My story

I was recently diagnosed with Crohn's after suffering for several months. Probably waited too long to see the doctor but after an episode in Disney World I decided to see him the day after I got back. I had gone to Disney to run a ten mile race thru the park at night called the Tower of Terror Ten Miler. You actually run at night thru the park. I wasn't feeling great a few days before and had been experiencing a lot of GI issues leading up to the vacation. Got there and was stopping at all of the rest rooms. The night of the race I was starting to feel really awful but was trying to suck it up and run because my daughter was with me. Three miles into the race and I stared to vomit. Ended up in the medical tent with a 103 fever. Doc gave me a shot for nausea and sent me home. Spent the next day traveling home and of course all flights were delayed making it a 16 hour nightmare.

Got home and called my GI doc and made a first available appointment. When I told him my symptoms he looked at me like I had two heads. Bleeding, diarrhea, etc..,. Scheduled the colonoscopy and was diagnosed with Crohn's. Thank god for the prednisone. Felt better immediately but as I reduced my dosage the symptoms came back immediately. Scheduled my Remicade immediately and waited patiently for the insurance company to approve it.

Had my first infusion last week and felt a little sluggish but not sure if it was the remicade or not. A week late I'm still feeling a little tired but again, not sure if it's the remicade or thanksgiving. I find myself reading the side effects web sites which are not very comforting but my symptoms are significantly reduced. I did feel real good wile I was still taking 20 mg of prednisone but I'm now down to one pill, 10 mg, and I feel like the symptoms are returning slightly. Still much better than the hell week at Disney but I find myself very tired after trying to run on the treadmill.

My next infusion is scheduled for Dec. 3rd.

Hello and welcome to the forum

I have heard mention before of folks feeling tired after having an infusion, we do have a sub forum for the Remi that is worth having a look at to have a chat with the folks here about this: http://www.crohnsforum.com/forumdisplay.php?f=58. The return of symptoms could be at you are lowering the pred dose whilst the Remi has not yet fully kicked in so it may be worth seeing if you can have a chat with your doc and perhaps upping the dose a bit and then trying to lower it again after a further infusion or two. Also it is worth having your vitamin levels checked as well, people with crohn's tend to get deficiences in this area and a low B12 for example causes fatigue.

I hope you can be feeling fit and well again soon, please keep us updated on how you are getting on.

AB
xx

Hiya Steve
and welcome

Take it easy, no more treadmill, yet! Let your body recover from the steroids first.
I concur with AB, tapering Pred can make you tired, your adrenal glands have been shut down, they need to wake up!
Good luck with the Remi.
Joan xxx

Yeah, like others said, take it easy for a little bit till everything kicks in and your back up and running (ha). Anyways, just wanted to say welcome to the forums, its a great place for answers and support.

I plan on running a marathon in my future as well, a big goal for me.

Really good advice everyone. I know I should be taking it a little slower but running became a good way for me to deal with my stress and while I really hate to run it became a habit. I'm surprised that so many people are not on the remi for a long time. I expected this to be the solution for me. Nice dose of reality. Nice to hear from a fellow Penn Stater. Class of 1980, haha.

Hiya Steve n welcome. I hope your fatigue will diminish over time, but like mentioned above, we need to give our bodies a chance to catch up to what is going on. Sometimes we get subconsciously ( mentally) exhausted and our bodies are confused. Rest and building back up slow allows us to adjust at a reasonable pace. Not that we want that, especially if your active, but sometimes it Gods way of telling us to slow down, take a breather and look around. There might be something you're missing. Good luck with your Remicade®, i do hope it works well for you. Keep your head up n stay strong! - hugs-

Hey Steve and welcome to the community

You've received some excellent advice thus far. As mentioned, the meds could certainly be causing you issues. Other common causes of fatigue in people with Crohn's are vitamin B12 deficiency like AngryBird mentioned, magnesium deficiency, vitamin D deficiency, and iron deficiency. In addition, dehydration can cause a world of problems as well. Quite commonly, it's a combination of these things. Something to discuss with your doctor for sure.

Again, welcome

So, a couple of months into my teatment and I'm back at the doctors office yesterday with returning symptoms. I got thru my first loading of remicade and ws scheduled for my next treatment at week 8. Got to week 5 and the original symptoms returned. Doctor had me moved to a 6 week intervalk but could not get me in until 7 weeks. I was back to square one. So as of yesterday I was back on prednisone, lialda and a new drug for me, azathioprine. I feel alittle better now that back on the steroids but I realize this is short term. Doc ordered a small bowel follow through exam for later in the week and then a followup with a ton of blood tests for all of the potential side effects. I've heard the bowel exam has you drink some nasty barium solution and then wait around for 4 hours while it works its way through your lower GI. Has anyone had that?

It sounds similar to what I have had to do a couple of times. The mixture to me tasted like aniseed with a white chalky like consistency, the scan you then have shows is going through your bowels ans can pinpoint any spots where/if the bowel is narrowed. It does make your bm's white for a couple of days afterwards and difficult to flush away which can get interesting if you have to 'go' whilst at work lol. With regards to the Aza I have been on this twice now and both times it has done a good job at settling the tum so fingers crossed it can do the trick for you, please keep us updated on how you get on.