Take 2-3 naps per day

[social me]

I was diagnosed 2 weeks ago with CD it is mod/severe all throught colon and intestines. I also have GERD damage to esophgus. I have had all tests and blood work don I have CD for sure and my b 12 levels are normal and so is thyroid and vit d but I take 3, 2-3 hour naps a day I feel depleted like I can hardly move. I dont work and kids are in school and preschool fulltime because I cant care for the 3 year old. It started with diahrea but since aasocal it is now contsipation. I have cramping, burning feeling and upset tummy w some vomiting. I take everyting I am to take plus some very good supplements. My sleep well that is all over the place. The fatigue, not wanting or feeling like I can do anything but lay in bed. I have been sick for 1.5 years like this they thought it was depression or lupus until they finally figured out it was CD. any stories or helpful hints would be great because I am new and littled scraed. I have been educating myself and advocating for myself. my treatment is remicade which I have been on for 2 years for others immune system problems so they are keeping me on that so no steriods or b12 shots for me. Thanks

 

[Rebecca85]

Well the remicade obviously isn't working for the Crohn's, else you wouldn't have developed any symptoms while you were taking it. Maybe you need to switch meds? Once the crohn's is under control you might feel better. Have you tried anti-depressants? I started taking them recently because I was so fatigued, and it seems to be helping to regulate my sleep and tiredness.

 

[CDDad]

Hi Social me,
Well, I'm not doctor, but you've been on remicade for 2 years and are doing lousy quite frankly. I think you need a new med plan.
I know the CD diag is new, but was the Remicade a different dose for the original reason you were taking it? In other words, will you be on a stronger dose now? I just don't see why it would start helping now.

Have you been on Prednisone before? When I was as sick are you are describing, that is what I normally needed to get back to some kind of life and then taper off and start another maintenance drug.

Good luck to you!

 

[Lee]

You learn a lot here on this forum. Asacol does constipate you. I've found taking benefiber in the mornings and a vegetable laxative helps sometimes too.

 

[Jennifer]

Your body is working hard to try and repair itself and the meds you're taking for Crohn's don't seem to be doing the job as Rebecca said. I'd contact your GI and let them know all your symptoms including the vomiting and fatigue. Feeling tired all the time is common when your body is working so hard on the inside but it is possible you're also dealing with depression on top of that since you were newly diagnosed, can't care for your children the way you want to and can't control the way you feel. Talk with your GP about seeing a phycologist (therapist) and psychiatrist (someone who prescribes meds) to see if that will help some but its very important to get the Crohn's under control while you do that because it could be the main cause of your fatigue. Finding the right antidepressant and at the right dose for you can be a very long process and many general practitioners will just prescribe 20mg of Paxil off the bat but that particular med and dose doesn't work for everyone and its better to see a specialist. I took 20mg of Paxil and I was pretty much bedridden with fatigue.

 

[bushydougie]

Fatigue is My worst symptom. I became ill last January and was off work for 8 months mainly because I just couldn't do anything. I'm still not fully diagnosed but my GI strongly believes it's CD. All my blood works have been normal except my crp levels are sometimes raised.
In July last year I was put on 20mg of pred and the difference within 3 days was amazing. I had so much more energy than I did have. Previous to that I could hardly walk anywhere. I was like an old woman taking tiny fairy steps. I spent most of my days in bed or on the couch. At times I was too tired to even have the energy to watch tv. It was awful. I also suffer from insomnia which is just crazy as I'm so tired.
I'm now on Entocort. I still struggle with my Fatigue but it is much much better than it was. I'm back at work doing 4 days rather than 5 which is a real help
I hope that you get some relief from it all. Please go back to your doctor and discuss your symptoms with him. I came off Entocort a few weeks ago but because my fatigue returned I was put straight back on them again

Sam

 

[social me]

thanks

thanks I take colon max it is all natural with alot of holistic herbs that they treat for CD. I also take their probiotics. They are very good better then lax or stool softeners and work within 8 hours. Also wrapped in vegetables so they are eaily digested. Made by advanced naturals I take flora max and colon max. I hope this help. Nurtisionst said it help to get you intestines working together with herbs, better that way. Good luck.

 

[sara.eich]

Hello Social Me,

I was diagnosed with CD in Decemeber of 2010. I had the same exact symptoms. I was diagnosed in 22 1/2 weeks (very short compared to some and I am so thankful for that). They threw pain medicine after pain medicine at me before finally figuring out it was Crohn's. My GI specialist put me on Prednisone for 20 days while starting me on Pentasa. The first 20 days I was taking both of those to get rid of the flare up. After the 20 days on Prednisone I was just on the Pentasa and I have been doing fine ever since. I take 8 pills of Pentasa a day on top of vitamins but I have not had trouble with those symptoms since. Good luck and I hope your doctor gets you the right treatment soon!