Just having a bad day

[chrisnsteph1022]

I have a 50-minute drive to work and almost didn't make it to the bathroom this morning. Then when I did, there was a lot of blood. WTH? I haven't seen blood in months. I've been on Imuran for 5+ weeks and should be seeing some improvement, not going downhill. I'm in a lot of pain today and on the verge of tears and just want to go home. At least I have a heating pad at my desk and pain pills if it keeps up. I hate taking them, but will if it doesn't go away in a bit. Judging by the past few days, it won't go away. It's an all-day pain level of 3, with waves of 6-7 that take my breath away every hour or two for a couple minutes. I also had more sugar than normal for breakfast and now I feel queasy.:ybatty:

 

[xJillx]

Oh, Steph, I am sorry to hear this. I certainly hope the blood was a one time thing.

I am no doctor, but I think you need to give Imuran a little bit more time than 5 weeks. From all of my reading, it seems as though it usually takes 2-3 months to work.

I sure hope it will do the trick for you. Hang in there!

 

[Crohn's 35]

Hey Steph I know your pain but I don't bleed and if I did I certainly wouldnt be at work. Imuran is obviously not working, I know you hate to pop pills as I do too but being in pain wears you down and out. If it gets worse go see a doctor ok? :hang:

 

[chrisnsteph1022]

Thanks for the reply, Jill. I knew you'd be one of the first to respond.

I'm not giving up on the Imuran. In fact, I decided to give it 6 months before moving on. I'm just impatient and hurting. My GI basically told me I'm out of options, already being on a biologic and immunosuppressant. He said we could talk about MTX, but he doesn't really like prescribing that (and I'm not too keen on taking it). I'm not sick enough (in my mind) for surgery, thank goodness, so I may just have to deal with staying in a minor flare until/if the Imuran kicks in. He did offer me Entocort at my last appointment and I said not now. He said I could call anytime and he'd send in the script for me if I changed my mind. I may tough it out another 2 weeks until my next appointment with him then decide.

 

[chrisnsteph1022]

Thanks pen. I did end up taking half a percocet and I'm using my heating pad. The pain is down to a 2, so it's definitely tolerable. I know I could go home (with pay) if I just told my boss I was having a bad Crohn's day, but I hate doing that. I feel like I need to save those favors for when I literally cannot get out of bed or am in the hospital.

 

[SarahAnne]

And that is what totally isn't fair about this disease.

People I know take off work all the time because they stayed out too late the night before and feel like crap, or they just want to goof off, when people like us have to work when we are sick just so we can save our days off when we feel like we're dying.

I realize I'm super lucky that I don't have to work right now, we are a little behind on a few bills but we can catch up.

I hope the heating pad and pain meds help, Steph. There's nothing worse than being at work when you feel like you're going to double over. :ghug:

 

[chrisnsteph1022]

I agree Sarah. Some people call in sick if they have sniffles. I come in to work, having diarrhea every hour, bleeding out of my ass and doubled over in pain, just in case it gets worse and I HAVE to miss work.

I just took a second pain pill. I only take half a percocet at work, so I can still function. I took half around 9 and half around noon.

 

[blessedwithfour]

Hi there! So sorry to hear your day is crummy. Hugs. I am waiting to hear if I can take the Imuran and I remember the dr telling me it takes 2-3 months to work. I'm just tapering off pred right now. I used to have a lot of blood but not so much. The part affected with me is in the terminal illium and I have fissures so not sure where the blood originates. I hope you feel better and your day brightens! Kelly

 

[summerday]

Aw I'm sorry to hear your having such a rough day. I'm also waiting for my Imuran to kick in and its so frustrating having to go into work and suffer through just in case someing "bad" happens. I always smile to myself when people at work say thing like "oh my lunch isn't sitting properly with me" LOL. Yea... "my tummy hurts too.........if only you knew what a real tummy ache felt like you wouldn't be complaining right now!!!" Of course I never say that but I sure want to sometimes. I hope you start to feel better soon

 

[suschex]

I'm so sorry you are having a rough day with pain and bleeding! I know how hard that makes it not just physically but emotionally as well. Toughing it out isn't a bad thing but make sure and take care of yourself too! Bleeding can get out of hand pretty easily and leave you in worse shape than you realize...just happend to me a month ago. I hope you are feeling a bit better and getting through your day!!!

Sending hugs your way!!!!
Suzanne

 

[chrisnsteph1022]

I only had blood one out of six times today, so maybe it was just a fluke. It was dark red and there's no rectal pain, so I'm pretty sure it's from my colon somewhere. Just weird that it only happened once.

 

[xJillx]

I come in to work, having diarrhea every hour, bleeding out of my ass and doubled over in pain, just in case it gets worse and I HAVE to miss work.

I do the same thing!!! My husband always says I should stay home, but I am like, "I need to save my time in case I get REALLY bad."

 

[suschex]

I only had blood one out of six times today, so maybe it was just a fluke. It was dark red and there's no rectal pain, so I'm pretty sure it's from my colon somewhere. Just weird that it only happened once.

That is weird but also good I guess...feel well soon!!!!:hug:

 

[chrisnsteph1022]

Nevermind-the blood is back. *sigh*

 

[Ian]

Sorry you're having a bad time Steph, hopefully the Imuran will improve things over time (it really sucks it takes so long!). Why is your doctor saying you're out of options though? You've only tried 1 biologic out of 3 and they are NOT interchangeable i.e. if you stop responding or never respond to one, it doesn't mean the others won't work. And in fact Cimzia isn't even available here in the UK yet because it wasn't deemed effective enough in trials, so if anything Remicade and Humira are likely to be MORE effective if/when you try them .

Do you take iron supplements by the way? I know they can be hard on the stomach but watch out for anaemia if you're bleeding. Hope you feel better soon x

 

[chrisnsteph1022]

My GI believes all the biologics are enough the same that it won't matter. I plan on trying remicade next, though.

 

[Ian]

Oh ok. Well there are MANY people on this website who would disagree with him from personal experience! As long as you can try them though, that's the main thing. I'd hate for his attitude to prevent that from happening - he might not have high hopes but he doesn't lose anything from letting you give them a shot, right? And like I said, Cimiza hasn't proven itself in quite the same way as the other two as far I understand. Remicade though, most people do great with. I think my doctor told me about 90% of people respond . Good luck with it if/when you try it, but I'm crossing my fingers the Imuran or the combo of Imuran and Cimzia does the trick eventually and you don't have to try anything else new just yet! x

 

[suschex]

Hope you are doing better this evening...or at least resting!!!

 

[xJillx]

I hope you are having a better day today.

And I agree with Ian, as well. Don't listen to your GI in that all biologicals work the same way. Many have had success with Humira after Remicade failed or vise versa. You do have more options.

 

[chrisnsteph1022]

I am having a much better day. No bleeding and the pain isn't as bad. Still there, of course, but tolerable.

I agree with you about the biologics. I plan on insisting on Remicade if this course of treatment fails. I've seen enough people on here switch and have varying levels of success with the different ones to just write those off without trying.

 

[SarahAnne]

Don't give up! It sounds like your GI could be a little more aggressive or proactive. I fired my last one for exactly that, after 3 years in a bad flare where he did practically nothing, I had to have surgery. I hope it works out for you, Steph! Feel better!

 

[Staceyscarlete]

Your GI needs to be willing to ty anything. Age is in fact very wrong in thinking they are interchangeable. I did so much research on both Remicade and Humira and while the basic plan I'd attack for both meds is the same they work differently and are made of different things. Humira is natural where Remicade is made with rat proteins. There are many people who didn't respond to one treatment but said that the other saved their life.
I'm sorry to hear about your bad day and can totally feel your pan. I'm also on Imuran 5 weeks and tapering from my pred. I haven't had a bowel movement in 6 days and I went a little bit this morning but had only mucus and blood. Not fun.