My name is Amy, i am married with 4 boys, 2011, I was in and out of hospital due to uc flares. In October I was put on Remicade, which has helped alot, I still have times of bloody stool and rectal bleeding, but since June 28th 2012 my Dr. thinks we have finally reached remission. Although I still have diarrhea, and alot of pain.
Symptoms, come and go, right now, I have loose stools couple times a day, which is nothing compared to what I use to have, I also have alot of pain and cramping with passing stool. I just had a sigmoidoscopy, which showed no new ulcers and lots and lots of polyps and scar like tissue in my colon, my Dr hopes finally we have reached remission. Havent had bloody stool or rectal bleeding since June 28th 2012. Outside of the colon, I have joint pain and inflammation which can be severe, and I have re-occureing vertigo since April 2010
My problem is I work in a hospital as a nursing assistant, I was in nursing school in 2011 but had to drop out due to being sick with UC. Now that I am on alot of immuno suppressants my Dr thinks I should not do patient care, so I have been working at the desk as a unit secretary. I am currently on Remicade infusions every 8 weeks, and methetrexate weekly injections for the joint pain and inflammation and I just came off a round of prednisone to treat another flare of vertigo…. this is my first time using prednisone to treat vertigo, and my Dr. said if it works then that will give us the green flag that this is autoimmune related. By the second day of prednisone the vertigo was almost completely gone…. I am having testing done next week to see if it is contained to just my left ear, or is it in both ears. My issue is, this, I am at a hault with my school and work, if I cannot move forward and work with patients then I cannot become a nurse. My Dr said at least the next 6-12 months and then he would re-assess me. But for now, every couple months I am having something go on, so he wants my body to rest, and hope that things can calm down. I work on a pulmonary floor, so we always have patients that have upper respiratory issue, sometimes they can be there a couple of days before I realize they need isolation, and by that time we have exposed ourselves… I am willing to have surgery if that makes all this dr,s , and medicine go away, and I can resume my life again. I feel like uc has controlled my life for too long. My dr is happy I am in remission, but I am not happy in my career, if I cannot be a nurse, I want to not work at the hospital at all…. My rheumatologist thinks I may have RA or Lupus with the amount of inflammation I have. So my GI Dr argues that if I have surgery that I may still have to be on some of these meds anyway….
I want to know is anyone with UC suffering with vettigo,
I know it is rare, but I can’t be the only one…
and if you had surgery did any of your vertigo symptoms improve,
joint pain improve?
I think maybe remicade is causing the inflammation in my joints…. since I do not test positive to Lupus or RA, and no one in my family has had these disorders. i am tired of Uc controlling my life!!! I just want it gone…..can anyone relate to me? Is anyone out there going through similar circumstance?? I tried reaching out to the CCFA in my state, I called them twice and they keep saying they will send me info about meetings for support and walks…. but they still have not sent me anything…..it is very hard to reach out and ask for help…. and for them to say they will send me information and then not do it… is very low, indeed….. I want to call them and cuss them out, but I keep thinking, give them another day, maybe they will send it today….. I hate my life right now…. its all doctors and meds…. and no fun….I spend money on meds, instead of fun… and I keep getting pressure from my manager about returning to my job as a nursing assistant…. and I have been filling in as a secretary for this other girl who was in nursing school and could not work her third shift…… now she wants it back, but my family and I depend on that money…. and if I do not have a full 3 shifts a week then I will lose my full time status…. which means I will lose my full time benefits… short term and long term disability insurance…. I know I am rambling on and on here…. but it would be nice, to know what on earth I should do, if I should get surgery, or should I just get into a totally new career…. working in an office somewhere…. and continue taking all these drugs that cause my immune system to be low?? Thank you in advance to anyone who responds.
Where I’d Like to be in 1 year:
I would like to be Uc free…. I would like to be drug free, and I would like to have control of my life back, and I would like to be working as a nursing assistant and I would like to be back in nursing school.
I have been on numerous meds,some have worked, some have not, prednisone works while I’m on it, but when I start to taper I start having symptoms again, so I was started on remicade in october 2011, which seems to have improved the uc alot…. however in February 2012, I could barely walk with so much inflammatory arthopathy in every joint in my body. My Rheumatologist feels this is more then just joint pain from UC, that I may have a form of RA or Lupus, or some other autoimmune disease. My question is could this actually be a side effect of the remicade?
I have also suffered from vertigo every few months since April 2010. At first we thought it was sinus or allergy related, as i always had sinus issues…. but this past week we treated it with prednisone, which confirms itis autoimmune related. the ENT treating my vertigo said anytime you have a disease like IBD, or RA or Lupus, you can experience inflammation in the middle ear as well… causing the vertigo… I do not know if it is related to my UC or if I do indeed have RA or lupus…. but what if Istopped the remicade, and had an ileostomy….. would my joint pain and vertigo get better or worse?”
I have pan colitis …. so at age 38 I believe sometime in my life I may have to have surgery anyway…. why put off the inevitable if by chance it could help me now….. and if it doesnt , if I do indeed have RA or lupus… then I will not have to worry about uc too… I can take motrin for joint pain and not worry.
written by Amy
submitted in the colitis venting area