4 weeks of work missed now and med switching :(

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thenay
Regular Member


Date Joined May 2006
Total Posts : 167
   Posted 10/17/2007 8:51 PM (GMT -7)   
I've been reading over the forums a lot, and I noticed we have a lot of great members here.
I just want to thank you all for being supportive of each other, and were all in this together.
I need a bit of help or advice and your input if some of you got time. I do apologize for the long post, i'm going into what has been happening since I was DX.
 
I've been DX with Crohn's May 2006, and as much as I hate talking about my issues that I get they are,
- diarrhea once every 3 weeks (oddly, it's like its timed and builds up over time and when I go once its done for the day 99% of the time until 3 weeks later)
- a lot of gas (i wrote out what food i ate for a week, and it seems everything is doing it, tried eating hardly still gas)
- stomach cramps on my lower right side
 
I was put on pentasa 500mg 3x a day in May 2006, it helped the gas a bit, pain was gone and the D still was happening but every 3-6 weeks, and sometimes I have like 2 mins to get to the washroom or too late.
 
Jan 2007, my GI doc added Entocort 9mg 1x a day, my issues were gone, gas was very rare, pain gone and D was gone.
I could eat anything pretty much and be fine.
 
June 2007 (on vacation in vegas) BAM, the D is back, pain and gas. Every 3 weeks I got D, gas here and there, and pain on and off.
It started to get worse around Sept 2007, more pain, I had to take some days off work every other week, upped Pentasa to 1000mg x 3... It rarely helped.
 
Now since Sept 24/07 I was taken off the Pentasa and Entocort, been off work since due to my issues running to the bathroom 4 times for 2 weeks, and the pain has been so bad. 
 
I was put on Prednisone 40mg x 1 a day on the 24th. The worst drug ever! My knees/arm/hands were killing, I couldn't walk, can't sleep, and my heartbeat was going fast. So I went to the ER as I was in so much pain, was told to be upped to 50mg.  After a few days the pain was somewhat gone, but my heart was and still is beating at 105bpm at resting state. The D has stopped, but I feel like I have to go to the bathroom every 4hrs (it's like pebbles now, I know gross! Poo talk) and gas is really bad. I'm not eating much. I'm getting really angry and irritable easily. Still can't sleep without sleepin pills (was given sleeping pills to help but told not to talk them for more than 4 days at a time, it helps). Heart is still going fast. Went to doc, was told to go down to 20mg of pred for 3 days, then 10mg 3 days, then 5mg 3 days and stop, when i'm stopped i'm seeing my GI doc (he's on vacation till next Thurs!).
 
I'm still on 40mg, and scared to go down and get worse. I don't know what to do. I'm freaking out.  I'm on short term disability, and they're ok that i'm home from work. I'm going nuts cos i'm bored and not feeling well and the last few weeks I feel like a failure when I talk to the insurance company who's handling this seeing there's no real progress and i'm scared i'm going to get fired when I go back to work. Btw, my GI doc plan was to put me on pred for 40mg for 3 weeks, then put me on Imuran and taper me off Pred next Thurs. I still got the entocort and pentasa in my drawer. Sigh.  Once again, sorry for the long post. I'm going crazy over here! Oh and I got percocet for my joint pain as it came back when I went back to 40mg (and I know not to take it long as its habit forming, T3's do nothing for me :( ) 
22 with CD and using Pentasa 500mg 3x daily, so far so good


Momikins
Regular Member


Date Joined Oct 2007
Total Posts : 77
   Posted 10/17/2007 9:06 PM (GMT -7)   
My nephew has had Crohn's disease for quite a while now and his doctor keeps him on the Asacol and adds the prednisone. I'm on Pentasa 1000mg four times a day. Maybe it is time to switch to a different GI doctor or to try to treat things with diet and probiotics. I just don't think it is right for you to have to be in so much pain and to be sitting around the house losing your mind to boredom. You are much to young to be having to deal with disability. Get a second opinion.

thenay
Regular Member


Date Joined May 2006
Total Posts : 167
   Posted 10/17/2007 9:25 PM (GMT -7)   
I'm getting a new GI doc, I don't really like the one I have.
I wait an hr in his office, then I see him for 15 mins if that and i'm out the door.
I ask him questions and he barely answers anything, just throws pills at me and i'm gone after I tell him a few issues.

Bad thing is, I gotta wait til March 2nd 2008 to see my new GI. Gotta love free healthcare for that, darn delays.. lol

I try probiotics to help aid with food and it doesn't help. Mayb i'm tryin the wrong one?

I'm hoping to get better soon, I want to go back work (and will once i'm fine, job is still sitting there they said til I get better) but I know if I go in i'll leave as i'm in so much pain, feeling irritated easily. and running to the washroon in anxiety. Sigh. I'm taking the dog for short walks to get out of the house, and 20 min trips to the local store, sometimes in fear tho and just leave when I get there, if I don't do it tho i'll prolly become too comfy sitting in my room and become majorly depressed (I live with 'rents still)


DX with CD at 22 (23 now)
Tried Pentasa and Entocort, worked for a yr and a bit
Now on prednisone 40mg and going crazy!

Post Edited (thenay) : 10/17/2007 10:25:23 PM (GMT-6)


JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 10/18/2007 5:01 AM (GMT -7)   
I know you hate the Prednisone, but it may be necessary until you get on the Imuran and it kicks in. Entocort is great for people who can maintain on low doses of Prednisone, but it doesn't work for people who need the high doses to control their flare.

I would go with your doctor's plan, and if your symptoms get worse call him and tell him you can't reduce the Prednisone. I'm not sure why he hasn't started the Imuran, the sooner the better as it takes time to kick in.

I know it's hard, and I hope this medical protocol will help you in the long term. As for your job, I know you're worried, but you need to focus on getting well or you won't be able to hold on to it once you go back anyways.

I'm so sorry to hear you going through this, it's not easy. Will your National Insurance pay for a therapist? It may help you to see one who specializes in chronic diseases who can help you to cope and give you someone to dump on.

Remember, you can always vent here, no one judges, we've been there.
Judy
49 years old, CD since I was a child.    
Six resection surgeries, permanent ostomy, adverse reactions to Remicade finally off of Prednisone, back on 6MP for maintenance, hoping for a long remission from this last surgery. 
 
 


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 10/18/2007 5:03 AM (GMT -7)   
Hi I know it can be frustrating at times trying to get meds straitened out. I am having some med issues myself lately as well as health. Bet your dog is loving the extra care .Mine loves going for drives lucky little fellow got out twice yesterday. Hope you feel better soon. lol gail

thenay
Regular Member


Date Joined May 2006
Total Posts : 167
   Posted 10/18/2007 9:17 AM (GMT -7)   
Yea i'm seeing a specialist for my CD, it's 100% covered. I was just on the phone with him and he was raising his voice at me, and didn't care about the side effects I was having. I've been going to the washroom 4-5 times a day (use to go 1-2 times a day) since I got off the pentasa and entocort after being put on pred 40mg. They're normal now (formed crap, but like pebbles), but it feels like I gotta go every few hours and it ends up being gas or a little pebble of crap. It's annoying and driving me crazy. I can't wait to see my new GI doc, I understand he's fraustrated and he mentioned he might want to put me in hospital, i'm seeing him tomorrow am and seeing where that goes. Any idea what they'll do if I go in hospital? I'm worried now. Thanks for your replies.

I forgot to mention my fam doc told me to get off the pred as my GI doc was on vacation and couldn't see him.
I think he's upset about that and the fact he knows i'm not a patient of his in March. I had other reasons to switch, he's 30mins from me and it's not easy getting there.

I don't know why he would put me in hospital if i'm crappin normal, it's not like its stuck up there, lol
I have mild/moderate pain tho, so I dunno, go figure?


DX with CD May 2006 @ age 22
Tried Pentasa and Entocort, worked for a yr and a bit
Now on prednisone 40mg and going crazy!

Post Edited (thenay) : 10/18/2007 11:13:19 AM (GMT-6)


thenay
Regular Member


Date Joined May 2006
Total Posts : 167
   Posted 10/20/2007 2:34 PM (GMT -7)   
Well I wasn't put in hospital, he's taping me down on the pred to 35mg/week, then 30mg/week and i'm seeing him then.
If all goes well with the side effects, then i'm going on Imuran I was told. They took an ECG or sumthin for my heart as it was racing.
That turned out ok. Gave me Ativan to handle the shaking. It's helping. Heart still going fast. Sigh. *waits* lol
DX with CD May 2006 @ age 22
Tried Pentasa and Entocort, worked for a yr and a bit
Now on prednisone 35mg and having some side effects, "..time goes by so slowly..."
If you need to talk to someone, PM me and i'll give ya my msn ;)


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 10/20/2007 3:26 PM (GMT -7)   
The good news is the pred must be working, if it's causing the pebbles (constipation). 
 
Judy's right - Imuran takes months to kick in, so you are going to need some kind of maintenance med.
 
If you taper successfully off the pred, then you might want to take at least 6 mg of Entocort as a maintenance med until the Imuran kicks in.  

JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 10/20/2007 3:27 PM (GMT -7)   
I still don't know why they aren't starting you on the Imuran now, it takes months for it to take effect and you want to be on another drug if you can for those months. It's all about controlling the inflammation.
Judy
49 years old, Crohn's Disease   
Six resection surgeries, permanent ostomy, adverse reactions to Remicadeback on 6MP for maintenance, hoping for a long remission from this last surgery. 
 
 


thenay
Regular Member


Date Joined May 2006
Total Posts : 167
   Posted 10/20/2007 3:31 PM (GMT -7)   
I think it's b/c i'm having really bad side effects from pred and wants to find the optimal dose.
So it doesn't confuse it with Imuran if I get something from that. Who knows, it's annoying tho.
I'm feeling a bit better tho :)

So pebbles is constipation eh? I wish my doc told me that, sigh. It makes sense thinking about it.

Thanks again everyone! :)
DX with CD May 2006 @ age 22
Tried Pentasa and Entocort, worked for a yr and a bit
Now on prednisone 35mg and having some side effects, "..time goes by so slowly..."
If you need to talk to someone, PM me and i'll give ya my msn ;)

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