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[Justanotherpatient]

Hi I'm Ben, I'm 16 and currently reside in England. About six months ago I began getting leg cramps and waking up in my sleep, so I went to the doctor and went back and forth getting blood test after blood test. Then one appointment I'm told I'm close to getting anemia and I've got a lot of inflammation.

About a month later I go for a hospital appointment and get told I'm anemic, and I'm going to need a colonoscopy and the throat one (forgot the technical term). Anywayyyy, I had the throat one done (which was possibly one of the worst experiences I can think of), but due to the laxative failing I had to rearrange the colonscopy. Unfortunately for me the laxative then proceeded to work immeadiately after my appointment once I got home. Yay me, right?

I then received an appointment for a barium swallow, which I barely got down and that took about two hours, doctors just pointed at some crack like appearance on the x'ray and whispered among themselves so don't know what that was about.

Finally I had my colonoscopy (also a very unpleasant experience) and the doctor said afterwards he thinks I've got crohns (this was what was predicted back when I was told about the anemia and inflammation).


Anyway here come the questions:

I found a letter saying I need a barium followthrough, is this just a miscommunication between the two hospitals (as I've had the procedures at two seperate ones) or is this different to the barium swallow?

I used to be not overly fit, but I could go for a session at the gym fine or practice some Muay Thai. But over the past 6 or so months I've dropped from 56 to 52 kilos, I'm never hungry anymore and eat no where near the amount I used too. I'm wondering how should I go about getting fit again? As nowadays I feel like I'm going to pass out after 10 minutes on the treadmill.

Do I definately have crohns? I've been reading up and apparently all crohns sufferers have stomach pain, diahorrea and weight loss. But I don't get diahorrea, and the stomach pain is horrific (is there any way to reduce the pain or atleast make it happen less often?)

I'm finding myself getting stomach pain between 2-6 times when I go to school and 0-1 times when I have a lazy day lying in bed, so I'm guessing the movement is a trigger which doesn't help the fact I want to get healthy.

Thank you if you've read all this and sorry if I've bored you, but I'm really confused and worried about having to live with this for the rest of my life..


P.S Have not been given any medication for crohns yet, only for the anemia.

 

[seaofdreams]

Hi Ben and welcome

There isn't really any "typical" symptoms of Crohn's. Some people can get diarrhea and some get constipation, some people get pain and bleeding and others don't. It's a very individual thing. Fatigue is a very common symptom though and it sounds like something you're struggling with. Because of the inflammation, the intestinal walls aren't able to absorb nutrients from food as well as people without Crohn's so malnutrition is something that is probably contributing to how you're feeling.

Hopefully you'll get a solid diagnosis soon and they can get you on the road to remission. It's hard to do a lot of physical activity when you're feeling sick or in pain so once they start treating you, you'll feel up to working out again.

Keep us posted

 

[semicolon306]

Ben - welcome

I have been sick since I was 8 years old and it took them years to sort of put a name on what I had, which was colitis. Then recently they are not sure they were right and think I might have had crohns all the time, so as you can see they are not really sure.

After many surgeries and MANY doctors I have learned you have to take this step my step and keep a log of input / output and any symptoms. Bring your diet down to basic and find out what your baseline normal is. Then you can add stuff into it slowly and see how you do with it.

I was 6 ft and 120 lbs (56 kg) and after some diet changes and learning how to control the attacks I was up to 220 lbs. I found out I had to take supplements, but they had to be powder or liquid form, since my system moves stuff through so quick. I also drink alot of protein drinks with soy, but have to be careful since I have gout.

I hope they find out what you have and you feel better. You might have to make some adjustments, but you can live a somewhat normal life As for your work out, take your time and do what you can, do NOT push yourself till you feel a bit normal. I workout 6 days a week, all free weights. The one thing going into the gym is that I need only do what I can, so I make adjustments, like if I am getting weak I slow down or stop for a bit. Only you know how you feel and what you can handle.

Any questions let me know and best of luck

 

[Dexky]

Hi Ben, welcome!! I can't add anything but just to say hope you stick around!! There are some others near your age on here. Hang in there!! Hope they get you sorted soon!!

 

[DustyKat]

Hi Ben and :welcome:

You've received great advice and I can only say that in my daughters case she didn't have diarrhoea either, so as Nicci said everyone is a little different which makes diagnosis difficult.

Stick around and browse through the forums and if you have any questions just fire away! Welcome aboard!

Take care,
Dusty

 

[Justanotherpatient]

Thanks for the welcoming and support. I've just been informed I've got an appointment on friday a couple cities over so I'll report back once I find out more.

 

[Rebecca85]

Hi, I just wanted to say I have very similar symptoms to you, my main symptom was the pain, which came on after eating and was aggravated by movement. A heat pad or hot bath is soothing. If you want to try painkillers use paracetamol and codeine, NOT ibuprofen or aspirin. And try following a low residue diet ( www.crohnsforum.com/wiki/low-residue-diet ).

Hopefully the fatigie and tiredness will get better once the anaemia improves, and once you are on treatment for the Crohn's. When your body is fighting infection it takes a lot of energy up. My fatigue seems to be lessening now, it will get better!

 

[Astra]

Hiya Ben
and welcome

I can't add anymore to what's been said and concur with Rebecca, only to say things WILL get better once you have a firm dx and on the appropriate meds. Remember, your fatigue is an indicator that there's inflammation, this is initiated by the immune system, then it sends out a response to try to fight it, thus working over time, result = instant fatigue!
listen to your body, you're doing it no favours by working out at the moment.
glad you found us, lots of friends here for you in the same boat!
lotsa luv
Joan xxx