Remicade Blues

[roebutm1]

Hi all. Only being diagnosed this past may with Crohns and Celiac disease I've been trying to learn so much about both as fast as I can. Per my Doc, my Remicade treatments are the way to go and i get them every 6 weeks, along with taking about 21 pills a day. I'm not going as much each day, but I'm still having bad attacks and I just plain feel bad all the time. In July I maybe had 3-4 decent days. I'm tired all the time - sleep sleep sleep, my body feels 2 tons heavy, my stomach hurts or feels sick, some days my legs are shaky and I feel very weak, if I don't have thrush, I have sores at the corners of my mouth. I know my immune system is weak; but is it normal to feel so bad even when my bowels are a little better? I found a gluten-free mega women's vitamin I started to take and a supplement to boost my immune system and I'm pumping myself with about 1000mg of Vitamin C every day. When I had 2 decent days this week I though -yipee I found a combination that will make me feel better; but since Tuesday I am so tired I can barely stay awake to drive to work. Trying to work with these two autoimmune diseases is tough. Everyone keeps telling me to go out on disability; but I'm really trying not to. Appreciate any support or suggestions you might have.

 

[Jennifer]

Its gonna take time to start feeling better even if your intestines are doing a little better. You have two conditions that affect your ability to absorb nutrients so that's a double whammy not to mention the combination of all of those medications. Dealing with being tired all the time isn't surprising. Attempting to get on disability isn't out of the question. I'm considered disabled myself and I only have Crohn's. I receive SSI and it does pay the rent, bills and for food. Its something you could also try until you get back into remission and on your feet again. Not being able to drive yourself to work because you're too tired is just the start. Chances are you're too tired to work as well let along do housework at home once you get back. It sounds like you could use a break until you're feeling more capable but trying for disability is completely up to you. I hope you start feeling better soon.

 

[roebutm1]

Thank you Crabby!

 

[Ravs23]

I was just (officially) diagnosed with Crohns this spring too (although I was tested for it 3 years ago, and the doc never followed up). I am experiencing a lot of weakness, lightheadedness, lethargy etc. too. Before my diagnosis my doctor attributed all of this to hypothyroid and put me on levothyroxine, but I honestly could never tell a difference. After I was hospitalized for the Crohns, another doctor finally tested my blood cell/hemoglobin count and found it was so low they wanted to do a blood transfusion. I opted for an iron infusion instead, but had a severe reaction to the iron (dextran) after 3 minutes of the 6 hour infusion. So now I take an iron supplement, sometimes 3 times a day (If I can remember), and that really seems to help with my tiredness/dizziness. I just had my first round of remicade yesterday, and my doc says that my iron levels will go up on their own once the inflammation in my GI tract starts to subside. If you haven't already, check out your hemoglobin levels. Taking iron might not be a 100% fix to your lethargy, but it couldn't hurt.

 

[roebutm1]

Thank you Ravs23

 

[25times]

I was diagnosed with crohns back in April. I was in and out of the hospital so often, that I couldn't even work part-time. My employer was understanding, but my landlord was not. The bills kept coming, and I kept getting sicker. The third time I was hospitalized, a social worker came in to talk to me. My doctor wanted me to go on disability, so that I could stop worrying about missing work and start worrying about getting better. Plus, I was just too weak to do my job. So the social worker helped me apply for disability, and I was approved at the end of July. Just in time too, as I started flaring again about 2 days before they told me I was approved. It's such a weight off your shoulders, not having to worry about money or missing work. Right now, I'm helping out a family friend by babysitting his two kids from 5am to 12pm. I'm finding it hard to even do that. I don't want to let anyone down, but I was put on disability for a reason. My doctor basically told me to rest. All day, every day. And now I have these two kids here, so I can't do that. I really can not afford to let my health suffer just to help someone out. He knows how sick I am, and that I can't do much with them, but still.
I guess what I'm trying to tell you, is don't push your health off to the side so you can continue to work, pay bills, clean the house, ect.. It might take a while for you to realize this, but your health is THE most important thing in your life. Whenever I start to stress out about not being able to pay rent, my mom says "You can't pay rent if your dead." I know crohns doesn't cause death, per se, but you know what I mean. Take some time off and let your body get used to these illnesses. And medications. And everything else we have to deal with.
Feel better soon

 

[roebutm1]

Thank you Samantha

 

[Silvermoon]

One thing to remember - the Remi and other meds slow down your immune system, but you are taking "immune boosters" - becareful what you take, as now you are counteracting the "healing" effects of the medications........

I also see you mentioned VitC but not B12. Alot of us CD patients (and to have Celiac on top of that) lack absorbing enough B12. Try some over the counter, or get tested for B12 deficiency, as this can make you very tired and seek as well.....

I realize this post is a bit old, but I thought I'd throw those items in there, just incase you were still around to read it lol.