Confused about meds and dr.

[lilninja]

confused about meds and dr.

I haven't seen my Dr. since I left the hospital last week. I have an appointment to see her in two weeks. She called me in a perscription for pentasa 500mg x 8 a day and prednisone 10 mg x 4 a day. I'm not big on taking pills, so to me I feel like a druggie lol. Her office told me over the phone that i have crohn's diease. I guess i was wondering if this was normal to get this news over the phone and have to wait two weeks to talk about it with my Dr.? I'm really unsure whats going on. With the meds i feel fine, just afraid to eat alot of foods. But i am craving pizza and cheese burgers lol.

 

[Peaches]

Well - get ready to crave lots of food on the prednisone there buddy Not sure what your symptoms are, but those are the two classic meds they start most Crohn's patients on once they have been diagnosed. You will eventually taper off of the prednisone - it is sort of a quick fix type medication to get the inflammation under control quickly. The Pentasa is a maintenance type drug that you can use long term, so you will continue using it more than likely once the pred has been tapered down.

Make sure you are taking a good dose of Calcium and Vitamin D whenever you are taking prednisone to protect your bones. You also may experience some insomnia after a week or so of taking it - maybe not (don't want to plant ideas in your head!). So - if it becomes a problem, share that with your doctor as you may need another medication to help you sleep. You can also get food cravings - just try to watch yourself and not go overboard. Pred is notorious for helping you gain weight - whether you need it or not. If you need to gain weight - then that is great!

I'd go ahead and keep taking the meds until you meet with your doc and they will probably explain all of this to you. Glad you have joined us here - we are happy to help you - especially here at the beginning when most people have so many questions.

 

[lilninja]

i when to the er two weeks ago with a high fever, vomiting, diarrhea and severe stomach pain.

 

[uab grad student]

Welcome, Lil Ninja!

I think it is strange that they called you and told you that you have Crohn's over the phone. Not much for bedside manner, if you ask me. However, the drugs they started you on are pretty normal for Crohnies so I'd stick with it and when you go back in a couple of weeks ask for more information about your diagnosis. Were you diagnosed by a colonoscopy or other procedure? If so, I'd ask what part of the intestine is involved since this will help you understand your condition better.

Best of luck and hope you find this forum as helpful as I have

 

[Peaches]

Well - they put on Pentasa which usually means your disease is around our ileum (end of small intestine - joins to colon) - I *think* this is the most common area to get Crohn's. If it was very narrowed from inflammation - then you may have had a bit of a blockage as well - but I'm just guessing at this point. Did they do an upper GI as well? Maybe you have something going on in your stomach as well? Crohn's can effect you from the tip of your tongue all the way through to your bum and anywhere in between. You can also have these things called EIM (extra intestinal manifestations) such as eye issues (uveitis), arthritis or achy joints, and swollen bumps around your ankles or other areas. I'm just telling you this so if you have any of these things you can think "oh- that is probably related to my Crohn's!". It tends to be a sign of disease activity.

Your number one goal at this point should be to get the inflammation under control and to try and get the disease into remission. That is what the medications are good for. You should also consider looking at your diet (we have lots of info on that here as well - there is a whole section) as well. If you eat a lot of refined sugars - you might want to think about changing that habit. And stress plays a big role in the disease process. The less stress you have - the better off one tends to be. While not always reasonable - try to keep your stress level to a minimum if possible.

Now - the rest - the doctor will hopefully tell you. I wouldn't worry too much about all the specifics. Just get those medications on board and let's see if they start helping with your symptoms. Prednisone usually helps me feel a LOT better within a week or two of starting it. Just make sure you take that medication *exactly* as the doctor prescribes - very important.

 

[uab grad student]

I agree totally with Peaches... as usual.

 

[lilninja]

The cat scan showed inflammation in my small and large intestines. but the colonoscopy and biopsy showed the crohn's.

 

[Crohn's 35]

I agree totally with Peaches... as usual.

Ditto, and Welcome li ninja... this whole disease thing is confusing, I have had this disease along time and it still baffles me sometimes.

Glad you found us, keep us updated!

 

[Tan]

Hi there... welcome to the forum.

Your symptoms are very similar to mine!! I too was put on meds before officially seeing my GI after my scope. I spoke to him for 5 seconds after my scope and then got an appointment for 3 weeks afterwards. Only prob was I just couldn't wait the 3 weeks to get onto something as I was so sick so he started me straight on Pred to see how I went. Sounds like you doctor is trying to get you undercontrol quickly and this way you should be a fair bit better by the time you see him next.
Good luck Im sure you GI will explain everything you need to know in two weeks, but in the mean time have a look around the forum and right down any questions you have so that way when you go and see your GI you wont forget them. And everything peaches said is spot on!

 

[Pirate]

Well hi again, Lilninja. Nice to see another Michigander on here. I was feeling lonely.

Peaches pretty much covered everything in her post. I just want to say that even though you are craving pizza and cheeseburgers take it slow. Works best if you eat smaller meals more often. It will take you a little bit to really learn what is safe and what will hurt like heck.

Hey nice bike. Is that your's?

 

[lilninja]

Well hi again, Lilninja. Nice to see another Michigander on here. I was feeling lonely.

Peaches pretty much covered everything in her post. I just want to say that even though you are craving pizza and cheeseburgers take it slow. Works best if you eat smaller meals more often. It will take you a little bit to really learn what is safe and what will hurt like heck.

Hey nice bike. Is that your's?

Ya its my baby! Just worried about how riding her this summer will be with Crohn's. My hubby and me usually go for long rides.

 

[Pirate]

You will have your good days and your bad days. My CD doesn't stop me from riding to much. My wife and I try to ride every weekend when we're not camping.

My baby's a 99 HD Ultra Classic. I'm getting old so I have to ride in real comfort. Plus I poke along.lol Maybe we'll see you guys on the road some day.

 

[lilninja]

You will have your good days and your bad days. My CD doesn't stop me from riding to much. My wife and I try to ride every weekend when we're not camping.

My baby's a 99 HD Ultra Classic. I'm getting old so I have to ride in real comfort. Plus I poke along.lol Maybe we'll see you guys on the road some day.

Mine is a kawasaki ninja 250, that needs a more comfortable seat, lol. I've been riding for two summers and love it. I always loved motorcycles, so once I married into a family of bikers i had to get one. We ride all over the state. Only a few more months till its time to ride!

 

[Pirate]

April !!!!!! Usually wait for the salt to get washed off the roads before getting the bike out. I can't wait that long.

 

[Mountaingem]

OMG! That is so insensitive. The dr. should have told you in person in case you had questions, in my opinion. I have taken Pentasa and prednisone for years, just wanted to pass on a few things I learned...
Take meds same time every day for most effectiveness. Keep taking Pentasa regularly even when you feel normal. If you quit the meds w/o the dr.'s supervision the Crohn's will soon remind you why you need medication.
Avoiding alcohol isn't necessary but I find it helps.
Try to avoid carbs and sugar while on pred. Your whole being will crave them but it's important to avoid them so you don't get pred. induced diabetes and too much weight gain. Also try to eat lots of yogurt for the calcium to avoid bone loss.
Pentasa makes me sensitive to heat/sun so be very careful to not get too warm esp. in the summer months.
Always drink lots of water, and drink sports drinks that are low in calories/sugar to avoid dehydration.
If Pentasa makes you queasy, peppermint Altoids help.
You might feel an overall sense of weakness/illness at first, but if you keep up the Pentasa it will subside. It just means it's fighting the illness. Sometimes you have to get through the bad with these drugs to feel better.
Best wishes and keep your spirits up!