New to Crohn's

Hi Everyone, I just recently got diagnosed with Crohn's disease and discovered this forum. After doing much reading here and seeing the pain and stress this disease can cause I have a couple of question that I am almost embarrassed to ask because they are so minor but here it is.
Just a brief history first. I initially saw my doctor for a unexplained weight loss of 25 lbs. went from 195 to 170 in about a month, pretty much loss my appetite but no other problems. Doctor did blood test and everything was fine, then sent to a specialist for a colonoscopy and specialist said he "thought" I had Crohn's disease but needed a endoscopy. Had that performed and was told I had Crohns but needed a CT scan to verify it. Had that completed and was told that I definitely had Crohn's. The doctor (specialist) then said I was the must unusual case he had ever seen in that the only symptoms I have is weight loss, loss of appetite, and a little fatigue. No stomach cramps no diarrhea, no nothing. For that I feel extremely fortunate!
So here are my questions.

1. Has anyone else on the forum been diagnosed with Crohn's with the only symptoms being weight loss and loss of appetite? I assume that eventually I will get more symptoms right?
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2. I am supposed to take six 400mg pills of Acacol per day but after reading all of the possible side effects of that drug I am wondering why I would expose myself to that when I feel fine right now. When you have Crohn's do you take medicine even when you are feeling good? I did ask the doctor that question and he just told me I should take the pills. He definitely is not a people person and does not like to talk things over, in fact when he told me I had Crohn's he did not even tell me what to expect or what to do or not do, just here are the pills and see you in six months. He is the only specialist in the area so I have no one else to go to. So any help here would be greatly appreciated.

Thanks

Dale

Welcome to Healing Well, Dale! I'm sorry that you have had problems lately and learned that it is Crohn's. However, please don't think you are in for a lifetime of problems from what you have read on this forum. Most people here are those having the worse aspects of the disease or like to help others because they are long time members. We have lots of members come initially for advice, then find the right treatment for them, and go about living an active, normal life.

Losing 25 pounds in one month is a sign that there is something wrong. It's most likely your Crohn's is in the terminal ileum where nutrients are absorbed from digested food. That is why you are losing weight. I would venture a guess that while you don't have diarrhea, prior to this you tended to be a bit on the constipated side and now are "less" constipated.

The reason you need to be on a medication is you will continue to lose weight and become malnourished if the inflamed area is not treated. That could lead to an entirely different set of problems. It the bowel becomes so inflamed and suffers lots of damage it can form scar tissue. Then the scar tissue constricts the width of the bowel and can cause an obstruction. At best your diet becomes very limited, or at worse, the stricture becomes so small you need to have surgery and removed the damaged portion.

Asacol is really a topical medication. It treats the mucosa [lining] of the bowel. Very little, it any of it is absorbed into the blood stream. Some people do have problems with it, but very few. If I named some of the medications I take or others take, and you read the side effects, it would blow your mind. Someday, go read the side effects listed for Tylenol. They are as bad, if not worse than the Asacol.

I hope this explains a bit and answers your questions. Please feel free to ask away in the future. And again welcome to Healing Well!
Ides

asacol only works in the colon, if you have disease in your small intestine/terminal ileum pentasa would be a better drug to use

I agree with the above advice about getting on a steady med for maintenance. The area where your digestive system is inflamed helps to determine which medication is ideal.

Many veterans of this disease also find that diet, (such as the SCD mentioned above), and lifestyle changes seem to help. Here is last year's thread entitled "Thoughts on GLUTEN FREE / NATURAL AIDES to help Crohn's" that you may find interesting:

www.healingwell.com/community/default.aspx?f=17&m=2485310

A better choice would be Pentasa, which is active in both the small and large intestine.

My GI started me on Asacol first, too, but I was having diarrhea and two years later (!!!) I still had diarrhea. A couple of weeks on Pentasa resolved that problem. Since you are not having diarrhea you might not notice a difference btwn the two meds, but the small intestine is responsible for most of your nutritional absorption; it is important to treat that part of your inflammation.

Another choice would be to take entocort, which is a corticosteroid. This drug is specifically designed to treat inflammation just like yours. about 80% of Crohn's patients have inflammation in the terminal ileum (the last part of the small bowel) so this drug is widely used in Crohn's treatment. It is something you use for 3-6 months, and then taper off and maintain your remission with meds like Pentasa.

The oral mesalamines (Pentasa, Asacol and others) have very few side effects, although some people cannot tolerate them. Pentasa, since is is active in the small bowel, may have more side effects than the others (the colon absorbs very little except water). I used Pentasa for many years but ultimately had to stop because I got tinnitus (one of the more common side effects of Pentasa, but still relatively uncommon).

Welcome again, and keep us informed about how you're doing.

I will ask about the B-12, folate and vitamin D on my next doctor's visit.

Thank you all for the info!