Newbie advice

Well firstly hello

Im from the UK and caught Amoebaisis (Ive always worked overseas) some time leading up to 2011. This turned into amoebic dysentery which later revealed UC.

I ended up having to take three doses of infliximab to stop the flare which was like throwing a light switch. I was then prescribed 6mp which I took for around a year. I stopped this and had slight grumbling after drinking, heavy curry etc but nothing major. Never really looked after myself diet wise but always kept fit (Gym and sports). I would get regular mouth ulcers which I believe shows issues with UC.

Any three weeks ago I starting getting a lot of blood etc. Im in Saudi just now so went to doctor. They took stool, blood and urine. Stool had no signs of parasites and blood showing high white cells so advised have a colonoscopy.

After colonoscopy was given Pentasa 3g /day and Cipromax 1g / day. This seemed to calm things down.

By 5th day I started getting chest pains running into my left arm, pain in left side of neck and sore throat. It was so bad that I went to emergency and gave stool,blood and urine. Results showed that I have amoebasis (E. Histoliyca) again!!.

Went back to Doctor he said not to worry!... I stopped the cipromax as its nasty to see if that was causing problem but it got worse. They I read rare side effect of pentasa so stopped that and after 3-4 days my chest pains have gone.

Went back to doctor he offered little help and Im now on M
Metronidazole and diloxanide furoate for the amoebae which is correct. (had to source this myself)

Issue is my bowel is defo worse without the pentasa. Obviously pentasa starts releasing through the entire gut but my area of concern is slight ascending, moderate transverse and moderate descending and smigmoid colon.

Steroids are not an option until im 100% sure that the amoebae are gone as this could be fatal. Doctor available to me seems to know less than I do which is a worry. I can get all maintenance meds 5 ASA without a prescription here.

Q. Is it possible that if I have another 5 ASA that released further down in the area of concern that I would not experience the same side effects with the differences in input into the body the small and large intestine has?

Q. Can anyone give advice on what would be an alternative.

Im taking high doses of omega 3 at the moment also.

Any advice would be greatly appreciated as the doctors are not very much help.

Thanks for looking
Colin

I wanted to see if the diagnosis was correct as having amoebasis in the mix it's unclear. Many papers on this.
Amoebasis can lay dormant in some cases and is very hard to detect.

So I basically went 4 years with no symptoms and saved my body from 4 years worth of 6mp.

I'm still not convinced UC is correct but having celebration from amoebae will still get results from an antiinflam drug.
Not having the medical support here it's difficult. My previous signs of ulcers etc could be induced from long term invasive amoebae.

Can any provide insight into my two questions thanks.

Col

Post Edited (Colin linky) : 3/3/2017 12:08:20 AM (GMT-7)

You can check our signatures to see what individually works for us. Many here can maintain remission with an oral mesalamine and a rectal mesalamine such as Rowasa. Some doctors believe that enemas only work the very bottom of the colon but that is where most inflammation begins. Those who have used them find that it soothes most of the colon with very few side effects.

My signature shows supplements that have worked for me, but more important in my case is avoiding the food triggers. The usual suspects are gluten and dairy but any food can be a problem.

IamCurious said...
You can check our signatures to see what individually works for us. Many here can maintain remission with an oral mesalamine and a rectal mesalamine such as Rowasa. Some doctors believe that enemas only work the very bottom of the colon but that is where most inflammation begins. Those who have used them find that it soothes most of the colon with very few side effects.

My signature shows supplements that have worked for me, but more important in my case is avoiding the food triggers. The usual suspects are gluten and dairy but any food can be a problem.

Thanks for the heads up and the information.

I should really keep a food diary as it seems to be a large variant on people say works and does not. I guess the body and especially the gut (Relatively unknown) is a highly complex machine and hence 'highly complex'!

Once I get over the amobasis I will try some more mesalamine that releases further down and see if that still causes the chest pains, muscle aches, sore throat etc.

thanks for your input
Col

Or it could be an allergic reaction to the chemical coating or the inactive ingredients, all of which are different in different brands.

A mesalamine allergy is very different, a dramatic worsening of symptoms like going from 2 solid bms a day to 8 very loose and very urgent bms.

You'd probably have to back on 6MP if the mesalamines are causing unbearable side effects. We're no replacement for a doctor, so I'd see a gasteroenterologist and describe what you've experienced.

Sucks on access to a doctor.

The only other thing you could try in the anti-inflammatory mesalamine class is an older delayed-release coating free med like balsalazide disodium or Dipentum/Olsalazine. However they do contain mesalamine just like asacol does. The only point would be saying it's the delayed-release coating causing issues and let's try it without it.

The only worry about the pains from asacol is that it could be heart inflammationn you could get tests to confirm.

6mp isn't worse than occasional flares. You're much better to be in a deep remission for 5+ years as your colorectal cancer odds are lowest then. When we're barely holding on with simmering inflammation our odds of flaring are the highest, as are our colorectal cancer odds, as are the odds of our UC spreading and becoming a much more severe case (e.g. pancolitis). I understand the fears 6mp gives regarding lymphoma but they are incredibly small odds of 4 in 10,000 (or 0.04 percent) as opposed to 2 in 10,000 for the general population. Adolescent males are more risk, if your demographics match that. Of those who get lymphoma, 66 percent are able to put it in remission.