Medications --- Please give me your advice.

Well Meowese I am this biggest proponent of maintenance meds at all times. I did have a nearly 20 year remission med free. Would I do it again? Heck, NO!! Why??? Because my remission ended with me needing emergency surgery due to a complete obstruction and then having to have another only 3 years later. Plus it also took me forever to get my disease back under control.

If you want to stay on lighter meds, then I suggest you take the Pentasa. Before my surgeries my Crohns was limited to the TI/Cecum area. The most common place. I currently am maintained with Asacol the sister med to Pentasa. You need to remember that Crohns is a chronic and incurable disease, and even when feeling well the disease continues to do its damage on a microscopic level without you even knowing it. So please do get back on some kind of med asap. I would hate to have you suffer like I did. Hugs!

Asacol - "The inner coat consists of an acrylic based resin, Eudragit S, which
dissolves at pH 7 or greater, releasing mesalamine in the terminal ileum and beyond for topical antiinflammatory
action in the colon."

Pentasa - "Each tablet has a special plastic coating which delays release of mesalamine until the tablets reach the end of the 20 feet of small intestine, or the ileum. This allows delivery of most of the medicine right where the problem lies - the ileum and right colon"

I'm with Nanners, get on a maint. med. I would also give the Entocort a try, it's only for short term anyway and will reduce the immflamation.

I felt good and stopped the meds and I was told that I had a very mild case of Crohns. The next thing I know I'm in the hospital with an obstruction and told that my stricture was scar tissue and that I needed surgery. I had the surgery and did not want to go on Immuran and just stayed on Asacol. 9 months later the Crohns was back. Finally agreed to listen to the Doctor and started Humira. I have been on Humira almost a year now and just had a scope yesterday and was told my insides are healed.

I went from Mild to Severe from not taking meds. I went from Severe to Mild taking my meds.

I should have listened in the first place.....

Post Edited (Wolfie40) : 10/19/2010 6:20:14 PM (GMT-6)

Unfortunately, I ended up in the hospital once before with a partial blockage (hence why I was on Pred in the past), despite my condition being mild. It came out of NOWHERE. Thankfuly, no surgery necessary. I was also on Pentasa at the time, which lead me to think it was a waste of time perhaps. However, maybe I should stop being so negative and give it another chance, and if I don't feel better then give the Endocort a chance too (short term). I just get in a frustrated rut sometimes where I don't like ANY of my options. Sometimes I feel like I'm poisoning myself with medications and reading the symptoms online gives me major anxiety. Having you guys to talk to about it is definitely helpful, so thank you.

NiceCupOfTea said...
Oh, right.

I don't really know what to say about obstructions which come out of nowhere. I'm beginning to think I'm the only person who's never had one!

You say this as if you feel left out or something. :p

I didn't have any negative side effects from Entocort during the 9 months I was on it.

Finding a med that can get you into remission will help prevent or at least lessen permanent damage.

Hi Meowese,

A colonoscopy will not tell you or your doctor how badly your small intestines are inflamed. Are you having any other tests done like a small bowel follow through or MRI or pill cam? Just wondering.

Pentasa is a very mild drug. It has been shown to help maintain remission and reduce the risk of colon cancer in people with CD. It is not real good for getting you into remission though.

It's a form of aspirin (5-ASA) in a capsule that dissolves and releases the aspirin so it coats the inside of your intestine. It's a bit like spreading a salve with aspirin in it on your body - it works topically rather than systemically. There are several different formulations of the 5-ASA's each designed to be released in different ways or different parts of the intestines.

Entocort is a corticosteroid that is similar to Pentasa in the sense that it is also released from a capsule that is meant to dissolve at a certain point in your intestines - the TI.

Entocort is different from prednisone in a couple ways. It mostly works on the surface - like Pentasa - rather than systemically like prednisone. Entocort is a lower dose of steroid and only 12 - 25% of it is absorbed into your system. So, you may have some of the same side effects as with prednisone but they are likely to be milder. You don't want to take it for a long time because it will affect your bone health but it is used a lot for shorter term (9 weeks to a year) treatment of mild flares in the TI since it is targeted to that area.

Meowese said...
If I refuse the medication, will my disease continue to get worse over time? As in, if left untreated, will my Crohn's get progressively worse. I know there's no way to know for sure, but isn't it possible that I can go into remission without treatment? Could I just "learn to live" with the flares?

Typically the damage done by the inflammation gets worse over time. Leaving the CD to "cycle" means that you are letting parts of your intestines get inflamed over and over and then waiting for it to get better on it's own each time.

Every cycle you risk permanent damage to your intestines in the form of scar tissue. The scar tissue can build up and form strictures or narrowing of the intestine and that can lead to the type of obstruction that usually requires surgical resection. The degree of damage will vary so it's not possible to predict if or when you might get this complication. You are also risking getting infections (abscess) and fistulas that can form when your intestines are inflamed for a long time.

Meowese said...
What other medications should I look into? The doctor gave me the impression that after Pentasa, Endocort is the next "step up," and that drugs like Humira or Remicade and stuff were harsher.

Entocort is a step up in that it is more effective than Pentasa when you need to get back into remission. It is a step up in that it has more side effects but those are generally quite mild. Pentasa can be used for long periods safely. Entocort is meant to be used for shorter periods - to suppress inflammation rather than heal the intestines.

I wouldn't describe Humira, Remicade or 6-MP and Methotrexate as harsher. (I would definitely use that word to describe prednisone.) They are more powerful and affect your entire body - not just your intestines. They carry the risk of more significant side effects and require ongoing monitoring to be used safely but do not automatically cause you to have side effects that are dangerous. These meds are essential for many CDers - to induce remission and to maintain remission.

Other treatment options you may want to consider and talk with your doctor about include

1. In addition to continuing Pentasa, do a short period of exclusive enteral nutrition (liquid formula) of a month or so to calm the inflammation down without meds. This can be as effective as oral prednisone in stopping a flare but isn't widely offered here in the food-obsessed US.

2. Starting on an immune-modulator like 6-MP as a long term maintenance medication on top of the Pentasa and Entocort. 6-MP takes up to 4 months to have an effect so you would wean off the Entocort after several weeks and see if the 6-MP was working. Then you would continue on Pentasa and 6-MP.

Like Prednisone, Entocort will suppress the inflammation but doesn't appear to help your intestines actually heal at the mucosal level. When you stop the Entocort, the inflammation may stay suppressed - or it may not. The Pentasa may be enough to keep it down once you stop but it's not a very strong medicine so it is unlikely to keep you remission if you get more than a very mild flare.

Immune-modulators like 6-MP and biologics like Humira have been shown to promote intestinal healing. Then they help keep your intestines that way when you continue to take them long term.

6-MP has been used safely for very long periods of time (20+ years) by some people - with proper monitoring of course. In the past it was thought that 6-MP might increase your risk of certain cancers. But recent research has found that there is actually no increased risk of developing cancer when you take this medication long term.

I'm not recommending these meds - just describing the typical treatment options for you.

Meowese said...
Knowing whether leaving active Crohn's untreated is more harmful than the medication itself will probably be a huge factor in whether I take the Entocort. But so far I have found Crohn's to be very unpredictable...

I think of it this way. CD is like having an arm that goes through unpredictable periods of being swollen, red, hot and tender. There are usually open sores that sometimes bleed or get infected. If it gets bad enough part of my arm might have to be operated on - even removed. When the swelling finally does go down there are big scars where the ulcers were the worst.

Well that's what's happening in your intestines when you flare. You can't see it but that doesn't mean it's not happening. I suspect that if you could see it you would almost certainly do something to try to heal it and then keep it from getting like that again.

If I had an arm like that would I wait for it to get better on it's own? Probably not. If I knew that taking a medicine long term meant that there was a good chance my arm wouldn't get that like again for a very long time - would I take that medicine? Probably.

If I knew that drinking formula and not eating regular food for a few weeks would heal my arm when it started getting bad I might think about doing that if I was worried about taking medicine.

You may continue to have very mild Crohn's that doesn't need anything more powerful than Pentasa with a little Entocort to stop mild flares. No one can know for sure. Statistically, I can tell you that an estimated 75% of adult CDer's will have surgery within 10 years of diagnosis and 80% of CDers will have surgery in their lifetime.

Best wishes - hope you get feeling better soon.