I never knew a person could go to the bathroom as much as I have been and continue to do so. I've had 3 remicade treatments thus far and my next one in in July. I either can't eat at all or anything I do eat goes right through me unless I pump Immodiums like candy. I've lost 50lbs which is great but all I do is go and go. Even when I have better days I'm always always so tired. I either can't stay awake or have insomnia. Having Crohn's & Celiac Disease both I am very limited as to what I can eat! I live on italian ice and minute maid push pops! Mmmmmm! Any supportive feedback is appreciated!:yrolleyes:
Always in the bathroom & always tired!
- Thread starter roebutm1
- Start date
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Cat-a-Tonic
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Hi, welcome to the forum and sorry to hear you're not doing so well. As far as getting some calories & nutrients into you, have you tried any of those supplement drinks like Boost or Ensure? I know for sure that Ensure is gluten-free, as my mom decided to go totally GF recently and she drinks Ensure fairly regularly. Not sure about Boost but I'm sure it'll say on the label. When I flare up, I live on things like Ensure, mashed potatoes, plain rice, etc.
I've never been on Remicade, but my limited understanding is that it should have started working by now? I get the impression that it's not working at all for you. Have you told your doctor about this? What other treatments have you tried?
I've never been on Remicade, but my limited understanding is that it should have started working by now? I get the impression that it's not working at all for you. Have you told your doctor about this? What other treatments have you tried?
David
Co-Founder
Welcome to the forum. I'm sorry you're having so much trouble though, you poor thing 
You may want to check out our diet and fitness forum for some ideas as well our our Remicade Club since you're taking that.
I hope you're able to find improvement soon. I wish you all the best.
*hugs*
You may want to check out our diet and fitness forum for some ideas as well our our Remicade Club since you're taking that.
I hope you're able to find improvement soon. I wish you all the best.
*hugs*
Answers to your postings
Dr still wants me to continue to try the remicade. I was taking 22 pills a day for my Crohn's & Celiac. I'm down to about 14 pills (just for this condition): Pantessa, Prednisone (when I'm no on Endocort, Align, Cancer fighting drug to help the remicade, B-12, Multi-vitamin, Vit-D plus other meds for other issues. I'm eating a gluten free/dairy free diet + no chocolate, fried foods, raisins, beans, some raw veg, and now no onions.
The fatigue is really getting to me. I'm so tired all the time.
I take a look at the stuff you guys suggested. Thank you for your well wishes!
Dr still wants me to continue to try the remicade. I was taking 22 pills a day for my Crohn's & Celiac. I'm down to about 14 pills (just for this condition): Pantessa, Prednisone (when I'm no on Endocort, Align, Cancer fighting drug to help the remicade, B-12, Multi-vitamin, Vit-D plus other meds for other issues. I'm eating a gluten free/dairy free diet + no chocolate, fried foods, raisins, beans, some raw veg, and now no onions.
The fatigue is really getting to me. I'm so tired all the time.
I take a look at the stuff you guys suggested. Thank you for your well wishes!
xJillx
Your Story Forum Monitor
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Hi Roebutm1 and welcome! I don't have first hand experience with Remicade, but as Cat mentioned, I would think it would have started to work by now. If you don't see improvement after the next infusion or two, I would certainly discuss other options. Some do have better results with Remicade when used with 6MP. So, there is a possibilty. Also, have you tried Humira? Some who don't respond well to Remicade do well with Humira.
Of course, I hope your next infusion really gives you some relief. But if not, I hope you will be able to find the right treatment for you and soon. Hang in there!
Of course, I hope your next infusion really gives you some relief. But if not, I hope you will be able to find the right treatment for you and soon. Hang in there!
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Welcome, Roebutm1:
Sounds like you've had the loading doses of Remicade and now starting on the maintenance. As David said, there's plenty of info on the Remicade thread. Some people feel an immediate effect when they go on Remicade; my first experience with it was that it was only after my fifth dose that I began to feel the effect of Remicade.
Tiredness and fatigue makes life so much harder. Eating more might help and meal replacement drinks like Ensure that Cat mentioned help. Also, have you had blood work done to check whether you're anemic? If you're going to the bathroom often, it might be that you're losing blood as well.
I hope your next infusion gives you some relief---if you're getting them every 8 weeks, you could also ask your doctor if you should be getting it every 6 or 7 weeks. Or it might be a better idea to stop the Remicade treatments and try another biologic like Humira.
Sounds like you've had the loading doses of Remicade and now starting on the maintenance. As David said, there's plenty of info on the Remicade thread. Some people feel an immediate effect when they go on Remicade; my first experience with it was that it was only after my fifth dose that I began to feel the effect of Remicade.
Tiredness and fatigue makes life so much harder. Eating more might help and meal replacement drinks like Ensure that Cat mentioned help. Also, have you had blood work done to check whether you're anemic? If you're going to the bathroom often, it might be that you're losing blood as well.
I hope your next infusion gives you some relief---if you're getting them every 8 weeks, you could also ask your doctor if you should be getting it every 6 or 7 weeks. Or it might be a better idea to stop the Remicade treatments and try another biologic like Humira.
