New here need some advice

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MAG102886
Veteran Member


Date Joined Jul 2008
Total Posts : 674
   Posted 7/22/2008 2:17 AM (GMT -7)   
Hey all, Im new here...kinda needing some answers or advice.  Heres my story....
 
I first found out I had crohns when I was 16 years old, after being sick for over 4 months...not being able to eat, throwing up constantly, horrible stomach pains my doctor decided that it wasnt me being "nervous" about starting highschool, I was sent to the hospital and had a colonoscopy and a week later had 16 inches of intestines removed. I was in the hospital for around 2 months recovering, put on steriods and all that stuff....
 
For 5 years afterwards I had no problems, no flare ups...and was on no medication
 
Just recently I had a huge flare up I ended up in the hospital for 3 weeks, lost 45 pounds...My doctor decided to put me on humira. I had my first 4 shots in a row in the hospital, and the next morning I woke up feeling like a completely different person, 100% perfect like Ive never felt in my life. I was sent home, and put on the humira every other week, and 100mg of pred.  My doctor started dropping me down from the pred 20mg a week (which seemed way too fast for me, turns out it was) When I got down to 20mg I started to get serious stomach cramps, and back pains that I couldnt stand, so he bumped me back up to 100mg of pred a day and instead of the humira every other week, he has me on it every week and gave me some pain meds. My GI has openly admitted me to me that Im the worst case that he and his partner has seen, and all he can do it try different things to help me, but basically I feel like Im being jerked around by him bumping me back up to 100mg of pred and humira every week because I started to flare at 20mg...the pred makes me feel so crappy, I eat everything in sight, I cant sleep at night from it, its effecting my job..and Im worried about the long term side effects of the humira with me only being 21. At this point he is saying if the humira doesnt kick in hes going to resort to surgery, which is fine if it comes down to it, but for some reason I just dont feel like hes doing the right things, hes talking about me going on disability, and he doesnt want me working...and it just seems crazy to me, I'm just really confused and stressed out and just feel like Im going to have a break down if this doesnt let up a little bit at least, anyone have any advice, or think my doctor is a nut case...or am I just over reacting from the stress? I'm just scared because I feel like my life is being turned upside down right when Its supposed to be the best time of my life.
 
Anyways, thanks for reading, comments and advice would be nice even if you think I'm crazy, maybe it will knock me back to reality
 
Melissa

LBJ
Veteran Member


Date Joined May 2005
Total Posts : 511
   Posted 7/22/2008 3:30 AM (GMT -7)   
Hi Melissa and welcome to Healingwell. WOW 100mg of prednisone is extremly high!! I'm sorry your having to go through all this.
Have you thought about going for a second opinion??? I highly suggest you do that!!! Before I let this guy do anymore surgery
I would definitely go for a second, even a third opinion. Maybe the Humira isn't working well for you. Have you tried Remicade
or the other one that is out now that begins with a C. (Sorry I'm still half asleep this morning-lol)
Hang in there!!!
Living with Crohn's Disease since Jan./2000 but had a few years prior
I'm a true Crohnie with IBS too
 
Meds I have tried:  Too many to list- LOL
Meds currently on:  Prednisone 20mg tapering  Back up to 30mg  :-(
                           Methotrexate injections once a week 25mg
                           Folic Acid 5mg once a week
                           Wellbutrin
No Surgeries
 


Stef17
Veteran Member


Date Joined Feb 2003
Total Posts : 1811
   Posted 7/22/2008 6:21 AM (GMT -7)   
Melissa, I'm so sorry for what you are going through. How tough to deal with all of this at such a young age! Here's my 2 cents - if you are not sure about what your doc is telling you then seek a 2nd opinion. It never hurts. Having a 2nd person look at your situation can offer a fresh perspective, even if that doc ends up agreeing with your doc.

As for the disability thing... don't freak out. It's not as crazy as it sounds. What your doctor is telling you is that your health situation is fragile enough that working is not good for you. Maybe you should conisder it. I know it's a hard pill to swallow, but maybe if you didn't have the stress of managing your disease AND working you might get some relief. Just a thought. Only you will know what's best for your situation.

100mg of pred is enough to make anyone feel like garbage! UGH! Pred is not the only medicine out there. You can tell him that you refuse to take it (after you wean down of course). Ask him if he would consider something different. Can he use Imuran or 6mp? Are there other drugs. Tell him that while you may be a severe case, certainly he can't manage you on steroids forever so you'd like to know what the long-term plan is. Ask some hard questions and find out what his answers are and if you aren't satisfied, it never hurts to seek a 2nd opinion.

Hang in there kiddo. There ARE better days ahead.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 7/22/2008 6:31 AM (GMT -7)   
I have to agree with the other replies you have received.  I think 100 mg of Pred is WAY too high.  The most I have ever started at was 40 mg.  I think you really need to get a second opinion.  The weekly Humira is not a concern to me but the 100 mg Pred is, its too high in my opinion.  Good luck and keep us posted on how you are doing.

Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 7/22/2008 4:05 PM (GMT -7)   
100mg is do-able. Some cancer patients do 100mg for a few days a month / fortnight as part of their chemo cycle. I think the dosage depends on why you're taking it, and for how long.

Melissa, it sounds as if you're having a horrible time there. I can sense from your writing that you're feeling confused and topsy-turvy, and please remember that it's probably the pred making you feel that way. Few (if any) people could think cogently on 100mg pred.

At your next appointment, it might be worth asking why you're not being prescribed a medication like Imuran, Methotrexate or 6mp and yes, a second opinion might help too. If you're the worst case your doctor has seen, then perhaps you could benefit from having the occasional consultation with a more senior and experienced doctor.

Welcome!

Ivy.
Co-Moderator Crohn's Forum.


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 7/22/2008 6:48 PM (GMT -7)   
Hi Melissa Welcome to HW and hope your tapering goes more smoothly . From 20 down seems to be a slow taper for most of us. I know I had a hard time sleeping at 40 too. Was wandering about your weight loss if you are normally a small person I mean 45 pounds can be alot for some people. I know I had lost a lot of weight and the pred. put it back on for me and like you I was eating everything in sight and just not feeling very alert and a bit hyper. It did help get the BM's going again but I did end up with resection. Keep in touch and let us know how your doing. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


CrohnieYogi
Regular Member


Date Joined Oct 2006
Total Posts : 367
   Posted 7/22/2008 7:34 PM (GMT -7)   
Hi Melissa! Welcome to HW! At the risk of sounding like a broken record GET A SECOND OPINION. I know you are probably feeling overwhelmed right now (as you should) and the pred is probably making it worse. But I have to say, if you that your doctor doesn't know what he's doing, then you need to find someone that does.

It also sounds like you have pretty severe CD, but on the other hand, if this is a doc who doesn't have many CD patients, it isn't that hard to look like the worst CD patient he's ever had. Did that make sense? AND if you doubt him, there is no way you will trust him with your care and that makes it more likely that you will be less compliant with your meds. Get a second opinion--It doesn't hurt anything and you may find someone who can actually help you find some relief.

Good luck.

Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 7/22/2008 9:02 PM (GMT -7)   
Hello and welcome . I vote for a second opinion too..hope you feel better soon...
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.


smile1967
Regular Member


Date Joined Jan 2008
Total Posts : 174
   Posted 7/22/2008 10:24 PM (GMT -7)   
Just wanted to say hello...............let us know how things are going...hope you start to feel a bit better soon.

shelley
  • 41 yr old farmwife!! and mom of boys 11 and 9
  • resection surgery Feb. 2008
  • Pentasa, Entocort (when needed), citalopram,probiotic
 


MAG102886
Veteran Member


Date Joined Jul 2008
Total Posts : 674
   Posted 7/23/2008 1:58 PM (GMT -7)   
Thanks for all the input and support. I was supposed to be having a colonoscopy on monday to see if the humira has helped at all, now he tells me he wants to see me tomorrow just to talk to decide if he even wants to do it....once again with the run around.  I'm getting annoyed, and he will get an ear full tomorrow wether he likes it or not.  He also told me that I will not be getting any more pain meds (his partner prescribed me while he was on vacation) so he will be hearing about that too, I'm already living my life confused, depressed, and feeling like a nut case from all the pred, I'm not going to live it in pain ontop of it all.  Again thanks for listening, it feels so good to be able to talk to people who can understand exactly how I feel, no one around me understands anything I say or why I always feel the way I do and it gets so frustrating, I feel like they dont believe me.  This site is like my little rock to lean against when I just need a break from it all. =)
 
 
Melissa

Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 7/23/2008 5:15 PM (GMT -7)   
Sorry, I'm a bit late on this. But I always try to do it..
Welcome to HealingWell, the best support around. I'm sorry you must be here.
Man, 100mg of Pred? I don't want to know what your side-effects are!

Sincerely,
Matthew

MAG102886
Veteran Member


Date Joined Jul 2008
Total Posts : 674
   Posted 7/23/2008 6:43 PM (GMT -7)   

Matthew,

My side effects are unbelieveable.  I will litterally eat everything in sight. I stuff myself until I feel like I'm going to explode...and the worst part of it is that I dont realize Im doing it until its done...then about 20 mins later I'm hungry again.  Ive gained around 45lbs in the past 3 weeks (I was 155, now at 200lbs, and I'm only 5'3). I can look straight forward and see my cheeks because my face is so swollen.  I have the worst acne not on my face tho thank god, but on my underarms that is extremely painful.  I can pull out chunks of hair from my head. When I look in the mirror to me I just look like I'm dead, my skin tone is horrible and my eyes are black. I have horrible joint pains, and back pains. I havent slept in 3 days, and when I do its like a half alseep half awake kind of thing, I never feel rested.  I'm depressed from it, moody, I just dont feel like myself being on it, just a misreble person because of it...blahhhh haha. Its so crazy that its the one drug that can actually keep me going, but it brings me down so bad.  I think tomorrow I'm going to go in and lay it all out on the table for him, and if its the choice between surgery or the pred, then I'm going to choose the surgery, but tell him I do want a second opinion first before we do anything.  I'm only 21, so I know that I'm probably not very patient but this is my life that this disease is messing with, and I want to be in as much control as I possibly can with it, without making mistakes.  I think at this point though, I am willing to try a surgery again, I do know that theres only so much you can take out..and what happens after too much is taken out, I was just trying so hard to avoid that situtation and chance at this point in my life.

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