New Member- Cramps

Hello. I got diagnosed with Crohn's this year, around the end of April. I'm only 14 but I spent the last 8 years suffering with symptoms, not specifically those of Crohn's. I had facial swelling, it started off just on the lips but now its all over my face. I started off being diagnosed with oral allergy syndrome after 5 years of investigation but they couldn't confirm it so they tried diagnosing me with OFG, which lead swiftly into a biopsy of my lip, followed by a look in at my bowel habits. At that time, I was going through a phase where my body physically couldnt take in food so I would throw up a lot. It got worse so they did an endoscopy and a colonoscopy and confirmed Crohn's. Because I am from an asian background, my mum got really worried. The only showing symptoms were the throwing up and facial swelling, mainly on the lips. After going on a liquid diet, Modulen, for 5 weeks, I lost a considerable amount of weight, mainly because I didn't drink it. I felt as if I was fat, which is really stupid, but it caused me to want to starve myself, hence me throwing up even my milk. Because the modulen wasnt working, the doctors prescribed steriods for me to take alongside my azathioprine, which is the course they started me on. The steriods are horrible. They make me feel sick all the time and I end up forcing myself to vomit because it doesnt always come out. I take a bunch of pills before school every morning and, due to side effects, end up being moody and grouchy. Now, even though the doctor says I am getting better, i dont feel any better. My face still swells, as well as my lips and I am still getting awful tummy pains, all in my upper body region. My whole body feels weakened and it got to me during exams where I threw up straight after writing a paper. I really need help. What can I do? (I am from the UK btw)

Post Edited (amz432) : 7/2/2018 3:38:12 PM (GMT-6)

Hi amz432,

It's so difficult dealing with this disease at such a young age. Your symptoms aren't typical, which might be good news, but it's really hard to say right at this point. Prednisone has some nasty side effects, and even more so at your age, but it does at least usually work very quickly, and it will give the aza time to take hold, which could take awhile.

As tough as it is, you really need to get some nutritious food into you. The less you eat, the less food will appeal to you, so you have to try to take small meals, and maybe supplement between meals with Ensure or Boost. If you start that and continue to feel nauseous or throw up, your GI needs to investigate further.

The good news for you is, Crohn's treatment has come a long way. You're still very young, and the medications will continue to improve. Once you get your symptoms under control, you'll be able to return to a normal lifestyle.

Hope you feel better soon. Keep us posted, and ask questions. HW is a tremendous resource, and there's many experienced people here to help you out.

Thanks 73monte and Labradorite, I really need the support. It is so hard for me to go to school everyday, knowing that it's going to drain me, like all my pills do. I feel so low on energy and coffee makes me feel awful, even though i need it to stay awake. I feel as if the Prednisolone makes me feel worse but the doctor said it is making me better. I still throw up, sometimes I force myself to be sick now, but it is getting better. i am still so conscious bout the way that i look and the steroids, after being on them for more than 5 weeks, make me feel really podgy and fat. I lost a lot of weight on the liquid diet, which i was proud of because i have been looking to lose weigt. i am not actually overweight but i feel like my body could look better. The steroids have made me gain weight, which the doctors are happy about. I'm not happy because now i feel like i have to eat less or work out more. I try to eat vegetables and that but i just throw up again.

I completely agree with what 73 has written to you. Getting this throwing up resolved it so important. You are not getting the proper nutrients your body needs. Your body needs the nutrients to heal. That can have some very serious consequences you don't want.

about the weight gain from the steroid. Most of the weight gain is water build up, once you are off of it you will lose weight. You think your face looks a little fuller, are you sure it's not a body image thing you are dealing with. It is called moon face, I was on steroids a long time before moon face hit.

I urge you to sit down & have an honest discussion with your mom about everything that is going on. If you are feeling overwhelmed, you may well benefit from some talk therapy with a counselor. Also, check in your area for any teen support programs for teens with IBD issues. You would be amazed at the young teens just like you are struggling with the same issues.

Take care.