Starting Adult Life Sick

[Daydreamer88]

I'm really sorry it's so long but it's been a long and rough 2 and half years...

I had just graduated from high school in the summer of 2007. I started 2 new jobs and I also started going to community college in the fall and thought that my life was about to take off as a normal young adult. I started having symptoms in November but i thought it was just due to stress. My mom and I are very close and that Thanksgiving she went to spend the holiday with my step-dads family in North Carolina. I missed her very much and spending the holiday without her just broke my heart. I was going to the bathroom more then usual and not eating hardly anything but like I said I thought it was just stress and depression. So I ignored it and went on with life. I went to school in the morning, finished classes around 2 o'clock went to my first job, worked until 5 then went to my second job and worked until 8. After work i came home, did my homework and went to bed. I thought that was a normal young adult life. You do what you have to do.

I think it was about December when I really noticed something was wrong.I had just turned 19 and I noticed there was blood in my stool but i didn't think anything of it. It's happened before and it was probably nothing serious. I also starting dating my first boyfriend the day after Christmas. Everything seemed perfect except the whole going to the bathroom as often as i was.

I took a quarter off in January because my brother was getting married in Florida so we had to travel down there for 2 weeks... Poor me right? :lol: While we were down there I would get horrible stomach aches but i was too busy to notice. I still had not told anyone about my frequent bathroom trips nor did i tell anyone about the blood in it. 2 week passed by pretty fast but i was fine with it. I wanted to get back to my life working and being myself. I got back to find out my boyfriend was cheating on me so we broke up, then about 2 weeks later my car was broken into. STRESS STRESS STRESS STRESS STRESS....
I felt like I was going to explode. Could anything else go wrong?

I met and started dating my current boyfriend while hiding my stomach issues and using the bathroom, what seemed like every 20 minutes. Work was almost impossible to attend because I was working at Sears Portrait studio as a Photographer and was working by myself everyday. Almost a month after i started dating my boyfriend I finally broke down and couldn't take it anymore. I told my mom and my boyfriend what was going on. My mom told me to find a Specialist.

So I did and went through the whole 9 yards. Blood test, a colonoscopy, Diets. EVERYTHING.

I started out on Asacol which it felt like symptoms were only getting worse. I had to quit my job because of the stomach pain and not being able to run to the bathroom when i needed to. I then was put on Prednisone & Imuran.

July i started going to a technical school to become a dental assistant. A few weeks into the schooling, my blood level was way too low. I was admitted into the Hospital and was there for 5 days. I was so anemic and dehydrated that the IV tech had a difficult time finding my veins. When she finally did I received a blood transfusion, and my first infusion of Remicade. I was put on Quarantine because the hospital was afraid i might have C-diff. ( a highly contagious stomach bacteria passed through the stool contact) I was negative after 3 days. My blood level started stabilizing so i was sent home. When i returned to schoo I was told if i missed anymore school i would be terminated. AWESOME.

A few months passed i was still really sick and could barely make it to school. Thank goodness i only had to go to school for 4 hour a day.

In October my blood level plummeted to a very low 18 when i woman my age should be at a 34. I was admitted back into the hospital for another 8 days. On the way down to my hospital room we got into the elevator with the same IV tech that had found my vein the last time. She remembered me and requested that she do my IV. I was glad to see a familiar face especially when i was not feeling so well. I had to drink the go-lightly stuff, get 2 enemas, a colonoscopy that i woke up during and could feel them taking biopsies, and a blood transfusion all in the first day. Great... Is this how this hospital stay is going to be? People would visit me frequently and it made me happy when they would arrive. My baby cousin came one day who was only 3 at the time but i can remember her face like it was yesterday. She was horrified to see the IV and all the tubes i had running everywhere. She came over and kissed my IV site and said "All better?" We laid in bed for a couple of hours and watched Dora. That really made my day. I finally got to go home on Halloween just in time for the trick-or-treaters! It felt good to sleep in my own bed with my boyfriend and to see my dog.

I have not been in the hospital since October of 2008 but i have been very close. I still have severe symptoms but i try to load myself up with prednisone to keep my out of the hospital. Remicade every 8 weeks at 10 mg per kg. It's become EXPENSIVE! All I can say is Thank Goodness for health insurance.

I graduated as a Dental Assistant even through all the troubles i had with the school. I am back in school to stay on my parents insurance. Funny how someone can be so sick and still have to go to school to keep their insurance.


I've noticed that i have become very frustrated with my Doctor because it seems like he's getting tired of nothing working and tired of seeing me. What Should I do?

 

[crazycanuck]

Good god I'm very sorry. I'm a young guy too with Crohn's and it is extremely difficult. I'm in university still and it is so incredibly difficult to keep my attendence at a decent level, you should be very proud for making it through with a degree. My best suggestion would be to switch doctors. I did 6 weeks ago and it was the best thing I ever could have done. I really don't think its possible to get better if your own doctor is stressing you out right? My old doctor had no solutions or advice for anything and was NEVER available, all he would tell me is to increase the number of pills I was taking.... My new doctor calls regularly to make sure I'm alright and my new meds are going well. I'm sorry for your troubles but I'll wish you the best of luck in the future and hope you get better sooner than later.

 

[shazamataz]

Thanks for sharing your story Sounds like you have been managing quite well and I hope it stays that way. Are you working as a dental assistant now?

 

[themuse]

Sorry to hear about all your obstacles. I had the same issues right out of high school, working mon-fri 6-9am then attending university classes the rest of the day, while trying to enjoy the social aspect of it all. Needless to say I didn't make it back after 1st semester. I think there is one common denominator...stress!

I hope you find another doctor that has some answers, so you can get your life back on track. One thing i've learned is to not be so eager to start adulthood. I finished University, have a wife a baby boy and another baby boy on the way, and a good job. Things have a way of working out in the end, as long as you have some faith and patience.

Good luck.

 

[Peaches]

:welcome: Daydreamer!!! You have been through it alright! I would switch doctors. I've heard too many people being happy that they did this not to suggest it. I would do my best to see a GI who specializes in IBD and sees IBD patients all the time. They would be your best bet since it seems your disease process sounds aggressive. I'm glad you found us!

 

[Daydreamer88]

Thank you so much to all of you. It's really nice ot hear from people who know whats it's like to be sick with this disease and that understand where your coming from.

A new doctor sounds like a good idea but i always worry about the What-if's. But i think I'm definitely going to need to find someone new.

As far as working I haven't worked since my last job at Sears. I don't know how other people do it but it seems employers are not willing to be flexible with your flare ups and sometimes when i go to leave in the morning i have to run back inside to use the bathroom and can't leave when i need to and then I'm late.

What to do what to do? What jobs do you all have? I need some ideas..

 

[katiesue1506]

Ahh... another Sears employee. I worked there for almost a year. I was a cashier, MCA, loss prevention associate and jewelry associate. I HATED that place. Were portrait associates expected to sell credit too?

 

[Crohn's 35]

Hi there and welcome, you have gotten some great support already. We know how this disease can be embarrassing and it doesnt have a whole lot of awareness from outsiders, not their fault as no one usually hasnt a clue of Crohns until they get it themselves. You should be honest with school, employers or bf and family members. You tell them of your disease, just say I have Crohns disease which is an incurable disease with no rhyme or reasons for flaring... I have never come across someone who has ignored it or say it is an excuse. Dealing with Crohns is sometimes just as bad as dealing with people who dont have the disease, family or not. I had previous jobs and everyone bent over backwards...

I had to change Gi's either from moving or getting a new one. Very few are experienced in dealing with a person with high pain or major symptoms. Trial and error are common with diet, drugs, and stress. I have had this disease dx for 17 years but longer with symptoms. When you are in pain you just want to get rid of it and not end up in the hospital. Keep us updated with your doc appts, hopefully you can get a good one in your area. Hang in there!

 

[imisspopcorn]

:welcome: Daydreamer

I agree with looking for a new doc. Maybe check out the CCFA website and see what doctors in your area are members...Also rate MD sites can be very telling, especially if other people have had the same experience with your current doctor....Good luck, I'm glad you found this forum.

 

[Daydreamer88]

Katiesue: No we weren't expected to sell credit but we did have a certain amount of cold calls we had to do everyday. I'm so glad to be done with that place though.I think by working there i was making myself even more sick..

 

[Peaches]

I think I unconsciously got myself into a position where I could control things. I started working with computers way back when (lead salesperson on a floor at a local shop) and migrated my way into service/network support. Did a stint with IBM right before I got married. After I got married I started a network consulting biz and have been doing that ever since. Recently (last 5 years or so) parlayed that into a jewelry design biz that I LOVE. BUT...I am lucky - in that whatever money I make - we don't have to live on it. So, when I'm sick - I scale things back - when I'm doing better - I scale things up. I am lucky - that's really the main point.

There are whole threads devoted to this topic. Do a search for work and one for jobs and see what you come up with.

 

[CrohnsHobo]

Welcome daydreamer. Definitely not an easy thing to do when young. You can get through it!

Heck, if I can do it someone that sounds as strong as you do can.