Dr appt and new symptom

[mRae85]

Well today started out great , I have finally found the most wonderful Dr ever and have alot of faith in him now. Lets start from the begining... bad news, I did loose wieght, go figure. Great news, he is tapering me on the pred now, I am at 30mgs a day now and he told me to stay alert for any bad side effects and well we all knew what the chances are there soo..... Greater news is that is he is going to contact the woman in Hershey PA and talk about the chances of LDN with her, he agreed, why should we waite untill it is to late to start somethin that seems to be so effective and safe. So over all the appt went super well, I have been in a bubble of pure happiness since then just knowing he was so open minded and honestly I think he was just as courious and excited about LDN as I have been. Now to the bad news and well main reason for my happy bubble leaveing like litterally just got poped with a needle from hell. Tapering the pred is supposed to be good but I just noticed a very scary new symptom and I had to ball my eyes out somewhere so I chose to do so here on everyones shoulder... I have been having alot of issues with C like really really bad this past week and have noticed it getting darker, this time it was very dark... black dark and well also there was alot of mucus :depressed: !! A sure sign of blood and mucus is not good and tapering off pred ... I can't help but see this as the begining of yet another nightmarre. I knew the pain was to the point of driving me over the edge and where there is pain there is never anything good so I knew something was going on, well I dont need a colonoscopy now to tell me just how bad that something is getting.:frown: The Dr is supposed to call me as soon as he talks to my GI and gets the appt made (I seriously only go see this GI when I have to for the pre appt and colonoscopy appt, he is a very arragont and well... I wont say what else he is, I am sure you all can fill in the blanks) So soon I suppose I will see more proof and more well.... how bad it is period. I will be on asacol again soon, filled out paper work on it today so I can get it direct from the p&gp company rather than paying for it out of pocket since I have no insurance. Once again, that makes my day long story as short as I can and can't see too well due to tears... blood and mucus has me dumbfounded, tampering the pred and being on pain pills just cant hold it all off... my nightmarre just got worse. Thanks for reading all this BS, just had to let it out.

PS: I really dont know what I'd do right now without you all, glad to know someone understands finally. Sorry if there are a million typos or something, not in the mood to re-read this post.

 

[mommy1st]

Hi, How close do you live to Hershey? I live close to Hershey, that is where all my doctors are. I love it there. I hope things start to look up for you soon. Good Luck.

 

[Kittee]

*hugs*

I hope you get this sorted out soon.

 

[mRae85]

Im bout 2 hours from Hershey, Im just across the state line. I live in WV, you prolly have no clue where my town is so I'll make it ez for ya and just say that I am about 20 mins east of Morgantown WV, driving to Hershey would be nothing if it works and I can get on it.... right now, I'd be willing to get on anything thought that has a chance of getting things to be better (anything cept pred!!!) I seriously think the pred is what made it so much worse, and now I am just totally dumbfounded in general.

 

[mommy1st]

I hope things work out for you and of course I'll say it again, everyone who I have ever seen at the Med center has been wonderful. I live about 15 minutes from Hershey and have been going there since I was first diagnosed at age 10. The med center is currently under construction so if you do go there don't be afraid to ask someone where to go because right now it can be a little confusing. Good Luck let us know how you make out.

 

[mRae85]

I'll keep everyone up to date, since finding this place it has seriously made me feel so much better emotionally just knowing everyone here fully understands it all!

Glad to know that I will be going to a good place, seriously knowing someone else who goes where I will be going is yet another small smile for me tonight

 

[AIjen]

I seem to be prednisone dependent as well. It kinda sucks. Just when I was down to 3 mg, I had to go back up to 10 and now back up to 20. THings started getting worse when i got down to 15-10, but I chose to ignore it just so I could get off the pred. Then I had to call the doctor's office and the nurse asked how everything was going. *sigh* Tapering down is very difficult on my body. Not sure if it's just because of the fibromyalgia or a combo of that an all my other issues, but the fibro gets ssssoooo bad when I taper down for. The all over pain and fatigue last for 5-7 days.

I'm really crossing my fingers that Humira works for me! I start it soon, but not sure exactly when yet. Whenever the med gets to me I guess.