Question about treatment

[ncguy4]

I was recently diagnosed in June of Crohn's and am now on prednisone for ileum inflammation. I have very mild (apthous) ulceration in my ileum too.

My story does not seem to be as "severe" as other's from what I've read, but I wanted to see if maybe I'm just in denial.

I think my first attack was around 10 years ago. I only have them every year to two years and remain completely asymptomatic after each attack.

When I say "attack" I guess that is a flare-up, but mine start out as indigestion that slowly progresses over a few hours to methane-smelling burps, abdominal discomfort, and then after a few mores hours I'm in excruciating pain. Diarrhea, vomiting, HORRIBLE abdominal pain, and then after a night of hell, it goes away. I've gone to the ER three separate occasions, and finally the last one I was admitted and that's when (after a few weeks of tests) I was diagnosed.

Now there is talk of putting me on Remicade and 6-MP, but I'm only 24 and don't want to go on it if I don't have to. That's a long time to be on a medicine (assuming I'm on it for life) especially with the risk of lymphoma, etc.

My question is: do my attacks and the timing between them justify in your minds such a strong treatment?

I have researched the SCD, but honestly don't know if it's worth the time. I don't even know if the diet or medicine would help me at all. They both might be overkill, seeing as my attacks are so far from eachother.

I'm just really new to the Crohn's thing and don't know anyone personally who has it. I have heard of people with constant problems, and always having diarrhea, etc. But I didn't have that.

Any advice?

 

[teeny5]

Are they putting you on it because the prednisone isn't working? They key with the disease is trying to get the inflammation to go down. Until then I don't know that a special diet will do much. Once inflammation is down, then you can hopefully control it with diet and milder meds. You don't want the inflammation to get out of hand cuz that could land you in surgery.

Some of your symptoms might be gone, but you may still be inflammed inside. I would get the doctors to go over everything with you. My GI showed me on a chart where all the inflammation is and what it means.

I just recently had my symptoms wane a bit due to being on Entocort. Before that I only had mild diarrhea, painful cramping, inability to eat, exhaustion, muscle/joint pain, night sweats, difficulty sleeping...all even when I was eating only a liquid diet. My attacks at that time were for about a week every two weeks that I would be like walking death...couldn't function at all hardly, was just trying to make it through each day.

 

[ncguy4]

The prednisone is working. THe reason I was put on it was because I went to see my GI a few months after my diagnosis b/c I was feeling a lot of discomfort. He pressed on my lower right side and it was not the best of feelings. So, I'm still on the prednisone, and he was talking about putting me on the remicade/6-MP soon afterwards. He said Asacol wouldn't work on me. I'm not sure why, but that's what he said.

Perhaps I am inflammed between attacks...I can't really tell. I have no symptoms between attacks. It just comes on suddenly and lasts a day. Then it's gone for another year or so. 1 sucky day out of 365+. The attacks are not something I ever want to relive, but my GI doc said the attacks most likely come from an obstruction from inflammation.

So...to take meds...or not? To go on an extremely restrictive diet...or not? If these options don't cure me, and there is still a chance of attacks...and my case isn't too bad, what is the smart choice?

 

[RHOV]

Remicade has worked wonders for me so far. I feel better within a day or two after each infusion. I took Imuran, which is similar to 6-MP, for a while, but it didn't work for me. Everyone responds to drugs differently, so you may have to try out a few meds before you find the right combo and dosage that works for you. Personally, I believe in the drugs, but if you don't want to be taking medication for the rest of your life, you could look into some natural remedies once your disease is under control.

As for the SCD, some swear by it, and some think it's completely nuts. There's no harm in trying it out though! The hardest part of the SCD is the willpower it takes to follow it.

 

[pb4]

The way your disease is behaving may just be the way you're wired...everyone varies with symptoms and such, it's a very individualistic disease...if you don't feel that you need such assertive treatment that your GI does then try some alternative meds, natural anti-inflammatories, altering your diet, taking probiotics and fibre supplements daily and indefinitely, exercising regularly, drinking lots of water...it could be a simple as implementing these things into your routine that keeps you from having any attacks...you won't know until you try...and these are likely much safer routes to go than the big guns like remi.

 

[Mazen]

I think your doctor said Asacol doesn't work is because it targets the Large intestine. Try asking him about Pentasa which also targets the terminal ileum (like my case). If it works for you it's better then progreesing to the harsher meds... I have mainly symptoms like you and stayed on Pentasa for almost four yearss. I'm still taking it now but with Imuran after having a major obstruction, which i can only take at low dose (50 mg) as it caused liver toxicity and it doesn't seem to be doing much.... My doctor is also suggesting Remicade now, but I'm trying to see if I can feel better with diet (low residue) and natural anti-inflammatory supplements like: Fish oil, a multivit, Bee Propolis, Turmeric., Green Tea, Cammomile Tea... and try to avoid sugar, high fiber foods, processed foods, etc.....

I tried SCD for a week, but it was so hard to follow, and made me feel very weak. But if you can pull it of, it's worth a shot