My Day To Gripe

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!

Tell me about it, I just made a appointment to see a specialist, the earliest I can get in is January 24th! -Jason

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.

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).....

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!

ill bet Jan 2nd so the prep can be enjoyed on new years eve!

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.

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!!

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.

Could it actually be a stomach bug you are dealing with?
At any rate.. as you know by now.. BEEN THERE. DONE THAT.

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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

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..

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.