Rapid Weight Loss

[charlottem]

Hi everyone

I am on budesonide 9mg and have been on budesonide since beginning of september and it was working like a miracle- put on weight, felt much better, calprotectin halved etc etc. my specialist said we will wait till june and then think about progressing onto azathioprine.

anyway I had my tube changed last week and they weighed me and I have lost 6kg since december... I am now 39kg and my BMI is 15 which is pretty horrendous and I am at a total loss because I know I am not flaring as my HB is really good and also I am not really getting much pain and I feel good within myself! I do have severe dysmotility and they are thinking maybe I have a pancreatic insufficiency but I just wondered does this sound like the budesonide is becoming less effective now ive been on it a while?

I have an appointment tomorrow to hopefully discuss what to do with my local consultant who is AMAZING and then I will probably book in to see my specialist because my dietician said no way can this wait till June otherwise my weight will be way too low

 

[ronroush7]

Hi. I wonder if you want to tru a nutrition shake like Ensure complete to put on weight.?

 

[charlottem]

Hi. I wonder if you want to tru a nutrition shake like Ensure complete to put on weight.?

hi!!!

I'm on a feeding tube at the moment into the jejunum and I am 100% fed by it with the elemental as any other formula sets me off into a flare!

thanks though x

 

[ronroush7]

Hope you can get some answers soon.

 

[Maya142]

Have you talked to your dietician about calories? If you are getting all your nutrition through formula, you may just need additional calories. How many calories are you getting now?

My daughter was put on NJ and then J tube feeds because she was severely underweight and had Gastroparesis in addition to Crohn's. She needed 2400 calories to gain weight. She was about your weight - she was 37 kg at her lowest weight and she is 5'2. Her BMI was also about 15.

We did not realize how serious that was until we were told that if she lost more weight, her organs could start shutting down. She developed an arrhythmia just from being underweight.

In the beginning, she was on feeds for 18 hours a day, sometimes more. She got most of her calories from an elemental formula (Neocate Splash) and some from food. Her dietician was shocked at how many calories she needed to gain weight - we had estimated about 2000 at most, not 2400-2500!

I would check with your GI and figure out what is going on and whether your calories need to be increased. I would also ask for blood work/Fecal Calprotectin to make sure your IBD is actually in remission. Entocort (Budesonide) may not be enough for you.

Generally Entocort is started at the same time as Azathioprine/Imuran because Imuran can take 3 months to be effective. So the steroids induce remission and Imuran maintains it.

 

[charlottem]

Have you talked to your dietician about calories? If you are getting all your nutrition through formula, you may just need additional calories. How many calories are you getting now?

My daughter was put on NJ and then J tube feeds because she was severely underweight and had Gastroparesis in addition to Crohn's. She needed 2400 calories to gain weight. She was about your weight - she was 37 kg at her lowest weight and she is 5'2. Her BMI was also about 15.

We did not realize how serious that was until we were told that if she lost more weight, her organs could start shutting down. She developed an arrhythmia just from being underweight.

In the beginning, she was on feeds for 18 hours a day, sometimes more. She got most of her calories from an elemental formula (Neocate Splash) and some from food. Her dietician was shocked at how many calories she needed to gain weight - we had estimated about 2000 at most, not 2400-2500!

I would check with your GI and figure out what is going on and whether your calories need to be increased. I would also ask for blood work/Fecal Calprotectin to make sure your IBD is actually in remission. Entocort (Budesonide) may not be enough for you.

Generally Entocort is started at the same time as Azathioprine/Imuran because Imuran can take 3 months to be effective. So the steroids induce remission and Imuran maintains it.

I defo need more calories as only getting about 1500 at the moment... theres talks about a straight J tube rather than a GJ which could improve tolerance but they want to wait till after my exams

Yes im really worried about the side effects of loosing so much weight

I will defo be speaking to my GI- I have an appointment with my local tonight and then I'll probably see my specialist next week and try and get a plan in place because I think we need to add aza in now really.... maybe the budesonide is just not as effective as it first was