Losing weight

[sam101]

Hello,

My brother is diagnosed with Crohn's disease for almost 3 years now. It's not like he was well before that. Before that, his diagnose was irritable bowel syndrome. 3 years ago he went for a full medical treatment and the new diagnose was Chron. His condition was rather OK for two years, but in the last year he is constantly losing weight. He did have good and bad periods. Bu the lost in weight is constant. Over time he has dropped from 75 kg to 67 kg. He is weighing himself almost every day. And one day he has 68 kg, then the next day, without any mayor reason (diarrhoea or something else) he drops to 67, and so back and forth. Although is more back then forth :frown: Needless to say he is worried. His MD that is leading him in the hospital (his gastroenterologist) can’t say anything and is pushing for a new “deep” medical examination (colonoscopy and so on), although his other tests are OK (there is no inflammation). My brother is reluctant to undertake all the examinations because it took him quite a while since he recovered from the last ones.
Does anyone have similar problems, or can anyone point me in some direction other then examinations, examinations…

 

[Jmrogers4]

My son has the same problems, would he be willing to supplement or even do exclusive entrenal nutrition? You can use Ensure, Boost or something similar. The further broken down the formula the easier to absorb, the GI can prescribe formulas.
Unfortunately as we have found out inflammation can be present even with normal bloodwork. My son's labs have always been in the normal range but an MRE showed inflammation throughout his small intestine. Once we able to get that under control through the use of remicade he started to gain weight.
What medication is he on?

 

[sam101]

He is using Ensure, basciclly daily. He is also taking some other thing, prescribed by his GI but I can't remember the name. He was taking budosan for a mont in June, and now is on pentasa.

 

[Jmrogers4]

My son at 14 was prescribed 6 shakes a day alongside whatever food he would eat when we used shakes to gain weight and 8-9 as exclusive enteral nutrition in order to reduce inflammation.
Pentasa is generally not strong enough to bring about remission. A GI once said it is like giving aspirin to cure a brain tumor

 

[shamrock15]

Given that pentasa is essentially aspirin, that is a good analogy. It never did a thing for me. Weighing daily probably isn't the best idea - maybe twice weekly. Everyone has fluctuations and it can be difficult to determine exactly what is causing them. In general though, it boils down to not absorbing enough calories to maintain or increase weight. I had this difficulty for 20+ years. Get the tests done. Skip the introductory medications. You already know they don't work. Make the doc justify his choice of meds and why he isn't going for something like remicade. Ask for a concrete timeline for escalation otherwise and hold him to it. Good luck!

 

[ronroush7]

Given that pentasa is essentially aspirin, that is a good analogy. It never did a thing for me. Weighing daily probably isn't the best idea - maybe twice weekly. Everyone has fluctuations and it can be difficult to determine exactly what is causing them. In general though, it boils down to not absorbing enough calories to maintain or increase weight. I had this difficulty for 20+ years. Get the tests done. Skip the introductory medications. You already know they don't work. Make the doc justify his choice of meds and why he isn't going for something like remicade. Ask for a concrete timeline for escalation otherwise and hold him to it. Good luck!

You say that Pentasa is essentially aspirin. I was on Pentasa at one time but my doctor told me to never take aspirin because it can cause bleeding?

2

 

[Jmrogers4]

Ron didn't mean it was aspirin just using a comparison. It's a sulfasine based med so functions like tylenol but released it the intestines is my understanding.

 

[ronroush7]

OK, my eyes caught onto the part about aspirin. Didn't read the rest.