Need help

My name is Josh and I suffer from severe chron's disease, I was diagnoised back in July.  I was reffered to my GI by my primary physician who told me these people where great.  Upon my first visit with my GI he basically ruled everything out to three possible causes Crohn's, Colitis, or IBS he recomended me to go for a colonoscopy, after getting the procedure done he told me I had Ulcerative Colitis and he prescribed me to take Pentasa (2 tablets, 4 times a day) the doctor informed me that by taking this it would help me out by leaps and bounds, funny it has just made matters worse for me.  The doctor had me go for a upper GI, endoscopy, and a CT scan and every time I went for these procedures my GI was the one who performed them and I made sure to tell every time the pentasa is not working for me and it is just making me feel worse he was very dismissive and kept telling me I needed to stay on it.  Now his intial diagnosis was Ulcerative Colitis after colonoscopy every test he did he said there was nothing wrong with me and he cleared me off Ulcerative Colitis and he chalked it up to being IBS but still had me taking Pentasa.  Now after the last procedure which was the endoscopy, I decided to stop taking the pentasa as it was just making me feel even worse, I tried to consult the GI on many occasions but he was very dissmissive and would not listen to me.  I noticed I went to feeling better after stopping the pentasa and than about a week later my symptoms got worse.  I went back for a follow up and I ended up seeing his assistant who handles his apointments when he is not in the office, I explained to her that I stopped taking the pentasa and why and she became upset with me and told me I set my treatment back weeks, maybe months, and I asked her what exactly is wrong with me, she told me I had crohn's disease.  No for the past 3 months the GI knew I had Crhon's but never informed me he kept telling me I was fine. 

I am back on the Pentasa and still it just makes me feel worse my GI is telling me that it is the only thing on the market right now that can treat it, she has no anwsers for me when I ask her why I feel worse taking Pentasa and she continues to make me take it.  At this point I feel very hopeless, I have noticed I have become depressed, and I have even comptiplated commiting suicide to escape this (I know that is not the choice and I would never go through with it).  I feel like I am prisoner, my quality of life has greatly decreased.   

I guess my questions are this.

1) Is Pentasa the only medicine that can treat Crohn's?

2) Should I seek a second opinion?

I have to go for blood work and a ct scan this Monday, I really do not want to do it as these tests where performed and I know the GI is going to stay we can not find anything all it is inflamation and the Pentasa will help, any help would be greatly appreciated.

Post Edited (Joshuaam82) : 12/14/2007 8:36:16 AM (GMT-7)

I second the opinion of finding a new GI immediately.  There are many other treatment options available for Crohns and I can't believe your GI didn't tell you even had it.   That's despicable.  Start scheduling appts now for a couple of GI's - it takes a long time to get an appt. and you may need to try a few before you find the right one for you.    Hang in there - it will get better with the proper medication!

My situation sounds a lot like yours, however, my doctors kept looking and finally did find chrons and told me.  However, the pentasa makes me feel worse too.  The side affects of dizzeness and headaches affect me.  It makes it difficult to work because I can't focus.  It even turned my urine really dark on a couple of occassions.  I told my doctor and she check my blood to make sure it wasn't damaging anything and said it looked okay to maybe take a couple pills less, however, she wanted me to build up to the 6 pills a day asap.  So what is the use to go backwards when I am still going to go back to 6 pills anyways.  So I still keep taking it and hoping I will get use to it.  Good luck.

With the Pentasa it just seems to intensify the flares, I am really happy that I found this place it makes me feel a whole lot better talking with people who understand exactly how I feel.  Plus looking through some of the other topics I have found some helpful hints on how people manage their Crohn's. 

You definatly need to find a new doctor. For one thing, as far as pentasa, I don't think it even works unless you're taking about 16 tablits a day. Now I understand they have doubled the dosage in them.
For me, remicade has also changed my life. Look into it. I'd suggest remicade along with imuran.

Welcome Josh!

Don't EVER be afraid to be assertive with your doctors! Find a new GI!!! Pentasa didn't do diddly flop for me! I'm moderate to severe and have run the course of several therapies. Do remember though that some of these drugs can take up to 4 months to really get into your system. In my view...the pentasa at that low a dose is not an effective option for you. This is a frustrating disease and you will learn patience very quickly. If you feel you are losing interests in things you used to like to do, don't be afraid to ask your GP for help with the depression. Heck, I didn't even know I needed anything for depression until he put me on Lexapro....what a difference! Good luck to you and I hope you find a reprieve in your symptoms soon.

There were soo many meds that didn't work for me, made me worse, or I had bad side effects to. You need to find a GI who will work with you to find the right one. It is hard hearing a doctor treating someone like that. I can relate about the depression too. I hope you find a better doctor soon and feel better. Take care.