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Crohn's Disease
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Posted 10/20/2011 3:41 PM (GMT -5)
Hello all of you smart crohnnies out there,
I've had Crohn's disease for several years and have read tons of literature and I still don't think I completely understand this DD!!!! It drives me crazy!! So here's my story,

I have Crohn's in my terminal ileum and the beginning of my small intestine. After prednisone for a short time after diagnosis, and Pentasa I went in to remission with my Crohn's. A few years ago, I contracted Salmonella which put my GI system into a tailspin for many months, but then I recovered. I went through the past 2 years in remission. I was taking Pentasa. I have always had IBS with a tendency toward C, so I was also taking Probiotics, fiber (Metamucil and Citrucel) and colace daily. While I had days of C or upset GI system, for the most part I went about my happy life doing reasonably well.

Since early September, I've been miserable. It started with bad abdominal pain and D. We started by assuming infection based on high white blood cells in my stools and I tried Cipro. This stopped the D, but then I moved into C and pain whenever I eat practically anything. I had a colonoscopy which showed inflammation and a positive biopsy of active Crohn's in my ileum. At the time of the colonoscopy, my doc said to just stay on the Pentasa and follow up with him on Oct. 25. I was trying to hang in there but I've been increasingly miserable. I take Senokot for the C. If I take too much it turns into D. If I take too little, I have terrible pressure and pain. I'm also continuing all of the fiber, probiotics etc. So I called my doc, and he is doing an 8 day taper of Prednisone starting at 40mg. to see if it will help, and then I'm seeing him on Tuesday. Here are my questions:

1. Do the biopsies show degree of severity, or is it just surface area...like how much of your ileum is inflamed to decide on severity of illness?

2. How do doctors decide which patients to give the immunosuppressives, vs. which to give steroids or Pentasa?

3. Do you think the Pentasa is doing anything? I guess my question is that should I consider myself lucky I had a 2 year remission, or is it concerning that the Crohn's returned. Does it return for all of us no matter what we do?

4. I have a bad tendency to minimize my symptoms when I see the doc. Part of the reason for this is that there are so many of you out there that are so much worse off, so I feel guilty complaining. But I am pretty miserable. I've lost about 10 pounds since Sept. which I know is no big deal, but it is an indication of what a hard time I'm having with eating.

5. Any suggestions from those of you out there smarter than me will be greatly appreciated. All I know is I want to feel better, and I don't know how to get back there! Thanks for listening!!!!!
Posted 10/20/2011 5:06 PM (GMT -5)
Keep a written diary of your complaints and bring it to your visit. That should keep you honest with your DR. I'm like you - I don't like to complain. It took a lot of pushing from my rheumatologist and my husband to get me to speak frankly with my GI. Quality of life is an important consideration when making decisions about medication.

Your decision to go to stronger meds is going to depend on you and your DR. It sounds like your DR is like mine - conservative when it comes to meds. I suggest if the pred burst helps you that you might consider entocort, which is a steroid but is delivered topically directly in the terminal ileum. It is very good at dealing with Crohn's in the TI, and has much fewer systemic side effects than oral prednisone. It's pretty darn expensive, though. The usual recommendation is to stay on it for 3-6 months, no more.

Sometimes this darn disease just sneaks up on us. I'm sorry that you've had this recurrence. I maintain my remission with Pentasa and sulfasalazine, plus the other supplements and dietary changes you can see in my signature. Your daily dose of 2g of Pentasa is about the minimum therapeutic dose. You should consider increasing that to 3 or 4 g/day.
Posted 10/20/2011 5:49 PM (GMT -5)
So sorry you are not feeling well! I don't know the answers to your questions, but it might help to mix 4.5 mg LDN with the Pentasa, which has done the trick for my daughter.  

Actually, a ten pound weight loss in such a short period of time sounds like a big deal to me. Hopefully the pred will kick what seems to be a flare into submission fast and you will feel better soon!

Posted 10/20/2011 6:35 PM (GMT -5)
I'll try to answer your questions...

1). Struggling a tad with this, but I think the answer to your question is that the surface area that the disease covers would easily be seen by the camera used during the colonoscopy - it's purely visual. Biopsies on the other hand can show what the depth of inflammation is: that is to say how deep into the layers of the intestinal wall it goes. In Crohn's it can go all the way through, but in UC it will only affect the first layer of the intestinal lining, the mucosa. Biopsies can also show granulomas (a cluster of cells specific to Crohn's disease) and other signs of damage to the muscosa.

(Thanks Wiki :p)

2). It's pretty subjective. Depends on severity of disease, how well the patient has responded to other meds, whether the GI takes an aggressive or cautious approach, etc. A lot of patients are also on more than one type of med eg a 5-ASA and an immunesuppressant.

3). I honestly couldn't say if the Pentasa is making any difference at all at this point :-/ I can say that it's not uncommon to have a flare-up while on maintenance meds, unfortunately. The idea of them is that they delay the rate and severity at which flare-ups happen, but they won't stop flare-ups from happening full-stop: you'd have a cure in effect for Crohn's if they were that predictable. On another note, some folks have remissions for 20 years while others never go into remission: in between are the vast majority who have regular remissions and flare ups, each lasting anything from a few days, weeks, months or years.

4). Don't. It took me 10 years to learn that. Doctors will not pick up on the subtle hints that you are not doing well: you have to spell it out for them.

5). Phew, this one isn't a question >_>
Posted 10/20/2011 11:24 PM (GMT -5)
Wow...thanks for all the answers/suggestions. Increasing the Pentasa dose does make some sense since it seemed to be working so well for a long period of time. I just started the Prednisone today, so hopefully that will kick in and help too. Thanks for all of the support too. After knowing what it's like to feel well, I am quickly losing my patience with feeling so ill! I'm going to visit my daughter at college this week-end and I hope to make it through ok. Take care and thanks again
Posted 10/21/2011 11:47 AM (GMT -5)
I was on Pentasa for eight years with very minor flare ups. Then one day, bam! It just stopped working. No rhyme or reason for it. Unfortunately, this DD can decide to rear its ugly head whenever it wishes. Even when we are doing everything right. I'm sorry that you are having such a rough time and hope you feel better soon.  Good luck!
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