Overweight with crohns?

Hi, i am a 13 year old female that was diagnosed with crohns disease in December of last year. My problem stared in January 2 years ago with lower right side abdominal pain after several trips to the er we managed to rule out almost everything. They tested me for celiac and about 2 weeks later a nurse called saying the test was positive but when I went to a gastronology doctor he said it was negative. I then was sent (still with no answers) to an gynocologist who found nothing and sent me to a chronic pain clinc. The pain clinc told me I could have a damaged nerve and I could get a nerve block and see if it works. The nerve block helped and I thought I had found the problem. I would go to the clinc when the nerve block wore off and book a new one. But durning my check up with the gastro doctor he told me he wanted to proceeded and send me for scopes before he signed off on me. I went for the scopes and a piece of the biopsy they took from me was positive for chrons. He said everything looked great but the biopsy was still positive. To see if maybe I did have crohns he put me on an enteral therapy diet to see if the unexplained inflammation I always had in my blood work went away. After 6 weeks of only boost and water it did.


Now that you know the basics here is my question: I am gaining weight very rapidly and not vomiting but feeling sick with other little symptoms of crohns. I also have never had a flare up extremely bad because they stumbled upon my disease. If I lose weight and become a healthy size again will I get a bad flare up?

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Overweight with crohns? NEW
by: Lydia

1/2

My pleasure.

I am sorry to hear that the doctors are making you feel bad. I understand where you are at because I have been treated like that too. A lot of doctors are good on the theory but totally ignorant when it comes to the practice. They just don't understand how incredibly awful one feels with this disease.

Unfortunately, it is not only the doctors. Friends and family have the knack of bringing one down too. There is this general idea that if you get sick, you just take medicine and then get better. This just does not happen with Crohn's disease and healthy people cannot get to grips with this at all. It is a lonely disease and one can get very isolated and appear to others to be totally antisocial.

I suggest that you print the following out and leave it casually lying around at home for all to read. If you leave it with personal papers that will guarantee that it is read.
What is Crohn's Disease?
http://www.crohns.org/congress/submission01/appiv.htm

I suggest that you keep a food/mood/symptom/medication diary. If you keep paper/a small notebook and pencil with you all the time, this will make the job easier. Please use the following (this is the information that makes the doctor's sit up and listen):

CDAI
http://www.ibdjohn.com/cdai/

Bristol Stool Scale
http://en.wikipedia.org/wiki/Bristol_Stool_Scale

The comparative pain scale
no pain 0, 10 excrutiating pain)
http://www.tipna.org/info/documents/ComparativePainScale.htm

It would be helpful if you learnt about your disease and the workings of the gut. Different parts of your intestine are responsible for the absorption of different nutrients. There is the duodenum, the jejunum, the ileum and the colon. The colon is primarily responsible for reabsorbing water and minerals. http://en.wikipedia.org/wiki/Human_gastrointestinal_tractI suggest that you print out the first diagram in this scientific paper, which indicates approximately where what is absorbed in the intestine: http://www.cmaj.ca/content/166/10/1297.full

With Crohn's, one can end up with malnutrition or Crohn's anorexia depending on where the disease is located. It will probably surprise you to hear that the majority of obese patients frequently suffer from vitamin deficiencies. Fast (fried) food has very few vitamins.

(continued...)

Overweight with crohns? NEW
by: Lydia D.

2/2

If you are on your usual food plus Boost then that is a lot of calories. Your nutritionist should have told you not to eat anything else. This liquid diet is what helps Crohn's heal. This approach is used mainly in Japan for the treatment of young people. It is successful, but only as long as you stick to the liquid diet. As soon as you start on solids, the Crohn's will likely be exacerbated or flare up again.

I understand why your doctors don't want to put you on stronger medication - steroids stunt growth and delay puberty and the other stronger medication has bad side-effects in young people.

This is how many calories you need a day - 4 x Boost = 1200 kcalories and any sugary drinks will take you over the 1600 kcal required if you are sedentary (i.e. no sport).
http://howmanycaloriesdoineedaday.blogspot.de/

Whatever you do, please do not starve yourself. If you are allowed to eat anything, then it should be nutritious and full of vitamins and minerals. It is better to eat 5-7 small meals a day than 3 big meals - this is easier on the gut.

The problem with Boost is that the vitamin content varies according to storage conditions. This might mean that need a children's vitamin tablet in addition. However, the fact that you do not have cravings would indicate that your vitamin status is most likely good. If your body does not get enough vitamins and minerals then it won't be able to heal itself. Thus, you will just get sicker.

Vitamin and Mineral Fact Sheets
http://ods.od.nih.gov/factsheets/list-VitaminsMinerals/

I would encourage you to get in touch with your local Crohn's Colitis group to see whether or not there are some young people that you could talk to. Then you would get a bit more support closer to home. http://www.ccfa.org/chapters/

I am 52 and live in Germany so I can only help you so much. Try and build a support network around you and talk to your parents about what you learn about the disease. It is very important that they are there for you. You will slowly have to educate them and your (close) friends about your disease. I don't tell just anyone that I have the disease.

I hope that you will be able to get lots of rest this weekend. Try doing something that will make you feel good - watch a good film or do some drawing...

Thanks for the reply I was the one who posted the question. NEW
by: Anonymous

I am not on any medication. At first they put me on pentesa but it wasnt working so I came off. I was told by my nutritionist to have 4 boost a day. I try to talk to my doctors but they seem to always judge me and make me feel horrible about myself. I eat healthy ( right now I'm on a diet to help ) and am rarely ever hungry. My exercise and sports aren't the greatest because they are hard to do when your in pain but I'm trying to improve that. I just don't want to get to a normal weight finally and begin to lose weight rapidly from a flare because my metabolism would be better.

Overweight with crohns? NEW
by: Lydia D.

I suggest that you discuss the weight issue with your doctors. You don't say what medication your are on - it is normal to gain weight with steroids.

What medication are you on - amount and time of dosing?
How many litres of Boost are you drinking?
What other little symptoms of Crohn's do you have.
How much sport do you do?
How many sweets, chocolate, cola, sodas are you eating/drinking?

If you are not eating proper food and existing on Boost, then it doesn't surprise me that you feel a little queasy. However, I feel that you have not given us sufficient details to be able to help you.

There is no recipe that fits all sizes with Crohn's. You can help yourself if you eat healthily, ensure that you have adequate vitamin and mineral intake and do as much sport as you can.

Nobody can tell you whether or not you will get a bad flare up. However, losing weight does not cause Crohn's. The best idea is to stick with what the doctors tell you, keep a patient food/mood/symptom/medication diary, not to drink sodas and colas and avoid sweets/honey/maple syrup, etc.

Do a calorie count of your diet. I suspect that you are eating/drinking more than Boost and that is what is making you fat. http://www.thecaloriecounter.com/

I suggest you read this thread, where I have posted numerous links to help a young patient like yourself, including what to include in a diary. http://www.crohns-disease-and-stress.com/what-happens-after-you-take-medication-for-crohns-disease.html#comments

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