What's next for me?

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tall girl
Regular Member


Date Joined Apr 2009
Total Posts : 68
   Posted 4/21/2009 9:01 AM (GMT -7)   
Hello All- New to both Crohn's and this forum. I was finally DXed with Crohn's 3 months ago after 8 monthes of severe symptoms. I started on Entecort immediatly. I was symptom free for about 3 weeks and was thrilled. All of a sudden my symptoms returned full force =( Then I was prescribed Pentasa (2 pills 3x a day) in addition to the entecort ( + major diet changes and restrictions). I am still expereincing symptoms. I keep asking my doctor what's next? Where and at what point do we try something else? He keeps telling me to continue with the current treatment and we will cross that bridge when we get there. From your experience, what's next for me? How long should I continue to be in pain ( + the other crappy symtomps) before we move on to another treatment? My other concern is, since I am always in some amount of pain, how do I know if I have a blockage or fistula or other complication needing immediate attention? I neeed alot of help at this point as I am still confused about this disease. Anything you can share with me would be appreciated!
 
PS. Sorry about the terrible spelling- obviously I can't spell (or eat dairy, or red meat, or fruits and veggies or anything good for that matter)
 
  

MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 4/21/2009 9:38 AM (GMT -7)   

Pentasa and most of the other Crohns medications are maintenance drugs, which means they are designed to keep you out of a chronic inflammatory state long term. Most GIS willl seek to stop a flare and halt the inflammation initially with a short course (probably a matter of weeks) of prednisone, which is a potent steroid that attacks the inflammation. Then the maintenance drug will take over. I am a little surprised that your GI did not start you off with prednisone to allow the pentasa to begin holding you in remission. You might ask about that.

Pentasa is the lowest potency maintanence drug, and it does not always work for some people. The frustrating thing abuot Crohns is that every case is different and every patient responds differently. So it is really trial and error to see what works for each person. The next step up from Pentasa would probably be 6mp or imuran, which are similar drugs that turn down your immune system a notch or two to control the inflammatory response. Above them are the biologics like remicade or humira. Traditionally, most doctors have started at the bottom and worked up through the drugs from pentase to 6 mp an remicade at the top, on the theory that there is no need to prescribe the most potent drugs until you know the patient will not respond to the lower ones. Some are now starting farther up the drug chain. Yours seems to be more traditional. I'm not sure there is a lot of research to support either approach conclusively.

As for strictures or blockages, the classic symptoms are severe pain, bloating and vomiting. It's usually bad enough to send you to the ER. A CT scan wil usually show it. From your post I don't sense that you are there now . . . and be aware that not all Crohns patients experience strictures or obstructions. You said you were recently diagnosed, and that would imply you had a colonoscopy. It would have shown any narrowing in the colon. To look for narrowing and potential stricture areas in the small intestine, they will do a small bowel follow through series of Xrays after you drink barium. It is a pretty conclusive test too. A good rule with this disease is not to borrow trouble before it appears, as some patients have serious complications early on (like strictures or fistulas), some do not have them for some time and others never have them at all.

I would think your first step could be consulting with the GI about your ongoing symptoms, noting that the Pentasa is not oding the job at this point and asking for a short course of Prednisone to get you into remission. Then perhaps continue with the penatasa unless and until severe symptoms return and asking for a step up, perhaps to 6mp, with maybe a second course of prednisone to stablize you.

There are some good general informational links at the top of this forum page and also on the Crohns Colitis Foundation of American website. Good luck . . . you are asking the right questions.


tall girl
Regular Member


Date Joined Apr 2009
Total Posts : 68
   Posted 4/21/2009 9:50 AM (GMT -7)   
Mike- Is Predisone diffrent from Entecort?
23/ Female DXed Crohn's 1/09
Many diet restictions
Entecort, Pentasa, Zantac, Fish Oil
Still confused and sometimes angry/frustrated
However I am learning to laugh at all this more often


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 4/21/2009 10:00 AM (GMT -7)   
They are both steroids but the Prednisone seems to be faster acting. The Entocort has less side effects, but not always as effective as the Prednisone. I too am surprised that he put you on Entocort first instead of the Pred.

Also, you might want to keep a food diary of which foods bother you and which don't. I personally follow a low residue diet. You can google it and get menu ideas. I try to keep my food easy to chew and easy to digest. Diet is pretty important with Crohns, because if you eat the wrong thing, you will have symptoms. But it is also very individual for each of us. Thats why I suggest the food diary to find out what works best for you.

Good luck,
Gail *Nanners*
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

tall girl
Regular Member


Date Joined Apr 2009
Total Posts : 68
   Posted 4/21/2009 10:18 AM (GMT -7)   
Thanks Nanner- I do keep a food diary and have identified some foods that seem to bother me. It is frustrating because some times I have an reaction to something I have eaten many times with no problem. I guess it will take sometime to figure it all out. I will look at the low residue diet. My mental relationship with food is starting to be resentful and bad. It seams I always have to make myself eat knowing that it might cause pain for days. Having to make that chioce is so aggrevating. Thanks to you both for your insite
23/ Female DXed Crohn's 1/09
Many diet restictions
Entecort, Pentasa, Zantac, Fish Oil
Still confused and sometimes angry/frustrated
However I am learning to laugh at all this more often


WriterMum
Regular Member


Date Joined Apr 2009
Total Posts : 166
   Posted 4/21/2009 10:27 AM (GMT -7)   
When I was diagnosed with Crohn's in 2005 I was started on Entocort (Budesonide) but it didn't work for me. The problem is that if the Crohn's is anywhere other than the ileum the medication won't necessarily really reach it. I have problems in the last 2 inches of my rectum as well as my ileum. My doctor sounds like yours - start small. This is not always the best approach as I have just experienced. I ended up in hospital after 6 weeks of progressively worse bleeding etc. - 1 week wait and see - 2 weeks doubling up my Salofalk - 3 weeks on 30mg of prednisone - 3 days in hospital on iv Sudo-Medrol. The hospital team has me on enemas etc. now plus prednisone. They were clear that it is important to get control of the flare quickly so as not to cause more damage. I see my gastroenterologist on Friday and I plan on telling him that in the future I would like to be a bit more aggressive with my flare treatment. What do other people think?

tall girl
Regular Member


Date Joined Apr 2009
Total Posts : 68
   Posted 4/21/2009 10:32 AM (GMT -7)   
That makes sense. My pain was in the lower abdomin but lately I have more pain higher than before. Do you think it'd possible the inflamation has spread to my stomach or small intestine and thats why the entecort stoped working suddenly? Any body else experience anything simialr?
23/ Female DXed Crohn's 1/09
Many diet restictions
Entecort, Pentasa, Zantac, Fish Oil
Still confused and sometimes angry/frustrated
However I am learning to laugh at all this more often


MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 4/21/2009 11:29 AM (GMT -7)   
Entocort is topical, like ointment for the skin. You swallow it and the coating dissolves about the time it reaches the targeted area and the steroids bathe the gastic mucosa. Pred is systemic -- it affects your whole body, like asprin or an antibiotic, and thus will address inflammation throughot the GI gract. The shifting pain is common in Crohns, since Crohns is characterized by "skip areas" . . . you can have a foot of badly inflamed bowel anywhere from mouth to anus with perfectly healthy cut on either side, then another two inches inflamed further down or up. Also, it is important to realize that Crohns is also a disease that waxes and wanes, sometimes independent of any medication affects. That's why we all go through periods where we feel pretty well, interrupted by flares where it seems we should get our mail in the bathrooma and feel like crap.
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