My Day To Gripe

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CrohnieToo
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Date Joined May 2003
Total Posts : 9448
   Posted 11/27/2007 7:50 AM (GMT -7)   
Grrrrrr! I'm in a clinical trial for COPD at U of M. It involves a low dose of Zithromax (or placebo) once a day. The theory being that Zithromax has some anti-inflammatory properties. My Crohn's has usually responded well to antibiotics and I've never had a problem w/Zithromax. I started the clinical trial last January and this January will be my last visit.
 
I've done great all this while - until the last 2 months I've had some minor indications that the Crohn's wasn't fully asleep and dormant. (I had been doing so well I quit taking the Pentasa daily and was just taking my Imuran).
 
The last 2 months or so my appetite has been steadily declining and my weight has been SLOWLY dropping. But the last week or so things have escalated and I've had a few pain episodes. Nothing like when the Crohn's first hit but .... I kept meaning to re-start the Pentasa but its been SO NICE just popping 4 pills a day instead of 20...
 
Yeah, well, U of M was concerned about the loss of appetite despite I told them it wasn't uncommon w/Crohn's and they insisted that I go to my doctor about it as it "could" be a side effect of the Zithromax (if I'm on it instead of the placebo).
 
So I called my gastro's office. I'm overdue by a year for a colonoscopy anyway and have been putting off having to do that d*mn prep! But I wanted to see her first as I "suspect" I might need an upper scope as well. (Joy, joy). Ha! They are booking appointments for her into February but I could see her PA next month! (Her PA and I don't see eye to eye on a few things). I explained WHY I needed the appointment thinking the mention of U of M would add a little weight. No dice. February or the PA. But I was civil ... I let them set the appointment w/the PA - just in case.
 
Actually, I was FUMING! What the h*ll good is a doctor if you can't see them when you need them? I know if I was still volunteering in the Endo department and ran into her she'd tell me to call the office and tell them to work me in her next day in the office. BUT - I'm getting more and more stiff-necked in my old age. (I must be masochistic and enjoy cutting my nose off to spite my face).
 
So - to keep U of M happy I made an appointment w/my family doctor. He gave me some Aciphex samples, agreed I should restart the Pentasa (joy!) and ordered some tests and said he was going to refer me for an upper and lower scope to my gastro. Ha! I asked what gastros some of his other Crohn's patients used which raised his eyebrows to the roof since he knows how much I like my gastro. I explained my phone call w/my gastro's office and told him rots o' ruck getting the scopes scheduled. HE said that ALL of the gastros in our area were in a similar situation, we just don't have enough gastros here. At that I lost it!!!
 
If these d*mn specialists would quit w/the booking these useless "well visit" appointments they would HAVE THE TIME to see their sick patients when those patients NEEDED them! Our family doctors are quite capable of taking care of us when we are doing well. IF we even need to see THEM when we are doing well and having no problems. Grrrrr. I had just been in to see her in August just to humor her since I was doing just fine.
 
He just smiled and let me vent and said the office would call me w/the appointments for the scopes and tests. Anyone wanna take bets on when the scopes will be scheduled?? I'm betting January at the earliest.
 
Meanwhile, I have plenty of Pentasa here. And ... I do have 3 fills for an Entocort script I haven't used ... I "ain't" that desperate - yet - for the Entocort. The one time I took it whilst on Imuran is the time I got that PAINFUL bout of shingles. Not anxious to encounter THEM again, thank you!
 
There ARE times I HATE the medical profession!


Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.

Post Edited (CrohnieToo) : 11/27/2007 7:55:06 AM (GMT-7)


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 11/27/2007 7:59 AM (GMT -7)   
I am right there with you sister. I am so sick and tired of being sick and tired and never being able to see my doc when needed.

As for the Pentasa, I know that after my last resection my (now fired) GI said that I could stop taking my Asacol as he saw no need for me to take it anymore. Within a month or so I started feeling like crap again. Went and saw the now fired GI and he said "Well I don't know what to tell you, you just had surgery so this shouldn't be Crohns". Did no tests nothing just made that statement, hence he was fired. My new GI put me back on the Asacol and I began to feel more like myself in no time. Maybe, as much as you hate it, go back on the Pentasa in the meantime and see if that helps any.

Really sorry you are feeling bad again, but very glad to hear from you too. ((BIG HUGS))

God Bless,
Gail *Nanners*
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


Mac_Gyver
Regular Member


Date Joined Aug 2007
Total Posts : 350
   Posted 11/27/2007 9:50 AM (GMT -7)   
Tell me about it, I just made a appointment to see a specialist, the earliest I can get in is January 24th! -Jason
Symptoms Of Crohn's June of '06 (21 years old 285lbs). Colonoscopy in Jan '07 no sign of Crohn's.
Surgery for a Fistula in April '07, diagnosed suggestive Crohn's in May '07. August '07 small bowel follow
through, diagnosed with Crohn's (22 years old 160lbs). On HUMIRA, Prednisone

============================================


gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4095
   Posted 11/27/2007 9:55 AM (GMT -7)   
What about using the Crohn's team at U of M as long as you are there. They have a good reputation...do you know if they are good, or if that would be a possibility?
48 yr. old female, diagnosed with Crohn's Sept-Oct. 2007


inflamed
Veteran Member


Date Joined Nov 2005
Total Posts : 1340
   Posted 11/27/2007 10:58 AM (GMT -7)   
Can you go around your GIs office staff and talk right to him or his nurse? Whenever anything real is up with me, he finds a way to squeeze me in by staying after regular hours if he has to. I even had an emergency scope on a Saturday.

Of course when I call with a minor problem I tend to play phone tag for 2 weeks until my symptoms improve or I give up. But that's a different story...

Hope you get in to see somebody.
Currently in remission!


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 11/27/2007 11:19 AM (GMT -7)   
Hope you get things worked out .So what is Zithromax? Haven't heard of it. Hope the Pent. gets you feeling better. I know it can be frustrating getting things done so hope your test get scheduled soon. Hang in there .lol gail

Clcaj
Regular Member


Date Joined Oct 2007
Total Posts : 82
   Posted 11/27/2007 11:45 AM (GMT -7)   

I had the same problem with my gastro about a month ago in the midst of a flare up.  His nurse was so kind - she said 'all you patients with chronic illnesses want to wait until you're having a flare up and then see the gastro, when you should just be coming every 6 months'.....I wish I had thought fast enough to say 'oh - great idea - maybe I'll get lucky and be having my flare up on exactly those 2 days out of the year' - but instead I just booked an appt. for 2 months later and eventually (with the help and support of this forum) went to the ER and got the help I needed.

I then tried to find another gastro to become a 'new patient' too and I can't even get ANY appointment (their computer's don't go 'out that far')!!!!!   Can you believe it??

I feel your pain!  It didn't used to be this bad (being able to get appts).....


DX: mild to moderate Crohn's for 34 years
Additional benefits: chronic anemia, B12 deficient, peripheral neuropathy, facial mylagsia, joint pain, underactive thyriod
Current meds: Colozal, Nexium, Entocort, Flagyl, steriod cream, monthly B12 injections, Neurontin, Synthroid, Effexor ER, pain meds as needed


Sarita
Veteran Member


Date Joined Mar 2005
Total Posts : 2486
   Posted 11/27/2007 2:27 PM (GMT -7)   

I can't believe some of the crapola patients go through to see their docs!  Established patients should be able to get into see their specialists within 2 weeks, especially during a flare-up.  What I don't understand is how I'm able to get into see my PCP in a day or two and I have to wait several weeks to see the GI unless I'm close to comatose.  I think it's probably because the PCP works 80 hours a week and the GI works 40. 

What you should do if you really want to see your guy is call every day and ask if there have been any cancellations.  If you annoy them enough, they should be able to get you in.  It's really too bad that's the case, especially since most of us don't want to be "that annoying patient."

Another thing to do would be to ask to speak to your doc's nurse, or, even better yet, your doc.  That way you can bypass the office staff.


Co-moderator - IBS Forum


gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4095
   Posted 11/27/2007 6:06 PM (GMT -7)   
I can't say that I have been highly successful, because I still have trouble getting my GI to call back, but one thing I did was learn the names of the receptionist and nursing staff and try to become friends with them. Then, when I call, I say something like "Hey it's me again, I know this is not your fault, but I still haven't heard from the doc...what do you think I can do?" Also, if I have a routine or non-urgent question, I make sure that I say so, and make it ok to take a few days to call back, so hopefully when it's urgent they will know I am serious. Also, when I come for office visits, I'm very kind and friendly, and ask little questions to the staff, like, are you ready for the holidays, or something non-threatening like that. I have also tried to directly talk to the doc about what it feels like to sit in pain and worry and not be called....he promised to do better, but then gets busy and repeats his lousy patterns. So the staff loves me, and I'm still working on the doc!
48 yr. old female, diagnosed with Crohn's Sept-Oct. 2007


chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 11/27/2007 6:25 PM (GMT -7)   
C2 knows what the problem is......the gi only has one day for office visits and is scoping the rest of the time! :)

randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6049
   Posted 11/27/2007 8:32 PM (GMT -7)   
ill bet Jan 2nd so the prep can be enjoyed on new years eve!
randynoguts 



     http://www.geocities.com/randynogutsweb/


FamilyGuy
Forum Moderator


Date Joined Jan 2004
Total Posts : 3310
   Posted 11/27/2007 9:54 PM (GMT -7)   
randynoguts said...
ill bet Jan 2nd so the prep can be enjoyed on new years eve!

In addition to the new deductible.  devil
Jon,  Co-moderator for Crohn's Disease and Depression forums
 
"The man who insists upon seeing with perfect clearness before he decides, never decides. Accept life, and you must accept regret." -- Henri-Frédéric Amiel (1821-81), Swiss philosopher, poet 
 
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FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 11/27/2007 11:13 PM (GMT -7)   
C2- I remember when I posted awhile back if I should bother w/ my 6 month check up when I was in remission. Everyone said yes, build rapport, get your meds renewed, etc. You were the only one who said that they were a waste of time and detriment to those patients that are sick and need to be seen. I have to agree with you. I'm glad I went because the doc was very happy to hear I had improved so much. Well duh, if I hadn't I probably would have called you complaining. Anway... I think GI's should do more over the phone anyway. They don't have xray vision to look into our guts. They are just going to hear are symptoms and adjust our meds or order tests. Save us the gas, do it on the phone lol. And actually, mine is great about this. A lot of times he does stuff over the phone rather than in person. Love that.
26 Year old married female.  Diagnosed w/ CD 3 years ago, IBS for over 10 years before that, which was probably the CD.  Currently on Pentasa 4 pills/4x day, hysociamine prn, nexium, and ortho evra.  Good times!!!
 
 


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 11/28/2007 8:09 AM (GMT -7)   
RandyNoGuts, you absolutely cracked me up. And I NEEDED that because I am in no better mood today, nor was I yesterday. I did get a real shocker tho! The gastro's office called yesterday to schedule a scope. AND its to be done next THURSDAY!!! What they hay? I can get in for a scope SOONER than I can even get an appointment w/the PA? Its not like the scope is some add-on. Its scheduled for 10:30 in the morning. It really torques my jaws because I strongly feel there are some issues that should be discussed BEFORE the scope.

I'm think I am going to contact my gastro at Mayo Clinic as I think I'm going to have my annual scopes (have had Crohn's for 32 years) done there. I was Dx'd there and had my resection there. My family doctor and I can handle things in between and when and if not, to heck w/it, I can always resort to ER.

I guess I'm just in a foul mood. Just last Thursday when I asked my pulmonologist (who I usually like) about a medication and some info I had read in some PubMed abstracts he actually told me to stay away from PubMed, that I "wouldn't understand"!!! I was absolutely furious but for one of the FEW times in my life didn't say a word.

Thanks to all of you for reading thru my gripe and for your comments. I appreciate each and every one. (I'm glad I didn't bet my retirement check on the scope scheduling) *weak smile*

And now ... the foul mood I am in I think today will be a good day to go thru closets and dressers, etc. and throw a bunch of stuff OUT into the TRASH! At least that will make my hubby happy. I am such a pack rat.
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


ddr030505
Regular Member


Date Joined Nov 2007
Total Posts : 68
   Posted 11/28/2007 8:59 AM (GMT -7)   
Well I get to have the prep work tomorrow for a colonoscopy. but get this.. Liquid diet (we all know is pointless) untill 3p and from 4p on is the wonderful prep (drinking and all).. then I dont get to have me scope till 2 pm Friday.. That means 2 days of no food.. cause then after the scope i get to get together with a nurse to give me my first 4 shots of humira !!! I am feeling probably about as frustrated as you Crohnie jsut in different ways.... its just not our luck this month is it!! :) just remember though.. its next Thursday.. It comes way faster then you want it too.. Good Luck!!
23 year old married female Diagnosed Sept '03 still fighting for remission longest break was 9 mths
Asacol 6 400mg tabs aday
Entecort 9mg aday
Live Laugh Love, Live by this and you can fight anything!!
There are moments in your life that makes you and sets the course of who you're going to be. Sometimes there little, subtle moments. Sometimes, they're big moments you never saw coming. No one ask for their life to change, but it does. It's what you do afterwards that counts. That's when you find out who you are.
 


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 11/28/2007 12:47 PM (GMT -7)   
You have my sympathy, ddr030505. TOTALLY. That is barbaric, 2PM colonoscopy. At least mine is at 10:30 AM. I always schedule my scopes (when they are the routine, once a year scope) for first one in the morning. (I enjoy putting my gastro behind the rest of the day since my scopes take longer than most *wicked grin*). Hey, she and I are kindred spirits to begin with, we'll both be late for our own funerals!!
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 11/29/2007 6:29 PM (GMT -7)   
Darn! I'm getting started early. Moi, who almost never has diarrhea, who almost always gets constipated when the Crohn's is acting up, has had diarrhea for two days running now. If I can keep it up until next Thursday I won't have to worry about the prep!!! Started in at 6:30 today, just made the 4th trip and its only 8:30.

Had a CTA scan today. Moi, who tends to low BP, had to take 50 mg oral Lopressor at 9PM last night, 50 mg oral Lopressor at 8AM this morning and when I walked in the door of the imaging center the RECEPTIONIST handed me a glass of water to take another 50 mg of oral Lopressor. Then when they put the heart monitor on me to check my HR (they prefer it to be 55 BPM before starting the CTA but will do it at 60 BMP) my HR was all over the place from 64 to 90+ so they gave me in total 3 IV doses of Lopressor. They were debating giving a 4th and last dose of IV Lopressor that they would be willing to give me when I suggested that MAYBE my COPD had something to do w/the Lopressor response so they gave me 2L of 02. Ha! My HR jumped up to as high as 121 BPM. And it wouldn't go below 90+. Then they finally decided the problem was the monitor was reading my T-wave and opted to start the scan.

Surprisingly to me, given all the Lopressor in me, I was able to walk out of the facility, drive to meet my daughter for lunch and go shopping. No dizziness. No weakness. Didn't need any 02. Nothing.
 
Ha! Fritzy. Getting a phone call request thru to the gastro is like pulling hen's teeth. If you get a call back it is from the PA.


Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.

Post Edited (CrohnieToo) : 11/29/2007 6:32:32 PM (GMT-7)


Mac_Gyver
Regular Member


Date Joined Aug 2007
Total Posts : 350
   Posted 11/29/2007 6:40 PM (GMT -7)   
FamilyGuy said...
randynoguts said...
ill bet Jan 2nd so the prep can be enjoyed on new years eve!

In addition to the new deductible.  devil

Would the insurance companys want it any other way?

Symptoms Of Crohn's June of '06 (21 years old 285lbs). Colonoscopy in Jan '07 no sign of Crohn's.
Surgery for a Fistula in April '07, diagnosed suggestive Crohn's in May '07. August '07 small bowel follow
through, diagnosed with Crohn's (22 years old 160lbs). On HUMIRA, Prednisone

============================================


Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 11/29/2007 7:30 PM (GMT -7)   
Could it actually be a stomach bug you are dealing with?
At any rate.. as you know by now.. BEEN THERE. DONE THAT.

****
Sarita 2 days to see your GP? I usually can get in the same day ( though it means waiting an hour or more longer..)

Matthew

CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 11/30/2007 7:48 AM (GMT -7)   
Yeah, haven't we all, sad to say. I don't think its a "bug" simply because no nausea, no queasies, no feeling feverish. Whatever, I wish it had held off a couple of days, at least until Monday or Tuesday, 'cause I really don't feel like going thru this again Wednesday due to the prep. So far today so good. We shall see.
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 11/30/2007 8:08 AM (GMT -7)   
My guess is that you have the runs from getting the run around. I know when I have to deal with making appointments months in advance it riles my gut something awful. I once asked Nurse Ratchet, how far in advance does doc have to set up his T time at the local golf course ? She was not amused,,at least I have that..
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.


Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 11/30/2007 2:24 PM (GMT -7)   
Sniper is right, it might be the darned stress!

Matthew

RFWrangler
Regular Member


Date Joined Nov 2007
Total Posts : 38
   Posted 11/30/2007 4:10 PM (GMT -7)   
I understand where you are coming from CrohnieToo, I was having some very severe pain and I was scheduled to see the GI I was seeing. Well as I waited to get in to see her I was in and out of the ER with pain. One visit I was seen by a surgeon because my CT scan showed an elongated appendix. He said that he didn't think that I was having appendicitis but that he wanted to follow up with me. I was able to get in to his office sooner than the GI doctor and he said that he wanted to do a colonoscopy on me.

After seeing the surgeon I was finally able to see the GI doctor. She said that she wanted to do an upper endoscopy and scheduled me for that. The Surgeon's office called me saying that they had a cancellation and that they could fit me in for the colonoscopy sooner. The problem was that was the day that I was scheduled for the upper endoscopy with the GI. The surgeon said that he could do both at the same time and I canceled with the GI. The surgeon didn't see anything and said that he didn't know what else he could do for me.

I returned to the GI doctor and was told that she no longer wanted to see me because the surgeon did the scopes and my family doctor put me on pred. She sated that they could diagnose me.

I am sorry if I hurt her feelings but I was in extreme pain and in and out of the ER and wanted some answers as to why. I didn't much care about where they came from. My family doctor is think ing that I have Crohn's in my small intestine and it can't be seen by the scopes and isn't showing up on the CT scan.

Any way I can definitely relate to what you are going through. I wish you luck in getting a timely appointment.
Still not diagnosed. Problems since 2003
________________________________________________________________

Current meds Prednisone 5mg every other day, Donnatol 12.5mg as needed for cramping (doesn't help), Prevacid 30mg daily
________________________________________________________________

Other issues
Depression taking paxil 30mg daily
Injured Right knee with 2 failed surgeries
Herniated disc t11-t12 being treated

________________________________________________________________

I am currently on disability for my knee awaiting retraining.
________________________________________________________________

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