HealingWell
Search Close Search
☰

struggling

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 12/14/2011 6:15 AM (GMT 0)
Currently sitting at my laptop at midnight...sweating like crazy even though I just took a shower. I can't sleep and haven't in days...and I have two back to back math finals at 8am tomorrow!

I started having a flare about 6 months ago. My doctor is leaning toward surgery but wanted to try some other drugs first. I went back on Remicade for the first time in five years and had a reaction to it. I've now tried and failed with all three of the main injectables (Humira, Remicade, Cimzia). I'm currently waiting to be approved for some new injectable (with harsher side effects...). I can't even remember the name...starts with a D. My doctor put me on prednisone in the meantime to control my disease during the end of the semester (I'm a junior in college and have had CD since 6th grade). I've only been on prednisone twice and I forgot how awful it is. Yes, I've been feeling better but I barely feel human due to lack of sleep. I don't know how I'm going to get through the rest of this week.

I really am sorry that this post is so vent-y. I just feel like I have nothing to look forward to with the possibility of surgery up ahead. I'm definitely having one of those "life isn't fair" moments and you guys are the only ones who will understand.

I guess I really wish that I knew someone my own age going through the same thing. I know they're out there...but its not like people go around advertising that they suffer from bowel disease.

Ok...officially done ranting. I suppose if I am going to be up until the wee hours of the night I might as well spend it studying...
Posted 12/14/2011 7:10 AM (GMT 0)
Yikes! Well, I'm not your age (probably old enough to be your mom though LOL) and even so, I still understand somewhat what you're going through....just different life stress, but still life stresses.

I'm assuming the pred is keeping you from getting sleep (or possibly at least part of the reason)? Are you taking it all first thing in the am? That tends to make a huge difference with sleep issues (related to pred that is)....you're not drinking too much caffeine to late into the evening are you? That could cause issues with sleep as well (besides the life stress I'm sure your having with finals and all). If none of the above aids you with getting some sleep, do you think your doc would prescribe you a low dose of sleeping aid?

I'm sorry you got sick with CD at such a young age (I always find it heartbreaking when I read/hear this)....I felt like it was bad enough getting it at 24 and being a new mom, but that doesn't compare to someone getting it much younger.

Sorry I can't offer you much advise and I hope the new med works out for you (I know all about being allergic/non-responsive to the RX used to treat this horrid disease.

Best of luck on your test later this morning and with everything else as well!
Posted 12/14/2011 7:34 AM (GMT 0)
Hey Jackel. First of all I am sorry you are having such an awful time, Prednisone effects me in almost the exact same way and it is so frustrating. I really hope you find a medication to work for you, I am currently on Remicade but my last dose was a few weeks ago and for the first time I did not feel better after, so I am nervous it has stopped working for me.

I am guessing that school must be really difficult between the flare and the Prednisone, I can't even imagine :( I "luckily" started showing symptoms about a month after I graduated from University, so I at least finished my education without the Crohn's effecting that too bad, but unfortunately I have not been able to work since!

We all have our life isn't fair moments, and this site is a good place to vent :) Hope your test went well, and that you find relief soon! I also understand trying to relate to people your age, I am 22 and I for sure know how hard that is. My identical twin sister also has Crohn's, and while I am devastated that she has it too, it is nice to have someone to talk to and spend those rough days with. I Hope you can find someone close to you that you are able to talk to. Best of luck, feel better :)
Posted 12/14/2011 8:36 AM (GMT 0)
Yes, I forgot to point out that it's the prednisone that causes me to not be able to sleep (and my body temperature goes nutty). Tonight, I have studied the heck out of my two exams tomorrow, cleaned my room, showered, and read a chapter in a book. Every time I try to fall asleep I get a sudden burst of energy. As soon as I start doing something...all I want to do is hit the pillow. It's the worst (but I guess it's better than being up on the toilet :/ ) Either way, I'm going to be in major zombie mode tomorrow.

I take half my dose in the morning and half at night. I'm currently on 40mg and will begin weening after I start the new drug. I never thought about switching it all to the morning (didn't know that I was allowed?). I almost never drink caffeine anymore besides the occasional cup of tea in the morning. Coffee affects me horribly.

Thank you both for your words and support :) I know we all go through this.
CD-89 you have no idea how much it helps just to hear of someone else in their 20s with CD. I have never met anyone else below the age of 40. I'm sorry to hear about you and your twin. Maybe one day I will have my own unfortunate CD buddy to share stories with...
Posted 12/14/2011 8:49 AM (GMT 0)
Hey Jackel, yep that is prednisone exactly for me too. Has your doctor prescribed you anything to help the side effects?? I was taking sleeping pills and the occasional ativan. I could not sleep at all, and my heart rate was super high. I totally can relate with the energy bursts as well as being tired, it suuuuucccks! I was obsessed with night time cleaning while on prednisone, it was super weird. I actually got up at 2:00 AM once and cleaned all the baseboards in my condo by hand. Like I said, weird.

I took all of my pred in the morning as well, as early as possible. It is supposed to help decrease the side effects but it is hard to know for sure if it is more effective that way. Coffee sucks for me too, it usually means a day on the toilet.

I haven't met anyone around my age either except for my sister so I know how hard that is. I personally don't talk that much about my Crohn's, it is hard to be a young female and talk about this disease, which is why I think that it is hard to find others with Crohn's. I hope you also find a Crohn's buddy, even though it sucks, we may as well all come together! Hope that you can go home and sleep after your tests tomorrow, and post here anytime you need some young Crohnie support! :)
Posted 12/14/2011 1:37 PM (GMT 0)
Oh jackal, I feel bad for you, I'm old man 61, but I had cd at your age, I can't do bio-logics either, so what I've done is start with imuran, 3x 50mg, that made me have terribke side's, so I cut back to 1x 50mg plus 10mg of pred. and then pain meds plus sleeping pills called restoril, restoril's are old chewap drug, without ins. it's 12 bucks a month. I also take anxiety drugs, I take clonasapam for anxiety, but you can use them for sleep, I cut them in half, so it's just stops the anxiety. I wish I had better info. but there are too many young people getting this disease, it's not fare. You don't evan get a chance to do so much, but try to get it under control, mild cd, you can lead a very normal life. good luck to you

AG
Posted 12/14/2011 2:12 PM (GMT 0)
Jackel you really should be taking your Pred all in one dose as early in the day as possible.  This will help to  avoid the insomnia issues some.  You can also try something like Benedryl at night to help also.

Pred is one of those meds that we love to hate.  They get us feeling better quickly, but the side effects aren't always that pleasant.  Hugs!

Posted 12/14/2011 7:09 PM (GMT 0)
Hi Jackel

Wish I could do someting else then just to tell you that I know how you feel. I have yet some therapy options left but then it´s the same for me and preds is a med from hell if you ask me, nessesary but awfull.

Take it moment by moment and put one footh infront of the other.
Dont give up let´s hope the new med is just the one you´re waiting for!

Wishing you the best of luck!
Keep us informed.
Posted 12/14/2011 8:03 PM (GMT 0)
Hey Jackel! I hate you are going through a tough time. I know living with the disease is rough and then failing treatment isn't exactly great either cry

   I'm in your shoes at the moment too. I'm flaring, on Prednisone, and this whole week has been semester exam week. I've been in the hospital for a few months and barely get the concepts but my teachers have worked with me. I have makeup work from October still. It took a lot of confrences with the administration but I worked out a plan for when everyone else is taking their exams I go to the main office and study/do makeup tests from when I was in the hospital. I'm now 'excused' from the exams everyone else is taking. Like today I made up three Science tests and they are counting that as my 'semester exam' for that particular subject since there's no way in heck I'd be able to understand the actual exam. Maybe you can talk to your school about it? The headmaster at my school actually begged me not to take the exams because I'm one of those "I'll stay up till  4 A.M on the toilet studying if I have to get a good grade on my exams & get caught up on makeup work." My mom actually called the school, agreed with the headmaster & made the decision that I would not take exams and just do makeup work I missed during my various hospital stays this semester and have that count as my exams. I'm still stressed out and probably overworking my body and making my flare worse but I do feel better getting a system worked out!

   I take a small dose of pred at night (10 mg) and a bigger dose in the morning(30mg) so I know how the sleepless nights are combined with the school stress. Other members are right. When I took my full dose in the morning during my last taper I slept loads better. I'm tapering now and tonight will be the last night I take my nightly dose of Prednisone so I'm excited! Only a few more months & we will be off this drug yeah

((HUGS))

✚ New Topic ✚ Reply