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I can't stand my GI (long)

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Crohn's Disease
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Posted 10/15/2007 2:11 PM (GMT 0)
So I was hospitalized for the majority of Sept. And yes when I got out my GI had me on Remicade, 80mg of Pred, and several other things. Well I tapered the Pred without his permission. Yes, I shouldnt have and no I know I am no doctor. But I know what will probably put me in remission which is imuran, remicade, and asacol together.

Now because he had me on such a high dose of Pred I started having all kinds of issue, including seizure/stroke level blood pressure. I had to be put on 2 different kinds of BP meds, and ativan which did nothing for my irregular heartbeats and tachycardia along with PACS I was throwing.  So then I was switched to Clonapin per my PCP.

Now last week I asked for something for pain in the interim of the 8 weeks it takes for Imuran to take affect. He says, I just dont get how you can still be in pain. Your last CT showed inflammation going down, you should be stabalizing or whatever.

So I fessed up and told him maybe it was becuz I tapered my Pred...but that the Pred was causing me to be crazy, suicidal feeling and all kinds of crap. NOW IM considered a non-compliant patient and he said he would write nothing for pain for me. I was like whatever.  Then he booked me an appt with a colo-rectal surgeon just in case. And I promised him I would stay on at least 20mg of Pred and started taking 75mg of Imuran as well as being switched from Pentasa to Asacol. 

Fast forward to Satnight, I was in excruciating ripping my guts out pain, couldnt go to the bathroom, nausated as all get out...I was like crap I have an obstruction, then it started....I started going to the bathroom and havent stopped since...every 20mins..cramps, pain, diarrhea (tmi) and now my joints are hurting again..Im in a flare again I guess. Is it my fault? maybe but maybe not...I am in the middle of a terrible financial situation right now and maybe getting a seperation from my husband (STRESS)  SO I called him today/nurse actually and just spilled it...told her Im crapping my brains out..have fissures burning my ass and hemerroids the size of pro-golf balls.  devil    I want something for pain PLZZZZZZZZZZZZZZZZZZZZZ!!

His answer to everything is to admit me...well I dont want to go back into the hospital....and check this crap out...last time I was in the hospital..it was messed up. 2 Docs werent communicating, one was dosing me constantly with laxatives to get this contrast out of me to see an xray of my spine, the other was giving me pain meds to help with the cramping which was caused by the dosing. and I ended up with a Paralytic Bowel...npo'd for days and in pain. Then some stupid nurse said my Demerol was D/C for over 48 hrs so I sat in pain.  Would you want to return?

I hate him...I tried to switch to another guy who was highly recommended but when he got my chart, he called me and spoke to me for an hour of how he wouldnt have done anything different than what my doc had, and he said I need to stay with my own doc!!!!!!!!!!

What would u do? Im dreading this call back...Im sure it will my sarcastic doc saying Im not giving you crap for pain cuz you are non-compliant and how do I know you are taking the Pred and blah blah blah...I feel helpless. Im not some rehab patient! Im a person in pain! What does he think Im gonna go rob a pharmacy if he prescribes me something for pain?

 

Posted 10/15/2007 2:19 PM (GMT 0)
Wel, up the pred dose a bit. Than go back to your PCP & explain the ENTIRE situation. And you get him a referal to a different gastro not affliated with this guy.
However, be aware that Gastro's are not trained in pain relief & don't believe in it. You'll probably need your general care doctor or a pain specialist to get relief in THAT department, sadly enough.

Sincerely,
Matthew
Posted 10/15/2007 2:22 PM (GMT 0)
good advice...however...dont like my PCP either...she is the same way...she is like I dont want give you anything for pain because, people tend to like pain medicine for the euphoria it gives....***????????

I just moved to this area a year ago..is there some high statistical rate of addicts here??? int this small town of GA??

I mean I was in Baltimore last year and never had a problem...you think that city would be worse
Posted 10/15/2007 2:34 PM (GMT 0)
It sounds to me like the GI is punishing you for not following his directions.  I really hate that "should be" crap.  The tests show less inflammation, so you "should be" feeling better.  Uh huh.  And our immune systems should be protecting us, not tearing us up.  But they are.  So let's deal with what's actually happening, not what your tests say should be happening.  Buttheads.

No, I didn't sleep well last night.  Why do you ask? devil

I'd start looking for a new GP, too.  We probably can't avoid all discomfort with this disease, but there's no reason to live with excruciating pain.

Posted 10/15/2007 2:43 PM (GMT 0)
thank you bektold....just to hear that someone agrees "its like Im being punished" or scolded like a child....shows Im not crazy

I would love to put my GI on 80mg of Pred for over 4 weeks and see how he handles it.
Posted 10/15/2007 2:49 PM (GMT 0)
Oh I am so sorry that you are having to deal with all of this and I feel for you.Matthew is right they are not trained in pain controll.If it was me and as the other's have said I would find another GI that is in no way in the same group as theother GI and then I would go and see your PCP and ask for a referal to a pain Doctor so that you can get something to help with the pain that is what I did and I am glade that I did.Please let us know how you are doing.I hope that you get to feeling better.
Posted 10/15/2007 3:17 PM (GMT 0)
okay...so I took your all's advice...Im still waiting on the call back from my mean ol' GI but in the interim, I called my PCP for something and also left a message that if she wont prescribe me anything, can i get a referral to a pain mgmt person

HOPEFULLY! God will smile on me today

ps: its my anniversary today, 2 yrs, and not to sound mopey and sad but I had all these plans for today since my marriage has been suffering and now (if I may whine) I can barely walk around my house because it feels like (warningtmi) someone poured acid down my booty crack!!!!!!!!!
Posted 10/15/2007 3:33 PM (GMT 0)
song- so sorry you are going through h*ll. Take a hot bath w/ epsom salts. Put some hydrocordisone on it. Add some baby powder. Take a nap. And I hope you feel better by tonight to enjoy your anniversary. And while you bathe, light some candles just for good measure.
Posted 10/15/2007 3:45 PM (GMT 0)
Songstress I am so sorry you have so much going on right now and no one helping to ease your pain. I wish I had the magic answer for you you, but since I don't I just wanted to send you some (((BIG HUGS))). Sure hope you get some answers soon. God Bless and Happy Anniversary!!!
Posted 10/15/2007 7:29 PM (GMT 0)
Actually, research clearly shows pain mgt. patients DO NOT experience euphoria in response to pain meds. Your PCP is reciting old beliefs, not facts. I don't know that it would be any good to challenge her on this, but you could try. If it were me, I'd just find a new doc-PERIOD. But I don't know your entire situation, so I won't advise on this.
Why do docs continually recite old stuff as modern medicine? I read the same bloody thing in the Mayo clinic's book on Arthritis. Yet every study counters the old claim. You hardly ever get high from taking pain medicine for what it was designed to do, reduce pain. Sheessh. Dogma lives on & people suffer..

Matthew
Posted 10/15/2007 7:55 PM (GMT 0)
Amen Matthew!

Song- sorry to hear you having a terrible time. We all can relate. You got some good advice. Now try to relax as much as possible. I've been learning that these things don't get resolved quickly. If you do end up in the hospital I'd demand to see a pain mgmt doc whle you're there. Sometimes you have to be forthright. Not nasty though, just assertive.
Posted 10/15/2007 10:29 PM (GMT 0)
Holy cow! 80 mg of prednisone! That is the highest dosage I have ever heard! I have "severe" Crohn's, and they will only put me on 20 mg max. This is just my opinion, but no good doctor would put you on That much prednisone for an extended period of time. It's long and short-term side effects are way too detrimental. I would be climbing the walls...!

I truly hope you find a doctor who is a good fit for you. It took me a few years, but when I found her, I became the healthiest I ever was since being diagnosed. :-) :-)
Posted 10/16/2007 2:55 PM (GMT 0)
Wow, I didn't pay attention to the intial pred dosage. No wonder you couldn't stand it! I'd go insane. And then to be punished? Maybe you should consider a malpractice suit? But none of that helps you short term.

Matthew
Posted 10/16/2007 6:28 PM (GMT 0)
I know how you feel.. I live in Kentucky and there are so many people here on drugs who just doctor shop to get what they want. Most the time I feel like my doctor thinks thats what I am doing. But I never took a pain pill until I got sick. Its not fair, they dont know what we are going through and most of them don't even try to understand. If you doc is anything like mine shewww I feel for ya. I can't get anything unless I'm admitted to the hospital they will give me a few here and there, however I have to beg for that. Its insane, you wonder what they make it for and who they give it to. But I can assure you one thing some doctors are nuts. If they were in our shoes just one day they probably wouldn't make it thru. Anyways, I know the feeling about the relationship issues as well. I have two babies and since I got sick its been rather hard for me to deal with everyday life. Getting them bathed, changed and things like that all by myself. I dont get much help so thats the hardest thing. My fiance and I fight a lot bc I just get fed up after so long w/o a break from anyone. I didnt do this by myself and cant help that I have a horrible disease which makes it hard to even live anymore. Sometimes I just get so disgusted with everything, dont you? But we have to keep our faith everything happens for a reason whether we know it or not. Hope you feel better soon and know that you are not the only one having to deal with this. I feel for you, it will all work out soon.
Posted 10/18/2007 5:09 PM (GMT 0)
Some docs are like that. It's a shame. Pred gives me pain in my knees, hands, and arm at times. I never had this til I went on pred and the gi doc doesn't care. I need something for pain and got it from my fam doc, so that was good. Gave me Percocet and it helps, I only use it when I need it and try not to use it much as its not good in the long run.

I know what u mean about the thoughts and stuff, it does drive you insane at times. Pred is a horrible drug, it's helped me form my crap well but I'm still getting pain like yourself. Find another GI doc thats not with him (maybe a diff area all in general, like 10 miles away?) Good luck and best wishes!
Posted 10/19/2007 2:26 AM (GMT 0)
Of course, remeber that most doctors are taught/hope to fix the problem as quickly as possible. When they encounter people like us, incurable & chronically ill, they really are at a loss.. Its not fair, but then neither is life.
Fortunately, things are changing but very slowly..

Matthew
PLus, they are absolutely never taught how to medicate with opiates & related drugs, except maybe for post-op pain.
Posted 10/19/2007 10:20 AM (GMT 0)

First of all let me tell you that last year I was also on 80 mg of prednisone, I was really depressed, crying all day, moon face etc, but it did wonders on my bowels so if I was having a major flare like last year, I would still take it. 

Now, I also had a bad experience with my first GI, he is considered to be one of the best Crohn's specialist, and you realise that since Crohns here in Greece is a very rare disease, doctors who specialise in that area are only a few.  Anyway, I had to fix an appointment to see him and the waiting period was approx. 2 months.  Then I would wait to his office for about an hour, and when I finally saw him, he stayed with me for 10 minutes, unwilling to reply to my questions, and then I was walking home wondering what happened.  One day I saw some blood in the toilet, so I decided to call him so that he could advise me what to do.  You know what he told me over the phone?  "I have hundreds of patients, I don't even remember who you are, call my secretary and fix an appointment, so that I can see you"  My reply was "But doctor, your appointments are already fixed for the next month, what am I supposed to do until then? You told me not to take or change any madication without discussing with you first. What do you propose I should do until I see you?"  His reply, "If you feel that it's an emergency, go to the ER".  I hang up the phone, started crying, and that was the last time I spoke with him.  I found a great GI, who even gave me his mobile number to call him whenever I have questions, and he also sits with me for approx. 40 minutes in every visit, so that we can discuss the situation.  And believe it or not, I feel so much better, just knowing I have his mobile number in my purse.

Doctors should also be studying bed side manners, apart from medicine. 

Christina

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