Community Forum

Hello everyone :) I'm new to the forum and already feeling better just knowing how much support is available here. While I appreciate the knowledge and insight of anyone dealing with this disease, I'm starting to realize that there are unique challenges to be faced depending on when your diagnosis is made. My question is, are there 20 and 30 somethings out there that would be interested in talking about how you've been able to work through accepting your diagnosis and dealing with treatment? 

 Reply posted for amart1226.

I was diagnosed with UC at 35. I had been with my boyfriend for 12 years at that time so I was completely comfortable letting him in on what was up. He isn't into detailed discussions about it but he understands what I mean when I say I'm having a bad tummy day, or I'm bleeding again. Instead of treating my colitis like a "bathroom" disease, I see it as an opportunity to educate people on it. I mean I don't run around saying "Hi, I'm Joanne. I have colitis." But if tummy issues or chronic health issues come up I casually mention I have colitis. If they ask what it is, I tell them without getting into gross details. I try to treat it no differently than if I had diabetes or arthritis. Some people in your life may need to know, some don't. Some want details, some won't, and that's fine. My co-workers don't treat me any differently since I've told them. It's not something we talk about, but they know I have it and they give me a little leeway if I'm a few minutes late for work due to "bathroom issues". People with other health problems go about their lives and simply explain any limitations it may cause them. I try to do the same.

 Reply posted for amart1226.

my husband was diagnosed in his late 40's.  Thankfully he has not had too much interruption in his work life from crohn's, but he has had his share of illness.

sorry to hear you are struggling with this...if there is something good to look at, at least you didn't have to suffer through your teens while battling this horrid disease.  not that the diagnosis is ever easy!

 Reply posted for crazyanniecroc.

Hi there!  Sorry to hear you have had so much trouble with your Crohn's.  As you might have seen below, I am also a teacher.  It does help to have the distractions of the day but it can also be difficult when you have to be "on" for the kids.  They are pretty perceptive though - more than adults usually- and take it easy on you when they know you aren't feeling well.  I know a lot of teachers who started off with subbing and then ended up with a permanent position in the school so maybe something like that will work out for you.  

 Reply posted for amart1226.

Hello my name is Annie i am 27 years old. I found out i had crohn's almost two years ago. Up until last may i had been in a flare for at least a couple years. I was ignorning the fact that something was wrong. I was married and had two step sons that needed me to take care of them. I was also a full time student. I had tried steriods with no help along with Asacal and Pentasa at there highest doses. No luch. Then May 2010 i started on Remicade i have not felt better. My energy is back and i feel great. Sadly while finding out that i had Chron's my husband left me and we got a divorce. I have not dated since then because i dont want to bring people into my life. I have a very supportive family. I was able to get my degree in elem. education. Sadly there were not enough jobs around where i live so i became a sub. teacher. I get to work almost everyday and that makes me happy. I also found that if you can stay active and give back to the community it helps you to get your mind off how you feel. I know there have been times when i have been so tired i am like can i really make it to the boy scout meeting, i have to say yes to my self because who else is going to be there for these boys and teach them differently. So that is my life.

 Reply posted for amart1226.

amart1226,
      Thansk for the response. I started with rowasa and my previous doctors were totally insensitive to my suffering. Although it was controlling only bleeding and I still suffered with pain and diarrhea for 2 years. I moved to a different state but had already accepted that I will have to bear the pain for the rest of my life and was not going to doctor regularly. My wife pushed me to follow up and I learnt that the new doc wanted me to feel better. From there I tried all mesalamine tablets(Lialda and others) nothing worked. Started prednisone with mesalamine didn't work. Stopped mesalamine and I went into remission the next day. Doc said Im alergic to mesalamine. so nearly after 2.5 years i had remission for 4 months. I felt awesome. Also tried corticosteroid enemas, to keep me in remission, but slowly I got back to flare. tried prednisone again,this time it didn't work. so with lot of hesitation tried azathiprine. Got sick immediately, tried twice and gave up. Now trying humira for 2 months, it is slow progress so far. Will see for a mont, if no progress will do a colonoscopy and go on remicade. I used to be scared of these medicines so much, not any more. Another doc said remicade works better than humira for UC. I almost nearing the end of road for medications.

 Reply posted for amart1226.

I haven't really started the SCD.  I read the book and it does make pretty good sense, but by the time I got around to getting ready to start it (bought a yogurt maker and everything), I was too deep in the flare up to try to follow it.  I was at a point where I couldn't tolerate much food and had totally lost my appetite.  Now that I'm starting to feel better, I might give it a try for real.  I will keep you posted.

 Reply posted for UCrelief.

Hello UCrelief. I can understand work stress, that's for sure. I'm sorry that you've had to keep your condition a secret--I think the fact that my boss and my immediate coworkers know about what I've been going through is the only thing that keeps me going because they've all been very supportive.

 Reply posted for etaylor.

Etaylor: I can completely relate to the emotional craziness! It doesn't take much to make me cry these days, but at this point, I'm not swinging too far in the cranky direction, so at least that's a benefit for those around me :) The other major side effect that I'm noticing with the prednisone is a foggy head/lightheadedness--it's pretty unpredictable and feels a little to close for comfort to the start of a panic attack, so I feel like I'm talking myself down a lot of the time. Fortunately, I do have some anti-anxiety meds that help a bit.

 Reply posted for amart1226.

I'm a 29 year old guy, married and have a 1 year old Angel. I have been diagnosed with Colitis 3 years back. So far I was under remission only for 4 months and that was over. my work and family stress always cause my symptoms go bad. Fortunately I have flexible work hours and works remotely to finish up work. I had kept my condition secret at my work place so far. I suffer almost every morning and somehow manage to get to work. There are times when I feel so down and other times ok. Now on Humira and hoping for some magic. I'm glad you started this chain.

 Reply posted for amart1226.

I am lucky so far that my principal is being very understanding, but I am worried about what will happen when she starts thinking about who to cut for next year...the joys of working at a non-union charter school.  I am also very lucky in that I have the best teacher's aid who shares my classroom with me so I know I can just run out to the bathroom if I need to and only one of my students has asked why I keep leaving while they are sleeping every day (I teach kindergarten).  

 Reply posted for etaylor.

Hi! Let me first just say that I have such admiration for you being a teacher and dealing with this type of illness. I'd think that it would be such a challenge to be in a job where you have to be "on" all the time when it's the last thing you feel like doing--I know several teachers who deal with issues like IBS and migraines and I am doing my best to draw strength from their examples of sticking it out through tough times.

 Reply posted for amart1226.

Hey!  Im glad you started this post.  I am 27 and have had Crohns for 14 years (this week) but I have been symptom free for close to 8 years.  I am in the middle of a flare right now and back on steroids.  This is a totally different experience than when I was sick before and my parents were there to take care of me and make the decisions for me.