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Crohn's Disease Forum » Support Forum » Another appt with University hospital GI


09-20-2006, 09:59 AM   #1
Skinsfan1229
 
Another appt with University hospital GI

Well last week I had an appointment with the university hospital GI, he runs all the clinical trials in the region, and also does some clinical trials with celiac disease.

Well long story short, he always scares me, because he's a professor at a top school, and I overhear him talking about that I have severe and complicated case.

Even though I have an illiostomy, I have gotten another rectal abcess, which I had lanced in outpatient surgery last thursday, and had a abdominal abcess back in july. He thiinks that since they heal over then bust again that either might be connected to my bowels. I'm already taking so many meds, and have had numerous surgeries. Now I'm on methotrexate and about to go back on remicade, with loading dosese at 2,4,6 weeks then every 8 weeks, and after a few infusion I will be bumped up to 10mg per kilo, instead of the normal 5mg per kilo. Ive literally tried everything, this is the last straw, I've had so many surgeries. When is it going to get better?

I also saw my psychiatrist for the first time in 15 months. Put me on celexa, and xanax which I was already taking, I have to take a xanax bar..2mg which actually is making me more anxious since taking it like that, I can tell when the med stops working because I'm twice as anxious as before taking it. So he called me in klonopin today which I will pick up later, tends to be a slower release, or atleast I dont "come down hard" from it like xanax.

The university hospital GI scares me, he sees the more severe and hard cases, and for him to say that i'm severe and complicated must mean something. I mean I honestly knew I was more severe then most people but, for a professor to say it....thats a different story.

Well guys I'm off to get my methotrexate injection, this is m 8th one. Havent been on an immuno-modulator in 3 years because 6mp suppressed my bone marrow, but the metho seems to be working, my labs are looking better every week my local GI says.

Hope everyone is doing ok...I've been busy lately and not participating like I would like on the forum. I like to be here everyday, know how everyone is getting along, and if they need anything. I know we all need support, but sometimes we need a little more then that...
09-20-2006, 02:06 PM   #2
Jeff D.
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Join Date: Apr 2006
Good luck Skins. I hope that they can find something to work for you man.

I used to take celexa and started to go off the wall crazy so they stopped making me take it. So if your friends or family tell you you are acting strange as in not good then ask about stopping celexa.

Best of luck
09-20-2006, 05:07 PM   #3
mikeyarmo
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Location: Toronto, Ontario
Head up Chris. Don't stress out or get blue over your situation. Things can be depressing when on many meds and nothing seems to be working, but this disease has a way of changing directions fast. Things can clear up all by themselves for no reason, so just stay positive and relax. Stress is not helping, so just try and take things in stride.
09-20-2006, 06:01 PM   #4
xrayzerase
 
just went to look at your story page again..
not sure...why klonopin?
i hope i'm not being too nosy -if i am just let me know but...
i just was wondering when you started going to the psychiatrist-and-outside of your recent experience w celexa..what other meds have you been on? and -is it "for" anxiety/depression..or..?
i am glad to hear your labs are looking good.
good luck with going back on remicade...
09-21-2006, 08:52 AM   #5
Skinsfan1229
 
Oh no, I dont take any question or comment on the forum as nosey.

I went to the same psychiatrist for a while, started about 5 years ago or 6, saw him for about 2 years, then became sick with crohns and diagnosed...ironically, the depression/anxiety cleared up when diagnosed and it stayed A ok until just recently since this past may really.

I cant remember EVERYTHING I've tried but have tried a few. Zoloft, Lexapro, Paxil, Wellbutrin, Celexa, xanax, klonopin, there are def more of the paxil and wellbutrin type in there somewhere just canat remember them all.

Recently I have just been going ot my PCP because he was giving me say 30 .5mg xanax and I would take 2 at a time, and they would last me for say 3 months or so, but now since I have a higher tolerance to pain medicines, and am still on them, 1mg doesnt seem to do anything, the Psychiatrist said that it made sense, that I could take 2mg but really it just seems to work for a little while then I almost like hit rock bottom, like a druggie of some sort, when I have taken klonopin, it seemed to gradually release almost, because I felt really good, uplifted, happy, cheerful for 8 to 12 hours, where as the xanax I sort of "come down" and its just worse then before I took the xanax, which by the way helped greatly in the past.

Psychiatrist, from what I can understand, put me on Celexa for depression, which is why my GI put me on it, and the xanax for anxiety. I saw PCP since and explained what he psychiatrist did, and he agreed and actually said he should have thought of the klonopin, so that makes me feel better that other doctors agree.

Hope this clears it up as much as possible
09-22-2006, 10:51 AM   #6
xrayzerase
 
thansk for sharing..
it is good you have taken (with good results) the klonopin before--so..i hope it works once again.
i am on prozac (10/20 -alternating days) and concerta-have add--but it took awhile to find the meds that helped w depression--and the add.
anxiety is hard..my dr just gave me adivan to help with the heartburn-which is chronic and can get really bad-and also-the adivan may help w anxiety. he mentioned xanax..but--this is what he prescribed--only .5 2x day-(if needed)-i do worry about getting high tolerance-like w the ambien and other meds--but..at this point--the burning -and the r0ole of the "nerves" -andxiety-trump my concern about tolerance etc. need something just to get through right now..
anyway--good luck on the klonopin---and remicaid..
09-22-2006, 01:13 PM   #7
Kev
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Join Date: Jun 2006
Location: Halifax, NS, Canada

My Support Groups:
Just an outsider looing at it from another vantage point... But, the fact that you've got the 'best' doctor in the area looking at your case (OMIGOD, my case is complex). ISN'T a negative... It's a POSITIVE. Think about it. The doctor you get doesn't have an impact on the severity of your case... your case would still be complex EVEN if you had the worst doctor in the area.. And from reading a lot of stories on here, it seems that everyone with IBD has had their share of complications and complexities... See? OK, so your case is complex. That makes it GREAT!!!! that you have access to the best doctor, the one who does clinical trials
etc.. You are in the front running for the best treatment, best diagnosis, etc, etc..

I feel that you need to talk to this doctor, explain that his/her prescense makes you feel alarmed about the serious of your condition... Sometime best 'clinical' dr's are the worst at people skills (so good they don't need to be kind/considerate).. I also feel that you need to talk to yourself.. convince you that this is 'GREAT' news!
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KEV

Dx'd July, 2006
Meds: Flagyl, Cipro, Pred, AZA.. to no effect
Low Dose Naltrexone Nov 2007 - May 2014
Remicade June 17th, 2014
09-22-2006, 10:06 PM   #8
Skinsfan1229
 
Well Thats what I thought is he wouldnt be very personal, just an in and out doctor, maybe seeing him for 4 or 5 minutes, but I actually spend atleast an hour with him each visit, and takes his time with me, totally different then what I expected.

I didnt mean I have the "best" doctor, lol, I know that people always say that, I meant that he's at a top school in the region and everything and is in high standings pretty much. I hope this explains a little better and doesnt make me feel so pointed out.
09-23-2006, 12:15 AM   #9
skeet
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Sounds to me, also, that having this particular doc could be a very good thing for you. Hope you continue to get improvements from the new drug routine.
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skeet
09-28-2006, 02:02 AM   #10
GNC Crohn's Man
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I agree with Kev... I love having good doctors... Because it is very easy for me to fire them... Ohhhhhh and I have... I loved telling young surgery students your fired go home... Or internal med students....
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