Treatment only using a 5 ASA drug?

[Mom2oneboy]

I posted this on the Parent Forum but wanted to ask the question here as well.

Are any of you able to control your Crohn's by using only 5 ASA drugs? My son is 10 and has just been diagnosed with Crohn's in his terminal ileum. His only symptoms have been a perianal abscess, occasional slight discomfort on the right side, and slightly low iron and protein. He feels good, lots of energy, has only missed school to have the abscess drained. He's currently on Entocort to get the inflamation down and his doctor is recommending Aza as the next step of treatment. The potential side affects of this are worrisome. I'd rather go with something with less risk.

Am I crazy to think we might be able to control this with a lower risk approach of a 5 ASA drug and diet? I would love to hear your thoughts on this.

Thanks,
Shelley

 

[SarahD]

I was put on Asacol shortly after being diagnosed at the age of 13, though at that time my inflammation was mainly in my large intestines (it's now moved to my terminal ileum). I was on prednisolone at the time as well, but that was to bring the inflammation down and the Asacol was to maintain remission. After a couple of years the Asacol wasn't working very well for me so they switched me to Pentasa and I spent about 8 years on that with a few flare ups each year but generally being healthy. So in answer to your question, 5-ASA's can be used to control Crohns, though I think Aza has advantages for people who have abscesses and/or fistulas.

Have you discussed this with your sons doctor? I feel the same way about the risks associated with Aza as my dr has suggested it as the next thing for me to try since the Pentasa is no longer keeping me in remission (I'm now 24, so the 5-ASA's helped for 10 years or so, with the occasional course of steroids), and if I had a choice I'd choose 5-ASA's if they were doing a good enough job at controlling my symptoms. It may be worth trying it first - though everyone is different and there may be a very good reason why the dr is recommending aza rather than one of the 5-ASA's. It is always worth asking though, the worst they can say is no!

Good luck!

Sarah

 

[Mom2oneboy]

Thank you so much for the feedback Sarah! My son has a smal bowel follow through on Monday and then we meet with the doctor after that for further discussion on a drug plan. I would sure love to start with one of the smaller drugs first but we will see what the scan on Monday shows.

Shelley

 

[Catherine]

Hi Shelley, my daughter treatment plan currently is pred and Aza. The GI current plan is to get her into remission using there drugs and step down to 5 ASA drug.

 

[Samboi]

Up until a stress induced flare last year, my CD was very well controlled with 5 ASA medication.
Remiss of my to forget the timeframe - it was well controlled for ten years.

 

[Land]

I'm trying to get information on the various meds used to treat CD. I'm hoping someone can give me some advice on the best treatment route for my son. Here's his story...

He was diagnosed with Crohn's about a year ago (16 years old)- primarily in the small intestine. His initial symptoms were mild diarrhea, fatigue, slight anemia, weight loss, and some stomach cramps. Initial treatment was the usual steroids, which seemed to put him in remission. He was then placed on Pentasa, which he took (reluctantly because of the size) for about 6 months. He then went through a phase of severe depression and stopped taking the Pentasa altogether. He's had no real GI issues in the past 6 months, only fatigue and could stand to gain more weight. He just had a follow-up colonoscopy; the results indicated there is still inflammation although his labs are WNL. He's attempted to take the Pentasa again at our insistence, but now is unable to swallow them. He gags and has to spit them out.
So here's the problem. His dr wants to start him on 6 MP as he believes this would be easier to swallow. I am really against this medication for fear of the side effects. Can anyone offer any suggestions? Can you open the Pentasa (i've heard different opinions)? Any advice would be greatly appreciated!

 

[SarahD]

Land, I too have trouble swallowing the Pentasa tablets, they are horrible as they start to disperse in your mouth the second they get moist. What drink is your son using to swallow them with? I find water is the hardest but have had luck using fresh orange juice - I think because it's thicker in consistency. It's also best to just swallow them as quickly as possible, which is really hard when you're nervous and they make you gag. I must admit I still gag 80% of the time when swallowing Pentasa and I've been taking it for years.

There are also 1g and 500mg tablets, so if your son is taking the 1g ones they are larger, so it might help to switch to the smaller ones, but taking twice as many? It's also possible to disperse the tablets in a glass of water, but personally I don't like to do this because they don't completely dissolve and you end up drinking something with lots of little chalky bits in it.

Would the doctor consider switching your son to Asacol? It's a similar formulation to Pentasa and is coated, so much easier to swollow. It does release slightly differently to Pentasa so I'm not sure how well suited it would be for Crohns in the terminal ileum, but it might be worth a mention next time you see the doctor. Good luck!

 

[DustyKat]

Hi Land and :welcome:

I'm so sorry to hear about your son and the problems he is having.

Both of my children take the parent drug to 6MP, Azathioprine. They have not had any issues with side effects but I do understand your reluctance to commence these drugs. I have no experience with Pentasa but it is the preferred 5ASA for small bowel disease.

Due to the location of your son's disease has he had blood drawn for B12, Iron Stores, Folate and Vitamin D levels? He may well have issues with malabsorption that are contributing to his fatigue and depression.

You may also like to look into Enteral Nutrition (EN) and LDN as another type of treatment. EN is as effective as steroids, particularly in children, in inducing remission and there are other parent's here that can give you excellent advice about it. These are the links to the forums...

Enteral Nutrition

Low Dose Naltrexone

Parent's Forum

The Diet, Fitness and Supplement Forum is a good read and has loads of info.

Here is a link to an article about how to swallow pills, might be worth a read...

http://research4kids.ucalgary.ca/pillswallowing

I hope your boy is soon able to find a treatment he is comfortable with and that has him feeling better both physically and psychologically. This time last year my own son was starting to struggle with the disease and what it was doing to him. It is so heartbreaking to see and know you can't take it away from them and make it your own.

Dusty. xxx

 

[Land]

Thanks, SarahD and Dusty, for your suggestions and advice. I am going to talk with his dr next week about the blood work you suggested as well the medication issue. I also wanted to thank you, Dusty, for the link to the article about swallowing pills! I've not had any luck getting him to watch the video yet, but I'm hoping after the dr visit, he'll realize he needs to get over his fear of swallowing the pills and watch the video

 

[nogutsnoglory]

I had a surgery a few months ago and don't want to be on the immunosuppressirs. I'm considering one Of these as sole maintenance.