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Recently Diagnosed and getting used to it.

Hi my name is adam.

The first time I heard the words "crohn's disease" was November 2011. I was a few weeks away from graduating college and life was good. Or so I thought. I had been overweight for the past 10 or so years (I am 23 now) but in the summer of 2011 I worked landscaping and tried to eat reasonably well, and I lost about 20 lbs.

The first sign I noticed something wasn't right was in October, on my birthday. My friends and family took me out for dinner, and I could always eat a good portion, but that night I could not finish my meal. In the coming weeks I noticed it was getting worse, and I was starting to get abdominal pain. Keep in mind, prior to this I have never been sick in my life, like the worst thing I've ever had was a cold. So I waited, and waited, for it to go away, I am the kind of person you have to drag kicking and screaming to the doctor, lol. Eventually in November my grandparents were the ones to talk me into going to the ER. When I did they thought it was my appendix by my symptoms, and bloodwork. They sent me for surgery. The surgeon told me I would be in and out in less than an hour if everything went right and I'd be home by 8pm. I thought great, in and out and I'd be fixed. Not so. I woke up and he told me the news, found a 4CM abscess, they drained it and had a drain tube sticking out of one of the holes. I had to sit in the hospital for 4 days on IV antibiotics. After I got out I was still in quite a bit of pain and could hardly get dressed by myself. My 85 y/o grandmother had to put my socks on and help me get up...My parents on the other hand, my mom is the most supportive of all, but my dad I think has got bat shit insane, and pisses me off a lot. I'm sure that isn't helping.

I was scared and assumed I was going to die or something. The doctor told me he suspected crohn's (initially they thought diverticulitis but said I'm too young) and my reaction was literally, "What the fark is crohn's disease?".

Anyway, after a scope, they confirmed crohns of the terminal ileum, and he then referred me to a specialist. I was feeling pretty good at the time and the test results indicated I didn't need any drug therapy yet. I managed to to make it to July of 2012 before I had my first "flare". I was on a trip to west virginia and I couldn't eat for 3 days and kept vomiting. Eventually I got it under control without going to the hospital. I was "ok" until around november '12 where I started to have the same symptoms that I did on that trip. But they didn't go away unless I ate mostly liquid foods. I ended up waiting until after christmas to call my doctor, stupid me. I ended up being hospitalized for 10 days with a blockage due to a stricture (they still aren't 100% sure if it is scar tissue or inflammation). I had an NG tube down my nose, very attractive. I'm now on prednisone 15mg a day (was 20mg until this week) and I just got the results today that indicate I can take 6-MP. I'm due to start that as soon as the prescription comes in.

So that is my cliffs notes version of the past year and a bit for me. But to be honest the worst part about this whole thing is not the disease itself, it is dealing with the people around me, mostly family. A lot of them think it is like the flu where it will go away eventually, no matter how many times I explain. It is hard to go to family functions because people always bring up my problem and start going into some anecdote about how their friends mothers boyfriends cousins real estate agent has "the exact same thing"...

I used to be very scared of going to the doctors, to the point of where I would be scared to get my blood pressure checked. After all this I just go in and the worst part is the waiting haha. I used to weigh 260lbs when all this started and today I weighed in at 155lbs. Needless to say I've had to buy a wardrobe. I used to be a very outdoorsy/autmotive person and I haven't been able to do that stuff and it really frustrates me. To top it all of I am currently repeating the college courses I had to drop out of. I was so close to graduating!
 

Jim (POPS)

Jim (Pops)
Location
Antioch, Ca
Adam, I went through the samething. Went in too have my apendix removed and woke up and they did a resection and 5 days later it failed and I went septic. You are alot younger than me. When this happen I had just retired and I was 61 years old. I too have the same problums with some family members, they always think "You arn't that sick" I think that is one of the hardest thing about it all. To make things worse, my wife has Colitis and has since she has been 27. We meet when she was 18, I was 23 and just got out of the Army, so we have been together for a long time, funny that we both have IBD. I have crohns and she has colitis but they removed her colon years ago and she has a ileostomy for the rest of her life but she is cured, They can cure colitis if they remove your colon, no cure for crohns at all. I also had a ileostomy after going septic, had it for about 9 months and then they reversed it. As soon as they did that my damn crohns came back and I am in a flair right now.
You have alot of life ahead of you man, and you will get well and I will also. I got sick the same month and year as you did so we both have paid our dues. I have found that if I just keep truck'n and don't let it get me down things are alot better. I can't always do that but I sure try for the most part. I find it alot of help going into the chatroom here when I'm not doing to well, or if I am depresed about the whole thing. The people there do understand and they are really cool people. I hope that you will come visit us there sometime. I'll introduce you to all my friends. We are there around 6PM PST (California time, thats were I'm from)
Keep your head up man, together we ALL can get through this for sure. See ya soon.
Pops
 

David

Co-Founder
Location
Naples, Florida
Hey there Adam and welcome to the community. I'm sorry to hear of everything you've been through and are going through, that must be tough :(

Let me first say, I don't know what magical test was conducted on you that said you didn't need medication yet, but what you're experiencing right now is likely due to whoever dropped the ball on that one as there is no such thing with Crohn's disease. If you have Crohn's, it gets treated immediately. If you're still seeing the GI who talk you that you didn't need medication yet, I would seek out a new one.

The other problem I'm seeing is you're just about to be put on 6-MP but it can take three even six months to kick in. I realize they have you on steroids (they started you on a pretty small dose though) but it sounds like you're going to be tapering off that pretty quick. You're then going to have months of no treatment again because the 6-MP isn't yet at therapeutic levels in your system. As such, I'd ask for some sort of bridge therapy. Enteral nutrition is the first thing to come to mind and I suggest you research it. It can be tough to stick to, but it's an excellent treatment and can really make a difference while you wait for the 6-MP to kick in.

All my best to you.
 
To be honest I think it was more my fault as I kept telling the doctors I was "feeling fine" and my bloodwork appeared to be within the normal range (keep in mind I was just coming off the 3 different antibiotics I was on). This was because I was scared sh!tless of doctors and tests and I didn't want them to poke or prod at me anymore.

I just started the 6-MP and wow, it ruined my good week I was having! The pharmacist is telling me that it is normal to feel nauseous for the first few days.

Looking at the enteral nutrition, I have been on that before, just drinking only ensure and boost. I want to avoid it if I can as it is rather unpleasant.

Thanks for the replies, I am a college student so I often forget to check forums but I will try and come back when I can.
 
Adam,
Your story could almost mirror my husbands 20 years ago. I forced him to go basically got him in the car and took him. GI said it was a good thing I did as they drained a 50cc abscess and we are lucky that it did not burst. He was put on Asacol after diagnosis, which we now know, doesn't do a whole lot to control Crohns, he was back in the hospital a year later.
What I can say is finding the right combo of meds that work for you means getting your life back. My hubby has been on Imuran(Azathioprine) for the last 8 years. It is very similar to 6mp (same class of drugs) and he can do all the outdoorsy stuff he loves, fishing, hiking, skiing, camping.
He is even slightly overweight at this point but with as thin as he has gotten in the past it is great.
Have you tried taking the 6MP at night so you sleep through the nauseous phase. We did this with my son when he was on Imuran and for the short time he was on methotrexate. It seemed to make a difference. Hope things start working for you and you start feeling better soon. David is right about the 6MP taking a while to work and finding the right dosage to get to theraputic levels
 

David

Co-Founder
Location
Naples, Florida
Jmrogers has excellent advice about taking the 6MP at night. If you're already doing that, splitting the dose has helped some as well.

Please keep us updated as to how you're doing.
 
Im new too, a lot older than you are but Ive had the disease 30 years and it was never diagnosed. Like you it never lasted more than 5 days so while at times I went to the Dr at times no-one seemed very worried so I wasnt either. You are lucky to have gotten it so soon, it really got bad like 24/7 before a Dr finally got worried enuff to figure it out for me. Its a journey different to others, and yes peeps do piss you off cos you look alright even tho you are not and I HATE those "Ive got a cousin and shes alright now ...." stories - pffffft!!! Its made me very sensitive to other 'unseen' diseases now an I dont take anything for granted any more. This forum is fabulous - thinking of you and wish you well for the future. Try not to hit any of the idiots LOL Jen
 
Thank you for the replies everyone. The side effects of the 6MP seemed to have subsided, or they were actually something else. Either way I am feeling OK right now! I was actually able to eat a real breakfast this morning and it felt so good.

Hopefully this will help get rid of the stricture I have. The only symptoms I am having right now is slight cramping and loud gurgling noises as the food struggles to move through.

I haven't drank any ensure or boost in a while honestly I can't stand the taste of those chalk drinks anymore. The only one I will drink is the boost juice version that has more flavours.

I would like to do a lot more camping and stuff like that this summer but I may have to get one of those luggable loo's (the toilet seat on a bucket hahahah).
 
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