New to the Group, Diagnosed with UC

I was diagnosed with UC at age 17 by colonoscopy and am now 38. Living with this disease has been a struggle and I’m thankful to have found this group. I work full time in the healthcare industry, and have a wonderful husband and five children.

Some more about Dana:

I live in North Carolina, USA, with my family and love to spend time at the beach “(Very therapeutic for my disease). I like to walk too.

Current Colitis Symptoms:

My current symptoms are joint pain, bloody stool, frequent bowel movements, some cramping, nausea and insomnia due to the lack of sleep (Which has also caused some depression)

Dana’s Story

I cannot seem to kick this flare that I have had for the past 2 years.

Yes two years!

I have been on several medications.

I am starting to feel hopeless.

I have missed a tremendous time off from work being sick.

I was hospitalized in Oct 2015 for a couple of days, and seemed to get better from the steroids and then of course it came back. They put me on remicade and when I went in for my second dose, I had a terrible reaction. I almost passed out. I have changed Dr’s since and my new Dr has prescribed me mercaptopurine (Chemo) I have not taken it yet, as I am very fearful. The word chemo scares me. Has anyone ever taken this? Will I lose my hair? I have a Drs appt next week, and will ask him. I didn’t know this was chemo when he prescribed it, so I didn’t know know to ask.

Any help is appreciated.

I would also like advice on what anyone else does for the joint pain?(Join Pain Survey – Click Here)

Taking tylenol and motrin just doesn’t cut it.

I am 38 years old and feel like I am 80 years old at times.

It’s hard living with these symptoms and feeling sick all the time.

I feel bad complaining all the time to my husband, although he is very good to me and helps me.

A lot of times, I suffer in silence and cry myself to sleep. I am not looking for sympathy, but like minded people going through the same thing. The prednisone keeps me awake, and the whole idea of him prescribing me the chemo is to wean me off of the prednisone, but I just can’t bring myself to take that drug. I am thankful for this site and hope to make friends that are going through the same thing.

Thanks so much for listening.

Medications Tried:

Things tried in the past: remicade as I described I had a terrible reaction at the infusion center(Remicade details within the side effects database – click here). I am currently taking Prednisone 40 mg, Lialda and cipro.

written by Dana

submitted in the colitis venting area

20 thoughts on “New to the Group, Diagnosed with UC”

  1. Hey have you ever tried any natural anti-inflammatories? They don’t work for everybody but for some people they can work in a simailer way to the drugs. Boswellia and turmeric are good ones to try first. In addition cbd oil is something completely safe that could benefit everyone with inflammatory disease.

    1. Agree with Kiernan re: natural anti-inflammatories.

      Someone close to me went through a 2 year flare and finally got a hold on it by taking high CBD oils orally for a couple months morning and night to soothe the pain, inflammation, and reduce urgency and bleeding. Bonus it reduces emotional and physical stress (which can fuel a flare). Ate only whole foods (nothing processed) and used a vitamix for most meals to make healing nutrients easily available for absorption and putting less stress on digestive tract by having to do less work to break apart nutrients. Omega 3’s very important also (natural anti-inflammatory effects). Once inflammation/bleeding under control, was able to introduce more foods back into diet – learning and noting along the way which ones are very healing/safe vs which ones are irritants (if any). Also finding ways to soothe your mind and emotions, like you said the beach! Meditation can be an incredible tool for soothing your mind – (guided, like in our town here we have an open and welcoming buddhist meditation centre – you don’t need to be buddhist all are welcome). Effects can be less pain, less stress, higher or renewed resilience in suffering.

      Best wishes in finding your way to health again xo

  2. Hey Dana, you sound a lot like me. I’m 40, live in upstate SC (right on NC border) and have been in and out of flares since my diagnosis 5 years ago. The beach is the only place I feel normal- walking on the beach is my favorite pastime- maybe there is something about the salt air:) My family is actually trying to move to the coast next summer.
    I was on remicade for 1.5 years until it quit working, have been on humira for 7 months but am currently flaring pretty bad so we think humira is losing its effectiveness. My next step is Entyvio. I have been on methotrexate before and it made me really nauseated so I stopped it right away. I am back to following SCD diet, taking probiotics, drinking bone broth daily.
    I wake up everyday with my body aching. I too feel like an old woman when I wake. I take 2 tramadol every day just to be able to deal with the body aches. Still doesn’t take all the pain away. Exercise helps and I’ve been on prednisone now for 4 months along with the humira. I have had lots more energy this summer but I fear it’s the prednisone and not “true” energy. I am down to 10mg now.
    I don’t know what to advise you as far as what medicines to take. They work differently for everyone and when I am in a horrible flare, I am willing to take anything to get out even when I have sworn to myself I would never take a certain drug. Anyway, I am just writing to say I get it. I feel your daily struggle. This disease can take over every aspect of your life. Keep walking, spending as much time in the salt air as possible and enjoy the good days. There will be tons of more good days ahead!! That keeps me going!

  3. HI Beth! Thank you so much for taking the time to share your experience. I would love to stay in touch with someone who knows exactly what I’m going through! I have started humira again and took my 4 loading doses of 40mg. Its helping slightly but the aches and joint pain is terrible. Looking forward to chatting :)

  4. Hi Dana!
    I feel you. I’m 36, have been dealing with UC for going on 8 years now. Recently I was going through an almost 2 year flare up, lots of pain, blood and constant need for a bathroom. I was getting desperate, until my new doc suggested Humira (I feel like an advertisement) BUT it worked from almost day 1. I’ve been on it a couple months now and am pretty much symptom free. Look into it before you start that chemo, it has changed everything for me. Don’t let the cost scare you, it took a lot of paperwork but there is a program to help pay for it of you need it. I wish you the best in getting a handle on your flareup :) I know how you feel, and actually you gave me some incite on all my joint pains, I didn’t realize they could be related to my UC.

    1. Hi Lisa,

      Thanks so much for the information. I did start Humira almost two weeks ago and it has helped some of my symptoms. But the joint and body pain is so bad that I can barely take it. I know I’m no spring chicken but I’m 38 years old. I feel like I’m 90. I’m normally an active person and this has just about killed me. Praying that this lady can help me tomorrow!!

  5. Hi Beth, you should not be taking tramadol with uc! It still make you constipated and potentially lead to toxic mega colon. Double check that with your doc!

    1. My GI is the one who prescribed it. He said it was one of the only ones safe for UC. Told me to avoid aspirin and ibrophren. I know a lot of UC’ers who take it daily. What is in it that is unsafe for UC? It has never caused me constipation. Drugs like loritab have but never tramadol.
      I haven’t heard this before but I’m certainly not saying I’m right., would like more info
      What do you take for pain?

  6. Hi Dana and Beth, I am also a Carolina girl, living outside of Columbia. I was diagnosed 33 years ago. I remain very active and still work in health care. My current symptoms are 10-20 loose bms a day with occasional bleeding. I reluctantly recently restarted prednisone 40 mg a day. I turned in a stool specimen to rule out c-dif since I did have it a year ago. In the last year I have had good response taking 4000mg of turmeric and a fiber laxative. Other supplements have included vitamin E, D and fish oil. When I am doing well, I can eat any and everything. When I am in a flare, everything seems to cause a problem. Maybe I should try eliminating gluten and or dairy since many people on this site recommend doing so. I have not tried any of the biologics. Only those of us suffering from the disease can understand the constant brown cloud following us around. I do not have any great advice. Everyone seems to react differently to everything. I wish all the best in dealing with this terrible disease.

  7. Thank you, Cheryl. Yes, definitely a brown cloud following. I’m actually very sick right now after taking Humira. I’m so done with this disease. It seems like there is no hope in sight.

  8. Hi Dana, I can understand how awful you must feel. My husband had active UC for the past 10 years. He was at a very low point in his life around late last year and early this year as his gastroenterologist said he just may have to live with this disease, but his disease had gotten way worse, so he felt hopeless! As a last resort, this February, he decided to see a gastroenterologist/integrative medicine doctor, in Los Angeles, where we reside. The doctor put him on supplements to help him with nutritional deficiencies, and Enteragam, which is a medical grade food. My husband also went on a Ketogenic diet. My husband’s bloody stools & diarrhea 5 to 6 times per day stopped about 6 weeks ago, and at last week’s appointment with the Doctor, the doctor confirmed that my husband is in remission! This is like a miracle that I did not think was possible. I strongly believe the Enteragam plus the Ketogenic diet put him in remission.

  9. Hi Dana, sorry to hear things are going badly with the humira. I am in a similar position just further down the line as I have been in a continuous uncontrolled by medication state for 5 years. This has meant hospital admissions for intravenous steroids every six months and regular iron infusions. I spent last Christmas in hospital with an Addisons crises due to adrenal insuffeciency caused by continuous steroids and now am unable to live without them. I also have osteoporosis and hip, knee and other joint problems all confirmed by my Rheumatologist to be caused by steroids. I have also tried Methotrexate, mecaptapurine, Azathioprine and infliximab ( I am in the UK ) all had unbearable side effects including nausea vomiting (daily, sometimes hourly ) hair loss, vestibular neuritis ( constant dizziness and loss of balance ) and still no remission to make the side effects ‘ worth it’ I think Adam has the key…..natural is best, it let’s the body help itself. I know that for some people medication has worked and that’s great but unfortunately it’s certainly not a case of ‘one size fits all’ I also believe that learning to love yourself and regain some peace of mind to help with the depression dealing with a chronic illness can bring is a goal to aim for ( yet to achieve!!). Having people who are going through the same must help as only they can understand. Good luck. If you want to chat further let me know.

  10. I have been living with UC since 2007, I’ve tried many many things. I’ve given up caffeine, red meat, alcohol, pizza and pasta. I should really give up all forms of sugar because I know it inflames the body but I haven’t quite managed that yet.
    I have had massage, reiki, reflexology, cranial sacral (the fifth time I had it I got it!), Bowen, Myofascial release – the fascial unwinding video is here (
    I’ve had energy healing, distance healing and done some pretty wild and whacky things in order to move on from this diagnosis. I’ve been unable to work at times, but been lucky to be able to have had a part time job and work around the disease. Working definitely was one of the factors that helped to stabilise this disease for me, having a role and a purpose is so important to me. Plus getting myself a place to live on my own was really beneficial. But all that would not have been possible without doing some inner work. I went to a place in Scotland to try and work out what was going on in my head to resolve the issues in my body called Penninghame. It has always been my firm belief that we get diseases from dis-ease of the mind, stress being the major cause. I got my UC because I travelled the world came back and discovered my dad had terminal cancer, I had no stability and my world was crumbling around me. After having had a year of complete freedom it was a big shock. So in 2014 after having done the course in Scotland I found my health started to stabilise, I wasn’t on any drugs after having been on steroids for at least two years and mesalazine, azathioprine, methotrexate etc I came off everything and felt good. Full energy, I pushed myself into challenges to prove I could do it. Like working at festivals and volunteering in Bosnia and Malawi. Like walking to Santiago de Compostella on a part of the camino trail. Then this year after having decided to fully go it alone and become self employed my landlady decided she wanted to sell my flat. That and the stress of having to be self sufficient sent my colitis right back to flare city. I couldn’t believe it. I thought I had cracked this disease, I thought there wasn’t any way I was going to have a flare again, that couldn’t be possible could it? Not me, I’m a complementary and alternative therapist I know how this works. But it just goes to show, sometimes life pulls the rug away to shake us up and show us what more is needed to be done. And this time round it’s back to the steroids and distant healing. The like of which I would never have begun to understand unless I hadn’t done all the work leading up to this point. Now the distance healing is like a dream fix for me. So my theory is keep at it, keep plugging away and try anything and everything, don’t give up hope, my help has mostly come for free, when I haven’t had the money it still came along. So don’t find excuses that you can’t find a way to get well. You can. But it’s your journey and your time. And it takes time. Just hang in there. You will find a path that works for you. Mine works for me. If you want details of my lovely healer feel free to contact me. She lives in Australia – but she works across the world. Good luck.

    1. Sorry to hear you are suffering like me. My Doctor asked me not drink Milk and to use as less possible for other dairy product, everything else is okay.

  11. Dear Dana.
    Sorry that you suffer due UC. I am writing to you from Bangladesh, I am 59 yrs old and active male. I too was diagonised on 9 Aug 2016 with moderate cronic active UC by colonscopy after flare up lasting for about 45 days .
    Doctor prescribed
    a) Zox (nitazoxanide) : 1+0+1 for 3days
    b) Neofloxacin (ofloxacin) 500mg : 1+0+1 for 7 days
    c) Mesacol 400mg (MESALAMINE) :2+0+2 for continuation.

    During the days I was taking ZOX I had serious bone pain in my hip area but after 3 days the pain dissapeared. The frequency of toilet remained for about 10 times a day with sever cramps in stomach with urgency to rush the toilet. Gradually after 15 days the
    bleeding kept off and on for another 10 days and frequency of toilet declined and finally around 30 Aug the bleeding finally wasn’t spotted any more and I went into remission. Doctors ordered me not to drink Milk at all and to avoid dairy products as much possible,
    once in a while it is okay except milk. Alcohol is no problem as I am quite a heavy drinker about 15 drinks per week of whisky or vodka (no beer or wine, being a diabetic too). Maybe, this will be of help to ou and other members in this forum. Maybe, you can talk to
    your doctor with my prescription and ask his advice on it. Pray you get well and lead a productive life and ON’T be anxious or worried about it, it is very important. Try to lead a stress free life, I know it is tough but possible. As regards coffee, I have no idea cause I drink blck tea without sugar &/or milk.

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