My Story :/

[Liam-Sman]

Hello all. I finally decided to join the forum to talk about my problems. So here my story.
I got diagnosed with Crohns two years ago. Im 18 now and its really becoming enough. Im fed up. I have had two major relapses since I have been diagnosed. My relapses include symptoms of diarrhea (1/2 times a day) which is not allot compared to others I understand. I also have really bad stomach cramps, I cant move and dont want to talk (these would last around 2 hours). I also feel the other symptoms (i.e tiredness and achy joints)
But Im always ill it seems, even outside my major relapses. I have stomach cramps around once every two days. And I have diarrhea about once a fortnight. And constantly have achy joints and tiredness.

I often find it hard to sleep because I worry about my crohns, I also find I have allot of wind and cramping at night time. However if I do sleep I end up having nightmares about my crohns.
I am currently doing a-levels at college but I have missed so much college because of my relapse. I also find it hard to revise because I cant focus… My crhons is always on my mind.
I have been though alot of medication (NONE of which have ever made any difference in the long run. Some have made me feel better for a week or two, then its gone down hill again) If anything, it makes me worse (excuse the spelling errors, I don’t know how to spell all the names):
-Pentasa
-Prednisolone
-Mesevant
-Meseren
-Azathioprine
-Mebeverine

Im currently on:
-Budenofalk
-Mercaptopurine
-Iron Suppliments

That’s pretty much it, I just need someone to talk to about it all. I don’t know anyone else with crohns. Its just been getting to much and nothing seems to help.

Thanks

 

[SarahBear]

Hi, welcome to the forum!

I'm sorry to hear you're having such a rough time. You've definitely come to the right place, though! We're here for you any time you want to talk!

Have you talked to your doctor about the problems sleeping? To be honest, it sounds like you might benefit from counseling (as would most of us, I'm sure). This can be such a difficult thing to deal with, and just being able to talk it out can make a big difference.

How long have you been taking the mercaptopurine? You might want to look at the 6-MP (mercaptopurine) section of the Treatment forum, HERE. Does your doctor have any plans as to what you might try next? Have you had your vitamin levels tested?

I hope things get better for you soon! :hug:

 

[Liam-Sman]

The Azathioprine made me really ill. When I upped the dossage it made me sick and dizzy for about two weeks. I also had to go into hospital due to bad chest pains (which the doctor in the AandE said could have been because of the Azathioprine). I missed over three weeks of college (I missed a couple of weeks of college at the start of the year aswell, due to my crohns) and I really couldn't afford to miss anymore so my doctor prescribed me with Mercaptopurine in November.

I was too scared to take it because I feared I would get a similar reaction to it, I thought I would wait until I finish the year at college (july) and then start taking it. But things have been so bad recently I gave in and took my first one today.

I presume my vitamin levels are okay at the moment, I haven't had a blood test in a month.

Thankyou for your replie,
L

 

[afidz]

A long with what we talked about in chat, I would also suggest going to some type of counceling, it seems like you have a lot of thoughts and worries that you need to get off your chest. We had a pretty good talk in chat ( I think so) feel free to come in there anytime and talk to whoever is in there about whats on your mind. This is a very supportive community, it can help you in so many ways. I enjoyed getting to know you, look forward to hearing from you soon!

 

[JJD]

Hi, I'm Josh, also 18, diagnosed with Crohn's at the age of 10.

Times like these are tough on us, one Important lesson I have learnt whilst I have been suffering with Crohn's that has seemed to work for me to keep me well Is by not worrying about Anything at all. When I was In School I used to worry about everything because of my Crohn's, I kept it a secret from everyone, I didn't even want my teachers knowing although they had to because my attendance was so poor. I was constantly worried somebody would find out that I had crohn's disease and I would get labelled so when people would ask why I havent been at school I would lie, anyway before I drift onto a different subject I had noticed when I began to worry / panic about anything at all, these would be times when my crohn's would be at its worst. I know everyone's different ect ect, however It might be worth trying to take a chilled out approach to everything for a while and see how it goes (could be quite hard with the situation your in at the moment), it might help it might not, nothing to lose. Also have you seen your doctor recently? there are some more advanced medicines out there. Also what's your diet like?

Crohns may seem like a giant obstacle in your life right now, but trust me an obstacle is all it is, you will get past it and live your life however you wish, I now see Crohn's as a positive in my life, its made me appreciate life a lot more.

 

[Beach bum]

Sorry you are going through this at such a young age Squirrel , I am 36 and I struggle to get my head round it all.

I really think you need to look at supplementing your vitamins. I think it would help alot with your tiredness , difficulty with sleeping and the emotional drain associated with those things - it did for me.
There are many options, pills , sprays and more natural things like juicing (check out the diet forum)
Relaxation as already mentioned is very important, some form of yoga or pilates before bed could help to calm you, good luck.