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Mild Crohn's Questions

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Posted 12/15/2011 12:42 AM (GMT 0)
I have had crohn's for about 6 years. Ulcer is on the terminal illeum/jejunum area. Basically cramping and abdominal pain after bowel movement have been my biggest problems. I am on Pentasa. Recently I had some abdominal pain so I decided to make an appointment with my GI. Could only get in to see the nurse practitioner. He said since it had been 5 years since I last had the pill cam it would be a good idea to do a CT enterography. He called today to say that i had a big stone in my gall bladder, the liver was fine and I had mild inflamation in the same area that I had before. No thickening of the wall. Basically, it looked like it did five years ago. I told him my ab pain was better and he said if it continued then I should try entocort. I said the ab pain only lasted a few weeks and asked if I could try Librax. He said that only masks the problem and not many people use it anymore. I thought the librax would be good for anxiety as every time I get any pain I keep thinking the other shoe is going to fall and I am going to be running to the bathroom 20 times a day like I read about from some crohns sufferers. I told him that he and said that if I do not have that symptom now I probably wont...that now all chrons patients have that. My GI told me the same thing a few years ago but for some reason I don't believe it. This guy also told me that Pentasa really doesn't work and that I am wasting my money on it. I have an appointment with my regular GI in a month and will discuss these issues with him. I was hoping I could get other chrons patients opinions on this before I go see my GI. I really am not in much pain and would hate to start a new drug if I do not need to. Thanks.
Posted 12/15/2011 2:34 AM (GMT 0)
I wouldn't stop the Pentasa, as that might be what's keeping your mild Crohn's mild. At any rate, Crohn's is a chronic disease which tends to fester if left untreated. And while it festers, it does damage, which happily you seem to have avoided. If the pain does continue or worsen, I would consider taking the Entocort as well. It would only be temporary anyway, as it's a steroid and steroids are used to calm down flare-ups, not as long-term maintenance treatment.

Librax might help your symptoms, but your GI is right about one thing: it would only mask the problem if it did. It's not an antiinflammatory or immunesuppressant, so it wouldn't stop the Crohn's inflammation from happening in the first place, which is ideally what you want.

It's hard to say if your mild Crohn's will remain mild. For some people it does. Their Crohn's is relatively unchanging and flare-ups tend to remain at the same intensity throughout their lives. It's more likely that your Crohn's will follow that course than flare-up massively out of the blue. Easier said than done, but try not to stress over something that hasn't happened yet. And if it does, chances are you'd cope with it better than you think.
Posted 12/15/2011 2:41 AM (GMT 0)
Hello Ramman! If you have mild Crohn's I don't think you need to be on any big gun medicines. The anxiety your having will only make your symptoms worse so  I think a antianxiety medicine would benefit. If your feeling better then don't stress. If the inflammation is mild it wont cause you to go to the bathroom 20 plus times a day with horriable cramps, bloody stools etc. You may want to make an appointment to see your GI just to try to control your mild flare since you do have a little bit of inflammation. He/she might prescribe a short course of steroids.

   Pentasa works for MANY people here! You need to understand that just because one Crohnie has a bad experiance with a medicine doesn't mean you will. Their are other maintenece drugs if you don't think it's working like Apriso, Asacol etc. Crohn's is such an individualized disease! Yes, your Crohn's can develop into a more moderate/severe case. I don't think it will happen ANY time soon given what history you listed but I'm not a doctor. As long as your maintence medicine is working and you get that bit of inflammation down you'll be feeling good in remission! I have moderate/severe Crohn's but it''s always been that way. It's never been just 'mild'.

  The gallbladder issue concerns me the most. Gallstones were my first symptom of my first Crohn's flare. I waited it out & an outpatient surgery turned into a week long hospital stay. Are you going to see a surgeon about it? GB issues can cause diarrhea and crampyness also.

 Get well!

Posted 12/15/2011 2:55 AM (GMT 0)
I've heard the same thing from my GI as what your GI's nurse said: what your Crohn's does it will continue to do, and is unlikely to change its nature. I liked Pentasa a lot, although it is expensive, but my gosh, entocort is like pooping money. I don't know how the nurse got to suggesting you quit the Pentasa. Entocort would be a reasonable approach to treating a mild flare, but it is not a drug you should be on for more than a few months.

hijacking your post for a minute - NCOT nice to see you!!! - ok back to the response.

I also agree with keepingfaith that the gallstone deserves some attention. Perhaps that is the source of your abdominal pain? If you can get a HIDA scan they will make your gallbladder squeeze and you'll know if the pain is from there right away.
Posted 12/15/2011 1:42 PM (GMT 0)
Keepingfaith - I disagree with you on not needing the "Big Guns" for a mild case.  I have been told I have a mild case.  The location of my CD constantly changes and no medicine seemed to help so I am now on Humira (after built a resistance to Remicade). 

As everyone says, this DD is different for everyone.  Now, ramman, don't worry...from the sound of it you don't need the big guns yet.  I do agree that your pain might be from the gallbladder and you should get that looked at.  Just so you don't worry..gallbladder problems go hand in hand with Crohn's so it is normal to get stones and have a bad gallbladder.  I had mine out a number of years ago (first surgery due to CD).

Also, I have nothing against nurse practicioners, but I wouldn't listen to them for treatment on a chronic disease.  Get the opinion of a doctor.  Stay on the Pentasa until you speak with your GI.  As keepingfaith says, there are other meds you can try if the Pentasa doesn't work but leave that desicion up to the trained doctors.

Feel better and let us know what happens.

Posted 12/15/2011 2:05 PM (GMT 0)
I am another who has had success with using just the milder meds. When I flare generally a quick burst of steroids has been needed to quiet things back down.

As for the Librax, when I am crampy and poopy, it really helos alot to quiet not only my cramps and poopiness down but the anxiety that usually appears with it. I totally disagree witht the NP.

I would see the GI first and talk to him before stopping any meds. Hugs!
Posted 12/15/2011 4:25 PM (GMT 0)
Hi,
I have had mild Crohns like you - in my ileum and in my jejunum. (Not too many of us having it in the jejunum compared to ileum / colon area).

I started in 2007 with pred and used it for 3 months. Then my symptoms returned (when tapering the dose). I felt well while on big doses, but I wouldn't use prednisone for a long time on high doses, this could lead to serious side effects. Prednisone is a hard core medicine for the body all over.

I couldn't get some of the other Crohns medicines either, my doctor didn't believe in those hard cores like remicade or humira for me. I then had to something else. I searched the internet and found a lot if interesting stuff on Low dose Naltrexone. This medicine is compounded from Naltrexone (Revia or other brands) and is taken in minor doses, as low as 3. to 4.5 mg each day. The dose is so small it's compared as mild as homeopath medicines.

And the best part; it's not going to give you any long term side effects. It's also taking the pain, and even make you feel like in a better mood. I have used and is still using LDN for my Crohns that is considered moderate to severe. With LDN I do a score that is ridiculous low at the CDAI, am at a normal level. I got changes to the better within a day or two on LDN. First all my pain improved, then the diarrhea and cramps. Then my anemia and tiredness. All the fever got away too. Had low grade fever every day. Haven't had fever since diagnoses in 2007.

I would strongly suggest that you do a research on LDN, Low Dose Naltrexone.

Here's a place to go and read:
www.ldnscience.org

Here's another interesting and new place to read on doctors going to the Health Minister (England) and talking about LDN, a VERY interesting link showing you what LDN does to us, and what you should do to get a doctor interested in writing a script. (LDN is NOT illegal) !!!

http://www.theyworkforyou.com/debates/?id=2011-12-08a.490.0

If you want, please write me an email, and I'll try to do my best to answer more questions.
turn

Post Edited (BeeSting) : 12/15/2011 9:44:17 AM (GMT-7)

Posted 12/16/2011 4:50 AM (GMT 0)

@JavaJay: Depends on what you called mild. If you have mild inflammation but the inflammation, however mild, is located at various places then sure! You probably need the big gun medicines. I reread what I wrote and see how you could have took it the wrong way but the poster seems to be stating that his disease is in a localized area and the inflammation is fairly mild. I don't see a need for big gun medicines in a flare like that. I meant to put it "I don't think you need big gun medicines for an acute flare up in a localized area where there is mild inflammation." Sorry....Been a long week :-) It all made sense in my head. Not the keyboard apparently though.

Posted 12/16/2011 12:42 PM (GMT 0)
Ok, I understand now, and I agree...you don't need the big guns for an acute flare.  That is overkill.
Posted 12/16/2011 1:04 PM (GMT 0)
Is Enticort considered a big gun drug?
Posted 12/16/2011 1:22 PM (GMT 0)
I don't think so and is probably a good maintenance drug. I don't know too much about it but I am sure plenty of people on here do.
Posted 12/18/2011 12:41 AM (GMT 0)
No, Entocort is NOT a good maintenance drug. It is a steroid. It does thend to cause less side effects than prednisone since it seems to be more gut specific or at least less systemic than prednisone. However, it is a good drug to hit a case of mild inflammation, mild symptoms with. Just do a short tapering dose w/it.

I have mild Crohn's disease. Symptoms started in mid-1975, untreated until Dx'd in early 1976, couldn't tolerate the only drug offered to me, asulfadine, and by mid-1978 I ended up w/an emergency resection at Mayo Clinic, Rochester. I was then blessed w/a 20 year remission!!!!!

Since symptoms returned in 1998 I've been able to pretty much maintain remission or symptomatic remission (no symptoms but active inflammation) w/Pentasa and Imuran.

It takes Imuran up to 6 months to take full effect so you are usually given prednisone, entocort or in my case, at my request, Cipro to help the Imuran take effect. Only twice in the last 13 years have I had to resort to a short tapering dose of Entocort (knock, Knock, KNOCK).

I've found that for me the Pentasa can't quite do the trick alone, but neither can the Imuran seem to do the trick alone but combined they've done great for me.
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