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Joshuaam82
New Member


Date Joined Dec 2007
Total Posts : 12
   Posted 12/14/2007 8:28 AM (GMT -7)   
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)


bektold
Regular Member


Date Joined Jul 2007
Total Posts : 456
   Posted 12/14/2007 8:58 AM (GMT -7)   

Find a new doc!  Fast!  Pentasa is NOT the only medication to treat Crohn's.  It's the most basic, and many doctors (mine included) feel that it's not particularly effective.  You deserve to have your concerns heard.  If your doctor is dismissing you, no matter how good s/he supposedly is, they aren't the doctor for you.  Get a copy of your records and a second opinion.

Depression is very common with IBD and other chronic conditions.  We feel like crap, and that wears you down eventually.  Especially when the treatments aren't working and it seems like there's no light at the end of the tunnel.  Talk to your family doctor or check the Psychology Today website.  There are therapists who specialize in helping people deal with chronic conditions.  Don't let this go.  I know it's overwhelming, but you can this DD under control with the right support.

Welcome to Healing Well.  There's lots of great support and information here.  I hope you start feeling better soon.


Clcaj
Regular Member


Date Joined Oct 2007
Total Posts : 82
   Posted 12/14/2007 9:45 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!
DX: mild to moderate Crohn's for 34 years
Additional benefits: chronic anemia, B12 deficient, peripheral neuropathy, facial mylagsia, joint pain, underactive thyriod
Current meds: Colozal, Nexium, Entocort, Flagyl, steriod cream, monthly B12 injections, Neurontin, Synthroid, Effexor ER, pain meds as needed


Joshuaam82
New Member


Date Joined Dec 2007
Total Posts : 12
   Posted 12/14/2007 10:01 AM (GMT -7)   
Thanks guys I appreciate your advice and I am going to start looking into another GI.

besthoyboy
New Member


Date Joined Dec 2007
Total Posts : 11
   Posted 12/14/2007 10:41 AM (GMT -7)   
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.

bluemeanies
Veteran Member


Date Joined Jun 2004
Total Posts : 1372
   Posted 12/14/2007 11:12 AM (GMT -7)   
I was on Pentasa for years and my symptoms did not get better. I decided to stop Pentasa on my own and as I tapered off my symptoms got a little better. My gi kept telling me it was IBS with the crohn's. I don't think I have IBS, it was the Pentasa making me sicker. I recently moved and have an appointment with a new gi next Tuesday. I hope you are feeling better soon.
 


Joshuaam82
New Member


Date Joined Dec 2007
Total Posts : 12
   Posted 12/14/2007 11:57 AM (GMT -7)   
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. 

Chromes
Regular Member


Date Joined Jun 2006
Total Posts : 28
   Posted 12/14/2007 12:24 PM (GMT -7)   
Josh,
You definitely need a new doctor and an effective treatment plan. Don’t be afraid of Remicade. It has saved me and I now live a “completely” normal life. I’m back in the gym four times a week, playing softball, coaching my son’s baseball team, etc.. thanks to Christ and this drug!
Good luck and hang in there!

diafygi
New Member


Date Joined Nov 2007
Total Posts : 4
   Posted 12/14/2007 1:09 PM (GMT -7)   
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.

Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 12/14/2007 8:14 PM (GMT -7)   
Not only that, but the dosage he had you on was way too low for a CD patient. Standard Pentassa (origional pill) is 4 pills taken 4 times. Yep, 16 a day. It helped me greatly in the begining, but has gotten less effective.
Anyway, as stated, GET A NEW DOCTOR ASAP!

Sincerely,
Matthew

broomhilda
Veteran Member


Date Joined May 2007
Total Posts : 1488
   Posted 12/14/2007 8:45 PM (GMT -7)   
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.
Dx'd Jan'06, 1st Resection 7/06, Predinsone, Humira, Imuran, B12 injections, Nexium. Secondary conditions: Psorasis, Acne, Fatigue, Joint Pain, Lactose Intolerant, gallstones, fibroid cysts, peri-menopausal.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 12/15/2007 9:35 AM (GMT -7)   
Welcome Josh!!! There are so many more meds you can try. You really need to be on a cortisteroid to get things under control first. I take a sister med to Pentasa called Asacol and I respond so much better to it than to the Pentasa. Pentasa gave me alot of gas and bloating and I hated how it made me feel. Hopefully you can find a more sympathic and more knowledgeable doctor to help you get your Crohns under control. Look forward to hearing more from you.

God Bless,
Gail *Nanners*
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 12/15/2007 10:55 PM (GMT -7)   
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.
Adrienne,27
Diagnosed with Left-sided Ulcerative Colitis 1995 at 15
Tried: Prednisone, Rowasa & Hydrocortisone Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcourt, Colazol, Proctocort, Anamantle, etc...
Diagnosed with Ulcerative Proctitis with rectal fistula in 2004, put on Remicade
2007:Increased Remicade dosage-660mg every 6 weeks,diagnosed with Psoriatic Arthritis & Fibromyalgia
Current meds: Remicade 660mgs every 6 wks ( I may be developing antibodies?), Lomotil, Darvocet, Clorazepate, new meds: Prograf, Cymbalta, Lyrica


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10392
   Posted 12/16/2007 1:12 PM (GMT -7)   
You need a new GI, like, yesterday. This one doesn't communicate, won't listen to you, and shows no signs of caring what happens to you. You have many other options besides Pentasa, and there is a sequence of medications they go through to try to establish a remission.

I had a similar issue with my first GI. I went back to my primary care doctor, told her exactly what I didn't like about the GI, and gave her a chance to try another time. The second doctor she referred me to is amazing, and worked and worked with me until I got into remission.

It's also really important to educate yourself about Crohn's, because the more you know about the disease and treatment options, the better you'll be able to form a partnership with the doctor to help yourself. Yes, he's the "expert", but it's your body and you're paying him to help you. That sort of makes him your employee, doesn't it?
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
 
Intolerant to Asacol and rectal mesalamine preparations.
 
On Prednisone then Entocort 2001-2006 with only short periods off. 
 
Current meds are Colazal, Azathioprine and Remicade. In remission since April, 2006. Remicade has been my wonder drug.
 

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