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Pain - Yeah, it's me again

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Crohn's Disease
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Posted 1/3/2009 7:18 AM (GMT 0)
Sorry guys. I just need to vent. I feel like my pain is spiraling out of control. I'm taking at least 4 Norcos per day now and have been for the last few weeks. Ever since I got off the steroids and then go the stomach flu, it's been hard to make it through the day. I find myself panicking more about the pain getting out of control and so I try and catch it before it gets too bad, and sometimes I wonder if I could of made it through without the pain meds. Does that make sense? When I'm at home and DH is around. I will attempt my Levsin (anti-spasmatic) and a Xanax first if I'm not in pain, but I usually end up needing the pain meds. I can take .25mg of Xanax to calm me down during cramping until the Levsin can kick in (doesn't work as fast as the doc says, or my dose isn't strong enough .125mg). And, if it's bedtime and I have a spell, I will take a .5mg because it'll pretty much let me sleep.

I'm just terrified that my pain is spiraling out of control. I've had a bad spell around 5am (woken from dead sleep) for the last 4 or 5 days. Bad cramps followed by some firm stool and then lots of D. Once I get that out it hurts, so I take 2 pain pills, a Xanax, and Levsin, and try and get a few more hours of sleep. But, now I'm almost 2 hours late to work EVERY day.

I'm just frustrated. I don't know what to do. I don't like pain meds, and I know I need them and that I'm not *trying* to abuse them in anyway and I'm pretty smart about taking them, but I just think my pain is getting out of control again..and last time.. it landed me in the hospital for 8 days after a ER visit consisting of a lot of Dilaudid and Phenergan....

Does anyone have any advice? It'd be appreciated. And, I'm sorry to be discussing pain pills and such again. I was hoping some of this anxiety and all would disappear off the steroids.. I know I need a few more months to get it all out of my system as it's only been 2 weeks, but I think I need to increase my Celexa or something.. this is nuts....this is NOT me! I get nervous about things, but I don't run my brain 24/7 over something like this...it's just not me.
Posted 1/3/2009 7:28 AM (GMT 0)
the anxiety is sometimes the hardest symptom to deal with i started having crippling panic attacks. the best thing i did was see a cognitive behaviour thearapist to help learn new ways to cope.
Posted 1/3/2009 7:40 AM (GMT 0)
Interesting. I never had anxiety until I was dx. When I'm in remission, I have NO anxiety issues, not even depression issues. My anxiety is sort of compounded too. I lost a child 17 months ago and then flared this summer just before her 1st birthday. It just makes me more "on edge." My docs are all aware of it. I really do well with it normally, but I'm having more panic attacks with "pain" being the factor. I think THAT is what is bothering me....
Posted 1/3/2009 1:39 PM (GMT 0)
Kaycie has your Dr. mentioned resection? Sounds to me like there is a narrowing or blockage .You said that you landed in the hospital for 8 days what did they say was causing to to land there?Did they mention anyhting about obstruction?lol gail
Posted 1/3/2009 2:04 PM (GMT 0)
Kaycie I am so sorry to hear you are having such a difficult time? Have you contacted your GI about how bad your pain is? You might want to bring it to his attention because obviously the treatement you are on is not working and maybe something else needs to be tried. Also I wonder if some of your pain is not from constipation. You stated you have very hard stools and a difficult time passing them. Pain meds and anti spasmotics can cause alot of constipation. Maybe a fiber supplement or a stool softner would work to soften things up a little to help you pass it. Or you could have some narrowing going on in there. I think its time for you to get back in touch with your GI to figure out whats going on.

Good luck,
Gail *Nanners*
Posted 1/4/2009 9:13 PM (GMT 0)
Gail & Nanners - No mentioning of a resection. My primary disease is located in my rectum. So, if I have surgical intervention, it means permanent ostomy of some sort. I see my GI in 2 weeks. I definitely will be mentioning the increase in pain. I wake up and literally ache. My gut pain is more like a dull ache most of the time, but if it's cramping, I definitely try the Levsin BEFORE the narcotic. As for constipation? Nope, not really. Sometimes my Crohn's SEEMS like constipation because my rectum CAN get so swollen that it's hard to pass stool and it's narrow. I truly don't feel like I'm battling constipation at this point. I do take most of my meds sparingly because of the constipation side effects though. I'm fairly cautious and I always check to see if any of the drugs slow my GI system down (Levsin, Norco, Phenergan, Xanax, etc.) FWIW, my stool in the last few days has been VERY VERY green. It's firm, but it's still soft. It's narrower, but that could just mean my Rectum is swollen again, which it feels as if it is. So, I wonder JUST how anemic I am now. I'm going to address these issues with my researcher via email so she's aware and then in 2 weeks I'll address them with my GI. He's in St. Louis, so it's a 4 hour drive. I think I'll be fine for 2 more weeks, plus it'll give me a full month off steroids and we'll see what has happened to me in the mean time.

The main reason I keep "holding off" is we are entering the next phase of the trial and I will KNOW if I'm getting the drug. I'm crossing my fingers and hoping I'm going to get the max dose and if it dose something, then I'll stick with it. If I find out I'm getting the drug and having no relief, then I'm going to likely get out of the trial and look for some different alternatives of treatment with my GI. We might end up with the Tsaybri, which scares me, for some reason...

A quick question... do you guys think maybe a quick CAT scan of my GI track would show narrowing or blockage. I could see narrowing at this point, just from the inflammation, but I'm curious? I've never dealt much with either.

Thanks for the support guys. I don't feel like I support enough people here, but I sincerely respect everyone's knowledge and their willingness to help me.
Posted 1/6/2009 12:36 AM (GMT 0)
Hi Kaycie The CT might be something you could talk to your GI about. Let us know when you find out what you have been getting the real med or placebo . From what I read grren stool can be from rapid transit time , bile is what tuns stools brown. Why would it be permanent ostomy I have heard of giving things a rest then reconnecting.Anyway I am hoping you will get some relief soon I have read your post and know you have been going threw some hard times,hang in there. lol gail
Posted 1/6/2009 2:30 AM (GMT 0)
Gail - You are right. My surgeon mentioned that it would LIKELY be a permanent ostomy, but he DID make "mention" that we might be able to do a temporary. Until we get to that point, it's hard to say I guess? I'm starting to read more up on it though, that's for sure!

I'll let you all know about the ABT-874. I'm not 100% sure if I'll know what I got for the first 3 months, but it's being re-randomized, so I'll know WHAT I'm getting at least this time on! I'm anxious!

Might ask for the CT. Or maybe he has some other suggestions? We shall see...
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