Anyone with Symptoms Outside of Colon? Vertigo and Joint Pain?

Amy nurse with colitisIntroduction:

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.

My Symptoms:

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 Story:

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.

Colitis Medications:

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




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10 Responses to Anyone with Symptoms Outside of Colon? Vertigo and Joint Pain?

  1. Catherine August 6, 2012 at 11:19 am #

    My daughter also suffered with terrible joint pain that worsened when she was on Remicade. She had been in a year long flare and was also on 6 MP, Prednisone and Colazal. The Remicade didn’t help her colitis- nothing did except for prednisone, and after being on it for a year it was causing issues. The only choice was surgery. A few weeks after her colectomy and ileostomy she felt fantastic! She said she felt even better than when she was in remission- much better. She had her jpouch surgery in May, and is doing GREAT! She went from not being able to get through a day at college, to working a full time summer job, and acutally having a social life, too. As her mother, I am so happy to have her off all the medications, and to have a normal immune system again.

  2. Steve August 6, 2012 at 8:19 pm #

    Hi Amy! I hope this message finds you well. I want to preface my comments with I am not a doctor nor do I have any serious medical training. Why say that? While your doctor may be great and have your best interests in mind—you might even like the direction your treatment has gone—but I would suggest taking the necessary steps with your doctor to get off of those medications while trying other routes. I mean, you say your UC is better but now you have had trouble getting around and were advised to avoid patient care because of your medications? You also mentioned still seeing blood and bouts of pain…does any of that sound like remission to you?

    I know some people find peace with Western medicine and more power to them…but from hearing your story, I think your treatments are causing you lots of issues that you otherwise would not have issues with. I mean, you mentioned testing negative for lupus or any form of RA…so the Remicade is likely causing the inflammation, and if not, your UC is manifesting itself in a different way. One way mine does is my skin will break out pretty severely.

    Maybe I read your story wrong so my mistake then…but if you are still showing symptoms and your vertigo/inflammation is active, I just think you might do far better with other treatments. If not a medicine, maybe a lifestyle change or diet modifications. Lots of things sound better than what you are and have had to endure…

    If nothing else, might I suggest checking out Elaine’s book Breaking the Vicious Cycle or Dave Klein’s Self Healing Colitis and Crohn’s? Just to read them for the information they will bring to you. It might give you hope to try one of the methods, seek more natural treatments or at least show you that the medications you are being asked to take are probably doing a lot more harm than good. And yes, to anyone who reads this, I know the medications work for some and I am happy for those people. But I also know they equally make other lives that much worse—mine was one of them—and that can’t be ignored.

    Thank you for sharing your story Amy…and I hope you find a treatment that takes you where you want to go, whether it be the traditional treatments or a natural one. Steve

  3. Bev August 6, 2012 at 9:13 pm #

    Hi Amy,

    Boy oh boy, do I hear you! You want to be UC free, drug free, and have your life back! That should be our anthem…heck, it is our anthem!

    I can’t fathom the amount of inflammation that you must have in your body to have all of these problems, and to be on all of these drugs. I hope you will read alot of the posts on this website, and take from them what you think may work best for you, or what you might even like to just try.

    I have pancolitis…total colon involvement. 13 years of my life, that I cannot get back. I hate to think of it that way, but it is true. UC can rob us of our control of our lives…but only if we let it. Also, I think that the doctors tell us what to do, and to take some of that control away from us, because we are scared, and don’t know exactly what to do. I am not sold on the idea of drugs at all, especially when you try ‘everything’ and they don’t really work.

    I have actually gotten off all of the meds for UC. I started a good probiotic about 6 months ago (a 50 billion strain). It took about two months for it to really start working, so I’m glad I didn’t bail out too soon, and just stop taking it. It worked so well in taking away my pain, urgency, and everything else, that I decided to ‘wean’ myself off of the 12 asacol pills that I was takling every day. It took about a week and a half, and I was drug free. I still had a bit of bleeding, so I asked a clerk at the vitamin store how I could stop that. I was recommended L-glutamine, for healing of =my colon, and astaxanthin, a natural anti inflammatory. Well, I kid you not…I am totally symptom free. Completely! I don’t know why these three things worked for me, and continue to, but they did. Before I tried this natural stuff, the doc wanted to put me on imuran and remicade and prednisone, too. When I read about these drugs, which were immune suppressors, I said no way. I just could not bring myself to put that stuff in my already screwed up body!

    Anyway, just a thought. I am not telling you to stop taking anything, but if the drugs don’t work, why not try something natural that is actually proven to help? Those things that I told you about cannot hurt you at all. I never believed in natural things, mostly because my doctor told me not to waste my money. Now, I wonder about doctors, and if they really want us to get well at all. I’m serious. Or, do they want us to stay ill so that we can keep coming to see them, and spend money on drugs…I hate feeling that way, but that’s been my experience.

    As to the vertiogo…I was dizzy for almost three years staight, and my doctor could find no reason for it. That was about 7 years ago. It was awful, as I had my oen clothing consignment store, and had to run it six days a week. I can’t believe I made it through that when I think back! Anyway, it went away on it’s own, believe it or not. Just this morning, Dr Art Hister, on the morning news, said that people with vertigo, who can’t be cured, should google it on youtube!! Apparently, there is a video on there that shows a move or moves that can get rid of it and there is almost instant relief!! Please go to youtube and find it. I haven’t looked at it, but maybe it will help you? Let us know if it does, okay?

    Cheers, and I hope you feel better soon.
    Bev:)_

  4. uma August 7, 2012 at 6:59 pm #

    Probiotics cant harm you. They have no side effects. So there is no harm in trying them. They balance the immune system. I have a hunch that finally after years of research it will turn out that bacteria will be the cure for colitis. I may be wrong but just guessing, because it has worked for so many of us.

    • Bev August 8, 2012 at 6:29 am #

      I have to second that, Uma!

  5. Steve August 7, 2012 at 7:10 pm #

    Gotta third the probiotics suggestions. I only briefly tried them but was also on an antibiotic at the time and to me, even though the doctor informed me the two would not affect each other, I was skeptical. I mean, one is bacteria and the other kills bacteria…so I put the probiotics aside. Fast forward to now…I am not taking any antibiotics and am trying homemade yogurt which is made with good bacteria in mind. There are plenty of ways to go about managing your UC, you just gotta choose where you want to be and go for it. We’ll be happy to help…:)

    Steve

  6. Jill
    Jill August 17, 2012 at 10:29 am #

    Girl your story…Wow! I have not shared my story yet on this site but wanted to bring some encouragement as to a career decision. I am a dental hygienist diagnosed with UC in 2003 with only experiencing 2 years of true remission- no bleeding, mucus, joint pain, solid stools. Currently out of remission now….my new strange symptom of waves of dizziness that attracted me to read your post.

    I continue to practice and work full time. I have not missed work unless for surgeries, hospitalization and this last time for my back going out due to all the inflammation. I’m exposed to body fluids direct and indirect daily and have expressed concern to my gastro with my immune system lowered and blood work at dangerous levels. Gastro encouraged proper chain of asepsis and using PPE is critical. It sounds as if the desire to be a nurse is strong and are weighing things out. I say this as a thoughts to ponder…do you have human contact with people outside work every day without mask, gloves, goggles and proper handwashing ( PPE) ? I feel a safety knowing I have protection at work and it is accepted by patients to be treated with that protection. Many times patients choose not do disclose health issues to the dentist because it isn’t tooth related. Ever go to a social gathering and later get a message- little johnny/suzie came down with the flu or someone was hospitalized and realized you shook thier hand, played with them, gave a hug? There are so many areas of nursing to choose from. We need good nurses! Dont let the fear consume you…

    I would also recommend the book breaking the vicious cycle. It makes sense. Remicade did not work for me. Humira put me in remission but gave me pustular psoriasis over 90% of my body and the pustules were filled with staph. non responsive to the mesalazines. Prednisone works for me in a flare. Me, my family and co workers hated me on that stuff. After this last episode of following the gastro advise and consuming more fiber.. my back went out due to all the inflammation and pinched the nerves that shut my colon down for 10 days. More prednisone (yuk) and the addition of Imuran. That made me look seriously into my diet. I got on the internet and found this website and found out about the book. SCDlifestyle is another place of help. I am slowly learning about my body through trial and error. I have made it through the intro diet and have a safety zone of foods, take the SCD probiotic, enzymes and multivitamins. Gotta love the yogurt. I have also learned that I am poorly disciplined when it comes to food despite having been an athelete over 20 years until my back went out April 1. I have been off all prednisone since the end of may. Test has shown Imuran is not at theraputic levels. cbc, cmp has many flags of abnormal and felt very weak.. Gastro has referred me to mayo clinic for a second opinion. I quit taking Imuran after 3 months. No remission. I’m scheduled with Mayo Clinic in September.

    The dizziness started when I started the SCD intro diet. They are brief waves noticed after drinking water or as an emotional situation occurs or having to do quick thinking. Gastro can’t explain. Sometimes I have to sit down or pull over to the side of the road if I’m driving. I’m suspecting something possibly with seratonin levels, yeast, wheat. have you noticed any times when your vertigo happens?

  7. Amy February 9, 2013 at 9:50 am #

    Yes UC with debilitating episodes of vertigo and vomiting.

  8. C
    C May 7, 2013 at 8:47 am #

    I was recently diagnosed with ulcerative proctitis (April 2013) and am now feeling very weak and tired. Fatigue is a good word. Labs show my vitamin D2 is severely low and ANA (antinuclear antibody-to test for inflammation)is abnormal. I’m going to the doctor’s office today to pick up yet another prescription for 50,000 units/week of vitamin D and to get more labs drawn to rule out lupus, scleroderma or other autoimmune diseases. I’m frustrated because things are moving so slowly-I feel like I’ve fallen between the cracks at my doctor’s office and recently I’ve been dealing with the nurse practitioner and I question her ability. I think I will get through this round of tests and treatment and then switch doctors.

    Does anyone else know about a connection between vit. D deficiency and fatigue? Does anyone else have an additional chronic condition along with a colitis diagnosis such as lupus/scleroderma/polymyositis/rheumatoid arthritis?

    Geez, just recently I was healthy, without a care in the world and now the fun world of doctors, pharmacies, ‘special dietary considerations’ and I wonder if I’m turning into a hypochondriac; my right foot hurts, is that R.A.?…the inside of my mouth is sloughing off, do I have Crohn’s now too?…I’m super tired and called into work one day last week, is it MS or muscular dystrophy?!!! Then I calm myself down, regain my sense of humor and do something that does not involve COLITIS!

  9. lynne May 7, 2013 at 1:13 pm #

    Hello C,

    Seems like lots of people with uc are Vitamin D deficient. So, you’re in the uc “norm” there. Also, do you use Crest toothpaste? I’ve found many complaints online about Crest Pro Health toothpaste causing the inside of the mouth to slough off. Perhaps there are other toothpastes that cause this, as well. Something not right about that. Just thought I’d mention it. And, btw, I’m a big over-thinker, too … imagining all the things might possibly be wrong. It’s pretty normal, I suppose, especially when you’re going through the testing. I get fatigued when I’m losing blood or when my bathroom episodes are particularly traumatic. Zaps me of energy REAL fast … also a normal part of uc. Gotta run now. Lots of good stuff for you here on this website. Be encouraged. :)

    lynne

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