What is next?

[smartjweir]

diagnosed with Crohns in nov 2012. usualy sever pain and diarrheah. excuse my spelling its horrible. new symptom extreme pain in left side with no diarrheah for more than 48 hrs ended with ER visit and 6 new meds. whats next. im scared and going a little crazy. I dont feel my dr is doign everything he can for me but I understand no one has the same crohns. and in 6 months it will all have changed. I have sores in my mouth is that normal? I currently take pentasa budesonide prednisone zofran donnatal. When i get a bad flare up am i just suppose to suffer what are my options going to er is not fun and its expensive. What test do i need to ask my dr for. I have had colonascopy pill cam and CT scan. I have thicking of the intestine wall. and severe inflamation. :confused2:

 

[Clash]

Welcome to the forum. How long have you been on those meds? When was the testing you mentioned?

Mouth ulcers are fairly common with CD, my son usually gets them when he flares. It doesn't mean everyone will get them or that you will get them every time you flare. Sometimes the ulcers can be due to vitamin deficiencies such B12 or iron. Vitamin deficiencies can also be common with Crohn's disease.

Prednisone usually works fairly quickly, budesonide takes a little longer but steroids aren't meant to be long term maintenance meds and pentasa may not be strong enough to control your flare. Make sure you report all your new symptoms to your GI so they can stay on top of your flare.

I hope you are feeling better soon.

 

[afidz]

Hey neighbor (ish) I live just North of Dallas, so not to far from you
I was going to say the same thing as Clash, steroids should not be long term. Pentasa is generally used to treat UC. Although UC and Crohn's are very similar, they do need to be treated differently. UC effects only one layer of the intestinal wall where as Crohn's effects all the layers. Pentasa only treats the first layer which may be the reason why you still aren't feeling well.
As far as what tests to ask for, its never a bad idea to get blood tests done regularly. Our blood can tell us a lot about whats going on. It can tell if there is inflammation in the body or if any of our vitamin levels or low. It can also detect certain enzymes that could mean one of our organs isn't functioning well.
I know ER's are expensive, but if you have to go, then you need to. If it is during business hours, try to get a hold of your doctor or their nurse first. But don't ever be afraid of going to the ER. Being alive is more important than the cost.

 

[nogutsnoglory]

Welcome to our forum.

I'm sorry you are suffering and that your meds haven't been working effectively for you. How long have you been on them? It's a really tough and strange disease and sometimes there is no rhyme or reason why we flare or why some treatments work while others don't or even worse, end up hurting us.

I think that you need to feel comfortable and confident with your doctor. You can always go elsewhere if you think you might be led the wrong way. You can also seek a second opinion and get a feel for a new doc before switching.

 

[smartjweir]

My ct scan was last Friday night I have an appt with GI DR on the 10th. Pill cam was in March 2013 I don't believe there has been any blood work by my GIdr. I have been on pentasa and budesonide for 1 yr. prednisone donnatal and zofran for 1 week. Prednisone is making me crazy. Thanks for all of your help I think just talking about it and getting informed from people who r dealing with the same thing is so helpful I don't feel so alone. I don't want to complain all the time I really want to be positive. My fam is tired of listening to me whine I'm sure of it.