newly diagnosed and I hate it

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small town
New Member

Date Joined Oct 2008
Total Posts : 6
   Posted 10/2/2008 8:00 PM (GMT -7)   
Hello ... I was recently diagnosed with Crohn's.  My doctor put me on Asacol - 6 tablets daily, two weeks ago.  So far, it doesn't seem to help.  Today, I went to Abilene and went to Penny's ... bad mistake because I didn't know where their bathroom was.  It hit me all of a sudden, without warning as usual, and I didn't make it.  I left my undies in their trash.  I drove to Wal-Mart to buy underware, went to the bathroom and took care of business.  Not ten minutes later another "accident" happened.  This time I bought new jeans and headed to the car to make the 70 mile trip home.  Nope, didn't make it very far down the road when it happened again.  This has got to be one of the worse days I've had in a long time.  My doctor told me that we would try the Asacol until the 17th of this month and if it didn't work, he would probably put me on Ramicade.  I've had bowel problems for years along with arthritis of the spine.  Now I'm beginning to wonder if all of my joint and back pain isn't the Crohn's. 

Veteran Member

Date Joined Apr 2008
Total Posts : 1753
   Posted 10/2/2008 8:39 PM (GMT -7)   
Are the joint and spine troubles the reason you aren't taking prednisone(assuming that you aren't). There are other medications, antispasmodics specifically, to ease the bowels so you don't have quite so much cramping and/or activity going on in there. Surely there are other things your doctor can prescribe..

I'm really sorry that happened by the way. My heart goes out to you :(
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone(down to 10 mg), pentasa, alinia, bentyl, prilosec, tandem plus, humira, and good probiotics
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.

Regular Member

Date Joined Feb 2008
Total Posts : 298
   Posted 10/2/2008 8:39 PM (GMT -7)   
Welcome to the healing well site! This place has been a GREAT support system for me.

Don't worry, you definitely are not alone as far as accidents are concerned.

Has your doc put you on prednisone at all to try and get your flare under control? I've been on asacol, 6-MP, and am currently on Remicade. I have also been on prednisone simultaneously the bast two years. Steroids seems to be the only med that can actually get my flare under control. You may just need a dose of steroids to calm things down, but I'm not sure what your situation is and if you've had it before or not.

It's not a great drug to be on for a long period of time (trust me, I know) BUT it can be very beneficial in helping you get your flare in check and putting you in remission.

Good luck and please keep us posted!

Veteran Member

Date Joined Mar 2007
Total Posts : 4527
   Posted 10/3/2008 5:25 AM (GMT -7)   
Hi Hope the med kicks in soon. I have had a leave the undies in the trash before day. I now carry extra clothes just in case I went shopping on the week end and had a bag packed to take extra clothes and it was raining like old heck so of course the clothes to change my top was ,you guessed it home on the kitchen table. Did get to change into mt teens new top .The bottom made it threw the day without anything more then a small gust of wind. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still gail

Veteran Member

Date Joined Aug 2007
Total Posts : 1202
   Posted 10/3/2008 12:24 PM (GMT -7)   
Sorry to hear of your hard day. We all know how that feels. I keep a trash bag and wipes in the car now, no matter how "well" I feel! It's just better for my ego and confidence to not have to poop in my pants!

Yes, if the Asacol doesn't help soon, ask about prednisone. Also, you might benefit from some rectal meds, depending upon where your inflammation is. Those have always made a huge difference! They seem really icky at first, but you get used to it and it's not as big a deal when you can appreciate the benefits.

Remidade was great for me. It put me in remisson for 2 years. so, I hope you can feel optimistic with starting it. It might just put you in a good spot without having to take a million pills every day!
--40 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine
--rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--methylpred - finally off 6/15/08, tried Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08
--single mom to 10-yr-old girl

Regular Member

Date Joined Oct 2007
Total Posts : 208
   Posted 10/3/2008 12:38 PM (GMT -7)   
Asacol/Pentasa are more maintenence drugs, I would think you should be on a steroid as well to get things under control. Asacol definitely does not seem like enough to get you thru the flare. It sure wouldn't be/isn't for me!
Pentasa- 1000mg/2x 1/08; Percocet
Remicade 1st infusion 7/24/08
Ultram ER 200mg; Prilosec 40mg; Xanax-ANXIETY; Cymbalta 60mg
Entocort 9mg
Ferrous Sulfate 325mg/daily for anemia
Azathioprine 150mg
Currently on a Low-residue diet as of 11/26

I'm so tired, when will this get better?

Regular Member

Date Joined Jan 2008
Total Posts : 121
   Posted 10/3/2008 12:48 PM (GMT -7)   
Heya! I'm sorry to hear that you had a tough day. It's so discouraging sometimes. I agree with everyone here that you may need another drug temporarily until it's under control and then continue with the Asacol. Do you know if your Crohn's is in the colon or your small intestines? I read somewhere that Pentasa is better for Ileitis and small intestine Crohn's than Asacol because of where it dissolves. Anyway, I did prednisone when I flared (very reluctantly) and then I maintain with Pentasa and have relatively good results. The other thing that has helped me the most is changing my DIET. I was a vegetarian and it was literally killing my stomach. I suggest trying to figure out which foods seem to disagree with you more than others. For me it's fiber and nuts and grains and uncooked veggies mostly. I do fine with some grease and sugar.
Crohn's (dx 2006), severe migraines, Seborrheic Derm., Hemolytic Uremic Syndrome (1994), ulcers/GERD and possibly Fibromyalgia? Medications: Nexium, Pentasa, Cymbalta, Xysal, Yaz, Percocet or Vicodin as needed, Flintstone Vitamins (my favorite part!), vitamin D once weekly.

New Member

Date Joined Oct 2008
Total Posts : 2
   Posted 10/3/2008 1:29 PM (GMT -7)   
Sorry to hear about the horrible day you had, I've had plenty of them days myself. I've had crohn's for over half of my life. I was diagnosed on my 21st birthday back 27 years ago. The first drug they gave me was prednisone which helped a lot, and I hated the side affects. But you have to weight the pros and cons. I have tried most every thing that has been out there for crohns. I have been on many of the studies for the drugs.
I find that planning what and when I am going to eat helps out with the accidents. When I have a full day of activities or I'm away from the comforts of my own home, I tend to eat just enough to keep me going. I too like "Meowese" find that the fiber, nuts, grains and raw veggies tear my guts up. I also do much better with the dairy, grease and sugars. In fact way back many years ago when little was know about the disease my doctor's advice on the diet was to eat what I can tolerate. Though most of it only stayed in for a short period of time. I have found drinking breakfast shakes are helpful, I don't just drink them for breakfast. I also wait until dinner/supper time to eat a bigger meal.

Veteran Member

Date Joined Feb 2003
Total Posts : 1811
   Posted 10/3/2008 1:35 PM (GMT -7)   
Ugh, I have been there too. I'm sorry you had such a rough day. 6 pills of asacol doesn't sound like much. Especially if that is the only med you are taking. Maybe your GI will put you on remicade AND asacol? I tend to agree with the others that maybe you need a round of steroids to quiet everything down while your new meds start to work. Please don't hesitate to call your GI NOW if you don't feel like the meds are helping. I know that with some of it, it is a waiting-game, but really there ARE things he can do NOW to help you feel better. You will learn very quickly that if you don't look out for yourself, no one else will - sometimes not even your doctor. You will have to be very pro-active in your own care. It's hard to do when you feel so cruddy and you don't have the "fight" in you, but in the long run, you will be better off for it because the squeaky wheel DOES get the oil. Hope they can find the meds that work for you SOON! Feel better!

Regular Member

Date Joined Jul 2008
Total Posts : 71
   Posted 10/3/2008 10:11 PM (GMT -7)   
I live close to Abilene too, about 55 miles. I understand your frustration I've been there. The drive back can make me really anxious, I know where all the bathroom stops are. The Asacol you are taking is not much, but there are other things. Asacol is usually the first thing they try. Hope you find what helps you.
 DX'd with UC 2000.
 DX'd with CD 8-9-08
 allergic to Asacol
 Colazal made it worse
 Prednisone 20mg X2 daily   
 Flagyl 500mg X2 daily
 First Remicade infusion 8-9-08
 Toprol XL --  Hypertension
 Insulin   --   Diabetes 

Elite Member

Date Joined Feb 2004
Total Posts : 20577
   Posted 10/3/2008 10:16 PM (GMT -7)   
I'm surprised he's not going to try you on immuran before remicade unless you've already been down that road as well...CD in the colon (crohn's colitis) is definitely not fun, mind you it's no fun where ever the CD is affecting.

The only bothersome pain I've ever had was in my lower back and it was from my CD, maybe because of your CD being in the colon as mine is, is why there's lower back pain.

My bum is broken....there's a big crack down the middle of it! LOL :)

Veteran Member

Date Joined Jun 2008
Total Posts : 1058
   Posted 10/3/2008 10:42 PM (GMT -7)   
The back pain could easily be from Crohn's. Get a referral to a rheumatologist and ask about Ankylosing Spondylitis and Crohn's. It is treated with most of the same drugs that are used to treat Crohn's. There is an interesting mention of "Starch-free diet" on the Wikipedia page for AS. See: Wikipedia This sounds a lot like the ideas behind the Specific Carbohydrate Diet.
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