4 long hard years with Crohns

[FireflyX]

So I suppose I ought to introduce myself. I'm Tom, age 19 and was diagnosed with crohns at 15 but I think I was starting to develop it around the age of 12 but just thought I had a weak bowel or something Now I have got crohns pretty bad and I admit I am full of self pity but I have seen people a lot worse off than me. anyway here's my story:

I was always a perfectly healthy kid. Never visited the doctor, ate healthy meals with plenty of veg, rarely touched junk food or fast food and then this happens

However I started to get very ill when I was 15 and started having a lot of pain on the toilet. It was also concerning that I only weighed 84lbs (record for underweight crohns guy?) so my mum took me to the doctor who suspected it was either crohns or colitis. A colonoscopy confirmed that I had crohns and I was stopped from eating food immediately. Instead I had to have modulen for 8 weeks. When I was finally allowed to eat again my symptoms worsened so the doctor said I was going to be given some medication which should help. Oh that's good then I thought so like a naive teenager I just took it without bothering to look into it. So I happily took my 8 tablets of the dreaded Prednisone and it did make a real difference to my crohns. But it wasn't all good the side effects from that stuff are awful and I think I got them all. The worst one was that I looked like I had a giant head on a tiny body.

I stayed well for quite some time and was put on Azathioprine as staying on pred for a long time was bad. I continued to stay well until I was 17. I had gone up to 150lbs by now but had dropped to 135 as I was having a bad flare up. In fact this time it was so bad I ended up in hospital. After 8 days of constantly going to the toilet I was put on Infliximab and it was like a miracle cure. I felt like I didn't even have crohns any more. Unfortunately that only lasted a year until it had stopped working and I was ill again. Luckily over that year I had managed to build myself up to 190lbs.

I am currently on Humira which seems to have just made me constipated. I'm still getting a lot of really bad stomach pains to the point where I go hot and dizzy. The doctor has suggested I go on pred again but I promised myself I'd never touch that stuff again. I am trying to control it myself with my diet but if I eat nothing but fish and bread I still get bad stomach cramps :confused2: I also feel awful and bloated weighing 190lbs but I'm working on replacing the fat with muscle. I am using anabolic steroids to help with this and I know you guys will probably think I'm an idiot for that but progress in the gym seems impossible when you have crohns.


Sooo... that's my story. Now I just sit back and hope they find a cure for us all soon

 

[seaofdreams]

Welcome Tom

Wow, it sounds like you've been through a lot. How often are you getting Humira shots?

There are a few guys and girls on here who are really into fitness and exercise who could give you loads of advice when it comes to working out with Crohn's.

I can completely sympathize with you on the Prednisone issue. Most of my side effects are psychological eg. anxiety, moodiness, insomnia rather than physical but it's a horrible drug to be on and I can't wait to finish this taper.

I hope you stick around and find the support and information you need and also to share what I imagine would be a wealth of knowledge you have after 4 years with the disease

 

[Jennifer]

Hi and welcome! Yes Prednisone sucks, A LOT but in the end it can be a lifesaver, literally. I've been on it three times before starting when I was 9 years old and I know what its like to have what's called the "moon face." Such a nice and unfortunate drug all at the same time. Controlling your diet is not the same thing as controlling your disease and sometimes we gotta do what we gotta do even if that means taking a drug that NO ONE likes to take. I really hope that you get your medication figured out so you can start feeling well again because that's what's important.

 

[Dexky]

Hi Tom, welcome!! I'm just curious where you are getting the anabolics? In the states, I'm pretty sure they have to be prescribed...unless you are a professional athlete :lol:.

 

[kello82]

hey buddy! i am 20, were close in age thats cool. theres a ton of people in our age bracket popping up on here, so you will get lots of great advice from them

some of what you typed could have been my story too! seriously, i was on the infliximab....was almost like magic, i mean not remission but as close as ive ever gotten to it, and then it just stopped working.
also the pred....the moonface my god, that was probably one of the most terrible things. going to school already feeling like total crap and then feeling so embarrased about how you look too. i mean i had my friends they knew it was medication related but still you feel like an alien. high school was a bitch for me lol....sounds like it prob wasnt too good for you either with these past 4 years eh?

anyways. umm so yes and i swore to myself id never take pred again either. i dont have too bad of side effects WHILE on it, except some mental breakdown here and there. hole in my bathroom door from the last time i was on it, caused by a bare foot wielded in anger at having to rush down and get a CT scan i knew i didnt need. anyways, but when weaning....its a nightmare. full on fever, sweats, chills, throwing up....you name it and its hard to tell if its just the symptoms of the pred or if its the crohns flaring because im coming down on the pred. so anyways, i really try to avoid pred as well.


i also have been on the humira, but it did pretty much nothing for me. was on it for a good year or so, played with the dosage but never really worked out. so cant help you with that, sorry.

now the poo cramps, i CAN feel for you on that. is it like....your stomach hurts all the time but when it is THE time lol, when the cramps come and you have to go to the bathroom....it is extreme stomach pain? then when youre done, that sharp pain is gone but the underlying is still there. always. ? thats how it was for me......and yes the cramping pain, hot, and dizzy...absolutely. it almost made me delireous (sp?) sometimes. i couldnt process what people were saying to me, its weird.
but anyways, i never really found much to help it unfortunately. a used a heating pad a lot, it relaxed things a little bit.

graphic question....when you poo, it is not very thin is it? a stricture or narrowing of the intestines can cause constipation and cramps. just a thought.

re: the anabolics......that just sounds like a bad idea to me. i mean i dont know anything about them really, but crohns already has made your body a tangled mess of confusion and by doing roids you are just compounding on top of that.
i can understand where youre coming from though, wanting to look toned and healthy, and thats really hard to do with crohns lol like you said. espec as a guy....being the skinny weak looking dude is hard.


allright well that was extremely rambly but i hope some of it helps. if you ever want to chat about things and life with crohns and being a young adult and all that, feel free to pm me. always here.

good luck, and welcome to the forum btw. haha

 

[Zalanicht]

Hey Tom, I`m Tom too. Welcome to the forum! There`s lots of people our age here as well so hopefully some of your questions will get answered.

 

[FireflyX]

Wow, it sounds like you've been through a lot. How often are you getting Humira shots?

I take 2 every 2 weeks.

Hi and welcome! Yes Prednisone sucks, A LOT but in the end it can be a lifesaver, literally

Well I think I'd only consider taking it again if my life depended on it

Hi Tom, welcome!! I'm just curious where you are getting the anabolics? In the states, I'm pretty sure they have to be prescribed...unless you are a professional athlete

I didn't mention I'm in the UK so it's perfectly legal to buy them for recreational use. From what I've read I thought they were quite a lot of teens in the states using them illegally...

high school was a bitch for me lol....sounds like it prob wasnt too good for you either with these past 4 years eh?

The last 2 years I was there were really bad. I guess the worst thing was wondering why the anorexic girls had more weight on them than me :shifty-t:

graphic question....when you poo, it is not very thin is it? a stricture or narrowing of the intestines can cause constipation and cramps. just a thought.

Can't really tell... I haven't done a solid poo for quite some time now, it's always like mucusy diarrhoea.



Anyway thanks for the welcomes guys

 

[DustyKat]

Hi Tom and :welcome:

I'm thinking along the same lines as Kelly regarding the constipation, pain and cramping, probably not a bad idea to rule out you don't have any narrowing going on. As to the steroids, well since I don't have IBD I feel a bit of a fraud commenting on it. It is a bit like choosing your poison isn't it................... Pred does all the good on the inside but makes the outside look like **** whereas anabolics make the outside look good and craps on the inside. I think they both can wreak havoc with ya head.

There's loads of people on here your age Tom so you will be a very welcome addition, plus there's info, support and laughs. Welcome aboard!

All the best,
Dusty

 

[FireflyX]

Pred does all the good on the inside but makes the outside look like **** whereas anabolics make the outside look and craps on the inside.

That's a pretty interesting way of thinking about it...

 

[FireflyX]

It's also interesting how a person can go from one extreme to the other. I used to be dangerously underweight a few years back and now I'm considered obese :lol2:

 

[Astra]

Hi Tom
and welcome fellow Brit, where are you?

glad you found us, lots of young uns on here for you.
I'm with the others about ananbolic steroids, whilst these promote endurance and muscle growth, corticosteroids like Pred help to control swelling. If you have swelling from inflammation, Pred would be the lesser of 2 evils, no-one likes them, I'm on another round at the mo, but it's an excellent med in reducing swelling. If you're constipated, then you could have narrowing caused by swelling. There are some threads about gaining weight and muscle, also lots of gym stuff.
What a shame the Infliximab stopped working, did they mention about starting Aza again?
hope the Humira starts working soon, maybe you have to give it some time?
lotsa luv
Joan xxx

 

[FireflyX]

Hi Joan, I'm in Stockton round the north east.

What a shame the Infliximab stopped working, did they mention about starting Aza again?

I've never taken it since I was on Infliximab but I was at my best when I was on the Azathioprine and Infliximab. Might be worth talking to my doctor about using it with the Humira actually...

 

[Crohn's 35]

Love your Avatar!!! Funny. Sorry I am late coming on here I am behind these days.

Being on two drugs are some that alot of people have to endure, the AZA will suppress your immune system so the Humira may work better. Worth looking into. I was on weekly shots of Humira til it just died out. Let us know what your doc says! Glad you are here. Over the pond people are so nice! :thumright:

 

[Dallies]

Hiya Tom, welcome to the forum xxxxx