Introduction:
My name is Yolanda and I am 36 years old. I was diagnosed with Ulcerative Colitis in 1997 when I was 23, so I’ve been dealing with this disease for awhile.
My Story:
I started off like alot of young people, in college pursuing my education in Nursing. I was working my way through school as a medical assistant and eventually got a job in a hospital. Then,in 2002 the UC flare up’s got soo bad, I quit the hospital and became a high school teacher. They say those that can’t do….teach. So I taught medical courses… which I loved, I got married and had a child, life was looking good. In 2008, I started noticing I was getting “joint pain” as the doctors called it, in my ankles and hands. My gastro thought it was more like muscle cramps from lack of potassium, since I, just like so many other patients with Ulcerative Colitis had 10 to 20 bathroom visits a day. She told me to drink a bottle of gatorade a day to stay hydrated. So, I did… but achiness persisted and migrated to ALL OF MY JOINTS.. after a few months I was in so much pain I went to a rhematologist (on my own) and was diagnosed with Colitis associated Peripheral Arthritis. I was like a yo-yo, none of the doctors knew how to treat it, so I ended up in the hospital for a week with pancreatitis(overload of the pancreas), due to the Imuran which was increased. Long story short…does anyone else out there have this? I now have been diagnosed with fibromyalgia and just recently “retired” from teaching due to all these complications.
Medications:
I have tried so many medications over the years: Prednisone, Asacol, Remicade, Methotexate,Tramadol, Imuran, Humira, Neurontin… I feel like a guinea pig, since doctors don’t know what to give me. I don’t want to be on any more meds, the side effects are sometimes worse than the treatment. I am looking into holisitic treatment and have changed my diet.
-Yoli
Yoli’s story is now entered into the 2011 Ulcerative Colitis Writing Contest!!!
You Can Join too, click here for details
Some other related posts:
July 17, 2011 at 3:56 pm
Hey Yolanda,
I have arthritis with my UC, but I got the arthritis first. I’ve been on practically every one of the meds you’ve tried too and nothing has been right. Still waiting for the next thing and wishing I could get some life back! I know how you feel, keep in touch if there are any developments your end
July 20, 2011 at 1:05 pm
Hey Kayleigh, I hear ya… Having this Stinks big time. I find it interesting that you started with the arthritis first. Does your arthritis affect you all the time, or just during the UC flare ups? I drink green tea everyday, and have cut out bread (so hard to do). I recently started a no carb (south beach diet) which seems to help with the energy level and joint issues. Realistically, it is not a long term thing, since most low carb or no carb diets incorporate alot of fiber and veggies like lettuce and greens. These make my UC worse. I do hoewever do yoga daily and now with summer finaly here, I swim 3x a wk. I am determined to not let this run my life. Hang in there, between all of us sharing our stories, we will find a way to manage this. I am in agreement with Jessica and Dave, I too want to look into trying the silver for treatment.
July 17, 2011 at 4:24 pm
Yoli—I too have the associated arthritis and it was worse than the gut part ie couldnt walk and stuff. I was on remicaide soley for a bout a year and it did help but there were alot of flares etc. About a year ago i tried nano silver and it made a huge difference!!!! I am still on remicaide and basically just afraid to stop it but have noticed that can go longer between treatments etc but i really believe the nano silver really squashes it–the neat part is that in a week or so (mine took about 3-4 days)you will know if it works/helps or not–is not something that you have to build up etc like remicaide and the drugs–actually the silver doesnt stay in you for more than 48 hours so it cant build up–you will need 5 bottles to start with and that will do the initial dosing and enough for a teaspoon a day (which becomes the standard dosage) for a couple of weeks. Main thing is this nano silver cant hurt you–it is not collodial silver, cant turn blue and all that. Look up PreciousWatersInc.com and call and talk to Harry–then do your own research on nano silver–but for a hundred bucks or so it is worth trying–worked for me! Good luck and you will enjoy talking to Harry cause hes not trying to sell you!
July 20, 2011 at 1:14 pm
Hey Dave, thanks for the info. I will definately look into the silver. When I worked for doctor’s years ago, we used to use gold injections for patients with arthritis. Not sure if they still use them, but it’s worth checking out as well. Anything is better than these harsh medications with so many bad side effects. Any home remedies or diets that seem to work for ya? I can deal with the UC (gastro) flares, I’ve learned how to manage them, but the arthritis never really goes away. I feel some pain everyday, worse at night… so annoying.
July 17, 2011 at 4:54 pm
Hey Yoli…
I can relate! I was diagnosed with Psoriasis 17 years ago. I developed Psoriatic Arthritis 6 years ago. Then the cherry on top was being diagnosed with Ulcerative Colitis 2 months ago. I, too, just resigned from teaching in the 4th grade.
Very similar situations, but, like Kayleigh, my arthritis came before the UC. I really feel like these diseases go hand in hand – like it’s just one baby bundled up in a not-so-cozy blanket.
I’m interested in Dave’s idea with the silver. I think I’ll look into that. It’s way too difficult trying to race to the bathroom 10-20 times a day along with debilitating joint pain! Good luck to you and feel better!
July 20, 2011 at 1:26 pm
Jessica, seems like this is more common than I thought. Glad someone can FINALLY relate. I’m sure for you it was hard to give up teaching too. It makes you question your purpose. But, I have come to realize, it’s not fair to my students. They deserve a teacher that can give them 100%. I hear ya, I would have to stop in the middle of lectures to run to the bathroom. I am looking into the silver too. I just recently found out that Psoriasis is an autoimmune disease too. It’s crazy that doctors don’t even know these are related. My gastro, never told me my whole body could be affected with this. I was always told UC is a intestinal disease. I think we are doing a good thing educating each other, seems like we are going to be educating the doctors. I am all for anything natural. Any ideas or things that have worked for you? The biggest thing I like people don’t understand is STRESS is a major factor. Any future plans? I am looking into online instructing and tutoring. I feel like my talents would be wasted if I can’t do something. (maybe I’m still in denial about not working anymore) it’s a major adjustment.
July 20, 2011 at 2:19 pm
Jessica, it is encouraging to FINALLY find someone who can relate. I am sure it was hard for you to give o teaching too. I just rencently found out that Psoriasis was an autoimmune disease too. It amazes me what doctors DON’T say. I was always told that UC was an intestinal disease. I think it is great that we all share our stories and get educated about these clusters of diseases. We will be the ones informing the doctors. I also am interested in looking into the silver for treatment. Anything natural or alternative is my goal at this point. Have you had any luck with any alternative remedies?
I’m still adjusting to “retirement”, I’m usually doing lesson plans over summer break. Its weird..not having to do that. How are you doing with the adjustment? I am looking into tutoring or online instruction. Something that I can do from home (near the bathroom)…It’s so hard to give up something you enjoy huh? maybe I’m in denial
July 20, 2011 at 1:43 pm
Jessica, It’s encouraging to know that someone can FINALLY relate.I’m sure it was hard for you to give up teaching too. It’s like you work so hard at your goals, then have to have them up ya know?
I recently found out, by doing research about Psoriasis being in the autoimmune catagory. I was always told that UC was an intestinal disease. Even my gastro, says it can cause “joint pains” not full blown arthitis. I think it is good we can all share our stories to figure this out. I think we will be the ones educating the doctors. Yeah, I am going to look into the silver as well. I am still dealing with resiging from teaching, and am finding it hard to adjust. I am considering tutoring or online instructing. (Maybe I am in denial)
I am looking into any natural or alternative treatments. Have you found anything that works? How do you deal with the arthritis? I still haven’t been able to manage that yet.
July 20, 2011 at 2:21 pm
Sorry for all the posts.. they didn’t seem to go through…
July 21, 2011 at 6:56 pm
Walking away from my job and my students was one of the most heart-wrenching decisions I have ever made. I had 110 students crying and hugging me throughout the month before I left. They were grateful that I gave them notice before abandoning them. I wonder sometimes if I will be well enough to volunteer or work half the day as a Teacher’s Assistant or something. School starts on August 15, but teachers go back on the 8th. I might just show up. We’ll see.
As for the arthritis pain… I am stubborn. I don’t take medication until I absolutely cannot stand it any longer. I just limp around during those flares. I have tried glucosamine, but never really noticed a change. Usually I just struggle through it. I wish I had a better response for you. Sorry.
I hope you feel well soon. Take care!
July 21, 2011 at 5:59 am
Hey Yolanda,
I’m 22 and was diagnosed with ulcerative colitis when I was 18. I have had joint pain for as long as I have had bowel symptoms, and at times the arthritis can be worse than the primary colitis symptoms. Usually the arthritis is worse during a flare up, but the joint pain will get worse during bad weather (with a low pressure front coming in or during extremely cold weather) or after walking all day (such as during travel). I have been on Remicade and Imuran, and of course steroids, but right now Humira and Lialda work to keep symptoms to a minimum. I sympathise with your difficulty in finding an effective treatment regimen. The side effects are often worse than the original symptoms.
I have also had great success with accupuncture for both arthritis and bowel symptoms. I have a rheumatologist to monitor my joints, but she doesn’t do much beyond agree with the gastroenterologist on Humira as treatment. I recommend researching an accupuncturist carefully, they really need to know what they are doing to be truly effective. Definitely ask for recommendations from trusted friends or ask the accupuncturist for references from customers.
I also work at a health food store, so I have access to some alternative therapies. For joint pain I like to use a product called Badger 100% Natural Arnica Blend Sore Joint Rub. It comes in little tin containers and is an external joint pain treatment. The active ingredients are arnica montana(a herb in the sunflower family, the ingrediant in arnica, helenalin, is an anti-inflammatory) and cayenne extract. The caynenne is as spicy as it sounds, so don’t touch your eyes or mouth after applying without first washing you hands well! The product definitely takes the edge off of the pain for me, but it isn’t a cure-all. By applying the product you massage the joint too, and I’m sure that helps.
I’m sorry to ramble here, but I hope these tips might help you. Good luck in finding your career path now, and I am sorry for the loss you have experienced so far. Hoping you feel better.
July 26, 2011 at 8:55 am
I also both have UC and fibromyalgia. I went through thins like you where meds and doctors didn’t know what to do, and I started trying holistic drs. I have been going to a chiropractor and have received the most help from him. Its an on-going process, as you well know, and I’ve only been working with the two of these diseases for almost a year and a half, so I’m not healed, yet. This I do know is that the chiropractor has given me the most help and results so far.
August 13, 2011 at 1:12 pm
Has anyone considered gluten as a possibility of being the initial source of the problems. I have recently been doing a lot of research into gluten and have been amazed at what I have read. My journey along this road started 2 years ago when trying to clear up a bad skin rash (I’m 55 now). I realize I had some other symptoms for years but never knew what it was from. Other members of my family have ulcerative colitis, eczema, psoriasis, fibromyalgia, arthritis and schizenophrenia, (amongst others), all of which are now suspected to be the result of the damage that gluten does when it cannot be tolerated by the body. There is a ton of information “out there” – just google gluten and colitis, or gluten and arthritis, etc. and do some reading. It really makes you stop and wonder. Going gluten-free is not as daunting as you might think but the hard part is knowing to look for all the “hidden” gluten. Best of luck in your search for good health.
August 13, 2011 at 1:16 pm
FYI – I don’t know where that first line came from in my reply, I didn’t put that there.
December 17, 2011 at 7:42 pm
Gail is definitely onto something. Gluten is part of the issue. I encourage you to look into the GAPS diet. It helps reduce the inflamation in the body and gives relief to auto-immune disorders. I know several people w/ UC and arthitis who have done this protocol and had success. It is worth looking into. The book is Gut and Psychology Syndrome by Dr. Natasha Campbell McBride. You can read the amazing reviews on Amazon.com. There is also a Facebook page and also a Yahoogroup (GAPShelp) that can get you in touch with other people going through the same thing as you and finding help.
February 6, 2012 at 5:25 pm
I have arthritis in my hip and migratory pain all over my body. My doctors don’t really know how to treat me. I’ve only been on sulfasalazine for my UC, and that’s worked well for the intestinal issues. Supposedly this is also good for joint pain. (I’d hate to know what the pain would be like were I not on these meds.) There are so many diets and treatments, it’s hard to know what will work for UC versus the arthritis. I’m tempted to just stop eating gluten, dairy, and meat and hope for the best. It really seems like the things that help vary on an individual basis. What works for one person may or may not work for another. Good luck and please share any success you might have!