Im New to this Site and in need of Support..

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Jellybean4688
Regular Member


Date Joined Jun 2008
Total Posts : 99
   Posted 6/10/2008 8:17 PM (GMT -6)   
Hi, I'm 22 years old and have been cursed with this disease. I feel like I am out of options and I will never get well again. It is so frustrating. I had to drop out of nursing school because I was too sick. I have been in the hospital twice this year already. I spend most of my time in the bathroom, and in bed because of terrible back and side pain. I am sick of seeing blood fill my toilet and I am sick of not having enough energy just to walk across the room. It is taking all I have to stay positive, but I feel very alone. Although, I do have an awesome support system. If it wasn't for them I wouldn't be making it. I feel drugged up all the time because of all the meds I am on and now we are discussing Remicaide. Will I ever get back to having a normal life????

Bigphule
Regular Member


Date Joined Dec 2007
Total Posts : 137
   Posted 6/10/2008 8:35 PM (GMT -6)   
Hey Jellybean, welcome, and I'm very sorry you're here.

I myself have yet to reach full remission, but there are quite a few people here who have and who are in remission. So to answer your question, yes you can get back to a normal life. It might take a while but you can.

We are all in the same boat here so please never hesitate to vent your frustrations, we all do from time to time.

Here is a suggestion, why don't you make a signature and tell us all about your meds and when you were diagnosed with UC. Those little things come in handy.

You've found another support group that is just amazing. The wealth of knowledge here (not from me hehe) is just impressive so ask any and all questions. Odds are someone has gone through what you're going through now before, or something quite similar. I don't mean that in a condicending way I mean that in a way to up lift your spirits to know that you're not alone.

Trust me, I'm from the government and I'm here to help. :P haha just kidding, I'm not from the government, but I'll help where I can.
Diagnosed UC 12/2007
Updated 6/2/08 
 
Prednisone 40mg x 1/day 
Mercaptopurine 50mg x1/day 


bellski
Regular Member


Date Joined Apr 2008
Total Posts : 499
   Posted 6/10/2008 10:27 PM (GMT -6)   
Welcome Jellybean, I am so sorry you are so sick. I hope you do get better real soon. This web site has great ideas..browse through it and maybe some ideas or treatments will be good for you. Good luck to you. Bellski
Lori (Bellski)-age 43 from Illinois
Diagnosed February 2008 with Ulcerative Proctitis, possible dysplasia
Currently: symptoms have subsided, awaiting biopsy results for dysplasia
Medications:  Asacol 400mg X 6, Cymbalta 20 mg X 1, Canasa (during flares) Vitamins:  Calcium 600 + D X 2, One a Day Women's X 1, Citrucel,
High fiber diet
"I thank God that  I found this website!"
 


Jellybean4688
Regular Member


Date Joined Jun 2008
Total Posts : 99
   Posted 6/11/2008 9:25 AM (GMT -6)   
Thank you. I have so many questions I dont know where to start. I appreciate your comments. It is nice to be able to vent to others that understand.

Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 6/11/2008 10:36 AM (GMT -6)   
Hi Jellybean,

yes you will have a 'normal' life = ) You will reach remission someday.

For me right now, I have begun to look at all my options and knowledge is power.

I can only answer from personal experience so, any questions any time!

All my best,
Beth, 32 ~ small flare - hoping caused by aspirin - hydrocortisone e's
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 5mg 1xday (tapered from 60 = ), Simvastatin 20mg 1xday, Diovan 160mg 2xday. Enalapril 20mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 6/11/2008 10:41 AM (GMT -6)   
Hi jellybean

I too had to drop out of school because of UC. It took me awhile but I did get my degree. You will get better and get to finish school. I think that we need more nurses who understand what it is like to have a chronic condition and this will only make you a better nurse.

I started remicade this year and am very happy i did. Now i'm starting to get to drop other meds. Someday it may just be remicade and no pills!!

I hope you get to remission soon. It is possible. I had a great 5 year remission and am hoping that I am at the beginning of an even longer stretch.

Knowledge is power. Ask whatever questions come to mind.

Good luck
Kelly, 30

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, no more pred after two years!!!! Off imuran as remicade is working!
Prontonix once daily for acid reflux, zofran 8mg every six hours for nausea
Remicade started 3/1/08...just had 4th infusion


Icebound
New Member


Date Joined Jun 2008
Total Posts : 13
   Posted 6/11/2008 6:53 PM (GMT -6)   
Hey JellyBean check out my post Colitis symptom free for over a year and counting. Best of luck to you and as others have said, vent away.

jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 6/11/2008 9:04 PM (GMT -6)   
JellyBean, welcome to HealingWell. You'll find a lot of good information here, as well as just about as many different opinions as there are people on the board. I had an extended flare at the time I was diagnosed, but have now been in remission for the past two years with Remicade. I hope you'll soon find the right combination for yourself. I'm retiring soon, so the world needs a new nurse to replace me!

Also check the links on this page; they will link you to a lot of good information on IBD.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


creamofrice
Regular Member


Date Joined Jun 2008
Total Posts : 32
   Posted 6/12/2008 11:06 AM (GMT -6)   
Hi jellybean. I recently had a really bad flare up...i had 5 blood transfusions, in the hospital for 41 days this april-may, i bled and bled and couldn't eat for about 6 weeks.

I started remicade a month ago and have had 2 infusions so far. I never thought i would be able to go back to work so soon (starting back july 1st) and feel ok and get back to my life. Remicade seems to be working for me so if nothing else is working for you definitley look into it. Also watch what you eat and try not to get too stressed out.

Try to be "zen" and i highly recomend a food diary and eliminate anything that makes you worse. also people on this site swear on spinach. maybe that would help.

Hope you start to feel better
Diagnosed with Severe Ulcerative Colitis in Dec 2005 at age 19
2nd flare up-Hospitalized for 41 days (april-may 2008)
prednisone 30mg (tapering)-taking sicne 2005 :(
asacol 400mg-9 pills a day
remicade (just started)
iron, calcium, vitamin c
Attempting Diet-Eat right for your blood type (Type O)

New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, July 21, 2018 4:37 AM (GMT -6)
There are a total of 2,983,921 posts in 327,207 threads.
View Active Threads


Who's Online
This forum has 161964 registered members. Please welcome our newest member, nenelaoxi05000.
245 Guest(s), 5 Registered Member(s) are currently online.  Details
Steph6n, nenelaoxi05000, ASQ, rge67166, znx96958