The Chronic

Riann fs

My name is Riann. It’s pronounced Ryan, just like a boys. Just wanted to clarify straight out. I currently reside in sunny South Florida with my 2 young daughters. I have been in healthcare for 10 plus years and work for a medicaid provider process appeal requests from hospitals and doctors offices. I was diagnosed a little over a year ago but suffered with symptoms for about 3 years before that. I am truly grateful for my diagnosis. It may be strange to say but at least I know what it is and there are options for treatment.

Colitis Symptoms:

My symptoms are not that bad right now. I have the joint swelling and chronic fatigue. Sometimes my brain gets a little foggy but I have not had any cramping for about 3 weeks. Like I said before stress is the biggest factor for me. Certain people can trigger stress and then I will flare and thats never good.

The Chronic

I am currently taking a probiotic, iron, vitamin C & D, and tramadol for the joint swelling. Recently started taking Lialda again. Typically if I have a flare I am prescribed a metro dose pack. Since my diagnosis my diet has changed completely. I drink smoothies a lot. I add Almased powder to increase the nutrient value. Ulcerative Colitis has completely changed my life. Having a chronic illness means you don’t know what tomorrow will bring. I struggle with my healthcare providers because they do not understand the amount of pain I am in everyday and how utterly exhausted I am after work. I am on the fence right now about working outside the house. I love working and enjoy what I do but my last flare was due to the fact we were short staffed and the work still needed to be done. I don’t care about the doctor checking out my bum. What I am unhappy with is how my body has changed… Losing the weight in the hospital, then gaining the prednisone weight and losing half my hair was rough… I am back to my normal weight but I lost all my strength. I am going to force myself to workout because I don’t know whose body this is. My family is one of the things that triggers a flare. I have a very intense Cuban family. Every time we have a family event or they come to town I get sick. I am most concerned for the future. I am not confident the doctors have my medication right. My other concern is for my kids. I already feel guilty that some days I am to tired to do much of anything. I am also concerned that they will end up suffering from UC as well. In the meantime, I will continue to be happy my health is mostly good and pray for a cure.

Medications Tried:

Prednisone..devils work… After taking that stuff I know what it means to be mental. It was so hard my the kids and my boyfriend.
Imuran–not sure how well it worked since I took it while I was on Prednisone. I broke out in a weird rash and had to stop.

written by Riann

submitted in the colitis venting area

8 thoughts on “The Chronic”

  1. I hope you’re through it some day at least for a while. I have had a temperature of 101.2 for a month. Everything I eat changes to brown water blood. I am completely exhausted all the time. My face is red. It is from not feeling well, but I don’t know why it’s red, but I can feel the heat coming off of it. Every part of my body is so bone tired. To top it off, I stock shelves for hours on end for my job. I actually think that helps me a lot. I think forcing myself to move helps. I refuse all meds. Tried them and I was allergic. One of the side affects of Remicaid is cancer and they wanted me to try that. No thanks. I usually can get myself better anyway without the hair loss and the extreme weight gain from prednisone. I need prednisone to stop it, so I take it. It’s nice to hear someone else understands what it is like living with this disease. It try to tell my boss, but I don’t think he understands.

    1. Wendy, you are a true trooper! I am feeling much much better & thank you for your comment. I as well have refused taking medication for my UC directly. The side effects seem to be worse than my symptoms so I am currently treating those with a combo of diet, vitamins, smoothies packed with supplements, essential oils & pain medication. The smartest thing I have figured out is how to stay away from stress. This has included removing people, places & things that cause unwarranted stress on me. I too have had bosses, family, & friends that don’t understand this condition. I often wish they could experience it for just one day to open their eyes. So if the boss continues to be an issue you have 2 options: take a s*** on his/her desk or look for a new job. Take care of yourself first because there is only one Wendy like you in the world!

      1. Ha ha!! I would love to do the first, but would be afraid of charges of some kind from the law. Ha ha ha! Thanks. I have crapped my pants at work. The only time I’ve ever done it in my life and it was after work. I could write an entire story about that experience.

    2. I rely primarily on exercise and yoga to control my symptoms. Deep breathing yoga techniques have literally rid me of a lot of stomach pain and numbness on a daily basis. Try it after consulting with doctor. It is called Anulom Viyom by Baba Ramdev. I do this in morning for 1/2 hour before I eat breakfast. Tightened my stomach muscles also. You can also try Right Nostril breathing for 1/2 hour right after lunch. Helps with digestion. Hopw this works for you :) BTW I have UC and IBD.

  2. Hi Riann,
    I am back to this group after about 5 years. I’ve been successful treating my UC with diet- I’ve been very fortunate to only have had mild flares that have been easily treated. Your post caught my eye because of your comment about stress. I recently have had the physical stress of a two week Europe trip and came home to a horrible betrayal. Two days later I end up in the ER with abdominal pain and a new diagnosis of Infectious Colitis. I’m convinced that the stress I experienced had a huge impact on my system and led to my trip to the ER. I see that you have found stress to be directly related to your symptoms as well. What essential oils do you use? what vitamins? Thank you and I’m glad you are feeling better.

  3. Hi Michelle: Sorry it’s taken so long to respond. I have been in the middle of a move. So speaking of stressful situations; I think STRESS is my number one factor that will make me flare. I am a huge fan of Young Living. I use essential oils for everything. I have found the purification blend helps me get out of bed in the morning and fight the fatigue. Typically I will go home feed kids and then be so fatigued I can do little more than that. The purification blend helps me keep moving. I would tell you Walmart has different blends that are affordable. I would start there. I moved to better quality of essential oils after I found they worked for me. That being said Young Living is very high quality but expensive. It’s really trial and error and you have to think what symptoms you are trying to treat. I also take a lot of vitamin C, Iron & D, papaya extract & turmeric. I regularly drink smoothies to keep full and help bulk up on nutrients. I also use Almased to add to smoothies to boost nutrients.
    This combination helps to keep me from flaring, keeps me on the right diet and feeling good. BUT dealing with stress is more than anything you eat, drink, etc. You have to be aware of the stress in your life. Then you have to decide if that stress is worth having. You have to really change the way you think about stress and try your best to be prepared for it. There are some things you can not prepare for but know your life and your health are more important than ANYTHING. I wish you the best luck and please read Charu post. Yoga is very helpful but I have found that guided meditation is even better. Try Lillian Eden and listen when you go to bed. Hope you are feeling better!

  4. I have uc for about 10 years now. I have tried every med known to the Doctors except humara. After being very sick from remacade I refused to take anymore drugs. My son who has a colostomy told me to go to a naturalpath.I told my doctor what I was doing and he got very upset. But it’s the best thing I ever did. He sent me for a blood test that had to be sent away and I had to enclose my visa number. Before I got my report back my card was charged 495.00 .I was told this was the cost of the testing. The report came back and I find out I am alergic to yeast,Dairy products and some seafood. The Doctor told me what not to put in my mouth and it’s been about four months now with no medication. I still have the UC.but seems to be under control. I stll have some leaks and quick trips to the toilet but when I go out for long periods I wear a man’s diaper (underweaer). I feel great on no drugs . I take probiotics daily and live my life. I am a ships Captain and can now do my job with very mild symptoms. ON a couple of occasions I have tried to cheat with something I shouldn’t eat. Within two hours I get my UC symptoms back for a couple days.I love a good slice of homemade bread and find I can eat sour dough bread made from natural yeast. Hopefully this update will help people cope with their disease.

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