Been gone awhile - flaring again

[InkyStinky]

Hey everyone - apparently I haven't logged in here for almost a year! (Btw, I really like the "new look" of the forum). Here are a couple old threads with my story:

http://crohnsforum.com/showthread.php?t=9393
http://crohnsforum.com/showthread.php?t=9528

So, after having to go down to 50mg of 6mp daily because of elevated liver levels, I'm flaring again - blood, mucus, alternating C/loose stools, low-grade fever, etc. So I'm starting pred again (today, if my doc's office gets around to calling it in to my pharmacy) and I'm pretty depressed about it. My hair hasn't grown out yet from the last round of pred (more than a year ago) and I'm really bummed to think about it falling out again.

Anyway, I'm kinda having a hard time facing all the side-effect that'll come with a course of pred. Not to mention that it's going to screw up my blood-thinner dosage that's never stable anyway.

Thanks for "listening" to me vent...

 

[xJillx]

Hi Sabrina and welcome back! I am sorry you are returning on such a bad note. But hopefully pred will take care of your flare with not as many side effects this time around.

I read your My Story, and I wanted to ask you about your blot clots, because I have been having pain in my right leg for several weeks. The thead I started about the topic is here. I did go to my doctor, and he was positive it wasn't a blood clot. His reasoning was if it was a blood clot my ankle would swell, there would be markings, and he'd feel it. He thinks I have a Baker's cyst, which is basically fluid behind the knee. But I am not 100% convinced. I have pain through the whole leg (calf, knee, thigh). Some days it doesn't really bother me, but other days it can be really bad. What was your leg pain like?

 

[InkyStinky]

Hi Jill! I'll read your thread right after I post this, but I just wanted to tell you right away that my clots were missdiagnosed by two docs (was told it was an electrolyte imbalance and to drink gatorade) before I found a doc who knew what was going on.

Not to be an alarmist, but the facts are that:

I had NO: swelling, discoloration, "classic" signs. Visibly my legs looked normal.
I had: horrible cramping in my calves that made it almost impossible for me to walk, The pain would come and go. And then after a few weeks(!!!) of that one of my veins near the surface of my skin got red and hard - but that was the ONLY visible difference in my legs. I also started running really high fevers and had night sweats, but those things started a few weeks after the initial calf cramping.

So the doc (who most likely saved my life) ordered dopplar ultrasounds of both legs, which showed the clots (and one was a dvt). Then a ct scan showed the pe's (bilateral).

It's my understanding that the only way to know for sure if you have a clot is the dopplar ultrasound. I'd ask your doc to order one. If it comes back negative, great! But if not you can get treatment right away.

Ok, I'll go read your story and see if I can add anything useful.

 

[xJillx]

Yes, I read that an ultrasound is really the best way to check for a clot. Also, I have read some people have no signs at all. For these reasons, I somewhat doubt my doctor's diagnosis. Next time it gets really bad, I will be more pushy about an ultrasound.

Did you GI call in your pred yet?

 

[InkyStinky]

Yeah, the rx actually made it to my pharmacy. I'd say "yay" except it's pred so I say "blech"! (My GI is in the closest "big city" - 2hrs from me - and the communication with my local healthcare is less than stellar, unfortunately.)

And since you're still having pain I think you'd be totally justified in asking for an ultrasound now, even just to give you peace of mind. And if you start running a fever I'd get one done right away. But I'm really hoping that it's not a clot!

 

[Crohn's 35]

Sabrina!!!!!!!! Oh my goodness!! I was worried about you. How ironic I just came back too. So sorry you are flaring and I know all about pred, I am usually on it 2 times a year, but hair loss in the front of my head...getting harder to hide it. As you know being on Pred, make sure you take a good amount of calcium and vitamin D3 to help absorb it. Yes it has been a year, just before Halloween. As long as you are ok, I am happy you are back too. Alot of funny people have left, but it could be that they are well and that is what it is all about. Glad your back!

 

[InkyStinky]

Hey Pen! I just pm'd you

Sorry to make you worry... the brain fog really just got to me - I'm a zombie most of the time, argh! (And I got myself a big ole pill sorter a while back so I can remember to take all my suppliments, so I'm good on the calcium/d!)

Boo, pred! It's not enough to mess with our heads/faces, it has to take our hair, too!!!

Glad we're back together

 

[David]

Hi Sabrina and welcome back! Thanks for the kudos on the look of the forum

I'm sorry you're flaring again, you poor thing *sigh*

Anyway, best of luck getting this flare under control ASAP. We're here for ya