of people think that it's just another stomach ache!
Posted 8/31/2007 10:51 PM (GMT 0)
Hi Cherriepie -

I understand how you are feeling. I recently had to make the decision to go on Remicade because I was having more bad days than good. I was in a flare for more than 6months and was getting progressively worst with increased medication. So in July I had no other options but Remicade.

So far, I have had 2 infusions and will have my 3rd infusion on 9/6 and have been doing very well. I have been feeling better and having more energy that I have had in the last year.

You have to do what is best for you but know I really understand how you are feeling.
Posted 8/31/2007 10:57 PM (GMT 0)
Hi,  I take Methotrexate by injection weekly and remicade every 6 weeks double dose.  I feel so much better.  It took a while and I still have bouts, but it's much better.  I work from home now and have aleviated a lot of stress, this helps.  I stick to strict diet and excercise and sleep alot!  Hang in there, I used to be sick daily, now just a few days a month. It will get better!  I have been on these meds for about 3 years.  I try and eat before the injection, I tend to get nauseated.  Best Wishes, Janice

Posted 8/31/2007 10:59 PM (GMT 0)
P.S. It took a while to get used to the Methotrexate for me, they started low dose and slowly increased, same with the remi. I lost a bit of hair, but nothing major.
Posted 9/1/2007 12:48 PM (GMT 0)
Hi Cherrie Low roughage diet is foods that are easily digested white bread ,minced meats, fish , well cooked soft veggies,they are foods that are easy to chew, no nuts, seeds, raw fruit a dietician helped me alot with my diet.I had a low potassium level too was on ensure for awhile helps alot and is great if you cain't eat a meal.I am on Remicade it has helped me alot just had my fourth IV and BM's have been great and passing air is good. Bloating down so that feels better. I ate banana bread for the potassium and whipped potatoes are great and very soft. I even switched from jams to honey and jellies because of the seeds in jams. Hope this helps you lol gail
Posted 9/4/2007 4:30 PM (GMT 0)
I just want to thank all of you for your suggestions and for listening.  Sometimes this crap really makes you feel alone and feel like NO ONE understands!  I've only been a member for a short while, but this time has really helped me feel better.  I go to have my second opinion today and hopefully we can start to make some progress.  Today is an ok day.  Hope everyone is doing well! :-)
Posted 9/4/2007 8:47 PM (GMT 0)
Glad to hear to today is going ok - hope you have at least a few more "ok" days. Good luck with your Dr/s appt.
Posted 9/4/2007 9:27 PM (GMT 0)
Hi Cherriepie............

My daughter, now 18 was also at one time on Methotrexate, then Remicade.................uggg, now on Humira shots.  Very easy as I give them to her at home.  With Remicade, you have to have that infused which generally is a days worth of your time.  Ask your dr about Humira :):)

Colleen in CA

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