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Introducing myself

P

paddywack

I'm new here. Not new to IBD.

I'm allergic to azathioprine/Imuran. Found out the fun way.
Budesonide/entocort did nothing for me.
Methotrexate didn't help the crohn's but caused a lot of other problems. Prednisone turned me evil and made me fat. Really, though, does anyone NOT hate that stuff?

I've been on remicade every 8 weeks for about a year and a half. I'm not sure if I like it, but I guess I don't hate it.

My doctors keep leaving the clinic. I've been fortunate to have great providers but they keep getting recruited to bigger and better things.

I have endoscopic dilations on a regular basis.

And with the latest doc leaving, my next procedure is scheduled 2 months later than usual.

I'm anxious about delaying the appt, and debating whether to switch to another clinic (where my first good doc went), but would the scheduling be any better and would it mess up my infusion schedule, etc???!!

Stuff most people with IBD deal with. Nothing special. My symptoms are not as bad as many others'.

I work fulltime. I have bills and growing children. So even when I'm a fairly useless blob I go to work and do my best to stay in my desk chair.

If there's a thread for venting about doctors and clinics, would someone link me? :)
 
JessPeper

JessPeper

I think I would switch clinics. Its hard to come by a doctor that you like and trust. Sadly for me we have one GI doctor in town. I'm not impressed with him. I've had symptoms for 15 years it kept getting brushed off as one thing or another. Was finally diagnosed a year ago. I would have to travel at least an hour to see any other GI doctor.
 
P

paddywack

I live in an urban area and there are many clinics. There are also many patients, however, and getting an appointment is another story.

I made an appt with my primary doc (funny, b/c I see the specialists way more often) this week to discuss what's going on.

I get/have esophageal strictures, and it went untreated for many years, so the whole thing is scar tissue. The docs want to try and maintain the progress they've made through dilation.

Lately my bones/joints have been hurting and the past few weeks my throat feels like it's on fire.

Another round of "Am I crazy? A hypochondriac? Or is this yet another symptom?" If the joint pain was inflammatory, wouldn't the remi treat that, too???

I'm not supposed to take NSAIDs, but ibuprofen works best with the joint pain.

Past two days have been lousy for GI pain, bathroom trips, and fatigue. Yay.
 
P

paddywack

ronroush7 said:
I would consider going to a rheumatologist about the joint pain.
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Thanks for the input. They did the usual blood tests last week when I had my infusion, and the ESR and CRP levels are normal. I guess I expected those would show it if something was up? Although, in the past the CRP levels have been in the normal range when I was clearly not well.

My primary doc is familiar with CD, so I'll see what she says about seeing a rheumatologist. I don't know what they can do if the remicade is causing it. Methotrexate is off the table unless I get so violently ill that the side effects I experienced are better than the actual disease.
 
P

paddywack

ronroush7 said:
If the Remicade is the cause, they could switch you to Humira, Stelara, Entyvio or Simponi.
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I will keep that in mind, thanks.

Humira was discussed before I started Remicade, but I'm a giant chicken about needles, so we went with R instead.

I don't know anything about the others. Not yet, anyway.
 
JessPeper

JessPeper

paddywack said:
I live in an urban area and there are many clinics. There are also many patients, however, and getting an appointment is another story.

I made an appt with my primary doc (funny, b/c I see the specialists way more often) this week to discuss what's going on.

I get/have esophageal strictures, and it went untreated for many years, so the whole thing is scar tissue. The docs want to try and maintain the progress they've made through dilation.

Lately my bones/joints have been hurting and the past few weeks my throat feels like it's on fire.

Another round of "Am I crazy? A hypochondriac? Or is this yet another symptom?" If the joint pain was inflammatory, wouldn't the remi treat that, too???

I'm not supposed to take NSAIDs, but ibuprofen works best with the joint pain.

Past two days have been lousy for GI pain, bathroom trips, and fatigue. Yay.
Click to expand...
I know what you mean about not getting an appointment. I scheduled a consultation with one the of the GI doctors an hour away and its a two month wait! I'm in remission at the moment so the wait for me isn't so bad for me.

I know what you mean about the NSAIDs! When I was tapering off of prednisone my joints hurt so bad. One day to the point of going to the ER they told me to take Ibuprofen. Hello! IBD no NSAIDs but Tylenol wasn't cutting it so I used some Advil. Worked wonders!

As far as the fatigue do you take B12 at all? I take an over the counter B12 and it's worked wonders for me!
 
cmack

cmack

Moderator
Staff member
Location
Southern British Columbia
Welcome Paddy,

My doctor has told me to take Advil before too. He says I really shouldn't use it, but when I had severe headaches he recommended it in liquid gels taken with Percocet. He said it is nearly gone from your body in two hours when taken as a gel cap. That is what he said anyways. I also take B12 OTC 1200mcg time release every day and it upped my energy levels.

Sorry for the late welcome,

cmack
 
P

paddywack

JessPeper said:
I know what you mean about not getting an appointment. I scheduled a consultation with one the of the GI doctors an hour away and its a two month wait! I'm in remission at the moment so the wait for me isn't so bad for me.
I know what you mean about the NSAIDs! When I was tapering off of prednisone my joints hurt so bad. One day to the point of going to the ER they told me to take Ibuprofen. Hello! IBD no NSAIDs but Tylenol wasn't cutting it so I used some Advil. Worked wonders!
As far as the fatigue do you take B12 at all? I take an over the counter B12 and it's worked wonders for me!
Click to expand...
SMH. My clinic is 5 minutes from home but they're scheduling out to October as of last week. I'm on the schedule for September.

cmack said:
Welcome Paddy,

My doctor has told me to take Advil before too. He says I really shouldn't use it, but when I had severe headaches he recommended it in liquid gels taken with Percocet. He said it is nearly gone from your body in two hours when taken as a gel cap. That is what he said anyways. I also take B12 OTC 1200mcg time release every day and it upped my energy levels.

Sorry for the late welcome,

cmack
Click to expand...
I don't take B12, maybe I should do that. I take Vitamin D daily.

My recently departed doc said that occasional ibuprofen was not horrible if it was actually occasional and not a regular nor an excessive thing.

I have dysphagia. Can't swallow pills. I was told by numerous docs not to even try anymore. The pills get stuck, when I can't cough them out I've had to wait for them to dissolve in my throat (ouch). Basically a chemical burn.

So everything I take has to be liquid or something I can crush and drink or put in applesauce. Extended-release tabs are off the table.

So when I do take it, I usually dissolve a bunch of children's tabs in water and drink that. I can crush an adult tablet, but I get reflux when I do that.

It's funny when I take antibiotics... The docs have to get out a calculator and do the math for the liquid dosing on a person of my size. :lol2:

Thanks for the welcome!
 
JessPeper

JessPeper

The kids liquid antibiotics taste way better anyway! The smell of the antibiotics makes me not even want to put it in my mouth!
 
P

paddywack

Thank you all for your input. My primary doc ran tests to check for B12 and a couple of other things.

She also referred me to a rheumatologist, ordered an EGD for late July, and recommended an appointment with a nutritionist.

She has immediate family with crohn's and RA, so she's pretty helpful on the subject of autoimmune illnesses. And she reassures me I'm not crazy. Even though I feel like it.
 
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