Crohn's Disease Support Group

I'm 19 and was diagnosed with Crohns earlier this year. My doctor hasn't done much explaining, and honestly I'm still kind of confused about what it even is. I tried m6 and had a reaction to it, and I was on humira, but it wasn't helping and I had a reaction to that to. I've been on prednisone for almost two weeks, but I will be off of it in less than three, and then I won't be on any medications for it. I feel like no one really understands, and I find myself depressed and secluding myself from the world, is that normal? I just don't want to be around people because I don't feel good and I feel like I'm being judged for it. I really just feel alone. I'm also having a hard time working, I found that when I work outside in the heat, I feel worse. Being in the heat period makes me feel worse, and I don't know if that's from the crohns or not. I could go on for days with all the questions I have, so any advice helps really.

Hi, i'm 23 and i'm from belgium (the dutch side).

I've been diagnosed since I was 15. I'm so sorry you feel so down . I just wanted to let u know you are not alone. People all over the world are struggling with this disease. Does not make it easier though.

Here we don't have concerns like health insurance, but the rest is pretty much the same.

I had an operation at the age of 16 and I didn't get much support or understanding from people around me. I guess you don't know till you are in the same position.

I started therapy a couple of weeks ago, so after all these years I can start dealing with my emotions.

I think it's a positive step that you've taken, joining this support group.

You can find a lot of answers and first hand experiences.

If u have questions I'll be happy to answer them as best as I can.

First off Crohn is a disease caused by your immune system. It's attacking your intestines, so they get inflamed and cause ulcers.

The prednisone is a steriod; it's to threat the inflamation. It does not really help the Crohn side of it. Steriodes usually make u bloated and tired. At the end of the treatment you are going to get a lot of energy back.

If your disease is active you are going to feel flu-like. You're body is not taking enough nutrients so you lose weight fast. It's possible you are going to get a fever and feel terrible.

All in all what you are feeling is normal. Overtiring yourself is not going to help. Make sure you get enough rest.

I'm not a doctor but all the crohnpatients I know of take immunosupressents. I go in every 2 months and get intraveneus medication. I've been on pills too. You need to talk to your doctor about this. It's very important. The downside to these types of meds is that I get sick a lot.

Feeling alone and isolated is very normal, I still feel that way sometimes after 10 years... It's not a very common disease and people don't get being sick, especially because you don't always look like it. Talking about it helps. Looking for kindred spirits help.

The thing is, you need to wrap your head around the fact that u have a disease and it's not going away. It can be very manageble if you take good care of yourself but you are never going to be like the rest. I just take one hurdle at a time and think positive. The most important thing though is getting informed by your doctor or all the good sites out there or here.

Think positive

Grtz Lynn

Post edited by: Lynn00, at: 06/15/2012 06:11 PM

@ Lynn, have you changed your diet at all? What medications have you tried? I've only tried the two I had reactions to and I don't really even know what is out there other than those. (Humira and M6)

The oral medication was imuran and now I'm on Remicade. I've been in remmision for a year or two but I still have to go to the bathroom a lot. I don't eat spicy food, can't eat fruit (except bananas), can't drink alcohol (wine is better than beer if you do drink), I react badly to milkproduct if I drink more than a splash of milk in my coffee; A good tip: instead of taking anti diarrheals like immodium (loperamide), try enterol, you're less likely to get constapated.

grtz Lynn

By the way do you know that depression is one of the possible side affect of prednisone?

Thank you

My doctor told me that as I'm cutting back I'll get a little depressed, I've been super anxious to.

I've been taking anti-depressants for the past 3 years, to try to cope. I had minor panick attacks all the time. It helps with stress, because everything doesn't seem so close; so maybe its not really steriod related.

That is very possible. Do you have problems with heat? It's really hot out right now, and it's like I go outside and get to hot and end up inside exhausted and in a ton of pain.

I have big problems with the heat. I try and do outside things in the early morning...alot of the time I get really tired around 2 or 3 pm and start looking for my housekeeper and chef..lol..Tomorrow it is to be 99 outside which means me INSIDE..It really drains me of energy and I sweat alot..never used to..dang..Maybe it's the meds.

It's good to know I'm not the only one!